Community Disability Services: An Evidence-Based Approach to Practice

IAN DEMPSE Y Designed for students of disability studies and practitioners working in community disability services, this textbook addresses the critical issues that affect the support of people with disabilities and the staff of disability support organisations. Community Disability Services provides an essential bridge between research and practice by including extensive discussions of work-based issues, as well as Australian case studies and action learning activities, making it as much a practice manual as a textbook.

K AREN NANKERVIS

edited by

DEMPSE Y NANKERVIS

UNSW PRESS

COMMUNIT Y DISABILIT Y SERVICES

It covers three broad areas: • Disability and modern society • Working with people with disability • Working in disability services. The contributors are respected academics, practitioners, and people who have personal experience of disability and disability support services. While the book addresses issues relevant to people with disabilities in general, its primary focus is on people with developmental disabilities, who make up the majority of disability support users. Chapters address current issues in disability services policy, practice and management, and report current research f indings with a view to informing evidence-based practice.

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AN E VIDENCE- BA SED APPROACH TO PR AC TICE

COMMUNITY DISABILITY SERVICES

IAN DEMPSEY is a teacher and researcher based at the University of Newcastle’s Centre for Special Education and Disability Studies. He has worked as a high-school teacher, a teacher of children and adolescents with autism, the coordinator of a respite care service for people with a disability, and an academic. His research interests include legislation, policy and services in school and community settings for people with a disability, and family empowerment. KAREN NANKERVIS is the head of Disability Studies in the School of Health Sciences at RMIT University, Melbourne. She has over 20 years’ experience in providing supports to people with disabilities as well as in research and tertiary education in the disability sector. She has been national president of the Australian Society for the Study of Intellectual Disability, editor of Intellectual Disability Australia, chair of the Disability In-Service Training Support Service Advisory Committee, and a member of the Disability Services Quality Improvement Reference Committee.

COMMUNITY DISABILITY S E RV I C E S AN EVIDENCE-BASED APPROACH TO PRACTICE

Edited by Ian Dempsey and Karen Nankervis

UNSW PRESS

Purdue University Press West Lafayette, Indiana

A UNSW Press book

© UNSW Press 2006 First published 2006 All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. While copyright of the work as a whole is vested in UNSW Press, copyright of individual chapters is retained by the chapter authors. Inquiries should be addressed to the publisher.

Simultaneously published in USA and Canada by Purdue University Press South Campus Courts, Building E 509 Harrison St West Lafayette, Indiana 47907-1207 USA

The rest of the world by University of New South Wales Press Ltd University of New South Wales Sydney NSW 2052 AUSTRALIA www.unswpress.com.au

Library of Congress Cataloging-in-Publication Data

National Library of Australia Cataloguing-in-Publication entry

Working in community disability services : an evidence-based approach to practice / edited by Ian Dempsey and Karen Nankervis. p. cm. Includes bibliographical references and index. ISBN-13: 978-1-55753-414-9 ISBN-10: 1-55753-414-4 1. People with disabilities – Services for. 2. Social work with people with disabilities. 3. Developmentally disabled – Services for. 4. Sociology of disability. 5. Sociology of disability – Australia. I. Dempsey, Ian (Ian James) II. Nankervis, Karen. HV1568.W65 2006 362.4'0453 – dc22

Dempsey, Ian. Community disability services: an evidence-based approach to practice.

2005020028

ISBN 0 86840 615 5. 1. People with disabilities – Care – Australia. 2. People with disabilities – Services for – Australia. 3. Sociology of disability – Australia. I. Nankervis, Karen. II. Title. 362.40994

Design Di Quick Print Everbest, China

Contents

CONTRIBUTORS

ix

PREFACE

xv

Disability in contemporary society xv • Theory, research and practice xvi • The purpose of this book xvi • What the book does not do xvi • How the book is organised xvii •

PA RT 1 • D I S A B I L I T Y A N D MODERN SOCIETY 1

CONCEPTIONS OF DISABILITY

3

Ian Dempsey and Karen Nankervis Learning objectives 3 • Introduction 3 • The influence of society 4 • Support needs and classification systems 7 • Defining disability 8 • Theories of disability 11 • The incidence of disability 16 • Recent influences 18 • Community supports for people with a disability 22 • Learning activities 23 • References 24 •

2

LIFTING THE SILENCE

27

Patricia O’Brien, Christopher Newell and Irene McEninery with Avril Thesing Learning objectives 27 • Introduction 27 • Civil rights movements and disability 28 • Moving from paternalism to partnership 36 • Life or lifeless 41 • Conclusion 47 • Learning activities 47 • References 48 •

3

BELIEF SYSTEMS AND DISABILITY SERVICES

51

Ian Dempsey Learning objectives 51 • Introduction 51 • Principles of disability service provision 53 • The challenge of transferring principles into practice 72 • Conclusion 74 • Learning activities 74 • References 75 •

PA RT 2 • W O R K I N G W I T H PEOPLE WITH DISABILITY 4

SUPPORTING EMPOWERMENT AND CHOICE-MAKING

81

Karen Nankervis and Roger J Stancliffe Learning objectives 81 • Introduction 81 • Power, power sharing and selfdetermination 82 • Guardianship and financial management 86 • Choice and degree of cognitive impairment 88 • Preference assessment for people without conventional means of communication 90 • Making more complex decisions 93 • Major life decisions 96 • Assessing and managing the risks associated with making choices 98 • Conclusion 104 • Learning activities 104 • References 107 •

5

PLANNING FOR SUPPORT

110

Karen Nankervis Learning objectives: 110 • Introduction 110 • Person-centred plans and individual service plans 111 • The development of quality individual plans 114 • Person-centred planning 128 • Conclusion 139 • Learning activities 139 • References 143 •

6

PEOPLE WITH EXTENSIVE TO PERVASIVE SUPPORT NEEDS

145

Vanessa A Green, Jeff Sigafoos, Mark O’Reilly and Michael Arthur-Kelly Learning objectives 145 • Introduction 145 • Characteristics of people with extensive to pervasive support needs 146 • Historical trends and background 153 • Identifying and prioritising support goals 154 • Current best practice in the provision of community-based services 163 • Conclusion 168 • Learning activities 168 • References 169 •

7

POSITIVE BEHAVIOUR SUPPORTS: ISSUES AND PRACTICES

171

Michael Arthur-Kelly Learning objectives 171 • Introduction 171 • Positive behaviour supports 173 • The model and the process 175 • Future directions and priorities 186 • Conclusion 188 • Learning activities 188 • References 189 •

8

COMMUNITY INCLUSION: PEOPLE, NOT JUST PLACES

191

John Annison Learning objectives 191 • Introduction 191 • In the community, but not of it? 192 • My reality, your reality? 197 • Starting with the person 200 • Relationships 204 • Working with communities 206 • Tools for growth and change 209 • Participatory action research 210 • Conclusion 211 • Learning activities 211 • References 213 •

PA RT 3 • W O R K I N G I N D I S A B I L I T Y S E RV I C E S 9

LEGISLATION AND POLICY

217

Ian Dempsey Learning objectives 217 • Introduction 217 • Enabling and protective legislation 218 • Australian disability legislation 221 • Organisational policy 232 • Transferring legislation and policy into practice 235 • Conclusion 236 • Learning activities 237 • References 238 •

10

PROFESSIONAL ETHICS AND DISABILITY SERVICES

241

Keith R McVilly and Trevor R Parmenter Learning objectives 241 • Introduction 241 • Being professional 243 • Being ethical in supporting people with a disability 246 • The ethics of staff–client relationships 258 • Ethics for direct support professionals 261 • Conclusion 267 • Learning activities 268 • References 269 •

11

SERVICES: AVAILABILITY, ISSUES AND MODELS

272

Roger J Stancliffe Learning objectives 272 • Introduction 272 • Generic community services 273 • Specialist disability services 275 • Accommodation support services 278 • Deinstitutionalisation 281 • One size does not fit all 282 • Comparisons of different types of community living 286 • Issues in service provision 288 • Conclusion 290 • Learning activities 290 • References 293 •

12

UNDERSTANDING THE MANAGEMENT CONTEXT

296

AJ (Tony) Shaddock Learning objectives 296 • Introduction 296 • Understanding your organisation 297 • The current managerial context 301 • Quality assurance and accountability 308 • Occupational health and safety 312 • Working with leaders, managers and colleagues 316 • Conclusion 320 • Learning activities 321 • References 322 •

13

STAFF LEARNING AND DEVELOPMENT

324

Karen Nankervis and Jan Matthews Learning objectives 324 • Introduction 324 • Defining performance – what do staff need to know? 326 • Monitoring – being aware of what staff know and do 331 • Instructing – building staff capacity 332 • Evaluation of learning and development 345 • Conclusion 346 • Learning activities 347 • References 350 •

14

COMMUNICATION AND COLLABORATION

352

Greg Robinson Learning objectives 352 • Introduction 352 • Barriers to communication and collaboration 353 • Non-verbal listening and communication 357 • Successful communication in meetings 363 • Conflict and conflict resolution 366 • Collaboration 373 • Collaborating with parents and families 379 • Conclusion 382 • Learning activities 384 • References 387 •

INDEX

390

Contributors

JOHN ANNISON is the Associate Dean (Teaching and Learning), Principal Lecturer in the School of Health and Social Development, and a member of the Institute of Disability Studies at Deakin University. John has had over thirty years’ experience working with people who have either psychiatric or intellectual disabilities. He has worked in the intellectual disability area as a nurse, nurse educator, director of nursing and nursing policy adviser. He also retains involvement with the field through active membership of a number of community organisations. His teaching and research interests are service provision and the philosophy and values underpinning it. MICHAEL ARTHUR-KELLY has had extensive teaching experience in regular and special schools and has been involved with special education and disability support and interest groups throughout his career. He is especially interested in positive approaches to behaviour support, effective programming, behaviour state assessment and communication intervention for people with high support needs. IAN DEMPSEY is a teacher and researcher based at the Centre for Special Education and Disability Studies at the University of Newcastle. He has worked as a high school teacher, a teacher of children and adolescents with autism, the coordinator of a respite care service for people with a disability, and an academic. His research interests include legislation, policy and services in school and community settings for people with a disability, and family empowerment.

x

Community disability services

VANESSA A GREEN is a lecturer in the School of Education at the University of Tasmania. She was previously affiliated with the Centre for Developmental Disability Studies at the University of Sydney. She teaches in the area of early childhood intervention and lifespan development. Her research focuses on peer relations, social competence and early intervention for children with autism and related developmental disabilities. JAN MATTHEWS is the Deputy Director of the Victorian Parenting Centre and the Manager of the Research and Development team. She was formerly Program Leader for Post-graduate Psychology programs at RMIT University, Melbourne, and involved in tertiary education sector for over thirty years as a lecturer and senior lecturer. Her areas of teaching, research, and program development include parenting and family intervention, staff training and program evaluation. IRENE MCENINERY grew up in Wellington in a much loved and loving family. Her life changed following the death of her father and she went to live in a long stay hospital. Her mother visited her regularly in the institution and she talks with great fondness of their relationship. After many years of living in a hospital setting Irene moved to the community. She is now retired and lives in a coastal township enjoying the life of a small community where she is known for her caring nature and interest in others. Irene has many friends and is a well respected member of her local church. She entertains friends with her piano-playing, and corresponds with friends throughout New Zealand and overseas. KEITH MCVILLY is a senior research fellow at the University of Sydney’s Centre for Developmental Disability Studies, and senior clinical psychologist with the Royal Rehabilitation Centre, Sydney. He researches and teaches in quality of life, behaviour support and relationships for adults with intellectual disability. He is the principal researcher on a national project exploring ethics for direct support staff. KAREN NANKERVIS is the Head of Division, Disability Studies, in the School of Health Sciences at RMIT University, Melbourne. She has over 20 years experience in providing supports to people with disabilities as well as in research and tertiary education in the disability sector. Karen has had extensive involvement in the local, national

Contributors

xi

and international disability sector. She has been national president of the Australian Society for the Study of Intellectual Disability, editor of Intellectual Disability Australia, chair of the Disability In-Service Training Support Service Advisory Committee, and a member of the Disability Services Quality Improvement Reference Committee. CHRISTOPHER NEWELL is an associate professor teaching and researching in the School of Medicine, University of Tasmania. A consultant ethicist and a person with a disability, he works with a variety of health and disability services. He is a member of the National Health and Medical Research Council Licensing Committee and the Australian Medical Council, and is an Anglican priest. His directorships include the Consumers’ Health Forum of Australia, the Disability Studies and Research Institute, and Australian General Practice Accreditation. In 2001 he was appointed a Member of the Order of Australia. PATRICIA O’BRIEN is director of the National Institute for the Study of Learning Difficulties, University of Dublin, Trinity College. She was previous the Dean, Faculty of Postgraduate Studies, Auckland University, Epsom Campus, where she specialised in the development and delivery of courses associated with disability studies and special education. Patricia’s research interests and publications cover the areas of deinstitutionalisation, advocacy, the interface between people with intellectual disability and the criminal justice system, and effective pedagogy for students with special needs. MARK O’REILLY is an associate professor in the Department of Special Education at the University of Texas at Austin. He teaches in the areas of autism and developmental disability. His research focuses on the assessment and treatment of self-injury for persons with severe to profound intellectual disability, social skills instruction for persons with mild to moderate intellectual disability, and assistive technology for persons with profound multiple disabilities. TREVOR PARMENTER is Foundation Professor of Developmental Disability in the Faculty of Medicine at the University of Sydney and Director of the Centre for Developmental Disability Studies. He is a member of the Order of Australia; Fellow and Life Member of the Australian College of Educators; Fellow of the American Association on Mental Retardation; and Fellow of the International Association for the Scientific Study of Intellectual Disabilities. He has received

xii

Community disability services

the Distinguished Service Citation of the Australian Society for the Study of Intellectual Disability; the President’s Citation of the American Association on Mental Retardation; the Outstanding International Contributor to the Field Award of the American Association of University Affiliated Programs; and the Distinguished Service Citation of the International Association for the Scientific Study of Intellectual Disabilities. GREG ROBINSON works at the Centre for Special Education and Disability Studies at the University of Newcastle. He coordinates the Master of Special Education program, and is also coordinator of a diagnostic clinic for children and adults with learning disabilities. He has worked as a high school teacher, a school psychologist, a consultant and an academic. His research interests involve interpersonal skills, learning disabilities, literacy problems and parents as support agents. TONY SHADDOCK is a teacher and psychologist who is currently Professor of Special Education at the University of Canberra, where he also heads the Education and Innovation research area. Tony has worked in diagnostic clinics, institutions for people with disabilities and community-based services. He has led a number of multidisciplinary teams providing supports for children and adults with developmental disabilities and their families. Tony’s research interests include communication, legal and self-determination issues and the transition from school to work for people with disabilities. Tony currently directs a number of research products that focus on the education of students with disabilities, particularly those in mainstream settings. JEFF SIGAFOOS is a professor in the School of Education at the University of Tasmania. He teaches in the area of developmental and physical disabilities. He has also been involved in applied intervention research to develop new and more effective procedures for teaching adaptive behaviour to people with developmental and physical disabilities. He has conducted research on the treatment of problem behaviour in people with developmental disabilities. His special area of interest is augmentative and alternative communication. ROGER STANCLIFFE is a researcher at the Centre for Developmental Disability Studies in Sydney. He teaches in the postgraduate developmental disability program at the University of Sydney, and is a consultant research associate to the Research and Training Center on

Contributors

xiii

Community Living at the University of Minnesota. Roger has had experience as a psychologist, advocate, service manager, consultant, board member of non-government organisations, member of the NSW Guardianship Tribunal, member of government advisory councils and researcher. His research interests include choice, selfdetermination, community living, individual planning, deinstitutionalisation and cost effectiveness of services. He is the current editor of the Journal of Intellectual & Developmental Disability. AVRIL THESING works as a researcher and lecturer at the University of Auckland, New Zealand. She first met Irene McEniery (one of the contributors to this book) when she was involved in a follow-up study of people in New Zealand who had been institutionalised. Since then she has become a friend of Irene’s and has collaborated with her on the writing of Irene’s life story, part of which has been used in chapter 2.

Preface

Disability in contemporary society The past decade has seen an unprecedented level of debate about the nature of disability, and about how modern societies perceive and respond to disability. Discussion about disability has traditionally been dominated by ideas of individual deficiency based on medical, social and psychological need. However, there is a growing awareness that a more holistic approach to disability – one that examines disability in the context of society – also has much to offer. Discussing whether one approach to disability is better than the other is not the purpose of this book. We take the position that both views of disability have their advantages and their disadvantages, and that it is important to have an understanding of a variety of approaches and models of support in disability services. Although recent debate about disability has created an environment of uncertainty on a number of disability issues, it has also clarified an important principle about the ways in which society supports people with a disability. This principle is that people with a disability are active participants and key players in the communities they live in. This means that people with a disability are regarded as partners in the delivery of support services, rather than as passive recipients of those services. This principle creates challenges for professionals who work with people with a disability, because there are still many barriers to its successful implementation.

xvi

Community disability services

Theory, research and practice In preparing people to work in disability services, there can be a temptation to tell them what to do in the range of situations they may encounter. However, simply concentrating on what to do in the practice of day-to-day work is not practical because of the broad nature of disability services, the diverse needs of people with a disability, and changing workplace policies and requirements. Instead, this book provides an integrated presentation of the philosophies and theories that guide what we do, the results of relevant research in a variety of disciplines, and how both the theories and research guide what we do in disability services. This integration is supported by practical case studies, and by a wide range of individual, group and discussion activities in each chapter. The names of the people discussed in the case studies have been changed to preserve their anonymity.

The purpose of this book Most disability service users have a developmental disability – that is, a disability that develops during the developmental period (to about the age of 18 years). This book is intended as a resource for people who are working, or studying to work, in disability services, so it focuses on the individual, organisational and societal issues that affect the lives of people with disabilities in general, but primarily of those with developmental disabilities. Our hope is to develop informed and critical thinkers who are capable of reflecting on relevant theory and research to address many different workplace issues and demands. Each chapter contains learning objectives that the reader may be expected to achieve by working through the text and the activities. However, the book’s primary purpose is to assist in the development of a highly trained workforce in modern community disability services. As such, it will be useful at both the pre-service level and as a valuable resource in the professional development of people currently working in disability services.

What the book does not do This book does not take a categorical approach to disability. While specific knowledge and skills may be required to work with people with

Preface

xvii

some particular disabilities, we recognise that there are more similarities than there are differences between the needs of people with a disability. Case studies in the chapters address specific disabilities. The book does not take a categorical approach to disability services. Although disability services are typically organised into accommodation, employment and other categories, the principles of service provision are essentially the same across these categories. Again the case studies will assist in embedding the principles into practice. The book does not take a particular philosophical approach to disability. We value an eclectic approach that draws on a range of views of disability and of models of support. This approach is based on the understanding, synthesis and reasoned application of philosophies and support models in the context of enhancing the participation of people with a disability in their communities.

How the book is organised This book takes an evidence-based approach that provides a basis for practices informed by research that demonstrates the value and effectiveness of various approaches, strategies and interventions. ‘Research’ in this context encompasses a broad range of activities designed for collecting, reflecting on and analysing information. Research methods can be empirical as well as action-based, or they can take other non-traditional approaches. In taking an evidencebased approach this book presents information derived from the research literature and the experiences of disability support users, and applies that knowledge to practice situations. Readers will have the opportunity to reflect on the issues and practices that affect people with disabilities. They will also have opportunities to develop their own capability to turn knowledge into practice. They will be able to apply the knowledge they acquire through case studies, reflection and discussion questions, and action learning activities. This book is divided into three parts: • Disability and modern society • Working with people with disability • Working in disability services. These parts mirror the contemporary philosophies and debates in disability within a practice framework that reflects the impact of

xviii

Community disability services

individual, organisational and community capacity on the process and level of disablement. In part 1 these conceptualisations and understandings are explored and challenged according to a diversity of models, debates and views of disability. This part includes the lived experience and aspirations of people with disabilities, and explores the contemporary guiding principles that underpin community and service responses. Approaches to classification and identification of individual support needs are examined within a framework of individual aspirations. Part 2 focuses on the supports that can be provided to people with disabilities to develop individual capacity and facilitate their participation and citizenship. The focus is on the development of the skills and knowledge required by those working with people with disabilities to enable them to live with quality and dignity. The relationship between person-centred planning and person-centred action is explored, as well as the skills and knowledge required to plan and implement effective, evidence-based responses to high and complex support needs, including multiple disabilities and challenging behaviour. The balance between building individual capacity and the need for communities to embrace and support people with diverse needs and abilities is addressed through strategies for community development that result in genuine community participation. The role and contribution of the disability organisation system is an important consideration in providing support. Part 3 examines the relationship between quality disability services and systems and the lived experience of disability support users. Each chapter is based on the knowledge that the gap between the intent of policies and philosophies and the lived experience of people with disabilities are either closed or widened by organisational factors. These organisational factors can be the determinant of an organisation being truly ‘client driven’. To this end, the principles of ethical practice are considered, and existing service models explored and challenged. Effective methods of promoting and maintaining staff learning and development in the workplace are required to ensure quality service delivery. The final part of the book also provides information and learning activities on maintaining and developing worker competency within a framework of supervision and development, and organisational leadership and management. Ian Dempsey and Karen Nankervis

PA RT 1

DISABILITY AND MODERN SOCIETY

1

Conceptions of disability Ian Dempsey and Karen Nankervis

Learning objectives After reading this chapter and completing the activities you should be able to: • understand traditional and contemporary notions of ‘disability’ in various societies • understand how modern society responds to the needs and aspirations of people with a disability • reflect on your own attitudes and responses to disability • demonstrate an awareness of: –

common support needs of people with a disability

–

classification systems used to describe people with a disability

–

types of services for people with a disability.

Introduction It is important to start with a discussion of what we mean by the word ‘disability’, and how our understanding of disability not only changes over time, but is also the subject of continued debate. This chapter explains how definitions and responses to people with disabilities have evolved in line with changes in society in general – albeit for some people with disabilities at a significantly slower rate

4

Part 1 • Disability and modern society

than for other minority groups. The chapter also discusses the profile of disability service users, and introduces the major influences on current and future service delivery.

The influence of society Disability is part of the experience of many people in our society. The concept of disability, therefore, is not isolated from other social influences. According to Mercer (1992), paradigms (models) of disability are influenced by the beliefs, values and techniques of the members of society at any particular time, and, in particular, by the dominant beliefs and assumptions about the nature of society. In order to explore our understanding of disability, then, we must look at disability in the context of society in general. Mercer considers that our beliefs about the nature of the society we live in can be presented on an axis, with homogeneous at one extreme and heterogeneous at the other. This axis is illustrated in figure 1.1. FIGURE 1.1 THE NATURE OF SOCIETY (adapted from Mercer, 1992)

Heterogeneous— conflictual

Nature of society

Homogeneous— consensual

In a homogeneous society the assumption is that there is a common cultural background and common values, and that individuals need to conform to be accepted and to fit in, taking up roles that are respected according to those values. Deviance (to differ from the norm) is regarded as a potential source of disruption to the smooth running of a homogeneous society. In a heterogeneous society there is potential for conflict between different social classes and ethnic groups. A heterogeneous society may be characterised by a struggle of various groups for political and economic dominance (Mercer, 1992), in particular the struggle by minority groups (such as people with a disability) for recognition and equal human and civil rights.

Conceptions of disability

5

The nature of society is constantly changing, and movement in our understanding and tolerance of difference has been quite marked over recent years. For example, attitudes toward and acceptance of single parents and same sex couples have changed through increased knowledge and through social and political activism. Some examples of the changes in our society are presented in table 1.1, using Mercer’s axis of the nature of society. TABLE 1.1 CHARACTERISTICS OF MODERN AUSTRALIAN SOCIETY Nature of society

Social policy

Homogeneous society

Heterogeneous society

White Australia policy

multiculturalism

(pre 1970s) Outcomes and attitudes

assimilation prejudice

(from 1970s) diversity pride

An example of a social desire to enshrine homogeneity was the White Australia policy, supported by the Australian Immigration Restriction Act 1901, the purpose of which was to retain the dominant white European profile of Australians. (At the time the presence and contribution of indigenous Australians was largely ignored, and they were not seen as part of mainstream society). The White Australia policy aimed to bring to Australia only people who would assimilate or blend in with what was regarded as a British/European society. Non-European immigrants were excluded through such means as a requirement to pass a written dictation test in a European language (DIMIA, 2004). As a result of the policy most non-indigenous Australians had a European background, and it was expected that they would fit in by adopting the language and customs of their new country. Those who retained cultural differences, such as speaking in their native language, were often treated with prejudice or lack of tolerance. Children of immigrant parents often shunned their heritage so they would fit in with their Australian counterparts and avoid ostracism. In such a homogeneous society cultural difference was not a valued attribute. In a heterogeneous society, there is recognition that the community is made up of different groups with different cultural influences.

6

Part 1 • Disability and modern society

Multiculturalism, a social policy developed during the 1970s whereby different cultural identities are valued and embraced, is a key aspect of this recognition. Diversity, not assimilation, is currently valued in Australian society, and there is pride in belonging to different cultural backgrounds. However, it is also accepted that conflict may be an inherent element of a heterogeneous society where there is unequal power between groups and clashes in the struggle for acceptance and control (Mercer, 1992). We cannot assume that at any one time our societies are exclusively at either end of Mercer’s axis. In fact, we are currently in an age challenged by the tension between homogeneous and heterogeneous society, balancing the construction of a common culture against the promotion of diversity. Single events, for instance the terrorist attacks of September 11 2001 in the US and 2002 in Bali, can swing the balance. How does all this relate to approaches to disability? In all issues affecting society, when knowledge is developed or positions successfully argued there can be changes in attitudes and approaches. As society’s values in general change, so do conceptions of and responses to disability. Mercer argues that in a homogeneous society people with disabilities are seen as different, and the general aim of interventions and supports is to make the person with a disability more functional (useful) for society. In a heterogeneous society, where diversity is valued, people with disabilities can be seen as a minority for whom, and by whom, social action is required to improve their social, economic and political status. Some approaches to disability according to the values of society are illustrated in table 1.2.

TABLE 1.2 THE VALUES OF SOCIETY AND APPROACHES TO DISABILITY Homogeneous society assimilation prejudice and shame oralism (lip reading) personal problem segregation special treatment

Heterogeneous society diversity pride manualism (signing) public issue inclusion and participation civil rights

Conceptions of disability

7

A telling example of an approach to disability that reflects the nature of society relates to people who are deaf. Debates about the nature of deafness can be presented as being about dominant culture (the hearing community and hearing educators) and less dominant groups (the deaf community). The clash between the hearing community and the deaf community is often portrayed in terms of different approaches to educating people who are deaf – oralism (lip reading) versus manualism (the use of signing for communication). Advocates of oralism regarded the use of hand signs and gestures as ‘animalistic’, and they argued for the need to bring people who are deaf ‘into the fold’ to be united with the larger community (Baynton, 1998). It has been argued that attempts at mainstreaming and inclusion may do more harm than good to children who are deaf (Baynton, 1998). Nineteenth century segregated residential schools for the deaf are considered to have contributed to and promoted ’deaf culture’, whereas the modern classroom that promotes inclusion may isolate the deaf child in a room full of hearing children. In the mainstream school deaf children may be only able to communicate through a translator. Separated by language, they may be unable to join the educational community in the same meaningful way as earlier generations of deaf people. Over the years definitions of disability have changed as the perceptions of society have altered and models of disability have evolved (see Mercer, 1992; Sarason & Doris, 1979). However, it must be remembered that definitions of disability describe not individuals but society’s perceptions and expectations of people associated with that definition or classification. Definitions can be extremely powerful because they can determine community and service responses, such as the number and types of opportunities made available to people with disabilities. Definitions and understandings of disability, and the responses of society to disability, are discussed in what follows.

Support needs and classification systems A typical human response to the need to understand the unknown, or to clarify the more familiar, is to count, to define and to classify. For example, when governments are confronted with a problem

8

Part 1 • Disability and modern society

such as a general water shortage they may measure the extent of water consumption, identify problem areas, and advertise what is no longer appropriate water use (such as hosing a driveway). This approach of counting, defining and classifying works well as a means of understanding the scope of an issue or a problem, and for checking the success of responses to it. However, using this common strategy in human services, such as services for people with a disability, can have unintended outcomes. One unfortunate consequence of using classification and counting systems in this area is that they can turn people with a disability – who we are seeking to support – into little more than numbers and categories. So while we argue that we intend to help such people, we may dehumanise them in our need to categorise and count. The problem can be illustrated by the use of language about disability. Consider the statement: ‘I want you to work with the Downs’ group today.’ The statement attempts to convey useful information, but in the process it may reinforce stereotyped views of disability. Specifically, it doesn’t follow the principle of ‘people first’. This principle states that it is essential to recognise that individuals are people first, and that disability may be just one of a person’s characteristics, not the overriding characteristic. So the statement could be changed to refer to ‘the group of people with Down syndrome’, or ‘the group working on linen pressing’, because in many situations it is not necessary to categorise the group on the basis of disability. Later in this chapter we’ll discuss types of disability and their prevalence – keeping in mind that it is essential when examining the classification and the demographics of disability to remember that the numbers and the labels apply to real people with hopes, with rights, and with dignity.

Defining disability Disability is a complex notion, and it is undergoing considerable debate and change, as later sections of this chapter show (see also Donoghue, 2003; Greenspan & Switzky, 2003). It is impossible to devise a single universal definition (Fujiura & Rutkowski-Kmitta, 2001).This claim may seem odd because disability is a term commonly used in our society, and all of us have had some experience of it, even if this experience is indirect.

Conceptions of disability

9

The following questions may help you to understand the complexity and uncertainty involved in defining disability: • What impairments and anomalies should be regarded as a disability? Should they be limited to obvious physical and cognitive conditions, or should we include less obvious conditions such as attention deficits and learning difficulties? • At what level should an impairment be regarded as a disability? For example, when does a visual impairment become a disability? • Should the diagnosis of disability depend on precise measurement or on the subjective judgement of the affected person or of others? • To what extent should we acknowledge the contribution of the environment? In some communities of people who are deaf, for example, people don’t consider that they have a disability because they live in an environment where deafness is the norm. Broadly speaking, systems of defining disability follow one of three approaches. These are: • illness or impairment-based systems • systems that focus on life activities that may be affected by impairment • systems that recognise the interaction between the person and the physical and social environment they live in. Each has its advantages and its limitations. The three approaches are briefly discussed below. Impairment-based systems Impairment-based systems for defining disability concentrate on the person and their condition (for example, an organ malfunction or the loss of a limb). This approach has been commonly associated with the medical model of disability, which incorporates precise measurements of deficiency (Llewellyn & Hogan, 2000). It assumes that: • an understanding of the person’s physical and other characteristics is crucial to assisting that person • it is important that we know the extent to which the person differs from the ‘normal’ population. This approach typically leads to the creation of broad disability categories such as intellectual disability, physical disability and

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sensory disability (for examples of this approach to describing disability see Cocchiarella & Andersson, 2001; Frank & Elliott, 2000; Lewis, 2002). One area in which it has been helpful is in identifying the health-care needs of people with a disability. An example of this approach to defining disability is the International Statistical Classification of Diseases and Related Health Problems (ICD–10) produced by the World Health Organisation (WHO) (2001a). Systems that focus on life activities The second method of defining disability focuses on the person’s functional limitations and the impact of these limitations on activities the person wishes to engage in. If a limitation significantly restricts a person in engaging in a socially relevant activity (such as shopping or using public transport), they may be regarded as having a disability. An advantage of this approach is that it extends our understanding of disability beyond the domain of physical or mental conditions. The most recent surveys of disability, ageing and carers by the Australian Bureau of Statistics (1993, 1998) have used activity limitations as the basis for defining disability. Holistic systems The third approach to defining disability, one that acknowledges the relevance of both specific impairments and activity/participation limFIGURE 1.2 COMPONENTS OF THE ICF AND THEIR INTERACTION (WHO, 2001b) Health condition (disorder or disease)

Body functions and structures

Environmental factors

Activity

Participation

Personal factors

Conceptions of disability

11

itations, is best represented in the most recent classification system developed by WHO (2001b), the International Classification of Functioning, Disability and Health (ICF). An advantage of this approach is that it can lead to a more holistic understanding of disability. Figure 1.2, opposite, shows the interaction between the different components of the ICF. Briefly, the presence of disability depends on a complex interaction between: • impairment • activity and/or participation limitation • the person’s characteristics • the person’s environment. For example, an impairment such as the loss of a limb may contribute little to a disability if through the use of a prothesis the person experiences only minor restriction on their activities and their participation in the community. On the other hand, a non-supportive environment (for example, one that lacks physical access options to buildings and transport) may contribute significantly to the disability of someone with a mobility impairment. The ICF only covers situations that are health or impairment related. For example, a participation restriction due to socioeconomic status is not considered a disability because the disadvantage is not caused by a health-related condition.

Theories of disability This section discusses two approaches to disability: the individual approach and the social approach. These approaches have been influential in exploring our understanding of disability, and have given rise to models of service delivery that in turn have influenced the understanding of disability in the community. However, there is no single approach to disability that provides all the answers or adequately addresses all the issues. The notion of disability as a paradox is also discussed. The individual approach to disability The individual approach to disability presents the person as a ‘sufferer’ whose disability is a private problem or tragedy (Borsay, 1986;

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Dalley, 1991). In this model, the presence of impairment or disability demonstrates that there is something wrong with the person, and it is thus their responsibility to fit into society (Oliver, 1990). Also, disability may be readily measured and diagnosed. There is little or no recognition of the existence of social barriers to full participation by people with disabilities. The medical model

Up until the last two decades, discussion about disability was dominated by what is commonly called the medical model, which is considered to fit within the individual approach. A key feature of this approach is the use of measurement strategies (for example, IQ tests and checklists of observed behaviour) to test for abnormality, which is defined in terms of deviation from the normal state. For example, the 2002 American Association of Mental Retardation’s definition of mental retardation (termed intellectual disability in Australia) requires, in part, a verified IQ score of 70 points or below. Diagnosis of other disabilities such as blindness, deafness, Asperger syndrome and autism also relies on an assessment of deficiency. The medical model has helped practitioners provide valuable support to people with a disability, and continues to do so. Many significant improvements in disability health and therapy care stem from the use of this model. However, it has come under some criticism because: • it is said to focus on only one aspect of the person with a disability – their deficiencies • it does not adequately account for the way in which disability is constructed by society (Scully, 2002). The social approach to disability An alternative approach, the social model, argues that the way in which society responds to disability influences the experience of disability (Gill, 2001). In this model, disease or impairment is less relevant than the dominant social structures (such as laws and welfare systems), and their response (or lack of it) to people with a disability. For example, the social model has had much to say about the ways in which people with a disability may be oppressed by society through exclusion and discrimination (Altman, 2001).

Conceptions of disability

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This approach identifies the origin of disability in the limitations imposed on the person by society. Stone (1985) has suggested that disability is the result of political conflict in relation to criteria used for the distribution of community funds, and for deciding who should receive funds and support. In the social model, disability is a social construct in which society labels those who are different from the norm. Services are established that reinforce those differences and generate self-fulfilling prophecies, such as the creation of dependency (Oliver, 1990). This has been expressed by people with physical disabilities in the following way: In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society. Disabled people are therefore an oppressed group in society. (Union of the Physically Impaired Against Segregation, cited in Oliver, 1996, p. 22)

The social approach has its foundation in a subjective view of reality, with proponents insisting that as disability is a social construct its definition will vary from one society to another, as well as over time. The construct occurs in a heterogeneous society where more powerful groups determine societal norms and dominate the less powerful, such as people with impairments (Mercer, 1992). As these norms may not be achieved by less powerful people, such people can be viewed as inadequate and considered ineligible for full participation in society. The western concept of disability arose out of the English poor laws to allow differentiation between those unable to work and those unwilling to work (Oliver, 1990). Those unable to work were classed as ‘defectives’; they were seen to be deserving of charity and pity, but not entitled to the status of full members of society with its attendant rights and responsibilities. Consistent with the oppression premise of the social approach, Sarason and Doris (1979) regarded disability as being a concept that serves two purposes: • it differentiates and separates a group of people, and • it justifies social action in regard to those who are set apart, not only physically but also conceptually, for special attention or services. In this view, defining people as ‘disabled’ can be regarded as a mechanism of social control.

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The social model makes a number of assertions about the construct of disability. These can be summarised as follows: • Disabled people are an oppressed group like other minority groups in society, and the label of disability is used to control a group of people who challenge the norms of society. • ‘Disability’ is the social oppression, not the form of impairment. • The term ‘disabled people’ should be used instead of ‘people with a disability’, as this is an accurate description of people subjected to a process of disablement. • There must be a pursuit of social change rather than medical cure or rehabilitation. • Disabled people aren’t at fault, society is. • Since disability is a creation of society there should be societal, not individual, change. • There must be a focus on rights, not on charity (Shakespeare & Watson, 2002). More recently, postmodern theories have begun to influence our understanding of disability. Corker and Shakespeare (2002) argue that both the medical and the social model seek to explain disability universally, and end up creating totalizing, meta-historical narratives that exclude important dimensions of disabled people’s lives and of their knowledge. (p. 15)

This perspective recognises that there is a variety of understandings rather than a single truth, and that these understandings are constantly changing. For example, 27-year-old David may be known to his occupational therapist as a person experiencing severe cerebral palsy who requires a motorised wheelchair; to the manager of the marketing company he works for as a reliable and good-natured employee; and to the corner store owner who thinks his wheelchair impedes the movement of others as an irritating customer. At the moment, our understandings of disability are in a process of change. A useful way to respond to this uncertainty is to recognise that all these different approaches to disability have their advantages and their disadvantages, and that our challenge as professionals is to use the best aspects of each approach when supporting people with a disability (Shakespeare & Watson, 2002).

Conceptions of disability

15

Disability as a paradox When disability is seen as a problem for the individual, it can be viewed as the individual’s responsibility, with little obligation for society to provide support. When disability is regarded as a creation of an unequal society, it becomes the responsibility of society to provide support and rectify those elements that create disabling environments. There are partial truths in both approaches. Finkelstein (1991) enunciated these with the identification of disability as a paradox involving the functioning ability of the individual as well as the social barriers imposed by society. More recently, the assumption that either an individual or a social model of disability is correct is being challenged. There has been a realisation that the wholesale adoption of either model is an inadequate response to a complex issue that is the result of the interplay between individual experiences and impairments and the nature and capacity of society. As Shakespeare and Erickson (2000) explain: An adequate social theory of disability would include all the dimensions of disabled person’s experiences: bodily, psychological, cultural, social, political, rather than claiming that disability is either medical or social. (Cited in Shakespeare & Watson, 2002, p. 19)

So the question remains: ‘What is disability?’ Disability has been seen as either a condition that exists in a person, or the result of the limitations imposed on that person by a society that does not embrace diversity. In both these views, disability is part of a dichotomy – either it exists or it doesn’t. Disability can also be viewed as existing on a continuum, with polar opposites on a scale with varying degrees in between (Shakespeare & Watson, 2002). The view promoted by Finkelstein (1991) is that disability is neither a dichotomy nor a continuum, but a paradox. The paradox approach recognises that impairment occurs at the level of the person, but the process of disablement is influenced by both the capacity of the person and the capacity of society to support people with diverse needs and abilities. This relationship is illustrated in figure 1.3. At the individual level, the process of disablement (and the resulting level of disability) is influenced both by the nature of the impairment and by the person’s capacities, motivation and preferences. At the societal level, the process of disablement is influenced

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FIGURE 1.3 THE PARADOX OF DISABILITY

Individual capacity (eg, impairment and ability)

Level of disability (the difference between individual and community capacity)

Community capacity (eg, attitudes and resources)

by community attitudes, financial priorities, the integrity of the community and the nature of society. The situation is summed up by Shakespeare and Watson, who state: We entirely concur with the political imperative to remove disabling barriers. We also believe that the overwhelming stress on medical research, corrective surgery and rehabilitation at all costs is misguided. The priority should be social change and barrier removal as social models of disability have suggested. Yet there is no reason why appropriate action on impairment cannot co-exist with action to remove disabling environments and practices. People are disabled both by social barriers and their bodies. (2002, p. 15)

It needs to be recognised that the perspectives and experiences of people with disabilities are not universal, and that disability is complex and multidimensional and requires approaches, models and responses that reflect this.

The incidence of disability How you measure the incidence of disability depends in large part on how you define it. Despite this, useful statements can be made about the extent and nature of disability in the general population, and about some trends in the incidence of disability. The Australian Institute of Health and Welfare (AIHW) (2003) has reported on the incidence of five disability categories: ‘intellectual’, ‘psychiatric’, ‘sensory/speech’, ‘acquired brain injury’ and ‘physical and diverse causes’. Table 1.3 shows estimates of the incidence of the main disability groups as a percentage of the Australian population. A person is included in a disability group when that disability was reported as the main disabling condition.

Conceptions of disability

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TABLE 1.3 ESTIMATES OF MAIN DISABILITY GROUPS IN AUSTRALIA IN 1998 AS A PERCENTAGE OF THE AUSTRALIAN POPULATION (AIHW, 2003) Disability group

Aged under 65 (%) Aged over 65 (%)

All ages (%)

Intellectual Psychiatric Sensory/speech Acquired brain injury Physical/diverse

1.3 1.2 1.4 0.2 10.4

0.2 3.8 8.5 0.2 41.2

1.1 1.5 2.3 0.2 14.2

Total

14.5

53.9

19.3

Some patterns to note from these data are the frequency of reported physical disability in the population, and the increased incidence of disability as the population ages. AIHW noted that there were marked increases in the reported rates of intellectual and psychiatric conditions, as well as increases in some sensory and physical conditions, over the period 1993 to 1998. Data from the United Nations (UN) on the prevalence of disability worldwide shows that there is much variation between countries in the rate at which disability is reported, and that the reported rate of disability is generally much higher in western countries. The reported average prevalence rate of disability in these countries is 14 per cent, with rates varying from country to country from around 8 per cent to around 21 per cent (UN, 2003a). At present, and for the foreseeable future, it is difficult to make meaningful international comparisons of the prevalence of disability because of differences in the conception of and the collection of data on disability between countries. The UN (2003b) is encouraging countries to standardise how they collect information about disability, and to use the ICF as a means of achieving some consistency. Even though intellectual and developmental disability comprises only a small proportion of the overall incidence of disability, in Australia intellectual disability is the most commonly reported type for disability service users (Department of Human Services, 2001). Across Australia, over 60 percent of disability service users have an intellectual/learning disability (AIHW, 2002; Black & Madden, 1995). The next largest group of service users (12 per cent) have a physical disability (AIHW, 2002).

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Recent influences There is not the space here for a detailed discussion of the rich history of how societies have responded to disability. (If you are interested you might like to explore the work of Braddock and Parish (2001) and of the Disability History Museum (Straight Ahead Pictures, 2004)). However, it is important to consider recent trends that have influenced how disability services are provided in many western countries. Several of these trends are introduced below. Human rights and legislation In 1971, the UN issued the Declaration of the General and Specific Rights of the Mentally Retarded. A more recent UN initiative in this area was the adoption in 1993 of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (UN, 1993). Although not a legally binding instrument, the Standard Rules provides strong moral and political encouragement to governments to take action to gain equal opportunities for people with disabilities. International declarations on human rights for people with a disability have formed the basis for disability-specific legislation in many countries. In Australia, the relevant legislation is the Disability Discrimination Act, which makes it illegal to discriminate against someone on the basis of their disability across the full range of life activities (accommodation, employment, transport and so on). This and other relevant legislation is described in chapter 9. Awareness of the rights of people with a disability has also been increased through the self-advocacy movement (Barnartt, Schriner & Scotch, 2001), and by the adoption of principles such as normalisation and social role valorisation, and the quality of life movement. These and other principles are examined in chapter 3. While declarations and laws are critical components of a just society, they are not enough, on their own, to guarantee equal rights for people with a disability. As Parmenter (2001) explains, without practitioners who care for the people they support, statements and laws may do little to overcome the disadvantage of disability. In short, people may be forced to comply, but they cannot be forced to care. Chapter 10 explores ethical issues in disability services in more detail.

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Self-determination and person-centred approaches In the past few decades many western countries have been engaged in a process of deinstitutionalisation – the process of closing residential institutions for people with a disability and providing those people with accommodation in the community. One lesson learned from this process is that the challenge is not just to physically place people in the community, but also to foster the engagement of those people with their communities (Stancliffe, 2002). Examples of such engagement are the use of a wide range of community activities, and interaction with a wide range of other people. The many people with a disability who continue to live with their families face the same challenge. Another lesson learned has been that promoting independence, or even semi-independence, for people with a disability requires an understanding of the way in which disability professionals work with others. Two concepts have dominated discussion in this area: empowerment (Henderson & Pochin, 2001) and self-determination (Wehmeyer & Garner, 2003). Both concepts address a desire to promote an understanding of, and some control over, the life circumstances of people with a disability by those people themselves. Crucial to the promotion of empowerment and self-determination is that professionals give up some power in their relationship with their clients. Examples of strategies that can be used to promote self-determination and empowerment are: • providing genuine opportunities for choice • giving people a say in important decisions • making people aware of options • providing the skills to plan, to set goals, and to reflect on achievement (Wehmeyer & Shalock, 2001). Box 1.1 gives an example of how these principles may be applied in a disability service.

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BOX 1.1 • THE WORKERS’ ADVISORY COMMITTEE AT DELANDO CORPORATION Delando Corporation is a supported employment organisation funded by the Commonwealth Department of Family and Community Services. Delando facilitates the employment of around fifty people with a disability in a variety of settings, including enclaves in three different businesses (a large retail store, a commercial laundry and a large educational institution), a grounds maintenance work crew and an opportunity shop. Like other disability services, Delando must follow a range of standards designed to ensure that the service meets the needs of its employees. One of these standards deals with the opportunity for employees to participate as fully as possible in making decisions about their work activities. A way in which Delando addresses this standard is by conducting bimonthly Workers’ Advisory Committee meetings that report directly to Delando’s board of directors. Employees at each work site elect a representative who, after a meeting at the work site, reports to the committee on workplace issues. To help employees discuss and report on workplace issues, Delando conducts regular training sessions on workers’ rights and responsibilities and on occupational health and safety issues. Each representative uses an ‘easy read’ report sheet to record matters they want discussed at the committee meeting. They can use a scribe to record these matters if they wish. Key questions that appear on the report sheet include: •

Do you receive good on-the-job training?

•

Are you treated fairly and with respect by your supervisor and your co-workers?

•

Do you receive proper wages for the work you do?

•

Is your equipment in safe working order?

The committee meeting is attended by the general manager and a representative from the board. The general manager is obliged to deal with any issues raised at the meeting, and must report on how the issues were addressed at regular board meetings.

A person-centred approach

Principles of empowerment and self-determination can be put into place in disability services by following a person-centred approach. The basis of this approach is to build a meaningful picture of a person that can be used in planning supports (Holburn & Vietze, 2002). The postmodern approach to disability discussed on page 14 is relevant here. There are many ways of knowing the people with a disability we support, but if our knowing is limited to just their

Conceptions of disability

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physical care needs, for example, we may be attempting to meet their needs using an unnecessarily limited frame of reference. Without a clear understanding of the person – their strengths, their interests, their needs, and their vision for the future – professionals are not in a good position to customise what they do to meet some of those needs and desires. Questions we might ask in developing person-centered plans for people we work with include: • Who is this person? • What is their story? • What are their gifts, interests and talents? • What lifestyle do they want? • What are their dreams? • What do they desire for their future? Economic rationalism Shalock (1999) argues that disability services are being challenged to provide quality services in an environment of two potentially opposed forces: person-centred values and economic-based constraints. Person-centered approaches were discussed in the previous section. Examples of economic-based constraints are the need to: • demonstrate increased efficiency • justify the use of government funding • show measurable consumer outcomes. None of these may be undesirable in its own right. Indeed, they may lead to a greater emphasis on checking that a service is actually meeting a client’s needs. However, tensions can arise when disability services do not have the financial resources to adequately meet the needs of the people who use them. Some commentators have been highly critical of this direction in the management of disability services. For example, Parmenter (2001) claimed that human services are now being operated as businesses replete with a panoply of ‘business speak’, managerialistic jargon that tends to create a veneer of efficiency but is often devoid of the warmth of sound human relationships. (p. 288)

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In other words, some aspects of good business practice for profitmaking organisations may not be desirable practice for not-forprofit disability services.

Community supports for people with a disability It is important not only to be aware of the recent trends influencing disability services, but also to acknowledge that new trends and influences will continue to develop in the future. This potential for change may create some uncertainty, but there are many aspects of supporting people with a disability that are relatively constant. These are illustrated in figure 1.4. FIGURE 1.4 DISABILITY SUPPORTS AND INCLUSION IN THE COMMUNITY

No specific support

Limited support

Broad support

Quality of life outcomes in accomodation, employment and social activities

People with a disability may need support across a wide continuum, from no specific support to specific and extensive supports. For example, a couple with intellectual disability may need some short-term advice from an advocacy service about how to retrieve the bond money from their rented accommodation, but apart from this they may live and participate in the community quite independently. At the other end of the spectrum, Sasha, who has a severe physical disability, needs ongoing intensive assistance with her personal care. Regardless of the type or the level of support provided, its purpose is to enhance quality of life outcomes across a wide range of areas. Returning to Sasha: although she requires a broad range of supports in the accommodation area to meet her personal care needs,

Conceptions of disability

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she needs less support in social and recreational settings in the community because she uses a motorised wheelchair, and is able to communicate with others independently. The pattern of supports is relevant across the lifespan. Although the outcomes from school education for children with a disability may differ from the outcomes we might work towards for adults with a disability, the philosophy of supports is the same. For example, school students’ outcomes (particularly in primary and early high school) may be oriented towards literacy and numeracy skills. However, the ultimate goal of school is to help people lead as independent a life in the community as possible. The principles of self-determination and person-centered planning are relevant across the lifespan as a means of developing autonomy and enhancing life outcomes. In this context, the role of workers and services supporting people with disabilities is to help them and their families build their own individual capacity and, therefore, personal empowerment, as well as building the capacity of society through activities such as community development. Those employed in the disability sector also have a responsibility to build their own individual capacity by: • gaining personal awareness • questioning their own values, attitudes and stereotypes • gaining knowledge and skills such as an understanding of social systems, and the development and implementation of personcentred plans. The focus of this book is on achieving these objectives for people with a disability and those who are in the business of supporting them.

Learning activities 1

Identify and discuss some of the advantages and disadvantages of the three different approaches to defining disability outlined in this chapter.

2

Consider the components of disability used by WHO in the International classification of functioning, disability and health (see figure 1.2). How might these components relate to people with a disability who you know or have worked with?

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3

Identify some ways in which disability services have been affected by recent influences on the way we support people with a disability. You may find it helpful to think about a disability service you know.

4

Locate sources of information about disability services in your community. For example, you may find listings from the websites of relevant Commonwealth and state government departments, from your local council, and from the telephone directory.

5

Debate the following claim from Shakespeare and Watson (2002, p. 15): ‘The priority should be social change and barrier removal as social models of disability have suggested’.

References AAMR see American Association on Mental Retardation ABS see Australian Bureau of Statistics AIHW see Australian Institute of Health and Welfare Altman, B. M. (2001). Disability definitions, models, classification schemes, and applications. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds), Handbook of disability studies (pp. 97–122). Thousand Oaks, CA: Sage. American Association on Mental Retardation (2002). Mental retardation: definition, classification, and systems of supports. Washington, DC: AAMR. Australian Bureau of Statistics (1993). Survey of disability, ageing and carers. Canberra: ABS. Australian Bureau of Statistics (1998). Survey of disability, ageing and carers. Canberra: ABS. Australian Institute of Health and Welfare (2002). Disability support services 2002: First national results on services provided under the CSDA. Canberra: AIHW. Australian Institute of Health and Welfare (2003). Disability prevalence and trends. Retrieved February 2, 2004 from Barnartt, S., Schriner, K. & Scotch, R. (2001). Advocacy and political action. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds), Handbook of disability studies (pp. 430–49). Thousand Oaks, CA: Sage. Baynton, D. C. (1998). Forbidden signs: American culture and the campaign against sign language. Chicago: University of Chicago Press. Black, K. & Madden, R. (1995). Commonwealth/State Disability Agreement national minimum data set: Report on the 1994 full-scale pilot test. Canberra: AIHW. Borsay, A. (1986). Personal trouble or public issue? Towards a model of policy for people with physical and mental disabilities. Disability, Handicap & Society, 1, 179–95. Braddock, D. L. & Parish, S. L. (2001). An institutional history of disability. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds), Handbook of disability studies (pp. 11–68). Thousand Oaks, CA: Sage. Cocchiarella, L. & Andersson, G. B. J. (2001). Guides to the evaluation of permanent impairment (5th edn). Chicago: AMA Press. Corker, M. & Shakespeare, T. (2002). Mapping the terrain. In M. Corker & T. Shakespeare (Eds), Disability/postmodernity (pp. 1–17). London: Continuum. Dalley, G. (1991). Disability and social policy. London: Policy Studies Institute.

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Department of Human Services (2001). Victorian services for people with disabilities 2000: Disability support services provided under the Commonwealth/State Disability Agreement. Melbourne: Disability Services Branch. Department of Immigration and Multicultural and Indigenous Affairs (2004). Abolition of the ‘White Australia’ policy. Retrieved April 15, 2004 from DIMIA see Department of Immigration and Multicultural and Indigenous Affairs Donoghue, C. (2003). Challenging the authority of the medical definition of disability: An analysis of the resistance to the social constructionist paradigm. Disability & Society, 18, 2, 199–208. Finkelstein, V. (1991). Disability: An administrative challenge? In M. Oliver (Ed.), Social work: Disabled people and disabling environments. (pp.19–39). London: Jessica Kingsley. Frank, R. G. & Elliott, T. R. (2000). Handbook of rehabilitation psychology. Washington, DC: American Psychological Association. Fujiura, G. & Rutkowski-Kmitta, V. (2001). Counting disability. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds), Handbook of disability studies (pp. 69–96). Thousand Oaks, CA: Sage. Gill, C. J. (2001). Divided understandings: The social experience of disability. In G. L. Albrecht, K. D. Seelman & M. Bury (Eds), Handbook of disability studies (pp. 351–72). Thousand Oaks, CA: Sage. Greenspan, S. & Switzky, H. N. (2003). Execution exemption should be based on actual vulnerability, not disability label. Ethics & Behaviour, 13, 1, 19–26. Henderson, R. & Pochin, M. (2001). A right result? Advocacy, justice and empowerment. Bristol: Policy. Holburn, S. & Vietze, P. M. (2002). Person-centered planning: Research, practice, and future directions. Baltimore: Brookes. Lewis, V. (2002). Development and disability. Malden, MA: Blackwell. Llewellyn, A. & Hogan, K. (2000). The use and abuse of models of disability. Disability & Society, 15, 1, 157–65. Mercer, J. (1992). The impact of changing paradigms of disability on mental retardation in the year 2000. In L. Rowitz (Ed.), Mental retardation in the year 2000. New York: Springer-Verlag. Oliver, M. (1990). The politics of disablement. London: Macmillan. Oliver, M. (1996). Understanding disability: From theory to practice. London: Palgrave. Parmenter, T. R. (2001). Intellectual disabilities – Quo vadis? In G. L. Albrecht, K. D. Seelman & M. Bury (Eds), Handbook of disability studies (pp. 267–96). Thousand Oaks, CA: Sage. Sarason, S. & Doris, J. (1979). Educational handicap, public policy and social history: A broadened perspective on mental retardation. New York: Macmillan. Scully, J. L. (2002). A postmodern disorder: Moral encounters with molecular models of disability. In M. Corker & T. Shakespeare (Eds), Disability/postmodernity (pp. 48–61). London: Continuum. Shalock, R. L. (1999). A quest for quality. In J. F. Gardiner & S. Nudler (Eds), Quality performance in human services (pp. 55–80). Baltimore: Paul H. Brookes. Shakespeare, T. & Watson, C. (2002). The social model of disability: An outdated model? Research in Social Science and Disability, 2, 9–28. Stancliffe, R. (2002). Provision of residential services for people with intellectual disability in Australia: An international comparison. Journal of Intellectual & Developmental Disability, 27, 2, 117–24. Stone, D. (1984). The disabled state. Philadelphia: Temple University Press. Straight Ahead Pictures (2004). Disability History Museum. Retrieved February 6, 2004 from UN see United Nations United Nations (1993). Standard rules on the equalization of opportunities for persons with disabilities. New York: UN.

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United Nations (2003a). Disability statistics: Available studies on disability. Retrieved February 3, 2004 from World Health Organisation (2001b). International classification of functioning, disability and health. Geneva: WHO.

2

Lifting the silence Patricia O’Brien, Christopher Newell and Irene McEninery with Avril Thesing

Learning objectives After reading this chapter and completing the activities, you should be able to: • demonstrate increased insight into the situation for many people with a disability • understand the impact that the civil rights movement has had on improving the situation for people with a disability • be aware of the undesirable effect of ‘controlling’ the lives of people with a disability, and the need for professionals to adequately consult and communicate with the people they support • recognise the need for professionals to establish effective partnerships with people with a disability.

Introduction I would go for walks and try to run away and the staff of my villa would have to come after me and take me [back] … I didn’t like the way they treated me. (Virginia’s memories of her 21-year stay in an institutional setting: O’Brien, Thesing & Capie, 1999, p. 110.) Somebody might knock him around or knock him out for being smart. (A mother’s memories of her son’s 10-year stay in an institutionalised setting: O’Brien et al., 1999, p. 131.) [Simon] doesn’t like talking about why he was there and what happened when he was there. He prefers to make up another story, or

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[tell about] something that didn’t really happen … he used to get a lot of shock treatment … It happened every time he did something wrong that he would go to a room where he got shock treatments. (A key worker’s reflection on Simon’s reaction to being institutionalised for over twenty years: O’Brien et al., 1999, p. 94.)

These quotations from a series of case studies of institutionalisation by O’Brien and colleagues invite the question: Why were these people not heard throughout what is now recognised as an era that marginalised and devalued people with disabilities? (Hughes, 1998; Wolfensberger, 1992). This chapter begins by reflecting on the past for people with disabilities and identifying factors that have been instrumental in lifting the veil of silence that suppressed the voice of these citizens. It explains how useful change has come about as a result of: • the rise of the civil rights movement and the recognition of human rights of people with a disability • the exposure of conditions in disability institutions • replacement of the ‘professionalisation’ of disability with the hopes, dreams and aspirations of people with a disability, and • the growth of the disability movement. The challenge of recognising voice for those who support citizens with a disability is addressed throughout the chapter, which concludes with a discussion by Christopher Newell of the right-to-life debate.

Civil rights movements and disability Although there has been much rhetoric over the years about all men being born equal, the voices of minority groups did not begin to emerge until after World War II with the civil rights movement. The voice of black America was promoted by such people as Martin Luther King Jr., Rosa Parks and Robert Kennedy. A watershed was Robert Kennedy’s proposed Civil Rights Bill. In 1963 over a quarter of a million people descended on Washington DC to listen to numerous activists, the most influential being Martin Luther King. King’s voice still resonates today, telling the nation that ‘I have a dream’ – a dream that expressed the hopes of millions of black Americans

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that one day this nation will rise up and live out the true meaning of its creed: We hold these truths to be self evident: that all men are created equal … I have a dream that my four children will one day live in a nation where they will not be judged by the colour of their skin but by the content of their character. (Tywebbin Creations, 2004)

The Civil Rights Bill was passed in 1964, and King’s dream continues to be inspirational for many minority groups forty years later. The role the civil rights movement played in gaining recognition of the rights of people with disabilities is described by Scheerenberger (1987), who in documenting the history of intellectual disability in the US identified not only the civil rights movement as a catalyst for change, but also the Vietnam War experience, declaration of special rights statements, highly active parent and professional groups as well as a receptive public and political system. (p. 126).

Similarly, in Britain, Oliver (1996) believed that the struggle for the full rights of citizenship for people with disabilities can be traced back to the struggle of black people in getting the vote, gaining eligibility for elective office and being tried by peers. At the international level, in 1971 the UN General Assembly adopted a Declaration of General and Special Rights of the Mentally Retarded. This was followed in 1975 by the circulation of the Declaration on the Rights of Disabled Persons (UN, 1975). These declarations emphasised that people with disabilities should have access to opportunities that are available to all citizens; to the inherent right to human dignity, to enjoy a decent life, as full and normal as possible, [and to services that] enable them to develop their capacities and skills to the maximum and hasten the process of their social integration and reintegration (Rayner & Cockram, 1996, p.156).

The work of the UN continued into the International Year for Disabled Citizens in 1981, when the General Assembly adopted a World Programme of Action Concerning Disabled Persons. As part of this action it was agreed that before the end of the decade there should be an International Convention to Eliminate Discrimination against Persons with Disabilities. This led to the development of what is now known as the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities being proclaimed and adopted by the UN General Assembly in 1993 (UN, 1993). The areas

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targeted for equal participation were accessibility, education, employment, income, maintenance and social security, family life and personal integrity, culture, recreation and sports, and religion. Apart from declaring in the Standard Rules that people with disabilities have the same rights and obligations as others, the UN also stipulated that ‘persons with disabilities and their organisations should play an active role as partners in this process’ (p.9). This challenge was taken up by Disabled Peoples’ International (DPI), which is a cross-disability network with over 160 national assembly members. The DPI was a major contributor to the development of the Standard Rules, and the DPI World Council has continued to work with national assemblies to promote a UN Convention on the Rights of Disabled Persons to promote and protect the human rights of all people with a disability. The work of the UN, coupled with the ongoing development of human rights and discrimination legislation in particular countries, has given a voice to many disabled people. In Australia, the Disability Discrimination Act 1992 provides some legal protection against discrimination (see chapter 9 for a discussion of law and disability). In New Zealand, the Human Rights Act 1993 and the Health and Disability Commissioner Act 1994 serve this purpose. The New Zealand Human Rights Act 1993 (as amended in 1994, 1999 and 2001) is premised on the assumption that people need protection from unlawful discrimination on the grounds of sex, marital status, family status, religious or ethical belief, colour, race and ethnic or national origins, disability, age, political opinion, employment status and sexual orientation. Under the Act, a person who has a disability has grounds for complaint if discrimination occurs in the areas of employment, education, housing and accommodation, provision of goods and services, access to public places, vehicles or facilities. Such rights legislation is worth celebrating. However, of the 246 complaints to the New Zealand Complaints Review Tribunal from 1997 to 2001, only ten have been on the grounds of disability (NZ Human Rights Commission, n.d.). (This figure does not include complaints settled through mediation.) The low number of complaints suggests that people with disabilities are reluctant to voice their concerns. Nevertheless, the commitment in New Zealand to the voice of citizens with a disability is exemplified by the work of Robert Martin, a self advocate who spent many years institution-

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alised, and who now serves on the World Council of Inclusion International and was a member of a delegation to the UN to discuss the Convention on the Rights of People with Disabilities (UN, 2004). Robert has stated his advocacy for the convention in these terms: I believe that such a Convention will help many governments in the future to adjust their legislation and laws to have a more inclusive society where people with a disability will be able to fully participate in community life, and where laws will not discriminate against citizens with disabilities.

In Australia, the International Year of Disabled Citizens in 1981 is also recognised as a turning point for people with disabilities, with the passage of anti-discrimination and protective legislation (Rayner & Cockram, 1996). Two years later three important initiatives occurred: • the funding of an Australian chapter of DPI • the setting up of a Disability Advisory Council of Australia that included members with a disability • a review of services that led to the Disability Services Act 1986, which recognises the aspirations of people with a disability. These initiatives were followed by the development of an Australian Disability Strategy based on the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. This lead to the Disability Discrimination Act 1992, which proposed a national process for ensuring equal opportunity for people with a disability. The words of Robert Martin (2003) are relevant if rights legislation and conventions are to be more than just silent documents. As a council member of Inclusion International, he challenges professionals: In my work with self advocacy I have found that human rights can be effective when we can understand our rights. If we don’t we are still at the mercy of the professionals who understand these things. (p. 1)

Robert’s words resonate with the need for a personal commitment by professionals to understand the legislation from the point of view of consumer need. New Zealand has introduced a set of standards against which services are to be audited and registered, and the visibility of consumer rights is paramount in achieving disability service registration (Ministry of Health, 2004). Australian standards are discussed in chapter 9. For people with cognitive impairments, plain

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English and pictorial information statements are becoming increasingly available; however the challenge is deeper than the written word. If rights are to be lived, those who support people with cognitive impairments must be vigilant in ensuring that those people understand rights infringement and the complaints process. Exposing the conditions inside institutions The emphasis placed by the civil rights movement on the need for recognition of the fundamental human rights of all people led to a call for the conditions in long-stay residential institutions to be exposed. Both the international parent movement – groups of parents worldwide developing their own organisations to advocate for their children – and some highly publicised institutional scandals played a part in the subsequent demise of some of these (Mansell & Ericsson, 1996; O’Brien et al., 1999). The work of Burton Blatt in the 1960s was instrumental in graphically showing the degrading conditions inside five US institutions for people with an intellectual disability (Taylor, Blatt & Braddock, 1999). Blatt visited these institutions with his colleague Fred Kaplan, who took photos with a hidden camera. In writing about what they saw, Blatt explained: Our Christmas in Purgatory brought us to the depths of despair. We now have a deep sorrow, one that will not abate until the American people are aware of and do something about the treatment of the severely mentally retarded in our institutions. We have again been caused to realise that ‘Man’s inhumanity to man makes countless thousands mourn’. (Blatt & Kaplan, 1966, p. 7)

Blatt’s pictorial representation of people without bladder control living naked and being provided with no purposeful activities ‘helped to shake the “out of sight, out of mind” blindness of the American public to people put away in places like Willowbrook’ (Herr, 1999, p. xiii). This particular US institution was closed after it was found that children with an intellectual disability living there were used as guinea pigs in a series of medical experiments (Rothman & Rothman, 1984). Likewise, the closure of the Ely Hospital in Cardiff, Wales, followed evidence of neglect and abuse of people with disabilities (Report of the Committee of Inquiry, 1969). Concern about the rights of people with disabilities in institutions extended to Australia and New Zealand. The Oakley Report in

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New Zealand (Gallen, 1983), revealed hospital conditions where basic human rights and dignity were ignored. The role of advocacy in the process was exemplified in Australia with the closure of the Basil Stafford Centre in Brisbane where 122 people with an intellectual disability lived. Evidence was found to support the submission of Queensland Advocacy Incorporated that ‘institutions and institutionalised living in themselves are causal factors in the presence and perpetuation of frequent and sustained forms of abuse and neglect of persons who are devalued and vulnerable’ (Criminal Justice Commission, 1995, p. 398). One outcome of concerns about human rights has been an ongoing process of closing large residential complexes for people with a disability. As institutions closed and people moved to live in the community their voices began to emerge with the recording of their life experiences. Anthologies of stories (Edgerton & Gaston, 1991; Traustadóttir & Johnson, 2000), individual stories (Harrowell, 1997), and stories written in partnership with able-bodied supporters (Cincotta, 1995) helped to compensate for the invisibility of the lives of the many people with a disability who had spent the greater part of their lives out of the view of the rest of the public (Hughes, 1998). These stories often combine good memories with those not so easy to relate. The story that follows (box 2.1) is by a woman whose family placed her in an institution in the hope that her life would continue in much the same way as it had begun, as a much loved and cared-for daughter. What was not known by her family and others who placed their trust in institutional systems was that congregating people together ‘ensures the worst effects of modelling, [and] hours upon hours of each day … waiting for activities’ (Criminal Justice Commission, 1995, p. 368). Irene McEninery’s story is taken from a collection of stories that were told as part of a follow-up study of 54 people who had lived in an institutional setting in New Zealand for an average of 22 years (O’Brien et al., 1999). For the purpose of this chapter, Irene has agreed to highlight that part of her story that concerns her life in the institution. Irene’s story, facilitated by Avril Thesing, exemplifies the spirit of a person who is reconciled to being denied the opportunity to live out the identity she was born to. Her story is one of forgiveness, and may be restorative for those who inflicted pain on her.

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BOX 2.1 • IRENE’S STORY Frequently fiction explores flights of fancy. Time travellers emerge bewildered at their future destination to find the once familiar replaced by a new order, as well as loved ones aged and gone. Such a traveller was Irene McEninery. She was not imprisoned by time, but by the prejudices of the society in which she lived. She lost what were potentially the 20 most productive years of her life in an institution, and was called upon as a middle-aged woman to adjust to the parameters of an outside community which had both forgotten her and had radically changed from the community she once knew. However, Irene was resourceful and equal to the task. Irene begins her story by reflecting on her life before being institutionalised:

It was a happy time when I lived at home with my mother. I had to help Mum with the housework and I used to go to the Catholic Women’s League, and we used to go on the railcar to Wellington, and I used to help Mum in the garden, and I used to cook the lunch for Mum. I used to cook omelette, and bacon and eggs, and I used to call Mum in for lunch while she was at work in the garden in Cornwall Street. Mum never found me awfully hard to manage, she found me quite easy to manage, I was good company for Mum, and I loved Mum very much. The whole family used to go to Church every Sunday and Benediction at night. My father worked in the Wellington Telegraph Office. I have lots of memories of my father. My father used to look after me while Mum went out to nurse sick people. I can remember a lot about my father, he was a good father to me. My father used to stay home a lot and look after me while Mum went out. He was a good father. I was only 16 when my father died. Life was to change radically for Irene after her mother was widowed and her mother’s physical frailty impacted on Irene’s own health.

I wasn‘t well because I was having a nervous breakdown, worrying about Mum not being well … I was having a low [point] in case anything happened to Mum, [fearing] I would be sent to Porirua [an institution for the mentally ill]. Mum didn’t want me to go to Porirua. It was Dr Mason who suggested I go into Kingseat because he said Mum was getting too old and sick and frail to manage me anymore. Mum was unable to cope, and worried [what would happen to me] if she died. I can remember going to Kingseat. I was quite grown up and mature, I was 27, nearly 30 when I went into Kingseat. I was in the block unit. I was upset at leaving Mum, and I was broken-

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hearted, because I missed my Mum very much, and I missed my lovely home in Masterton. I was upset at leaving Mum, I was good company for Mum … and I loved Mum very much. Mum had a little unit in Panmure. She came every week to see me on the bus, and Mum wrote to me every day, and I went home and stayed with my mother for three months, and I went home and stayed with my mother for fourteen days in four weeks. But Mum never found me awfully hard to manage, she found me quite easy to manage. HOSPITAL MEMORIES

Despite her homesickness, Irene had some happy memories of Kingseat, particularly of people. She contrasts this by recalling the dark days as well:

Yes it was the people I enjoyed at Kingseat. Joan and I we used to talk for hours and hours, and hours. She was a friend of mine. It was the people I enjoyed, and I miss them all very very much, because [now] I can‘t talk to them, communicate with them, and have conversations with them. I miss Jean and I miss Nina. I could talk to Nina and I got on well with her. I didn‘t have any grudges against any of them. I could talk to Joan quite a bit, even though she was older. I could try to get on with her and be sensible. But Liddy was a very violent lady, she used to beat people up, she used to break peoples’ doors and pull and tear their hair out. This was because she was a very bad child abuse victim, and her parents didn’t love her. She had a very, very sad sort of home background. She had never been to school, and couldn’t read or write anything. She had been in Porirua since she was a child. I was also terrified of the shock treatment at Kingseat. I looked down on the water out of the window, and I could hear the screams of the people having shock treatment, and I just about cried. I never had shock treatment. Why ever did they have to have shock treatment? When reminiscing about the value of early friendships in the institution Irene looks forward to the annual ball of the agency that she now lives with:

When I go to the ball, I see all my friends that were in Kingseat and I catch up with all of them … I saw a nurse I knew at Raventhorpe and I can remember her as well as anything, and she remembered me after all these years. Irene’s humanity enables her to look back and acknowledge the past in her generous and philosophical way.

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Aligned with the telling of peoples’ stories has been the articulation by people with disabilities of both sexual and physical abuse occurring while they were in residential care. Criminal convictions of carers working in institutions have implicated the management of religious orders and government departments (Bausch, 2002). A 2004 newspaper article in the New Zealand Weekend Herald (Taylor, 2004) verifies Irene’s memory of shock treatment. The article was headed, ‘Patients lived in fear of The Treatment‘. In this case, it was not the voice of the residents but of staff who worked there in the 1960s that was reported. Four former hospital staff members have supported the claims of two hundred patients seeking compensation for shock treatment in four psychiatric hospitals that also housed people with an intellectual disability. The staff decided to speak out following reports that the complainants’ credibility was being questioned. According to one of the women, it was dehumanising to continue working there, you would have to anaesthetise yourself against what was happening. There was no emphasis on anything remedial or any spark of hope introduced into the patients’ lives. (p. A5)

Another ex-staff member said, ‘I’m amazed anyone could have come out of there and live a normal life. It’s a credit to those who did’ (p. A5). The ramifications of the era of institutionalisation will continue to resound through criminal convictions and associated compensation until people are satisfied that they have been heard.

Moving from paternalism to partnership What went on in institutions was also a reflection of a hierarchical management system that has been referred to as the ‘professionalisation’ of disability (O’Brien, 1997; Oliver, 1990). This phenomenon occurs where there is a power differential between those in authority and those receiving a service. Historically, expertise on disability issues emerged from the medical profession, and this has led to the dominance of the medical model of disability discussed in chapter 1 (Fulcher, 1989; O’Brien, 1997). While a wide variety of disciplines now have an interest in disability, power continues to rest with those who manage disability services and those who allocate resources, such as care managers and needs assessors. As long as one group feels superior or inferior

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to another, the voices of citizens with a disability will be muffled. In response to this power imbalance, in a recent New Zealand report entitled To have an ordinary life the National Advisory Committee on Health and Disability explored what people with an intellectual disability saw as the issues that created barriers for them in experiencing the ‘ordinariness’ of daily living (2003). The need for support was raised and placed in the context of the concept of social interpretation. This arose from an analysis of the voices of citizens with a disability recorded nationally in a series of focus groups. Social interpretation was defined as occurring where: family, whanau, friends or support workers assist the adult with an intellectual disability to understand what is happening in their environment, assist them to make the decisions they wish to take, and assist them to exercise their rights. In this way a social interpreter helps a person with an intellectual disability to interpret the world. (p. 21)

In supporting the concept of social interpretation, O’Brien (2003) expresses caution that whatever is being interpreted must be based on the needs of the person with a disability and not those of others who have an interest in how the lives of people with disabilities are managed and resourced. When one reads and hears what are the aspirations, hopes and dreams of people with disabilities, there seems to be a discrepancy between their ordinariness and their difficulty of achievement. Aspirations are often denied through what Abberley (1987) has identified as social, financial, psychological and environmental barriers. Bureaucratic compliance often colludes with a lack of support from staff, family, friends and advocates in making the lives of people with disabilities less than acceptable. The following quotes from To have an ordinary life indicate that what people want is far from complex (NACHD, 2003). Flexible supported living options My brothers and sisters grew up and left home and I want to leave home too, but they said I have to stay at home with Mum. Why can’t I get support to leave home? (p. 23) Communicating My friend in the institution could use 400 signs, but when she moved to another part of the country, her notes got lost so no-one knew and no-one listened to her signing. (p. 31)

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Paying for things I reckon I’m not getting enough. I just think the government is not giving me enough because I have to pay for lots of things like bus tickets, rent, food and telephone, and it’s really hard. (p. 32) Work (paid and unpaid) For about eight and a half years I had a kitchen-hand job. I got half wages and half benefit. I got laid off. When I was working there they brought in an outside company to run all the kitchens, that’s why I got laid off. I now come here [vocational service] five days a week. (p. 33) Being part of the community Putting residents into the van. Driving to the shop. Having them wait in the van while you hop out and buy ice creams. Eating the ice creams in the van. Driving home again is NOT community participation. (p. 35) Learning new things The literacy programme – one hour a week – helps me do the stuff I never did at school. (p. 37) Relationships Friends who work in normal jobs accept me for who I am and what I am – they are important too. (p. 38) Having fun Money stops me doing things – I have to rely on staff coming to pick me up for things at night or I bike. Staff don’t always come at the right time. (p. 39) Moving around I want to learn to walk to the bus and catch the bus by myself and do the money by myself with no-one telling me. (p. 40)

These aspirations, expressed by people with intellectual disability in New Zealand, have been echoed in an international study of older women with disabilities (Walsh & LeRoy, 2004). When specifically asked about their dreams and vision of the future, their responses covered improved health, independence, travel, marriage and intimate relationships, personal stability and a sense of one’s own home, employment and stable living situations. Returning to Irene’s story, her wishes centred on maintaining her new life: About being in the community … I’d like to tell people. In some way I’d like to say that I used to be picked on and not valued by anyone as a person. They didn’t accept the kind of person I was and they would call me names and swear which I didn’t like to hear. That was then,

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but now everybody says I am a darling and a sweetie and everyone loves me and values me as a person and a human being. It is a much more peaceful life and I have found some wonderful friends. (O’Brien et al., 1999, p. 149)

Given that the hopes and aspirations of people with disabilities are no different from other people’s, services need to become ‘ordinary’ by shifting from an ethos of giving service to an ethos of being of service (NACHD, 2003; O’Brien, 2003). To be of service means that the role of the supporter must be defined by the aspirations and needs of those who require support to live their disability. This should occur ‘from the inside out’, not what has previously been imposed ‘from the outside in’. Having a disability does not set people apart in terms of what they hope to achieve in life; the difference can be in how they are supported to achieve their aspirations. If those who provide support accept that the essence of the person with a disability is no different from their own, the ‘them and us’ attitudes of the past should disappear. In an acceptance that ‘we are of each other’ (O’Brien & O’Brien, 1996), support should correlate with problem-solving where the professional, as well as those who offer the type of support that comes naturally between friends and colleagues, work in harmony with the person ‘to be of service’. Facilitating outcomes based on the wants and needs and desires of people with disabilities is more an attitudinal challenge than a resource challenge. Authentic listening to people needs to replace tokenistic listening. Chapter 8 discusses some practical ways to achieve these outcomes. Listening to the collective voice of citizens with a disability Recognition by citizens with a disability that disability is constructed and perpetuated by societal barriers (Abberley, 1987; Oliver, 1990, 1996) has led to the development of the disability movement, which is premised on the belief that organisations should be of people with disabilities rather than for people with disabilities. An aim of the movement is to give political impact to the voice of citizens with a disability. Priestley (1999) sums up the work of the disability movement: Disabled people’s organisations in Britain have made many advances: the birth of integrated living projects; the acceptance of a ‘needs-led’ agenda for community care; the partial implementation of direct

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payments and anti-discriminatory legislation; the incorporation of social model thinking in the mainstream of European Union and United Nations policy making. These are no small achievements and they have all been contingent upon the effective self-organisation of people with disabilities locally, nationally and globally. (p. 223)

In New Zealand, the disability movement is evident in the work of the Disabled Persons Assembly, which has been instrumental in the development of the New Zealand Disability Strategy introduced in 2001 (Ministry of Health, 2001). The strategy is premised on social theory (Oliver, 1990, 1996), and it has become a platform for action and advocacy by people with disabilities and their advocacy organisations. Its objectives cover the provision of education, rights, employment and community participation. An encouraging indication that the disability movement is having an impact on government policy in New Zealand is the government’s commitment to fostering leadership by people with a disability. Actions include establishing a register of people with disabilities for government appointments, and a leadership development and mentoring program. Emphasis is also placed on people with disabilities taking part in decision-making, both as service users and as staff. In Auckland, this has taken the form of a Disability Empowerment Advocacy and Support partnership between support organisations and the Ministry of Health’s Disability Service Directorate. Organisations representing the interests of people with a disability, their families, and Maori and Pacific Nations people have been contracted to work in partnership with the ministry in responding to advocacy, support and relaying of information (Ministry of Health, 2004; Ripple Trust, 2003). The partnership challenges the concept that effective advocacy requires independence from funding agencies to avoid a conflict of interest (Wolfensberger, 1971). The disability movement provides a challenge for all able-bodied support staff and the management of community-based services in determining their relationship with people with a disability. Barnes, Oliver and Barton (2002) favour what they have defined as an ‘outsidein’ approach, where people with disabilities develop relationships with able-bodied groups as allies – that is, as supporters and collaborators. Being an ally, giving full recognition to the identity of the person as a member of a political group while at the same time providing a service (the context of which could be under scrutiny by the move-

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ment), moves the relationship between support worker and service user to a new level, demanding an acceptance by support workers of the politics of disability. Increasingly, support workers will be challenged to accept the need for people with disabilities to be political in joining together in advocating for their own rights, both individually and as a group. Where able-bodied support becomes part of this process, it needs to be on terms acceptable to people with the lived experience of disability. It is notable that people with an intellectual disability have been less prominent in their membership of the disability movement than people with physical and sensory disabilities, and those who are young (Barnes et al., 2002). This could be connected to the fact that people with an intellectual disability often depend on staff to organise the support required for them to attend meetings and activities. If the ‘ally’ relationship has not been negotiated between service users and staff, support for advocacy activities can become secondary to the daily running of services. Being an ally to the disability movement means supporting the voice of groups like Central England People First (2005), whose members know what it is like not to have much power in our lives, to be treated differently from other people because we have learning difficulties, to have other people making decisions for us. We are here to speak up for all people with learning difficulties.

The premise that all members of society are only temporarily ablebodied (Lee, 2002) should mobilise not only support workers, but the community at large, to join the fight ‘to make sure that people with learning difficulties are involved at all stages in the planning and development of the services they receive’.

Life or lifeless So far this chapter has considered the question of why the voice of citizens with a disability has been silent in the past, and emphasised that the emergence of that voice requires those who offer support to act as allies in the pursuit of equity. Listening implies that people with disabilities have a voice; or to put it more bluntly, a life. Who better to express the issues surrounding the right-to-life debate than Christopher Newell, whose lived experience of disability has encountered the arguments for and against life for people with a disability?

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Much of my life has been devoted to the naming and exploration of bioethical issues for people with disabilities and their relationship with the everyday lives of those in society who identify as having disability. This is primarily because I am someone who was early in life subject to medical dominance (Willis, 1983), including ‘learned pronouncements’ as to whether or not I would live, and indeed whether or not I should live. Later I requested, and was refused, euthanasia when life just seemed all too difficult. In light of such personal experience and the pressing conviction that ‘someone should do something’, I then moved to teaching and researching in the area of bioethics (bios meaning life). The issues bioethics explores include the nature of medical treatment, and other decisions at the beginning and the end of the life cycle, including matters vital for whether or not people with disabilities may live. Hence, I come to bioethical debates with both a personal and professional perspective. Predominantly the lives of people with a disability are narrated for us via the latest media hype about the tragedy of disability, and the latest technology that will deliver us from that enduring catastrophe. To a significant extent whether or not the loss associated with an onset of impairment continues to overwhelm us depends on social norms. I remember well wanting all sorts of cures – and others still do for me. We have a belief in the ‘magic bullet’ or miraculous cure, such as the suggestion that the cochlear implant, gene therapy or indeed euthanasia will somehow ‘deal’ with disability. Yet the fix for disability does not just lie in medical science; it lies in a social embrace that properly uses such science to embrace life, helping us to find a balance that is not just about a perpetual quest for a non-disabled norm. Disability as rejected knowledge People with a disability see the active rejection of their own knowledge in bioethical debates. It was dissatisfaction with the use of biomedical knowledge and its account of disability that led to the first national response by people with disabilities to a discussion paper of the Australian National Health and Medical Research Council (NHMRC) (1988) entitled The ethics of limiting life-sustaining treatment. In that paper the NHMRC used disease labels such as spina bifida in suggesting non-treatment of some people. In response,

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Disabled People’s International (Australia) used the voices of people with a disability to refute this knowledge. In particular we used the work of Alison Davis, a person with spina bifida, who argued: If I lived in a society where being in a wheelchair was no more remarkable than wearing glasses and if the community was completely accepting and accessible, my disability would be an inconvenience and not much more than that. It is society which handicaps me, far more seriously and completely than the fact that I have spina bifida. (Davis, 1989, p. 19)

In a beautifully titled response to the work of well-known utilitarian authors Peter Singer and Helga Kuhse (1985), Should the baby live? The problem of handicapped infants, Davis wrote a review article called ‘Yes, the baby should live’ (Davis, 1985). For many years, those of us with a disability have been drawing upon our life experience, and the ever-expanding critical disability studies literature, to point to the social nature of disability, and the fact that we are more than biological deficits requiring screening, abortion and genetic manipulation. As Fulcher (1989) notes, it is medical and charitable discourse that narrates dominant conceptions of reality for people with a disability. For all the written work and the media interviews I have participated in, as I look back over the efforts of both the Australian and the international disability rights movements, recent bioethical debates make it quite clear that ‘better dead than disabled’ and ‘thank god I don’t have a disability’ are still the predominant attitudes in today’s society. If you are in any doubt about this, consider the 2002 stem cell debate in Australia where politicians wept as they informed us of the condition of their constituents with a disability (Goggin & Newell, 2004a). We were told that embryonic stem cells would provide the solution. The iconic image of Christopher Reeve as the ‘catastrophe of disability’ swept across our TV screens, and he flew (for an exorbitant speaking fee) in a specially modified 747 to inform us of how horrible disability is, and of the technical solution. After the stem cell legislation was secured, the politicians who had been weeping for their constituents firmly believed that disability had been dealt with, as they went back to a discourse of welfare reform, and the important task of casting people with ‘bad backs’ off pensions. Nowhere was the social nature of disability attended to, or the breadth of the problem. Indeed, when a few of us sought to turn

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attention to this we saw a very carefully orchestrated media strategy that reinforced the tragedy of disability. Perhaps the most notable example came from the NSW Premier, Bob Carr. After the appearance of the one newspaper article in the whole debate by a person with a disability, and a reference from the NSW Commissioner for Community Services to ‘Dickensian institutions’ in NSW and powerful vested interests, Carr quickly organised a media opportunity outside a spinal cord unit, later writing: A 19-year-old woman lies paralysed from the neck down as a result of a car smash. I leave the spinal unit after meeting her, my mind racing. How many years before there is a cure? Before she can walk out of hospital? (Carr, 2002, p. 11)

As ever we were talked about rather than invited to speak for ourselves. The recent Australian euthanasia debate also significantly illustrates a rejection by euthanasia advocates of the knowledge of people with disabilities. When we review many of the arguments and circumstances identified by those advocating for active medical killing (euthanasia), we start to realise that many people with disabilities fit their eligibility criteria for euthanasia. For example, the Rights of the Terminally Ill Act 1995 in the Northern Territory (subsequently overturned by the Andrew’s Bill in the Commonwealth parliament, making it illegal for Australian territories to legalise medical killing), captures many people with disabling conditions in the category of being allowed to die. The narrative of Bob Dent (1996), the first person to successfully use that legislation, focuses on his significant experience of pain (without adequate pain relief), and the fact that he was incontinent. These are the daily experiences of many people who live with a disability (for further discussion, see Parsons & Newell, 1996; Newell, 1996). In a moving commentary, John Hockenberry writes of his experience and how he was taught by strangers: My mind told me that there would be no way to survive the humiliation of my body’s very public loss of control. The reality is quite different. My tragedy was simply one of the household chores that day at Yehuda’s House on the West Bank. I presumed that I would need a brain transplant; Yehuda proved that all I needed was some towels and a mop. (Hockenberry, 1996, p. 257)

As someone who at one time requested death, I will always be grateful to health professionals who responded to that request with an

Lifting the silence 45

invitation for me to name the fears and problems I was experiencing, rather than seeing it as an understandable expression of autonomy in deeply difficult circumstances. In the Tasmanian Euthanasia Inquiry the president of Tasmanians with Disabilities, an umbrella organisation of people with disabilities, wrote as follows: The situation for many people with disability in Tasmania is desperate and we urge this Committee to make urgent recommendations to address the travesty of human rights and human dignity found in the situation of people with disability in Tasmania. It is ridiculous for people to see ours as a social problem separate from euthanasia, since the appalling situation we face must significantly influence the decisions of people who live with, and acquire, disability. We effectively have few rights, and little support for our lives to be properly fulfilling. In such a situation death becomes an inevitable request as opposed to a free decision. (Tasmanians with Disabilities, 1997, p. 4)

Yet many of the reasons why people with disabilities would request euthanasia were not attended to by that or any other inquiry. In these, and so many other debates, disability becomes the moral trump card that removes our very claim to being full and valuable people – we are the ultimate form of indignity (Newell, 1998). Disability as catastrophe The spectre of the ‘catastrophe’ of disability also justifies an account of genetics that readily identifies good genes and bad genes, yet resists this as being a form of eugenics (Newell, 1999). It provides justification for embryonic stem cell research, cloning and anything else. Indeed, as Goggin and Newell (2004b) have suggested, there is almost a formula which operates as follows: 1

The tragic life of a person, or several devalued people, is portrayed in a way designed to elicit maximum affect and pathos.

2

A technology is portrayed as delivering a person from disability, provided that society embraces, funds or legitimates such a technology.

3

Securing the technology means that disability has been ‘dealt with’; after deploying such rhetoric there is to be no more appeal to emotion, and the solution lies in the rational pursuit of the technology identified in step 2 (effectively there is only one, inexorable logical step).

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Disability, as a political issue, goes away until next time it is needed in the powerful politics of media representation.

In Australia, the appropriation of the voice of Christopher Reeve, who narrated the catastrophe of disability, shows that the problem is not just that voices may not be heard or be silenced, but that accounts of disability may well be amplified. Predominantly, biomedical and charitable approaches dominate. Is it any wonder that in 2000, Disabled People’s International Europe, in the first international conference of People with Disabilities about bioethics, declared ‘Nothing about us without us’? In addition, part of their declaration stated, ‘We demand that we are included in all debates and policy-making regarding bioethical issues’ (DPI Europe, 2000; see also Newell, 2000). Yet perhaps in these and many other debates with regard to the beginning and ending of life, we also encounter significant problems of who may speak, and how. If I ever think that I may have achieved some degree of professional standing, that thought usually diminishes rapidly when I realise that so often it is the non-disabled who allow us to speak and frame our voices in appropriate ways. Rarely are books about disability written by people with disabilities. Even in well-intentioned collections, the very framing of the disembodied voices of those of us with a disability helps to reinforce disability as the exotic other, outside the nice, normal and natural moral community – the us. Many years ago as a teenager, I was learning about the experience of being other, first as someone struggling for his very life in institutional settings where I was not expected to live, and then as someone who had the life-changing experience of packaging refresher towels for Kentucky Fried Chicken in a sheltered workshop. In both cases people with disabilities were the other, to be acted upon in powerful ways. I long for a day when the voices of myself and many other people with disabilities will disrupt the dominant images of disability that remorselessly play out in the media, education, science, technology and all our other social institutions. I long for a day when those voices will transform disability from the profoundly disturbing and distasteful other to part of a diverse society that embraces disability as us from zygote to grave. This is a deeply disturbing suggestion; one that requires far more than installing wheelchair ramps while

Lifting the silence 47

retaining our fundamental notions about disability as other, unnatural, and as dangerous. It requires a rethinking of what it is to be human, and whether people with disabilities really are fully human. If people with disabilities really are human, how will we value, respond to and sustain their voices and ultimately their lives?

Conclusion This chapter has placed the experience of people with a disability in the context of recent social movements such as civil rights and discrimination legislation. These movements have been fuelled by past and present examples of abuse and inequity that people with a disability have been exposed to, as well as the difficulty that many people with a disability have in speaking for themselves. The chapter has raised issues associated with lifting the silence that surrounds the voice of people with disability. It is only through breaking that barrier that people with disabilities may be able to achieve their full potential.

Learning activities 1

Identify advocacy organisations for people with a disability and determine the nature of the advice and assistance they provide.

2

Investigate the extent to which institutions have been closed in your country, and what have been the driving forces for their closure.

3

Do you think that what Blatt discovered in institutions for people with a disability (see page 32) has any relevance for current conditions in disability services?

4

Select a story of a person with a disability and summarise their ‘voice’ and what it means for your chosen role. How does the achievement of your hopes, dreams and aspirations compare to that of disabled people?

5

Describe what being of service means as opposed to giving service. For example, a disability service worker who is of service may be genuinely interested in the concerns and wishes of the people with a disability they support.

6

Where do you stand on the right-to-life argument in relation to disability? Consider right-to-life across the life-span (for example, an embryo with a genetic disorder; an older adult with a

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disability who has a terminal illness). Consider how personal interests (for example as a medical professional, a person with a disability, a politician) may influence opinion.

References Abberley, P. (1987). The concept of oppression and the development of a social theory of disability. Disability, Handicap & Society, 2, 5–19. Barnes, C., Oliver, M. & Barton, L. (2002). Disability, the academy and the inclusive society. In C. Barnes, M. Oliver & L. Barton (Eds). Disability studies today (pp. 250–60). Cambridge: Polity Press. Bausch, W. J. (2002). Breaking trust: A priest looks at the scandal of sexual abuse. Mystic, CT: Twenty-third Publications. Blatt, B. & Kaplan, I. (1966). Christmas in purgatory. Boston: Allyn & Bacon. Bury, M. (1997). Health and illness in a changing society. London: Routledge. Bury, M. (2000). A comment on the ICIDH2. Disability & Society, 15 , 7, 1073–7. Carr, B. (2002). No time to waste in the search for embryonic stem cells secrets, Sydney Morning Herald, 4 April, p. 11. Central England People First (2005) Aims. Retrieved 19 January, 2005 from . Cincotta, K. (1995). Doug’s story: The struggle for a fair go. Melbourne: School of Studies in Disability, Deakin University. Criminal Justice Commission (1995). Report on an inquiry conducted by the Honourable D.G. Stewart into allegations of official misconduct at the Basil Stafford Centre. Brisbane: CJC. Davis, A. (1985). Yes, the baby should live. New Scientist, 31 October, p. 54. Davis, A. (1989). From where I sit. London: Triangle. Dent, B. (1996). Why I wanted to die: Bob Dent’s last words. The Courier Mail, September 27, pp. 1, 6. Disabled Peoples’ International (2004). Retrieved July 15, 2004 from . Disabled Peoples’ International Europe (2000). The right to live and be different. Retrieved 13 February, 2004 from . Disability Discrimination Act (1992). Retrieved October 18, 2004 from . Disability Services Act 1986. Retrieved July 20, 2004 from . DPI see Disabled Peoples’ International Edgerton, R. B. & Gaston, M. A. (Eds) (1991). I’ve seen it all: Lives of older persons with mental retardation in the community. Baltimore: Paul H. Brookes. Fulcher, G. (1989). Disabling policies? A comparative approach to education policy and disability. London: The Falmer Press. Gallen, R. (1983). The report of the committee of inquiry into procedures at Oakley Hospital: Related matter. Wellington, NZ: Government Printer. Goggin, G. & Newell, C. (2004a). Uniting the nation? Disability, stem cells, and the Australian media. Disability & Society, 19, 1, pp. 47–60. Goggin, G. & Newell, C. (2004b) Disability in Australia: Exposing a social apartheid. Sydney: UNSW Press. Harrowell, J. (1997). On being a witness to social oppression. In P. O’Brien & R. Murray (Eds) Human services: Towards partnership and support (pp. 38–46). Palmerston North, NZ: Dunmore Press. Health & Disability Commissioner Act (1994). Retrieved July 20, 2004 from .

Lifting the silence 49 Hockenberry, J. (1996). Declarations of independence: War zones and wheelchairs. London: Penguin. Herr, S. S. (1999). Foreword: The power of dreams and words. In S. J. Taylor, S. D. Blatt & D. L. Braddock (Eds), In search of the promised land (p. xiii). Washington, DC: AAMR. Hughes, G. (1998). A suitable case for treatment? Constructions of disability. In E. Saraga (Ed.) Embodying the social: Constructions of difference (pp. 43–90). London: Routledge. Human Rights Act, 1993. Retrieved July 20, 2004 from . Human Rights Commission (n.d.). CRT/EOT decisions listed according to topic. Retrieved August 12, 2003 from . Lee, P. (2002). Shooting for the moon: Politics and disability at the beginning of the twenty-first century. In C. Barnes, M. Oliver & L. Barton (Eds), Disability studies today (pp. 139–61). Cambridge: Polity Press. Mansell, J. & Ericsson, K. (1996). Conclusion: Integrating diverse experience. In J. Mansell & K. Ericsson, Deinstitutionalization and community living: Intellectual disability services in Britain, Scandinavia and the USA (pp. 241–53). London: Chapman & Hall. Martin, R. (2003). Inclusion: A society for all. Retrieved January 1, 2005 from . Ministry of Health (2004). Disability service directorate. Retrieved July 14, 2004 from . Ministry of Health (2001). The health and disability sector standards: Te Awarua o te Hauora: NZS8134:2001. Wellington: Standards New Zealand. NACHD see National Advisory Committee on Health and Disability National Advisory Committee on Health and Disability (2003). To have an ‘ordinary’ life: Kia whai oranga ‘noa’. A report to the Minister of Health and the Minister for Disability Issues. Wellington: NACHD. Newell, C. (1996) Medical killing and people with disability: A critique. Australian Disability Review, 2, 28–37. Newell, C. (1998). Reflecting on human dignity. St. Mark’s Review, 173, 19–23. Newell, C. (1999) Critical reflections on disability, difference and genetic testing. In G. O’Sullivan, E. Sharman & S. Short (Eds), Goodbye normal gene (pp. 58–71). Sydney: Pluto Press. Newell, C. (2000). The right to live and be different: An exploration of the significance of the DPI Europe Declaration on bioethics and human rights. Interaction, 13, 3, 6–9. NHMRC (1988). The ethics of limiting life-sustaining treatment. Canberra: NHMRC. O’Brien, P. (1997). Human services: Creating or alleviating disability? In P. O’Brien & R. Murray (Eds), Human services: Towards partnership and support (pp. 64–81). Palmerston North, NZ: Dunmore Press. O’Brien, P. (2003). On being of service. Keynote address at the Disability Support Worker Conference, Melbourne, December 2003. O’Brien, J. & O’Brien, C. L. (1996). Members of each other: Building community in company with people with developmental disabilities. Toronto: Inclusion Press. O’Brien, P., Thesing, A. & Capie, A. (1999). Living in the community for people with intellectual disabilities who moved from long stay institutional care to live in the community. Auckland: Auckland College of Education. Oliver, M. (1990). The politics of disablement: A sociological approach. New York: Macmillan. Oliver, M. (1996). Understanding disability: From theory to practice. London: Macmillan. Oxley, G. W. (1974). Poor relief in England and Wales 1601–1834. Newton Abbot, Devon: David & Charles. Parsons, I. & Newell, C. (1996). Managing mortality: Euthanasia on trial. Geelong, Vic.: Villamanta Publishing. Priestley, M. (1999). Disability politics and community care. London: Jessica Kingsley.

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Rayner, M. & Cockram, J. (1996). The response of the law to intellectual disability in Western Australia 1829–1989. In E. Cocks, C. Fox, M. Brogan & M. Lee (Eds), Under blue skies: The social construction of intellectual disability in Western Australia (pp.137–65). Perth: Centre for Disability Research & Development, Faculty of Health & Human Sciences, Edith Cowan University. Report of the committee of inquiry into allegations of ill-treatment and other irregularities at the Ely Hospital Cardiff (Cmnd 3975) (1969). London: Her Majesty’s Stationery Office. Rights of the Terminally Ill Act (1995). Retrieved March 3, 2001 from Ripple Trust (2003). Retrieved August 14, 2003 from Rothman, D. J. & Rothman, S. M. (1984). The Willowbrook wars. New York: Harper & Row. Scheerenberger, R. C. (1987). A history of mental retardation: A quarter century of promise. Baltimore: Paul H. Brookes. Singer, P. & Kuhse, H. (1985) Should the baby live? The problem of handicapped infants. Oxford: OUP. Tasmanians with disabilities (1997). Unpublished submission No. 381 to the Tasmanian Parliamentary Inquiry into the need for legislation on voluntary euthanasia in Tasmania. Retrieved 6 June 2005 from . Taylor, P. (2004). Patients lived in fear of ‘The Treatment’. The Weekend Herald, July 10–11, p. A5. Taylor, S. J., Blatt, S. D. & Braddock, D. L. (Eds) (1999). In search of the promised land. Washington, DC: AAMR. Traustadóttir, R. & Johnson, K. (Eds) (2000). Women with intellectual disabilities finding a place in the world. London: Jessica Kingsley. Tywebbin Creations (2004). Black history–Martin Luther King, Jr. Retrieved October 18, 2004 from UN see United Nations United Nations (1971). Declaration on the rights of mentally retarded persons. GA Res 2856 (XXVI), 20 December. New York: UN. United Nations (1975) Declaration on the rights of disabled persons. GA Res 3447 (XXX), 9 December. New York: UN. United Nations (1993) Standard rules on the equalisation of opportunities for persons with disabilities. GA Res 48/96, 20 December 1993. New York: UN. United Nations (2004). Working group on a convention on the rights of persons with disabilities. Retrieved October 18, 2004 from . Walsh, P. N. & LeRoy, B. (2004). Women with disabilities aging well: A global view. Baltimore: Paul H. Brookes. Willis, E. (1983) Medical dominance. Sydney: George Allen & Unwin. Wolfensberger, W. (1971). Towards citzen advocacy for the handicapped, impaired and disadvantaged. Nebraska: Nebraska Psychiatric Institute. Wolfensberger, W. (1992). A brief introduction to social role valorization as a high order concept for structuring human services. (Revised edn). Syracuse, NY.: Training Institute for Human Service Planning, Leadership & Change Agentry, Syracuse University.

3

Belief systems and disability services Ian Dempsey

Learning objectives After reading this chapter and completing the activities you should be able to: • understand the relationship between principles, legislation and policy, and practice in disability services • demonstrate an awareness of the important beliefs and principles that influence how we support people with a disability • recognise that these beliefs and principles are subject to change as a consequence of community and professional attitudes, of the voice of people with a disability, and of the effectiveness of our systems of support • understand that it is through a combination of appropriate attitudes and beliefs by support staff and the use of evidence-based practices that we may make a positive difference in the lives of people with a disability and their families.

Introduction It is understandable that when we train to work in a profession, such as the disability industry, we may want to focus on what we need to do on a day-to-day basis in the workplace. For example, it’s understandable that we may want information on how to write a support plan or how to respond to some challenging behaviour. This level of

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specific information is certainly relevant, and is essential to doing our job competently. However, there are several reasons why we also need an understanding of the reasons why we might work in a particular way. A first reason for understanding these principles is that no amount of training will prepare us for all the situations we may encounter in the workplace. The characteristics and needs of the people we support will vary across a wide continuum, and it is impossible to predict exactly what may be required in all situations. In other words, our role as support professionals for people with a disability is not like that of a technician. We don’t have a script to follow in our work. We need to evaluate the demands of each situation we encounter, and the needs of each of the people we work with, to determine the most appropriate response at any time. A second reason for understanding the principles that underpin our work is that our behaviour in the workplace is a reflection of our beliefs, our obligation to follow the law, and the requirements associated with the organisations we work for. In the situation of a disability service, our behaviour is influenced by: • personal beliefs (for example, what we think about people with a disability and their place in their communities) • principles we believe we should follow in completing our work (for example, using ‘people first’ language and giving opportunities for choice) • legislation (for example, anti-discrimination laws and funding requirements) • organisational policy (for example, the need to be accountable to the general manager). An awareness of the relationships between these beliefs, principles, laws, policies and practices can assist us in understanding how our behaviour, and the behaviour of others, comes about. An understanding of this is important in the context of this book. One of the main aims of this book is to provide practical advice about how to effectively support people with a disability in the community. How we support such people (the practice), will be influenced by our attitudes and beliefs (the principles), and by laws and organisational guidelines (the legislation and policies). In turn, how well we do at

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the practice will influence future changes in the principles, legislation and policies. The relationship between these variables is shown in figure 3.1. FIGURE 3.1 THE RELATIONSHIP BETWEEN PRINCIPLES, LEGISLATION AND POLICIES, AND PRACTICE (Dempsey, 2005, p. 36)

Principles

Legislation and policies

Practice

Principles of disability service provision There is a range of beliefs underpinning the way we provide support to people with a disability in the community. In many cases, these beliefs have developed through discussion about the need to change, at times, undesirable situations. For example, the well known principle of ‘least restrictive environment’, which argues that you are not justified in placing someone in a restrictive setting (such as an institution) unless there is a very good reason to do so, came about through concern for the potential for abuse and lack of community experiences that such settings provide. The following discussion is not exhaustive. However, it does address the main principles that have influenced disability services in recent times. You should be aware that our beliefs and principles are subject to change. For example, reflect on the way in which understanding of and community attitudes towards mental illness have improved in the past decade. Similarly, the principles considered here are subject to change and refinement as our communities’ understanding and perception of disability evolves. Human rights and social justice For the past sixty years, the UN has taken a leadership role in advancing disability as a human rights issue (Quinn et al., 2002). In that time the UN has introduced a wide range of initiatives to raise the profile, and to improve the status and quality of life, of people with a disability. Important examples of these initiatives include:

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• Declaration on the Rights of Mentally Retarded Persons (1971) • Declaration on the Rights of Disabled Persons (1975) • Standard Rules on the Equalisation of Opportunities for Persons with Disabilities (1993) (Quinn et al., 2002). These rules reinforce equal rights for people with a disability, as well as promoting the inclusion of disability issues in ‘all relevant policy making and national planning’ (rule 14) • work on the development of a Convention on the Human Rights of Persons with Disabilities. At the time of writing, member states of the UN are providing input into a draft convention that seeks to: –

update previous declarations

–

protect the human rights of people with disabilities

–

positively influence the domestic policies of member states by creating an external reference point to which all should aspire (Byrnes, 2004).

During this time, there have been major changes in the way both western and third world countries view disability (Databases, 2003). The most dramatic shift in our thinking about disability has occurred in the last two decades, with a move away from an approach motivated by charity to an approach based on rights. Table 3.1 summarises the key differences between these two approaches to disability. TABLE 3.1 INDICATORS OF CHARITY AND RIGHTS APPROACHES TO DISABILITY Rights-based approach

Charity-based approach

People with a disability: • are subjects • have inherent rights • are first and foremost people • may experience problems due to the manner in which their societies respond to difference

People with a disability: • are objects • do not qualify for some rights • are deficient • experience problems because of their shortcomings

As Quinn and his colleagues argue,

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the disability rights debate is not so much about the enjoyment of specific rights as it is about ensuring the equal effective enjoyment of all human rights, without discrimination, by people with disabilities. ((2002, p. 1)

People with a disability themselves have also been involved in the promotion of human rights issues through a variety of disability rights and disability activist groups (DPI, 2004; Powers et al., 2002). Mirroring these initiatives at the international level is a wide range of measures undertaken by Australia and other countries that address social justice issues for people with a disability. The term ‘social justice’ is widely used, but difficult to define. Most commentators agree that it relates to the redressing of past injustices to disadvantaged groups. For example, widespread support for social justice for Aboriginal and Torres Strait Islander peoples is fuelled by recognition of their displacement from their land, the separation of some Aboriginal people from their families and, until the late 1960s, the lack of full citizenship. For people with a disability, support for social justice is fuelled by issues that include: • until recently, the widespread use of residential institutions • physical, sexual and emotional abuse • very high unemployment rates • overt and covert discrimination across a range of life experiences (Schriner & Scotch, 2001). Human rights and social justice approaches have been very helpful in bringing about a recognition of the disadvantage that people with a disability have experienced. However, we need to be careful about allowing these approaches to lead us to portray people with disabilities as an oppressed minority in modern western societies. Such a view may lead to a paternalistic view of disability (that is, the charitybased approach summarised in table 3.1). Batavia (2001) argues that while he and other people with a disability may continue to experience discrimination and disadvantage, they cannot be accurately described as an oppressed minority in the way that Jewish people during the Holocaust might be described. Some commentators are also critical of the purpose and usefulness of the term ‘social justice’. For example, Windschuttle argues that:

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It [social justice] is a term that few would dare criticise publicly. This is because of the clever conjunction of its terms. If you are in favour of justice – and who is not? – you will find it almost impossible not to be in favour of social justice, at least in principle. And because the concept can be tied to almost any policy at all, social justice is almost as valuable a term for the left as political correctness has been for the right. Everyone approves it, no one dares condemn it. ((2004, p. 19)

The Commonwealth Disability Discrimination Act 1992 and state and territory government policies for people with a disability are examples of strategies to address social justice issues in relation to people with a disability. The ways in which Australia and other western countries have addressed social justice issues is discussed in more detail in chapter 9. Quality of life and lifestyle Throughout the 1970s and 1980s, the theory of normalisation had a significant impact on disability services (Thomas & Woods, 2003). The theory still has influence, but it has been supplemented by a broader understanding of appropriate support for people with disabilities. The concept of normalisation was first developed in Scandinavia (Nirje, 1985), and was later adopted by many other western countries. In its original form, normalisation means creating patterns of life for people with a disability that are essentially the same as for others in the community. For example, since most people in the community live in homes rather than institutions, it is argued that people with a disability should do so. So one outcome of the implementation of normalisation has been the closure of many residential institutions for people with a disability, and the creation of a range of community-based accommodations instead. A rule of thumb in checking to see if the theory of normalisation is being followed is to put yourself in the place of the person with a disability and ask whether you would accept their current situation. If the answer is ‘no’, the principle is not being followed. In the early 1980s, the theory of normalisation was refined by Wolfensberger (1983). He argued that the main reason why people with a disability are stigmatised in society is that they rarely play valued social roles in their communities – as, for example, an employee, a partner, a mother or a sportsperson. Wolfensberger introduced the term social role valorisation to explain this concept, and he suggested that the job of professionals was to use appropri-

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ate methods to teach culturally valued skills to enable people with a disability to fill these roles. There is no question that both normalisation and social role valorisation have made an enormous contribution. However, both approaches have their limitations. Clare and Cox discuss one difficulty with normalisation: it implies some kind of judgement about what is ‘normal’ or ‘ordinary’. This value judgement has tended to be imposed by professionals, often without sufficient consideration of individual preferences or cultural factors. (2003, p. 940)

A more recent principle, enhancing quality of life, captures much of what normalisation attempts to achieve and extends the normalisation theory further. Defining ‘quality of life’ remains difficult because the implications of the term vary between cultures, disciplines, and the purposes for which it is used. Shalock and Alonso state that in the context of disability, health care, and rehabilitation politics, the meaning of quality of life can be seen as enhancing or improving equality for all people, despite their condition. Quality of life in the context of individual preferences produces perhaps the most popular meaning of the concept, namely individually varying experiences of one’s life. (2002, p. 12)

Despite uncertainty about the definition of ‘quality of life’, however, there is general agreement that the concept covers a wide range of life areas or domains. For example, there is agreement that quality of life must be considered in terms of: • physical and psychological wellbeing • friendships and social and community relationships • personal fulfilment • the ability to access rights. The usefulness of the principle for professionals is that it can be a means for designing the delivery of support and for checking to see how effective that support has been for a person with a disability. A range of subjective and objective measures of quality of life can be made (see, for example, Rapley, 2003; Shalock & Alonso, 2002). Determining the perspective of the person with a disability is

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essential when considering their quality of life. Hearing and acting on the person’s voice can be achieved through: • individual and group discussions • careful observation of activities and behaviours • discussion with significant others. In some cases, the use of assistive and augmentative communication with the person may help. Examples of these forms of communication are: • communication boards with pictures or icons that may be pointed to • voice synthesisers that produce speech with the use of a keyboard. These forms of communication are discussed in the section on selfdetermination on page 59, and in chapters 6 and 7. Schwartz and Rabinovitz (2003) demonstrated how life satisfaction, an important component of quality of life, could be determined for 93 adults with mild and moderate intellectual disability. They were interviewed by several social workers (who were independent of the services supporting them) about their satisfaction with a range of aspects of their lives. The social workers used pictures and drawings to help the people they were interviewing understand their questions. The researchers found that there was a close association between the ratings of life satisfaction given by the respondents and the ratings given by the staff who supported them. However, they also found that staff tended to give higher ratings of life satisfaction for those they supported than the respondents themselves. This study shows the importance of involving people with a disability, as much as possible, in issues that affect them. Person-centred approaches Person-centred approaches to support were discussed briefly in chapter 1. The principle goes much further than providing an individualised plan for people with a disability. Mansell and Beadle-Brown (2004) argue that the basis of the person-centered approach is threefold: • It reflects the aspirations of the service user, rather than just addressing their deficiencies. • It attempts to make use of the person’s natural support networks (such as their families and friends), as well as formal supports (such as disability and health services offered by community organisations).

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• It emphasises providing the support required to achieve the person’s goals, rather than limiting goals to what the disability service already provides. Taken together, these points suggest that a significant change may be required in the way some service providers view people with a disability. Table 3.1 illustrated this change. Essentially, it involves acknowledging that people with a disability have the right to shape the nature of the service provided to them so that it matches both their needs and their desires. There are some aspects of the way we deliver many disability services that work against this philosophy. For example, from an administrative and financial viewpoint it is usually easier to provide group rather than individual activities. In many situations there is nothing wrong with groups of people with a disability engaging in the same activity; after all, humans are social creatures who enjoy company. However, if the group activity does not genuinely address the needs and desires of the people involved the relevance of the activity must be questioned. There is also an increasing recognition that person-centered planning should not just reinforce the dominant culture (Callicott, 2003). Achieving a person-centered approach in disability services is challenging. For example, in reviewing the British studies in this area Mansell and Beadle-Brown (2004) concluded that a minority of people with a disability had access to even individualised plans, let alone person-centered plans. A lack of resources available to services and a lack of training for staff have been noted as impediments to meaningful change (Felce, 2004). However, as explained in chapter 9, governments are increasingly developing disability policies that include person-centered approaches. This requires disability services to develop strategies to follow these policies. Later chapters give practical examples of the ways in which disability services can follow person-centered principles. Self-determination and choice Before explaining the terms ‘self-determination’ and ‘choice’ it is important to acknowledge that a basis for both terms is the idea of independence. It is also important to point out that independence may have more than one meaning. Perhaps the most commonly used meaning

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relates to self-sufficiency – the ability to look after oneself without the help of others. However, this definition overlooks the fact that all of us depend on others for some of our needs. A fuller understanding of independence includes the notions of being able to act for ourselves, and being free from control in our judgement and actions. Recent government policies in Australia have emphasised selfsufficiency as a goal for welfare recipients. One result of this emphasis is the principle of mutual obligation, which argues that people who receive benefits from the state, such as unemployment payments, have a responsibility to make a contribution in return, such as taking part in a work for the dole program. This policy emphasis is likely to continue for some time. However, many people with a disability are rejecting this narrow understanding of independence, and seeing independence in terms of self-determination and the ability to exercise control over their lives (Swain, French & Cameron, 2003). Whitney-Thomas and Moloney describe self-determination as knowing what one wants in life and having the mechanisms to achieve these goals … The self-determined individual knows a great deal about him or herself, has a clear vision for the future, feels a sense of control over the immediate environment and decisions, can self-advocate, and can muster the necessary supports to accomplish what he or she wants. (2001, p. 376)

In addition, Wehmeyer (2001) explained that someone’s behaviour may be regarded as self-determined if: • they acted freely • the behaviour was self-controlled, and • the behaviour was personally meaningful to the person. Personal choice is an important part of self-determination. The extent to which self-determination and opportunities for choice are implemented in disability services is largely determined by the professionals who deliver and manage those services. In a provocatively titled discussion, ‘Practice: Are professionals parasites?’, Swain, French and Cameron (2003) point out that professionals have the power to • assess people with a disability • describe their needs

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• allocate resources to them • evaluate the outcomes of their interventions. They further argue that the social status of professionals may thus depend more on existing power structures based on gender, class and ethnicity, than any claim to expert knowledge. (p. 133)

Even if you do not share these strong views, it is difficult not to recognise the power that professionals exercise over the lives of others. The ethical issues associated with the use of this power are explored in chapters 4 and 10. A positive example of the way in which self-determination and choice can be promoted by professionals is shown in box 3.1.

BOX 3.1 • MICHELLE’S STORY Local area coordination is an approach to supporting people with disabilities and their families in local communities. The local area coordinator works at the individual, family and community levels to bring about positive, sustainable changes that help the person with a disability live and participate fully in their community, and help families in their continued provision of care (Grimsley & Lavelle, 2001). The most powerful strategy used by the local area coordinator is to build strong, ongoing, supportive relationships with people with disabilities and their families. Michelle is a 42-year old woman who lives with her 12-year-old daughter in a rented home in a small rural town. Michelle is a sincere woman, with a sense of humour, and an intellectual disability. She and her daughter had been living with her mother, who provided most of Michelle’s support until she died several years ago. I met Michelle just after her mother passed away. Michelle’s parents were divorced, and her father was living and working in the city. He would ring her each weekend to check that everything was okay. Her mother also had a very good friend who lived nearby and would visit and keep an eye on Michelle and her daughter. I met both her father and her mum’s friend early on in my contact with Michelle. She asked me to join in when they all got together and tried to work out what they should now do for her, given that Michelle’s main support had gone. Her dad wanted her to move to Brisbane and live near him and his other daughter and her family. So did her mum’s friend. Both of them were unsure how she would cope.

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Michelle didn’t want to move. She felt settled in the town, and had friends she did not want to leave. I explained that I was there at Michelle’s request to support her existing relationships and to help her develop further contacts, networks and skills to help her live successfully where she wanted to live. Michelle, her father and her mother’s friend agreed that Michelle would remain in the home she had shared with her mother, with their (and my) support. Michelle’s father was suspicious of me at first; he was naturally highly protective of his daughter and obviously very concerned for her welfare. It took more than a year of slow and steady support for Michelle before he would trust me. When I began working with Michelle, she said that the things most important to her were improving her cooking skills, her money management and her household budgeting skills. Each week we would sit at the kitchen table while she practised writing up her budget. This also gave me a chance to get to know her well, hear about her week and chat about things that were important to her. With support and practice over the past four years, she has learned basic budgeting skills and now writes out her own weekly budget that includes income, expenses, amounts available for clothing, treats, travel, bills and so on. Over the past four years Michelle has developed a range of skills and a supportive network in her local community. She joined a local organisation as a volunteer friend. Part of her role there has been to cook lunch for herself, several friends and staff once a week. She has learned how to follow recipes, cook a wide variety of meals, trade recipes and expand her repertoire. Importantly, she has been able to offer her daughter a range of tantalising and healthy meals, something she was at first really worried about being able to do. As her confidence has improved in her role as a volunteer, she has explored options for other voluntary work. She has worked three days a week for a local charity and is currently contemplating part-time paid work as a cleaner. She has developed strong friendships with a number of people. She has gone on day and overnight trips with her friends and has successfully held birthday parties and slumber parties for her daughter’s friends, helped in the school tuckshop and been involved in local festivals and events. Her dad rings me when he visits to check that things are going well for his daughter. Besides my assistance, this is about the extent of Michelle’s involvement in disability-related services. Her life does not revolve around services and has not been greatly affected by them. She lives her life the way she wants without the intrusion of many paid services getting in the way of her friendships and networks.

Fiona Green, Local Area Coordinator, Cooloola, Disability Services Queensland (Grimsley & Lavelle, 2001)

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Awareness of the power imbalance between professionals and people with a disability can help us be alert to situations that disempower the people we support. For example, there is a common belief that the level of intellectual disability is reflected in the degree of self-determination possible. The logic is that people with severe intellectual disability, because of their significant cognitive impairments, do not have the capacity to be as self-determined as people with milder intellectual disability. However, research by Wehmeyer and Garner (2003) suggests that the situation is not so simple. In a group of over three hundred adults with intellectual and developmental disability they found that while intellectual capacity and self-determination were related, the correlation was quite low. That is, a low IQ didn’t necessarily mean equally low self-determination levels. What the researchers found was that the environment in which the person lives plays a crucial role in influencing day-to-day events and outcomes for people with a disability. They argued that being self-determined is not a function of how much you can do for yourself, behaviourally, but instead is a function of how much you make or cause things to happen in your own life. (p. 263)

For people with both intellectual disability and communication problems, making desirable things happen in your life can be difficult. That is, if the person can’t express their desires in a way that is understandable to carers, or if carers don’t take the time to understand the people they support, achieving self-determination is unlikely. However, a wide range of augmented forms of communication can be used to overcome this problem. Cameron and Murphy (2002) describe the successful use of talking mats to help people with an intellectual disability indicate their likes and dislikes, and express their preferences among available choices. Each mat comprised a series of pictures related to a set of activities, as well as representations of three emotions (a smile for things that are liked, balancing hands for things that the person is not sure about, and a sad face for things that are not liked). Blanks were also included on the mats so that other choice options could be added by the user. While there is a range of practical strategies that support staff may use to encourage choice, staff members’ understanding of what ‘choice’ is can be faulty. Wareing and Newell (2002, p. 420) are critical

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of the way in which staff sometimes construct a distorted version of choice, and argue that ‘choice is really the choice you have when you are not having a choice’. Their point is that the range of options made available to people with a disability may be so limited that choosing one of them may not constitute a genuine choice at all, or the options may be presented by staff in a way that does not allow genuine choice. Another aspect of self-determination that needs to be discussed here relates to the way in which disability services are funded. The dominant funding model used in western countries involves the provision of public money to organisations that in turn provide services. A problem with this approach is that decisions about how the funding is used are made by the organisations and their paid staff, which limits the self-determination of people with a disability. It can also create a conflict of interest. For example, some organisations may use the funding in a way that maintains the employment of their staff rather than a way that meets the needs and desires of their clients. Lord and Hutchinson (2003, pp. 84–5) illustrate this conflict by asking: ‘How can a consumer have genuine choice when people facilitating their planning for support services are often employees of the very agencies that provide that support?’ In the past decade, individualised funding – providing the support money directly to the person with a disability rather than to the service – has become more common. Brokers skilled in giving information and assistance to people with a disability and their families in choosing and accessing services may act as independent mediators between people with a disability and community services. This approach is consistent with the person-centered principles discussed earlier in this chapter. It is also recognised as a means by which choice and self-determination may be encouraged. Following case studies of ten individualised funding projects in several countries, Lord and Hutchinson (2003) found a range of positive personal and community outcomes. These outcomes included: • increased choice and control • expanded community participation • improved relationships with family and friends • increased community networks • cost-effective use of funds.

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The individualised funding approach should not be confused with the case-based funding being increasingly introduced in Australia (see FACS, 2004a, for an example). Here, while funding is provided to services on the basis of a person’s assessed need, the person does not have direct access to the funding. Inclusion and the least restrictive environment A traditional approach to supporting people with a disability has been to assume that the best support is provided in a facility such as an institution where intensive supports, such as medical and therapy services, can be provided. Although aspects of this approach can help, one problem is that this strategy limits people’s engagement with the community, and their citizenship. Rioux (2002, p. 216) explains that citizenship relates to the interaction between rights and responsibilities, access and belonging. Further, most citizens have both the right and the capacity to participate, but people with a disability may have neither. The principle of the least restrictive environment has been used extensively by disability services to shape the way in which people with disabilities are included in society. The principle states that you are not justified placing someone in a restrictive setting (such as an institution) if a less restrictive setting (such as a community home) can be appropriately used. Further, if someone is placed in a restrictive setting (that is, one that is different from what people without a disability would expect), a goal should be to move that person into a less restrictive environment as soon as possible. Figure 3.2 shows a continuum of residential options for people with a disability arranged from the most restrictive to the least restrictive setting. FIGURE 3.2 CONTINUUM OF ACCOMMODATION OPTIONS (adapted from Taylor, 2001)

institution

group home

most restrictive/ least inclusive

semi-independent living

independent living

least restrictive/ most inclusive

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BOX 3.2 • EMPLOYERS’ FORUM ON DISABILITY GLOBAL INCLUSION BENCHMARK The organisation’s report will include: •

an Equal Opportunities or diversity statement that explicitly includes disability

•

a Corporate Social Responsibility strategy which explicitly commits to addressing disability

•

a commitment to engage with stakeholders with a disability

•

a named board director who has a designated responsibility for disability

•

indicators and targets to measure the performance in relation to disability aspects of the Corporate Social Responsibility strategy and in relation to stakeholders with a disability

•

company performance on recruitment, retention and career development for employees with a disability

•

the impact on people with a disability of employment practices that may affect every employee (e.g. safety issues)

•

efforts to make company products, services and the built environment more accessible to people with a disability

•

involvement in partnerships with government and non-government organisations to improve the company’s capacity to become disability confident

•

details of the disability dimension of any investment to encourage social inclusion and community economic development.

Employers Forum on Disability (2003)

While this principle has been and continues to be helpful in how we organise services, it can be abused. Taylor (2001) argues that there are major flaws in the principle, and that if we are serious about promoting community living for people with a disability we must abandon restrictive placements entirely. For example, the principle can be used as an excuse to keep people in less inclusive settings until they are ‘ready’. That is, because a person does not have the skills or behaviours required for full participation in a less restrictive environment, we are justified in keeping them in a restrictive environment until they develop those skills and behaviours. Clearly, if we used this argument consistently very few people with a disability would have access to inclusive settings.

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Our challenge as professionals is to address both the aspects of participation mentioned by Rioux (2002) – both the right and the capacity to participate in the community. The workplace is one important setting in which participation by people with a disability may occur. Employment for people with a disability, particularly in a regular community setting, may provide opportunities for inclusion in mainstream society. A measure of our success in this area can be obtained through an examination of the way in which major corporations respond to disability. In the UK, the Employers Forum on Disability (2004) promotes the economic and social inclusion in the workplace of people with a disability. Their 2003 Global Inclusion Benchmark reported on corporate leadership in this area. The ten indicators of inclusion appear opposite in box 3.2. The key 2003 benchmark findings were based on an analysis of the reports of 68 prominent companies in the UK. The findings noted that 32 per cent of the companies demonstrated a real commitment to people with a disability, compared to just 20 per cent in the previous year. While 66 per cent included disability in their equal opportunities policy, only six per cent included reference to a board member with responsibility for disability. However, for many people with a disability, particularly people with severe disability for whom paid work may not be achievable, leisure and other community activities become significant as a means by which inclusion may be realised (Aitchinson, 2003). Box 3.3 demonstrates a way in which people with a disability may be included in community activities. In this case, drama and performance are used as a means by which inclusion is achieved.

BOX 3.3 • WELCOME TO THE WILD WORLD Somersault is a Community Cultural Development (CCD) (2004) project for people with intellectual and multiple disabilities. As the name suggests, it intends to turn things on their head. Designed as a springboard to enable participation by people with intellectual disability in artistically challenging multimedia workshops, installations and performances, it was created and produced by Tony Doyle, through his

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community arts company Tony Doyle Visions. Tony had previously been the director of Arts in Action (2004), the South Australian disability and arts peak body, for over a decade. Tony’s experience as a person with a lifelong visual disability, experience working in the disability arts field and commitment to the principles and values of the local and global disability culture movement were the catalysts for the project. Somersault involves people with disabilities at all levels and is directed by someone with a disability, which is in keeping with the disability culture model. An inclusive CCD approach is a primary principle in Somersault’s work. It involves working with groups and communities and allowing the community of focus to have as much say as possible in the direction of the project. Somersault is a partnership between arts, disability and local government, with initial funding provided by the South Australian Disability Services Office and Arts SA Health Promotions, in-kind support from local government and support from the Australia Council for the Arts through their funding of Tony’s CCD Fellowship. Collaborators include the Intellectual Disability Services Council, day activity providers, community supported accommodation workers and local government. It’s a multi-stage project, envisioned to run from three to five years in order to be effective in stimulating personal and community changes. Somersault stage one began with a series of workshops from September 2003 to June 2004 with about sixty-five participants drawn from day-activity-providing organisations and the Strathmont Centre, a residential centre run by the Intellectual Disability Services Council. The outcomes of the first stage were featured in a multi-media installation and performance during the High Beam Festival for Disability Arts held in May 2004 in Adelaide. Somersault’s components include journey, celebration, and an installation that transforms environments through the arts, specifically at places used by people with disabilities. In this case, the Enfield community centre in Adelaide became a place of surprise and wonder with visual and auditory stimulating environments to travel through and interact with. The site attracted several hundred people over a week of activities. There were over two hundred people at the opening celebration, about fifty participating in workshops and around seventy at the closing community sing-along. Somersault is about opening up a model where people with disabilities, support workers, CCD artists and, gradually and increasingly, members of the broader community can embark on a process of group creativity to work on something of significance between them. It offers people with intellectual and multiple disabilities an alternative model to the assimilation approach to services. Tony defines this approach as an initial response to the segregation of people with disabilities with the purpose of incorporating them into mainstream or generic culture while recognising their individuality and valuing their differences.

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From Tony’s perspective, the assimilation model doesn’t provide much support for people to do things collectively through the affinity of disability. He believes there is a need to make opportunities to creatively build up disability community pride and dignity. Somersault sets up a framework and process that continuously opens up space for input and direction from people with disabilities. This means that people with disabilities are negotiating integration from a position of community strength and support. Somersault is an opportunity to experience the excitement and adventure of creative exploration and discovery. As Tony says:

Things happen when you build up trust and confidence and people begin to take some risks. Who wants to live in a tame world when your world is already relegated to tameness, by disability, and by public attitudes? Readers interested in disability culture and the arts and community cultural development may find the following resources useful: •

Disability and the Arts (Australia Council) (www.ozco.gov.au/ council_priorities/disability)

•

Disability Arts Disadvantage Arts Australia National Network (www.dadaanat.net.au)

•

Community Arts Network: Reading Room Readings in Arts and Disabilities (www.communityarts.net/readingroom/resdislinks.php)

•

Community cultural development in Australia (http://www.ccd.net/)

•

Independent Living Institute (www.independentliving.org/)

(Susan Maley, Disability Arts Researcher, Artistic Program Director, Arts in Action 2003–2004; Artistic Director, High Beam Festival May 2004 – Arts in Action, 2004)

Globalisation and economic rationalism Disability services operate under the constraints of policies pursued by governments at the state and the national level. For example, several state and territory governments in Australia have agreed to eventually close down institutions that cater for people with developmental disabilities, which will change how some services operate. However, any policy decision will have a range of social, political and economic consequences. In the case of deinstitutionalisation, one economic consequence has been a major increase in the funding of community-based disability services (AIHW, 2003). Increases in funding can be achieved by:

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• increasing taxation • finding efficiencies in the way we run existing services, or • transferring funds from one area to another. Each of these options will have some effect on a range of individuals and groups in our society. In simple terms, a change in policy may result in both winners and losers. While changes in how we support some groups in society can lead to a complex analysis of the costs and the benefits of that change for everyone, the situation has become even more complicated in recent times because the policies followed by individual countries are increasingly influenced by the international community. A term that captures this recent trend is globalisation. Globalisation involves the movement of capital – that is, assets and resources – around the world. For example, a company based in a western country may decide to move many of its resources to a third world country where the cost of labour is much lower. The company’s production costs are thereby reduced, making it more competitive. This means that governments may compete with each other to attract investment, which in turn compels them to follow policies of low inflation, low taxation, low public spending and the privatisation of public services. Rioux (2002) argues that there is a tension between the achievement of the social justice principles discussed earlier in this chapter, and the economic efficiencies associated with globalisation. She claims that ‘the narrower perspectives of efficiency and profitability have replaced these [social justice] goals’ (p.219). As Holden and Beresford note, there has been little discussion of globalisation in relation to, or by, people with a disability. However, they argue that key features of globalization, like the deregulation of capital, the labour market and employment conditions, will have similar effects to earlier industrialization in terms of maintaining exclusions and the link between poverty and disability. (2002, p. 194)

There are some dissenting voices. Brooks (2004) claims that global poverty rates are falling, particularly in Asian countries, and that this can be attributed to globalisation. How the effects of globalisation will play out is yet to be seen. On the one hand, having flexible labour markets that encourage casual

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work could help give people with disabilities employment opportunities. On the other hand, unemployment rates for people with a disability are high, and there is evidence that recent Australian policy on finding employment for people with high support needs has not been successful (Australian Healthcare Associates, 2001). Economic rationalism is another term associated with the efficient use of capital and resources. Briefly, it is an approach to improving the economic efficiency of organisations through measures such as reducing the workforce and the privatisation of government services. But there can be tension between economic rationalism and the needs of the community. A fundamental problem for decisionmakers in providing disability and other community services is how to allocate the scarce resources available to them. This problem is well illustrated by our community’s rising expectations about the level of health care provided to us all within the constraints of existing budgets. It is common to hear of shortages of hospital beds and long waiting lists for elective surgery. In the disability area, there is well documented unmet need for services. For example, in 1998 there were an estimated 23 600 primary carers of people with a disability who needed respite but had never received it. In 2001 there were at least six times more people seeking disability services and on waiting lists than there were people coming off these lists, and many people with disabilities were using services for the homeless (AIHW, 2002). Given these pressures, decision-makers typically seek information concerning the efficiency of services to ensure that the limited funds available to them are used effectively. At the most basic level, this may require a report from the service to show that funds are producing desired outcomes – for example, that people with a disability are being provided with meaningful work, and receiving fair pay for it. A good example of this type of accountability is the quality assurance processes that Commonwealth-funded disability employment services complete (FACS, 2004b). At a more complex level, the information sought may involve examining the cost effectiveness of particular services, or comparing one model of service with another (Gray & Vale, 2003). Another line of investigation that governments have begun to take involves the economic costs associated with illness and disability. You will be aware of the increasing social pressure on smokers to

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quit. This pressure is, in part, generated by concern about the significant health costs associated with smoking. Put simply, if those health costs could be reduced the savings could be used for other useful purposes. The cost of disability can also be estimated. Honeycutt and colleagues (2004) reported that the average US lifetime cost per person in 2003 for intellectual disability was $1 014 000, for cerebral palsy $921 000, for hearing loss $417 000, and for vision impairment $566 000. There estimates were based on the value of productivity losses in the workplace and the household when people with a disability die prematurely, are unable to work, or are limited in the type of work they can perform. In Australia, 40 per cent of state and territory welfare funding goes to services for people with a disability, and for the period 1998–99 to 2000–01, growth in funding for these services averaged 6.9 per cent each year, the area of most rapid growth for all welfare services (AIHW, 2003). No doubt this information is of interest to economists and to policy developers. However, an undesirable result may be that people with a disability are commoditised, and their status diminished because they are seen to be of less value than ‘productive’ members of society.

The challenge of transferring principles into practice It is important that our day-to-day work – our work practice – is based on evidence that shows these practices are likely to be effective. Put another way, there should be proof that what we do works. Many of the examples of work practice discussed in this book report the results of research that demonstrates the effectiveness of various approaches. We need to be aware of this research, if for no other reason than that we need to work as effectively as we can with people with a disability because they may learn skills more slowly than other people, and because they may be highly vulnerable to abuse and discrimination. Having said this, it is also necessary to acknowledge that many of the ways in which we aim to support people with a disability are based on values that can be difficult to measure and evaluate. The problems in measuring quality of life, discussed earlier, illustrate this difficulty. At the moment, the best we can do is to check on what we think are some key indicators of quality of life (physical comfort,

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friendship networks and so on). Another difficulty is that principles can develop faster than our ability to consistently implement and evaluate them. A good example of this is the notion of a personcentered approach in disability services. This approach has gained momentum in recent years, but it is acknowledged that currently we do not have evidence that it produces the intended outcomes (Emerson & Stancliffe, 2004; Mansell & Beadle-Brown, 2004). This isn’t necessarily a reason for not using the approach, but it does mean that we need to keep checking to see if what we are doing is having the results we expect. Ultimately, it’s the application of both evidence-based practices and appropriate attitudes by support staff that are likely to make a difference to the lives of people with a disability and their families. In relation to attitudes, the value that we place on the people we support is crucial. Emphasising difference and deficiency at the expense of personhood will not produce the desirable outcomes related to the principles covered in this chapter. As Clare and Cox explain: From this (i.e. a deficient) perspective, the views of the person with cognitive impairment may be considered invalid or unreliable by virtue of the presence of brain damage. Similarly, the person’s competence to consent to participation, and thus to contribute his or her views, may be assumed to be lacking by virtue of the diagnostic label assigned. The presence of difficulties in communicating can be taken to imply that the person is not able to give their views. (2003, p. 944)

This notion of valuing people with a disability is inherent in their roles as citizens. Being a citizen requires both the right and the capacity to participate (Rioux, 2002). People with a disability may lack the right to participate because of social structures that assume incompetence and maintain control, and they may lack the capacity to participate because of the poor design of services, and the lack of support to fully access the community. This raises the issue of balancing different perspectives, because the perspectives of the carer and professional may be different from those of the person with a disability. Typically, carers’ and professionals’ needs tend to dominate at the expense of others. This is not to say that the needs of support staff should be ignored; just that they should be balanced against those of the person with a disability. This is not an easy task. But ultimately it is achieved through

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an appreciation of relationships, such as the relationships the person with a disability has and desires with their immediate and wider networks (Henderson & Forbat, 2002).

Conclusion This chapter has discussed the relationship between our beliefs (principles that we believe we should follow), law and policy, and our workplace practices. Much of this discussion has focused on principles such as quality of life, inclusion, person-centred approaches and social justice. While these and other principles have developed recently and will be subject to further change, it is important that we are aware of them and their relationship to what we do in the workplace. As laws and policies do not cover every aspect of our day-to-day work, we rely on a good understanding of principles to give us guidance. Of course, just knowing about principles will not, on its own, bring about meaningful change for people with a disability. Our attitudes and those of our colleagues and supervisors, the level of support we receive in the workplace, and government and other funding are other important influences on our ability to do the best job we can.

Learning activities 1

Using figure 3.1, develop some real life examples from the general community and from disability services that demonstrate the relationship between principles, legislation and policies, and practice.

2

Discuss the notion that ‘inclusion’ is much more than the physical placement of people with disabilities in the community. Then reflect on the arguments about inclusion and least restrictive environment in this chapter. To what extent are the most inclusive accommodation settings shown in figure 3.2 achievable and desirable?

3

From the indicators shown in table 3.1, what are some real-life behaviours of people with a disability and the people who support them that might demonstrate ‘rights-based’ and ‘charitybased approaches’?

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4

Examine the following quote about quality of life from Shalock and Alonso (2002): ‘… the quality of life concept has extended beyond the person and has now influenced an entire service delivery system because of its power as a sensitising notion, social construct, and unifying principle’ (p. 367). Give examples of ways in which the quality-of-life principle can be implemented by individual disability support workers and by disability services.

5

Identify some barriers to the implementation of person-centred approaches in disability services.

6

Survey large business organisations in your local area about the degree to which they are ‘disability friendly’. Some of the benchmarks in box 3.2 may assist you in developing survey questions.

References AIHW see Australian Institute of Health and Welfare Aitchinson, C. (2003). From leisure and disability to disability leisure: Developing data, definitions and discourses. Disability & Society, 18, 7, 955–69. Australian Healthcare Associates (2001). Stage 1 final report: Disability service provision for people with high support needs. Melbourne: Australian Healthcare Associates. Australian Institute of Health and Welfare (2002). Unmet need for disability services: Effectiveness of funding and remaining shortfalls. Canberra: AIHW. Australian Institute of Health and Welfare (2003). Welfare expenditure Australia 2000–2001. Canberra: AIHW. Batavia, A. I. (2001). The new paternalism: Portraying people with disabilities as an oppressed minority. Journal of Disability Policy Studies, 12, 2, 107–13. Brooks, D. (2004). Here’s one for the water cooler: Globalisation works. Sydney Morning Herald, November 29. Retrieved November 29, 2004 from Byrnes, A. (2004). The proposed UN draft convention on the human rights of persons with disabilities: What’s in it, and what isn’t? Paper presented at a human rights and equal opportunity workshop on the UN Draft Convention, March 2004. Retrieved November 29, 2004 from Callicot, K. J. (2003). Culturally sensitive collaboration within person-centered planning. Focus on Autism and Other Developmental Disabilities, 18, 1, 60–8. Cameron, L. & Murphy, J. (2002). Enabling young people with a learning disability to make choices at a time of transition. British Journal of Learning Disabilities, 30, 105–12. Clare, L. & Cox, S. (2003). Improving service approaches and outcomes for people with complex needs through consultation and involvement. Disability & Society, 18, 7, 935–53. Department of Family and Community Services (2004a). Case-based funding. Retrieved June 15, 2004 from Department of Family and Community Services (2004b). Quality Assurance for Disability

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Employment Services. Retrieved June 17, 2004 from Disabled People International (2004). Retrieved June 15, 2004 from DPI see Disabled People International Emerson, E. & Stancliffe, R. J. (2004). Planning and action: Comments on Mansell & Beadle-Brown. Journal of Applied Research in Intellectual Disabilities, 17, 23–6. Employers Forum on Disability (2003). Global inclusion benchmark: An insight into corporate leadership on disability. London: Employers Forum on Disability. FACS see Department of Family and Community Services Felce, D. (2004). Can person-centered planning fulfil a strategic planning role? Comments on Mansell & Beadle-Brown. Journal of Applied Research in Intellectual Disabilities, 17, 27–30. Gray, A. & Vale, L. (2003). Economic evaluation for decision-making. In A. Scott, A. Maynard & R. Elliott (Eds), Advances in health economics (pp. 59–75). Chichester: John Wiley. Henderson, J. & Forbat, L. (2002). Relationship-based social policy: Personal and policy constructions of ‘care’. Critical Social Policy, 22, 669–87. Holden, C. & Beresford, P. (2002). Globalization and disability. In C. Barnes, M. Oliver & L. Barton (Eds), Disability studies today (pp. 191–209). Oxford: Blackwell. Honeycutt, A., Dunlap, L., Chen, H. & Homsi, G. (2004). Economic costs associated with mental retardation, cerebral palsy, hearing loss, and vision impairment: United States 2003. Morbidity and Mortality Weekly Report, 53, 3, 57–9. Lord, J. & Hutchinson, P. (2003). Individualised support and funding: Building blocks for capacity building and inclusion. Disability & Society, 18, 1, 71–86. Mansell, J. & Beadle-Brown, J. (2004). Person-centered planning or person-centered action? Policy and practice in intellectual disability services. Journal of Applied Research in Intellectual Disabilities, 17, 1–9. Nirje, B. (1985). The basis and logic of the normalization principle. Australia and New Zealand Journal of Developmental Disabilities, 11, 2, 65–8. Powers, L. E., Ward, N., Ferris, L., Nelis, T., Ward, M., Wieck, C. et al. (2002). Leadership by people with disabilities in self-determination systems change. Journal of Disability Policy Studies, 13, 2, 125–33. Quinn, G., Degener, T., Bruce, A., Burke, C., Castellino, J., Kenna, P. et al. (2002). Human rights and disability: The current use and future potential of United Nations human rights instruments in the context of disability. New York: UN. Rapley, M. (2003). Quality of life research: A critical introduction. London: Sage. Rioux, M. H. (2002). Disability, citizenship and rights in a changing world. In C. Barnes, M. Oliver & L. Barton (Eds), Disability studies today (pp. 210–27). Oxford: Blackwell. Schriner, K. & Scotch, R. K. (2001). Disability and institutional change. Journal of Disability Policy Studies, 12, 2, 100–6. Schwartz, C. & Rabinovitz, S. (2003) Life satisfaction of people with intellectual disability living in community residences: Perceptions of the residents, their parents and staff members. Journal of Intellectual Disability Research, 47, 2, 75–84. Shalock, R. & Alonso, M. A. V. (2002). Handbook on quality of life for human service practitioners. Washington, DC: AAMR. Source Databases (2003). Disability and human rights. Retrieved August 6, 2004 from Swain, J., French, S. & Cameron, C. (2003). Controversial issues in a disabling society. Buckingham: Open University Press. Taylor, S. J. (2001). The continuum and current controversies in the USA. Journal of Intellectual & Developmental Disability, 26, 1, 15–33. Thomas, D. & Woods, H. (2003). Working with people with learning disabilities: Theory and practice. London: Jessica Kingsley.

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Wehmeyer, M. L. (2001). Self-determination and mental retardation. In L. M. Glidden (Ed.), International review of research in mental retardation, vol. 24. (pp. 1–48). San Diego, CA: Academic Press. Wehmeyer, M. L. & Garner, N. W. (2003). The impact of personal characteristics of people with intellectual and developmental disability on self-determination and autonomous functioning. Journal of Applied Research in Intellectual Disabilities, 16, 255–65. Wareing, D. & Newell, C. (2002). Responsible choice: The choice between no choice. Disability & Society, 17, 4, 419–34. Whitney-Thomas, J. & Moloney, M. (2001). ‘Who I am and what I want’: Adolescents’ self-definition and struggles. Exceptional Children, 67, 3, 375–89. Windschuttle, K. (2004). Language wars. Quadrant, 48, 5, 13–9. Wolfensberger, W. (1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21, 6, 234–9.

PA RT 2

WORKING WITH PEOPLE WITH DISABILITY

4

Supporting empowerment and choice-making Karen Nankervis and Roger J Stancliffe

Learning objectives After reading this chapter and completing the activities you should be able to: • understand the relationship between power, choice, and selfdetermination • understand the issues pertaining to choice and decision-making for people with disabilities, and how these affect their day-to-day lives • understand the legislative mechanisms available to protect the rights of people with disabilities who are unable to make major life decisions for themselves • describe the ways in which the preferences of people with communication or cognitive difficulties can be accurately identified. • apply a framework to everyday risk assessment and understand the relationship between risk and benefit when helping people with a disability to make choices • describe the organisational issues that impede or facilitate empowerment, choice and decision-making for people with disabilities.

Introduction Most people with disabilities have expectations and dreams, and like others want to control the decisions concerning their lives as much as possible. Most persons with disabilities want to have friends, be able

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to choose to be involved in the social relationships that make up their community, to feel valued and to be economically and/or socially productive, to be able to choose to participate as citizens in government, to have the choice to take risks that are necessary to achieve goals meaningful to them, to have the choice to be a romantic or sexual person, and so on. In short, most persons with disabilities want for themselves the same choices others in the community want. (Goode, 1994, pp. 147–8)

Choice-making, empowerment, autonomy and independence are integral to the quality of life of all people, including those with disabilities (Treece, Gregory, Ayres & Mendis, 1999) and the right of people with disabilities to autonomy and self-determination is well recognised. However, the experience of many disability support service users, especially those with developmental disabilities, is that choices and decisions that are generally taken for granted (such as when and what to eat, or what to wear) may be denied to them. The choices that are often denied can be very simple, for instance how to spend recreation time (you have to go bowling every Wednesday night because that is what everybody in the house does on that night), or even being able to stay at home when you are sick. More significant examples that have been cited include not having the choice of who you live with or even who you share your room with (Jenkinson, Copeland, Drivas, Scoon & Yap, 1992; Parmenter, Briggs & Sullivan, 1991; Treece et al., 1999), and involuntary sterilisation (Jones & Basser-Marks, 2000). This chapter explores the issues of choice, decision-making and providing support to facilitate the development of autonomy and self-determination, particularly for people with developmental disabilities and/or significant communication difficulties.

Power, power sharing and self-determination Before we look at choice and decision-making, it is useful to examine the issues of power and self-determination as they affect people with disabilities. Self-determination is described by Wehmeyer as acting as the primary causal agent in one’s life and making choices and decisions regarding one’s quality of life free from undue external influence or interference. (2004, p. 351)

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Those who are supported by formal service providers often find themselves in positions of powerlessness, their lives controlled by others. In particular, people with an intellectual disability may find that the label itself leads to choice-making limitations being imposed on them, resulting in the denial of decision-making opportunities on the basis of an untested assumption of their incapacity to understand and make decisions (Kennedy, 2000; Peter, 2000). O’Brien and O’Brien (1997) argue that service users with an intellectual disability experience an inherent power imbalance between themselves and paid staff. They describe three sources of power imbalance that favour staff: • The need for personal assistance with the basic activities of daily living, and for cognitive facilitation to understand information and make decisions, means that staff have the power to decide when, how, and even whether such assistance is given. • Staff typically have much more control of their own everyday lives and have a higher status than most of the people with an intellectual disability for whom they are providing support. • Staff can leave, moving on to another job if their current job becomes unsatisfactory, whereas few people with an intellectual disability can initiate changes to either services or workers. O’Brien and O’Brien argue that this issue must be managed, and that there must be power sharing between staff and service users through the creation of relationships that support the person to increase the level of control they exercise over their own lives. Where staff engage in power sharing they must make themselves physically and emotionally available to understand, accommodate, and promote the explorations, participation and contribution of people who would otherwise be excluded or marginalized because of the social and physical effects of disability. (p. 208)

A power-sharing relationship between staff and service users can be a vehicle for self-determination (Nankervis, Hamilton & Neville, 2001). Self-determination is influenced by three factors (Wehmeyer, 1999): • individual capacity, which is related to learning and development • opportunity, which is influenced by the environment and personal experience

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• supports and accommodations for people to make choices, participate in decision-making and experience control in their lives. As such, self-determination is influenced and supported through power sharing, with staff helping people with disabilities to develop the competencies that lead to self-determination as well as creating opportunities and supporting the person to make decisions and exercise control. There is a reciprocal relationship between the development of self-determination and the experiences of control and choice-making (Wehmeyer & Bolding, 1999). As staff share power, people with disabilities have more opportunities to become more self-determined. As they become more self-determined they will be more likely to assume control, make more choices, develop greater skills in decision-making and problem-solving and have greater confidence in their ability to take control of their lives. Choice for people with a disability We all encounter a very wide array of choices in our lives. Choices can vary from simple, inconsequential daily choices (what to have on one’s toast at breakfast), to complex, major life decisions (medical treatment, managing one’s finances, what job to take, where to live). Decisions such as what to have for breakfast are essentially a matter of individual preference and do not require the decisionmaker to carefully gather information and weigh up options before making a decision. These sorts of choices should be available to all, and usually require little or no help (see Preference assessment on page 91 for more about this). More complex choice decisions are much more cognitively demanding, and people with cognitive impairments may need significant help to enable them to gather information, organise and evaluate it. The more complex and important the decision, the more likely people with cognitive impairments are to need help with it. Foxx, Faw, Taylor, Davis and Fulia (1993) provide an excellent example of an effective way to help people with an intellectual disability make well-considered decisions about such complex matters as where to live (see box 4.1). No-one, with or without a disability, has total control over every aspect of life. Some decisions are made independently, and some are made jointly with other people. Many decisions require that we con-

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BOX 4.1 • EXAMPLE OF AN EFFECTIVE APPROACH TO HELPING PEOPLE WITH AN INTELLECTUAL DISABILITY MAKE A COMPLEX LIFE DECISION Foxx et al. (1993) helped six institutionalised adults with mild intellectual disability to learn to gather information about the community living settings to which they might move. The intervention consisted of three components. •

A 30-item preference questionnaire was used to determine each person’s community living preferences in matters such as the person’s freedom to go out when they want, private bathroom use, having their own bedroom, and policies on smoking. The questionnaire used either/or questions and photos of the two alternatives for each item (for example, a photo of a single bedroom and a photo of a shared bedroom).

•

Each person’s ten strongest community living preferences were identified. The participants varied greatly about what was particularly important to them. Also, half the items that participants regarded as important were rated as being unimportant by community group-home staff. (When community placement decisions are made predominantly by staff they may well be based on criteria that are quite different from those considered important by the person concerned.)

•

Participants were taught to ask questions of group-home staff about each of their community living preferences and record the answers using a lifestyle-preference photo album. For example, if having a pet was an important issue for a person, that person’s album would contain a photo of a pet to remind them to ask if pets were allowed. Each page of the album also had three boxes labelled yes, no and maybe where the person recorded the answer. Participants also learned how to accurately report back the information they obtained to their social worker. At baseline, during a tour of a possible future community living placement, participants asked few if any questions about their community-living preferences. Following training, very impressive improvements were reported both for obtaining information and reporting it correctly.

(from Foxx et al., 1993)

sider others’ needs and preferences. For example, family activities usually involve joint decision-making by family members. A person may also voluntarily give (partial) control over some aspect of their life (for example finances or medical care) to others whom they trust, or base their decisions on expert advice (for example from accountants

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or doctors). Note that the person is free to reject expert advice and reassert total control over the decision. These examples apply to decision-making by everyone in the community. Regrettably, people with disabilities sometimes have their choice removed because others simply make the decision for them (sometimes without even consulting them), or because the range of options offered is so limited (for example, the choice of outof-family-home accommodation is restricted to a single vacancy and a take-it-or-leave-it option) that there is effectively no real choice. As noted above, people with a disability are often particularly vulnerable to loss of freedom of choice because their disability causes them to rely on others for assistance in some or most areas of life. At best this assistance involves negotiation with the caregiver about when and how help is given. At worst the person’s choices are constrained because of restrictions on the caregiver’s availability or willingness to help with a particular activity. Ask any person with a disability about the frustrations of waiting for an accessible taxi, or dealing with a caregiver who thinks they ‘know better’. It will quickly become apparent that depending on others for assistance has costs in terms of freedom of choice as well as benefits in being able to do things that would not be possible without help. There are a few situations in which staff cannot offer a real choice. For example, they are normally expected to ensure that clients take their medication (that is, remind, assist and encourage the person to take the medication; there is never a reason to use force). It is important not to pretend to offer a choice out of misplaced politeness where no real choice exists. It is patronising and possibly confusing to ask a client ‘Would you like to take your tablets?’ if that person is required to take their medication regularly and there is no genuine option to say no. But even though there is no real choice in this situation, the issue can still be presented in the context of a related choice: ‘It’s time to take your tablets. Would you like to take them with tea or water?’

Guardianship and financial management People with disabilities can and do make informed choices and give consent across the range of decisions and choices throughout their lives. However, some people with significant disabilities are unable

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to make important decisions independently, and need another person to help them make decisions or even act on their behalf and in their best interests. In this situation it may be necessary to invoke legislative mechanisms such as guardianship to support the person with a disability and to protect their rights and freedoms. It is generally assumed that adults have the capacity to understand the nature and consequences of the decisions they make (such as consent to medical treatment), so they are deemed to be legally competent (Jones & Basser-Marks, 2000). However, an adult who is not competent to make informed decisions due to their cognitive impairment may require another person to have legal authority to make decisions for them. This person may be a guardian or a legally appointed administrator or manager. While parents are the legal guardians of children, adults can only have a guardian appointed by a court or tribunal (O’Sullivan, 1999). Guardians can be authorised to make all the decisions for a person (full or plenary guardianship) or be given legal decision-making authority in specific areas of the person’s life (limited guardianship). Full (plenary) guardians have legal authority to make all nonfinancial decisions about the person with a disability. Limited guardians may only determine issues over which they have expressly been given legal decision-making authority in the guardianship order; for example, deciding where the person lives or whether to consent to a particular medical procedure. In many jurisdictions, including Australia, guardians are required to make decisions that are in the best interests of the person with a disability, and must consult with the person and seek their views. Contemporary Australian guardianship legislation favours limited guardianship over full guardianship, with the intention of restricting the person’s loss of decision-making authority to those areas where there is a demonstrated need for a substitute decisionmaker. Australian guardians are usually appointed for a specified number of years or other period, after which the need for continued guardianship is formally reviewed by a tribunal. In Australia, financial decision-making is often separated from the guardianship function, and handled by an appointed administrator or financial manager (Guardianship and Administration Board Act 1986; Lester, 2000). Relatively few people with a developmental disability require

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the formal appointment of a guardian – most can make their own decisions, or have family, friends or other supports to assist in informal decision-making (O’Sullivan, 1999). Guardians or administrators are usually only appointed where the person faces particularly significant decisions. Guardianship laws presume that an adult has the ability to make decisions until it is proven otherwise (O’Sullivan, 1999). For this reason a person’s capacity for consent must be assessed directly, and careful consideration must be given to their ability to understand the nature and consequences of the decisions that must be made. Lack of competence should never simply be assumed because a person has a disability (Jones & Basser-Marks, 2000). Guardianship laws are intended to ensure that the rights of people with disabilities are protected, yet guardianship takes away some of a person’s legal rights to make their own decisions (Carney & Tait, 1997). Therefore, there must always be very careful consideration of the need to appoint a guardian for a person with a disability, as this action removes some decision-making authority and hence opportunities for the person to learn from their experiences and further develop their autonomy, self-determination and maturity (O’Sullivan, 1999). It is essential that a range of supports in decision-making are explored before guardianship is sought. The possibilities include: • self-advocacy (through educating and training people with disabilities to speak for themselves, or groups of people with disabilities speaking on behalf of others) • citizen advocacy (a community friend speaks up on the person’s behalf), or • formal, systemic advocates such as the Victorian Public Advocate (Guardianship and Administration Board Act 1986).

Choice and degree of cognitive impairment Guardianship represents society’s formal response to the decisionmaking difficulties of a number of people with cognitive impairments. People with more severe impairment are usually judged to be less competent at making their own decisions, and are therefore more likely to have their decision-making powers formally restrict-

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ed through guardianship. Stancliffe, Abery, Springborg and Elkin (2000) have shown that among people with equivalent abilities, those with no guardian exercised more personal control over decisions (including day-to-day decisions) than those with a guardian with limited powers, who in turn exerted more personal control than those with a full (plenary) guardian. That is, the more restrictive the guardianship arrangements the greater the loss of freedom and personal control by the individual. Regardless of guardianship status, one of the most consistent findings about choice and self-determination for people with an intellectual disability is that the degree of choice and self-determination is strongly related to the degree of intellectual disability. Those with more severe intellectual disability or less well-developed adaptive behaviour exercise less choice and control in their lives (Stancliffe, 2001; Stancliffe, Abery & Smith, 2000). There are several reasons for this: • more severe intellectual disability is often associated with more limited decision-making abilities, such that people need more help when making decisions • community and caregiver attitudes may unnecessarily restrict the choices and decisions available to the person simply because the person has a (more severe) disability • people who pursue activities independently are more likely to exercise personal control than those whose adaptive behaviour skills are such that they rely on others for assistance with participation. There is a complex interrelationship between the person’s skills and abilities and the array of choices and decisions available to them. Opportunities for empowering interventions that increase the person’s ability to exercise personal control arise from each of the three factors mentioned above: • limited decision-making abilities • community and caregiver attitudes • achieving independence in key adaptive skills. It is well established that there are effective ways to teach decisionmaking skills and self-determination competencies to people with a

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developmental disability (see, for example, Foxx et al., 1993 – see box 4.1; Wehmeyer, Agran & Hughes, 1998). Intervention to support greater self-determination should to be tailored to the individual. There is little point in trying to teach complicated, linguistically demanding decision-making methods to a person who is experiencing difficulty making and communicating the most basic choices. That person first needs to learn how to communicate preferences and to communicate acceptance and refusal – for example, to indicate ‘yes’ and ‘no’ (Brown, Gothelf, Guess & Lehr, 1998). Community and caregiver attitudes can result in restricted opportunities for choice by people with a developmental disability. One important response to this problem is to counteract it by providing many opportunities for choices and decisions, with support as required, so that community members and caregivers see how to involve the person in choices and decisions. The person with a disability should have as much involvement as possible in all decisions affecting them, even if they are unable to make the decision independently. For example, the person may not be able to manage money, but may have clear preferences about what their money should be spent on. Teaching key adaptive behaviour skills for independence can increase personal control. For example, a person who can use a telephone or public transport independently can contact family and friends when and how they choose. Someone without those skills must wait until a support person has the time and inclination to help. Teaching travel or telephone skills may enhance both adaptive behaviour and personal control. This issue is discussed further in Choice and adaptive behaviour on page 97. Table 4.1 lists a range of scales that may be used to determine the extent of choice provided to people with a disability.

Preference assessment for people without conventional means of communication Many people with disabilities make their own decisions and choices, but need help with implementation. For example, Paul wants to buy himself a DVD player but, because of his physical disability, needs help to travel to the store, to bring the DVD player home, and to set it up.

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TABLE 4.1 PUBLISHED SCALES ASSESSING CHOICE AVAILABLE TO PEOPLE WITH AN INTELLECTUAL DISABILITY (An adapted and extended version of table 1 in Stancliffe, 2001) Scale

Authors

Brief description

Life choices survey

Kishi et al., 1988

Resident choice assessment scale

Kearney, Durand & Mindell , 1995

Quality of life questionnaire – empowerment factor

Schalock & Keith, 1993

Choice questionnaire

Stancliffe & Parmenter, 1999

Choice assessment scale

Sturmey, Matson & Lott, 2003

Resident choice scale

Hatton et al., 2004

11-item scale; has been used as a self-report and a proxy-report scale 25-item scale completed by proxies (direct care staff) about adults 10-item scale about choices and control over own life; can be used as a self-report scale or by two proxies 26-item scale dealing with a variety of choices; can be used as a self-report scale or by a proxy checklist that identifies potential reinforcers for people with severe to profound intellectual disability 26-item scale, with 8 subscales, designed to assess service practices for promoting resident choice by people with an intellectual disability living in supported accommodation services

However, some people with a disability have such marked communication difficulties and/or cognitive impairments that they cannot communicate their choices and preferences in ways that others can understand easily. Communicative competence and self-determination are closely related (Brown et al., 1998), and enhancing communication skills can facilitate choice and self-determination. Chapters 6 and 7 address communication issues in detail. The next section of this chapter focuses on issues of how caregivers can recognise and honour the preferences of people with significant communication impairment. Preference assessment A basic form of choice involves expressing a preference between tangible alternatives (milk or orange juice?). Effective methods are available for directly assessing the individual preferences of people

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who cannot communicate their likes and dislikes by conventional means (see, for example, Parsons, McCarn & Reid, 1993; Stalker & Harris, 1998). These methods involve systematically and repeatedly presenting the person with obviously different alternatives (usually two at a time) by placing the actual physical objects in front of the person where they can reach for or look toward the preferred alternative (the action taken to denote preference depends on the person’s particular abilities). If the alternatives are not familiar to the person, they are given the chance to become familiar with each one (for example, by tasting a range of different drinks). After each selection the person is given (brief) access to the chosen alternative (for example, has a sip of the chosen drink). The caregiver records which alternative the person selects. After the person has had repeated opportunities to choose, a clear distinction usually emerges (for example, one alternative is chosen seven times out of ten). The alternative selected most often is taken to be the most preferred. Of course, the caregiver needs to carefully observe the person’s response when given access to the chosen alternative to check that the person actually likes that alternative (does the person consume the chosen drink with some indication of pleasure, or spit it out, or refuse to drink?) This systematic approach to assessing preferences has been shown to be more accurate than individual staff judgement of what the person likes. Although preference assessment is helpful, it is impracticable to use formal, structured preference assessment to evaluate every possible preference. For many day-to-day preferences, caregivers must make skilled judgements based on knowing the person well, and carefully observing and accurately interpreting the person’s responses and reactions. Whatever method you use to identify the person’s preferences, it is important not to become locked into certain alternatives because you believe that ‘I know what he likes’. Always anticipating the person’s likes and dislikes takes away choice. Preferences can and do change, and need to be reassessed regularly. There is also a need to continue to expose the person to a range of different options (including some new ones), so the person can make increasingly informed choices from a wider array of alternatives. Research using the preference assessment methods described clearly shows that all people with disabilities have individual

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preferences, and can express those preferences given appropriate opportunities. For example, Parsons, McCarn et al. (1993) showed that these procedures could be successfully incorporated into dayto-day service provision to offer increased choice. While valuable, preference assessment has several important limitations. It typically provides limited choice confined to tangible, here-and-now alternatives, and Parsons, McCarn et al. (1993) noted that it has not been widely incorporated into routine service provision. However, Parsons, Harper, Jensen & Reid (1997) have extended the procedures to incorporate photographs of choice alternatives. Likewise, tangible objects can be used in symbolic ways to offer choice (for example, car keys may be used to indicate going for a drive, or a fast food wrapper to indicate going to buy a hamburger). Responding to preferences The basic rule of thumb is that caregivers should honour the person’s preferences unless there is a very good reason not to do so. For example, Jane is drinking a cup of tea when a staff member offers to help her bring in her washing from the clothesline. Jane says ‘no’, and goes on drinking her tea. The staff member should accept this preference (as to when to bring in the clothes), and come back after Jane has finished her tea and again suggest bringing in the washing. Jane may not have the verbal skills to explain that she would like to finish her tea and bring in the washing later. On the other hand, there are a small number of activities that can reasonably be considered essential even if the person prefers not to do them; for example, when a person needs a blood test for important medical reasons. Even if the person prefers to avoid the blood test, it may be necessary to explain why the test is required and provide whatever comfort and reassurance is needed to help them through the procedure with as little stress as possible. Like others in the community, the person can be supported to cope with the procedure even though it is not enjoyed and they would probably prefer not to go through it.

Making more complex decisions People with a developmental disability are sometimes confronted with decisions that are too difficult for them to understand fully. How should such decisions be dealt with, and what role should the person play? Even if the person cannot understand all aspects of the decision,

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they will have clear preferences that must be taken into account in helping them to reach a decision. One example of a complex and difficult decision is moving out to a community residence. There may be no ‘perfect’ option – it may be a question of choosing the best of the available alternatives. Foxx et al. (1993) evaluated a highly effective structured approach for helping people: • to identify their own unique preferences regarding community living • to determine which of these issues were most important to them • to visit various community-living services to find out which of their preferences were met (see box 4.1 for more details). Using this kind of information, a caregiver can help the person make a complex decision the outcome of which is most likely to be what the person really wants. Van Hooren et al. (2002) provide a thoughtful discussion of a number of approaches to assisted decision-making in the context of decisions about obesity and Prader-Willi syndrome, a genetic condition whose symptoms include difficulty in controlling appetite. Van Hooren et al. point out that decision-making need not only be seen as totally autonomous or completely paternalistic (that is, having the decision made by someone else), and that assisted decision-making can be a more appropriate and empowering approach. These ideas can be applied to a wide range of issues where the person’s understanding is such that assisted decision-making is required. The impact of service systems and organisations on choice and decision-making Formal disability services such as accommodation support, employment and day programs have an impact on the self-determination experienced by the people with disabilities who use them. For example, people who live in group homes rarely have control over selecting their living companions. At best they can accept or reject an offer to live in an existing group home with its current residents. In addition, having to cater to the needs of the group means that individual choices and preferences may be overlooked (Van Dam & Cameron-McGill, 1995). Research has found that people who live in group homes have less choice than people in more individualised forms of community-based accommodation support (such as semiindependent living and supported living), including less choice of

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living companions (Emerson et al., 2001; Howe, Horner & Newton, 1998; Stancliffe, 2005; Stancliffe & Keane, 2000). The rules and restrictions imposed by the service-provider organisation or by government regulation can also limit freedom and self-determination. For example, in the case of some types of community housing for people with a developmental disability in the US (licensed under the Intermediate Care Facility for Persons with Mental Retardation program) government regulations require that no resident is ever left ‘home alone’. While this makes sense for many residents, there are others who could cope safely with periods of being unsupervised at home. The fact that this is expressly forbidden by regulation means that they do not have the choice of staying home without staff rather than going on a group outing they do not wish to attend. Residents in this type of housing have been found to have less choice and control over their lives than those in more flexible housing arrangements with fewer restrictive regulations (Stancliffe, Abery & Smith, 2000). The regulation about not being home alone is a sensible protection for vulnerable service users, but applying this requirement without regard for each person’s abilities and circumstances means that it becomes an unnecessary restriction for some, resulting in less self-determination. This particular restriction illustrates one of the most basic issues regarding self-determination: the tension between safety and risk, between protection and increased freedom. Protection from serious risk is obviously important, but it usually comes at the price of some loss of freedom and self-determination. For example, as a community, we give up the freedom to drive at whatever speed we choose in order to protect all citizens from the perils of excessive speed and dangerous driving. Likewise, people with a developmental disability may, for example, give up significant control over their money to trusted others to ensure that they are not exploited financially. The issue of choice and risk is further explored later in this chapter. Nankervis et al. (2001) provided a number of examples of how organisational policies and procedures prevent staff from supporting resident autonomy. For instance, a requirement that all expenditure of client money be backed up with a receipt meant that clients could not be given even a small amount of cash to spend however and wherever they wanted.

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Major life decisions Research has shown repeatedly that people with a developmental disability have very little control over major service-related decisions such as where they will live, with whom they will live, the hiring and firing of support staff, and where and with whom they will work or attend day programs. They do have more control over more routine choices such as what to eat or what to wear (Emerson & Hatton, 1996; Parmenter et al., 1991; Stancliffe & Wehmeyer, 1995; Wehmeyer & Metzler, 1995). These findings suggest there is still a long way to go in achieving the degree of consumer choice envisaged in current legislation, regulations and disability-service funding contracts. As mentioned elsewhere in this chapter (see box 4.1), Foxx et al. (1993) provide an effective framework for involving consumers fully in major service-related decisions that directly affect them. Unfortunately, Foxx et al.’s participants were not given the opportunity to actually make a decision about which community residence they would move to from the institution. In fact, the institution placed people in community settings as vacancies arose with little apparent regard for their individual choices or preferences. This regrettable situation reinforces the negative impact that service systems can have on people’s control over their own lives, and shows that both decision-making skills and environmental opportunities to exercise real choice are vital if people are to be more self-determining. Choice and different types of accommodation support services Overall, there is consistent evidence showing clear differences between the levels of self-determination experienced by residents in different types of accommodation support services. These findings continue to hold true even after taking into account differences in the characteristics of residents from different service types (for example, on average, people living semi-independently have betterdeveloped skills than group-home residents) (Stancliffe, 2005). The evidence base about the relationship between residence type and choice/self-determination available to residents indicates that: • residents of institutions experience less choice than people living in community settings (Stancliffe & Abery, 1997) • residents in hostels (larger, non-domestic community residences

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typically with ten to 25 residents, sometimes more) enjoy less self-determination that people living in domestic-scale ordinary housing (such as group homes) (Emerson & Hatton, 1996) • people living in very small (one to three people), individualised and flexible residences, with part-time or drop-in staffing, or in supported living, experience more choice and self-determination than those in group homes with 24-hour staff supervision (Burchard, Hasazi, Gordon & Yoe, 1991; Howe et al., 1998; Stancliffe, 1997, 2005; Stancliffe, Abery & Smith, 2000; Stancliffe & Keane, 2000). These findings have clear implications for the nature of residential services if greater self-determination is to be achieved. However, supporting client choice and self-determination cannot be put on hold until the service system is restructured. The next two sections address what lessons may be learnt from this research that can be used immediately to support greater self-determination. Choice and adaptive behaviour Individual differences in intellectual functioning and adaptive behaviour are known to be related very strongly to choice and selfdetermination. Those with better-developed adaptive skills are consistently found to exercise greater choice and self-determination (Heller, Miller & Factor, 1999; Stancliffe, 1997; Stancliffe, Abery & Smith, 2000; Stancliffe & Wehmeyer, 1995). Although it is difficult to bring about large changes in adaptive behaviour, it is possible to teach independence in certain key skills which also directly add to self-determination. Teaching someone how to get a drink independently means that they can have the type of drink they want, when they want it, without having to wait for someone to get it for them. Staff presence One crucial difference between group homes (typically with 24-hour staffing) and semi-independent living (with drop-in staffing) is the much lower staff presence in semi-independent settings. Stancliffe (2005) has proposed that frequent periods without staff mean that these people undertake activities independently and make choices for themselves because no staff are available to do it for them (also see Stancliffe, Abery & Smith, 2000; Stancliffe & Keane, 2000).

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This logic can also be applied to people with lower support needs who currently live in fully-staffed settings. Provided they learn to do so safely, particular people could be given opportunities to stay home alone (while other residents and staff are out) or move about in the community independently. Such opportunities seem likely to enhance both independence and self-determination. However, it is important to note that this proposition has been inferred from comparisons of different models of community living (for example, semi-independent living versus group homes), and has not been tested directly in controlled research studies.

Assessing and managing the risks associated with making choices Taking risks is an important part of a ‘normal’ life. Trial and error – learning from the consequences of our actions – is an important form of learning. Exposure to risk is a part of everyday life, and it is only through exercising choice and judgement in such situations that people develop and mature. Unfortunately, people with disabilities are sometimes denied the opportunity to take risks as staff, families, friends or organisations think they need to protect them from any risk at all. Overprotection prevents the person from experiencing the risk-taking that is part of everyday life and that is necessary for personal growth and development (Perske, 1972). Accordingly, carer attitudes and risk tolerance are key factors in everyday choice, decision-making and potential learning opportunities. Research has shown that people with intellectual disabilities whose carers were more risk tolerant achieved more of their potential in everyday living skills (Heyman & Huckle, 1993). Often, people who depend on the support of others are not given the opportunity to take risks, and so are not exposed to valuable learning opportunities. This is especially the case for those supported through formal support services where risk aversion by the organisation can override the opportunity for people to engage in day-today risks that are otherwise a part of everyday life (Sellars, 2002). For example, outings involving crowds, road crossing or water safety may be avoided or curtailed because of fear of risk and litigation. Stancliffe, Abery, and Smith reported that: One participant with quite limited money skills was ‘protected’ from

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financial exploitation by never being allowed to carry any money. This practice eliminated any potential risk but also resulted in the loss of freedom to choose to make minor purchases independently. (2000, p. 447)

Ironically, this same study found that the amount of money available to the person for discretionary spending was directly related to their level of control over their lives, with those having access to less money being less self-determined. While learning and self-determination are enhanced by opportunities to deal with reasonable risks, protection and freedom from abuse and neglect are also important principles for services for people with disabilities. Risk management is an approach that seeks to minimise harm and maximise benefits in striking a balance between appropriate protection and reasonable risk (Sellars, 2002). What is risk? The Victorian Risk Framework (Department of Human Services, 1999) defines risk as ‘the relationship between the degree of harm and the probability of the believed harm occurring’ (p. 3). As previously discussed, we all face risks in our everyday life (often without even being conscious of it), and make judgements based on weighing up the risk versus the potential benefits of our actions. It should be recognised, therefore, that assessment of risk can be subjective, and that when assessing risk for another person it is necessary to closely examine the actual risk. The Victorian Risk Framework suggests that there are four dimensions of risk that need to be considered to make a judgement of the level of real risk to a person. These are: • severity of the anticipated harm, referring to the type and degree of harm that has been, or is likely to be, experienced. The factors relating to vulnerability and patterns of past harm are taken into account to estimate the severity of any future harm • vulnerability to harm. This involves examining factors relating to the person’s age, aspects of their development or functioning and the opportunity for harm or for protection • likelihood of the anticipated harm occurring, continuing, or recurring • safety for the person. This refers to the factors that decrease the probability of harm, including positive relationships, skills and personality.

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Box 4.2 provides an example of how these dimensions of risk may be considered for Frank in the context of learning a useful household skill.

BOX 4.2 • FRANK’S STORY: RISKY BEHAVIOUR? The staff who provide support to Frank in his group home don’t involve him when they are doing the washing and they complete this task for him. They are concerned that it would be too risky to let Frank do this as he may eat washing powder and become ill. As a result of this perceived risk Frank is not involved in doing the washing and is missing out on the chance to learn to do this for himself. A supervisor discusses this with the staff and learns of their fears for Frank. It is established that while staff believe there is a risk associated with Frank doing his washing there is no history of Frank ever having eaten washing powder or other potentially dangerous substances before. The supervisor also rings the poisons helpline and is told that the amount of detergent that must be consumed before a person of his weight and height becomes ill is more than the amount typically used when doing a load of washing. In discussion with staff it is agreed that the severity and likelihood of the ‘risk’ associated with Frank doing his own washing is minimal as he has no past history of eating washing powder and if he did so the effects may be unpleasant (horrible taste and nausea) but there would be no long-term damage. It is also agreed that any safety concerns are outweighed by the benefits to Frank in learning how to do his own washing. As a result, the staff now involve Frank in doing the washing.

It must also be acknowledged that people with disabilities may be more vulnerable to risk as a result of their impairment (for example, a person with cognitive impairment may be more vulnerable to exploitation). Real risks may arise from a number of sources including: • people associated with the person (such as carers) • the person’s behaviours (such as substance abuse or refusal of services) • medical conditions (such as diabetes). Where options or choices carry some level of real and significant risk, it must be carefully explored and managed. A person-centred process for risk assessment and management Kinsella (2000) provides a process for the assessment of everyday risk and the development of strategies to help people with disabilities live lives where safety is balanced against personal happiness.

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This process involves the following steps: 1 Get clarity about what the risk is

The actual risk associated with a choice or action is identified using clear, specific and unambiguous language. For example, the statement ‘we are worried that Michael will be hit by a car if he crosses the road by himself’ is more likely to be understood by everyone than ‘we are worried that Michael will engage in unsafe behaviour’. Make sure everyone agrees that this is the issue. 2 Determine the responsibility

It is important to make sure the issue under consideration is one for which you have responsibility. • Is it one of your (or your service’s) core responsibilities for which you have an obligation? If it is the responsibility of your agency are there clear procedures and policies for addressing the issue? • Is it an issue where you personally have the main responsibility and where you can use your creativity and judgement? • Is it an issue for which you have shared responsibility with others (for example the person, their family, other services)? For example, if a person in supported employment is making choices that risk his currently stable living arrangements, this issue would not be the responsibility of the supported employment agency. However, staff from the agency may be involved in identifying strategies to reduce and manage the risk and may take some responsibility for implementing some of them, such as making sure the person is given time off work to attend appointments. 3 Analyse the likelihood and severity of possible outcomes

Predictions of the likelihood and severity of possible adverse outcomes can be made after considering: • the history of the person (have they done this before and is it likely to happen again?) • changes in circumstances (have they learnt new skills or gained knowledge from previous experiences?) • what is known about the risk (such as available information and research results).

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Looking at history and available evidence also enables us to predict vulnerability and safety issues. The analysis must be based on common sense and evidence, not conjecture or what you imagine could happen. If an evidence-based approach is not taken there is the possibility that people will be put unnecessarily at risk, or prevented from developing autonomy by avoidance of anything with the slightest element of risk. 4 Assess the consequences of the choice or action

The impact of the risks associated with the choice or action on the person, the public or the organisation must be considered in terms of potential injury or damage to any person’s property, goods or status. You need to be clear and precise and make sure that predictions of consequence are based on evidence from the past, on common sense or on likelihood. For instance, it is foreseeable that a person’s decision to not shower or change their clothes regularly is likely to lead to people avoiding them, resulting in social isolation and rejection. Thus the person is at risk of experiencing loneliness and depression as a result of their decision. 5 Assess potential opportunity lost

Carefully consider what will not happen, or may not happen, if the person is restricted from taking this risk. For example, allowing someone to attend a concert by a visiting performer may be worth the risk because the concert is a once-in-a-lifetime opportunity, and because the risk can be reasonably managed. 6 Consider strategies to reduce and manage risk

After analysing the likelihood and severity of possible adverse outcomes of the behaviour or issue (see step 3 above), consider ways to reduce the likelihood of negative outcomes from everyday choices and risk-taking. Strategies may necessitate: • adaptations to the immediate environment • changes in what usually happens • support to the person with a disability • training for staff. 7 Consider the balance of safety and happiness

Evaluate the strategies identified in step 6 by looking at their likely impact in terms of the safety of the person and others, and the

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happiness of the person. Strategies that promote happiness and safety should be adopted, while those that are high on the happiness scale but low in safety should only be used where it is agreed that the risk is worth taking and there is no serious danger. Strategies that are low on the happiness scale but high in safety should only be adopted if there is a significant danger to the person and/or others. Strategies that are low on both measures should never be used (Subscriber Network, n.d.). 8 Keep records

Given that risk management involves making judgements about potentially harmful activities, it is essential that accurate records are kept about the decision-making process. These records should cover: • the nature of the behaviour or issue and data on its occurrence • the outcomes of meetings and consultations, including who was consulted and who agreed to take action • evidence of ongoing monitoring of the behaviour or issue. The impact of staff occupational health and safety issues We have seen that prevailing values in the disability field, such as recognition of the dignity of risk, mean that the balance between protection and risk should be tailored to each person’s abilities and circumstances. That is, the approach is to manage risk, not eliminate it. Likewise, we should avoid imposing on all service users restrictions that are only relevant to the safety of the most at-risk people. This view is quite different from the prevailing approach to occupational health and safety, where the first step is to eliminate the risk if possible. Unfortunately, procedures intended to eliminate risk from the working life of staff can have serious effects on the lifestyle and freedom of choice of clients, which may apply to their entire life. Occupational health and safety is of legitimate concern, but so too is the freedom of people with a disability. Much work needs to be done to find better ways of responding to each of these issues – dignity of risk and duty of care – without sacrificing one or the other. At the moment there is a clash of values, with occupational health and safety priorities from outside the human services field being implemented with seemingly little regard for the impact on clients. Sykes (in press) has reported a real-life example where a service

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refused to provide support to a man with dementia to allow him to continue to live in his home because of the perceived occupational health and safety risk associated with him being a smoker.

Conclusion It is well established that people with disabilities, particularly those in formal disability support settings, often exercise low levels of personal control. Such a lack of freedom and choice is a problem in its own right, and also means that these people may miss out on valuable life experiences. We also know that the relationship between service users and carers is an important vehicle for the promotion of autonomy and self-determination. Workers who support people with disabilities should see every daily situation as an opportunity to facilitate choice, empowerment and the development of self-determination for service users. Where a person’s preferences are not explicit, workers must use effective methods for assessing them, as well as consistently honouring those preferences in their daily practice. The role of organisations in facilitating or limiting choice also needs to be recognised. Support workers and their supervisors may, at times, need to balance complex considerations between choice and risk, duty of care, and occupational health and safety. Chapter 15 presents some of the skills and knowledge that will help workers and organisations to achieve such a balance, such as supporting people with limited communication, managing conflict and providing leadership.

Learning activities 1

Using the headings below, list the choices and decisions you made when you were a teenager (aged around 13 or 14) and the choices and decisions you make now, as an adult. • home decisions (eg what and when you eat, who you live with, household routines) • employment/daytime decisions (eg where and when you work or are involved in daytime activities, who you work or engage in activities with) • personal appearance (eg clothes, hairstyle)

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• finances (eg how much and what you spend your money on) • leisure/relationships (eg who you have as a partner, how you spend your leisure time and who with) Think about how the level and types of choices and decisions you made as a teenager have changed as you have become an adult. (a) What has changed? (b) What was it about you that resulted in these changes? (c) What was it about others (such as family members or friends) that influenced these changes? 2

Think of some time in your life when you have taken a risk that has paid off for you. (a) What were you risking? (b) What were the chances of a negative outcome (none, unlikely, fairly likely, highly likely)? (c) What were the positive outcomes for you? (d) Did the positive outcomes outweigh the risk you took? (e) What did you learn?

3

Think of some time in your life when you have taken a risk that resulted in a negative outcome for you. (a) What were you risking? (b) What were the chances of a negative outcome (none, unlikely, fairly likely, highly likely)? (c) What were the negative outcomes? (d) Were there any positive outcomes? (e) Did the positive outcomes outweigh the risk that you took? (f) What did you learn from this experience?

4

Conduct a personal risk assessment for yourself. Think of something that you would like to do that involves some risk for you (such as skydiving, telling someone that you are attracted to them, changing jobs, travelling overseas). (a) What is it that you would you like to do?

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(b) Why do you want to do this? (c) Based on past experience or common sense is there anything in this that could be dangerous or have a negative outcome for you? (d) What could you do to make this safer or to reduce any potential negative outcomes? (e) Having thought about this, will you now ahead and do it? 5

Rate your own practices in promoting self-determination by the people with a disability you support by reflecting on the following checklist (from DiLeo 1996): • You actively listen to the person with a disability. • You support the provision of flexible services. • You provide people with disabilities with a range of options. • You keep the person with a disability fully informed. • You assist the person to speak for themselves, and you don’t speak for them. • You frequently recheck the person’s satisfaction with services. • You (or your organisation) provide flexible funding of services. • You respectfully question the assumptions of others about what the person wants or needs. • You provide opportunities for the person to host their own planning meeting. • The person is able to direct where resources will be spent – on what or whom. • The person can change their mind about a personal goal. • You support the person to choose who they want to advocate for them.

6

In activity 1, you listed the choices and decisions you make in your life now, as an adult, in a number of areas. Now think of a person with a disability for whom you provide support and write down the choices they make in those areas. Now compare the lists you have written.

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(a) What are the similarities? (b) What are the differences? (c) Are there more differences than similarities? (d) What could you do to support the person with a disability in making more choices in their day-to-day life?

References Brown, F., Gothelf, C. R., Guess, D. & Lehr, D. H. (1998). Self-determination for individuals with the most severe disabilities: Moving beyond chimera. Journal of the Association for Persons with Severe Handicaps, 23, 17–26. Burchard, S. N., Hasazi, J. E., Gordon, L. R. & Yoe, J. (1991). An examination of lifestyle and adjustment in three community residential alternatives. Research in Developmental Disabilities, 12, 127–42. Carney, T. & Tait, D. (1997). The adult guardianship experiment: Tribunals and popular justice. Sydney: Federation Press. Department of Human Services (1999). Victorian risk framework: A guided professional judgement approach to risk assessment in child protection. Melbourne: DHS. DiLeo, D. (1996). It’s my meeting: A family/consumer pocket guide to participating in personcentered planning. Florida: Training Resource Network. Emerson, E. & Hatton, C. (1996). Deinstitutionalization in the UK and Ireland: Outcomes for service users. Journal of Intellectual & Developmental Disability, 27, 1, 17–37. Emerson, E., Robertson, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A. et al. (2001). Quality and costs of supported living residences and group homes in the United Kingdom. American Journal on Mental Retardation, 106, 5, 401–15. Foxx, R. M., Faw, G. D., Taylor, S., Davis, P. K. & Fulia, R. (1993). ‘Would I be able to...?’ Teaching clients to assess the availability of their community living life style preferences. American Journal on Mental Retardation, 98, 235–48. Goode, D. A. (1994). The national quality of life for persons with disabilities project: A QOL agenda for the United States. In D. A. Goode, Quality of life for persons with disabilities: International perspectives and issues. Cambridge, MA: Brookline Books. Guardianship & Administration Board Act 1986. Retrieved June 4, 2005 from . Hatton, C., Emerson, E., Robertson, J., Gregory, N., Kessissoglou, S. & Walsh, P. N. (2004). The resident choice scale: A measure to assess opportunities for self-determination in residential settings. Journal of Intellectual Disability Research, 48, 103–13. Heller, T., Miller, A. B. & Factor, A. (1999). Autonomy in residential facilities and community functioning of adults with mental retardation. Mental Retardation, 37, 449–57. Heyman, B. & Huckle, S. (1993). Not worth the risk? Attitudes of adults with learning difficulties and their formal and informal carers to the hazards of everyday life. Social Science Medicine, 37, 1557–64. Howe, J., Horner, R. H. & Newton, J. S. (1998). Comparison of supported living and traditional residential services in the state of Oregon. Mental Retardation, 36, 1, 1–11. Jenkinson, J., Copeland, C., Drivas, V., Scoon, H. & Yap, M. L. (1992). Decision making by community residents with an intellectual disability. Australia and New Zealand Journal of Developmental Disability, 18, 1–8. Jones, M. & Basser-Marks, L. (2000). Valuing people through law: Whatever happened to Marion? In M. Jones & L. Basser-Marks (Eds), Explorations on law and disability in Australia (pp. 47–180). Sydney: Federation Press.

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Kearney, C. A., Durand, V. M. & Mindell, J. A. (1995). Choice assessment in residential settings. Journal of Developmental & Physical Disabilities, 7, 203–13. Kennedy, M. J. (2000). Opening the doors of opportunity for the year 2000 and beyond. Mental Retardation, 38, 373–4. Kinsella, P. (2000). Person-centred risk assessment. Retrieved October 20, 2003 from . Kishi, G., Teelucksingh, B., Zollers, N., Park-Lee, S. & Meyer, L. (1988). Daily decisionmaking in community residences: A social comparison of adults with and without mental retardation. American Journal on Mental Retardation, 92, 430–5. Lester, T. (2000). Financial management and substitute decision making: Balancing dollars and sense. In A. Shaddock, M. Bond, I. Bowen & K. Hales, Intellectual disability and the law: Contemporary Australian issues (pp. 89–98). Callaghan, NSW: Australian Society for the Study of Intellectual Disability. Nankervis, K. L., Hamilton, D. & Neville, C. (2001). Power sharing and direct care staff interaction with residents of disability accommodation services. Melbourne: Department of Human Services. O’Brien, J. & O’Brien, C. L. (1997). A tune beyond us, yet ourselves: Power sharing between people with substantial disabilities and their assistants. In P. O’Brien & R. Murray, Human services: Towards partnership and support (pp. 203–14). Sydney: Federation Press. O’Sullivan, J. L. (1999). Adult guardianship and alternatives. In R. D. Dinerstein, S. S. Heer & J. L. O’Sullivan (Eds), A guide to consent (pp. 7–38). Washington, DC: AAMR. Parmenter, T. R., Briggs, L. & Sullivan, R. (1991). Quality of life: Intellectual disabilities and community living. Evaluation Journal of Australia, 3, 12–25. Parsons, M. B., Harper, V. N., Jensen, J. M. & Reid, D. H. (1997). Assisting older adults with severe disabilities in expressing leisure preferences: A protocol for determining choice-making skills. Research in Developmental Disabilities, 18, 113–26. Parsons, M. B., McCarn, J. E. & Reid, D. H. (1993). Evaluating and increasing mealrelated choices throughout a service setting for people with severe disabilities. Journal of the Association for Persons with Severe Handicaps, 18, 253–60. Perske, R. (1972). The dignity of risk. In W. Wolfensberger, Normalization: The principle of normalization in human services (pp. 195–200). Toronto: National Institute on Mental Retardation. Peter, D. (2000). Dynamics of discourse: A case study illuminating power relations in mental retardation. Mental Retardation, 38, 354–62. Schalock, R. L & Keith, K. D. (1993). Quality of life questionnaire. Worthington, OH: IDS Publishing. Sellars, C. (2002). Risk assessment in people with learning disabilities. Blackwell: Oxford. Stalker, K. & Harris, P. (1998). The exercise of choice by adults with intellectual disabilities: A literature review. Journal of Applied Research in Intellectual Disabilities, 11, 60–76. Stancliffe, R. J. (1997). Community living-unit size, staff presence and residents’ choicemaking. Mental Retardation, 35, 1, 1–9. Stancliffe, R. J. (2001). Living with support in the community: Predictors of choice and self-determination. Mental Retardation & Developmental Disabilities Research Reviews, 7, 91–8. Stancliffe, R. J. (2005). Semi-independent living and group homes in Australia. In R. J. Stancliffe & K. C. Lakin (Eds), Costs and outcomes of community services for people with intellectual disabilities (pp. 129–50). Baltimore: Paul H. Brookes. Stancliffe, R. J. & Abery, B. H. (1997). Longitudinal study of deinstitutionalization and the exercise of choice. Mental Retardation, 35, 3, 159–69. Stancliffe, R. J., Abery, B. H., Springborg, H. & Elkin, S. (2000). Substitute decision-making and personal control: Implications for self-determination. Mental Retardation, 38, 407–21. Stancliffe, R. J., Abery B. H. & Smith, J. (2000). Personal control and the ecology of com-

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munity living settings: Beyond living-unit size and type. American Journal on Mental Retardation, 105, 431–54. Stancliffe, R. J. & Keane, S. (2000). Outcomes and costs of community living: A matched comparison of group homes and semi-independent living. Journal of Intellectual & Developmental Disability, 25, 4, 281–305. Stancliffe, R. J. & Parmenter, T. R. (1999). The choice questionnaire: A scale to assess choices exercised by adults with intellectual disability. Journal of Intellectual & Developmental Disability, 24, 107–32. Stancliffe, R. J. & Wehmeyer, M. L. (1995). Variability in the availability of choice to adults with mental retardation. Journal of Vocational Rehabilitation, 5, 319–28. Sturmey, P., Matson, J. L. & Lott, J. D. (2003). The internal consistency and factor structure of the Choice Assessment Scale. Research in Developmental Disabilities, 24, 317–22. Subscriber Network (n.d.). Individual and person-centred planning. Retrieved October 15, 2003 from . Sykes, D. (in press). Risk and rights: The need to redress the balance. Journal of Intellectual and Developmental Disability. Treece, A., Gregory, S., Ayres, B. & Mendis, K. (1999). ‘I always do what they tell me to do’: Choice-making opportunities in the lives of two older persons with severe learning difficulties living in the community setting. Disability & Society, 14, 791–804. Van Dam, T. & Cameron-McGill, F. (1995). Beyond group homes. Interaction, 8, 3, 7–13. van Hooren, R. H., Widdershoven, G. A. M., van den Borne, H. W. & Curfs, L. M. G. (2002). Autonomy and intellectual disability: The case of prevention of obesity in Prader-Willi syndrome. Journal of Intellectual Disability Research, 46, 560–8. Wehmeyer, M. L. (2004). Beyond self-determination: Causal agency theory. Journal of Developmental and Physical Disabilities 16, 337–59. Wehmeyer, M. L. (1999). A functional model of self-determination: Describing development and implementing instruction. Focus on Autism and Other Developmental Disabilities, 14, 53–61. Wehmeyer, M. L., Agran, M. & Hughes, C. (1998). Teaching self-determination to students with disabilities: Basic skills for successful transition. Baltimore: Paul H. Brookes. Wehmeyer, M. L. & Bolding, N. (1999). Self-determination across living and working environments: A matched samples study of adults with mental retardation. Mental Retardation, 37, 353–63. Wehmeyer, M. L. & Metzler, C. A. (1995). How self-determined are people with mental retardation? The national consumer survey. Mental Retardation, 33, 2, 111–19.

5

Planning for support Karen Nankervis

Learning objectives After reading this chapter and completing the activities you should be able to: • understand the history and context of individual planning • understand the principles of effective individual service plans • understand the relationship between person-centred plans and individual service plans • develop, implement, monitor and evaluate plans • recognise the importance of differentiating between planning and outcomes.

Introduction Planning has been acknowledged as an important part of service delivery to people with disabilities since the introduction in the 1960s of individual education plans for students with disabilities attending schools in the US (Ashman & Elkins, 2005). Individual plans were intended to ensure that human services are responsive to, and driven by, the needs and aspirations of the people who use them. Without individual planning processes the needs of the organisation can be the determinants of the experiences of disability support service users, and the voice of the person will not be the driving force in how support is provided.

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Individual planning has an important role where supports and assistance are required by people with significant levels of disability and/or communication difficulties, and where their ability to plan for themselves or articulate their needs and preferences is limited. Where people with disabilities are able to advocate for themselves and negotiate their own supports, plans are unlikely to be needed. In this chapter the term individual plan will be used generically to include both: • person-centred planning (plans that focus on the person’s life and their vision for the future), and •

individual service planning (plans that focus on person-directed service delivery and supports).

The intent, concepts and principles are much the same for both types of plans. However, while both fit under the umbrella of individual planning, an individual service plan may not necessarily be person-centred, while a person-centred plan will, by its nature, be individualised. This chapter discusses the principles that underpin good quality individual planning and provides guidelines for writing and implementing effective individual service plans. The use of person-centred planning is discussed, as well as the issues of planning versus action. But first, it is necessary to look at the relationship between personcentred planning and individual service planning.

Person-centred plans and individual service plans Person-centred planning has been proposed as a response to the perception that traditional planning processes focus on the deficits of a person and their needs. Person-centred planning aims to shift the planning focus to one of ‘a passionate concern to support people with developmental disabilities in discovering and contributing their gifts’ (O’Brien & O’Brien, 2002, p. 24). Person-centred planning takes place through an alliance between the person with a disability and their personal networks where there is a commitment to taking action to create a lifestyle that helps the person contribute to and participate in the community. Individual service planning commonly focuses on identifying and planning skillbuilding programs and/or coordinating service delivery to people with disabilities (Hudson & Cummins, 1991).

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FIGURE 5.1 THE RELATIONSHIP BETWEEN PERSON-CENTRED PLANNING AND INDIVIDUAL SERVICE PLANS

Person-centred plan

Individual service plan

• Focus is on the life of the person and their vision for the future • Contains information about: — dreams and visions — hopes and nightmares — actions — who is involved in their life — who and what is important to them — likes/dislikes — strengths and unique gifts • Prepared by: — focus person — facilitator — family — friends — others • Actions as a result of the plan are taken by all stakeholders in the person’s personal network

• Focus is on person-directed service delivery and supports • Driven by person-centred plan • Contains information about — goals and objectives — strategies — responsibilities • Developed by service provider in consultation with focus person, other service providers, family, advocates • Actions as a result of the plan are taken by the staff of the support organisation

Person-directed action

Critical outcomes for the person • Community presence • Choice • Developing competence • Respect • Participation

The term individual service plan is used here to encompass a variety of names and formats of plans used to coordinate service delivery and supports to people with disabilities. These names and formats include general service plan, individual program plan, individualised service plan, individualised treatment plan, and individualised support plan (Hudson & Cummins, 1991; Thompson et al., 2002).

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Regardless of the name, the primary purpose of individual service planning is to ensure that disability support services fit the needs and aspirations of the service user rather than trying to make the service user fit into the service or organisation. Individual service plans identify the supports needed to help the person with a disability participate in their community, assume valued social roles and experience greater satisfaction and fulfilment (Thompson et al., 2002). There is a complementary relationship between person-centred planning and individual service planning, in that the person-centred plan establishes the context and priorities of formal support providers and therefore the focus of the individual support plan. When service providers work collaboratively with the individual’s personal network they become partners in the actions taken to help the person achieve a better lifestyle. Figure 5.1 illustrates this relationship. An example of the person-centered planning process appears in box 5.1. As you read, reflect on how both the person-centered plan and the individual plan lead to important outcomes.

BOX 5.1 • THE RELATIONSHIP BETWEEN PERSONCENTRED PLANS AND INDIVIDUAL SERVICE PLANS Wee’s person-centred plan was developed over time through the interaction between people involved in his life. These included his parents, the key worker from the day centre he attends, respite accommodation staff and his friend Kowlin from a community advocacy group who acted as the facilitator. Everybody met regularly at Wee’s house over coffee and cake. When the group first started getting together they talked with Wee about what he liked and didn’t like, what his interests were and what was important to him. They also discussed how Wee communicates with people and how he lets them know what is important to him. To make sure that everybody understood what was discussed they drew pictures on pieces of butcher’s paper. They ended up with some drawings that depicted Wee’s life. Now that everybody felt they had a good understanding of Wee, the group moved on to talk about his future. They considered what his future looked like, pictured his dreams and developed a shared vision. Again, the group drew this so that there was a common understanding. In subsequent meetings they talked about who and what could help Wee strive toward this future, and who and what could hinder him. They identified who they needed to recruit to help move toward Wee’s future, and the next steps for immediate action.

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Once the next steps for action were identified each member of the group made a commitment about the actions they could take. For instance, Wee’s parents said that they would arrange an appointment with a speech therapist, and also take him to the football more often because this was something he loved to do. Nicki, the key worker from the day centre, said that the centre will help Wee develop the vocational skills he will need to gain future employment in the hospitality industry (employment in hospitality was part of his vision for the future). Nicki also promised that she would find out the contact details for a recreation support group and pass this information on to Wee’s parents. This information was recorded on an action plan that specified what was going to be done and who was going to do it. The action plan was given to everyone. The group continued to meet once a fortnight to talk about progress on the actions they were taking. In the first meeting after they developed their plan for the future, Nicki reported that their personcentred plan had been used as the basis for an individual service plan that specified to her organisation and its staff how they should support Wee, and the competencies they will help him develop. She also reported that Wee and his parents had worked with the staff to develop the individual service plan. With Wee’s permission, she gave everyone a copy. This group of people continues to meet. Sometimes someone else is invited to become involved in Wee’s life and become part of the group; at other times a person is replaced, like the time Neville (the worker from the respite accommodation service) left for another job and was replaced by Chris. Everyone in the group has made a commitment to continue to meet, take action, review progress and, when necessary, revise the vision for Wee’s future. Wee’s friend Kowlin acts as the champion in this process, ensuring that people remain committed and providing support for the whole planning process.

Before moving on to further discussion of individual service planning and person-centred planning, it will be helpful to consider the principles and values that apply to individual planning and the characteristics that are fundamental to the preparation of quality individual plans.

The development of quality individual plans Individual planning has been used for some time as a mechanism for ensuring that supports focus on the person. There are a number of values and principles that must be held by those involved in planning for people with disabilities. Without these attitudes and principles, the approach to individual planning

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will not be in the best interests of the person who is the focus of the plan. These values, and the principles inherent in individual planning, appear in table 5.1. TABLE 5.1 VALUES AND PRINCIPLES FOR INDIVIDUAL PLANNING (From Meyer Children’s Rehabilitation Institute, 1985 and Smull & Sanderson, 2002) Essential values for individual planning

Principles for individual planning

• People with disabilities have a right to quality services and deserve the best efforts by those who support them. • People with disabilities are best supported by inclusion in the mainstream of life. • People with disabilities have status equal to that of any other citizen. • Each person is unique in their preferences, aspirations and needs. • Those supporting people with disabilities must be free from stereotyped notions of what people with disabilities are like and what they can and can’t do. • Regardless of degree of disability, all people can learn and grow. • Each person is of equal human value and is deserving of respect. • Expectations can challenge or limit people’s growth and opportunities.

• When we listen with skill and respect, we can learn what is important to each person regardless of severity of disability. • Planning is a continuous effort because what people want tomorrow may be different from what they want today. • Growth and learning occur naturally when people have the opportunities that they want, and that are in keeping with what is important in their life. • Many behaviours that we label as ‘non-compliance’, as ‘challenging’, or as ‘problem behaviours’, go away when what is important to the person is present. • Regardless of severity of disability, people are able to take positive control over their lives as we learn to listen and trust develops. • Building a network of relationships in the community can occur, although it may take some time.

You will find much in common between these values and principles and the material covered in chapters 2 and 3. A unifying standard across these values and principles is the fundamental right of people with a disability to be treated with dignity. The values, principles and practices displayed during the planning process contribute to the likelihood that the plan will be a significant factor in positive quality of life outcomes for people with disabilities. Regardless of the setting and the people involved, there are several phases in the individual planning process that do not change.

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The phases of individual planning, whether for person-centred plans or individual service plans, are: 1

Undertake assessment and information gathering to develop a comprehensive picture of the person.

2

Write the individual plan for a shared vision of the person’s future.

3

Implement the plan by taking action.

4

Monitor and evaluate the plan by reviewing, reflecting and learning.

The planning process is circular and interrelated, not linear. In other words, monitoring and evaluation may lead to further information gathering and modifications to the plan. Plans that are responsive and flexible involve continuous assessment and monitoring, and the revisiting of objectives and strategies. A visual representation of the process of individual planning is shown in figure 5.2. FIGURE 5.2 THE PHASES OF INDIVIDUAL PLANNING

Formulation of individual plan

Implementation of individual plan

Assessment of needs and aspirations

Monitoring and review of individual plan

The Office of the Public Advocate (1992) recommends that well written individual service plans should: • maintain a focus on whether individual needs and aspirations are being met • make a service accountable to the people they support • enable a systematic service delivery approach in a coordinated manner • organise services and supports around the needs and aspirations of the person rather than the needs of the organisation.

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Individual service plans also provide an opportunity for the person with a disability and their family to influence the nature and type of services they receive. In addition, by focusing on a person’s needs and aspirations individual service plans can be used to identify what staff should be doing, and the staff training needs that arise out of any gaps between what the service user needs and wants and the skills and knowledge of staff (see chapter 13 for examples). Assessment and information gathering The quality of an individual plan is directly related to the quality of the information on which it is based. There must be an assessment phase in which information about the person’s history, preferences, needs and aspirations is collected. The assessment phase involves gathering information by: • talking to the person with a disability, family members and caregivers, and other significant people • reviewing available documentation (such as previous plans or reports) • conducting assessments (for example, through an adaptive behaviour scale) • organising specialist assessments (for example, communication or health assessments) • consultating with relevant service providers (with the consent of the person with a disability). The integrity of assessment

Developing a meaningful plan for a person requires the collection of accurate information on which to base that plan. There are some fundamental principles of assessment that will ensure the integrity of the information collected and influence the success of the plan. These principles are: • reliability • validity • informed judgement. Reliability refers to the accuracy and consistency of information across time, across information sources, and across information gatherers. While it is not always possible to be totally confident

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about the reliability of the information gathered, a fundamental principle is that errors must be reduced as much as possible. This can be achieved by: • collecting information from multiple sources (for example, from the person with a disability and from their family members) • using alternative methods of information gathering (for example, where the person with a disability does not speak, direct observation of their preferences and behaviour may be useful) • collecting information across time • collecting information from different assessors. Validity means that the information gathered and the ways in which it is gathered are relevant to the planning process and to the person. For instance, conducting a support-needs assessment without also identifying the person’s goals, aspirations, dreams and preferences does not constitute a valid assessment process. To ensure the validity of the information being collected you may ask yourself some questions, including: • Do the ways in which you gather information in the assessment process identify the issues relevant to the person? • Is the assessment process useful in individual planning? • Does the process collect the information needed for effective individual planning? Often the person facilitating the preparation of an individual plan will need to make an informed judgment. This may be necessary where the person with a disability has a limited ability to communicate and/or does not have an available support network. Be aware, however, that limited communication is not an excuse to avoid trying to determine what the person’s needs and desires are (see chapter 6). In general, where a paid worker is required to make judgments, these should be informed to ensure that the interests of the person with a disability are best met. Groth-Marant (1999) states that judgment can be better informed through: • developing rapport with the person and their support networks • using approaches to information gathering that provide flexibility

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and focus on the person’s uniqueness without being influenced by the information gatherer’s own personal or cultural biases • testing assumptions and conclusions by analysing the information gathered • recognising that it is a mistake to give information collected earlier more importance than that collected later (in other words, don’t dismiss new information just because it contradicts conclusions you have already arrived at) • recognising that the personal attributes of the person conducting the assessment will affect their ability to make informed judgments. A worker’s experience and competence are good examples of personal attributes that can affect informed judgement. Nevertheless, personal judgment is subject to error. Some ways to avoid errors are: • to use comprehensive approaches in assessment • to consider information that does not support your personal conclusions or assumptions • to avoid relying on memory and refer to notes as much as possible • to seek feedback from colleagues and significant others regarding the accuracy and usefulness of your judgments. Measures and tools There are many measures that can be used for assessment and information gathering. You may want to think of these as part of a toolkit to be taken out and used according to the job to be done. The ‘job’ in planning will depend on the context of the planning and the tools selected according to the person’s needs and priorities. The AAMR (2002) discusses a range of measures and tools that can be used for assessment. These include: • support intensity scales, used to assess the assistance the person needs across a number of important life areas • adaptive behaviour scales, used to assess the person’s skill levels • environmental assessments, used to analyse the characteristics of the settings in which the person lives, works, or receives educational or recreational services

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• mental health measures, used to ascertain the presence of signs and symptoms of mental illness • quality of life scales, used to assess the quality of the person’s life circumstances and resources, both from their own perspective and against societal standards • health checks • choice and decision-making questionnaires, used to measure the amount of choice and decision making a person engages in and their satisfaction with this • personal risk assessment tools, used to measure whether the choices and actions a person takes in their day-to-day life pose a significant risk to them • communication assessments • person-centred planning tools, such as essential lifestyle planning and personal futures planning. A number of person-centred planning approaches are described later in this chapter. Measures and tools should be selected after considering a number of issues: • there must be a good match between the measure and the purpose of the assessment (for example, a report from a neurologist is not likely to help in determining the person’s preferences for community activities) • the psychometric properties of the measure should be checked where they are available (psychometric properties indicate the accuracy and usefulness of the measure – they include reliability and validity) • the measure should be appropriate for the person (their age, culture and means of communication, for example, should be considered) • the person doing the assessment should be suitably trained and qualified • the assessment process should be consistent with professional standards and practices • the process should take place in relevant contexts and environments • the process should take account of the person’s physical and mental presentation at the time of the assessment (for example, if

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the person is anxious during the assessment the results may not be accurate) (AAMR, 2002). The purpose of the assessment phase is to build up an accurate profile of the person from which to develop a meaningful plan. Consequently, assessment should be as comprehensive as resources and time permit, and should include an investigation of the following: • personal competencies – the person’s strengths and skills – so that the objectives and strategies from the plan will be achievable and relevant for the person • individual needs (and their context – it is also important to conduct an environmental assessment to identify the demands of the person’s environment and give insight into their skill development needs) • individual preferences and aspirations (examples of questions that might be asked are ‘What other social activities should we provide?’or ‘Do you want to try a different job in the work crew?’) At this stage, it can be helpful to encourage the person to prioritise their preferences, particularly where their wish list is extensive • family and caregiver perspectives and aspirations – talk to family and caregivers before plan formulation and find out their views. Such informal consultation often identifies family concerns that can be successfully addressed through the individual plan • current service use, including an analysis of benefits to: – identify the services currently being provided – show whether the person’s needs and aspirations are being met – identify any need for other services or opportunities • available services and opportunities, including eligibility criteria, cost, availability of places and suitability to the person of various options (if this is done before the plan is written it is more likely that sustainable and realistic strategies for achieving the objectives will be identified) • priorities for service provision and/or action. Priorities can be identified by reflecting on the person’s aspirations and by examining the person’s current circumstances. O’Brien (1989) argues that a comprehensive assessment process, and subsequent actions, should lead to five critical service accomplishments for the person with a disability. These are:

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• community presence – the use of generic community-based services and opportunities • choice – increased ability and participation in making choices and taking actions that are life-enhancing • developing competence – the development of social and daily living skills that promote the achievement of valued social roles • respect – the person’s contributions are recognised and respected • participation – forming and maintaining meaningful relationships and community ties. Box 5.2 gives a framework for using O’Brien’s five service accomplishments to identify the priorities, goals and actions of the individual plan for Maria. BOX 5.2 •

FIVE SERVICE ACCOMPLISHMENTS

Maria is 19 and has an intellectual disability. She is described as having medium support needs, and has Down syndrome and some health issues including short-sightedness and a corrected mitral valve defect. Maria lives with her mother and father and Pina, her 12-year-old sister. Maria attends a day program for people with disabilities, and stays in a respite group home for a weekend every month. Maria’s verbal communication ability means that she is not able to tell people exactly how she feels or what she wants. She will often guide people to what it is she wants. She has a limited vocabulary, speaking in one to two word sentences. Her ability to understand is more developed. Maria can independently complete some tasks of daily living such as getting dressed, washing her hands and brushing her teeth. She shows interest in doing things for herself, and can become quite angry when people try to do things for her. Maria’s case worker from the respite service has used the five critical service accomplishments to identify Maria’s strengths and needs as well as the goals to be addressed in Maria’s individual service plan (see page 123). After using this framework to identify what has to happen to achieve positive outcomes for Maria, the case worker will write the plan by: •

describing Maria’s current situation

•

specifying the objectives for Maria

•

specifying the strategies that will be implemented to ensure that the objectives are achieved.

The individual service plan will also identify who will be responsible for carrying out the strategies in the plan.

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Writing the plan A well written plan, based on a comprehensive assessment, will be related to the provision of services that result in positive outcomes for the person concerned. Often a plan is prepared by conducting a meeting. However, this may not be an ideal situation – a meeting environment may not be conducive to full involvement by the person with a disability or their family. Carnaby (1997) interviewed people with an intellectual disability about their experiences with planning and found that many were unclear about what the meeting was for and reported having difficulty in speaking up about issues with which they were uncomfortable. By observing meetings, he also found that the person with an intellectual disability was excluded from the discussions more than they were included. Thus, if meetings are to be used as part of the planning process, it is important to: • canvas the views of service users beforehand • make sure that appropriate communication supports are used where needed • make sure that the meeting is grounded in the recognition that it is the service user’s meeting, not anybody else’s. The individual service plan should be based on the information gathered through the assessment phases. The priorities identified in the previous phase will determine the plan’s objectives. As a result, the plan will have clear objectives and strategies. Objectives

The objectives of the plan: • must be clear • must be measurable in observable terms • must state an agreed outcome. The objectives should reflect the needs, priorities and aspirations of the person as determined through the assessment phase. A plan should include both long-term goals and short-term objectives. Long-term goals reflect the vision the person has for their life (for example, Peter aspires to getting a job in the hospitality industry). Short-term objectives assist in the achievement of the long-term goal (for example, Peter aims to successfully complete two modules towards his certificate-level hospitality qualification from TAFE).

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Strategies

Strategies must be designed to achieve the stated objective or goal. They should also be clear and specific, so that any person consulting the plan, such as a casual staff member, will know what actions they are to take. As the achievement of each objective will often involve a number of strategies, a multi-faceted approach is appropriate and likely to be effective. The range of strategies that make up a multi-faceted approach include: • instructional techniques such as reinforcement (the encouragement of desired behaviour), fading (reducing the amount of assistance provided to promote independence), shaping (accepting closer and closer approximations of the behaviour) and generalisation (promoting skills learnt in one setting to other settings). Useful resources for more information on these techniques include Alberto and Troutman (2003), as well as Martin and Pear (2003) • helping the person to engage in relevant activities, wherever possible including community-based activities that provide recreation opportunities to develop social skills and build informal support networks, and opportunities to display skills learnt in other settings • providing specific supports to the person and their family such as support to promote regular contact with the family. Such support can have the effect of enhancing the relationship between the person and their family, and between the family and the service provider • linkages between the person and other service providers such as education or health services. A range of strategies may be required for each objective of the plan. The plan must also identify those responsible for making sure the actions identified in it are carried out. In most situations, the person responsible will be a staff member of a service provider. Implementing the plan The mere action of developing a plan will not, in itself, result in positive outcomes for a person with a disability. The preparation of an individual service plan is a waste of time if it isn’t implemented. If a service is to be person-directed, its activities and priorities will be

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determined by the quality of each person’s plan, and the extent to which the plan is implemented. The implementation of the plan involves not only providing the activities, supports and linkages specified in the plan, but also developing and implementing any programs that have been identified. Emerson and Hatton (1996) have identified a number of factors that affect the implementation of an individual plan and, consequently, the outcomes for people with disabilities: • an adequate level of human and financial resources through adequate staff–client ratios, consistency of staff, appropriate staff competence and knowledge, and funding • internal organisation structures, which must ensure efficient use of resources and planning of staff and service users (see Felce, 1998; chapter 10) • organisational leadership through the acquisition and maintenance of sufficient resources, the establishment of appropriate internal structures, and motivation of staff to implement the procedures to ensure quality. There is commitment to person-directed services and staff are supervised and supported to engage in person-directed practices. In addition, the community’s capacity to support the plan will be a significant factor, and disability organisations and staff may need to engage in community development and education to ensure the participation of people with disabilities in community life. This issue is discussed in detail in chapter 8. Monitoring and evaluating the plan The implementation of the individual plan should be monitored and evaluated on an ongoing basis. This phase of the process involves: • monitoring the actions being taken to implement the plan • reviewing progress toward the objectives • revising the plan as necessary. This is important if the plan is to be a living document. A variety of techniques can be used to monitor and evaluate the plan. One group of techniques, quantitative methods, may use checklists, charts, coding systems and the like to record progress.

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Qualitative techniques may use approaches such as diary entries, comments and running records for monitoring. In some cases, it may be desirable to use a variety of techniques. For instance, think back to Maria’s plan (box 5.2) and the actions identified. Maria’s progress in learning how to walk safely around the neighbourhood could be monitored by reviewing the progress notes kept by staff and by talking to those involved to gain their dayto-day observations. Her participation in a range of activities of her choice could be reviewed by examining the log kept of her weekly activities. Regardless of the technique used, it is important that monitoring occur on a regular basis to demonstrate that staff are accountable. Chapter 9 considers some of the regulatory requirements in Australia that deal with the maintenance and monitoring of individual plans. Ongoing review of individual plans can occur: • during day-to-day interactions • during regular staff meetings • through communications with others, such as family members and other service providers (with consideration for confidentiality and privacy). Ongoing monitoring of the implementation of individual plans should address: • the satisfaction of the person and their family members • changed needs, priorities or preferences • difficulties and barriers experienced • the effectiveness of the strategies being implemented in achieving the person’s objectives and goals. Individual plans should always be reviewed in terms of the outcomes for the person for whom they were written. The methods used to formulate the plan during the assessment phase, such as adaptive behaviour assessments, consultations with the person, family, caregivers and key stakeholders, and reviewing available documentation, can also be used for evaluation, with attention to: • evidence of increases in skill levels or decreases in challenging behaviours (for example, through measures such as adaptive behaviour assessments)

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• the person’s satisfaction (and that of their family) with the services provided (for example, through interviews, discussions and surveys) • the level to which identified needs and preferences have been addressed (for example, through the administration of supports intensity scales, or interviews) • evidence of increased participation in community-based opportunities (for example, membership of community orgnisations). The focus of the review and evaluation of individual plans should be consistent with O’Brien’s five service accomplishments (see pages 121–122). On the basis of the evaluation, a revised plan should be developed as part of the continuous cycle of gathering information, taking actions, reviewing, learning and revising the plan.

Person-centred planning While individual planning, including individual service plans, has always been intended to be focused on the person with a disability, the research shows that in fact it often focuses on issues that are not immediately relevant to the person (Hulgin, 2004). For example, the plan may provide activities that are easy for the disability service to organise even if they do not meet the person’s needs. Person-centred planning has been promoted as a more desirable alternative to individual planning in response to such criticism. Although person-centred planning has been portrayed as a new way of doing planning, it is just another step in the evolution of individualisation in services and planning (Emerson & Stancliffe, 2004). While individual planning is, in theory, intended to bring the focus of attention onto the person, this aim has often been lost as the needs of organisations and systems take priority. The term ‘person-centred planning’ is used to bring the focus back to the person. The cornerstone of person-centred planning is a recognition of the uniqueness of each person, and having the person’s needs, preferences and visions driving the planning process and ultimately the life they live. Sanderson (2000) lists five key features of person-centred planning:

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• The person is at the centre of the planning process. • Family members and friends are partners in planning. • The plan reflects what is important to the person, their capacities and the support they require. • The plan results in actions that are about life, not just services, and reflect what is possible, not just what is available. • The plan results in ongoing listening, learning and further action. A number of different approaches to person-centred planning have been developed. Some of these are discussed below. Essential Lifestyle Planning Essential Lifestyle Planning (ELP) was developed in the late 1980s, initially for people moving from institutions into community settings (Smull & Sanderson, 2002). ELP focuses on: • finding out what is important to the person • learning about what health, safety and risk means to the person and to those who know and care about them • discovering what is important to keep the person healthy and safe • finding out how someone can be supported in having a balance between being happy and being safe, while making the best use of public money • describing what has been learned in a way that is easily accessible to those who will help the person get what is important to them (Smull & Sanderson, 2002; Subscriber Network, 2001). In ELP the person’s typical life patterns (by day, month, year) are looked at, as well as their reactions to situations and to other people. The information-gathering process involves listening carefully to what others say about the person, as well as identifying what they need to know to support the person successfully. Conversations and other means are used to identify: • the essentials – things that must happen if the person is to achieve their lifestyle and maintain their well-being • who and what is important – things that will make a significant difference, without which life may be tolerable, but little more

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• pleasures – things that the person would like to have (or not have) in their life to make it more pleasurable and satisfying (Subscriber Network, 2001). Consistent with other forms of planning, ELP has five stages (illustrated in figure 5.3): 1

Think about what you want to learn and how to learn it.

2

Gather the information.

3

Develop and review a first plan.

4

Put what has been learned into practice.

5

Ongoing learning!

FIGURE 5.3 THE ESSENTIAL LIFESTYLE PLANNING PROCESS (Adapted from Smull & Sanderson, 2002, p. 23)

1. What do you need to learn?

5. Ongoing learning

2.Gather information

4. Put it into practice

3. Develop the first plan

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The McGill Action Planning System The McGill Action Planning System (MAPs) is a seven-step process for developing a plan of action for a person or organisation. The aim of MAPS is to move away from ‘nightmares’ – worst case scenarios – towards a person’s dreams (Forest & Pearpoint, 1997). In preparing a MAPs, seven questions are addressed: • What is the person’s history? • What are their dreams? • What are their nightmares? • Who is the person? • What are their unique strengths and gifts? • What do we need to do to avoid the nightmare and reach the dream? • What is a plan of action? As with many person-centred planning approaches, MAPs uses diagrams and pictures to represent these issues. A cardinal rule of facilitation is that a person must not do MAPS for another person without having done one for themselves (Forest & Pearpoint, 1997). Planning Alternative Tomorrows with Hope The starting point in Planning Alternative Tomorrows with Hope (PATH) is to develop a clear picture of a positive future and then to think backwards (Pearpoint, O’Brien & Forest, 1995). PATH addresses short-term and long-term planning, and helps identify the dreams and desires of the focus person. A strength of PATH is that it provides timelines for achieving goals and taking actions (goals are identified for the next 12 months and actions are identified for the next few months, the next four weeks, and tomorrow), and it breaks goals into measurable and achievable steps (Kincaid & Fox, 2002). PATH can be a useful planning tool as it acknowledges that people with disabilities and their families have dreams, which in the past have often been ignored, or not encouraged. It can also provide a basis for discussion to clarify aspects of the person’s dreams, visions and goals, and the actions that others may take

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on as their responsibility. For instance, a service provider may not be able to support the focus person in all aspects of their dreams and goals but can identify those actions within the PATH they can commit to in supporting the focus person. PATH comprises eight steps that are followed by a support group to develop the plan (Pearpoint et al., 1995; Subscriber Network, 2001): 1

Touch the dream – the North Star (perhaps in the southern hemisphere we should touch the Southern Cross). What does the person want the future to be, what is their ultimate purpose? If the person is unable to communicate, other people will need to be involved who know them well.

2

Sense the goal and determine the focus for the next year – think about the future as if it has happened. What is it like?

3

Ground it in the ‘now’ – Where am I/are we? Consider the present as it really is and the difference between the present and the desired future. This will help people to see where change needs to happen.

4

Identify people to enrol – who needs to be involved to make the necessary changes happen? If they aren’t already involved, how will they be recruited?

5

Recognise ways to build strength – think about ways to improve skills, relationships and knowledge that will help in the achievement of the desired future.

6

Chart action for the next few months – identify in the medium term what needs to be done to achieve the goal. Plan to do the easiest actions first.

7

Plan the next month’s work – bring things down to a very speci-fic plan of action for the next month.

8

Commit to the first step – take action and keep going.

PATH uses a pictorial representation of goals, dreams and actions identified through the PATH planning process that is shown in figure 5.4.

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FIGURE 5.4 PLANNING ALTERNATIVE TOMORROWS WITH HOPE (PATH) (adapted from Pearpoint et al., 1995)

3. Now 4. People 5. Ways 8. Commit 7. Next to the to enroll to build month’s strength first step work

6. Charting actions

2. GOAL

1. Dream

Personal Futures Planning Personal Futures Planning (PFP) is based on the premise that relationships and the development of opportunities in the community are of central importance (Subscriber Network, 2001). The seven steps for preparing the plan are: 1

Improve what is known about the person – review their personal profile.

2

Look at what is changing in the world around them – review trends in the environment.

3

Identify a more desirable future – look for ways that the person could have more positive experiences.

4

Identify those things that could or do block progress – identify the first steps needed to overcome them.

5

Identify the step-by-step actions needed to build the desired future.

6

Take action – agree on five small steps that build on step 3.

7

Identify ways in which the system needs to change.

The development of a personal futures plan involves four meeting frameworks (Mount, 1994):

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1 Exploring commitment

The facilitator meets with the focus person and others to determine: • who should be involved in the planning process • how the process should be adapted to fit unique challenges and opportunities • what the facilitator can do to create the conditions that will make the plan most likely to be implemented. At this stage of the process a relationship map is developed to identify the people in the focus person’s life and the nature of their relationships. 2 Discovering opportunities

The facilitator meets with the focus person and a small group of friends, family and staff members to build a description of the person’s life story, opportunities and capacities to work with and conditions that challenge future development, and to lay the groundwork for the planning meeting. The personal profile consists of a series of pictorial or word maps of the person’s life. There are basic and optional frameworks that make up the personal profile (Mount, 1994 p. 20): • The relationship map identifies opportunities for support and assistance (from meeting framework 1). • The places map describes the pattern of current daily life. • The background map provides an overview of the life experience of the focus person and their family. • The preferences map describes personal preferences, gifts and interests, as well as conditions to avoid. • The dreams map describes ideas about personal dreams and desires for the future. • The hopes and fears map describes how the focus person feels about the opportunities they see to make things happen, as well as the obstacles. • The choices map (optional) describes the decisions made by the person and the decisions made by other people, and clarifies the need for personal assistance.

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• The health issues map (optional) describes conditions that promote or threaten the person’s health. • The respect map (optional) describes the personal characteristics that can create barriers to community acceptance. A sample choices map is shown in table 5.2. TABLE 5.2 SAMPLE CHOICES MAP FOR AN ADULT WITH DEVELOPMENTAL DISABILITY Choices Made by focus person

Made by others

• Type of drink to have. • Amount of time spent with housemates. • How much of meal to eat. • Whether to have a bath or shower. • What to wear from the clothes in his wardrobe. • Time to go to bed and get up on weekends. • Which TV shows to watch or music to listen to. • When to phone his family.

• • • • • • • • • • •

Who to live with. Whether to take medications. Which day program to attend. What to spend money on. What clothes to buy. The food cooked for meals. The suburb he lives in. When to have a bath or shower. Time to go to bed and get up on weekdays. Which staff support him. Activities he is involved in at the day program. • Number of hours at the day program. • When to visit his family.

3 Finding new directions

The facilitator meets with a larger group of people involved with the focus person to: • develop a plan for implementation • help people make commitments to action. At this stage a PFP is developed after reviewing the patterns and issues raised in the personal profile. The PFP contains the images of the future shared by all members of the group, and the strategies to achieve those visions. 4 Taking action

The facilitator regularly meets with the group to reflect on the experience of implementation, and discover the next steps for action.

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As the PFP process progresses, more people are recruited to participate and expand the circles of support available for the focus person. Commitment is sought from this group of people for taking action and for staying involved. Common elements of person-centred planning While there are a number of approaches to person-centred planning, they have many common elements. Butterworth, Steere & WhitneyThomas (1997) identify these elements as follows. Empowering the person

Planning is intended to engage the person with a disability in a number of ways. These include determining participants and meeting formats, and defining the person’s preferences and desires. Typical strategies to promote engagement are: • the use of a facilitator • giving the focus person control over who is involved • supporting the focus person and their circle of support to identify goals without restriction. Involving natural sources of support

Disability services, government agencies and the like are part of the formal service system. While this system has many advantages, one problem is that it is not good at providing some supports that we all need, such as friendships, and the assistance and acceptance that families can provide. Social networks are an important source of natural, informal supports for everyone, they are crucial to personal and social adjustment and they contribute to quality of life. Changing the role of professionals in service planning

Person-centred planning requires that professionals change from being dominant in their relationship with people with a disability to acting in partnership with them, their families and other sources of natural support. The role of the professional becomes that of a facilitator and consultant. Using a facilitator

A facilitator is an independent agent who manages the planning process and the equal participation of all involved. It is assumed that an independent facilitator can maintain open and unrestricted discussion that is not affected by individual or system priorities.

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Opportunity for redefining the person with a disability for all participants

Instead of focusing on the needs and deficits of the person with a disability, a positive view is developed and presented. Personcentred planning develops a positive personal profile of the person that identifies their activities, abilities and preferences over all areas of life activity. Clear and unrestricted vision for the future

Central to person-centred planning is that the discussions, and the goals that are developed, should not be entirely restricted by practical issues such as the availability of services, the skills or behaviours of the person with a disability, or the availability of funding. Limitations to the achievement of goals and visions are regarded as problems; as such, they are subjected to problem-solving discussions through creative brainstorming. Creative brainstorming

The implementation of an unrestricted personal vision requires that systemic and attitudinal barriers are addressed along with barriers to the achievement of personal visions and goals. For this to occur members of the planning team need to allow themselves to consider as many positive options as possible. Immediate lifestyle change

While major changes to a person’s life may be a long-term proposition, and all the issues may not be addressed at once, change must begin immediately. There are changes that can be made immediately, and they should be planned for. Making immediate and positive change is reinforcing for both the person with a disability and their planning team. Challenges in person-centred planning Person-centred planning that is controlled and determined by the person with a disability is the aim of all individual planning. However, there are implementation challenges for both individual service plans (as discussed on pages 125–126 and person-centred plans. Mansell and Beadle-Brown (2004) argue that there is little evidence to support claims that person-centred planning is a better approach to individual planning, and that there are a number of factors that contribute to a gap between planning and action. In summary, these are: • people with severe or complex problems who may be avoided by others or for whom the development of positive relationships is difficult

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• misjudgement of communication capacity where staff (and others) underestimate the ability of a person with limited expressive language to understand, with the result that they do not involve the person in the discussions and decision-making processes • an inability to comprehend choices and decisions by people with cognitive impairments, affecting their ability to contribute to their plan • an assumption of an existing supportive community which in reality may not currently exist. For instance, in an era of doubleincome families the availability of volunteers is decreasing, which may affect the recruitment of people to make up a circle of support • difficulties in achieving reciprocity in relationships. Many people with developmental disabilities are socially isolated and have extremely limited social networks. This is partly due to deficits in the skills required to contribute to reciprocal relationships, and to significant cognitive or communicative impairments. O’Brien & Lovett (1993; cited in Butterworth et al., 1997) have also identified several issues that impact on the effectiveness of personcentred planning: • the extent to which the person with a disability should control the direction of the process; for example, a person with impaired cognitive functioning may make life choices that pose a risk to themselves or others without the ability to comprehend the consequences of such decisions • whether person-centred planning is relevant to a person with a disability who chooses not to engage in the planning process • the degree to which the mission and vision of the disability organisation, and its day-to-day practices, are person-centred • how much a person’s family, friends, neighbours and co-workers can and should be expected to become involved in the planning process and taking action • the importance of convening an identified, ongoing support group for the person.

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Conclusion Individual plans must be part of an approach that delivers positive outcomes for people with disabilities by setting the scene for action by service providers as well as the person with a disability and their circle of support. Well researched and well written service plans that are individualised are more likely to result in services being led by the person’s needs and aspirations rather than the needs of the organisation. Person-centred plans have the potential to provide the context for quality individual service plans. Good planning is not just about the process taken to develop and implement the plan. The ability of the person facilitating the planning process is also critical. This person must be knowledgeable and skilled, with experience in good communication and collaboration (see chapter 14 for more about this). Person-centred planning has extended our notion of individual planning in the past two decades. The approach aims to support the person with a disability to develop a vision for their future and ensure that the planning process focuses on the achievement of that vision. However, claims that person-centred approaches are superior to other approaches to individual planning in achieving positive change in a person’s life have not been tested, as there has been little evaluation or research into person-centred planning. All approaches to planning for people with disabilities face challenges in the extent to which they are implemented and make a contribution to the achievement of positive outcomes in day-to-day life. Individual planning will only be person-centred and effective where there is organisational leadership, skilled planners and committed support workers who are capable of building the capacity of the community, as well as the capacity of people with a disability and their support networks.

Learning activities 1

Imagine you have just won a holiday. It’s three weeks away from home, with most expenses paid. Where would you like to go? Who would you like to go with? How would you like to travel? What would you like to do on your holiday? What would you like to make sure of?

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Now, imagine that you have had your jaw wired shut and someone else is going to plan the holiday for you. Think of the following: (a) What qualities would you like in the travel planner? (b) What would you like to control? (c) What would you like them to know about you? (d) Who would you want to plan for you? Remember, the qualities of your ideal planner and what you would like to control are likely to be same for people with disabilities, their families and other supports. (Vining, n.d.). 2

Draw your own PATH by picturing a clear positive future for yourself and following the process described on page 132 Draw the pictures and/or write the words for your PATH. If you wish, you can use separate pieces of paper for each part of the PATH. Use the diagram on page 133 as a guide for your PATH.

3

Review the description of Maria in box 5.2. Then read the expanded description below and answer the questions that follow. Maria enjoys going shopping and frequently walks to the local shop to buy lollies, chips, and soft drinks. Maria and her family have recently moved into this suburb. They received a range of services where they used to live, including the maximum amount of respite accommodation for which they were eligible. Maria completed her schooling just before the family moved. She has been provided with respite accommodation on a regular basis since this occurred. A case manager has been allocated to Maria and her family. The case manager has arranged for Maria to commence a placement at a local day centre. However, she is only able to attend three days a week because of a shortage of places. She is not involved in any other activities outside the family home.

(a) Who are the people in Maria’s life? What do you observe about her relationships and networks? (b) What are the patterns of her everyday life (such as the places she goes)? What do you observe about this? (c) What are the choices Maria makes for herself? What choices are made for her by others? (You can draw a choices map for this as shown in table 5.2).

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(d) Who would Maria want involved in the creation of her person-centred plan? (e) What do you think are Maria’s: • abilities and gifts? • interests? • preferences? • needs? How would you obtain information about these? (f) What do you think are Maria’s dreams and desires for the future? (g) What are the opportunities available to Maria that will help her achieve her dreams? (h) What are the obstacles to these dreams? (i) Who could be recruited to assist Maria in getting the lifestyle she desires? (j) Which community places could Maria participate in? (k) What are some immediate actions that could be taken, and by whom? 4

Think of a person for whom you have prepared an individual plan, then answer the following questions. (a) What was the process for developing this plan? (b) Who was directly involved? (c) What role did the person with a disability have in the development of the plan? (d) What are the person’s informal networks? Did you seek to increase or support them? (e) What environmental changes were needed to ensure that the person was better supported? Were these changes made? (f) To what extent has this plan been responsible for positive outcomes in the person’s life? (g) How do you know? (that is, what are your sources of evidence?)

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(h) Did your planning process strengthen the person’s ties with their networks and community? 5

If you are currently working with people with disabilities, reflect on your own, your team’s, and your organisation’s persondirected practices. Consider each of the elements listed below, and for each element make comments about: (a) your own practices (b) your team’s practices (c) your organisation’s capacity for person-directedness. • The person expresses their needs and desires. Accommodations for communication are made to maximise the person’s ability for expression. • The person’s cultural background is recognised and valued in the decision-making process. • Before a planning meeting is initiated, a pre-planning meeting occurs. In the pre-planning meeting the person (if they are over 14 years old) chooses: –

dreams, goals, desires and any topics about which they would like to talk

–

topics they do not want discussed

–

who to invite

–

where and when the meeting will be held

–

who will facilitate

–

who will record.

• Exploration of the potential resources for supports and services to be included in the person’s plan are considered in this order: –

the person

–

family, friends, guardian and significant others

–

funded supports and services available for all citizens

–

funded disability, community health and mental health services.

• The person has opportunities to reconvene any or all of the planning processes whenever they want or need to.

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• The planning process encourages the strengthening and developing of natural supports by inviting family, friends and allies to participate in planning meetings to help the person with their dreams, goals and desires. Now identify one challenge for yourself and an action that you could (and will) take to address that challenge and enhance your own person-directed practice or your team’s practice. (Michigan Department of Community Health, 2002). Now take the action you have identified!

References AAMR see American Association on Mental Retardation Alberto, P. A. & Troutman, A. C. (2003). Applied behavior analysis for teachers. (6th edn). Columbus, OH: Merrill. American Association on Mental Retardation (2002). Mental retardation: Definition, classification and systems of support. Washington, DC: AAMR. Ashman, A. & Elkins, J. (2005). Educating children with diverse abilities. Sydney: Pearson Education. Butterworth, J., Steere, D. & Whitney-Thomas, J. (1997). Using person-centred planning to address personal quality of life. In R. Schalock (Ed.), Quality of life volume II: Application to persons with disabilities (pp. 5–23). Washington, DC: AAMR. Carnaby, S. (1997). ‘What do you think?’: A qualitative approach to evaluating individual planning services. Journal of Intellectual Disability Research, 41, 225–31. Emerson, E. & Hatton, C. (1996). Deinstitutionalization in the UK and Ireland: Outcomes for service users. Journal of Intellectual & Developmental Disability; 21, 17–37. Emerson, E. & Stancliffe, R. J. (2004). Planning and action: Comments on Mansell & Beadle-Brown. Journal of Applied Research in Intellectual Disabilities, 17, 23–6. Felce, D. (1998). The determinants of staff and resident activity in residential services for people with severe intellectual disability: Moving beyond size, building design, location and number of staff. Journal of Intellectual & Developmental Disability, 23, 103–19. Forest, M. & Pearpoint, J. (1997). Life is either a daring adventure or nothing at all! In P. O’Brien & R. Murray (Eds), Human services: Towards partnerships and supports (pp. 305–18). Palmerston North, NZ: Dunmore Press. Groth-Marnat, G. (1999). Handbook of psychological assessment. New York: John Wiley. Hudson, A. & Cummins, R. A. (1991) General service plans: An evaluation of their content within two service delivery systems. Australia & New Zealand Journal of Developmental Disabilities, 17, 401–11. Hulgin, K. M. (2004). Person-centered services and organizational context: Taking stock of working conditions and their impact. Mental Retardation, 42, 3, 169–80. Kincaid, D. & Fox, L. (2002). Person-centred planning and positive behaviour support. In S. Holburn & P. M. Vietze (Eds), Person-centred planning: Research, practice and future directions (pp. 29–50). Baltimore: Paul H Brooks. Mansell, J. & Beadle-Brown, J. (2004). Person-centred planning or person-centred action? Policy and practice in intellectual disability services. Journal of Applied Research in Intellectual Disabilities, 17, 1–9. Martin, G. & Pear, J. (2003). Behavior modification: What it is and how to do it. Upper Saddle River, NJ: Prentice Hall.

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Meyer Children’s Rehabilitation Institute (1985). Introduction to individual program planning. Nebraska: University of Nebraska. Michigan Department of Community Health (2002). Person-centred planning: Revised policy practice guideline. Retrieved May 14, 2004 from . Mount, B. (1994). Making futures happen: A manual for facilitators of personal futures planning. St Paul, MN: Minnesota Governor’s Planning Council on Developmental Disabilities. O’Brien, C. L. & O’Brien, J. (2002). The origins of person-centered planning: A community of practice perspective. In S. Holburn & P. M. Vietze (Eds), Person-centered planning: Research, practice, and future directions (pp. 3–27). Baltimore: Paul H Brookes. O’Brien, J. (1989). What’s worth working for? Leadership for better quality human services. Lithonia, GA: Responsive Systems Associates. O’Brien, J. (2004). If person-centred planning did not exist, Valuing people would require its invention. Journal of Applied Research in Intellectual Disabilities, 17, 11–15. Office of the Public Advocate (1992). Case management. Melbourne: Office of the Public Advocate. Pearpoint, J., O’Brien, J. & Forest, M. (1995). PATH workbook. Toronto: Inclusion Press. Osborne, J. G. (2005). Person-centred planning: A faux fix in the service of humanism? In J. W. Jacobson, R. M. Foxx & J. A. Mulick (Eds), Controversial therapies for developmental disabilities: Fad, fashion and science in professional practices (pp. 313–31). Mahwah, NJ: Erlbaum. Sanderson, H. (2000). Person-centred planning: Key features and approaches. York: Joseph Roundtree Foundation. Smull, M. & Sanderson, H. (2002). Essential lifestyle planning: A handbook for facilitators. Manchester: North West Training & Development Team. Subscriber Network (2001). Individual and person-centred planning. Retrieved October 15, 2003 from . Thompson, J. R., Hughes, C., Schalock, R. L., Silverman, W., Tasse, M. J., Bryant et al. (2002). Integrating supports in assessment and planning. Mental Retardation, 40, 390–405. Vining, V. (n.d.). Essential lifestyle learning community. Retrieved February 17, 2004 from .

6

People with extensive to pervasive support needs Vanessa A Green, Jeff Sigafoos, Mark O’Reilly and Michael Arthur-Kelly

Learning objectives After reading this chapter and completing the activities you should be able to: • describe the characteristics of people with intellectual and developmental disabilities who require extensive to pervasive supports • identify the major historical trends and background developments that have influenced community-based services for people with intellectual and developmental disabilities who require extensive to pervasive supports • explain how to identify and prioritise support goals for people with intellectual and developmental disabilities who require extensive to pervasive supports • develop an appropriate individualised service plan for a person who requires extensive to pervasive supports • describe the steps involved in implementing and evaluating the individual plan • identify the characteristics of current best practice in the provision of community-based services for people with extensive to pervasive support needs.

Introduction This chapter focuses on community-based services for people with

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intellectual and developmental disabilities who require extensive to pervasive supports. Such people are vulnerable because they often have limited communication skills, and are highly dependent on others for most of their daily living and self-care needs. For example, people with extensive to pervasive support needs typically do not speak, may have limited comprehension of speech, have deficits in social interaction, and may be unable to feed, dress, wash or toilet themselves. Supporting such people in community-based services requires dedicated staff who know how to provide the necessary types of intensive supports and services. Staff must not only provide good care, but also strive to enhance the person’s quality of life by serving as effective advocates and working to increase opportunities for the person to access the community and participate in the many and varied activities of daily life that most of us take for granted. This chapter discusses the types of services and supports that can be provided by staff to improve quality of life for people with an intellectual disability who require extensive to pervasive supports. The characteristics of people with an intellectual disability who require extensive to pervasive supports are described, followed by a brief historical overview of the development of community-based services for these people. (This historical background information complements the material on belief systems in chapter 3.) Next, we describe the development of individual plans for people with extensive to pervasive support needs, which complements material covered in chapter 5. The focus is on the implementation of evidence-based practice. Throughout this chapter an argument is made for the need to use only treatments that have proved effective through good research, rather than questionable therapies that either lack empirical support or are supported only by anecdotal information and testimonials. The overall intent of this chapter is to demonstrate how staff can design and implement good support programs that are sustained by research.

Characteristics of people with extensive to pervasive support needs It is likely that many of you will have little or no experience with people who require extensive to pervasive supports. This section describes the characteristics of people with an intellectual disability

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who require extensive to pervasive supports, and considers some of the major types of support that are likely to be needed by these people. Remember, however, that everyone is an individual. Even though two people may both be described as ‘requiring extensive to pervasive supports’, this does not mean that they have identical characteristics, nor does it mean that their required supports will be identical. The case study of Ian in box 6.1 illustrates some of the characteristics of people with an intellectual disability who require extensive to pervasive supports.

BOX 6.1 • IAN’S STORY Ian is a 25-year-old man with diagnoses of severe intellectual disability, cerebral palsy and visual impairment. The cause of his intellectual disability is not known. Attempts to assess his level of cognitive ability have been inconclusive because he could not be tested using standardised measures of intelligence. However, assessment of his adaptive behaviours using the Vineland Adaptive Behavior Scales (Sparrow, Balla & Cicchetti, 1984) have revealed substantial limitations in the social, communication, self-care and academic domains. Ian does not speak and has no formal mode of communication apart from a few manual signs that occur only when staff tell him to make a sign (‘Show me the sign for eat.’ ‘Show me the sign for drink.’) While he often vocalises and makes facial expressions that appear to be a way of trying to tell staff something, it is unclear whether these actions do in fact represent intentional communicative behaviours. He appears to understand some simple two-word commands such as ‘sit down’ and ‘come here’, but it is unclear to what extent he understands speech as opposed to knowing what to do because of the environmental context. Ian is very capable of making a choice when offered two or more options. For example, when shown a glass of juice and a glass of water and asked, ‘Which one do you want?’, Ian will typically reach for one of the two glasses and seems to consistently select water over other offered beverages. He appears to lack more advanced communication skills and rarely seeks to interact with others, perhaps because of his extremely limited social skills. Ian has very limited academic skills and has never been taught any vocational skills. For example, while he will point to pictures named by a staff member (‘Show me the cup.’ ‘Show me the dog’), his performance on this activity is no better than chance. He cannot read or write, match colours or shapes, or identify printed words. In terms of self-care skills, Ian requires almost complete assistance to feed, dress, wash and toilet himself.

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Ian has some physical disabilities consistent with a diagnosis of mild to moderate cerebral palsy. For example, while he can grasp a cup, he has a harder time using a knife and fork. Although he walks with an unsteady gait, he is mobile and enjoys going outside for walks. Ian also has severe behaviour problems that require extensive behavioural support to manage (see chapter 7 for a discussion of behaviour support issues). Specifically, he has a long history of frequent and extreme problem behaviour consisting of screaming, dropping to the floor and slapping the side of his head with his hands.

Diagnostic terms A variety of diagnostic terms have been applied to people such as Ian. Commonly used terms include severe/profound intellectual disability, high support needs, multiple disabilities, and developmental and physical disabilities. While ‘severe’ or ‘profound’ intellectual disability captures the severity of such people’s cognitive impairments, it is insufficient as a descriptor because so many of them also have associated physical disabilities, sensory impairments and/or complex medical conditions. Associated conditions Orelove, Sobsey and Silberman (2004) provide an extensive discussion of the various physical, sensory and medical conditions that are associated with severe/profound intellectual disability. It is in part because of these associated conditions that such people are said to have complex needs and typically require extensive to pervasive supports. Table 6.1 lists some of the conditions commonly associated with an intellectual disability, especially the more severe levels of intellectual disability. The high prevalence of associated physical, sensory and medical conditions among people classified as having severe intellectual disability was shown in a large survey conducted in Canada (McQueen, Spence, Garner, Pereira & Windsor, 1987). Although each person is unique, those described as having intellectual disability who require extensive to pervasive supports also often share a number of other characteristics that set them apart from people with less severe disabilities. These common characteristics include fluctuating bio-behavioural states and severe communication impairment.

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TABLE 6.1 CONDITIONS COMMONLY ASSOCIATED WITH SEVERE/PROFOUND INTELLECTUAL DISABILITY Condition

Description and examples

Cerebral palsy

Disorder of movement and posture. May include muscle stiffness (spasticity), writhing movements (athetosis), uncoordinated movement (ataxia), or floppy muscle tone (hypotonia). Curvature of the spine (scoliosis), dislocation of hips, foot and ankle deformities, shortening of the muscles (contractures). Deafness or hearing impairment, blindness or vision impairment, or (rarely) a combination of hearing and vision impairment (deaf-blind). Excessive and disordered electrical activity in the brain associated with pain, tingling, numbness, rhythmic contractions of muscles, uncontrollable movements and loss of consciousness. Inadequate nutrition (anaemia), respiratory problems, ear infections (otitis media), dehydration, skin irritation, muscle wasting. Inability to empty bladder requiring catheterisation, inability to eat requiring tube feeding, assisted breathing through ventilation.

Skeletal deformity

Sensory impairments

Seizure disorders

Health problems

Problems requiring medical procedures

Bio-behavioural states The term bio-behavioural state refers to levels of alertness that (for most people) typically fluctuate throughout the day in a predictable pattern. For example, most of us rise in the morning and, while we may be somewhat drowsy at first, we soon enter a state that could be described as awake or alert. For most of the day we are likely to remain in an active and alert state. In the evening, we may again become drowsy before entering the sleep state. It appears that the bio-behavioural state of some people who require extensive to pervasive supports, unlike that of people without disabilities, fluctuates widely and unpredictably throughout the day, sometimes changing from being highly active and alert at one moment to being very inactive or even asleep the next. Such wide fluctuations in levels of alertness may make it difficult to provide support and maintain the person’s engagement with their surroundings. Consider how difficult it might be to interact with a person if, over a period of a few hours, they move from being awake, to being drowsy, to being dazed, and finally to being completely asleep. Such fluctuations can be a problem if they occur repeatedly

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throughout the day. Studies that have investigated bio-behaviour states in people who require extensive to pervasive supports (see, for example, Ault, Guy, Guess, Bashinski & Roberts, 1995; Woodyatt, Marinac, Darnell, Sigafoos & Halle, in press) suggest that many such people spend a considerable amount of time in bio-behaviour states that are less than optimal for participation in community activities and social interaction. Imagine trying to engage someone in a community-based leisure program, for example, when that person is fading in and out of drowsiness. Fortunately, there are things staff can do to influence a person’s prevailing bio-behavioural status. For example, they can interact with the person in a positive social–communicative exchange (for example, talk to them), or engage the person in a preferred activity (for example, play with them). Another strategy that may help to shift the person to a more alert bio-behavioral state is to give them access to preferred objects and activities. Generally, the type and amount of activity and social interaction can influence a person’s state. Staff should investigate what types of activities and interactions are likely to maintain the person in an alert state. The types of activities and interactions that are likely to maintain a person in an optimal state will vary from one person to another, and from one occasion to another. Thus, it is impossible to say to staff that all they need to do is this or that to promote an optimal state for participation. Instead, they need to adopt an attitude of discovery, trying different activities and engaging the person in interactions while monitoring the person’s response. If a positive response is obtained, the procedure was a good one. If the person does not respond, that procedure was not effective and staff should try something else. This requires a flexible approach from staff. There is no cookbook recipe that can be followed. Promoting more optimal bio-behavioral states requires thinking and initiative on the part of staff members. Severe communication impairment A person is said to have a severe communication impairment if their speech is either completely absent or so limited that it cannot meet the person’s communication needs. People with an intellectual disability requiring extensive to pervasive supports nearly always have a severe communication impairment. Most people in this group are unlikely to acquire any appreciable amount of speech, and may benefit from learning to

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communicate using an alternative mode of communication such as manual signs or picture-based communication systems. Until such alternatives are developed, many will have little choice but to use prelinguistic behaviours to communicate. These may include informal gestures, vocalisations, eye contact, facial expressions, reaching and leading. In other cases, people may use inappropriate behaviour (such as aggression, self-injury or tantrums) to communicate (see chapter 7 for more about this). The need to rely on prelinguistic forms for communication can be a problem, both because they can be difficult for staff to interpret and because the behaviours may be socially inappropriate, or socially stigmatising. Consequently, an important priority in community services for people with an intellectual disability who require extensive to pervasive supports is to enhance their ability to communicate with others in the community. Light and Binger (1998) suggest that one of the main goals of services for such people is to teach them to use a system of communication that will lead to improved social interactions and increased community participation. Staff in community-based services therefore need to know how to teach communication skills to these people, and to use a system that other people in the community will be able to understand. Communication is empowering. So people requiring extensive to pervasive supports may need to be taught alternative methods of communicating. See Light and Binger (1998) and Schlosser (2003) for some excellent examples of communication intervention. The need for intensive services People with an intellectual disability are considered to have extensive to pervasive support needs if the severity of the impairments experienced is associated with a profound loss of functioning in major areas of adaptive behaviour functioning (such as self-care, communication, socialisation, community living and recreation/leisure). This terminology and approach to defining and classifying people is consistent with the 2002 system advocated by the AAMR. In this system (Luckasson et al., 2002), the aim is to describe individual strengths and limitations along several dimensions or areas of competence, including: • home living • community living

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• lifelong learning • employment • health and safety • social interaction • protection and advocacy. Generally, people with severe to profound intellectual disability have substantial deficits in each of these areas. They will require extensive support from others over a long period of time if they are to participate, even partially, in day-to-day activities. Some people may never become independent in dressing, washing or feeding themselves, for example, because they simply cannot perform the required motor actions. This may seem like an argument against trying to provide any type of support to teach the person to participate in these activities. Why bother trying to teach the person dressing skills, for example, if the person will never become independent? However, there is a middle ground here that is worth considering. The aim of intervention need not be complete independence, but rather partial participation. An important concept in relation to this aim is that of active support. The aim of active support is to increase the participation of people in meaningful activity, especially if they have extensive and pervasive support needs. A person might be taught to participate in some aspect of a dressing routine (such as choosing what to wear) even though they may never be completely independent in that routine. Quality of life for people requiring extensive to pervasive supports can be improved by enabling them to participate at least partially in the activities of daily life even though complete independence may be unrealistic. In addition to being extensive and pervasive, the support needs of such people are also likely to change over time as developmental processes occur and medical conditions change. In short, because of their extensive to pervasive support needs, these people require more than the mere opportunity to participate in the community, and more than mere placement in the community if they are to succeed. Specifically, in addition to opportunity and placement, they need an extensive amount of ongoing support, which must be targeted towards addressing the numerous and complex needs that each person will have to some degree. The hoped-for

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outcome is the person’s fuller participation in the wide range of daily activities. An important question, therefore, is how to identify the services that a particular person is likely to require. At this point it may be helpful to briefly review some of the historical trends that provide the background to contemporary communitybased services for people with an intellectual disability who require extensive to pervasive supports.

Historical trends and background Forty years ago in Australia (as in most countries), high-quality community-based services for adults with an intellectual disability were rare. This was especially true for people who had the most severe disabilities, and who required extensive to pervasive levels of support. Instead, such people were often concentrated in large residential or institutional settings, where services primarily focused on supervision and daily care (such as feeding, dressing and toileting). Over the years, the services provided in some institutions were expanded to include more active supports focused on teaching self-care, communication, social skills, community living and recreational skills. Thompson and Grabowski (1977) described one of the earliest attempts to develop better support in a large American institution. Their work in institutional settings demonstrated that even people with the most severe disabilities could learn to participate more successfully in a range of daily living, self-care, leisure and vocational activities. Since then, there have been numerous replications of this approach. As a result there is now a large and reliable body of knowledge demonstrating that people with an intellectual disability, even those with the most severe disabilities, can benefit from active support programming. The aim of this programming is to increase the person’s participation in the activities and interactions that comprise daily life in the community. The development of effective procedures for teaching people with complex needs has helped to improve quality of life and the realisation of the goals of community inclusion described in chapter 3. Duker, Didden and Sigafoos (2004) reviewed and described a number of the most effective teaching procedures, including most-to-least prompting, least-to-most prompting, graduated guidance, time-delay and task analysis. These and other procedures based on empiricallyvalidated principles of learning have been used with success in

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teaching a range of daily living, self-care, communication and social skills to people with severe intellectual and related developmental disabilities. Staff must be familiar with and gain experience in using these types of procedures if they are to provide effective support to people with an intellectual disability. Over the last four decades, numerous efforts to provide for the needs of people with an intellectual disability have demonstrated the superiority of community-based services. While the provision of community-based services was once a bold adventure into uncharted terrain, considerable evidence shows that even people with the most severe disabilities can learn new skills and can benefit from communitybased services (Matson & Mulick, 1991; Young, Sigafoos, Suttie, Ashman & Grevell, 1998).

Identifying and prioritising support goals Support goals, and the types of assistance required to achieve these goals, are best identified by undertaking a systematic assessment of the person’s skills and needs in relation to the demands of their environment. This section describes two types of assessments that can be used to identify support goals. The first assessment approach involves the use of adaptive behaviour rating scales. The second involves the use of an ecological inventory process. These two types of assessment are discussed here because each has been described in the professional literature and is widely used in community-based services for people with an intellectual disability. However, there are other useful assessment approaches. Matson (2004), for example, has published an impressive summary of assessment issues relevant to adults with autism and related developmental disorders, while Thompson et al. (2003) have published an assessment tool specifically geared towards identifying the intensity of support required for a person to participate in meaningful activities in home, work and community environments. Adaptive behaviour rating scales Service providers should undertake at least an annual assessment of a person’s support needs, and an assessment of adaptive behaviour can assist in this process. Three of the more commonly used devices for assessing adaptive behaviour in people with an intellectual disability are summarised in box 6.2. These and other types of formal

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adaptive behaviour measures have the advantage of providing a comprehensive and standardised assessment of a person’s strengths and needs across a range of areas (for example, daily living, community living, communication, socialisation and motor development). A potential disadvantage of using such formal measures of adaptive behaviour is that the information is only as good at the informant who completes the ratings. In some cases, the informant may

BOX 6.2 • THREE COMMON ASSESSMENT TOOLS A variety of tools are available to assess adaptive behaviours and service needs for people who require extensive to pervasive supports. Three commonly used assessment instruments are discussed below. ADAPTIVE BEHAVIOR SCALES–RESIDENTIAL & COMMUNITY (ABS–RC:2)

The AAMR’s ABS–RC:2 (Nihira, Leland & Lambert, 1993) is used to assess adaptive behaviour functioning in people with an intellectual disability. The instrument includes items to assess the person’s level of independence across a range of domains, including self-care, academic skills (for example reading, writing) communication and economic selfsufficiency. It is widely used, and can assist staff in developing instructional objectives to address needs in adaptive behaviour functioning. INVENTORY FOR CLIENT AND AGENCY PLANNING (ICAP)

The ICAP (Bruininks, Hill, Weatherman & Woodcock, 1986) can be used to measure adaptive and maladaptive behaviour in people with developmental disabilities, including people who require extensive to pervasive supports. The instrument includes items that seek to determine the type and amount of support a person needs. This includes home-based services for young children, training in the area of special education and vocational skills for school-aged children and the development of residential services (such as personal care attendants, group homes and nursing homes) for adults. The device is particularly helpful in predicting the intensity of service the person requires. VINELAND ADAPTIVE BEHAVIOR SCALES (VABS)

The VABS (Sparrow et al., 1984) provides an assessment of adaptive behaviour functioning across four domains: communication, daily living skills, socialisation and motor skills. It also includes items to assess a variety of problem behaviours. There are versions appropriate for adults with extensive to pervasive support needs who are living in community facilities. The VABS is completed by interviewing an informant who knows the person well. Interviews can be completed in 20 to 60 minutes, or in 60 to 90 minutes for the expanded edition. The normative sample included 3000 people, and the device is reported to have good reliability and validity.

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be unable to determine whether or not, or how well, the person can perform the skills being assessed. Another potential problem with standardised assessments (in which information is sought from an informant rather than through direct observations) is that such third-party ratings could underestimate a person’s actual abilities, especially if the person has had little opportunity to demonstrate some of the skills being assessed. A deficit identified in a standardised assessment may also lack ecological validity in the sense that the person’s environment or circumstances are such that the skill in question is not required or relevant. It may therefore be useful to supplement more formal measures of adaptive behaviour with informal, yet systematic, assessments that are based on direct observation of the person’s performance. Ecological inventories One type of informal assessment approach is known as an ecological inventory. Baine (1980) explained that the major purpose of an ecological inventory is to identify the skills that must be taught in order for the perFIGURE 6.1 STEPS IN CONDUCTING AN ECOLOGICAL INVENTORY

Step 1: List the environments • home • warehouse • community

Step 2: List the sub-environments • kitchen • bathroom • living room

Step 3: List the activities • preparing a meal • loading dishwasher • setting table

Step 4: Discrepancy analysis

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son to participate in various environments. The ecological inventory is not only an assessment of the person’s skills, therefore, but is also an assessment of the demands of the environments that the person enters. Developing an ecological inventory involves a number of discrete steps, which are outlined in figure 6.1. Step 1 List the environments

The first step of the ecological inventory process is to list the current and future environments that are relevant to the person. The process works best if you begin by listing all the environments or places that the person goes to on a regular basis, or is likely to go to in the future. For example, the community-based group home where the person currently lives is obviously a place where they will spend a great deal of time. The place where the person works – a warehouse, for example – is listed, as is the place where they receive day services. You should also list the community environments that the person uses (for example the supermarket, corner shop or local park). It is best to be as specific as possible at this step. Instead of writing ‘corner shop’ as a community environment, for example, name the particular shop that the person uses (for example, ‘the fruit shop on Ocean Avenue’). Future environments should also be considered. For example, if there are plans for the person to live in a city unit with live-in support staff, it is important to list this future environment. This is so the support program can include goals to teach the person the skills needed to function there. Step 2 List the sub-environments

The next step is to list the sub-environments associated with each of the environments listed in step 1. The average community-based home, for example, has a number of sub-environments including a kitchen, a bathroom, bedrooms and a living room. The person’s place of employment will also have several sub-environments, for example, a main office, reception area, staff room and a main working area. Many community locations also have sub-environments, such as the various departments (dairy, meat, deli and so on) in the supermarket. Step 3 Identify the activities

The next step involves listing the activities that typically occur in

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each sub-environment. As shown in figure 6.1, the kitchen is the likely location where food is prepared, dishes washed and put away, and meals eaten. Increasing participation in the activities that typically occur in each sub-environment can be viewed as a primary aim of the support program. Step 4 Conduct the discrepancy analysis

Given the aim of increasing participation in the activities that typically occur in each sub-environment, the final step requires an assessment of how well the person can perform these activities. If the person does not know how to prepare a meal, this may become an important skill to target for instruction. Acquiring the skill may enable the person to participate more competently in this sub-environment. Similarly, there may be a discrepancy between the demands of the environment (for example, the need to prepare a cup of tea during a break at work) and the person’s skills. One potential goal, then, would be for the person to learn how to make a cup of tea during their break. Assessing the difference between what the environment demands and what the person can do is known as a discrepancy analysis. This analysis is best done by providing opportunities for the person to perform the skill and recording how many steps of the task the person can complete independently. Box 6.3 gives an example of a discrepancy analysis. Using assessment data for program planning Regardless of the assessment approach taken, it is important to remember that one of the main reasons for undertaking such assessments in the first place is to identify individual strengths and needs. An assessment of adaptive behaviours may identify deficits in skills related to eating, dressing, communication and social skills, for example, that could then be targeted for improvement through active support programming. That is, once the assessment has been completed, programs can be developed and implemented to teach the person the skills they need to function more effectively in their home, work and community environments. Once a need has been targeted in the individual plan, the team must determine what types and levels of support are required in order to meet that need. That is, what will it take to address the need noted in the assessment? Consider the case study of Jim in box 6.4.

People with extensive to pervasive support needs

BOX 6.3 • SHARON’S STORY Sharon is a 26-year-old woman with severe intellectual disability. She lives in a group home with a peer and receives 24-hour support from staff trained in providing support. One of the sub-environments in the home is the living room. In the evening, after dinner and after the dishes have been cleared, Sharon likes to watch movies on DVD, and would like to operate the DVD player herself. An initial assessment is conducted to determine whether Sharon could do any of the steps of the task. The staff broke the task into the ten steps shown in table 6.2. TABLE 6.2 TASK ANALYSIS AND INITIAL ASSESSMENT: OPERATING A DVD PLAYER Opportunity Step 1 Turn on the power to DVD player 2 Press ‘open’ 3 Remove DVD from case 4 Insert DVD into player 5 Press ‘close’ 6 Select ‘play movie’ 7 When finished, eject DVD 8 Return DVD to case 9 Press ‘close’ 10 Turn the power off Percentage correct

Day 1 (4/9) – – + + – – – + – – 30%

Day 2 (5/9) Day 3 (6/9) – – + + – – – + – – 30%

– – + + – – – + – – 30%

Scoring key: – = incorrect or no attempt made, + = correct/independent

Once the task had been broken into steps, Sharon was given the opportunity to operate the DVD player while staff observed and recorded how many of the steps she could do by herself. The assessment was conducted over a three-day period in September. For each opportunity, Sharon was given a DVD in its case, brought to the living room and asked to ‘play the movie.’ She was then given ten seconds during which staff recorded whether or not she completed a step of the task. If she did not complete a step independently, the staff person completed the step and asked Sharon ‘what’s next?’ This allowed the staff to examine her skills in relation to each step of the task. At the end of the three-day assessment, it was clear that Sharon was only able to complete three of the ten steps (30 per cent). It was therefore decided that training would be needed to teach Sharon how to do the other steps of the task. In this way, staff made use of the assessment data to identify a new skill that would enable Sharon to function more independently in a highly preferred activity that was appropriate to the sub-environment of the living room.

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BOX 6.4 • JIM’S PROGRAM PLANNING Jim was a 32-year-old man with severe intellectual disability and ‘autistic-like’ behaviour. He lived in a group home in the community with three other young adults. A new caseworker, reviewing the results of his most recent adaptive behaviour assessment, was surprised to learn that Jim was unable to use the toilet independently. Given that he had made progress over the years in learning other adaptive skills (for example, putting on his pants, pouring a glass of juice), the caseworker argued that Jim should be taught to use the toilet. The obvious place to do this was in the toilet area in the home. Even though everyone knew this would probably require a lot of intensive effort, no one knew exactly what would be needed or how long it would take. The caseworker’s first task, therefore, was to review the literature on toilet training people with an intellectual disability. She found that there were a large number of studies showing effective procedures for toilet training in this area. She decided to try a procedure called response restriction (Duker, Averink & Melein, 2001), because it had proved effective in assisting people who functioned at a similar level of intellectual disability to Jim. After reading the studies, she realised that if the training were to be successful it would probably require two to three weeks of intensive support from a staff person who was skilled at implementing the procedure. This became the level of support that Jim would require in order to achieve the goal of independent toileting.

People with the most complex needs rarely have just one or two discrete deficits to be addressed, such as a lack of the skills required to operate a DVD player or toileting or dressing skills. They are likely to have numerous needs that could become support priorities. In addition to a lack of toileting independence, Jim’s assessment results in the Vineland Adaptive Behavior Scales revealed needs in the communication, daily living and socialisation domains. In each of these broad domains he lacked a number of specific skills. For example, in the area of daily living skills Jim could not wash his clothes, make his bed, or take a shower. Jim’s is not a unique case – people with an intellectual disability who require extensive to pervasive supports typically have significant and numerous needs. As part of providing good services, it is necessary to decide which skills should be priorities for inclusion as support goals.

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TABLE 6.2 CRITERIA FOR PRIORITISING GOALS (based on Brown et al., 1988) Criterion

Description

1 Increased access

Priority should be given to goals that will enable the person to participate in a wider range of typical environments and sub-environments. Priority should be given to goals that focus on teaching useful skills that the person will need in order to participate in typical home, work and community settings. Priority should be given to teaching the skills that people of a similar age, without a disability, would be expected to demonstrate in typical environments and sub-environments. Priority should be given to skills for which there will be frequent need and opportunities across a range of environments and sub-environments. Priority should be given to skills that will enable the person to access preferred objects and activities. Priority should be given to goals that will facilitate the person’s health, fitness and well-being. Priority should be given to goals that will facilitate the person’s social interactions with peers without a disability in the community. Priority should be given to skills that will enhance the person’s status and create a valued social role for them.

2 Functionality

3 Ageappropriateness 4 Opportunity

6 Preference 7 Lifestyle 8 Inclusion

9 Status

Setting priorities When writing an individual plan, it is often useful to begin by focusing on three or four specific goals. Generally it is difficult to work on teaching more than four new skills at any one time. Once the person begins to make progress, additional goals can be written into the plan. Because people with an intellectual disability who require extensive to pervasive supports have many needs and may learn new skills slowly, it is important to make sure that the goals included in the plan are the most important ones. The prioritisation of goals is usually completed by a team of people, including parents and caregivers, the person with a disability, support staff, the case manager and other professionals (for example, a behaviour analyst, a psychologist, a speech/language pathologist or an occupational therapist). Brown et al. (1988) argued that the factors listed in table 6.2 should be considered when prioritising goals. That is, goals that address several of the criteria described in the table would be high priorities. By following the general guidelines outlined in this table,

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it is more likely that the person’s individual plan will facilitate access to and participation in the community and lead to meaningful improvements in quality of life. Implementing individual plans and providing active support Community-based services for people with an intellectual disability are often guided in part by an individual plan. The plan is a written document that is typically developed on an annual basis and reviewed at regular intervals. The support team, consisting of the person with a disability, their family members and relevant professionals, develops the plan after reviewing assessment data and determining the services needed to enhance the person’s quality of life. As discussed in chapter 5, plans should set out the priorities for providing support or for building individual capacity and involvement in meaningful activities. These activities should be consistent with the preferences and aspirations of the person and their family. Activities become the context for the development of skill development programs. Staff can support the person on a day-to-day basis through the basic principles of active support. Implementing the program

Once priority goals and objectives have been written, a detailed plan is developed that specifies when, where and how the goals and objectives will be addressed. The planning team is responsible for developing the plan. Direct-care staff will be heavily involved in its day-to-day implementation, given their close contact with the person with a disability. Implementation involves creating opportunities for the activity to occur in the appropriate sub-environment, then following the instructional strategies developed to teach the skills associated with the activity. It is in the implementation of the plan that the concept of personcentered active support is most important (Felce, 2004). This concept is associated with the position that effective implementation depends on the extent to which staff make use of every opportunity to promote participation rather than just implementing the plan during structured skill development programs. Research into the support of people with an intellectual disability has lead to the development of procedures for effective teaching.

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Duker et al. (2004) have reviewed a number of the commonly used instructional procedures listed on page 153. Evaluation and modification The approach revolves around an initial set of priority goals. Remember that these goals are identified from prior adaptive behaviour and ecological assessments. The criteria listed in table 6.3 are used to select priority goals. Next, objectives that reference observable and measurable behaviours are written. A written plan that specifies the instructional procedures is then developed and implemented by staff. As the procedures are implemented it is important to evaluate progress by undertaking direct observations of the person’s performance on a regular basis (at least every one or two weeks). If the person is not making progress, it could signal the need to modify the plan. For example, perhaps one or more aspects of the instructional procedures need to be changed to better suit the person’s learning and behavioural characteristics. It may be necessary to identify more effective reinforcers or use more intrusive prompting procedures. In other cases, lack of progress could indicate that the task needs to be adapted to make it easier for the person to learn. A major part of supporting people with an intellectual disability in community-based services revolves around the approach outlined in table 6.2. Systematic programming of this type is an indicator of the quality of community-based services for people with an intellectual disability who require extensive to pervasive supports.

Current best practice in the provision of community-based services A comprehensive community service involves more than the implementation of instructional procedures to achieve individual planning goals. That is, while there may be set times when active programming is implemented to achieve specific individual planning goals, there are also many other times when the person will need support in order to participate in activities. For example, while the person may not have a specific goal to access community services and events such as getting a haircut, shopping for groceries, or attending a concert in the park, they should still have opportunities to participate in such activities. Community services must not only

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involve the systematic implementation of active support, but also facilitate community inclusion and aim to enhance the person’s overall quality of life. Community-based services also require that a few essential prerequisite conditions be met when writing objectives for the individual plan (see table 6.3). TABLE 6.3 COMPONENTS OF A GOOD BEHAVIOURAL OBJECTIVE Component

Description

1 ‘Observable & measurable’

The objective should reference an observable and measurable behaviour. A behaviour is observable when someone can see it or hear it. Examples of observable behaviours include producing the manual sign for HELP, opening a bottle of water, making toast, brushing teeth, making the bed, putting address labels on envelops, and buying a cup of coffee. In many cases, the objective will include a number of skills. Operating a DVD player, for example, requires a number of behaviours as shown in table 6.2. The objective should specify the conditions under which the behaviour is expected to occur. This might include details about where and when, and the materials involved. For example, the person may need to learn to ask for help, but this behaviour should occur only when help is actually needed. It is important to specify conditions because this is when staff will implement the associated support procedures. It is also important to indicate where and when the activity is to occur so that staff know when it is appropriate for the person to initiate the activity. The objective should include a clear statement of performance criteria that will enable staff to determine when the objective has been achieved. Sharon, for example, was required to achieve a score of 100% correct over a 2-week period in order to demonstrate that she had mastered the objective.

2 Conditions

3 Criteria

Prerequisite conditions Several basic conditions must be met in any community-based service for people with an intellectual disability. These conditions reflect the bare minimum of quality: • People must be supported to maintain their health. This includes regular health check-ups, a healthy and balanced diet and opportunities for regular exercise.

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• The physical environmental must be in good repair, with appropriate furnishings. • Each person must have appropriate clothing. • Caring people who are skilled in providing support services must staff the service. Staff must know how to provide opportunities for choice-making, encourage participation and provide opportunities for residents to engage in meaningful community-based activities. While these four aspects are essential, much more is needed to ensure a good quality service. Program quality indicators Crimmins and his colleagues (2002) have identified a number of program quality indicators in services for people with developmental disabilities. Program quality indicators refer to specific aspects of a service considered to be important components of quality. Some of the indicators most relevant to community-based services for people who require extensive to pervasive supports are described in table 6.4. A high quality program can be identified by the extent to which, in addition to implementing active support programs to address priority goals, it reflects these indicators. TABLE 6.4 DESCRIPTION OF RELEVANT PROGRAM QUALITY INDICATORS (based on Crimmins et al., 2002) Indicator

Description

1 Assessment The service should undertake regular assessments geared towards identifying individual support needs. Assessment should make use of instruments that are reliable and valid for the intended purpose. 2 Individual An appropriate team should develop, implement and evaluate an planning active support program for each person. Individual plans should focus on enhancing participation in meaningful activities typical of current and future home, work and community environments. 3 Instruction The service should adopt an instructional focus, using empirically validated procedures and data-based evaluation of the person’s progress. 4 Family The service should include regular communication with each support person’s family and provide services needed to facilitate the person’s access to family and community. 5 Inclusion The service should make use of regular community-based services and aim to increase the person’s participation in a larger number of community-based environments and activities. 6 Staff The service should ensure that staff are well trained and have opportunities for professional development.

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Other issues in service provision Effective support requires a considerable amount of expertise and effort on the part of staff. Staff must be consistent and systematic in their provision of services in order to achieve gains in the person’s skills, levels of participation and quality of life. While sensible support programming can lead to these desired outcomes, it does not offer a quick fix or promise miracle cures. Because of this, service providers are sometimes tempted to implement ineffective or unproven treatments that make bold claims and promises. Three alternative therapies that fall into the category of ‘ineffective or unproven’ are discussed below. Staff should be aware that there are many more questionable practices that lack empirical support (see Jacobson, Foxx & Mulick, 2004, for a review). Facilitated communication

Facilitated communication was presented as a technique that allowed people with developmental and physical disabilities to show their unrecognised communicative skills. However, research has shown the procedure to be ineffective (and unethical) (Jacobson, Mulick & Schwartz, 1995). The technique involves a facilitator taking the person’s hand or elbow and moving it to spell out words and sentences on a keyboard or alphabet board. Proponents of facilitated communication claimed that the person with a disability, not the facilitator, was responsible for the resulting messages. However, study after study has demonstrated just the opposite (see Jacobson et al., 1995). In fact, as in the ouija board phenomenon, it was the facilitators who were communicating, not the person with a disability. Facilitated communication is not an effective mode of communication for people with developmental disabilities, and it has no place in community-based services. Fortunately, there is no need to try facilitated communication because there is a range of empirically validated communication interventions for people who require extensive to pervasive supports (Light & Binger, 1998; Schlosser, 2003). Sensory integration

Given the many and complex needs of people who require extensive to pervasive supports, it may be hard to imagine how it is possible to enable them to participate in the community, acquire new skills

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and achieve a more meaningful lifestyle. Some might therefore question whether the active support approach outlined in this chapter has much relevance to people with the most severe disabilities. As a result, staff may be tempted to adopt therapies that appear more relevant to the person’s severe impairments and ‘sensory needs’. One of the more popular examples of such therapies is sensory integration (see Jacobson et al., 2004, and Shaw, 2002, for critical reviews of sensory integration). Sensory integration typically involves the daily use of various procedures such as brushing, rubbing, joint compression and swinging. The theory is that these procedures will help integrate the person’s senses and lead to increased alertness, better interaction and improved motor functioning. Despite widespread use in schools and community-based services for people with a range of developmental disabilities, including people with the most severe disabilities, there is no good scientific evidence that sensory integration has any positive effects (Shaw, 2002). Given the lack of research evidence, some might justify sensory integration on the grounds that the person may enjoy the procedures. This could be the case, but perhaps they only enjoy these activities because the rest of their day is devoid of any meaningful alternatives. A person may enjoy being brushed and spun around, but they may also enjoy going out for a stroll in the park or having a coffee at the local café. Sensory integration activities are not normalised, and may serve to further isolate the person from the community. Getting the person out into the community can also be highly stimulating and enjoyable, and is certainly more likely to promote a better quality of life. In light of the evidence, the conclusion is that sensory integration is not a defensible form of therapy for people with developmental disabilities. Multisensory environments

Another popular ‘therapy’ for people with developmental disabilities is exposure to multisensory environments. This usually involves a room that contains colourful lights, beads hanging from the ceiling, strobe lights, mood music and various other sensory gadgets and equipment. The person is brought into the room maybe once or twice a day to experience these sensory inputs, and this is supposed to be great therapy. As with sensory integration, there is no scientific evidence

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supporting the claim that multisensory environments offer therapeutic benefit (Stephenson, 2002). While some people may enjoy such experiences, they might also enjoy getting out into the real world and experiencing the naturally occurring multisensory inputs that can be found out there on the beach, in the park and everywhere in the community. Why spend hundreds of dollars to outfit a multisensory room when you can take the person outside and provide some real life sensory experiences? Experiencing the community can be a wonderfully enriching sensory experience that has the advantage of being more normalised.

Conclusion The indicators described in table 6.5 can be viewed as a statement of what is considered to be current best practice in community services for people with an intellectual disability. Services that meet these standards to a high degree of quality will be more likely to enhance the quality of life for people who require extensive to pervasive supports. The model of support outlined in this chapter is based on research from the area of behavioural psychology and from the principle of community inclusion. This approach to developing and implementing community-based services emphasises the use of evidence-based intervention procedures (Schlosser 2003). In this model, assessment focuses not only on identifying the person’s strengths and areas of need, but also on the demands of the environment. A team approach is used to identify and prioritise goals and behavioural objectives. Systematic instruction is implemented to achieve the priority objectives, and individual performance data is collected on a regular basis to monitor progress.

Learning activities 1

Explain the term extensive and pervasive supports.

2

Describe the characteristics of people with an intellectual disability who require extensive to pervasive supports.

3

Write a task analysis for a common household task, such as washing clothes, preparing a meal or clearing the table (see table 6.2 for an example).

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4

Draw up an ecological inventory (figure 6.1) for a person who requires extensive to pervasive supports living in the community.

5

Explain the process of prioritising goals for a person who requires extensive to pervasive supports.

6

Using table 6.3 as a guide, write a behavioural objective for teaching a self-care, a community living, a vocational and a recreation skill.

7

Select one of the behavioural objectives you listed in activity 6. Search the literature to find an evidence-based procedure for teaching this skill. Consider how this procedure might need to be modified to suit a person with a severe physical impairment.

8

List some of the major responsibilities of direct-care staff who work in community-based services for people with an intellectual disability who require extensive to pervasive supports.

9

Imagine that you are invited to a new community-based service for people with an intellectual disability who required extensive to pervasive supports. What would you look for to determine whether or not this was a high quality service?

References Ault, M. M., Guy, B., Guess, D., Bashinski, S. & Roberts, S. (1995). Analyzing behavior state and learning environments: Application in instructional settings. Mental Retardation, 33, 304–16. Baine, D. (1980). Curricular and instructional design for early intervention with handicapped children. Mental Retardation Bulletin, 8, 105–21. Brown, L., Shiraga, B., Rogan, P., York, J., Albright, K. Z., McCarthy, E. et al. (1988). The ‘why’ question in programs for people who are severely intellectually disabled. In S. N. Calculator & J. L. Bedrosian (Eds), Communication assessment and intervention for adults with mental retardation (pp. 139–53). Boston. Little, Brown. Bruininks, R. H., Hill, B. K., Weatherman, R. F. & Woodcock, R. (1986). Inventory for client and agency planning. Itasca, IL: Riverside Publishing. Crimmins, D. B., Durand, V. M., Theurer-Kaufman, K. & Everett, J. (2002). Autism program quality indicators. Retrieved December 12, 2002 from . Duker, P., Averink, M. & Melein, L. (2001). Response restriction as a method to establish diurnal bladder control. American Journal of Mental Retardation, 106, 209–15. Duker, P., Didden, R. & Sigafoos, J. (2004). One-to-one training: Instructional procedures for learners with developmental disabilities. Austin, TX: Pro-Ed. Felce, D. (2004). Can person-centered planning fulfill a strategic planning role? Comments on Mansell & Beadle-Brown. Journal of Applied Research in Intellectual Disabilities, 17, 27–30. Jacobson, J. W., Foxx, R. M. & Mulick, J. A. (Eds) (2004). Controversial therapies for developmental disabilities: Fads, fashions, and science in professional practice. Mahwah, NJ: Erlbaum.

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Jacobson, J. W., Mulick, J. A. & Schwartz, A. A. (1995). A history of facilitated communication: Science, pseudoscience, and anti-science. Science Working Group on Facilitated Communication. American Psychologist, 50, 750–65. Light, J. C. & Binger, C. (1998). Building communicative competence with individuals who use augmentative and alternative communication. Baltimore: Paul H. Brookes. Luckasson, R. A., Schalock, R. L., Spitalnik, D. M., Spreat, S., Tasse, M., Snell, M. E. et al. (2002). Mental retardation: Definition, classification, and systems of support. Washington, DC: AAMR. Matson, J. L. (Ed.) (2004). Autism in children and adults: Etiology, assessment and intervention. Belmont, CA: Wadsworth. Matson, J. L. & Mulick, J. A. (Eds) (1991). Handbook of mental retardation (2nd edn). New York: Pergamon. McQueen, P. C., Spence, M. W., Garner, J. B., Pereira, L. H. & Windsor, K. (1987). Prevalence of major mental retardation and associated disabilities in the Canadian Maritime provinces. American Journal of Mental Deficiency, 91, 460–6. Nihira, K., Leland, H. & Lambert, N. (1993). AAMR adaptive behavior scales: Residential and community (ABS-RC:2). Austin, TX: Pro-ed. Orelove, F. P., Sobsey, D. & Silberman, R. K. (2004). Educating children with multiple disabilities: A collaborative approach (4th edn). Baltimore: Paul H. Brookes. Schlosser, R. W. (Ed.) (2003). The efficacy of augmentative and alternative communication: Toward evidence-based practice. New York: Academic Press. Shaw, S. R. (2002, October). A look at sensory integration: Promise, possibility and the art of placebo. A school psychologist investigates sensory integration therapies. Retrieved November 29, 2004 from . Sparrow, S. S., Balla, D. A. & Cicchetti, D. V. (1984). Vineland adaptive behavior scales: Expanded form. Circle Pines, MN: American Guidance Service. Stephenson, J. (2002). Characterization of multisensory environments: Why do teachers use them? Journal of Applied Research in Intellectual Disabilities, 15, 73–90. Thompson, J. R., Bryant. B., Campbell, E. M., Craig, E. M., Hughes, C., Rotholz, D. A. et al. (2003). Supports intensity scale. Washington, DC: AAMR. Thompson, T. I. & Grabowski, J. (Eds) (1977). Behavior modification of the mentally retarded (2nd edn). New York: OUP. Woodyatt, G., Marinac, J., Darnell, R., Sigafoos, J. & Halle, J. (in press). Behavior state analysis in Rett syndrome: Continuous data reliability measurement. International Journal of Disability, Development and Education. Young, L., Sigafoos, J., Suttie, J., Ashman, A. & Grevell, P. (1998). Deinstitutionalisation of persons with intellectual disability: A review of Australian studies. Journal of Intellectual & Developmental Disability, 23, 155–70.

7

Positive behaviour supports: issues and practices Michael Arthur-Kelly

Learning objectives After reading this chapter and completing the activities you should be able to: • identify and discuss the key features of positive behaviour support systems, with particular attention to ecological validity, data-based and preventative/positive approaches to challenging behaviours • apply these principles and practices to your work in community services for people with disabilities • identify the contextual factors that support or impede the provision of positive behaviour supports • reflect on ways to improve your own practices in the provision of behaviour supports.

Introduction A central goal for staff working in community disability services is developing, maintaining and generalising the adaptive behaviour of the people they support. Unfortunately, for a variety of reasons, challenging behaviours can severely compromise the achievement of this goal and reduce a person’s ability to participate fully in the life of their community. Dealing with such behaviours can also become a major stressor for staff.

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Challenging behaviours can be considered as extreme, entrenched antisocial or inappropriate acts that reduce the likelihood of full participation in the community by the person demonstrating them. Challenging behaviours such as self-injury, self-stimulation and aggression may also significantly interfere with the quality of life of others in the immediate situation. Such behaviours can be subtle and complex, or very obvious and confronting. Challenging behaviours need to be evaluated in terms not only of what they look like, but of why they occur. The behaviours may be active or passive – both what a person actively does (for example, hit out or abscond) and their passive behaviour (for example, avoiding social contact or withdrawing) may be viewed as challenging. Further, behaviours that achieve an internalising function, as well as those that are externalised, can be considered challenging. For example, a person may withdraw and shut down social interactions in order to calm themselves because what is going on around them is unsettling – they are using this strategy to regulate their physical and emotional processes. Another person may display very aggressive behaviour to achieve the same goal, or to reduce the pressure to engage with anybody in the unsettling situation. Or they may display challenging behaviours to actually draw attention to themselves. A question arises here: to whom are these behaviours challenging, and why? For example, a person who rocks to and fro incessantly, in order (it is hypothesised) to achieve an internal sense of equilibrium (homeostatic balance) may be considered to be engaging in challenging behaviour. King-hitting the nearest person as a form of greeting may be regarded as challenging in the extreme. How do such behaviours arise, and what are the risk factors for the development of challenging behaviour to the person themselves and those around them? Although our understanding in this area is incomplete, it appears that an interplay of factors in the life of each person provides a platform for the development of behavioural repertoires. Broad environmental issues (for example, how much stimulation is available in a particular setting), specific life experiences (for example, the types of daily tasks the person is presented with), and medical and biological considerations (for example, physical pain) all may play a part in the process (Sigafoos, Arthur & O’Reilly, 2003). This chapter discusses the practical procedures that can be followed to maximise the adaptive involvement of people with devel-

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opmental disabilities who exhibit challenging behaviours. A key to achieving this goal is to understand what may be contributing to the person’s challenging behaviours. It is here that the positive behaviour support approach (see below) can make an important contribution. One of the questions this approach asks is: what can be done to build skills and enhance the social engagement of people who have a history of isolation or difficulty across the various situations in which they function?

Positive behaviour supports Few would argue that the management of challenging behaviours, in all their forms, represents one of the most demanding, complex and intense tasks facing those working in community disability services. It has been suggested that between 15 and 17 per cent of people with developmental disabilities demonstrate challenging behaviours – although it is important to recognise variations in prevalence estimates reported in the literature (Sigafoos et al., 2003). Significantly, some research has indicated that the potential for engagement in problematic behaviours by people with an intellectual disability living in the community does not reduce as they get older (Davidson et al. 1999). There has been considerable debate and unease in the disability sector about the term ‘challenging behaviour’, especially in relation to social constructions of what constitutes acceptable and unacceptable behaviour. Lowe and Felce (1995), for example, note that the question of whether a behaviour is considered to be challenging depends on the perspective of those present at the time, and their ability to deal with the behaviour, or its consequences, not simply the demonstrated act. This point complements the central theme of ecological validity inherent in positive behaviour support, to be explored a little later in the chapter. For our purposes, ecological validity refers to the degree to which the supports provided are real and authentic for a person in their particular life circumstances. There is little point in going to great trouble to help a person with a disability in some aspect of their life if they are not able to benefit from that support in a meaningful way. Positive behaviour support is about effecting lifestyle changes that make sense to the person for whom they are designed, and that can be sustained in the various contexts of daily living.

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Defining positive behaviour supports The process of ensuring positive supports for a person with antisocial behaviours is complex and dynamic, and derives from the lessons learnt from applied behaviour analysis, person-centred approaches and the development of normalisation/inclusion principles and strategies over the past few decades (Carr et al., 2002). These authors note that the primary goal of PBS [positive behaviour support] is to help an individual change his or her lifestyle in a direction that gives all relevant stakeholders … the opportunity to perceive and to enjoy an improved quality of life. (p. 5)

They go on to note the related importance of reducing or eliminating altogether the problem behaviour that was affecting quality of life for such people and those around them in the first place. To achieve such change it is necessary to understand the many factors that may combine to produce or maintain problem behaviours, including, among other things: • personal characteristics • the nature of interactions with others • caregiver skills • the characteristics of physical settings. Horner (2000, p. 97) put it succinctly when he stated that ‘fixing environments, not people’ is the main focus of positive behaviour support. Positive behaviour support provides a framework for understanding what a person does, in context, and why they do it, and then attempts to promote skill development and replace challenging behaviours in everyday situations. This may mean that changes are needed in many parts of a person’s environment, including the type of setting they live in, specific environmental conditions (for example, room size) and lifestyle options (for example, choice-making opportunities in the evening), as well as changes in carer behaviours (for example, waiting longer to receive a response or a choice from a person). Chapter 4 gives an example of changes to the nature of interactions between carers and people with disabilities that highlights the relationship between such changes and the incidence of challenging behaviours.

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By identifying individual needs and tailoring responsive support structures in natural contexts, such as the workplace and home, it is possible to achieve positive changes in quality of life, functional involvement and socially appropriate participation by people with developmental disabilities. The contrast between this comprehensive, positive approach to change and earlier, punitive models of clinical behaviour change should be noted. In the past, the focus was on simply eliminating inappropriate behaviours without providing alternatives to the person concerned. The current view has the double goal of behaviour reduction or prevention, and behaviour replacement, in a supportive context. In other words, positive behaviour support asks: • what skills will be increased as challenging behaviours are being reduced? and • how will these changes be supported?

The model and the process How does the positive behaviour support process occur? Figure 7.1 shows positive behaviour supports considered in the interactive relationship of three domains: • individual functioning, abilities and needs • immediate social contexts • wider social contexts. FIGURE 7.1 A MODEL FOR POSITIVE BEHAVIOUR SUPPORTS IN COMMUNITY DISABILITY SERVICES (adapted from Arthur, 1994)

Individual functioning: abilities and needs

Immediate social contexts

Positive behaviour supports

Wider social contexts

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Individual functioning, abilities and needs In contrast to a traditional focus on what a person cannot do, current models of best practice in the assessment of community support needs emphasise what a person can do, and the level of support needed to help them attain their goals (see, for example, the Supports Intensity Scale published by the AAMR, 2004; chapter 5). The concepts of partial participation, least restrictive environments and normalisation underpin this positive approach to individualised supports. In the individual planning process attention is paid to the functional needs of the person receiving support, in both the short and the long term, as well as their personal preferences and aspirations. Depending on the person’s needs, areas that may be considered include: • physical mobility • communication abilities • daily living skills • diet • medication • medical conditions that affect daily participation. Community-based services use a wide range of assessment tools to identify individual abilities and needs, and plan for the provision of supports. The use of a person-centred approach is integral to the planning process, and facilitates the empowerment of the person by recognising their wishes and opinions (see Holburn & Vietze, 2002; Pearpoint, Forest & O’Brien, 1996). One area that has developed in the past decade out of work done by Guess, Roberts, Siegel-Causey and Rues (1995), Arthur (2004) and others is behaviour state assessment (see page 149). Observational and other data is collected to help staff understand the level of engagement, arousal and involvement of people with very high support needs, including behaviours usually referred to as self-stimulatory or self-injurious. Arthur (2004) reported evidence of a positive relationship between increased communicative and social activity, and preferred behavioural states such as Awake-Active-Alert in schoolaged children with severe and multiple disabilities. These findings, and those of Guess et al. (1995), suggest that understanding a per-

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son’s experiences, and aspects of their functional contexts such as the amount and quality of communication interaction on offer, is central to being able to focus on the provision of personal, meaningful and ongoing supports to that person. Immediate social contexts It is relatively easy to assess a person’s abilities and needs. Understanding the nuances of their various life contexts and their level of involvement on a daily basis is considerably more complex. To do this, we must be able to identify and evaluate both the amount and the nature of social support provided by others. For example, a person with a disability living in a group home in the community with three housemates may need specific personal skills in order to be able to get up in the morning, prepare for and travel to work, contribute appropriately in the work environment, return home, engage in leisure activities, and contribute to the running of the house before retiring to bed. The skills, knowledge and attitudes of peers, family and other personal supports will be critical if the person is to develop these skills and participate as fully as possible. It is vital to recognise the interdependence between someone’s personal needs and what others do to address those needs. For example, if a carer has had a difficult day and is impatient with a person with a disability in the group home that evening, this may have an affect on both of them, and on others. Likewise, if the person receiving support is edgy due to an event that occurred during the day, this may have an affect on their peers, carers and others who interact with them. This point is especially relevant to social behaviours demonstrated at home and in the community. In his analysis of reforms in the UK and elsewhere in the area of residential services for people with disabilities, Felce (1998) argued that developing quality communitybased experiences for a person depends on an understanding of the complex and interactive nature of the support process, including, among other things, available activities and staffing quality (not just quantity), rather than just one factor such as location of the experience. Felce notes that ‘The pursuit of quality in ordinary housing services entails more than just the provision of ordinary environments’ (1998, p.16).

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The same is true for employment and other life opportunities for people with a disability who have challenging behaviours. Stevens and Martin (1999) have developed a multi-component model addressing this issue that walks the user through the steps involved in achieving community-based employment and introducing appropriate supports for people with disabilities, and that recognises the link between meaningful community engagement and pro-social behaviours. Human ecology is inextricably linked both to individual abilities and needs, and to immediate and wider social environments. In the context of community-based support for people with disabilities, this means that staff and family members involved in providing support must be insightful about their own motivations, abilities and needs. Questions that can be asked in a process of self-evaluation include: • Is a positive model of appropriate participation in the home, the workplace and the wider community available to the person? • Are interactions with the person respectful and empowering? • What strategies are in place to develop and maintain social networks? In the past decade, more attention has been paid to the nature of the human supports provided for people with disabilities in their daily life circumstances. This theme is central to the current positive behaviour support literature on best practice. Shaddock (1994) reflects this orientation when he notes that disability services must recognise ‘that it’s all about people’ (p. 302). Brown, Gothelf, Guess and Lehr (1998) discussed the theory and the practice of self-determination and empowerment for people with disabilities, and questioned whether we genuinely provide choices and enable meaningful participation, or simply go through the motions in order to tick a box or satisfy some other accountability requirement. Again, the focus is on human ecologies: what is most important in the life of this valued person, and how can we work alongside them to help them achieve their goals? This leads us to another level: the wider social context of support. Wider social contexts Just as individual abilities and needs and immediate social contexts influence behavioural patterns, so too does the wider social context. If, for example, a person lives in a state or country where there is a

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trend towards or away from care in large or small institutions, this will affect how positive behaviour supports are provided. In one situation, there may be more emphasis on support and education; in another, more emphasis on care and nursing. An example of change at the macro level involves the needs assessment process for the provision of positive behaviour support in the US state of Virginia, which was introduced after an extensive literature review, interviews and several surveys. This large-scale project produced a series of recommendations for the ongoing invigoration of and planning in this state system, centred on staff training priorities (Shannon, Daly, Malatchi, Kvarfordt & Yoder, 2001). Organisational and economic issues, especially those centred around the relationship between money, social policy and actual service delivery, affect the behaviour supports that can be provided. In writing about the disability support situation in the UK, Emerson (1999) raised the question of how to reconcile issues of value for resourcing with individual needs and increasing demand for support. Parmenter (1999), in his challenging critique of the Australian situation, called for acceptance of the ‘communal norm’, or universally accepted standard of support, to ensure equity of provision for all in need. He highlighted the need to shift resource control for the support of people with disabilities away from a governmental, economically-driven model and focus instead on individual needs. Interestingly, Parmenter also points to a lack of training to ensure that community-based supports work effectively, a concern explored later in this chapter. Making it happen Figure 7.1 identified the interactive nature of factors that directly and indirectly influence the design and provision of positive behaviour supports for a person living in the community. At this point, you may like to think about a person with a disability with whom you are familiar. With the three aspects of figure 7.1 in mind, consider ways in which the person’s needs and abilities, immediate and wider social contexts combine to shape their daily lives. In some cases, it will be clear that there is a need to provide the person with systematic and personally relevant scaffolds (for example, improving their ability to communicate or giving

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them access to reinforcing and enjoyable activities) to maximise social engagement and participation. This is the central role of the positive behaviour support process. Figure 7.2 shows a step-by-step process for making positive behaviour support happen. FIGURE 7.2 MAKING POSITIVE BEHAVIOUR SUPPORTS HAPPEN – THE BROAD PROCESS

Identify contextual complexities and stakeholders

Conduct functional behavioural assessment

Design and deliver personalised plan for positive behaviour supports

Step 1 Identify contextual complexities and stakeholders

One of the defining features of person-centred planning is recognition of each person’s specific skills, needs and aspirations. As noted earlier, Parmenter (1999), Shaddock (1994) and others have emphasised the importance of empowering people, rather than losing them in an anonymous, financially-focused social support system. The first step in implementing a positive behaviour support approach, then, is to identify: • all the aspects of lifestyle that relate to the person • all the relevant participants or stakeholders in the support process. Established strategies such as the use of ecological inventories and individual service plans, discussed in chapter 5, will usually assist in this task. The case study of Glenda in box 7.1 illustrates this aspect of the support process. Note the settings, people and experiences that are unique for Glenda, and that inform a program of support. Step 2 Conduct a functional behavioral assessment

The use of systematic data and hypotheses generated in a functional behavioural assessment sets the scene for a comprehensive positive behaviour support plan. Although this chapter does not explore the

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mechanics of this approach, it will be helpful to discuss a number of its purposes and strategies. (Functional behavioral assessment is discussed in detail in Sigafoos et al. (2003), and several excellent practitioner manuals are available from the functional behavioral assessment miniweb at www.air.org/cecp, developed by the Center for Effective Collaboration and Practice.)

BOX 7.1 • GLENDA’S STORY Glenda lives with three other people with severe disability in a supported home in the community. Although restricted to a wheelchair for mobility, Glenda is capable of grasping and manipulating items if they are within reach. Without doubt, Glenda’s most challenging behaviours relate to her very low level of motivation and participation in daily routines. A recent individual planning meeting involving Glenda, her parents, friends and staff set a range of goals that focused on Glenda being encouraged to physically engage with materials in the living environment, and sustain communicative involvement with her friends and support workers. Without a lot of prompting, Glenda will watch other people engaging in tasks around her but will not initiate direct engagement. Likewise, Glenda will use a non-symbolic form of communication such as a smile or eye gaze to respond to messages from others, but rarely commences or continues an interaction. Support people who work with Glenda face many challenges. First, and perhaps most important, consistency among those who interact with Glenda is vital in order to break the cycle of passivity and learned helplessness. Second, a systematic plan is needed to reduce Glenda’s reliance on the help of others and to increase her spontaneous involvement in home life and especially one-to-one interactions with friends and others. Finally, Glenda needs help in developing her communication repertoire. This may usefully include augmentative and alternative communication supports, and may target specific forms, functions and contexts of communication in daily life.

As the name suggests, the basic purpose of a functional behavioral assessment is to establish the reason, purpose or function of the antisocial behaviour. The task is more complex than simply collecting observational data using behavioural analytic techniques such as event records or time sample grids (Alberto & Troutman, 2003), although this approach certainly is a platform for the theory and practice of functional behavioral assessment. Having identified and defined the behaviours that are presenting

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difficulties, and collected as much background information as possible, the team gathers data from a variety of sources in order to get a full picture. The team is interested in both the behaviour and the human and physical context within which it occurs, to help them understand more fully why it occurs. Are there particular times, sequences of events, people present or activities engaged in when the behaviour occurs, or does not occur? What events precede and follow the behaviour? The principles of behaviour analysis and ecological analysis inform the use of functional behavioral assessment techniques, and it is vital to recognise the potential influence of broad setting events (for example, what happened last night at home, or changes to medication) as well as identifying what happened before the behaviour (antecedents) and what followed the behaviour (consequences). Data about the behaviour and the environment are collected using many formal and informal means. A selection of techniques is discussed below (the excellent protocols at www.air.org/cecp give more technical information). SCATTERPLOTS

Scatterplots provide a visual map across a day or a week to highlight periods of intensity. To design one, simply divide the overall period of observation into equal intervals (for example, hours of the day), develop a key for target behaviours and record which occurred in each interval. It may be helpful to distribute observations across the day, activities, levels of staff involvement, and so on. The patterns identified can then be explored using more traditional observational recording strategies such as interval, time sample or duration recording. ABC CHARTS

ABC charts (antecedent–behaviour–consequence) are helpful for identifying patterns or sequences of behaviour. The observer draws three columns (A, B and C) and writes down the sequence of events as they occur, as fully as possible. Antecedents are events that occur immediately before the behaviour; consequences are events that occur immediately after it. Although time-consuming, ABC charts allow support staff to track what comes before and what follows the behaviours, with a view to intervention through adjustments to these factors.

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INTERVIEWS

Interviews with the person, close friends, family and support staff often prove to be extremely helpful in the task of understanding when, why and under what conditions a person behaves in a particular way. Structured and semi-structured approaches can be used, and respondents sampled from the various domains of a person’s life (for example, home, work, community activities) in order to obtain a representative picture. It is often helpful to begin with openended questions like ‘can you tell me a little about what happens when …?’ More detailed questioning can then focus on areas of interest that emerge in a relaxed interaction. RATING SCALES

Rating scales such as the Motivation Assessment Scale (Durand & Crimmins, 1988) and the Questions About Behavioral Function (Paclawskyj, Matson, Rush, Smalls & Vollmer, 2000) allow people who know the focus person to score behaviour against various criteria. These instruments can be particularly helpful in identifying the purpose of behaviours, including communicative functions such as attention and escape. For example, a person may be asked to estimate the percentage of time that the person with a disability spends avoiding a particular task, such as meal preparation, or trying to gain attention from others. One of the benefits of such scales is that they are usually concise and easy to complete, which is particularly important when a lot of people work with one person. Once a substantial evidence base has been established, conclusions are drawn through a process of analysis sometimes referred to as triangulation. Triangulation simply means interpreting findings from a variety of sources to ensure that the picture developed is as accurate as possible. Common themes are identified, and a hypothesis is generated to explain the behaviour. For example, when asked to get ready to travel to work Debbie runs off, to avoid having to do the task, and to escape work on that day. This hypothesis could be based on direct observations recorded on a scatterplot, the views of support workers using a rating scale and informal interviews with peers. In some cases, it is possible to test the hypothesis by informally setting up particular conditions or adjusting one variable to see if the explanation of behaviour is correct, a little like the formal assessment strategy of functional analysis or analogue trials in which a

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particular variable is adjusted to explore the impact of such a change on demonstrated behaviours (Sigafoos et al. 2003). The web manuals produced by the Center for Effective Collaboration and Practice (1998) suggest that the development of this best-guess conclusion to the functional behavioural assessment process usually addresses three issues: • the surrounding conditions (for example, when a particular event occurs, such as a room unexpectedly filling with unknown people) • what the person does (for example, beginning to hit others nearby) • attempting to identify why the behaviour occurs (for example, to communicate a feeling of over-stimulation and frustration at a major change in the social tone of the room). Once the hypothesis has been developed, it is possible to design and implement a full support plan. Step 3 Design and deliver a personalised plan for positive behaviour support

Usually, a support plan is based directly on the findings of the functional behavioural assessment process. For example, we considered the case of Debbie, who was absconding in order to avoid going to work. Although the methods of documenting the plan and tracking behavioural changes vary from service to service, a few common components can be identified. Any plan must be contextually valid in order to enhance generalisation and maintenance of social skills. The first universal component is the establishment of clear targets for skill improvement, including replacement and reduction behaviours, specified in observable and measurable terms (Alberto & Troutman, 2003). In Debbie’s case, this might involve encouraging her to talk with a staff member regarding her anxiety about going to work (a replacement behaviour). Second, a positive behaviour support plan includes defined and transparent intervention techniques; for example: • using augmentative and alternative communication supports such as photographs or other symbols • changing staff responses • introducing positive preferred consequences that reinforce appropriate behaviours.

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These strategies, informed by the outcomes of the functional behavioural assessment, will target the hypothesised reason for the person’s antisocial behaviours, as well as developing functionally equivalent and more socially appropriate responses that can be encouraged by all support people. For example, if a person is consistently observed king-hitting a peer in his home by way of greeting, planning will necessarily focus on teaching a more suitable greeting, such as waving or hand-shaking, and training staff to reinforce the new skill. Finally, the ongoing collection of data to inform the intervention process and allow evaluation and modification as needed is a vital, and sometimes neglected, aspect of planning and intervention. In the next section, issues that can make or break the introduction and success of a positive behaviour support plan are discussed. Barriers and gateways Although the research literature on the use of positive behaviour supports in community settings is in its infancy, it is possible to identify several underlying factors that can act as either barriers or gateways to best practice. The first factor is the consistency with which positive behaviour support is used by staff. If a person is exposed to a wide range of responses from support workers, or intervention strategies are implemented very loosely, behaviour change will be adversely affected. This concern leads to a second important issue – communication. Much has been written about the pivotal role of functional communication in improving quality of life and life satisfaction for people with a disability (see chapter 6 for a discussion of this). The nature and amount of interpersonal communication between staff and people with a disability must also be considered in planning and implementing behaviour supports. For example, if a person is taught to use a range of manual signs to request attention, or to obtain preferred activities (as an alternative to aggressive behaviours that have achieved the same outcome in the past), but is unable to get a response from support staff, the most logical course of action may be to revert to earlier patterns of inappropriate behaviour. Collaboration, or teaming, is a process that addresses both these issues. Staff teams who work well together communicate effectively

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and achieve consistency in their approach. Where there is no opportunity or inclination for collaboration and consistency, social and communicative processes suffer. The provision of appropriate resources for the establishment of procedures in community-based services that achieve good communication, collaboration and consistency is necessary but not sufficient for supporting people with challenging behaviour. In other words, it is possible to have access to adequate resources, such as regular staff discussion time, without a shared commitment and purpose among staff. The point here is that positive values and attitudes underpin all of our work in community disability services. The case study of Matthew in box 7.2 incorporates aspects of all of the elements involved in providing positive behaviour support discussed earlier. As you read the case study, ask yourself the following questions: • Does the communication by Matthew, by staff, and between Matthew and staff need to change? • Are staff acting consistently? • Are staff collaborating?

Future directions and priorities Without doubt, the development of positive behaviour support models during the past decade has provided a vital platform for improving service supports for people with challenging behaviours. By integrating elements of applied behaviour analysis with concepts of self-determination, individualised person-centred planning and ecological validity, support people can take a preventative and positive approach to reducing and replacing antisocial behaviour. However, there is still much to be done. There is little published information about the use and impact of positive behaviour support in community settings that support people with disabilities in the Australian context, and a large proportion of the international literature relates to the role of positive behaviour support in educational programs for school-aged children (see, for example, Turnbull et al., 2002). Further research is needed to examine the effectiveness of positive behaviour support for adults living in diverse Australian communities, and the skills, perceptions and concerns of the staff

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who work alongside them. More attention could be paid, for example, to the reported professional development needs of these staff, or the impact of a program of staff development on positive behaviour support implementation and outcomes. Analyses of large-scale system outcomes as well as case studies of services using the positive behaviour support model will make a valuable contribution to the knowledge base.

BOX 7.2 • MATTHEW’S STORY Unlike Glenda, Matthew’s challenging behaviours relate to overactivity. Matthew lives in a shared home in the community. He is 28, has severe intellectual disability and is very capable physically. He uses pointing, a selection of photos in a spiral-bound book and facial expressions to get his messages across. Unfortunately, Matthew chooses at times to abscond from his home, and it is this behaviour that is the ongoing focus of planning and support processes. Data collected by staff suggest that Matthew tends to run off when he believes that no-one understands what he is trying to communicate using his gestural and facial behaviours and his photo book. This problem is exacerbated by the location of his home, which is near a busy road. Moving to a different home has been considered in discussions with Matthew’s family. However, it appears that this would upset his routine, and it would mean losing contact with his housemates. Instead, with assistance from a speech pathologist, and with the cooperation of all support staff, a lot of work is going into helping Matthew expand the communicative functions he can use throughout the day. A related goal is improving staff skills in reading Matthew’s complex communications, and acknowledging him before a problem occurs. Attention has also been paid to the nature of Matthew’s home environment. For example, what activities are available during the evenings when Matthew returns from work? Does Matthew feel confident with his tasks and the expectations placed on him? How well do the other residents relate to him?

A recurring theme in the current literature is the importance of the human context in community-based support processes. In an incisive paper, Allen (1999) underlined the importance of recognising personal dispositions and setting events such as emotional states, attitudes and beliefs in both natural and paid carers who

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support people with an intellectual disability. He notes the need for thorough evaluation data, the integration of sometimes disparate approaches, including behavioural, emotional and cognitive perspectives on human behaviour and, especially, more information on how families deal with challenging behaviours in their children or siblings.

Conclusion By conceptualising the needs of a person with challenging behaviours in terms of where, why and how they presently function, and designing intervention supports that are socially valid and systematically implemented, positive behaviour support holds much promise for the development of community supports that are both preventative and proactive in nature. An important theme throughout this chapter has been the emphasis on the interactive effect of personalised, contextualised, systemic and lifestyle changes that promote adaptive participation by people with disabilities in the life of their community.

Learning activities 1

Conduct a web search for sites that are specifically relevant to positive behaviour supports in community disability services. You may also wish to scan relevant journals such as the Journal of Positive Behavior Interventions. As a more general starting point, try the Center for Effective Collaboration and Practice (www.air.org/cecp), the National Technical Assistance Center on Positive Behavioral Interventions and Supports (www.pbis.org), the Rehabilitation Research and Training Centre on Positive Behavior Support (www.rrtcpbs.org) and the Association for Positive Behavior Support (www.apbs.org).

2

Using the case studies in this chapter and the positive behaviour support model and processes discussed, develop possible support plans for Glenda and Matthew.

3

Reflect on the current protocols for behaviour support in your service or system. How consistent are the principles and strategies of these protocols with the elements of positive behaviour support discussed in this chapter?

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4

In your reflections on protocols for behaviour support, what barriers to change do you see, and what may be some gateways to improved practices?

5

Introduce the functional assessment approaches referred to in this chapter (see www.air.org/cecp for helpful manuals) and incorporate your findings into the service/support plan for a person you work with. Alternatively, use one of the case studies provided in this chapter as the basis for a hypothesised support plan, following the steps discussed.

References AAMR see American Association on Mental Retardation Alberto, P. A. & Troutman, A. C. (2003). Applied behavior analysis for teachers (6th edn). Columbus, OH: Merrill. Allen, D. (1999). Mediator analysis: An overview of recent research on carers supporting people with intellectual disability and challenging behaviour. Journal of Intellectual Disability Research, 43, 325–39. American Association on Mental Retardation (2004). Supports Intensity Scale. Washington, DC: AAMR. Arthur, M. (1994). Communication instruction in the 1990s: An overview of future directions. In K. Linfoot (Ed.), Communication strategies for people with developmental disabilities: Issues from theory to practice (pp. 177–97). Sydney/Baltimore: MacLennan & Petty/Paul H. Brookes. Arthur, M. (2004). Patterns amongst behavior states, socio-communicative and activity variables in educational programs for students with profound and multiple disabilities. Journal of Developmental and Physical Disabilities, 16, 125–49. Association for Positive Behavior Support. Retrieved November 12, 2004 from . Brown, F., Gothelf, C. R., Guess, D. & Lehr, D. H. (1998). Self-determination for individuals with the most severe disabilities: Moving beyond chimera. Journal of the Association for Persons with Severe Handicaps, 23, 17–26. Carr, E. G., Dunlap, G., Horner, R. H., Koegel, R. L., Turnbull, A. P., Sailor, W. et al. (2002). Positive behavior support: Evolution of an applied science. Journal of Positive Behavior Interventions, 4, 1, 4–16, 20. Center for Effective Collaboration and Practice (1998). Addressing student problem behavior. Part II: Conducting a behavioral assessment (3rd edn). Retrieved November 12, 2004 from . Davidson, P. W., Houser, K. D., Cain, N. N., Sloane-Reeves, J., Quijano, L., Matons, L. et al. (1999). Characteristics of older adults with intellectual disabilities referred for crisis intervention. Journal of Intellectual Disability Research, 43, 38–46. Durand, V. M. & Crimmins, D. B. (1988). Identifying the variables maintaining selfinjurious behavior. Journal of Autism & Developmental Disorders, 18, 99–117. Emerson, E. (1999). Residential supports for people with intellectual disabilities: Questions and challenges from the UK. Journal of Intellectual & Developmental Disability, 24, 309–19. Felce, D. (1998). The determinants of staff and resident activity in residential services for people with severe intellectual disability: Moving beyond size, building design, location and number of staff. Journal of Intellectual & Developmental Disability, 23, 103–19.

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Guess, D., Roberts, S., Siegel-Causey, E. & Rues, J. (1995). Replication and extended analysis of behavior state, environmental events, and related variables among individuals with profound disabilities. American Journal on Mental Retardation, 100, 36–50. Holburn, S. & Vietze, P. M. (Eds) (2002). Person-centered planning: Changing lives through research. Baltimore: Paul. H. Brookes. Horner, R. H. (2000). Positive behavior supports. Focus on Autism and Other Developmental Disabilities, 15, 2, 97–105. Lowe, K. & Felce, D. (1995). How do carers assess the severity of challenging behaviour? A total population study. Journal of Intellectual Disability Research, 39, 117–29. National Technical Assistance Center on Positive Behavioural Intervention and Supports (PBIS). Retrieved November 12, 2004 from . Paclawskyj, T. R., Matson, J. L., Rush, K. S., Smalls Y & Vollmer T. R. (2000). Questions About Behavioral Function (QABF): A behavioral checklist for functional assessment of aberrant behaviour. Research in Developmental Disabilities, 21, 223–9. Parmenter, T. R. (1999). Implications of social policy for service delivery: The promise and the reality ‘Are we getting real?’. Journal of Intellectual & Developmental Disability, 24, 321–31. Pearpoint, J., Forest, M. & O’Brien, J. (1996). MAPs, Circles of Friends, and PATH: Powerful tools to help build caring communities. In S. Stainback and W. Stainback (Eds), Inclusion: A guide for educators (pp. 67–86). Baltimore: Paul. H. Brookes. Rehabilitation Research and Training Center on Positive Behavior Support. Retrieved November 12, 2004 from . Shaddock, A. (1994). Participation and choice by people with an intellectual disability: From rhetoric to reality. In M. Arthur., R. N. F. Conway. & P. J. Foreman (Eds), Quality and equality in intellectual disability: Proceedings of the 29th ASSID National Conference (pp. 293–304). Newcastle, NSW: ASSID. Shannon, P., Daly, D.C., Malatchi, A., Kvarfordt, C. & Yoder, T. (2001). Capacity for statewide implementation of positive behavior supports: A needs assessment strategy. Journal of Positive Behavior Interventions, 3, 2, 95–100. Sigafoos, J., Arthur, M. & O’Reilly, M. (2003). Challenging behavior and developmental disability. London: Whurr. Stevens, P. & Martin, N. (1999). Supporting individuals with intellectual disability and challenging behaviour in integrated work settings: An overview and a model for service provision. Journal of Intellectual Disability Research, 43, 19–29. Turnbull, A., Edmonson, H., Griggs, P., Wickham, D., Sailor, W., Freeman, R. et al. (2002). A blueprint for schoolwide positive behavior support: Implementation of three components. Exceptional Children, 68, 377–402.

8

Community inclusion: people, not just places John Annison

Learning objectives After reading this chapter and completing the activities you should be able to: • construct strategies to help people achieve greater community inclusion if they desire it • appreciate the importance of developing networks of support to safeguard people with disabilities • identify the potential community resources available to people with disabilities • describe the role of the service worker in ensuring that people with disabilities can become full members of the community.

Introduction People with disabilities have more in common with other people in the community than they have differences. However, for historical and other reasons, they are often socially isolated and on the fringes of community membership. This chapter explores some of the forces working to maintain their isolation, and examines ways in which human service professionals can assist a person with a disability to become a full, participating member of their community, to the extent they wish to do so.

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In the community, but not of it? The current focus on community inclusion for people with disabilities represents a major shift in thinking about service delivery, a significant paradigm change that was introduced to you in chapter 1. Hagner (2000) has identified a number of problems in changing paradigms or ‘coherent ways of seeing the world’ in disability services. Paradigms act as filters on reality – what cannot be described cannot be considered, and what is described in a particular way will be considered from that perspective. For example, for many years European people believed the earth was the centre of the universe and that the sun and stars revolved around the earth, which required astronomers to explain the movement of the planets in such a way as to fit and reinforce this understanding. This makes it difficult for people to conceptualise new ways of looking at the world – Galileo was tried and condemned for teaching that the earth actually revolved around the sun – new ways of doing things, or new approaches to people and the issues surrounding them. For many years disability services laboured under a dominant ‘facilities paradigm’, with its emphasis on places for people (such as sheltered workshops, halfway houses and hostels). This approach also embodied an assumption that the success of any intervention was an indication of the service delivery model’s ‘workability’, while any failure was an indication of a failure in the person concerned (the sheltered workshop model resulted in some people moving on to open employment – the model’s success – while those remaining in the workshops were there because they were unable to be made ‘work-ready’ through training – the person’s failure). In Hagner’s analysis, the facilities paradigm was slowly overtaken by a ‘programs paradigm’, which put less emphasis on places but which lead to people having a ‘programmed existence’ where every aspect of life became a program or, more likely, a ‘special program’. This approach reached its peak in the late 1970s to the mid-1990s, and many of its elements still permeate approaches to service delivery and support today. According to Hagner, we are now shifting to a ‘supports paradigm’, which is characterised by the following key elements: • Individualised participation by people with disabilities in desired community environments is the starting point and context, not

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the goal. Every member of the community is presumed to belong to the community. Inclusion is a central concept. • The provision of supports takes into account the expectation that, as much as possible, adults will exercise the degree of autonomy and choice that is typical in their society. • A combination of supports is used that includes some specialised disability supports but also such options as natural community supports and unpaid supports. The design of supports takes into account concerns about the negative social consequences of clienthood (McKnight, 1980), where a person’s whole life is lived as a client of one or more human services (for example, living in a residential service, going to work at an employment service, using a recreation and leisure service on the weekends) and about over-reliance on one type of support. • There is a clear distinction between life goals, tied to the person, and service goals, tied to a particular service provider. Key life decisions and plans are made independent of available services, then services are brought into the picture as needed to implement the plans made. • Tangible social connections to, and relationships with, other people are seen as an indispensable element of community membership. Historical background In the last fifty years or so, services to people with disabilities have evolved considerably. In Australia, it was not until the late 1940s that parents of children with disabilities began to question the preoccupation with the large congregate care facilities that were (then) the only form of service available from governments. Parents and their supporters began to develop day centres to occupy their sons and daughters and give parents a break from caring for them at home. Initially these day centres were largely self-funded by parents and communities, with governments taking over responsibility for their funding to various degrees from the early 1950s onwards. The move away from large institutions as the only approach to service provision was reinforced by the later work of Goffman (1961), who identified such places as marked by: • a high degree of regimentation and lack of individuality

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• the creation and perpetuation of a significant social distance between staff and residents • a near total rigidity in routine. Around the same time, and as a reaction to the identified nature of institutions, people like Nils Bank-Mikkelsen began to sow the seeds of what became known as normalisation and, later, social role valorisation. Bank-Mikkelsen argued in 1959, in his preamble to a Danish law, for a system of supports and services that ‘[lets] the mentally retarded obtain an existence as close to normal as possible’ (quoted in Nirje, 1999, p. 24). In its initial forms, normalisation encouraged services to turn Goffman’s identification of what was wrong with many services for people with disabilities on its head by making things less regimented, more individualised, reducing social distance and being more flexible. The conceptualisation of what was wrong or harmful about living in a large congregate care facility lead to a number of developments over the next decade that missed the mark, including: • Institutional improvement plans that tinkered with superficial aspects of the facilities, such as providing each person in a 20person dormitory with a different bedspread, chosen by staff. • The development of the accommodation continuum concept (Evans, 1977) with solitary confinement at one end and full, supported living in the community at the other, with (often many) graduated stages between the two that the person had to move along sequentially. This also led to the notion of ‘person readiness’ for the next stage, and of extensive skill checklists that had to be satisfied before any move could occur. • The concept of the least restrictive alternative (Turnbull, 1981), which, coupled with the continuum concept, could be used to justify even the slightest improvement in a person’s circumstances as being the achievement of a desirable goal because it was a less restrictive option than what had previously existed (for example, having a small wardrobe instead of a bedside locker in which to store all your possessions). The fact that the option hailed as an improvement might still fall well short of ideal for the person concerned was less of an issue than it should have been in many cases.

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• People with an intellectual disability began to have a greater physical presence in the community. However, in many cases: –

their presence was fleeting, such as on an afternoon bus trip from the institution that did not stop anywhere, or stopped only briefly while staff purchased refreshments for the passengers before returning to the institution

–

they were accommodated in large groups of 10 to 25 residents in large, often purpose-built hostels that were visually at odds with surrounding suburban housing

–

they were involved in segregated activities (without the option of non-segregated alternatives) such as a Scout troop consisting only of young men with an intellectual disability, or a group of people with disabilities who were assigned three lanes at the far end of the bowling alley during off-peak times for their play.

By the beginning of the 1980s these approaches had broadened in various ways to become slightly more inclusive through the development of community residential unit options, housing five or six people with disabilities, in place of hostels. However, their social interaction with the community was still often marked by being: • very brief • formal or contractual, such as in the limited social exchange that takes place with a shopkeeper when making a purchase • segregated, for example through work enclaves where a group of workers with disabilities performed their tasks in relative isolation from other (non-disabled) workers at the same factory or workplace • apart, such as going to a restaurant in a small group and all dining together • restricted, when outside the community residential unit and away from other residents, to family contact. McKnight (1995) coined the term ‘service-mediated lives’ to describe the situation of people with disabilities who are surrounded by services and human service staff, live in a residential service setting, go to day activities in a day service and spend their leisure time in a

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disability leisure service. Although surrounded by human services and staff, they are essentially cut off from the rest of society and have few or no friends outside their service-mediated existence. Today we are witnessing a further evolution in the lives of people with disabilities and the services supporting them through a recognition of the importance of community inclusion and the facilitation of their full community membership. Full community membership is marked for all of us by reciprocal relationships with a variety of people including family, friends and colleagues. It is also marked by equality with others, as well as mutual respect and recognition of the dignity of the other person. It includes active involvement with, and participation in, community groups, clubs and societies, churches, activities, political parties and so on, to the extent that we wish to engage with such groups. The task for those supporting a person with a disability is to assist them, to the extent that they desire, to build small intentional communities around themselves by ensuring that they: • are physically present in the community • have presence and are recognised by others • participate actively in the community • share a growing interdependence with other community members. Types of relationship Relationships are the cornerstone for successful inclusion. They can be either bridging relationships or bonding relationships (Putnam, 2000). Bonding relationships tend to be few in number, and there is a strong sense of loyalty between the parties to such relationships. This makes bonding relationships inward-looking, and they exclude people outside the group. Family relationships are usually bonding relationships, with the members all sharing a common bond. They play an important, central, but limited, role in almost everyone’s life. Bridging relationships are outward-looking, and they tend to be numerous and inclusive of a broad range of people. They facilitate social exchange and the transactions of life. They go beyond acquaintance, and include people with appropriate experience or expertise who can be consulted or from whom help can be sought on specific issues. As Putnam (2000) has noted, very successful people have a large number of bridging relationships.

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Many people with an intellectual disability have a small number of bonding relationships (often confined to family members and one or two friends), and a limited number of poorly developed and maintained bridging relationships. It is essential that, where required, people with an intellectual disability who do not have well-developed skills in establishing and maintaining bridging relationships are encouraged and supported to develop those relationships. It is important for us all to have enough of both types of relationships to transact the business of life successfully. Support groups and self-help groups are often substitutes for other relationships that are missing in a person’s life. This is commonly the case for people who are disconnected from other, more conventional, social networks. However, these groups are not a replacement for social networks. As Wuthnow (1998) noted, while group members may feel cared for, help each other, and share their intimate problems, the group does not necessarily provide a real sense of community. Instead, it may simply enable people to focus on themselves in the presence of others without any notions of reciprocity binding people together. Wuthnow summarised such associations by stating that: We can imagine that they really substitute for families, neighborhoods, and broader community attachments that demand lifelong commitments, when, in fact, they do not. (p. 6)

My reality, your reality? We tend to take the world around us at face value – that’s the way it is or the way it appears to us. The world is a ‘given’ in our lives, something immutable within which we operate and to which we adapt as required. However, as Berger and Luckmann (1966) have explained, our world has two parts, the physical and the social, and both are, to a large extent, socially constructed. In the physical world we erect buildings, make roads, move mountains, farm, plant and leave a large human imprint. Buildings also have meanings – ‘Look at my house and see how successful I am’, ‘look at my organisation’s building and see how large and important it is’, ‘look at my church with its many embedded symbolic meanings such as the spire pointing to heaven and its shape of the cross when seen from above’. All these meanings are (usually) consciously created by people.

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Likewise, we construct our social world. Language is the primary way of doing this; it allows us to describe things, and we can use it in subtle ways to mask or alter the message. For example, if you accidentally kill your allies in a war you may say they were shot down by ‘friendly fire’, while if you kill innocent bystanders or wreck non-targeted buildings you may call it ‘collateral damage’. Language can be used to vilify certain classes or groups through derogatory terms such as ‘queer’, ‘chink’, ‘pinko’ or ‘scumbag’. Language can also shape the way we conceptualise important aspects of our world. The various definitions of intellectual disability are good examples of this. Earlier definitions characterised intellectual disability as a condition of the person that was incurable. For example, Doll (1941) defined intellectual disability as (1) social incompetence, (2) due to mental subnormality, (3) which has been developmentally arrested, (4) which obtains at maturity, (5) is of constitutional origin and (6) is essentially incurable. (p. 215)

In other words, the condition of intellectual disability was the person’s problem, not society’s, and it was, in essence, a medical condition to be managed by medically-trained staff such as doctors and nurses. Naturally this management took place in large centres that closely resembled public hospitals – the institutions for people with an intellectual disability. Now we conceptualise intellectual disability as being largely socially imposed (Oliver, 1996). Society values intelligence and physical skills. Those who lack such attributes can be considered as less valued than, and lying outside of, the mainstream of society, and their specific needs given a lower priority by that society. At a personal level, consider how much your view of yourself, your family, your social group, your country, has been shaped and influenced by those around you, particularly the significant others in your life such as your parents, siblings and friends. When you were a small child you first experienced how your family did things, where and how you ate meals, what sorts of foods were eaten, the (often unspoken) rules and norms of behaviour in your home. In the absence of prolonged exposure to other households and other ways of doing these things during your very early formative years you developed the idea that not only is this the way we do things here, it is the way things are done everywhere. Elements of this type of

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thinking may continue into adult years and may be seen when people go abroad and spend most of their time in, say, Italy in comparing the way Italians do things with the way those things are done in Australia. Often the comparison, being egocentric, results in a negative judgement for the other country – Australia (my country) does things ‘better’. At a professional level, too, consider how much you shape, influence and even create the reality of the people with an intellectual disability with whom you interact. At a very fundamental level, how do you describe and conceptualise your relationship with them? Do you work with or for the people? do you assist, help or support them? do you exercise power over them? who do they regard as ‘the boss’ in their lives, themselves or others (maybe you)? What messages do you give them? If you are professionally trained as (say) a physiotherapist, you will tend to define people’s needs in physiotherapy terms, thereby justifying your professional involvement in the person’s life. What sort of self-image do you reinforce in people with a disability? ‘I’ll help you with that’ (that is, you cannot do it without my assistance and must wait until I am ready to help you). Is your daily communication with them that of someone who is interested in them and values them as fellow human beings? Do you ask after their day and take a supportive and encouraging interest in the events and people in their lives, in their hopes, dreams and aspirations? Are your interactions short and business-like, confined mainly to instructions (‘Do this, don’t do that’)? Do you largely ignore them in favour of conversing with other staff members? At another level, consider your assumptions and how these might affect the opportunities a person with a disability has to increase their friendship network. Some people have very low expectations for the development of friendships by people with disabilities. In part, these expectations may be built on the false assumption that there are prerequisite social skills such as good speech, notions of exchange and reciprocity and the ability to identify commonalities with the other that a person with a disability lacks, making them incapable of forming or maintaining friendships (Roeher Institute, 1996). Another assumption that can act as a barrier to the formation of relationships is that people without a disability require some form of special training to relate to people who have

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disabilities. Another is that children with disabilities require a separate development context from other children (such as special schooling, intensive programming and segregated leisure options), or make friends more easily ‘with their own kind’ (that is, other children with disabilities). Because of these assumptions, people with disabilities are often deprived of the opportunity of mixing with a range of people with whom they might form relationships. Another assumption that this chapter may dispel is the idea that relationships should be prescribed as a form of social therapy or developed as a program for the person. Human service workers play a significant role in the lives of the people with an intellectual disability with whom they work. It is therefore important for those workers to be acutely aware of their influence and potential reality-shaping power, and to use it wisely and in the best interests of the people they are seeking to assist. They need to be aware of, and sensitive to, the potential for harm, and to build a positive, empowering reality for the person.

Starting with the person Every one of us has gifts that we give to others (Amos, 2004). You may be a happy person, always smiling and always up-beat about the world around you and the people too. This is a gift you bring to others that makes them value you and the time they spend with you. Others have more specific gifts, like the ability to think and write clearly and concisely, or to play a musical instrument very well. In any group task such people may be recognised and valued for these gifts and assigned the role of scribe for the group, or editor of the group’s work, or musician for special gatherings and celebrations. Sometimes a person’s gifts can be difficult to see. This may be because they are hidden under other aspects of the person that you have to know, understand and pass through before the person’s gifts are revealed to you. These masking aspects may include behaviours that seem odd or challenging to the observer, or severe limitations on the person’s ability to express themselves through speech, gesture or movement or to relate to the world around them in a way that is meaningful to others. A person may also hide their gifts because of past experiences. Many people who have used human services have had experiences

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that have encouraged them not to be open with others; to be wary of new people coming into their lives and promising them an exciting and better future; to expect disappointment, rejection, or having others assume control over their lives and make decisions which they do not like but have no opportunity to question, and the consequences of which they cannot avoid. So you need to take the time to get to know each person thoroughly as an individual. You need to understand what has happened in their life up to now, and appreciate how some of their experiences may have hurt them deeply and made them extremely cautious or resistant to trying new things or revealing too much about themselves. You also need to know and understand the person’s dreams, hopes and aspirations, and to discern what their worst nightmares might be; the things they most fear happening to them. And you need to ask others who know the person well what they feel the person brings to their relationship, and what they see as the person’s gifts. These attributes of the person are the basic foundations for person-centred planning in helping the person increase their level of community inclusion and membership, if that is what they desire. As Cummins and Lau (2003) have rightly pointed out, there are a number of rationales justifying greater community inclusion for people with an intellectual disability; only one, however, that ‘integration necessarily confers some tangible benefit to the participant’ (p. 4), can be ethically held. In their analysis of this proposition Cummins and Lau draw attention to the importance of giving equal value to relationships formed between people with an intellectual disability and those formed between a person with an intellectual disability and a person without a disability. It follows from Cummins and Lau’s proposition that beneficial integration can only be defined and recognised as such by the person involved. This requires those who wish to assist, encourage and support the person in increasing their level of community integration, inclusion, membership and participation to take the time to ascertain: • where the person is in regard to their level of achievement in relevant areas of their life, and • whether the person desires a change.

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It also requires sensitivity in determining whether any initial unwillingness to increase levels of community membership and participation is: • a result of repeated past failures in such efforts and an unwillingness to make further attempts • a sign of deep feelings of hurt and rejection stemming from past experiences with family or ‘friends’ • simply due to the fact that the person doesn’t want to do whatever is suggested because it doesn’t appeal to them for any one of a number of other reasons (for example, the person finds it boring). Any attempt to assist and encourage a person to increase their level of community participation and membership must therefore be based on several principles. Specifically, it should: • be individualised • build on the person’s gifts • take a form that is desired by the person • lead to outcomes that are valued by the person • be done at a pace that is comfortable for the person • embrace relationships between people with an intellectual disability as well as relationships with people who do not have an intellectual disability, and not carry with it any particular preference on the part of those assisting the person for activities involving groups of either type. The person you are assisting might be hesitant about meeting new people, going into unfamiliar places and doing unfamiliar things. So there is the question of what sorts of things the person might like to do. Some people simply want to increase their circle of friends. In this situation, the choice of activity through which friendships might develop and grow is less important than the core objective of meeting people. For most people, regardless of their abilities, sharing an activity or an interest with someone else is a good starting point to developing a relationship with that person. The parties have something in common on which to build their relationship. The workplace is a common meeting place for many people, who form friendships with colleagues and socialise with them after work hours. Sporting and social clubs are also good places in which to get to meet people and form friendships.

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In setting the stage for the formation of a friendship, initial impressions are very important. Not everyone is beautiful and charming; however, everyone can be neat, tidy and appropriate in appearance (see box 8.1) and have an acceptable level of personal hygiene, even if this requires some skills training. This is not to advocate for a return to the extensive assessment checklists and highly structured skills-acquisition programs of the past. What is suggested here is a realistic assessment of the minimum essential set of abilities and attributes required to achieve the desired goal.

BOX 8.1 • DRESSING APPROPRIATELY A young man with a mild intellectual disability known to the author was keen to join a ten-pin bowling club but had difficulty being accepted because he got ‘cleaned-up’ for the occasion by putting on a threepiece suit while the other members came along in jeans and tee-shirts. He achieved full membership after he acted on some sensitive advice about dressing more appropriately, according to the group norm.

Having a talent or skill that is valued by others may help the person gain their attention, respect and interest as a precursor to developing some form of relationship with them. It may be as simple as the ability to offer a person a cup of coffee and then make and serve it to them; or, for someone with severe restrictions on their mobility and dexterity, it may be the ability to smile and acknowledge the other person and be interested in them. For some it may be the ability to enjoy the presence and company of others. The trick for anyone seeking to facilitate relationship formation is to identify what it is that the person can bring to the exchange with another and to ensure that they have the opportunity to share their gift. One of the major barriers to the formation of a friendship with anyone, but especially a person with a disability, is often an initial awkwardness or uncertainty about how to react to the person and how the person might react to you. A non-disabled person making a first approach to, say, a person using a wheelchair, may have uncertain expectations of that person. The person has a physical disability – do they also have an intellectual disability? Do they have difficulties with speech – will I be able to understand what they say? Do we have much in common in terms of our life experiences – what will we be able to talk about?

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The successful management of these first few moments of uncertainty and tension or anxiety on the part of both parties is crucial if the relationship is going to have a chance to develop further. This is where a skilled and sensitive facilitator can make all the difference by drawing out aspects of both people that they might share (‘So you broke your leg last year and had to use a wheelchair for six weeks, how easy did you find it to get around?’) (see Miller and Sammons, 1999, for a detailed exploration of people’s reactions to other people with various disabling conditions).

Relationships Relationships are the ‘glue’ of life They are what keep us together as individuals and groups. Relationships enable us to: • experience intimacy, love and affection • feel positive about ourselves and accepted by others • experience companionship and share our different interests with a variety of people • take decisions or initiatives involving an element of risk with the advice, support and encouragement of people we trust • engage with people apart from those who earn money through contact with us (such as shopkeepers, work colleagues, waiters and bar staff) • experience a sense of interdependence with others, gaining support and assistance with issues and problems we encounter • have an ‘ordinary life’ like others in our community and society (Roeher Institute, 1996). As noted earlier, it is important to have both bridging and bonding relationships. Some people have very few bonding relationships in their life. Their family members are all dead or have no interest in them, having effectively abandoned them to the human service system. After experiencing such fundamental rejection, the person may not trust other people enough to form relationships with them, regarding themselves as essentially unlovable. Michael’s story in box 8.2 is an example.

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BOX 8.2 • MICHAEL’S STORY Michael was born with a slight heart defect that required a couple of months of hospital care in order to correct itself. During that period after his birth his mother went off fruit-picking, and made no contact with him and no inquiries concerning his welfare until she turned up unexpectedly at the hospital six months later. The hospital social worker decided that Michael’s mother was not a fit parent and he was made a ward of the state, spending the next eight years in a variety of state welfare facilities and foster homes. He was frequently bullied and picked on by older children in these settings, and was regularly shifted from one foster home to another. At the age of eight he was transferred to a residential service for children with an intellectual disability. Although he spoke to himself, he did not speak to others or respond to them, and he would frequently hit and scold himself. For example, one of the other children dropped and broke a plate at lunchtime, whereupon Michael immediately said, ‘Naughty boy, Michael’, and slapped himself hard on the side of his face. It took all the staff, but particularly one very concerned and caring staff member, six months of reassurance, hugs, and positive experiences and reinforcement before he began to form a relationship with that staff member and to trust her.

Nearly everyone needs at least one bonding relationship in their life – someone to whom they can relate, who they know will accept them and love them regardless of what they have done, or not done, someone who they trust and can confide in and look to for support, if necessary. Sometimes these various roles are distributed across a group of close friends – one is the person you confide in while another is the one who will accept you no matter what, and so on. When they are not familial, bonding relationships tend to form slowly as trust is won and confidence in the other person increases. It is important to recognise the value of bonding relationships and to facilitate their formation by allowing people time together in private, and respecting their preferences for uninterrupted time in each other’s company. While bonding relationships give a secure social and emotional base for many people, it is also important to have a variety of bridging relationships. These relationships are less intimate, less central to one’s self-image and sense of belonging, but they are equally important. They are the relationships that provide answers to many of the questions and issues faced in life. The following illustrates the

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usefulness of bridging relationships: ‘What do I do about getting a rental allowance? I know, I’ll go and ask Bill. Then I have to find out where the Centrelink Office is and Sue knows that so I’ll ask her to take me and show me. Frank will know who to ask for and what to say to them so I will get his help too.’ These informal networks of support and assistance are important to us all, and we rely on them to achieve many of our major and minor goals in life. They can also assist in gaining access to things we want to do, such as joining a social group. You find someone who is a member of the group you wish to join and ask them to tell you about the group, how it operates, what it is like, and how you might join. Often that person will take you along and introduce you to others in the group and be your support within the group until you are established and accepted as a member in your own right. Finding people who can help someone with a disability develop bridging relationships can be very important. Such people themselves form bridging relationships with the person, relationships that will lead to others. Mavis’s story in box 8.3 gives an example.

BOX 8.3 • MAVIS’S STORY Mavis is a lady with an intellectual disability. She has spent most of her life living in congregate care settings with others not of her choosing. She met Jim and Shirley, two non-disabled people, who became friends. Through them she met a group of people wanting to start a small residential community of people with and without disabilities who would live together. Mavis is now an active and included member of that group and has gradually come to rely on the assistance of other members of the group, rather than just Jim and Shirley, to introduce her to new members and to make sure she has transport to the various group outings and other activities.

Working with communities At the broader community level, people with disabilities are as much a part of their local community as anyone else. This means they have the same right to engage in community activities and be included in those activities. It also means that the community should

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be physically accessible to them and that such fundamental aspects as signage for public amenities like toilets should be readily understandable to everyone. Vibrant communities make an effort to ensure that all members are included, or are able to participate, in community activities (Kretzmann & McKnight, 1993). The City of Seattle, in the US, established a Department of Neighborhoods especially to ensure that people with disabilities could be included in their localities, if they wanted to be, as active participants (Department of Neighborhoods, 2000). Working with communities to enable people with disabilities to contribute if they wish to do so may require some initial ‘consciousness-raising’ in relation to the need for things like wheelchair accessible meeting places and accessible public toilets. It may require advocacy at the planning stages of new public works to raise awareness of the needs of people with disabilities who will be future users of the park, garden, hall or other facility being proposed. The community inventory One starting point for working with communities is to find out what there already is in the neighbourhood of the person you want to assist to attain greater community membership and inclusion. One way to do this is to undertake a community inventory (Center for Urban Affairs and Policy Research, 1988 ), by collecting information about all the community options available to a person. This includes options primarily established for people with disabilities – the value of sharing common tasks and the possibility of forming friendships is just as real with other people with disabilities as with nondisabled people. A community inventory can be developed by collecting information from a number of sources. Some useful strategies in compiling a community inventory are discussed below. Local councils

Local councils often have information packages available for people moving into their area, available free of charge at council offices. They typically list local services as well as clubs and associations active in the council area, with names and contact details of representatives of those organisations. Council information packages should also identify churches, schools, public halls, parks and local facilities such as swimming pools.

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It can be useful to visit these places at various times to see what activities take place there, and who uses them. For example, the local church hall might be used as an informal drop-in support centre on Thursdays for new mothers; the church might have an active choir as well as a number of youth groups and a carpet bowls group that meets every Wednesday evening in the hall. Likewise, the local school might have evening classes for the University of the Third Age, or it might conduct a range of adult education classes of an evening. The council package should also have information on services and supports for people with disabilities. Remember, in considering these, that the objective is not to make the person a client of another human service but rather to look for avenues through which the person can increase their range of social activities. A local self-advocacy or citizen advocacy group might be useful; so might a scout or guide group for people with disabilities, if that is what the person you are seeking to assist would like to explore. Local papers

Local newspapers often have news of various groups operating in the district and regular events such as the annual Clean Up Australia day or tree planting days, both of which rely on local volunteers for their success. Such events can be a good way of meeting new people and finding out what other, related activities take place in the community, such as the local branch of Greenpeace or a society for growing native plants. Volunteering

Many community organisations have opportunities for people to become involved as a volunteer. Schools, libraries, hospitals, community amenities such as the Country Fire Authority, sporting and recreation groups, services for people with disabilities and other human services all typically have openings for people to become involved. They offer people valued roles in their community and an opportunity to contribute to the community and to others, as well as the opportunity to meet other people and the chance to develop friendships. Shoultz and Lakin (2001) cite a number of benefits for people both with and without disabilities in volunteering. The phone book

The Yellow Pages telephone directory lists a range of organisations under ‘Clubs and societies’ that may be worth investigating.

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Informal meeting places

Most communities have informal meeting places for various groups. For example, local motorcycling enthusiasts might all meet informally for coffee and a chat at the local motorcycle shop on Saturday mornings. If a person is interested in motorcycles, that would be a great place to hang out and meet people who share that interest, as it was for Robert (see box 8.4).

BOX 8.4 • ROBERT’S STORY Robert, a young man with cerebral palsy, loved motorcycles. The local bikers used to meet every Saturday morning in the town’s motorbike shop to talk and look at the latest bikes in the shop. Bill worked as Robert’s personal care assistant. Bill noticed the informal congregation of bikers in the bike shop and suggested to Robert that he go along one Saturday morning and look at the bikes and spend time in the shop. Bill went with Robert and introduced him to the proprietor of the shop and also got him involved in discussing aspects of various bikes with some of the people there. Robert wanted to go back, so Bill took him each Saturday for several weeks until he was known to the proprietor and some of the bikers. One morning Bill took Robert and made an excuse to leave him in the store for an hour or so while Bill did some other shopping. The proprietor was happy to make sure Robert had a coffee and to assist him if required while Bill was away. Over the next few weeks this situation was repeated, until it reached a stage where Bill would just drop Robert off and pick him up again around lunchtime. Robert got to know the proprietor and the bikers, and was eventually invited to become an honorary member of the local bike club (they had to amend their rules to do this because members of the club had to own a motorbike as a prerequisite to membership). Soon after this Robert was invited to go on some of the club’s day tours as a passenger in a side car and later, after some minor adaptations, as a pillion passenger on a bike. Robert became a key member of the club. On his death from natural causes some two years later, he was buried with full motorcycle club honours.

Tools for growth and change There is no one right way to help a person achieve the degree of community participation they desire. It should be remembered, too, that people with disabilities are just as much an integral part of a community as anyone else, and that community participation may

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quite properly include participation in activities shared by, or with groups of, people with disabilities. As a first step in seeking to assist a person with a disability to become more fully included in their community as a participating member, it is essential to understand the qualities you need as a ‘social guide’ (Ohio Developmental Disabilities Council, 2004). According to the council (p. 11), such people: • do not feel they have to ‘fix’ someone; they see the inherent capacities and gifts in the person regardless of their disability • are already well connected in the interrelationships of community life; they are personally part of the web of community life • strongly believe the community will accept a person with a disability • are very tenacious and do not give in easily; if one group does not accept a person, they keep trying • are committed to the cause of assisting people in becoming part of the citizenship of communities • use a lot of four-letter words like hope, care and love. Having ascertained what you need to bring to the partnership, the next step is to understand what it is the person wants – what they are interested in, and comfortable with, doing. It is not a matter of forcing, coercing or cajoling a person into doing things they would rather not be doing, which would be unethical. Rather, it is a matter of finding out what the person is interested in doing, what they might want to find out more about or try, and then supporting and assisting them to explore the options they have identified for themselves. The role of the person assisting is to act as a bridge-builder, to facilitate, support, counsel and encourage the person with a disability in their endeavours.

Participatory action research A useful method of proceeding is to use an action research approach to working with the person in increasing their community participation and membership; for example, helping the person to become an active member of a social group or sports club. Action research is essentially circular; it involves taking certain actions in a logical sequence and working through a process. What

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follows here is only a brief sketch – a more detailed understanding of action research is required to implement this approach properly. Such a detailed understanding and explanation is beyond the scope of this chapter. As an intending action researcher, you are urged to read the work of Barnes and Mercer (1997), Moore, Beazley and Maelzer (1998), Sample (1996), Stringer (1996) and Whyte (1991) before proceeding. At its simplest, action research is a cyclical process of conscious and attentive looking, then thinking, then acting, before looking once again and repeating the cycle (Stringer 1996). In Stringer’s approach, looking involves gathering relevant information about the situation you are seeking to change and using it to define and describe the situation. The next stage is to think; to explore and analyse what is happening and to hypothesise and draw conclusions and theorise about why things are as they are. The final stage in the cycle is to act. This involves planning what needs to be done, doing it and then evaluating the results, including the outcomes for the people involved. In using an action research approach to assisting a person to increase or deepen their community membership and inclusion, it is important to keep the person concerned at the centre and, as much as possible, in control of the determination of goals and the means used to achieve them, as well as the process itself. This means working with and assisting the person to gather information and analyse the issue they want to address and to develop, implement and evaluate their plan of action.

Conclusion People with an intellectual disability have more things in common with other people than differences. They have the same need for love, friendship, a sense of belonging and a positive self-identity. This requires full community membership and active participation to the extent, and in ways, that the person desires. Others seeking to assist someone to achieve this must act as sensitive guides and facilitators.

Learning activities Choose a person with whom you have regular, preferably daily, contact. If you work in human services this will, ideally, be one of the users of your service.

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1

Over one day of interacting with the person take time at regular intervals (say, every 30 minutes to an hour or, if you can’t manage that, during your tea and meal breaks) to consciously reflect on the nature of your interactions with the person during the preceding period. What was the context of the interaction? What was the overall nature of your conversation with the person – short, specific instructions or directions? a long, general social chat about things of interest to you both? no conversation at all? Consider the ‘message’ embedded in your communication with the person – did it imply ‘I like you and enjoy your company’, or ‘I think you have a lot of ability and the potential to achieve a great deal for yourself’, or ‘You don’t know anything and need me or someone else to be in control of your life and tell you what to do’, or ‘Talking to you is a waste of my time and so I close your interaction with me as soon as I can by telling you I am busy or that I will talk to you later (which I have no intention of doing)’?

2

What is the reality you are shaping for the person through these interactions?

3

How are you encouraging or reinforcing the person to see themselves, and to see you?

4

Draw up a list of all the places the person visits over a typical month and identify what they do at those places and with whom they do it (for example, ten-pin bowling at the local bowling alley on Sunday evenings with four other people from their day service).

5

Do the same for yourself, then compare the places, activities and people you both experience over a typical month.

6

Using the list you compiled in activity 4 (above), review the relationships of the people mentioned to the person you are thinking about. Which are bonding relationships and which are bridging relationships? Comparing your relationships with those experienced by the person you are considering, which of the two of you has the greater variety and number of bridging or bonding relationships? Why is this so?

7

Compile a list of all the available assets in the person’s immediate neighbourhood and community using the suggestions in the community inventory section on page 207. Identify which of

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those community assets your person uses and how often they use them (daily, weekly, monthly, irregularly, rarely, never), and discuss with the person their interest in exploring other, previously unused, neighbourhood assets. 8

At the beginning of this chapter we mentioned the shift from a ‘facilities paradigm’ to a ‘support paradigm’. The former puts the emphasis on places for people with an intellectual disability, while the latter emphasises supporting the person to do what they want to do wherever it takes place. Review the places identified in activity 4. How many of the places used by the person with an intellectual disability are places used predominantly or exclusively by clients of human services, particularly people with an intellectual disability? Compare this with the data describing your own situation.

References Amos, P. (2004). Supporting friendships: One parent’s reflections. TASH Connections, January/February, 4–5. Barnes, C. & Mercer, G. (Eds) (1997). Doing disability research. Leeds: The Disability Press. Berger, P. L. & Luckmann, T. (1966). The social construction of reality: A treatise in the sociology of knowledge. London: Penguin. Center for Urban Affairs and Policy Research (1988). Getting connected: How to find out about groups and organizations in your neighborhood. Evanston, IL: Northwestern University and Department of Rehabilitation Services. Cummins, R. A. & Lau, A. L. D. (2003). Community integration or community exposure? A review and discussion in relation to people with an intellectual disability. Journal of Applied Research in Intellectual Disability, 16, 145–57. Department of Neighbourhoods (2000). Involving all neighbours: Building inclusive communities in Seattle. Seattle, WA: City of Seattle Department of Neighbourhoods. Doll, E. A., (1941). The essentials of an inclusive concept of mental deficiency. American Journal of Mental Deficiency, 46, 214–19. Evans, J. (chairman) (1977). Report of the Victorian Committee on Mental Retardation (Premier’s Report). Melbourne: Government Printer. Goffman, E. (1961). Asylums. New York: Anchor. Hagner, D. (2000). Supporting people as part of the community: Possibilities and prospects for change. In J. Nisbet & D. Hagner, (Eds), Part of the community: Strategies for including everyone (pp. 15–42). Baltimore: Paul H. Brookes. Kretzmann, J. P. & McKnight, J. L. (1993). Building communities from the inside out: A path towards finding and mobilizing a community’s assets. Chicago, IL: ACTA Publications. Miller, N. B. & Sammons, C. C. (1999). Everybody’s different: Understanding and changing our reactions to disabilities. Baltimore: Paul H. Brookes. McKnight, J. (1980). A nation of clients. Public Welfare, 38(4), 15–19. McKnight, J. (1995). The careless society: Community and its counterfeits. New York: Basic Books. Moore, M., Beazley, S. & Maelzer, J. (1998). Researching disability issues. Buckingham, UK: Open University Press.

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Nirje, B. (1999). Formulating the normalization principle. In R. J. Flynn & R. A. Lemay (Eds), A quarter-century of normalization and social role valorization: Evolution and impact (pp. 17–50). Ottawa: University of Ottawa Press. Oliver, M. (1996). Understanding disability: From theory to practice. London: Macmillan. Ohio Developmental Disabilities Council (2004). Making a difference: The art of community connecting. Retrieved January 10, 2004 from . Putnam, R. D. (2000). Bowling alone: The collapse and revival of American community. New York: Simon & Schuster. Roeher Institute. (1996). Disability, community and society: Exploring the links. North York, Ontario: The Roeher Institute. Sample, P. (1996). Beginnings: Participatory action research and adults with developmental disabilities. Disability & Society, 11, 3, 317–32. Shoultz, B. & Lakin, K. C. (2001). Volunteer and service opportunities for people with developmental disabilities. Impact, 14, 2, 2–3. Stringer, E. T. (1996). Action research: A handbook for practitioners. Thousand Oaks, CA: Sage. Turnbull, H. R. (Ed.) (1981). The least restrictive alternative: Principles and practices. Washington, DC: AAMR. Whyte, W. F. (1991). Participatory action research. London: Sage. Wuthnow, R. (1998). Sharing the journey: Support groups and America’s new quest for community. New York: Free Press.

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Legislation and policy Ian Dempsey

Learning objectives After reading this chapter and completing the activities you should be able to: • understand significant international and Australian disability legislation • be aware of the potential of and the limitations of laws to protect the rights of people with a disability • show an appreciation of the manner in which both policy and legislation attempt to put our belief systems into practice • show the ability to interpret organisational policy and understand its impact on practice.

Introduction It may be helpful to begin this part of the book by returning to figure 3.1 on page 53. What we do on a day-to-day basis in disability services (such as supporting people, or attending professional training) is influenced by our beliefs, by laws and by instructions from our employer. That is, workplace practices are influenced both by principles (covered in chapter 3), and by legislation and policies (covered in this chapter). As figure 3.1 shows, and as the introduction to chapter 3 explains in more detail, practice can also have some influence on our beliefs and, in turn, on legislation and policy.

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The two fundamental concepts addressed in this chapter – legislation and policy – should be clarified. The term ‘legislation’ refers to a law or a group of laws. Laws are rules of conduct. For example, the law that specifies the maximum blood alcohol content for drivers is designed to set a limit on a driver’s conduct for the safety of both themselves and others. Failure to follow the law may result in some sanction, such as being charged with a drink-driving offence. Laws reflect related beliefs. In the example, the law reflects the belief that it is immoral to drive a vehicle when you are in a condition where your driving may endanger lives. In many Western countries, laws are passed by the government. In Australia, laws must be passed by both houses of parliament before they become active. In addition, laws may be amended, and they can be replaced by overriding legislation. This often occurs when the original law did not properly address a belief or principle, or when society becomes aware of new issues that are not adequately addressed by the current legislation. An example of this situation is the introduction of legislation in some states requiring a blood alcohol content of zero for holders of a provisional driver’s licence. Policies, while also designed to influence the way we act, are different from laws in that a failure to follow policy does not usually lead to being charged with an offence. Nevertheless, not following policy can have serious consequences for a person, such as being dismissed from employment. A policy is a statement that is designed to guide behaviour. Typically, organisations that employ people develop policies covering a wide range of issues (such as how to apply for leave, how to avoid a conflict of interest, or how to maintain confidentiality for people we support). Policies are also subject to change as the organisation identifies areas where there are gaps and deficiencies in existing policies. This chapter discusses the ways in which legislation and policies influence how we work in disability services.

Enabling and protective legislation Given that governments are crucial in the development of a legal and policy framework for people with a disability, political representation is essential in ensuring that this framework develops appropriately. Sawyer and Zappala (2001) observe that for most groups in

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our society (including disadvantaged groups), the process of political representation starts at the ballot box. In Australia, voting in government elections is compulsory, reflecting the principle that everyone should have access to the selection of political representatives. How this plays out for some sections of our community isn’t clear. Many articulate and politically aware people with a disability are registered to vote. However, many others (including many people with an intellectual disability) are not. So how may such people be represented? To address this issue, a wide range of disability organisations and advocacy groups have developed in recent decades. One of the aims of these organisations is to speak on behalf of their members, who on their own may not be able to effectively lobby decision-makers. Examples of such organisations at both the international and the national level include Disabled Persons International (DPI) (2004), the National Council on Intellectual Disability (2004) and the Australian Council for the Rehabilitation of the Disabled (ACROD) (2004). The extent to which organisations such as these may be said to ‘speak’ for all people with a disability is open to debate (Newell & Wilkinson, 2004). However, the complexity of modern government has made it essential for people with a disability to pool their resources to get their views heard. Perhaps it is a measure of the success of their representations that it is not uncommon for Australian state and territory governments to have departments that specifically acknowledge disability in their names. Examples at the time of writing are the Western Australia Department of Disability Services, and the NSW Department of Ageing, Disability and Home Care. There is no truly international legislation to protect the interests of people with a disability. However, the UN has shown considerable leadership in developing a variety of initiatives to encourage its member countries to create supportive legislative and policy frameworks (Hurst, 2004). Examples of these initiatives were discussed on pages 53–56 in chapter 3, dealing with human rights and social justice. Taken together, these declarations and programs send a clear message about the place of people with a disability in the global community. This message is expressed in work on the International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities, which reiterates the rights of this population and highlights the barriers to their implementation (Byrnes, 2004).

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As the title of this section suggests, the result of legislation specific to people with a disability is both to enable – to make possible – and to protect. This means that laws may involve much more than just the prevention of injustice and discrimination. They may also provide mechanisms by which people with a disability can achieve outcomes comparable to the rest of the community (Meekosha, 2001). The 1990s was a significant period for people with a disability in many countries. Throughout this decade, a number of countries enacted specific disability discrimination legislation that built on existing anti-discrimination laws, and also enacted legislation designed to change the way in which people with a disability are supported in the community. International legislative frameworks The United States

The Americans with Disabilities Act was passed in 1990 (US Department of Justice, 2004). This law defines disability broadly as a physical or mental impairment that significantly limits one or more of the major life activities of an individual. The areas covered by the Act are employment, transportation, public accommodations, public services and telecommunications. It is supplemented in the area of education by the Individuals with Disabilities Education Act 1997 (US Department of Education, 2004). A decade after the Americans with Disabilities Act was passed, the Society for Human Resource Management (2000) noted that most of the employers surveyed about the impact of the Act on their businesses said that making accommodations (that is, providing additional supports) was relatively straightforward, but that changing the attitudes of co-workers and supervisors had been difficult. A number of limitations of the Act have been identified. These include some US courts interpreting disability in a way that excludes many serious disorders, and the very low percentage of discrimination charges – 17 per cent – that result in a favourable outcome for the person with a disability (Lee, 2003). Hinton (2003) surveyed people with a disability about their perceptions of the Act. She reported that although accessibility for people with disabilities in the public sector was rated as higher than in the private sector, only one area (telecommunications) was rated as having improved significantly since 1990.

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The United Kingdom

The UK Disability Discrimination Act was passed in 1995. The original legislation covered only employment, the provision of goods and services, and buying and renting land and property. The legislation was subject to criticism because: • it did not fully address some important areas of community participation (such as education and transport) • the wording of the law meant that it did not apply to all people with a disability, and • there were significant loopholes in the legislation (Swain, French & Cameron 2003, p. 158). Nevertheless, the Act does allow a Disability Rights Commission to deal with complaints of discrimination against people and organisations. Since its introduction, there have been a number of amendments to the legislation to extend it to a wider range of areas including school and higher education (Hurst, 2004), and to clarify its intent. Canada

The Canadian Human Rights Act 1985 was designed to protect all people, including people with a disability, from discrimination. Disability under the Act may be mental or physical, and it includes disfigurement, either past or present, and alcohol or drug dependence. The legislation states that all Canadians have the right to equality, equal opportunity, fair treatment and an environment free of discrimination. Discriminatory practices cover the provision of goods and services, employment and wages, accommodation and involvement in community organisations. The Canadian Human Rights Tribunal applies the principles of the Act to cases referred to it by the Canadian Human Rights Commission (2004). The tribunal functions like a court of law, but it is less formal and only hears cases relating to discrimination.

Australian disability legislation As we have said, disability legislation may both enable and protect. Both these aspects of Australian law, as they relate to people with a disability, are discussed below.

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Enabling legislation in Australia Following an extensive review of services to people with a disability in the mid 1980s (Handicapped Programs Review, 1985), the Commonwealth Disability Services Act 1986 was passed. One of the principal features of this legislation was its goal of enhancing the inclusion of people with a disability across all sectors of the community. Up until that time, disability services in this country were characterised by segregation and by a lack of preparedness to extend to people with a disability rights regarded as standard by the community at large. An example of this related to sheltered workshops, with the payment of non-award wages and the absence of benefits such as sick leave. In 1991 the Commonwealth, state and territory governments agreed to some changes in the administration of disability services. The Commonwealth State/Territory Disability Agreement (FACS, 2002) sets out the specific responsibilities that the Commonwealth, states and territories have in administering disability support services. The agreement was progressively implemented across all states and territories by 1993. It has been renewed several times. It provides for the Commonwealth to administer funding for employment services, and for the states and territories to administer funding for accommodation and other support services. Responsibility for the administration of advocacy and research activities is shared. Before the implementation of the agreement, the Commonwealth provided direct funding to a wider range of services. This transfer of responsibility of some disability services required the states to enact their own legislation to complement the Disability Services Act. As a consequence, all states and territories in Australia now have their own legislation relating to the provision of disability services. One example of this legislation is the Queensland Disability Services Act 1992. Box 9.1 contains an extract from the Queensland legislation that relates to human rights. A further requirement of the Commonwealth State/Territory Disability Agreement was that all services should demonstrate that they met minimum standards reflecting the objectives of the Disability Services Act. These disability services standards set the minimum and enhanced operating requirements for government and funded non-government disability service providers. The standards,

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in conjunction with a variety of monitoring mechanisms, are intended to assure the user of a service that a minimum level of service quality is being provided.

BOX 9.1 • EXTRACT FROM QUEENSLAND DISABILITY SERVICES ACT PRINCIPLE THAT PEOPLE WITH DISABILITIES HAVE THE SAME HUMAN RIGHTS AS OTHERS.

People with disabilities have the same basic human rights as other members of society and should be empowered to protect their rights. People with disabilities have the right to: •

respect for their human worth and dignity as individuals; and

•

realise their individual capacities for physical, social, emotional and intellectual development; and

•

services that support their attaining a reasonable quality of life in a way that supports their family unit and their full participation in society; and

•

participate actively in the decisions that affect their lives, including the development of disability policies, programs and services; and

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any necessary support, and access to information, to enable them to participate in decisions that affect their lives; and

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receive services in a way that results in the minimum restriction on their rights and opportunities; and

•

pursue any grievance in relation to services without fear of the services being discontinued or recrimination from service providers; and

•

adequate support to enable pursuit of grievances in relation to services.

(State of Queensland, 2002, p. 9)

All service providers must demonstrate full compliance with the standards. Failure to do so may result in sanctions for the service, and a requirement to improve within an agreed timeframe (see Department of Family and Community Services, 2004a, for an example of the quality assurance process for disability employment services). There are nine disability services standards for state and territoryfunded services. A brief description of these nine standards, as shown on the Victorian Department of Human Services web-site, appears in box 9.2.

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Commonwealth-funded disability employment services are required to meet three additional standards (FACS, 2004b). These extra standards cover: • employment conditions – each person with a disability should have working conditions comparable to those of the general workforce

BOX 9.2 • VICTORIAN DISABILITY SERVICES STANDARDS 1 Service access Each client seeking a service has access to a service on the basis of relative need and available resources. 2 Individual needs Each client receives a service that is designed to meet, in the least restrictive way, his or her individual needs and personal goals. 3 Decision-making and choice Each client has the opportunity to participate as fully as possible in making decisions about the events and activities of his or her daily life in relation to the services he or she receives. 4 Privacy, dignity and confidentiality Each client’s right to privacy, dignity and confidentiality in all aspects of his or her life is recognised and respected. 5 Participation and integration Each client is supported and encouraged to participate and be involved in the life of the community. 6 Valued status Each client has the opportunity to develop and maintain skills and to participate in activities that enable him or her to achieve valued roles in the community. 7 Complaints and disputes Each client is free to raise and have resolved, any complaints or disputes he or she may have regarding the service provider or the service. 8 Service management Each service provider adopts sound management practice which maximises outcomes for clients. 9 Freedom from abuse and neglect Each client has the right to be free from physical, sexual, verbal and emotional abuse and neglect.

(Department of Human Services, 2004)

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• service-recipient training and support – the employment opportunities of each person with a disability are to be optimised by effective and relevant training and support • staff recruitment, employment and training – each person employed to deliver services to a person with a disability should have relevant skills and competencies. The disability services standards also include guidance to services about how they may meet these standards. For example, the Victorian disability service standard for decision-making and choice requires that ‘the service provider does not implement major changes affecting clients without consultation with them’ (Department of Human Services, 2004). Protective legislation in Australia Another major legal strategy has been the introduction of antidiscrimination legislation, along the lines of legislation to prohibit sex and race discrimination, at both the Commonwealth and state levels. Examples of such legislation are the NSW Anti-Discrimination Act 1982 and the Queensland Anti-Discrimination Act 1991. Drawbacks of this legislation are that it is generic in nature and does not address disability in detail, and that it does not address cross-border issues and Commonwealth government agencies. In 1992 an overriding piece of Commonwealth legislation, the Disability Discrimination Act, was passed. For the first time in Australia, this Act specifically addressed discrimination against people with a disability across all aspects of life (for example employment, education, transport and community services). One aspect of the Disability Discrimination Act that has been widely praised is the way it defines disability to include both a range of traditionally acknowledged impairments (physical, intellectual, psychiatric and sensory) and some impairments that are not recognised as disabilities in some settings in Australia (such as learning disabilities and physical disfigurement). The Act also recognises disabilities that people are presently experiencing, have had in the past, or may have in the future. Although the definition of disability in the Act has been strongly influenced by the medical model, it defines disability in such broad terms that it also captures much of the essence of the social construction of disability.

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Compliance with the Disability Discrimination Act may be achieved through complaints (or sometimes just the threat of a complaint) to the Human Rights and Equal Opportunity Commission (HREOC) (2004a). Conciliation is encouraged as a first step between the person with a disability or their advocate and the person or organisation complained about. Although the Disability Discrimination Commissioner’s recommendations following conciliation are not legally binding, there is an option to take the complaint to the Federal Court if conciliation fails. The Disability Discrimination Act allows for the development of two additional measures, standards and action plans, to supplement the Act. Standards

Standards clarify what services and organisations may be required to provide people with a disability, and what measures they should implement to prevent discrimination. In mid-2005, transport and education standards had been ratified. However, there had been little progress in the development of standards for employment and for other areas (see Human Rights and Equal Opportunity Commission 2004b). Box 9.3 gives an example of transport standards that relate to the use of restraints in buses and other vehicles. The standards we are discussing now should not be confused with the Australian disability services standards discussed on pages 222–225. While one outcome from the implementation of the Disability Discrimination Act standards may be improved community services, these standards are primarily designed to assist service providers to meet their responsibilities under the Act. Action plans

Action plans, another measure provided by the Disability Discrimination Act, may be developed by an organisation to eliminate, as far as possible, disability discrimination in that organisation. Typically, such plans include statements about the way in which the organisation operates, including action designed to eliminate discrimination in employment practices and the way in which it provides services to others. In July 2004 over 270 action plans had been lodged with the Human Rights and Equal Opportunity Commission (2004c). The success of an action plan, in terms of eliminating disability discrimination and providing a defence against complaints of discrimination, largely depends on the effectiveness of the actions taken as part of the plan.

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BOX 9.3 • EXTRACT FROM DISABILITY STANDARDS FOR ACCESSIBLE PUBLIC TRANSPORT GUIDELINES 2004 DIVISION 9.2: RESTRAINTS

9.5 Active and passive restraining systems The Disability Standards recognise the use of both active and passive restraining systems. 9.6 Active restraining systems (1) An active restraint anchors a wheelchair or similar mobility aid into an allocated space. Anchorage belts are an example of active restraints. (2) Regulations that normally require passengers to wear safety belts apply equally to all passengers. This means that operators of services on which safety belts are mandatory must provide restraints for use by people with disabilities. Similarly, passengers need to use safety belts if they are compulsory, unless the passengers have a dispensation through normal channels. 9.7 Passive restraining systems (1) A passive restraining system contains movement of a wheelchair to within an allocated space. A vertical surface that restricts the movement of a wheelchair is an example of a passive restraint. (2) An operator may rely on the sides of a conveyance, or a padded rail, to act as passive restraints against excessive sideways movement of a mobility aid. The allocated space could be located behind a bulkhead to prevent forward movement. The passive restraints bounding an area of this kind would then prevent a wheelchair from rolling or tipping.

(Attorney-General’s Department, 2004)

Criticisms of the Act

Despite its potential for achieving change, the Disability Discrimination Act has come under some criticism (see Jones & Marks, 1999; Odowski, 2002); for example, criticism of lengthy delays in conciliated cases heard by the Disability Discrimination Commissioner, and the lack of specificity in the original legislation about minimum standards of community services. In reviewing the Act, the Productivity Commission (2004, p. xlvii) noted that the [Disability Discrimination Act] has been reasonably effective in addressing disability discrimination. But its effectiveness has been patchy and there is still a long way to go.

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In particular, the commission remarked that access to public transport and education had improved more than access to employment, and that people with physical disabilities had been helped more than those with intellectual disability and mental illness. It would be naive to think that the Disability Discrimination Act has eradicated much of the discrimination that people with a disability experience. As with all legislation, the Act is fairly open in texture and consequently open to interpretation. As with all legislation, the spirit of the Act continues to be resisted at a number of levels. And as with all legislation, anyone who seeks to use it to protect their interests needs substantial emotional and financial resources, and the assistance of a lawyer or advocate (Jones & Marks, 1999). Although there was criticism about a perceived inadequate education campaign for the Disability Discrimination Act in the early years of its implementation, the legislation has had a significant impact in the level of awareness about disability in the community. Evidence for this can be found in: • some high profile court cases involving the Act • the widespread use of action plans • the development of some excellent professional development resources (Department of Education, Training and Employment, 2000; Universities Disabilities Co-operative Project, 1999). Limitations of legislative protection One obvious reason for the relevance of the law to disability is that it can offer some protection to a group of people in our community who may experience discrimination. The Australian and international examples of protective legislation discussed earlier are examples of this. However, there is another important way in which the law is relevant to disability – laws, and their interpretation, have the potential to disadvantage the very people they are designed to protect. A good example of this danger is the association between people with an intellectual disability and crime. In responding to the question, ‘Is IQ related to criminality?’ Kane (2003) concludes that

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the answer is yes. Although the correlational nature of findings precludes any definitive statement about the causality of crime, the preponderance of empirical evidence implicates IQ as one of the most important variables related to criminality. (p. 28)

In other words, while it is incorrect to say that low intelligence causes crime, it is true that there are many more people with an intellectual disability charged with crime than one might expect in comparison to the rest of the population. Kane estimated that people with low IQ in the US are seven times more likely to be imprisoned than those with above average IQ. In the US, this relationship between intellectual disability and crime has been subject to much recent debate because a number of US states continue to execute people with an intellectual disability who are found guilty of very serious crimes. This debate has addressed issues such as whether people with an intellectual disability are less responsible than others, and the problems inherent in basing decisions about execution on sometimes unreliable IQ test results (Greenspan & Switzky, 2003; Watt & MacLean, 2003). Although execution was abolished in Australia in the 1960s, there is much concern in this country about the disproportionate number of people with an intellectual disability who are charged with crimes and who are sentenced to imprisonment (Davis, 2000). Cockram and Underwood (2000) documented this disproportion in tracking adults with an intellectual disability through the criminal justice system over a ten-year period in Western Australia. Hayes (2000) found that the prevalence of intellectual disability in NSW jails had risen from 12 per cent to 20 per cent from the late 1980s to the mid-1990s. The Australian Institute of Health and Welfare (2003) estimates that the prevalence of intellectual disability in the community is less than three per cent. While the rate of incarceration for people with a disability is much higher than that for the rest of the community, there are also concerns that people with a disability may be abused and taken advantage of because they are not aware of their rights. In some states and territories, specific advocacy services operate that address this problem. Box 9.4 gives an example of how one such service, the Intellectual Disability Rights Service (Sydney), can help people with an intellectual disability. There are also useful professional resources in this area (Simpson & Rogers, 2002).

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BOX 9.4 • JUDY’S STORY Judy lives in a group home with Anna, David and Miguel. Support workers come in for five hours a day to help each person with day-today requirements. One of the support workers, Monique, is Judy’s cousin. Judy and Miguel have started a relationship over the past few months, and they have recently talked about getting married. Judy told her family about her relationship with Miguel when things started getting serious. Her father was strongly opposed to her having a relationship with any man, but particularly with Miguel because he is Spanish. He told her that if she didn’t break off the relationship, he would make sure it was broken off for her. Judy continued to see Miguel, and her father began coming around to the house at times he suspected they would both be there. He would burst into the house, shouting and threatening to throw Miguel off the balcony if he caught him near Judy. One day, he saw Miguel disappearing out the back door as he came through the front door. He screamed at Judy, and hit her across the face and head. It was not the first time he had done this. Judy’s housemate, Anna, had heard the local coordinator talking at a support group meeting for women with disabilities. She told Judy about the legal protection scheme and, together, they went to see the coordinator, Wendy. Wendy assured Judy that she was doing the right thing in taking action to stop her father hurting and frightening her. She explained all the options to Judy and went over them a few times so that Judy really understood. Judy decided to apply for an apprehended violence order (AVO) against her father. She thought the hardest thing was going to be seeing her father in court. She was scared about that. Wendy explained that, although she wasn’t able to stand in the witness box with Judy, she would stand in a place where Judy could look at her, rather than at her father. She also told Judy that her father couldn’t touch or talk to her in court, which made her feel a bit better. On the day Judy was to go to court, her cousin Monique was rostered on. Monique offered to drive her to court and help her find where she needed to go. On the way, Monique started to tell Judy about how upset her mother was, and that taking out an AVO against her father would kill her mother. Judy started to feel very afraid. She wanted her father to stop hurting her, but what if her mother was also hurt? That would be terrible! At the court, Wendy noticed that Judy was extremely nervous, shaking and distressed. They went together to a quiet room and spent some time going over the things they had talked about. Then Wendy asked Monique to wait outside. After some gentle coaxing, Judy told Wendy of her fears. Wendy was able to explain things more clearly to Judy, and help her realise that Monique didn’t mean that Judy would

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kill her mother – and that Monique might not have Judy’s best interests at heart anyway! Wendy asked Judy if she could tell her solicitor that Judy had a disability, and also that members of her family had been trying to convince her not to take action against her father. Judy agreed to go ahead with the AVO, and to let her solicitor tell the magistrate about her disability. She was still very nervous though. In court, Judy found the magistrate hard to understand. He used a lot of complicated words and talked fast. When he was told that Judy had trouble understanding, he talked more slowly and it was a bit easier. He asked her to tell him what had happened, and he listened to everything she said. The magistrate granted the order, and Judy thought that going to court had been worthwhile. After the court session was finished, she and Wendy talked about other things she could do to deal with her father. Wendy gave her some phone numbers of places where she could get help, and helped her ring them up. Judy joined a support group for women who are victims of violence, and an assertiveness class.

(from Intellectual Disability Rights Service, Sydney, www.idrs.org.au)

Dworkin (1998) argues that the law’s attitude is constructive: it aims in the interpretive spirit, to lay principle over practice to show the best route to a better future, keeping the right faith with the past. (p. 413)

No doubt this is a noble intention. However, as we have seen, legislation to protect the interests of people with a disability is far from perfect, and on its own it is insufficient to achieve its intention. Laws can certainly check some serious excesses of behaviour, but not all. In many ways, the law is like a safety net designed to prevent people from falling and injuring themselves (in this context, preventing people with a disability from experiencing discrimination and abuse). The need to reach agreement on an acceptable law often means that the law (and the net) is fairly open in structure. That is, there is still a chance that some may fall through the net. On the other hand, in many ways making the law (and the net) tighter is undesirable. To do so would require a much more extensive range of laws, much more time would be needed to reach agreement about these laws, and it would also mean that decision-making about supporting people with a disability could be transferred from appropriate professionals to lawyers.

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So laws to protect the interests of people with a disability are just part of the equation. Instruction and advice about how to act in providing support across a wide variety of daily activities must come from another source. It is here that policies can make an important contribution.

Organisational policy Research both shapes and is shaped by public policy. Empirical findings inform policymakers, and knowledge disseminated through educational programs ultimately influences service delivery. (Kewman, 2001, p. 116)

This quote illustrates the way in which policy develops and, in turn, how policy may influence what we do in the workplace. At its best, policy reflects and reinforces evidence-based practice. For example, a policy that the disability service will review all person-centred plans every 12 months, and that this review will include the person with a disability and/or their advocate, reflects both our beliefs about best practice, and what the research literature tells us about the effective monitoring of support plans. Since both Commonwealth and state governments provide significant funding for disability services, both levels of government are involved in developing their own disability policies. In addition to policy at the government level, all disability services develop their own policy statements that should be consistent with government policy. Generally, the policies developed by a particular disability service will be more specific about guiding the behaviour of its employees than the policy statements of governments. Writing about specific disability policy is difficult in the context of this book, because by the time the book is published it is likely that many specific policies will have changed to reflect more recent research and social trends. What follows, therefore, discusses broad trends in disability policy that have developed in the past decade, and that are expected to continue to have an impact on disability services into the near future (see Bigby & Ozanne, 2001, for a fuller discussion of some of these trends). Not surprisingly, you will find a close relationship between these broad policy trends and the principles of service provision discussed in chapter 3.

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Flexibility of services The ability of services to be flexible in how they operate extends to several areas. First, many disability services no longer receive their funding from government in a single block; instead, an increasing number are funded on the basis of the needs of the people who access the service. For example, the Commonwealth department responsible for funding employment services for people with a disability uses this system to provide more money for people with high support needs, and less for people with lower support needs (FACS, 2004c). It is argued that this approach is fairer than the block funding provided in the past because the limited funds available to disability services are more equally shared across services on the basis of the needs of the people who use them. A second aspect of flexibility is that services are expected to tailor the support they provide to service users. That is, they are expected to demonstrate that they are providing services that are meeting people’s needs. This may sound very reasonable; however, it is a different approach from that taken in the past. Until fairly recently, many disability services took the approach that the service they currently offered was the only service to be made available to users. Under this approach, large group activities (which may not have suited all the members of the group), limited or no choice of activities, and a lack of consultation with the people supported by the service were common. In contrast, services are now expected to meet a range of standards (covered in the legislation section on pages 222–225) designed to ensure that the service provided is closely related to the identified needs and desires of supported people. Individualised and person-centered planning, which are discussed widely in this book, are examples of ways in which disability services may follow this policy. A final aspect of flexibility is the expectation that modern disability services should support people with a wide range of personal and cultural characteristics. Two instances of this relate to the increasing number of older people with a disability in the community accessing disability services (Bigby, 2002), and the development of disability services designed to meet the needs of specific groups in the community (for examples see Institute for Family Advocacy and Leadership Development, 2004; Multicultural Disability Advocacy Association of NSW, 2004).

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Orientation to support needs This characteristic of disability policy is closely related to service flexibility. However, it extends the notion by encouraging us to move away from a deficit-based understanding of disability to an understanding based on what supports a person may require to more fully participate in society. There are two ways in which we can consider supports. One approach is to note that there is a range of ‘formal supports’ that have traditionally been used by people with a disability. Examples of these formal supports are recreation and sporting services such as Special Olympics, accommodation services such as group homes, and the health services that all members of the community may access. Although these formal services will continue to play a major role in supporting people with a disability, they have their limitations. The most significant is that many of the community’s needs are not met by formal supports. Rather, there is a wide range of ‘informal supports’ that are crucial to enhancing our quality of life. Examples are our families and friends, and members of social or church groups. Ignoring informal supports in the planning of disability services means that we may not be making the best use of available resources. In other words, it is just as important to meet someone’s needs for companionship by encouraging their interaction with family and friends (informal support) as to meet their needs for shelter through access to accommodation (formal support). The familycentered approach, which developed first in services for young people with a disability, is having an increasing impact on all services for people with a disability (see Dunst, 2002, and Keen & Knox, 2004, for discussions of this approach). Accountability Several aspects of accountability are evident in modern disability policy. At one level, accountability is to the people who access disability services. Several of the disability service standards shown in box 9.2 address this type of accountability, with standard 3 (about decision-making and choice) addressing it most directly. Commonwealth policy, and guidelines for following policy, also deal with accountability through encouraging services and the community to consult people with a disability when making decisions that affect their interests (FACS, 1999).

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Another aspect of accountability that has increasingly influenced disability policy and service in recent years is designed to ensure that disability services function in an efficient and cost-effective manner. The monitoring of service outcomes and the consultancy support provided to disability employment services associated with these services’ regular quality assurance reviews is an example of this approach (FACS, 2004a). Another feature of this aspect of accountability is the increase in the amount of data collection on disability services, intended to better inform policy decisions in the future (AIHW, 2000). As chapter 3 explained, this aspect of accountability has been controversial because some disability services have seen themselves as being unfairly squeezed in their budgets and operation. Cost-limited resourcing Along with health and education, welfare is one of the big-ticket items of both state and Commonwealth government budgets. As noted in chapter 3, our demand for more and better community services is insatiable. The challenge for our politicians and policy makers is to make the most effective use possible of the limited resources available to us. Past experience tells us that it will never be possible to fully meet all the needs of people with a disability. The best we can do is to prioritise those needs and to address as many of the most pressing needs as we can. Case-based funding is an example of a policy that tries to equitably share limited resources among people with a disability (FACS, 2004c).

Transferring legislation and policy into practice Having a clear idea about how we should provide support to people with a disability is just one (very important) step in achieving improved outcomes for these people. Good intentions, on their own, will not guarantee these improved outcomes. Bigby and Ozanne (2001) note that while intellectual disability policy is particularly strong on the articulation of values and principles, across Australia and other Western countries, a major weakness lies in policy implementation. (p. 179)

Put simply, without the will, the resources, and the training, the beneficial effects of legislation and policy will be diminished.

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The gap between best practice and reality can be illustrated by two examples. First, there are many indicators of considerable unmet need in the community for disability services (AIHW, 2002). These indicators show that the growth in the demand for support has not been fully matched with new resources. It is not uncommon to hear of families ‘driven to desperation’ because they cannot access services such as respite care or other accommodation options (Mirfin-Veitch, Bray & Ross, 2003). A second example of the gap between best practice and reality is the outcomes associated with the movement of people from large residential institutions to accommodation in the community. While this process of deinstitutionalisation was praised throughout the 1970s and 1980s as likely to achieve improved quality of life for people with a disability and their families, we now understand that the process has not always been as successful as expected (see Stancliffe, 2002, Tabatabainia, 2003, and Taylor, 2001, for discussion of this issue). The following issues are crucial to the effective implementation of disability legislation and disability policy: • adequate resourcing of disability services • improvements in the initial training of support staff • opportunities for ongoing professional development of support staff • management practices that encourage the uptake of evidencebased practice into disability services. Several of these issues are addressed in later chapters. For example, you’ll find staff learning and development discussed in some detail in chapter 13, and chapter 12 covers the effective management of disability services.

Conclusion Law to specifically address discrimination against people with a disability has developed in many western countries in the past two decades. The key features of the Australian version of this legislation, the Disability Discrimination Act, were reviewed in this chapter. In addition to this protective legislation, Australia has developed

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legislation at both the state and Commonwealth levels designed to enable people with a disability. One outcome of this legislation is the development of standards to guide the way in which disability services are provided. Protective and enabling legislation is supplemented by organisational policy designed to reinforce relevant law, and to provide more specific guidelines to the employees of disability services. While law and policy are important means of regulating what we do in supporting people with a disability, they have their limitations. Laws and policy cannot cover every aspect of the work and community environments. Staff who work with people with a disability must be aware of the principles that guide what we do in the workplace as well as an awareness of professional ethics.

Learning activities 1

Identify the key features of the Australian Disability Discrimination Act and the ways these features impact on disability services and the wider community.

2

Analyse an example of a disability action plan from a local organisation.

3

Develop a cross-referencing chart of the Australian disability services standards that appear in box 9.2 and the principles addressed in chapter 3. For example, you may find overlap between the principle of person-centred approaches and the standard on meeting personal needs.

4

Collect examples of disability policy from relevant government departments and private industry in your local area.

5

Research and discuss complaint decisions from the Australian Disability Discrimination Act. These decisions may have been conciliated (that is, agreement was reached between the parties with the assistance of the Disability Discrimination Commissioner), or they may have been taken to the Federal Court. You’ll find the website of the Human Rights and Equal Opportunity Commission useful in doing your research (www.hreoc.gov.au).

6

For box 9.2, provide an example of staff behaviour in a disability service that would indicate that each of these disability standards was being met.

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References AIHW see Australian Institute of Health and Welfare Attorney-General’s Department (2004). Disability standards for accessible public transport guidelines 2004. Retrieved July 20, 2004 from . Australian Council for the Rehabilitation of the Disabled (2004). Retrieved July 12, 2004 from . Australian Institute of Health and Welfare (2000). Integrating indicators: Theory and practice in the disability services field. Canberra: AIHW. Australian Institute of Health and Welfare (2002). Unmet need for disability services: Effectiveness of funding and remaining shortfalls. Canberra: AIHW. Australian Institute of Health and Welfare (2003). People with an intellectual or early onset disability in Australia. Journal of Intellectual & Developmental Disability, 28, 1, 79–83. Bigby, C. (2002). Ageing people with a lifelong disability: Challenges for the aged care and disability sectors. Journal of Intellectual & Developmental Disability, 27, 4, 231–41. Bigby, C. & Ozanne, E. (2001). Shifts in the model of service delivery in intellectual disability in Victoria. Journal of Intellectual & Developmental Disability, 26, 2, 177–90. Byrnes, A. (2004). The proposed UN draft convention on the human rights of persons with disabilities: What’s in it, and what isn’t? Paper presented at a Human Rights and Equal Opportunity Workshop on the UN Draft Convention, March 2004. Retrieved November 29, 2004 from . Canadian Human Rights Act. Retrieved July 20, 2004 from Canadian Human Rights Commission (2004). Message from the Chief Commissioner. Retrieved July 20, 2004 from . Cockram, J. & Underwood, R. (2000). Offenders with an intellectual disability and the arrest process. In M. Jones & L. A. Basser-Marks (Eds), Explorations on law and disability in Australia (pp. 101–19). Sydney: Federation Press. Davis, C. (2000). Systemic abuse: Intellectual disability and the criminal justice system. In A. Shaddock, M. Bond, I. Bowen & K. Hales (Eds), Intellectual disability and the law: Contemporary Australian issues (pp. 73–6). Callaghan, NSW: Australian Society for the Study of Intellectual Disability. Department of Education, Training and Employment (2000). Fair and reasonable: Disability Discrimination Act implementation kit. Professional development resource. Adelaide: DETE, South Australia. Department of Family and Community Services (1999). Inclusive consultation: a practical guide to involving people with disabilities. Canberra: FACS. Department of Family and Community Services (2002). Commonwealth/State Disability Agreement. Retrieved July 21, 2004 from . Department of Family and Community Services (2004a). Quality assurance for disability employment services. Retrieved July 21, 2004 from . Department of Family and Community Services (2004b). Disability Services (Disability Employment and Rehabilitation Program) Standards 2002. Retrieved July 21, 2004 from . Department of Family and Community Services (2004c). Case based funding. Retrieved July 1, 2004 from . Department of Human Services, Victoria (2004). Victorian Disability Services Standards. Retrieved July 21, 2004 from
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pages/prov_quality_standards?Open>. Disability Discrimination Act 1992. Retrieved July 12, 2004 from . Disability Discrimination Act (Amendment) Regulations 2003. Retrieved July 15, 2004 from . Disability Services Act 1986. Retrieved July 12, 2004 from . Disabled Persons International (2004). Retrieved July 12, 2004 from . Dunst, C. J. (2002). Family-centered practices: Birth through to high school. Journal of Special Education, 36, 3, 139–47. Dworkin, R. (1998). Law’s empire. Oxford: Hart. FACS see Department of Family and Community Services Greenspan, S. & Switzky, H. N. (2003). Execution exemption should be based on actual vulnerability, not disability label. Ethics & Behaviour, 13, 1, 19–26. Handicapped Programs Review (1985). New directions: Report of the Handicapped Programs Review. Canberra: AGPS. Hayes, S. (2000). Needle in the haystack: Identifying the offender with intellectual disability. In A. Shaddock, M. Bond, I. Bowen & K. Hales (Eds), Intellectual disability and the law: Contemporary Australian issues (pp. 63–71). Callaghan, NSW: Australian Society for the Study of Intellectual Disability. Hinton, C. A. (2003). The perceptions of people with disabilities as to the effectiveness of the Americans with Disabilities Act. Journal of Disability Policy Studies, 13, 4, 210–20. HREOC see Human Rights and Equal Opportunity Commission Human Rights and Equal Opportunity Commission (2004a). Retrieved July 20, 2004 from . Human Rights and Equal Opportunity Commission (2004b). Disability standards and guidelines. Retrieved July 12, 2004 from . Human Rights and Equal Opportunity Commission (2004c). Action plans and action plan guides. Retrieved July 20, 2004 from . Hurst, R. (2004). Legislation and human rights. In J. Swain, S. French, C. Barnes & C. Thomas (Eds), Disabling barriers: Enabling environments (pp. 297–302). London: Sage. Institute for Family Advocacy and Leadership Development (2004). Retrieved July 22, 2004 from . Jones, M. & Marks, L. A. B. (1999). Disability rights and law in Australia. In M. Jones & L. A. B. Marks (Eds), Disability, divers-ability and legal change (pp. 189–208). Boston: Nijhoff. Kane, H. (2003). Straight talk about IQ and the death penalty. Ethics & Behaviour, 13, 1, 27–33. Keen, D. & Knox, M. (2004). Approach to challenging behaviour: A family affair. Journal of Intellectual & Developmental Disability, 29, 1, 52–64. Kewman, D. G. (2001). Advancing disability policy: Opportunities and obstacles. Rehabilitation psychology, 46, 2, 115–24. Lee, B. E. (2003). A decade of the Americans with Disabilities Act: Judicial outcomes and unresolved problems. Industrial Relations, 42, 1, 11–30. Meekosha, H. (2001). The politics of recognition or the politics of presence: The challenge of disability. In M. Sawyer & G. Zappala (Eds), Speaking for the people: Representation in Australian politics (pp. 225–45). Melbourne: Melbourne University Press. Mirfin-Veitch, B., Bray, A. & Ross, N. (2003). ‘It was the hardest and most painful decision of my life’: Seeking permanent out-of-home placement for sons and daughters with disabilities. Journal of Intellectual & Developmental Disability, 28, 2, 99–111.

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Multicultural Disability Advocacy Association of NSW (2004). Retrieved July 22, 2004 from . National Council on Intellectual Disability (2004). Disability information and communication exchange. Retrieved July 12, 2004 from . Newell, C. & Wilkinson, R. (2004). Tasmania together? A disability critique of a social plan. Disability & Society, 18, 4, 457–70. Ozdowski, S. (2002). Disability discrimination legislation in Australia from an international human rights perspective: History, achievement and prospects. Retrieved July 12, 2004 from . Productivity Commission (2004). Review of the Disability Discrimination Act 1992: Inquiry report. Retrieved July 20, 2004 from . Sawyer, M. & Zappala, G. (2001). Introduction: Representation in Australian politics. In M. Sawyer & G. Zappala (Eds), Speaking for the people: Representation in Australian politics (pp. 1–18). Melbourne: Melbourne University Press. Simpson, J. & Rogers, L. (2002). Intellectual disability and criminal law. Sydney: LIAC. Society for Human Resource Management (2000). The ADA at work: Implementation of the employment provisions of the Americans with Disability Act. Washington, DC: Society for Human Resource Management. Stancliffe, R. (2002). Provision of residential services for people with intellectual disability in Australia: An international comparison. Journal of Intellectual & Developmental Disability, 27, 2, 117-124. State of Queensland (2002) Disability Services Act 1992. Retrieved July 21, 2004 from . Swain, J., French, S. & Cameron, C. (2003). Controversial issues in a disabling society. Buckingham: Open University Press. Tabatabainia, M. M. (2003). Listening to families’ views regarding institutionalization and deinstitutionalization. Journal of Intellectual & Developmental Disability, 28, 3, 241–59. Taylor, S. J. (2001). The continuum and current controversies in the USA. Journal of Intellectual & Developmental Disability, 26, 1, 15–33. US Department of Education (2004). Individuals with Disabilities Education Act 1997. Retrieved July 21, 2004 from . US Department of Justice (2004). Americans with disabilities Act Home Page. Retrieved July 12, 2004 from . Universities Disabilities Co-operative Project (1999). Disability resource kit for academic staff. Sydney: Universities Disabilities Co-operative Project. Watt, M. J. & MacLean, W. E. (2003). Competency to be sentenced and executed. Ethics & Behaviour, 13, 1, 35–41.

10

Professional ethics and disability services Keith R McVilly and Trevor R Parmenter

Learning objectives After reading this chapter and completing the activities you should be able to: • understand what ethics are, and recognise how societal, organisational and individual values and beliefs shape services and consequently affect the quality of life experienced by people with a disability • discuss the contribution of ethics to the professionalisation of the disability work force, and the potential implications of this trend for disability professionals and their clients • explain the complexity of providing professional support to people with a disability, and work thorough various support-related dilemmas by applying basic ethical principles and reflective practice techniques to guide considerations and decisions.

Introduction This chapter asks you to think about and evaluate how direct support is provided to people with a disability on an everyday basis, and in particular what happens when there are important decisions to be made that affect people’s rights, dignity and quality of life. You are asked to consider how you make these decisions, and on what basis. The chapter challenges you to consider what it means to be a

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‘professional’, and how being professional in the provision of support can improve the quality of life of people with a disability. An important part of being professional in your work involves thinking and acting ethically – using moral principles, rules for right conduct or agreed standards of practice to guide what you do (see Corey, Corey & Callanan, 1998). This is particularly important where you are supporting people who look to you for guidance in decisionmaking, who depend on you to make decisions on their behalf, or who are vulnerable and at increased risk of exploitation or abuse (Conway, Bergin & Thornton, 1996; Lumley, Miltenberger, Long, Rapp & Roberts, 1998). This chapter therefore discusses what ethics are, and provides examples of different ethical principles that can guide direct support professionals in their everyday decision-making. Box 10.1 gives an example of a work situation that raises several ethical issues. What are these issues, and how might they be handled professionally?

BOX 10.1 • ANTHONY’S STORY Anthony is in his late 20s. He lives with three other men and works at a plant nursery five days a week. He has worked there since leaving school at 18. Every day he travels to and from work on the bus, accompanied by one of his housemates. Some weekends he goes to stay with his parents. He has been assessed as having a moderate intellectual disability and limited support needs. At his last medical review his doctor expressed concern that he was putting on weight (almost enough to be considered obese) and that his blood-sugar levels were very high. His father is known to be a diabetic. At home he has been very resistant to suggestions not to have desert of a night and to change his preferred food to a menu suggested by the dietician. Sometimes this has resulted in him throwing a plate of food at the table. You also discover that on the way home from work each day, he has been calling in at the corner shop and buying large quantities of sweets. His mother is worried, and tells you that you have ‘just got to stop him eating rubbish, or he will end up sick like his father’. At the next staff meeting it is proposed that everyone in the house model healthy eating for Anthony by adopting the dietician’s proposed diet. It has also been suggested that Anthony not be allowed to carry money, apart from his bus fare, and that the shopkeeper be ‘instructed’ not to sell food to him. To monitor the situation, a staff member from another house is to be asked to shadow Anthony for the first week and report on his activities.

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Being professional Supporting people with a disability can be a challenging, but rewarding, career. It is certainly by no means an easy career – in fact, it could be considered one of the more demanding in the field of human services. Many of those involved in this important work are called upon to make judgments and decisions, on a daily basis, that have the potential to affect the lives of their clients in a serious way (Iqbal, 2002; Jackson & Panyan, 2002; Parsons, 1996; Sigafoos, Arthur & O’Reilly, 2003). They need to be skilled and competent in a variety of practical tasks (McVilly, 1997; Test, Flowers, Hewitt & Solow, 2004). They must also be able to work with a range of values and beliefs, critically examine these and apply them to the complex work they perform, given that work in the community services industry reflects a complex interrelationship of duty of care, ethical behaviours, personal values, service delivery standards, and methodologies. (Community Service & Health Industry Training Council, 2003, p. 10)

Reflecting the complexity of the role of the direct support professional, a recent study of the disability workforce in the US identified over 155 different job titles or role descriptions applied to direct care staff (Test et al., 2003). And in a series of workshops conducted across Australia (McVilly, Martin-Nixon & Neville, 2003), the variety of tasks and expectations associated with direct support work were found to be many and varied. These tasks and expectations can be listed as: • personal carer • housekeeper • chef • gardener • chauffer • educator • financial planner • risk manager • administrator/bookkeeper

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• counsellor and life coach • mediator • crisis worker • interpreter • advocate • therapist • paramedic • companion (and friend?) In recognition of both the complexity and the importance of the role of providing support to people with a disability, there is a strong trend, internationally, towards the professionalisation of the disability support workforce. That is, there is an increase in the expectation that those providing support to people with a disability will be: • knowledgeable about what they do • competent in applying their knowledge in a practical way • committed to high standards of practice • prepared to reflect on and take responsibility for their actions and those of their colleagues (see AAMR, 2001; Thomas, 1994). A professional association, the National Alliance of Direct Support Professionals (2000) has been formed in the US. In the UK, the General Social Care Council (2002) has been established under legislation and given the task of accrediting and licensing social care workers (those who work with children, the aged and people with a disability). In Australia there have been professional associations such as the Social Trainers Association of Tasmania. Currently there is a Disability and Rehabilitation Professionals Association in South Australia (2004). Importantly, the Australian National Training Authority, responsible for the oversight of qualifications in the area of community services, has prescribed competencies specifically targeting ‘the improvement of professional practice’ in the disability support workforce (Community Service and Health Industry Training Council, 2003), with particular reference to: • client relationships

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• workplace behaviours • information collection, storage and dissemination • financial management • the operation (and management) of community organisations. These competencies define important workplace skills; but what does it really mean to be a professional? Bass et al. (1996) argue that professionals are people: • who provide a service to the community • whose service is based on knowledge and skills requiring specific training, extended practice and continuing education • who are accountable for their good conduct to both their peers and the community. The term ‘professional’ is often applied to people such as architects, dieticians, electricians, lawyers, medical practitioners, nurses, occupational therapists, physiotherapists, plumbers, psychologists, social workers, speech pathologists, and teachers. These are people who are recognised as having highly developed skills and expertise in particular areas, based on formal study and occupational experience. Their specialist training and experience generally leads to them being formally registered or licensed to do their job. Furthermore, professionals are considered to be people who have a vocation or a calling to a particular area of work and who are committed, long-term, to the practice of their work. They participate in ongoing education to improve their skills and to make sure they are up-to-date with the latest developments in their field. If they do not keep up-to-date with their skills, they can lose their registration or licence to practice. The work of a professional is subject to review and scrutiny, in the first instance self-scrutiny. A true professional constantly reflects on and questions what they do to see if it is consistent with accepted best practice. It is also subject to review by peers, usually through membership of a formal association. Such associations define the scope of the work that can be carried out by a member of their profession. This includes the things they should do, the things they should not do, and the things they should refer on to someone else to do. Professionals are also expected to follow codes of ethics, which describe the important values and beliefs held by the profession and

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how they should go about their business in a ‘professional’ way. The term ‘professional’ can also have negative connotations. It is sometimes applied to a person who is distant and unemotionally involved, or seemingly disconnected from the everyday life of those they work with. Some professionals are seen as knowledgeable but impractical, because they don’t appear to spend enough time with people to really understand what they need. Some are considered to be ‘only in it for the money’. However, these perceptions are generally based on the behaviours, practices and expressed opinions of some individuals – they are not typical of all professionals.

Being ethical in supporting people with a disability One of the characteristics of a professional is that their work is guided by an agreed code of ethics determined by their profession. In Australia, there is currently no nationally agreed code of ethics in the disability sector. However, in other areas of Australian human services there are nationally agreed codes. Examples are: • the Australian Association of Social Workers Code of Ethics, 2000 • the Australian Medical Association Code of Ethics, 1992 • the Australian Nursing Council Code of Professional Conduct, 1995 • the Australian Psychological Society Code of Ethics, 2003. An extract from the Australian Psychological Society Code of Ethics is given in box 10.2. Most codes of ethics, regardless of the profession concerned, have many values and assertions in common. For example, they usually specify that practitioners must only act in ways that will do no harm to people or that avoid the exploitation of those they serve. And they usually require practitioners to act only in ways that demonstrate: BOX 10.2 • EXTRACT FROM THE AUSTRALIAN PSYCHOLOGICAL SOCIETY CODE OF ETHICS GENERAL PRINCIPLES I RESPONSIBILITY

Members remain personally responsible for the professional decisions they make.

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(a) Members are expected to be cognisant of the reasonably foreseeable consequences of their actions and to endeavour to ensure that their services are used appropriately. (b) Members shall have ultimate regard for the highest standards of their profession. II COMPETENCE

Members shall bring and maintain appropriate skills and learning in their areas of professional practice. (a) Members must not misrepresent their competence, qualifications, training or experience. (b) Members must refrain from offering advice or undertaking work beyond their professional competence. III PROPRIETY

The welfare of clients and the public, and the integrity of the profession, shall take precedence over a member’s self interest and over the interests of the member’s employer and colleagues. (a) Members must respect the confidentiality of information obtained from clients in the course of their professional work. They may reveal such information to others only with the consent of the person or the person’s legal representative. However in those unusual circumstances where failure to disclose may result in clear risk to the client or to others, the member may disclose minimal information necessary to avert risk. Members must inform their clients of the legal and other limits of confidentiality. (b) Members must be sensitive to cultural, contextual, gender and role differences and the impact of those on their professional practice on clients. Members must not act in a discriminatory manner nor condone discriminatory practices against clients on the basis of those differences. (c) Members must refrain from any act that would tend to bring the profession into public disrepute. (d) Members must be mindful of the legal context in which they work, their obligations towards clients and employers, and their duties towards clients. (e) Where the demands of an organisation require members to violate this Code, members must •

clarify the nature of the conflict between the demands and these principles. They must inform all

•

parties of members’ ethical responsibilities and seek a constructive resolution of the conflict.

(Australian Psychological Society Code of Ethics, 2003, p. 1)

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• respect for the people they are working with, including respect for their autonomy and right to self-determination, and sensitivity to cultural and religious differences • beneficence for people and their communities (that is, maximising benefits and minimising risks involved in treatment, and the provision of service or support) • justice, both legal and moral, in the treatment of those they serve and the communities to which those people belong. The rules that apply to those in the helping professions are the same as those that apply to those conducting research, either with people with a disability or people in the general population (see, for example, Council for International Organisations of Medical Science, 2002; Nuffield Council on Bio-ethics, 2002), or specifically people with an intellectual disability (Dalton & McVilly, 2004). Other general sources of ethical guidance for human services include: • the Council of International Organisations of Medical Sciences and the World Health Organisation International Ethical Guidelines for Biomedical Research Involving Humans, 2002 • the European Union Directive on the Conduct of Clinical Trials, 2001 • the Nuremberg Code, 1947 • the United Nations Declaration on the Rights of Disabled Persons, 1975 • the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities, 1993 • the United Nations Universal Declaration of Human Rights, 1948 • the World Medical Association Declaration of Helsinki, 1964/2000. In Australia, the question of ethical practice and conduct is emerging as a priority issue in the delivery of human services. For example, the aged care sector has developed a formal code of ethics and guide to ethical conduct for providers of aged care services and direct care staff (Department of Health and Aged Care, 2001). The guidelines explain the rights and responsibilities of clients of aged care services, and make clear the accepted practices for the sector and the reasonable expectations that all involved (staff, employers, clients and their families) can have of each other. The guidelines

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include seven ‘value statements’, each of which is supported by ‘interpretative statements’ to assist in their implementation. The value statements recognise, for each person receiving a service: • the right to be treated with respect • the right to life, liberty and security • the right to have religious and cultural identity respected • the right of competent people to self-determination • the right to an appropriate standard of care to meet individual needs • the right to privacy and confidentiality • the right to be recognised as a social being with social needs. In Australia, government departments and some non-government organisations in the disability sector have codes of conduct for their staff. These codes sometimes include guidelines on ethical decisionmaking, and highlight important principles that staff should take into account when making decisions – principles such as respect for the person, fairness and equity. Some of them also specify actions that should or should not be carried out. Codes of conduct (in contrast to codes of professional ethics) are usually statements of specific behaviour to avoid and things that must be done rather than general statements describing accepted ethical practice; statements, as Young and Quibell (2002) propose, that make explicit the tradition of support work in a professional context. Examples illustrating the differences between codes of ethics and codes of conduct are given in box 10.3. All too often codes of conduct are dominated by, and reflect, organisational needs, such as the requirement to regulate people’s behaviour to avoid legal sanctions or provide a mechanism to discipline people who do not act precisely as the code dictates. Also, as Clegg (2000) warns, people can come to assume that simply following the rules to the letter is sufficient to establish ethical practice and ensure that only ‘good’ is done. Codes of conduct can be a necessary means of regulating staff behaviour, but they are insufficient to ensure ethical practice. For example, a code of conduct might require staff to ‘speak to clients with courtesy at all times’. This requirement is no guarantee that staff will behave ethically by ‘respecting clients, their views, values and needs’.

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BOX 10.3 • CODES OF ETHICS AND CODES OF CONDUCT EXTRACT FROM A CODE OF ETHICS

Value statement 4 Nurses hold in confidence any information obtained in a professional capacity, use professional judgement where there is a need to share information for the therapeutic benefit and safety of a person and ensure that privacy is safeguarded. (Australian Nursing Council, Royal College of Nursing & Australian Nursing Federation, 2002, p. 4). EXTRACT FROM A CODE OF CONDUCT

Public comment • Individuals have a right to give their opinions on political and social issues in their private capacity as members of the community. • Staff members should make sure that personal views are not presented or interpreted as Centre policy. • Staff members must not make official comment on matters relating to NSW Health unless they are authorised to do so by the Chief Executive Officer; or giving evidence in court; or authorised or required by law. • Staff members cannot release the contents of internal working documents or privileged knowledge unless they have the authority. • Staff members must get approval from the Chief Executive Officer before you use confidential information in public statements. (Royal Rehabilitation Centre Sydney, 2001, Policy 4.10).

Because workplaces are complex, codes of conduct cannot hope to specify or cover all possible situations. They can only ever be a guide to ethical behaviour. Any final decision about how to act must be left to the informed conscience of the individual professional, ideally in consultation with peers and, importantly, other people who will be affected by the decision, such as clients and members of their family. Some of the important principles that guide service provision and are related to ethical practice are discussed in chapter 3. Codes of conduct and codes of ethics do not provide guarantees of good conduct, but their presence serves to heighten people’s awareness of important ethical issues. They can foster discussion and debate about difficult issues, with a view to developing collective resolutions on appropriate action. They can increase vigilance in the monitoring and enforcing of standards of practice. Codes of ethics can provide a shared language to promote and enable communication within a profession about what constitutes good practice,

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and acceptable or unacceptable practice, as well as communication between the profession and others, such as clients and the community in general. As Owen, Sales, Griffiths and Richards assert: developing a code of ethics is a vital step in the professional evolution of a rapidly changing and highly pressured field in human services [the support of people with a disability]. Without it, community professionals, their managers, supervisors and administrators are left to address complex dilemmas on a functionally ad hoc basis. Such circumstances, at best, fuel confusion and, at worst, invite abuse. (2001, p. 167)

Here it is important to recognise that what we do and how we behave, in both our personal and our professional lives, is greatly influenced by our personal values and beliefs, the values and beliefs of those around us, and the law. For example, if we believe our role is solely to ‘care’ for clients we might do all we can to ensure that their house is clean and tidy and that they have a balanced diet. However, if we believe our role is primarily to ‘support’ clients in community living, we might direct our efforts to assisting clients to tidy their house as well as they can, provide good examples of healthy food choices, then use our time to support them to participate in other activities, even though the house might not be as tidy or meal choices as healthy as we would like. In any one household different staff, residents and family members hold different values and beliefs about what is important to get done and how to get it done ‘properly’. The important role that ethical reflection can play in mediating the diverse range of values and beliefs held by workers, mangers, people with a disability and their families, and facilitating their transformation into quality outcomes for clients, is shown in figure 10.1. Figure 10.1 suggests that to achieve quality outcomes for clients we need to identify a range of values influencing direct support professionals from which we could develop a professional code of ethics for direct support staff. Such a code could be used to inform individual organisational codes of conduct, which in turn would provide direction concerning day-to-day decisions and, together with the knowledge and practical experience of direct support professionals, shape the actions of staff in a way that contributes to quality outcomes for clients. It is important to recognise the differing beliefs, values and priorities in our community, and how these influence the ethical priorities and considerations of different people and, in turn, different organisations. These differing ethical considerations translate into different

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FIGURE 10.1 THE CONTRIBUTION OF VALUES, ETHICS, EDUCATION AND EXPERIENCE TO QUALITY OUTCOMES FOR CLIENTS (from McVilly, Martin-Nixon & Neville, 2003, p. 6) Quality outcomes for clients

Professional actions

Informed decisions

Education and knowledge

Experience and skills Organisational code of conduct

Direct support professional’s code of ethics

Personal values; professional values; organisational values; community values and the law

policies and procedures across organisations. This diversity allows for the development of organisations to serve the needs of specific people – for example, organisations that subscribe to a particular religious ethic, such as L’Arche (2004) or Jewish Care (2004), as well as those that adopt a secular ethic (that is, a belief system not based on a particular religious belief), such as government-run services. However, people working for one organisation do not always understand or appreciate why their colleagues from another agency work the way they do. As a result, people can be unfairly critical of their colleagues without really understanding the different ethical principles

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underpinning their decisions. This can lead to conflict between workers from different agencies, which in turn can undermine the overall quality of the service received by clients. For example, one organisation might choose to emphasise the safety of a client travelling in the community by insisting that a worker accompany the client on all bus trips, and justify this by pointing to the importance of the organisation’s duty of care towards the client. Another organisation involved with the same client might emphasise opportunities for the client to exercise independence, even where this might expose them to what that organisation considers an acceptable level of risk, and consequently not provide travel assistance beyond a basic travel training program. This might be justified by pointing to the importance the organisation places on respecting a client’s ‘dignity of risk’. Both organisations hold strong beliefs about what constitutes ethical practice in supporting the client. It is just that their different values and beliefs lead them to implement different practices when it comes to acting in what both believe to be the client’s best interests. It is possible for staff working across different agencies (casual staff, for instance) to become confused as to what is expected of them. For example, the manager in one organisation emphasises the importance of staff spending time teaching skills such as reading and writing, while the manager in another organisation considers that staff time should be spent in supporting clients to participate in recreational activities and options that increase their social networks. If all staff, whatever agency they work for, used a nationally accepted code of professional ethics for direct support professionals, the likelihood of conflict could be minimised; or, if it occurred, the code could provide a common set of principles from which to discuss and resolve it. When developing a set of professional ethics, it is possible to draw on the codes of ethics governing other organisations, professions and research activities. However, as Smith and Fitzpatrick (1995) observe, difficulties arise when practitioners of one discipline or orientation make judgments about appropriate or inappropriate conduct on the part of those from another discipline or orientation. For that reason, while existing codes of ethics could be informative for direct support professionals, it is not appropriate for one or other existing code to be adopted outright. Rather it is up to disability support professionals themselves to, as Young & Quibell (2002) put it, ‘make explicit their own tradition’ (p.8), and to spell out their values and the ethics that flow from them.

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More than just another set of rules? Lindsay (1996) describes the content and the purpose of ethical statements as spanning a continuum. An outline of this continuum is shown in figure 10.2. At one end of the continuum is the prescription of rules. This is most commonly seen in a code of conduct. The purpose of a code of conduct is to regulate behaviour by stating the agreed ‘dos and don’ts’ of a profession or an organisation. At the other end of the continuum is the outline of broad principles or values or aspirational statements. This is most commonly seen in a code of ethics. The purpose of a code of ethics is not to spell out all the ‘dos and don’ts’, but to help people think through issues they confront in their practice on the basis of widely agreed principles, then to plan appropriate responses to these issues. FIGURE 10.2 THE CONTINUUM OF ETHICAL STATEMENTS (described by Lindsay, 1996) Codes of conduct

The purpose:

The content:

The regulation of behaviour through the application of and adherence to regulations

The prescription of rules

The promotion of optimal behaviour through thoughtful reflection

An outline of principles, values and aspirations

Codes of ethics

Professional ethics, then, can take the form of specific statements or rules addressing practical questions that people might ask about what to do in complex situations – for example, whether to keep something a client has told you confidential, or report it to your

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manager or police; or to implement or not implement a procedure or program with a client if there is a chance it might harm them or affect their right to self-determination. In these situations, ethics are usually concerned with defining the boundaries of acceptable behaviour – what is the right or wrong thing to do. The following definitions of ethics provide further clarification: • ethics are a set of guidelines that provide directions for conduct (Koocher & Keith-Speigel, 1985, p. xiii) • ethics serve to identify good, desirable or acceptable conduct and provide reasons for those conclusions (NHMRC, 1999, p.1). Ethics can also be concerned with the bigger picture, independent of the specifics of particular situations – for example, consideration of the connection between disability, suffering and quality of life (see Reinders, 2003). Ethical conduct need not be just about learning and adhering to a set of rules. It can be about reflecting on a personal or professional experience and debating that experience with others to develop a deeper understanding of the situation. Clegg (2000) gives examples of questions that might arise from such reflection: • Why are things the way they are for you? • Why might other people come to different views or opinions based on their life experience and personal values? • How can acting on those different values and beliefs effect others? Of course, such ethical debate is only possible where people are prepared to behave and treat each other ethically – that is, act justly and fairly, show openness, truthfulness and honesty, and respect differing views and values. The importance of open and honest communication is further explored in chapter 14. Many of the disputes that arise in the day-to-day provision of services involving clients, their families, staff and managers arise as a result of people’s failure to act ethically towards each other, and to listen to each other and engage in reflection on both their perspective and that of others. On this point, Owen et al. (2001) assert that ‘of more importance than a series of “rules”, is training professionals about ways to make ethical decisions’ (p.166). The first step in resolving differences of opinion or disputes based on opposing ethical positions is to appreciate that people can

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evaluate a situation and come to an ethical decision based on different ethical principles. Two principles that have strong application in decisions concerning the support of people with a disability are the ethic of justice and the ethic of care. It is useful to see how these two belief systems can be formed, justified and applied by someone faced with a decision and give rise to two very different results, both of which could be considered ethical (Rice, 2001). The ethic of justice and the ethic of care

The ethic of justice was developed by Kohlberg (1976). The original study on which the ethic of justice was based involved interviews with 84 men. Each participant was given a hypothetical dilemma and asked if the main character in the story ‘did the right thing’, and to explain why they came to that conclusion. From the responses, a six-stage hierarchy of moral development was proposed, together with a theme and rule for each stage: 1

Punishment and obedience The right thing to do is that which will not end in punishment.

2

Instrumental exchange The right thing to do is that which is done (for another) in exchange for something that is desired (that is, there is a fair exchange).

3

Interpersonal conformity The right thing to do is what one is expected to do by significant others.

4

Social systems The right thing to do is that which is best for society as a whole (that is, what leads to the greatest good for the greatest number of people).

5

Prior rights The right thing to do is to follow prescribed social rules and expectations, which automatically protect the rights and interests of all.

6

Universal ethical principles The right thing to do is that which is based on certain widely held beliefs or ethical principles.

Here it should be noted that Kohlberg’s intent was to suggest that the various stages of moral decision-making reflected differing levels of moral maturity in the person making the decision. The ethic of care was developed by Gillian (1977) as an alternative view to that presented by Kohlberg. Twenty-four women, all of whom were considering the termination of their pregnancy, were

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interviewed. From their interview transcripts, in which they reflected on their own personal circumstances, a five-stage hierarchy of moral development was proposed: 1

Caring for self The right thing to do is that which ensures survival of the self.

2

Survival to responsibility The right thing to do is to consider the survival of the self and the needs of others.

3

Caring for others The right thing to do is that which is best for others, regardless of the needs of the self.

4

‘Goodness to truth’ about relationships This goes beyond doing good for others to doing what truthfulness demands, regardless of what might be good and caring for others. The right thing to do is that which is above all truthful and honest, regardless of the needs of the self or others.

5

Caring for self and others The right thing to do is to select a truthful and honest course of action, after considering how the decision will affect both the self and others.

Like Kohlberg’s schema, Gillian’s various stages of ethical decisionmaking imply a hierarchy of moral maturity. A person could reach an ethical decision of what was best to do by applying either the ethic of justice or the ethic of care. If they used the ethic of justice, they would probably consider issues that were predominantly concerned with rules, laws and calculations. For example, in considering the issue of abortion of a foetus with an identified genetic abnormality, a person applying the ethic of justice might be most concerned with issues such as: • financial and emotional demands on a family • family quality of life • cost to society through health and social services • the costs and benefits of eliminating defective genes from the human gene pool • right of the foetus to be born healthy and free from potential suffering. In contrast, a person applying the ethic of care might choose to focus on issues such as: • the potential dangers to the mother

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• possible complications of future pregnancies as a result of surgical or chemical intervention • whether all people are beneficial to society, regardless of abilities. Furthermore, the ethical decision to which a person might come will not only be influenced by their choice of a particular ethical framework, but also their phase of moral development within their chosen framework. This could be greatly influenced by their age and life experiences.

The ethics of staff–client relationships Personal relationships can be very difficult to negotiate at work, at home and in our social life. Often difficulties arise when we attempt to understand and accommodate the differing beliefs, values and ethical standards of colleagues, family members and friends. No two people are exactly alike, and even in the most cohesive of teams, in the most tight-knit of families, and among the closest of friends, differences arise. Differences can be easier to resolve, or at least negotiate, when there is only a single type of relationship involved. We might accept a colleague’s different views when the extent of our relationship with them involves working with them at certain times during the week. We might accept a family member’s different views because we consider cohesion among family members is more important than ‘proving them wrong’. We can accept the different views of a friend, or we can simply choose to end the friendship and not see them any more. However, major problems can arise when there is more than one dimension to our relationship with a particular person. For example, if we have a falling out with a friend with whom we also work, we can’t simply choose not to see them any more, unless we are prepared to resign from our job. And if we are not getting on well with that friend socially, it might impair our ability to work effectively with them during business hours. Similar difficulties arise when staff and their clients develop relationships (such as friendships) in addition to the client–service provider relationship. Such situations are referred to as ‘dual relationships’. Owen et al. (2001) suggest that: dual relationships present one of the most challenging ethical dilemmas facing community professionals, particularly those working in residential services. Lack of clarity on this issue may contribute to circumstances that can lead to abuse, especially in the absence of training in ethical decision making. (p.164)

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Dual relationships can easily arise between clients and their caring staff, particularly in community residential services, where role boundaries are not always clear (Kagle & Giebelhausen, 1994; Ozar, 1998). In the execution of their duties, community support staff commonly exhibit many of the features or characteristics associated with personal friendships; for example: • frequently going to the person’s home • providing assistance with personal matters • accompanying the person on shopping and social outings • providing emotional comfort and personal advice. Also, it is well established that the social lives of people with a disability are commonly characterised by loneliness and few if any opportunities to make friends with people outside their home (Emerson & McVilly, 2004). Caring staff are often the most readily accessible people with whom to forge friendships. Dual relationships would be considered unethical when: • the secondary relationship – the personal friendship – has an adverse impact on the primary, professional relationship, or • power imbalances between the staff and the client are not acknowledged or effectively addressed (Smith & Fitzpatrick, 1995). Power imbalances between parties to a relationship can emerge from a variety of factors: age, gender, education, socioeconomic status, physical health, mental health. For example, an older lady with minimal education, a physical disability and poor mental health could be highly dependent on her support staff for day-to-day assistance. If she and her staff-friend were to go out together on the weekend and subsequently had a disagreement, how might this affect their professional relationship for the rest of the week? If this person lived in supported accommodation with several other people, might other residents perceive a degree of favouritism towards her when her staff-friend was on duty? How might this affect relationships among the residents themselves? And if the client told her staff-friend ‘a secret’, ‘in confidence’, as a friend, and this involved something serious affecting her support, how should the staff member act – as a friend, respecting her confidence, or as a staff member, reporting the information to a supervisor? And if the ‘confidence’ was broken by the staff member reporting the information to the supervisor, how might this affect the friendship?

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Figure 10.3 shows the tension that can arise as staff and clients attempt to negotiate a dual relationship. As greater emphasis is placed on the personal relationship, there is increasing risk of an ethical dilemma occurring. The figure also suggests that where there is greater emphasis on the professional relationship – that of client–support professional – there is less risk of an ethical dilemma occurring. FIGURE 10.3 THE PROFESSIONAL RELATIONSHIP CONTINUUM (from McVilly, 2000) High risk of ethical dilemma

Being a professional and a personal friend

Emphasis on personal relationship

Being a friendly professional

Emphasis on professional relationship

Being a professional

Low risk of ethical dilemma

Here, though, there are trade-offs to be considered. As you reduce the risk of an ethical dilemma emerging by emphasising the professional orientation of the staff–client relationship, you also reduce the potential positive gains that could emerge for both parties out of a close personal friendship. If you increase the emphasis on fostering the personal relationship between the staff member and the client, with the many benefits that could come from a close personal friendship, you also increase the risk of an ethical dilemma that could compromise the client’s care and even the staff member’s future employment. There is evidence to support the case that meaningful, rewarding and enduring friendships that are safe for both parties can emerge between people with an intellectual disability and those providing care or assistance (see, for example, Pottie & Sumarah, 2004). However,

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there is no escaping the fact that where a person works as a professional, the considerations associated with their developing a friendship with a person they are paid to support are necessarily complicated, and require both careful management and ethical consideration (Yamaki & Yamazaki, 2004). Box 10.4 describes a situation that raises the potential for an ethical dilemma. As you read you may wish to think about the dilemmas that could arise and what Allen should consider.

BOX 10.4 • SUSAN’S STORY Susan is in her 30s. She lives on her own, with twice-daily drop-in support. She attends a hospitality course at TAFE and has been undertaking work experience at the local supermarket. To assist her in getting to and from both TAFE and work experience, a support professional, Allen, has been allocated to provide a formal travel training program. Allen has been working with Susan on the program for all of the TAFE term. About a week before the end of the term Susan asks if Allen is going to continue to see her during the holiday break because, she says, ‘you are my only friend and I’ll miss you’. Allen has very much enjoyed working with Susan, and says she is a good friend – more than just another client. He has some ideas about places other than TAFE and work that she might like to go, and he thinks that this would be a good opportunity to help her generalise her travel training skills. Also, she has no plans for the TAFE holiday, and would be spending much of her time alone at home. On the last day of the TAFE term, Allen tells Susan that he will be on holiday too during the next week, and that he can see her on Tuesday when he will show her how to catch the bus to go to the movies.

Ethics for direct support professionals Research reveals that support staff are aware of, concerned with and want to know more about ethical issues in their day-to-day practice, and they are interested in how to address these in a professional way (Oliver, Yutrzenka & Redinius, 2002). To help staff work through these issues, a number of attempts have been made to draw together and codify the ethics of direct support. Two examples are the US National Alliance of Direct Support Professionals (2000) Code of Ethics and the UK General Social Care Council’s (2002) Code of Practice for Social Care Workers. Given the absence of any agreed code of ethics for direct support staff in Australia, the main principles from these two codes of ethics are discussed below.

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BOX 10.5 • EXTRACT FROM THE CODE OF ETHICS OF THE NATIONAL ALLIANCE FOR DIRECT SUPPORT PROFESSIONALS KEY AREAS FOR ETHICAL REFLECTION

INTERPRETIVE STATEMENT

1 Person-centred

‘I will recognise that each person must direct his or supports her own life and support and that the unique social network, circumstances, personality, preferences, needs and gifts of each person I support must be the primary guide for the selection, structure, and use of supports for that person.’ ‘I will develop a relationship with the people I support that is respectful, based on mutual trust, and that maintains professional boundaries.’

2 Promoting physical and emotional well-being 3 Integrity and responsibility 4 Confidentiality

5 Justice, fairness and equity 6 Respect

7 Relationships

8 Selfdetermination 9 Advocacy

‘I will be conscious of my own values and how they influence my professional decisions.’ ‘I will seek information directly from those I support regarding their wishes in how, when and with whom privileged information should be shared.’ ‘I will help the people I support use the opportunities and the resources of the community available to everyone.’ ‘I will seek to understand the individuals I support today in the context of their personal history, their social and family networks, and their hopes and dreams for the future.’ ‘I will advocate for the people I support when they do not have access to opportunities and education to facilitate building and maintaining relationships.’ ‘I will work in partnership with others to support individuals leading self-directed lives.’ ‘I will support individuals to speak for themselves in all matters where my assistance is needed.’

(National Alliance for Direct Support Professionals, 2000)

The National Alliance of Direct Support Professionals The National Alliance for Direct Support Professionals is a collaboration of organisations across America that focus on promoting the development of a highly competent and professional workforce to support people with a disability. It has identified nine key areas for ethical reflection, particularly relevant to staff supporting people

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BOX 10.6 • EXTRACT FROM THE CODE OF PRACTICE FOR SOCIAL CARE WORKERS FROM THE GENERAL SOCIAL CARE COUNCIL KEY ETHICAL AREAS

REGULATORY STATEMENTS

1 Protect the rights and promote the interests of service users

This includes treating people as an individual.

2 Strive to establish and maintain the trust and confidence of service users and carers 3 Promote the independence of service users while protecting them as far as possible from danger or harm

This includes being honest and trustworthy.

4 Respect the rights of service users whilst seeking to ensure that their behaviour does not harm themselves or other people

5 Uphold public trust and confidence in social care services 6 Be accountable for the quality of their work and take responsibility for maintaining and improving their knowledge and skills

This includes promoting the independence of service users and assisting them to understand and exercise their rights. This includes recognising that service users have the right to take risks and helping them to identify and manage potential and actual risks to themselves and others. In particular you must not abuse, neglect or harm service users, carers or colleagues. This includes meeting relevant standards of practice and working in a lawful, safe and effective way.

(General Social Care Council, 2002)

with a disability. These key areas are presented as statements of commitment made by individual members of the association. Each of these ethical statements is in turn supported by interpretative statements designed to guide staff in their practical implementation. The key areas are listed opposite in box 10.5, with one of the interpretive statements for each area. The General Social Care Council The General Social Care Council was established under legislation of the English parliament. It is responsible for establishing and main-

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taining a national code of practice for staff involved in supporting children, the elderly and people with a disability. It is also responsible for the registration of these staff and the oversight of their conduct, whether they work in government or non-government agencies. The council has identified six key areas for ethical reflection. These key areas are presented as regulatory statements describing what social care workers must do. The statements and an example of workplace behaviour to address the statement appear in box 10.6 on the previous page. Making an ethical decision Clearly the possible ethical dilemmas that could be encountered by a direct support professional across their working life are innumerable. Furthermore, every situation that presents itself is in some way unique. It is not possible to provide a definitive book of answers to all possible ethical questions. However, it can be useful to apply a decision-making framework in working through these ethical dilemmas; or, ideally, when making decisions in an attempt to avoid ethical dilemmas. Paliwoda (2002) proposes that to come to an ethical decision a number of issues should be considered: • All relevant information needs to be available, and if it is not available more questions need to be asked. • All stakeholders’ interests and priorities need to be taken into account, not just the interests of those making the decision. • The full implications of the decision for all concerned should be explored, including consideration of any potential adverse events. • Ethical principles, organisational policies and the law must be taken into account. Paliwoda emphasises the importance of maximising the participation of all stakeholders in decision-making processes, and of explaining to them the reason for the final decision. Longstaff (1997) proposes six ‘filters’ or questions that can be asked by a person seeking to make an ethical decision: • Would I be happy for this decision to be on the public record; for others to know that I made the decision and for it to be open to questions by them?

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• What would happen if everybody did this; if it were to be the norm or the typical thing for people everywhere to decide to do? • How would I like it if someone decided that on my behalf, or to do it to me? • Will the decision result in something good; and what is the reason for considering this to be a good outcome? • Is the proposed course of action consistent with my values and principles, or the stated mission and values of my organisation? • What will the proposed course of action do to my character, or the character of my organisation; will it set a precedent for good decisions in the future? If the answers to these questions are positive, it is likely that the decision is an ethical one. It is possible to combine Paliwoda’s and Longstaff’s points, along with the material presented in this chapter, to produce a guide to ethical decision making in your everyday work. You may find it helpful to apply the following twelve questions to any ethical decision you need to make: 1 What decision is to be made?

This is not always as clear as it may seem at first. It can be very helpful to reflect on and discuss the question with a number of people who might see the issue from different perspectives. There might in fact be several different issues in question and several separate decisions to be made. 2 Who is (or should be) involved in making the decision, and what are their priorities or interests?

There are many decisions that need not (and should not) be made by a single person. Consultation can be a very important part of coming to an ethical decision. Decision-makers working on their own rarely make objective decisions. Usually people come to the situation with preconceived values, ideas and interests. These biases need not detract from the ethical decision, but they do need to be openly acknowledged. 3 Who might be affected by the decision, and what are their priorities or interests?

Often the implications of a decision will affect several people, including those making it. All these people need to be identified.

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The implications for any groups of people, organisations or the wider community also need to be considered. 4 What are the options?

Usually there are several options to be considered. Each of these options and the resources necessary to realise them must be identified. You might dismiss some options because they are not practicable or could take a long time to implement. However, an option that is not easy to implement might be the more ethical, and perhaps more effort should be applied to it to achieve an ethical outcome. Conversely, if the resources to do something properly are not available, even if you think it would be the best thing to do, it could be unethical to proceed, and you may need to take the second best option and implement it properly. 5 What are the possible outcomes for each option, for all stakeholders?

Each of the available options could have a number of outcomes. There can also be different outcomes for each of the people involved, including the person about whom the decision is to be made, the person making the decision, any groups or organisations involved and the wider community. Documenting each possible outcome and how it might affect the various stakeholders can help to make clear the ethics of the situation and the different values or principles that need to be considered. 6 What is the worst-case scenario that could result from each option?

It is all too easy to be wise with hindsight. While there is no need to be melodramatic and you must be realistic, it is important to consider what could happen if something went wrong as a result of your decision, and the ethical implications attached to misadventure involving disappointment, distress, legal sanctions, injury or death. 7 Are there any principles, policies, procedures or laws that should be taken into account?

You should always find out whether there are any established guidelines to inform your decision. Sometimes an organisation or the community have already considered the issues in question and provided specific instructions on how to act in a particular situation. Where there are explicit policies, procedures or laws, you need to consider the ethical implications of following or not following these. It is at this point that you could refer to relevant ethical guidelines, such as those of the National Alliance of Direct Support Professionals or the General Social Care Council discussed on pages 262 and 263.

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8 Is there enough information available to make an informed decision?

You might need to get more information or involve other people in the process, even if this means delaying the decision. (You also need to consider whether there are ethical implications in delaying the decision.) 9 Can the decision be explained or justified to those involved?

Considering how you might explain and justify the decision to stakeholders is often a good way of checking whether you have been thorough in the processes you have adopted in order to come to an ethical decision. Working out what you might say to stakeholders can often help you to anticipate their questions and make sure you have all the relevant answers to hand. 10 Would others who had the same information available to them understand why the decision was made?

Where an ethical decision is to be made, the reasons for that decision – its justification – and the path by which it was reached should be self-evident. People should be able to see the logic of the decisionmaking process and test your arguments to see if they are valid. 11 Does the decision set a precedent or an agenda for future decisions?

Decisions are rarely made in isolation. There are often implications for future decisions. Sometimes a decision might seem easy to make until you consider how you would make such a decision again in the future or, given similar circumstances, on repeated occasions. 12 Can I live with this decision; am I truly at peace with it?

Arguably, the benchmark for any ethical decision is the degree to which the person making it is at peace with the decision, or whether they have regrets. Of course, this measure of ethics is only valid when applied by people who are themselves fundamentally ethical – people who value the importance of behaving justly and fairly, being open, truthful and honest, and being respectful of others.

Conclusion This chapter has examined the complexity of the role of disability support staff. It has discussed recent attempts to address the many challenges associated with this demanding work through the gradual professionalisation of the disability workforce. This growing emphasis on professionalisation has led to increased expectations in regard

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to the knowledge, skills and qualifications that should be possessed by direct support staff. Importantly, there is also an increased expectation that direct support staff will engage in reflective practice and act ethically. The chapter has discussed what ethics are, by drawing on examples from codes of ethics of established human service professions in Australia, as well as codes of ethics from overseas developed specifically for disability support professionals. The fact that different people and different organisations work from different values has been discussed, together with the problems that can arise when these competing values and beliefs affect decisions that have to be made in relation to the support of people with a disability. A variety of ethical principles have been presented, as a resource to guide disability support professionals in making ethical decisions, as well as a series of questions that form a decision-making framework to help disability support professionals make decisions with ethical implications.

Learning activities 1

Does the description of a professional on page 243 currently fit the role of disability support staff?

2

Should disability support staff be referred to as disability support professionals? If so, what do they need to do to assume such a title?

3

How could professionalisation improve the disability workforce? Might there be some disadvantages in this process, and how could these be addressed?

4

Do you already use ethics to guide decisions you make in your personal or family life? What are those guiding ethics, and how did you come to develop them?

5

Do you already use ethics to guide what you do in your work practices? What are those guiding ethics, and how did you come to develop them?

6

Think about a time when you and another person had a difference of opinion because of your differing values or beliefs. Why did you think you were ‘in the right’, and why might they have thought they were ‘in the right’? How did your beliefs, values

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and ethical principles differ? Were you able to resolve these differences, and why? 7

What are the similarities and differences between the US National Alliance of Direct Support Professionals Code of Ethics and the UK General Social Care Council’s Code of Practice for Social Care Workers? Could any of the ethical principles in these two codes be applied to the support of people with a disability in Australia?

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Pottie, C. & Sumarah, J. (2004). Friendships between persons with and without developmental disabilities. Mental Retardation, 42, 55–66. Reinders, H. (2003). Introduction to intellectual disability, genetics and ethics. Journal of Intellectual Disability Research, 47, 501–4. Rice, C. (2001). Making moral decisions: Comparing two theories. Mental Retardation, 39, 155–7. Royal Rehabilitation Centre Sydney (2001). The code of conduct (Policy 4.10). Sydney: Royal Rehabilitation Centre Sydney. Sigafoos, J., Arthur, M. & O’Reilly, M. (2003). Challenging behaviour and developmental disability. London: Whurr. Smith, D. & Fitzpatrick, M. (1995). Patient–therapist boundary issues: An integrative review of theory and research. Professional Psychology, 26, 499–506. Test, D., Flowers, C., Hewitt, A. & Solow, J. (2003). State-wide study of the direct support staff workforce. Mental Retardation, 41, 276–85. Test, D., Flowers, C., Hewitt, A. & Solow, J. (2004). Training needs of direct support staff. Mental Retardation, 42, 327–37. The Nuremberg Code (1947). Trials of war criminals before the Nuremberg Military Tribunals under Control Council Law No. 10, Vol. 2 (pp. 181–2). Washington, DC: US Government Printing Office. Thomas, J. (1994). Quality care for individuals with dual diagnosis: The legal and ethical imperative to provide qualified staff. Mental Retardation, 32, 356–61. UN see United Nations United Nations (1948). The United Nations Universal Declaration of Human Rights. New York: UN. United Nations (1975). The Declaration on the Rights of Disabled Persons. New York: UN. United Nations (1993). The Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. New York: UN. World Medical Association (2000). The Declaration of Helsinki. Helsinki, Finland: WMA. Yamaki, C. & Yamazaki, Y. (2004). Instruments, employees, companions, social assets: Understanding relationships between persons with disabilities and their assistants in Japan. Disability & Society, 19, 31–46. Young, D. & Quibell, R. (2002). Disability support workers and professional traditions. Intellectual Disability Australasia, 23, 4, 5–8.

11

Services: availability, issues and models Roger J Stancliffe

Learning objectives After reading this chapter and completing the activities you should be able to: • understand how specialised disability services are provided within a context of generic community services used by people with a disability • demonstrate familiarity with the range of specialist services and supports available to adults with a disability • recognise that adults with a disability use ordinary (nonspecialised) community services • appreciate that there is substantial unmet need for most service types • describe a range of support service approaches.

Introduction This chapter examines generic and specialist disability services used by people with a disability, with a particular focus on accommodation support services. There is a wide range of services for people with a disability; examples include employment, community access, respite and advocacy. While each of these service types is important in its own right and this chapter gives information on their broad patterns of use, it is not possible to go into detail about all the issues relevant to

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each service type. That would require a book on its own. Instead, this chapter concentrates on accommodation support services. This approach is taken for two reasons. First, accommodation services for people with a disability have been provided since the 19th century, and they are of interest because of the ways in which they have evolved in recent times. A second reason is that there is a wealth of recent research on accommodation support services that may inform our practice. Although the focus of this chapter is on accommodation services, you will find that many of the issues discussed are relevant across the full disability service spectrum.

Generic community services It is important to recognise that people with a disability use ordinary community services. Generic services are services available to the general community, such as hospitals, schools and public transport. As community members, people with a disability are entitled to access these services. Public transport, taxis, schools, hospitals, libraries, courts, shopping centres and so on all need to be accessible to people with all types of disability. This means: • being physically accessible • providing information so that people with various disabilities can understand it • having a positive attitude toward serving people with disabilities. Alana’s story in box 11.1 illustrates some of the experiences people with a disability can have when using generic services, such as public transport. While ever some generic services are not accessible to people with disabilities, their lives will be restricted. Because generic service providers deal with people with a disability so frequently, they need the skills and knowledge to do so effectively. There are numerous approaches to help generic service providers. One example is training police officers to recognise people with an intellectual disability so that they can have a support person present to help them in their dealings with police. Another is providing structured health records and checklists of needed tests so that doctors get reliable information about the person’s history and current symptoms, and so that people with special health needs get the right tests and treatment.

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BOX 11. 1 • ALANA’S STORY: USING PUBLIC TRANSPORT Alana is in her 20s, and lives with her partner in a one-bedroom ground floor apartment in suburban Sydney. As a result of spina bifida and hydrocephalus, Alana’s movement and mobility is severely restricted, and she uses an electric wheelchair throughout the day. Alana does not drive and her partner’s car does not have any special equipment to accommodate her wheelchair. In any case, her partner works full-time on weekdays. So Alana relies on public transport to get around the community. Alana spoke about her experiences using accessible buses, accessible taxis and planes. BUSES

I used to use buses a lot, but not so much any more. After we moved [to where we live now] I found the buses on these routes to be unreliable: sometimes there is an accessible bus (usually when you don’t need one), but many buses are not accessible so I can’t use them. When you want an accessible bus to come along they seem as rare as hens’ teeth. I am told that all buses have to be accessible by 2010, but I’ll need to see it to believe it. TAXIS

Taxis are really unreliable unless you’ve got your own driver who you can count on. I ring Raphael on his mobile and, if he can do the job, I have no problems. But even Raphael has days off or gets sick, so I sometimes also use another driver who is a friend of his. Just the other day I missed an appointment to have a splint made for my arm. I rang Raphael three days before, but he couldn’t do it. I tried his friend but he was unavailable as well. So I rang the taxi radio room the day before and booked a taxi. When no-one had turned up 15 minutes before my appointment I rang again and was told that they were still looking for a cab, but they hadn’t even bothered to ring me to let me know. So I missed another appointment. Raphael is also great as an ambulance. If I need to go to hospital I ring him, because ambulances can’t take my wheelchair, and it is much easier and more comfortable for me to travel in my chair. PLANES

A couple of years ago on an interstate trip, a regional airline just refused to take me because I didn’t have a non-disabled travelling companion. I was so angry! I rocked up to the airport with my ticket and they took one look and said no way. Since then airlines seem to have got a lot better because staff are a lot more disability savvy. It is rare these days for staff to be rough or impolite (eg, grabbing you without asking first). I guess that I’m also better at explaining to the staff what to do and at bringing along my own equipment.

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Even though things are better, it is still time-consuming and needs lots of planning. My wheelchair has to be disassembled and carried as luggage and you have to be careful that someone doesn’t put it together the wrong way and stuff it up. Depending on how the airline seats are set out in the plane, I cannot fit on some planes, so I tend to travel with just one airline. Unfortunately, it’s not the cheapest one!

Specialist disability services Theoretically, if generic services were fully available to people with a disability, the need for specialist disability services would be minimised. However, people with disabilities may need support to access generic services. For example, people with an intellectual disability often need assistance when using banks, and may require more assistance than is usually available from bank staff. Specialist disability services are needed when generic services are inappropriate or insufficient to meet the needs of people with disabilities. The distinction is not always clear cut, and the situation is changing as more and more generic services become accessible to the entire community, including people with disabilities. For example, accessible buses that are reliably available enable wheelchair users to take this form of public transport. Previously they may have had to use specialist transport or remain isolated at home (see Alana’s story, box 11.1). Specialist disability services must be viewed within the broader context of generic service provision. It is common for both generic and specialist disability services to be funded by governments. Government-funded services to people with a disability include: • income support (for example, the disability support pension) • disability services • generic services provided to the entire community, including people with a disability. In Australia, services specifically for people with a disability were funded under the Commonwealth State Disability Agreement (CSDA) and are currently funded under the Commonwealth State/Territory Disability Agreement (CSTDA) (FACS, 2004), as well as through Home

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TABLE 11.1 SERVICE GROUPS AND SERVICE TYPES COVERED BY THE CSDA (adapted from AIHW, 2003, box 2.2) -iÀۈVi }ÀœÕ«

iÃVÀˆ«Ìˆœ˜

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>À}iÊÀiÈ`i˜Ìˆ>Éˆ˜Ã̈ÌṎœ˜Æ Ó>ÊÀiÈ`i˜Ìˆ>Éˆ˜Ã̈ÌṎœ˜Æ …œÃÌiÆÊ}ÀœÕ«Ê…œ“iÆÊ>ÌÌi˜`>˜ÌÊ V>ÀiÉ«iÀܘÊV>ÀiÆʈ˜‡…œ“iÊ >VVœ““œ`>̈œ˜ÊÃÕ««œÀÌÆ >ÌiÀ˜>̈ÛiÊv>“ˆÞÊ«>Vi“i˜ÌÆÊ œÌ…iÀÊ>VVœ““œ`>̈œ˜ÊÃÕ««œÀÌ

œ““Õ˜ˆÌÞÊ ÃÕ««œÀÌ

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/…iÀ>«ÞÊÃÕ««œÀÌÊvœÀʈ˜`ˆÛˆ`Շ >ÃÆÊi>ÀÞÊV…ˆ`…œœ`ʈ˜ÌiÀÛi˜‡ ̈œ˜\ÊLi…>ۈœÕÀÉëiVˆ>ˆÃÌÊ ˆ˜ÌiÀÛi˜Ìˆœ˜ÆÊVœÕ˜Ãiˆ˜}Ê ­ˆ˜`ˆÛˆ`Õ>É}ÀœÕ«Év>“ˆÞ®ÆÊ Ài}ˆœ˜>ÊÀiÜÕÀViÊ>˜`ÊÃÕ««œÀÌ Ìi>“ÃÆÊV>Ãiʓ>˜>}i“i˜Ì]ʏœV>Ê VœœÀ`ˆ˜>̈œ˜ÊEÊ`iÛiœ«“i˜ÌÆ œÌ…iÀÊVœ““Õ˜ˆÌÞÊÃÕ««œÀÌ

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and Community Care (Department of Health and Ageing 2004) and rehabilitation funding. At the time of writing, the agreement provides for the Commonwealth to manage funding for employment services, and for the states and territories to administer funding for accommodation and other support services. Responsibility for the administration of advocacy and research activities is shared. Australian specialist disability (CSDA-funded) service groups and service types are shown in table 11.1. The services listed in table 11.1 are mostly provided to adults, although this varies according to the service group. Accommodation support, community access, and employment are overwhelmingly services for adults, whereas community support and respite serve both adults and children. The number of Australian service users in 2002 by age group and service group is shown in figure 11.1. Government-funded specialist disability services may be government or non-government operated. Non-government services also use funding from other sources (such as fundraising) to supplement government funding. In Australia, significant percentages of consumers use government-operated services for accommodation support (38%), community support (46%) and respite (26%), while quite small percentages use government-operated services for community access (11%) and employment (1%) (AIHW, 2003). FIGURE 11.1 NUMBER OF CONSUMERS OF CSDA-FUNDED SERVICES BY AGE GROUP AND SERVICE GROUP ON A SNAPSHOT DAY IN 2002 (data source: AIHW, 2003, table 3.4) 40

Number of consumers (thousand)

Employment Respite 30

Community access Community support Accommodation support

20

10

0 0–4

5–14

15–24

25–44

45–59

Age range (years)

60+

Not stated

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The number of Australian consumers who use government and non-government services by service group is shown in figure 11.2. The proportion of government and non-government services has changed in recent years. Throughout the world there is a trend away from government being the direct provider of disability services to government focusing mainly on funding and regulation, with actual service provision being carried out by non-government agencies. For example, Lakin, Prouty, Polister and Coucouvanis (2003) described the change in the US in residential service provision from 89 per cent government and 11 per cent non-government/private in 1967 to 51 per cent government in 1982, and 15 per cent government in 2001. FIGURE 11.2 NUMBER OF CONSUMERS OF CSDA-FUNDED SERVICES BY AGENCY SECTOR AND SERVICE GROUP ON A SNAPSHOT DAY IN 2002 (data source: AIHW, 2003, 3.2, 3.3)

Number of consumers (thousand)

25 Non-government Government 20

15

10

5

0 Accommodation Community support support

Community access

Respite

Employment

Service group

Accommodation support services This chapter focuses mainly on accommodation support services as a way of illustrating some of the important issues about specialist disability service provision. Other specialist disability services (employment, training, community access, respite, and leisure and recreation) are also important, but a detailed examination of these is beyond the scope of this chapter. Australian data about accommodation support services is used at times to illustrate national trends and issues for service provision.

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It must be emphasised that most people with a disability do not live in specialised disability accommodation support service settings. In 2002, there were 22 373 users of Australian accommodation support services (AIHW, 2003, table 1.1). Of these, 15 589 (70%) had a primary intellectual disability (table 3.6). The AIHW (2004) estimated that in 1998 212 700 Australians had an intellectual disability as their main disabling condition. The 15 589 using accommodation support services in 2002 represent only 7.3 per cent of this population. Even if we consider only adults, who are the main users of accommodation support services, there were an estimated 64 000 people in 1998 aged between 20 and 64 with an intellectual disability as their main disabling condition, vastly more than the total number of users of accommodation support services. This strongly suggests that the great majority of people with a primary intellectual disability live with their family or in their own home, although small numbers also live in private boarding houses, nursing homes, retirement villages or other aged-care facilities, emergency housing, prisons and so on. The percentage of Australian accommodation support users in 2002 by primary disability group is shown in figure 11.3. As this figure shows, people with an intellectual disability are by far the main users of accommodation support services. Table 11.1 shows the different types of accommodation support services recognised for data collection purposes in Australia. Using these categories, figure 11.4 reveals that different types of service are used, and that use varies by disability type. For example, among people with an intellectual disability group homes predominate, whereas in-home supports are used by many people with a primary psychiatric disability. Likewise, attendant care is used by a large percentage of people with physical disability or acquired brain injury, but this type of accommodation is quite rare for people with intellectual or psychiatric disabilities. The variations in current service provision are due to the different historical patterns of growth of services for these disability groups as much as (or more than) any inherent requirement for a particular type of service to meet the specific needs of people with a particular type of disability. For example, because segregated accommodation settings (institutions) were common for people with an intellectual disability throughout the 20th century their use is still relatively common today. This situation is discussed further in what follows.

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FIGURE 11.3 PERCENTAGE OF CONSUMERS OF CSDA-FUNDED ACCOMMODATION SUPPORT SERVICES BY PRIMARY DISABILITY GROUP ON A SNAPSHOT DAY IN 2002 (data source: AIHW, 2003, table 3.6) 7.2% 0.7%

Primary disability groups

0.9% 2.9%

Intellectual 4.1% Autism Physical 11.7%

Acquired brain injury Neurological

2.4%

Vision

70.0%

Psychiatric Other

FIGURE 11.4 CONSUMERS OF CSDA-FUNDED ACCOMMODATION SUPPORT SERVICES: PERCENTAGE OF EACH PRIMARY DISABILITY GROUP USING EACH ACCOMMODATION SUPPORT TYPE ON A SNAPSHOT DAY IN 2002 (data source: AIHW, 2003, table A1.6) 100 Other In-home

Percentage of consumers

80

Attendant care Group home Hostel

60

Small institution Large institution 40

20

0 Intellectual

Physical

Acquired brain injury

Primary disability group

Psychiatric

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Deinstitutionalisation Institutions are large residential centres that congregate people with a disability together and isolate them from the community. Institutions were originally intended to give people with disabilities a decent life, but this intention has not been realised. There have been numerous scandals around the world about the poor treatment, abuse and neglect of people in institutions (Conway, Bergin & Thornton, 1996; Furey, Niesen & Strauch, 1994). There is also very consistent scientific evidence that community services (such as living in an ordinary community home) lead to better quality of care and better lifestyle outcomes for people with a disability. Compared to those living in institutions, people with an intellectual disability living in community settings have: • better developed community living skills, self-care and domestic skills, and social skills • much more frequent and varied participation in the community • more frequent contact with family • greater choice • greater satisfaction with community services (Emerson & Hatton, 1996; Kim, Larson & Lakin 2001; Young, Sigafoos, Suttie, Ashman & Grevell, 1998). Because of community concerns about poor conditions in institutions and about the right of people with disabilities to live a decent life, and because of the well-established benefits of community services, institutions are becoming smaller, or closing. The process of deinstitutionalisation has occurred since the 1970s in most western countries as people with disabilities have moved from institutional to community housing and services. New entrants to the service system are overwhelmingly choosing not to accept institutional placement and are insisting on community-based services. Even so, institutions still exist in many countries, including Australia (see figure 11.4) and New Zealand (see O’Brien, Thesing, Tuck & Capie, 2001), although they are no longer the dominant form of service provision they once were. The case is well established for preferring community services to institutions for people with a disability. But all community accommodation support services are not the same, and it is important to appreciate how different types of community services suit different people.

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One size does not fit all Just as not everyone chooses to live in the same way in the broader community, so too no single accommodation support service type suits everyone with a disability. It is essential to understand that people have different needs and preferences about where and with whom they will live, as well as how and by whom they will be supported. What is more, people’s needs, lifestyle preferences and choice of living companions change over time (Van Dam & Cameron-McGill, 1995). A community living placement that is initially satisfactory may become less so as the person’s needs and preferences change, or as the setting itself changes. This situation is illustrated in Sue and Mary’s story in box 11.2. In practice, there are many more types of accommodation support services than those shown in table 11.1 because there is a continuum of community living arrangements in such matters as: • residence size – the number of people with disabilities living together (from large institutions housing hundreds of people to people living alone with support) • the mix of residents – whether all residents have a disability (institutions, hostels, group homes), or some do not have a disability (co-residency, support in the family home) • proximity to or clustering with other dwellings for people with disabilities (institutions, clustered or co-located community houses, dispersed community housing) • the amount of support provided (from 24-hour staffing to dropin or on-call support) • the mix of formal (paid) and unpaid support • whether the support is delivered in the person’s own home (or family home) or a setting controlled by the service (when housing and support are separate, service users can change their support provider without having to move out of their home, or move house without changing their support arrangements) • the nature and rigidity of government regulations for different residence types (see, for example, Conroy, 1996).

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BOX 11.2 • SUE AND MARY’S STORY Sue and Mary were good friends. When they first moved from the institution to a house in the community they shared with two other people, and the household received 24-hour staff support. That is, staff provided a total of 168 (7 x 24) hours of support each week to the people in the house. This arrangement continued for around two years, but it didn’t work very well. Sue and Mary wanted to continue to live together and, as they were friends, this seemed like a good idea. A suitable unit was located, and with intensive skills development the need for overnight support was eliminated. In this arrangement Sue and Mary between them received about 70 hours of support each week. After about a year of living together it became apparent that Sue wanted more privacy. Despite their friendship, they found it increasingly difficult to get on with one another. Changing their living arrangements yet again stretched the resources of the organisation that supported them, but a number of initiatives were taken to allow them to find more appropriate arrangements. It was felt that Sue would benefit from having a place that she felt was really hers, while Mary liked being around other people and having a garden. Mary’s family agreed that she would be more comfortable if there was someone else with her overnight. A small house was found for Mary, as well as a co-resident. (A co-resident is a person without a disability who shares the house or flat. The co-resident is usually not paid, but may receive a reduced rental or even free accommodation.) Having a co-resident helped provide Mary with companionship, good role modelling and security overnight. It also helped contribute towards rental costs. This arrangement meant that Mary required 34 hours of staff support a week. Sue lives alone in a small unit. She is quite happy to pay for a cleaner because she doesn’t like cleaning tasks. This has allowed for some reduction in staffing, and Sue is much happier because she doesn’t feel that staff are demanding that she clean up all the time. She now receives about 20 hours of staff support per week. These arrangements for Sue and Mary have been running for two years, and are working well for both of them. All the changes occurred within the existing service budget.

(reproduced and slightly adapted from Van Dam & Cameron-McGill, 1995)

People with a disability live in a wide variety of non-institutional community settings, with support from specialist disability accommodation support services, including: • group homes – fully staffed and located in ordinary community housing, group homes are the dominant model of community

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living for people with an intellectual disability (see figure 11.4). These homes are almost always dispersed throughout the community, but occasionally they are clustered or co-located in groups of dwellings • semi-independent living/supervised apartments – with drop-in staff support. Apartments are usually dispersed in different buildings, streets and suburbs, but in some cases there is a cluster of apartments in a single building • supported living – person-centred, individualised support in the person’s own home, with some degree of focus on ‘natural’ (unpaid) support • independent living – some monitoring but no regularly scheduled staff support, with episodic support available when needed • adult foster care – boarding with a family • co-residency – sharing with a person without a disability • hostels – larger, non-domestic style community housing • attendant care – personal care in the person’s own home. Each of these approaches to support provision has its positive and less positive features. Many people would regard the provision of flexible and individualised support in a person’s own home to be a highly desirable form of support. In box 11.3 Alana’s story continues as she talks about the in-home support she receives. Problems with group homes As figure 11.4 shows, in Australia group homes continue to be the most common form of community living for people with an intellectual disability. Research has shown that, compared to institutions, group home living typically results in improved skills (adaptive behaviour) and better lifestyle outcomes (Emerson & Hatton, 1996; Kim et al., 2001; Young et al., 1998). However, using institutions as the yardstick against which to evaluate service quality is not sufficient. The experience of living in a group home has not always met the expectation that this approach will provide a good life for residents.

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BOX 11.3 • ALANA’S STORY: IN-HOME SUPPORT SERVICES You met Alana when you read box 11.1. Because of her physical disability, Alana needs help with many daily activities at home including getting out of bed, showering, bowel care, dressing, meal preparation and some housework. She gets plenty of help from her partner, but he works full-time. She currently receives two hours help from a support worker daily. About eight weeks ago Alana changed service providers because she was unhappy with the old service. So far things are working out well with the new provider. GOOD AND BAD POINTS

Of course it’s good to get help and I depend on it. What’s not so good is having to wait for staff to turn up. If they are late I can’t get up, which makes it hard to have a life and be even a little bit spontaneous. My new service provider is good and so far they have never failed to turn up. My old service sometimes didn’t show up in the mornings (about once every two or three months) and more often at lunch times. When no-one arrived I’d ring to check and they’d tell me that they had to cancel for some reason or other. Would a phone call be too much to ask? GETTING SUPPORT FOR ACTIVITIES THAT YOU WANT TO DO

There are certain activities that I have just not been able to get help with. I wanted to go swimming each week for exercise and to help me lose weight, but I am still fighting to try to get help with that. There are other activities, like shopping and housework, where I don’t get enough support. Two hours a fortnight would be enough for me to go to the supermarket and buy stuff in person. I need help with the trolley and with getting stuff off the shelves. Right now I have to shop online and have it delivered, but I’d much rather go to the supermarket myself. I’m going to apply for an attendant care package which, I hope, will solve these sorts of problems. FLEXIBILITY AND ‘BANKING’ HOURS

With my old service provider there was no way that you could save up (bank) support hours to use for a special activity or while my partner is away. He helps me heaps when he’s at home (eg, getting into bed at night), but whenever he had to travel interstate for work we would just have to pay for extra support ourselves. The new service is much better – you can bank hours, and I can also get reimbursed if I have to pay for one-off extra support.

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A number of problems with group home living have been identified. These include, among others: • Incompatibility Who to live with (and how or by whom this issue is decided) is a fundamental question for all community living arrangements – see box 11.4 for an example (Van Dam & Cameron-McGill, 1995; Whaite, Stancliffe & Keane, 1999). • Over-supervision Some current group home residents do not need constant staff supervision. There is a danger of unnecessary dependence on staff. In addition, some residents find constant staff presence intrusive and restrictive of their freedom to do what they want when they want (Stancliffe & Keane, 2000; Van Dam & Cameron-McGill, 1995, Whaite et al., 1999). • Limited individuality Because the needs of the group often come first, individual choice is constrained and the opportunity to pursue separate activities is limited (Stancliffe 1991, 1997; Stancliffe & Keane 2000; Van Dam & Cameron-McGill 1995). • Rigid routines Activities generally need to be scheduled fairly rigidly around staff availability and the needs of the group (Van Dam & Cameron-McGill, 1995). Advocates of supported living have also identified a number of shortcomings of traditional community living services, including group homes (Howe, Horner & Newton, 1998; Racino & Taylor, 1993). Although problems have been identified with group homes for some residents, this does not mean that they should be abandoned. Many people enjoy and benefit from living in a group home. The problems identified become especially serious when there is little or no alternative to group home living. Group homes certainly have a place among the range of approaches to community living, but other options should also be available.

Comparisons of different types of community living Relatively recently, with the development of a more diverse range of community living options, it has been possible for researchers to examine service provision and lifestyle outcomes in different types of community living. These comparisons have generally found better client outcomes in smaller, more individualised, flexible living

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• DORIS’ STORY

Doris is 49 years old and had lived at the institution for about ten years. When she was asked where she wanted to go after leaving the institution Doris said she would like a little place of her own, such as a flat, near her family. It was possible to arrange for her to live near her family, but in order to accommodate the four bed group home model, it was also decided that she should live with three other people. When she was asked to sign the paper agreeing to this, she indicated that she would sign as long as a particular person wasn’t included. This person did go to the same house, however, due to the limited options. The group home was a house with a flat at the back for Doris. She said she liked this very much. It was close to her family and she is very familyoriented. However, major problems with the household mix were evident from the beginning and led to a range of behaviour problems. The situation at this house was described by staff as a continual crisis. Doris’ behaviour included yelling, screaming, throwing and physical violence. Behaviour support strategies were developed and were reported to be helpful for crisis management. Information and training regarding protective behaviours for staff was also helpful. However, the strategies were not successful for long-term management, and did not really address the underlying compatibility issues. The situation in the house created a problem with neighbours. After 13 months a neighbour took out an apprehended violence order (AVO) against Doris after being hit in the face. This resulted in Doris moving to the respite house while alternative arrangements could be made. A case conference was held to plan for the future. Doris indicated that she wished to return to the same area and live on her own. Her wishes were acted on, and another house was rented. Doris moved into this house and is supported by one staff member, from 4 pm to around 7 am on the days she goes to work and for 24 hours on other days. Staff say that Doris is ‘like a different person’. Doris says it is better than before. However, although her challenging behaviours have decreased, she can still express her anxiety through physically and verbally abusive behaviour and is still considered to require ongoing behaviour support. Although it is unusual for one person to be supported in this manner, this is the type of option that needed to be considered for Doris to live successfully in the community at this stage.

(reproduced and slightly adapted from Whaite et al., 1999)

arrangements that are dispersed (that is, not clustered) throughout the community. Some of the available research has contrasted: • group homes and semi-independent living (supervised apartments) (Burcharda, Hasazi, Gordon & Yoe, 1991; Stancliffe & Keane, 2000)

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• group homes (or hostels) and supported living (Emerson et al., 2001; Howe et al., 1998) • hostels and ordinary housing (group homes) (Emerson & Hatton, 1996) • community living, village communities and residential campuses (Emerson et al., 2000) • community residences of differing size (Conroy, 1996; Stancliffe, 1997; Tossebro, 1995) • clustered housing (three or more co-located houses) and dispersed community housing (Emerson, 2004). The findings of such research provide a basis for making decisions about the relative merits of different types of community living services, and are quite useful at a policy level. However, it is important to avoid simplistic interpretations claiming that one service type is ‘best’. For example, semi-independent living may have been found to be associated with better outcomes in a number of studies, but this is of little relevance to a person who requires 24-hour support. Helping a person choose where to live is a balancing act that involves attending to their needs, preferences, vulnerabilities, lifestyle outcomes, social network and many other highly individual factors.

Issues in service provision Some generic public services, such as regular education in schools, are routinely available to all as an entitlement: the student simply enrols at a local school. Specialist disability services typically are not an entitlement in this sense. Limits on government expenditure, rationing of services and waiting lists are features of most disability service systems. Governments tightly manage the supply of resources, targeting services toward eligible people with the most urgent needs. As a result, there is generally a high level of unmet need for services. Too few people have access to needed services. Relative to the need, there is a substantial shortage of specialist disability services. The AIHW (2002) conservatively estimated that the unmet need in 2001 for accommodation support and respite services represented 12 500 people. Meeting this need would require a 49 per cent increase over the level of services existing in 2002.

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Growth in service provision is too slow to meet existing and projected need. The pace of growth of service provision has been too slow to enable the unmet need to be dealt with in a reasonable time. For example, growth in Australian accommodation support services from 1997 to 2002 only just kept up with national population growth, so there was no real growth in service provision (Stancliffe, Lakin & Prouty, in press). There are also issues related to power and control. As noted in chapter 6, research has repeatedly shown that people with an intellectual disability have very little control over major service-related decisions such as: • where to live • who to live with • the hiring and firing of support staff • where and with whom to work or attend day programs. A final important issue concerns consumer-directed services. Consumer-directed services Most disability services are agency-directed. The agency receives government funding, hires staff, and makes decisions about who to serve and in what way (with some degree of government control). In many western countries, there has recently been a strong move toward individualised, consumer-directed services. Such services have emphasised key structural features of funding and service provision such as: • individual budgets; that is, a specified amount of funding is assigned to the person with a disability to purchase services. That person and their family have substantial control over the budget, and can change service providers if they wish, or employ their own staff directly • consumer control over services and decision-making • person-centred planning • independent support brokerage. In the US state of Michigan, Head and Conroy (2005) found that, after three years of consumer-directed services, there were large

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improvements in outcomes, such as quality of life and overall consumer choice and control. Importantly, the largest increases in consumer choice and control involved the service-related decisions that, in traditional services, people with a disability usually have little control over, including choices about staff, where and with whom to live, and which agency to receive services from. This study adds to the growing evidence that so-called ‘consumer-directed services’ actually do result in greater consumer choice and control, as well as better outcomes in other life domains. The advent of consumer-directed services represents the further development of a disability service system that has undergone substantial change in recent decades as it has evolved from institutional to community services, and beyond.

Conclusion Although people with a disability use specialist disability services, they are also significant users of generic community services. Specialist services cover the broad areas of accommodation, employment, respite, community access and advocacy. In Australia, the growth in these services is not meeting identified need. Particular attention was given in this chapter to accommodation support services and ways in which they have changed in response to deinstitutionalisation and other recent social trends. There is a wide range of accommodation supports for people with a disability, and it is important to consider all these options when responding to their needs.

Learning activities 1

To develop an understanding of individual use of generic and specialist services, talk to two adults with a disability and identify the services – both generic and specialist – that each uses. If the person needs help to give you this information, you can also talk to their family and/or carers. Service types you should consider are: • employment • education • transport and mobility • banking and financial management

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• housing and in-home living support • social groups • leisure and recreation • shopping • health (medical/dental). For each of the service types listed, ask each person about: (a) services they use, including both generic services and specialist disability services; or, if they do not use a service in that area, why not (b) any help they need to use each service (for example, some people with an intellectual disability like to have a support person with them when going to the doctor, to make sure they can give the doctor all the necessary information, and that they fully understand the treatment prescribed) (c) if help is needed to use the service, whether this help is available (d) services they need but currently do not receive (or do not receive enough of). It is a good idea to talk to two people with differing abilities, disabilities and support needs, because this will allow you to clearly see their different patterns of service use. 2

Identify and discuss the advantages and disadvantages associated with each of the non-institutional specialist disability accommodation support services described in this chapter. The main service types are: • group homes • semi-independent living/supervised apartments • supported living • independent living • adult foster care • co-residency • hostels • attendant care.

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To develop an understanding of specialist disability service agencies, find government and non-government specialist disability service agencies in your area. Describe an example of each of the following service/agency types: • accommodation support • supported employment (the person with a disability works for pay) • community access/adult day activities (where the person with a disability is not paid to attend). Describe each service under the following headings: • service type • agency name • main activities • number of settings • auspice (government or non-government) • staff (number, typical qualifications and training) • service users (number, types of disabilities) Describe the whole agency. For example, for an agency that operates a number of different accommodation support settings (such as a hostel and multiple group homes), provide overall information about the agency, not just about one setting.

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Aspects of the continuum of community living arrangements are listed below. Explain the relevance of each of these aspects to Sue and Mary’s story in box 11.2: • size of residence • mix of residents • proximity to other accommodation for people with a disability • amount of support provided • mix of formal and informal support • where support is delivered • type of regulations in the residence.

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Find an example in your area of: • an accommodation support service with full-time staffing (staff are always present when residents are home, including overnight) • an accommodation support service with part-time staffing (there are times when residents are home but no staff are present, and there is probably no overnight staffing). For each type of service, briefly describe: • staffing levels (number of staff and total staff hours per week) • activities done for residents by staff (little or no resident participation) • number of residents • hours per week with no paid staff support • activities done independently by residents (no staff help) • activities done by residents with staff help. Activities considered should include: cooking, washing up, clothes washing, ironing, cleaning and tidying own bedroom, house cleaning, lawn mowing, gardening, bill paying, banking, budgeting, supermarket shopping, clothes shopping, transporting (by car or public transport), collecting medication, household maintenance and repairs. What differences are there between the two accommodation support service types?

References AIHW see Australian Institute of Health and Welfare. Australian Institute of Health and Welfare (2002). Unmet need for disability services: Effectiveness of funding and remaining shortfalls. Canberra: AIHW. Australian Institute of Health and Welfare (2003). Disability support services 2002: National data on services provided under the Commonwealth/State Disability Agreement. AIHW cat. no. DIS31. Canberra: AIHW. Australian Institute of Health and Welfare (2004). Estimates of prevalence of intellectual disability in Australia. Journal of Intellectual & Developmental Disability, 29, 3, 284–9. Burchard, S. N., Hasazi, J. E., Gordon, L. R. & Yoe, J. (1991). An examination of lifestyle and adjustment in three community residential alternatives. Research in Developmental Disabilities, 12, 127–42.

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Conroy, J. W. (1996). The small ICF/MR program: Dimensions of quality and cost. Mental Retardation, 34, 13–26. Conway, R. N. F., Bergin, L. & Thornton, K. (1996). Abuse and adults with intellectual disability living in residential services. Report to the Office of Disability. Canberra: National Council on Intellectual Disability. Department of Family and Community Services (2004). Commonwealth State/Territory Disability Agreement. Retrieved December 8, 2004 from . Department of Health and Ageing (2004). Home and Community Care Program overview. Retrieved December 8, 2004 from . Emerson, E. (2004). Cluster housing for adults with intellectual disabilities. Journal of Intellectual & Developmental Disability, 29, 3, 187–97. Emerson, E. & Hatton, C. (1996). Deinstitutionalization in the UK and Ireland: Outcomes for service users. Journal of Intellectual & Developmental Disability, 21, 17–37. Emerson, E., Robertson, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A. et al. (2000). Quality and costs of community-based residential supports, village communities, and residential campuses in the United Kingdom. American Journal on Mental Retardation, 105, 81–102. Emerson, E., Robertson, J., Gregory, N., Hatton, C., Kessissoglou, S., Hallam, A. et al. (2001). Quality and costs: Supported living residences and group homes in the United Kingdom. American Journal on Mental Retardation, 106, 401–15. FACS see Department of Family and Community Services Furey, E. M., Niesen, J. J. & Strauch, J. D. (1994). Abuse and neglect of adults with mental retardation in different residential settings. Behavioral Interventions, 9, 4, 199–211. Head, M. J. & Conroy, J. W. (2005). Outcomes of self-determination in Michigan: Quality and costs. In R. J. Stancliffe & K. C. Lakin (Eds), Costs and outcomes of community services for people with intellectual disabilities (pp. 219–40). Baltimore: Paul H. Brookes. Howe, J., Horner, R. H. & Newton, J. S. (1998). Comparison of supported living and traditional residential services in the state of Oregon. Mental Retardation, 36, 1–11. Kim, S., Larson, S. A. & Lakin, K. C. (2001). Behavioural outcomes of deinstitutionalisation for people with intellectual disability: A review of US studies conducted between 1980 and 1999. Journal of Intellectual & Developmental Disability, 26, 35–50. Lakin, K. C., Prouty, R., Polister, B. & Coucouvanis, K. (2003). Change in residential placements for persons with intellectual disabilities in the USA in the last two decades. Journal of Intellectual & Developmental Disability, 28, 2, 205–10. O’Brien, P., Thesing, A., Tuck, B. & Capie, A. (2001). Perceptions of change, advantage and quality of life for people with intellectual disability who left a long stay institution to live in the community. Journal of Intellectual & Developmental Disability, 26, 1, 67–82. Racino, J. A. & Taylor, S. J. (1993). ‘People first’: Approaches to housing and support. In J. A. Racino, P. Walker, S. O’Connor & S. J. Taylor (Eds). Housing, support and community: Choices and strategies for adults with disabilities (pp. 33–56). Baltimore: Paul H. Brookes. Stancliffe, R. J. (1991). Choice making by adults in supported community accommodation: Hobson’s choice? Interaction, 5, 4, 23–33. Stancliffe, R. J. (1997). Community living-unit size, staff presence and resident’s choicemaking. Mental Retardation, 35, 1–9. Stancliffe, R. J. & Keane, S. (2000). Outcomes and costs of community living: A matched comparison of group homes and semi-independent living. Journal of Intellectual & Developmental Disability, 25, 281–305. Stancliffe, R. J., Lakin, K. C. & Prouty, R. W. (in press). Growth in residential services

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in Australian and the USA: 1997–2002. Journal of Intellectual & Developmental Disability. Tossebro, J. (1995). Impact of size revisited: Relation of number of residents to selfdetermination and deprivatization. American Journal on Mental Retardation, 100, 59–67. Van Dam, T. & Cameron-McGill, F. (1995). Beyond group homes. Interaction, 8, 3, 7–13. Whaite, E. A., Stancliffe, R. J. & Keane, S. (1999). Compatibility: Living together is hard to do. Interaction, 13, 1, 24–30. Young, L., Sigafoos, J., Suttie, J., Ashman, A. & Grevell, P. (1998). Deinstitutionalisation of persons with intellectual disabilities: A review of Australian studies. Journal of Intellectual & Developmental Disability, 23, 155–70.

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Understanding the management context AJ (Tony) Shaddock

Appreciation is expressed to Sandy Bauerle, Ken Baker, Lena Hoffman-Raap, Gary Smith, Tony Spinks and Robin Way for their assistance in the preparation of this chapter.

Learning objectives After reading this chapter and completing the activities you should be able to: • understand the broad factors that affect how organisations support people with disabilities • appreciate the effects of these factors on your own organisation in supporting people with disabilities • understand the quality assurance and accountability agenda in disability services • understand the skills you need to work with management and colleagues for the benefit of people with disabilities • explain how occupational health and safety responsibilities intersect with current values and standards in disability services.

Introduction Most employees in disability services work in organisations such as government departments, non-government not-for-profit organisations and employment agencies. Whether they work with individual

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clients or with groups, disability workers will be more effective and satisfied if they have the knowledge and skills to understand their particular employment context and appreciate the forces that shape it. It is helpful if employees understand: • how their organisation works • the constraints under which it operates • the factors that affect its success. Like all employees, disability workers also need to understand: • what makes their managers ‘tick’ • how current social, political, economic and legal factors affect their workplace • how to ‘manage up’ so that they help people with disabilities experience quality services.

Understanding your organisation If you think back to what you were like, and what the world was like, several years ago, it will be evident that some features remain more or less the same, some appear the same but are actually quite different, and some change dramatically. It is the same with organisations. They may appear to be much the same as they were a decade ago, yet some aspects undergo continual change. Values, goals, staff roles and ways of doing things in organisations are always responding to changing circumstances and new developments. Worldwide trends in administration and management, political factors, legislative changes, policy initiatives, developments in service values, funding decisions, structural reorganisations, and changes in the profile and needs of clients, among other things, mean that the way services are provided today may be quite different from previous models and practices. One of the themes of this chapter is that workers in the disability industry can be more effective – and more satisfied – in their work if they have the skills to analyse, understand and appreciate its context. As Hummel (1994, p. 61) suggests, workers need to align their expectations with the realities of their work situation, and to be aware of tensions between their aspirations and their organisation’s goals.

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Policies and legislative influences Many factors in the external environment influence how an organisation operates. Earlier chapters discussed definitions of and responses to disability in modern society, and explained current legislation, policies and funding. These broad factors affect: • how organisations function • the effectiveness and satisfaction of workers • the type and quality of services. For example, policies that have promoted employment and paid work for people with disabilities have encouraged many organisations to move away from traditional custodial and caring roles, to pay higher wages and/or to become more active in getting people into real jobs. Although an organisation can have some impact on the factors that operate ‘out there’ in the external environment, all organisations are affected by external influences that are to some extent beyond their direct control. Jones and May (1999) demonstrate how societal, legal, technological, economic and political factors support and/or challenge human service organisations. Societal factors

Societal factors include: • social demography (for example, racial diversity in the community) • the makeup of the workforce (for example, the number of people in full-time jobs) • prevailing social attitudes, values and priorities. For example, if the general view in society is that disability is more a ‘private trouble’ than an issue for society in general, this perception will influence the level of public funds that governments are prepared to allocate for disability services. Legal factors

Both the general legal framework and context, and specific disabilityrelated legislation, have a major impact on what gets done and how it gets done in disability organisations. Specific disability legislation is discussed in chapter 9; but workers in disability organisations

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must also work within the general legal framework as it relates to such issues as: • privacy • freedom of information • industrial and occupational health and safety legislation. Directors and staff have a legal responsibility to abide by these laws, regardless of their personal opinions (R. Way, personal communication, August 16, 2004). Technological factors

Technological advances have had a major impact in particular aspects of disability. For example, improved medications, treatments and aids have enhanced the lives of many people. It is also true that day-to-day work in the disability sector remains very labour intensive rather than ‘high tech’. However, the technological environment directly and indirectly affects how organisations spend their time and resources. For example, extensive reporting requirements demand the allocation of considerable resources to record-keeping, with consequent requirements for staff training and the acquisition of equipment, as well as demands on staff time. Economic and political factors

A major determinant of the work environment in any sector is the general economic climate. The state of the economy, the levels of unemployment and inflation, and the adequacy of the tax base will always affect public and private support for disability services. In addition, worldwide trends towards deregulation, competition and the increasing influence of treasury departments over all government policy and expenditure (including the determination of priorities in resource allocation across portfolios) have changed traditional funding responsibilities and priorities. Some features of the economic and political environment reflect influences that are beyond any particular government’s direct control; for example, the movement towards free trade, the impact of terrorism and the power and influence of multinational companies. These phenomena influence the national agenda and so affect the priority given to the needs of people with a disability and the services that support them. While the personal issues associated with disability do not appear

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to be a high priority in Australian government policy, the health and wellbeing of Australian citizens is a stated national priority, particularly in relation to ageing. Furthermore, disability services are frequently in the news because of the current level of unmet need. The issues posed by disability are certainly on the national agenda, with ‘every jurisdiction in Australia contemplating or embarking on a major disability services reform program’ (K. Baker, personal communication, 17 August, 2004). How does the organisation really work? Workers in the disability sector also need to understand how their particular organisation actually works. The organisation’s publicity material and the Vision and Mission on the front office wall are not the most reliable sources of information about what the organisation does and how it does it. If the road to hell is paved with good intentions, the advertising billboards along the way will be mainly Vision and Mission statements from human service organisations. Early in my career I accepted an invitation to get involved in several sheltered workshops (as they were then called). However, I soon learned that although these services claimed to be preparing people with disabilities for jobs in the community, fewer than two per cent of workers each year actually got real jobs. I realised that these services mainly provided ‘occupational activity’ for people and somewhere to go each day, and thus they served a useful purpose for parents, guardians and the community. However, there was very little training, job search or job acquisition. In some cases the attempts of a person (particularly if they were labelled ‘high functioning’) to change jobs or to leave the workshop were discouraged because the businesses would lose ‘their best workers’. Workers in the disability sector will be more effective and satisfied if they understand their organisation at a deep level. Jones and May (1999) provide a useful checklist for organisational analysis, and examples of their questions are provided in box 12.1. Your answers to questions of this type will tell you a lot about your organisation. However, if you want to learn quickly about your organisation, work out where the money goes – the priorities for expenditure – and who gets to spend it. What and who gets resourced? What gets money spent on it? What gets checked and counted by management? What are the activities that consume most of most staff members’ time?

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BOX 12.1 • UNDERSTANDING YOUR ORGANISATION •

What is the nature and basis of authority in the organisation?

•

What informal processes and relations are important?

•

What is the nature of decision-making processes?

•

How might workers utilise power, influence and authority in organisations?

•

What are the structural constraints on the organisation?

For the complete checklist, see Jones and May (1999, p. 75)

Your answers to these and similar questions will reveal the dominant values, aims and objectives of your organisation. If you check your answers against the Vision and Mission statements, you may be pleasantly or unpleasantly surprised, but you will certainly have a more accurate understanding of your work environment.

The current managerial context Since 1991, services for people with disabilities in Australia have been shaped by Commonwealth/State/Territory Disability Agreements (CSTDA) that specify responsibilities and sources of funding for accommodation, community, employment, and other services needed by people with disabilities. These agreements have been built on a clear philosophy that emerged in the 1960s and 1970s, a philosophy that emphasised human rights and communitybased service models (AIHW, 2002). Currently, the position of all Australian governments is being expressed through policies of: • community inclusion • demand management • individualised approaches • early intervention and prevention • attention to improved assessment and the management of transitions in people’s lives (Steering Committee for the Review of Commonwealth/State Service Provision, 2002).

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The level of unmet need in disability services and the funding shortfalls in Australia are well known and acknowledged. Although expenditure on services provided by the Commonwealth has risen in real terms (McIntosh & Phillips, 2002), the demand for services continues to exceed the budgetary allocations of both Commonwealth and state governments. At the broad political and economic level, organisations are experiencing the intended and unintended ‘operational effects of competition and commercialisation’ (Laugher, 2002, p. 30). These policies usually include an acceptance of economic rationalism as a general philosophy (see chapter 3), and they frequently include managerialism as the preferred method of service administration. Managerialism and economic rationalism Managerialism is the name given to the current, dominant management paradigm that more or less determines how day-to-day activities are conducted. O’Brien (1997) describes managerialism as a set of assumptions that focus on so-called generic and transferable management skills; that is, it is claimed that management can be ‘contentfree’ and that managers of disability services do not need to have a ‘disability background’ or experience and knowledge of disability. O’Brien suggests that an organisation’s adoption of a ‘management paradigm of disability’ is demonstrated when: • managerial staff are selected for their capacity to manage employees and finances •

planning is conducted mainly by management rather than in collaboration with service users and families

• priority is given to pursuing funding contracts. The managerialist approach brings with it a new lexicon. Managerialist jargon includes ‘strategic planning’, ‘operational planning’, ‘performance indicators’, ‘outputs’, ‘inputs’, ‘customer surveys’, ‘contracts’, ‘audits’ and ‘total quality management’ (O’Brien, 1997, p. 70). Although the managerialist approach can be beneficial, it is unlikely to provide long-term benefits for service users and their families if the policies developed by generic managers are based on fairly superficial assumptions about the nature of disability and what constitutes an appropriate response in a civil society.

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Economic rationalism provides the general rationale for the business-oriented model that permeates all sectors and industries. It tends to focus on indicators of productivity that give priority to economic benefits as the major goal and benefit of work. For example, the Industry Commission Report (1997) states that ‘productivity growth is the key ingredient in promoting sustainable economic growth and improving the material living standards of Australians’ (p. iii). This assumption, and the values that support it, are presented as self-evident facts in this influential government report. Not unexpectedly, the report gives scant attention to industries that are not directly related to income generation arising from improvements in productivity as a result of the application of new knowledge and technology. The economic rationalist position is that: Producing output (more precisely, adding value) generates income. As goods and services are produced and sold, wages are paid, profits are made and can be distributed and taxes accrue. Higher productivity means more output; more output means more income; and more income means higher living standards. (Industry Commission, 1997, p.8)

Economic rationalism often includes practices that involve contractualism, including competition, outsourcing and purchaser-provider arrangements. With disability services currently conceived as businesses in a competitive environment, and with organisations held accountable by government for compliance with service standards, organisations and their employees must be aware of their legal responsibilities. In an economic rationalist environment, ‘business’ issues are paramount, and a feature of this environment is ‘if you don’t deliver, you may be sued.’ Economic rationalism has also given prominence to the need for risk management, particularly in relation to the possibility of litigation for breach of contract, for example, when organisations fail to deliver the type and quality of services they offer. Risk management (also referred to as risk reduction or risk minimisation) is a procedure to reduce potential legal liability. It is a proactive system which attempts to address potential problem areas before they actually lead to reactively defending legal proceedings (NSW Sport and Recreation, 2004, p.1).

Although economic rationalism is currently the dominant paradigm, the reality is that the assumptions, values and principles on which

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services are based are undergoing continuous change as people and groups pursue their different agendas. In the last fifty years, services have been shaped by approaches that see service provision as a community-based charity, as a medically-oriented service, and/or as a professionally dominated approach based on principles of normalisation (Nirje, 1969) and social role valorisation (Wolfensberger, 1983). Without in any way suggesting that previous eras of disability administration were perfect, or that the current business-oriented model has not had some successes, it is clear that the business approach poses many tensions for service users and their families, and for managers and employees in disability services. These days the disability industry is required to operate in a business model in which ‘governments and their bureaucracies focus on compliance, efficiencies and effectiveness’ (Way, 2002, p. 20). Unfortunately, whatever the benefits claimed for managerialism in other sectors, in the disability sector it may also foster practices that are inconsistent with the government’s professed individualised, demanddriven, inclusion-oriented philosophy. It’s hard to imagine how services can be genuinely demand-driven and responsive to the individual needs of service users when service users, their families and their advocates are not an integral part of the planning process. Similarly, approaches to service development that involve assessing people on standardised tests and streaming them into a small range of funding bands or service options can hardly be considered ‘individualised’. The pursuit of standardised quantitative outcomes in a business model can clash with service users’ perceptions and experience of a quality service (see box 12.2 for an example). Current economic rationalist and managerial paradigms complicate the environment in which disability services operate. First, the primary aims of these services are not always directly linked to economic outcomes, to business efficiency and to the uptake of technology. The ‘disability industry’ is a labour intensive one in which new knowledge and new technology play important, but not dominant, roles. Second, when value is added (for example, when workers assist service users to become involved socially in their community and to improve their life chances) the benefits may not translate readily into economic gains, and/or the economic gains may be secondary, trivial or non-existent.

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BOX 12.2 • A BUSINESS MODEL VERSUS A PERSON-CENTRED MODEL Lowen (2002) describes how many staff in her service put a lot of time and effort into assisting James, a young man with disabilities, to become relaxed and happy in a secure environment. James had previously exhibited severe challenging behaviour but with a personalised, flexible approach, his behaviour improved and he began to enjoy life – friends, parties and involvement in his community. Lowen explained how:

These conditions did not last. Changes in management saw changes in the approach to service provision, with economic concerns given priority. There was a push to ‘streamline’ the service, making across-the-board changes involving all clients and staff. The individualised, person-centred approach was abandoned in favour of a ‘one-size-fits-all’ policy where staff and clients were expected to follow similar rosters and routines, no matter where they found themselves. Quantitative outcomes became the focus; and on that basis there were dramatic disruptions to almost every aspect of James’ life. (Lowen, 2002, p. 9) Lowen described the subsequent tragic unfolding of events, including the employment of less expensive agency staff; the failure to continue the personalised focus on James’s quality of life; the almost predictable deterioration in James’ behaviour; the administration of antipsychotic drugs to curb this behaviour; his fits of depression; and, ultimately, his death at the age of twenty-seven. Lowen says that James died from a seizure that was induced when he drank too much water, a behaviour he engaged in when depressed. Highlighting the tensions involved in the current business model, Lowen gently cautioned that

a careful balance must be struck between providing a flexible, person-centred approach to service provision and remaining competitive in an environment where quantitative outcomes dictate organizations’ viability (p. 9).

Third, some of the standard procedures of economic rationalism and managerialism (such as management taking total responsibility for planning) are inconsistent with ‘service values’ such as empowerment, consumer involvement, self-determination and demand management. Fourth, managers of contemporary disability services are required to plan, manage and report in ways that may be well suited to production-based industries and businesses but that appear irrelevant, or less useful, in the human services. My colleague Tony Spinks, who manages a business service for people with disabilities

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at the University of Canberra, describes the clash between the business model and the person-centred model in this way: Government provides funding to business services for the provision of direct support to employees with disability. A common requirement is for business services to undergo ‘desk-top’ and other financial audits where an accountant determines what costs are associated with general business and what portion of funds can be legitimately ‘spent’ on providing direct support to employees with disability. Business services are constantly reminded that they are responsible for taxpayers’ money and managers of these services are accountable, even though they are NOT usually professional accountants. Similarly accountants may at best have only a cursory understanding of disability issues and disability service standards, and as a consequence, impose decisions that are at variance with human service delivery.

BOX 12.3 • ‘IT’S A BUSINESS COST – TRUST ME! I’M AN ACCOUNTANT’ ‘It’s a business cost,’ matter-of-factly asserted the accountant. ‘What do you mean it’s a business cost?’ lamented the manager. ‘A business has to pay transport costs whether your employees have a disability or not.’ ‘Yes, but …’ ‘Delivering product to your business client is a business cost.’ ‘Hang on.’ ‘It has nothing to do with directly supporting employees with a disability.’ ‘But …’ ‘It’s a business cost.’ ‘When we deliver our product to the business client a support worker drives the company van and almost always takes one or two employees to help load and unload.’ ‘It’s a business cost.’ ‘At times some employees need help and direction with loading and unloading.’ ‘It’s a business cost.’ ‘And what about standard three?’ ‘It’s a business cost.’ ‘It’s a logical opportunity for participating in the wider community.’ ‘It’s a business cost.’ ‘Our employees get to talk with their employees. That’s important.’ ‘It’s a business cost.’ ‘Our employees get to see where the product they make goes.’ ‘You could write a report but it’s a business cost, pure and simple. Trust me. I’m from the government. I’m here to help you. I’m an accountant.’

(written by Tony Spinks)

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The financial audit process involves many focused hours on ‘getting it right’. Further, the reporting undertaken by managers of business services to the project and other officers from the government funding agency justifying what costs are general business or direct support, is complex, ongoing and time consuming. Many managers are left pondering if these hours should be considered as a cost associated with running the business or whether this time could be counted towards providing support to employees with disability. (Tony Spinks, personal communication, 11 October, 2004)

The clash between the business and person-centred models is further illustrated in box 12.3 opposite. Many managers of contemporary disability services struggle to reconcile economic rationalist management priorities and concerns with human service principles. If the managers are struggling, it is little wonder that employees in the disability industry may also be puzzled by the different messages they receive from the government, from the bureaucracy and funding agencies, from the managers and boards of directors of their service, and from clients and their families. Although there are still many supporters of economic rationalism (Edwards, 2002), there are signs that we are moving on. Experience has shown that a single-minded focus on the market and on economic benefits does not make everyone a winner, and this realisation has had an impact at the ballot box. So-called ‘third way’ approaches to welfare involve governments attempting to integrate an emphasis on the economy with attention to the social needs of citizens (Saunders, 2002). This response partly reflects an upsurge in civic responsibility as citizens ‘are mobilizing against the perceived results of government regulation and, in some cases, the imposition of values contrary to their own’ (Weber, 2003, p. 5). As a result, many governments are now more willing to focus on the ‘triple bottom line’, adding environmental and social issues to the once dominant economic sustainability agenda. The new policy agenda offers many new opportunities for people with disabilities and those who work with them, particularly the opportunity, and need, to form partnerships with the community and with mainstream organisations. (The implications of the era of the triple bottom line for the disability sector are more thoroughly outlined in Shaddock, 2003).

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Quality assurance and accountability One major benefit of the current productivity-oriented approach to management has been the increased attention given to performance measurement, quality management, accountability and similar concepts. Performance measurement Performance measurement can: • provide a picture of performance over time • provide evidence for whether or not objectives are being met • help clarify objectives and responsibilities • inform the community and stakeholders about actual performance • encourage ongoing improvement • promote analyses of the relationships between agencies and programs (Steering Committee for the Review of Commonwealth/ State Service Provision, 2003). Performance measurement usually focuses on outcomes rather than processes. It involves the development and use of a set of performance indicators that are collected periodically and that allow comparisons of performance over time, and comparisons with similar organisations (sometimes referred to as ‘benchmarking partners’) (Steering Committee for the Review of Commonwealth/State Service Provision, 2003, 1.9 & 1.10). The ‘performance indicators’ approach is based on the assumption ‘that quality can be gauged from a limited number of collectable, measurable indices of performance’ (Dickens, 1994, p. 90). For example, possible performance indicators of ‘participation outcomes’ in employment services by people with disabilities might be: • the number and proportion of people involved in the labour force • the number and proportion of people who are involved in particular types of employment • clients’ perceptions of the quality of their experience of work. Of course, performance assessment can also be a complete waste of time and resources, an exercise in ‘garbage in – garbage out’, and/or the oversimplification of what is really a complex situation:

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The danger lies … in the temptation for bureaucrats to opt for easy-toquantify (but trivial) measures, rather than more meaningful qualitative measures, and that the former will then drive service development (Baker, 2003, p. 3).

The recent work of ACROD Limited in developing benchmarks that address the impact on the person in receipt of services illustrates a more sensitive approach to performance assessment in the disability sector – see box 12.4 (R. Way, personal communication, August 16, 2004).

BOX 12.4 • THE ACROD PERSON-CENTRED BENCHMARKING APPROACH At this time, the benchmarks are still under development but these draft benchmarks illustrate how performance assessment can target the service users’ needs. EXAMPLE ONE (PERSONAL RELATIONSHIPS IN ACCOMMODATION SUPPORT)

•

Personal relationships remain personal and as private as the person wishes.

•

The service facilitates personal relationships and provides assistance on request or as appropriate.

EXAMPLE TWO (DECISION-MAKING AND CHOICE)

•

Documentation (in appropriate formats) is provided by the service to the person so that they are in control of the processes and have a record of the means, the processes and the outcomes for future reference.

•

A person with a disability is encouraged, supported and facilitated to make decisions about all aspects of their lives.

So the success and acceptability of this approach to measuring outcomes and ascertaining quality depends very much on: • the relevance and importance of the performance indicators (particularly as judged by service users and their families) • the comprehensiveness and scope of the set of performance indicators • the ability and resources of program managers to gather and analyse an adequate amount of useful data • the value given to particular indicators in any overall judgement of quality.

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Performance assessment has spawned a range of monitoring, auditing, compliance and certification processes in the disability and human services sector. It provides the rationale for and administrative means to implement the carrot-and-stick approach adopted by the government to exercise control over the human services. Although the aim of performance assessment is to provide evidence of an organisation’s compliance with the legislation, policy and standards outlined in chapter 9, there is no doubt that its black-andwhite approach and business orientation can be troublesome for disability service providers. Quality management Quality management is another general approach to quality improvement that has been applied across industries and sectors. Dale, Lascelles and Plunkett (1990) cited in Dickens (1994) describe the evolution of this field as follows: • Level one: inspection (of one or more characteristics of a product and comparison with a standard or benchmark). • Level two: quality control (inspection as above but with corrective feedback to the production process to improve quality and conformity). • Level three: quality assurance and accountability (systematic inspection, audit and external evaluation involving feedback to the production process and the development of quality monitoring systems). • Level four: total quality management (the application of the above processes, not just to the production task but to all aspects of the business – policy setting, strategy, organisational structure and culture). (p. 13) Although quality management as outlined above seems to have little to do with the human services, the approach has been recommended as a way of revolutionising disability services (Sluyter, 2000). Earlier in this chapter it was suggested that the administration of disability services occurs only partially within an economic rationalist framework; that governments have a monopoly and that, to some extent, they are beyond competition, being accountable only in a generalised way through the ballot box, and not in any business

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sense. Although many organisations have fund-raising programs, they depend greatly on the government for financial support. Governments and bureaucracies determine much of their buying capacity, and thus the range and availability of service options in the disability sector. It is also true that whatever quantitative performance indicators might show, the views of service users, perhaps gained through informal interviews, may be the most convincing indicators of quality. So, while accountability to the government for the expenditure of public money is important, accountability to the person with a disability for the quality of service should also be a prime consideration. Phillips (cited in O’Brien, 1997) argues the importance of considering the consumer’s perspective when assessing service quality. She suggests that when someone else (such as a bureaucrat or funding agency) decides what is good, or what should be made available, for someone with a disability, there is a real risk that unacceptable standards and lifestyles will be imposed on that person. However, there have been some recent examples of people with disabilities partnering bureaucrats in assessing service quality. For example, the Commonwealth government’s quality assurance system for employment services requires the involvement of a person with a disability as a technical expert on the audit team (FACS, 2004). This policy provides one example of power sharing between service users and staff. Power sharing ensures that organisations do not simply capture people and submit them to their standardised service menu, but ‘liberate’ them and elevate their status (O’Brien & O’Brien, 1997). In box 12.5, overleaf, McAlpine (2003) stresses the importance of listening to people with disabilities and dropping the ‘one size fits all’ approach. So workers in contemporary disability services have the difficult task of working within a quality assurance and accountability framework that is managerialist, corporate and business-oriented – an approach that does not naturally give high priority to individually determined needs, personal outcomes and qualitative experience. However, person-centred and empowering outcomes can still be achieved within this framework, as illustrated in box 12.4. Cocks (1995, p.19) suggests some of the necessary conditions for achieving quality:

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BOX 12.5 • IS THE ASSESSMENT ALWAYS RIGHT? Assuming somebody has had an assessment for the Commonwealth government at Centrelink and, if according to the result of that assessment, the person should be in a business service, then everybody will continue to say, ‘that person must be in a business service. The only thing that person can do is packing or whatever the assessment identified.’ Assuming that person wants to be an artist, he/she has done some drawing before and noticed he/she had a hidden talent. How could he/she learn to do million dollar paintings now that she has got an invisible label for life? That invisible label being that he/she can only pack or whatever was identified. Why have all these people got the right to say what skills we have and what our future will be? (p. 33)

(Roy McAlpine is a person with an intellectual disability who in 2003 was the president of Self Advocacy Sydney.)

• giving acknowledgement and priority to the interests of people • having an explicit positive values base • minimising confusion about the purpose of activities and indicators of quality • developing an atmosphere of participation and cooperation • involving those who really care about the people concerned • maximising the use of measures and structures that are culturally normative and informal • acknowledging the weaknesses of highly formal and technical performance indicators • mobilising adequate resources.

Occupational health and safety Occupational health and safety issues pose particular challenges for the disability sector. Nankervis, Compton and McCarthy (1996) note that occupational health and safety legislation in Australia has always had three major aims: • prevention • compensation • rehabilitation.

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In a very general sense, the most recent occupational health and safety legislation pursues a proactive approach, going beyond early goals that tended to be reactive to work risks. Recent legislation in some states focuses on concepts such as ‘occupational wellbeing’, the ‘welfare’ of employees, and the pursuit of a high degree of physical, mental and social wellbeing of workers (Nankervis et al., p. 411). Occupational health and safety legislation is usually complemented, and complicated, by other Acts and regulations. In NSW, for example, in addition to the Occupational Health and Safety Act 2000 there are 23 other Acts that contain occupational health and safety provisions. Across Australian states and territories, there are 129 Acts that have occupational health and safety provisions (Bohle & Quinlan, 2000). Occupational health and safety legislation aims to protect workers’ safety and to ensure their wellbeing, but it often does so with inadequate attention to ‘competing equities’; for example, the rights of people with disabilities to live in ways that suit them. In practice, occupational health and safety legislation takes precedence over other legislation, such as the Disability Discrimination Act and the disability standards (see page 225). Influential unions, in protecting their members rights to a safe environment, often neglect to address the rights of people with disabilities (who do not have an equivalent union to advocate for them). Work in the disability sector spans a wide range of job classifications, each with its own set of risk factors. For example, it is claimed that direct support work presents risks of: • occupational assault (about 48 per cent of all injuries in services for people with intellectual or mental health disability) • manual handling incidents (about 22 per cent of all injuries) • exposure to biological hazards (such as hepatitis and HIV) • shift work. (Health and Community Services Union, n.d.) Furthermore, while the mining, construction, agriculture and transport industries head the national statistics for injuries and diseases, ‘health and community services’ contribute significantly to this category. Emmett (as cited in Mayhew & Peterson, 1999) reported that in 1994–95, the annual incidence of injuries in the sector was 26.9 occurrences per 1000 wage and salary earners (with the average for all industries being 27.3 per 1000).

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Walton (2004) indicates that the disability sector must deal with particular ‘people, organisation and government issues’ (p. 3). These include: • type and degree of variation in the needs of service users • daily variation in safety requirements • the higher duty of care required • increasing risk of litigation • greater public scrutiny of organisations and staff. Although the disability sector is not unique in this respect, it must deal with ongoing dilemmas resulting from legal and policy inconsistencies. For example, as discussed below, occupational health and safety legislation and disability standards often appear to be in conflict and/or to have competing priorities. Each national government, and each Australian state, has a different legal occupational health and safety framework. Workers in the sector need to know the provisions of their particular jurisdiction. Occupational health and safety laws and regulations are continually developing in response to perceived deficiencies and new challenges posed by contemporary work environments. Ellis (2001) notes that while serious physical injury at work is now less frequent than formerly, work today involves more interactions with people, problem-solving and the application of knowledge, and this type of work causes more stress-related problems for workers. It is difficult to generalise about occupational health and safety across jurisdictions, and it is beyond the scope of this chapter to analyse the legislation state by state. You may find the summary by Bohle and Quinlan (2000, pp. 270–2) useful, as it overviewed the key features of the main legislation in Australia at the time it was written. Bohle and Quinlan (2000) note that ‘the intersection of [occupational health and safety] legislation and other bodies of law remains highly problematic in a number of areas’ (p. 314). In the disability sector, ‘one of the most complex and challenging tasks is to find acceptable ways of reconciling OHS legal requirements with mandatory disability standards’, and with contemporary service values. ACROD Limited (2004) outlined the problem in a submission to a recent Productivity Commission Inquiry in the following way:

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Disability service providers find themselves in the invidious position of trying to comply with two sets of legislative demands that, in important respects, conflict. [Occupational health and safety] regulators are not accountable to disability legislation and disability service regulators are not accountable to [occupational health and safety] legislation. (p. 4)

Clashes of disability standards with occupational health and safety legislation have become particularly challenging in accommodation services, but they occur throughout the sector. Examples include: • the resistance of a person living in supported accommodation to staff encouragement to have better personal hygiene because of staff concerns about health risks to themselves and others • disagreements among staff about whether they should intervene on health and safety grounds, and against the will of the person concerned, to make safe the electrical connections to the many appliances in a person’s private bedroom • restrictions being placed on a person’s freedom to invite guests to the house because of staff’s occupational health and safety, duty of care and safety concerns. Ultimately, achieving clarity about inconsistencies and overlaps between different Acts and regulations developed at different times and with different aims may be a task for government and the law. In fact, recent submissions to the Human Rights and Equal Opportunity Commission have proposed the development of specific occupational health and safety standards under the Disability Discrimination Act (HREOC, 2003). Even if legal clarity is achieved through amendments to laws, regulations and standards, it is likely that workers in disability services will still have to make informed judgement to achieve a dayto-day, practical synthesis of the different legislation and standards. So workers need to be knowledgeable about their responsibilities under all relevant legislation, and to be thoughtful and creative. In addition to pursuing the best interests of service users, disability workers should also take sensible steps to protect themselves and their organisation in cases where harm or injury might occur. Way (2002) argues that ‘if we have not identified people’s real needs and the potential for matters to go wrong we are doing a grave disservice to the people we support’ (p. 21). Considering what might go wrong is a good way for disability

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workers to problem solve proactively. I may be a little more pessimistic than most, but in situations where good judgement is required, where things could go wrong and where there are legal consequences, I ask myself and my colleagues questions such as ‘In court, how would a competent prosecuting lawyer portray what we did?’ ‘If the tabloids got onto this, what might the headlines be?’ ‘What should we do now so that we could demonstrate, if required, that considerable thought and planning went into our decision?’ This latter question suggests that no matter how pure your intentions or how thorough your team’s consideration of the pros and cons of the decision (that went wrong), if there is no paper trail or file notes to support your actions, you and your organisation may have great difficulty if, or when, the matter goes to court.

Working with leaders, managers and colleagues This section suggests some strategies for getting things done and for demonstrating leadership, even if you are not the boss. It may seem easier at times to simply ignore, or leave unchallenged, practices that are not in the best interests of service users; but is it ethical to do so? Is it better for you to keep your criticisms and ideas to yourself, or should you work out strategies for achieving more personcentred outcomes for those you work with, for example? To what extent should you work with advocates to improve outcomes? This section is based on the assumption that workers want to operate within an ethical framework (see chapter 10), and that it may sometimes be necessary to rock the boat. All organisations are political in nature, so good communication and interpersonal skills are essential. Of course, it cannot be expected that all workers will demonstrate these skills all the time, and there is considerable research and extensive training programs on important ‘people skills’ (such as how to listen, how to give feedback, how to deliver an essentially unpleasant message so that it is heard, and so on). This section does not attempt to explore this wide range of interpersonal skills (see chapter 14 for a fuller discussion). Rather, it describes some ways of showing leadership and effecting change, regardless of your position in the organisation. The aim is to help you become an effective advocate for service users in ways that will not alienate you from your colleagues and that will allow you to keep your job (in most cases!)

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Perusal of the ‘self-help’ shelves of popular bookstores reveals our society’s preoccupation with issues of leadership. Academic theorists and self-made (sometimes self-proclaimed) gurus regale us with explanations and directives about leadership. Elaborate distinctions are drawn between leadership (exciting) and management (boring) (see, for example, Bellman, 1992, p. 14). We are told authoritatively that the essence of leadership is emotional intelligence (Goleman, Boyatziz & McKee, 2002a, 2002b); being ‘principlecentred’ (Covey, 1991); effectively using ‘leverage’ (Kraines, 2001); and/or adapting to change courageously (Kraines, 2001; Weekes, 2002). As helpful as the leadership literature may be, the reality is that most of us have to work with leaders who have not read it and/or are not perfect in all respects all the time. Many are reasonably competent but limited in some skills. Some are interested in the big picture only, while others do not understand the big picture and stifle initiative by ‘managing down’ – getting directly involved and snoopervising at every level of the organisation. Now and again we have to work with leaders who are just mean, bad or mad. If you are going to survive, be effective and act ethically in a contemporary disability organisation, you may as well resign yourself to the reality that you are participating on a daily basis in a political (small ‘p’) environment. Jones and May (1999) describe a ‘political economy’ as an environment that emphasises: • the relationships between the stakeholders • their pursuit of different and/or competing values and interests • ultimately, their attempt to influence the behaviour of others and the culture of the setting (p. 60). Lowen’s story of James (box 12.3) and the ‘struggle’ between staff and management over what was an appropriate statement of, and response to, his needs, is an example of this political perspective at work in a disability organisation. At one level, the dispute between management and direct support staff was just about James. However, it was also a clash of values and priorities and, as such, it was an exercise in power and influence over the behaviour of others and over the priorities of the organisation. Organisations are political, so whether we like it or not, interpersonal influence, in one form or another, is a permanent and pervasive feature of all of them. Whatever your position in the organisation, you have some

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power. However, unless you are the chief executive officer (CEO) or in line management, your power does not derive from your position; it will more likely be informal and linked to your particular situation. You should identify where you have potential influence, assess its limits and try to gain an accurate appreciation of how you are perceived by people such as your CEO and director. If you find that you do not appear on their radar at all you may need to do something about that too, unless your aim is to be anonymous and invisible. Even if you are the most recent and least experienced appointee to the direct support staff in a disability service you have power, although it is not positional power. However, your position may give you the opportunity to seek explanations about issues that your colleagues have long given up on, such as: Why do capable people in the accommodation service have a curfew? Why are two of the five rooms in the house used as offices? Or, in an employment service, you might innocently ask whether anyone has ever tried to get a person the training she needs for the job she really wants, or why it is that the hourly rate for some people is so low. If you are on the bottom rung of the organisational ladder you will probably have many peers, and together you will have some influence through numbers. However, if most of you are casual or on short-term contracts, as is common these days, your services may be easily terminated. Woodford (2002) suggests that ‘Precarious employment not only affects employees. It also means precarious treatment for people with disabilities’ (p. 11). So, if it is dangerous to step out of line, you need allies who can support and speak for you. Work in the disability sector can be, under some circumstances, quite demanding and even dangerous, and you certainly need practical support from your colleagues in these situations. However, even on a day-to-day basis, you need their support. Support is earned through being a good colleague yourself and being supportive of others, and not just when you need them. Altruism aside, it is essential for your own wellbeing and an act of self-interest to behave in ways that provide you with friends, allies and, more bluntly, a power base at work. ‘Managing up’ is a term for the strategies you might use to influence those above you in the organisation. Try to find opportunities to interact with your managers and give them positive feedback. They may not get much positive feedback. As long as it is done

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sincerely and sensitively, it may have a good effect on their behaviour, and it won’t do you any harm either. Your ability to ‘manage up’ will be enhanced if you try to appreciate the perspective of your managers. They may be juggling many competing demands, and unless you show some sympathy for their position, you are unlikely to get much of a hearing when you raise the issues you care about. In Shaddock (2003), I describe Connie O’Brien’s somewhat different case for perspective-taking as follows: If you want to be heard, you should make sure you know your opponent’s case better than they do. Knowledge of the opponent’s case allows you to communicate with them in language and concepts they understand and appreciate. If you can demonstrate that you understand their issues and their challenges, then you have a better chance of exercising influence. (p. 91)

Words are cheap, however, and a more convincing way of getting support from your managers is to demonstrate that you have their interests and the interests of the organisation at heart (perhaps in addition to your own interests and those of service users). You may not be able to sign up to all of your manager’s goals and aspirations, but you should demonstrate that you are rigorously pursuing key institutional goals. And if you cannot agree with any of your organisation’s key goals, and you do not have the support to change them, in the interests of your personal wellbeing you should perhaps look for other work that is more compatible with your values. How you are perceived, particularly by those above you in line management, will be one of the determinants of the extent of your influence. Crass as it may seem, you have to ensure that the leadership knows when you and your colleagues have done good things that reflect well on the organisation and its leadership. For example, if your clients have been involved in a community activity such as the ‘Clean Up Australia’ campaign, get some recognition for them through the local newspaper or television, and make sure your manager knows about it. Ideally you will achieve this exposure with delicacy and style, perhaps in a modest and understated way. However, in the era of hype, spin and self-promotion, only the rarest of individuals will have influence if they are always unobtrusive and quiet achievers. Another way of developing your influence is to perform so well

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in particular aspects of your designated role that you become invaluable, if not indispensable, to your managers and to your organisation. If, for example, you are the one who can work ethically and successfully with demanding parents or smooth relationships with external advocacy groups, boards and tribunals, or if you are one of the few staff members who knows how to input data for compulsory reports for funders, you will have considerable leverage in your organisation. Work settings are not the usual places to find examples of unconditional love, so unless your manager is your mother (or your lover, and that raises possibilities for an article in a different type of publication), you will not have influence unless you actually earn it. If you think of influence as a little like a bank account into which you must put regular deposits before you want to make withdrawals, it is advisable to build up a positive balance with managers, colleagues, service users, their families and their advocates. The sensible and ethical use of the influence you have earned will allow you to improve the way everyone responds to the needs of service users.

Conclusion This chapter is based on the premise that workers in the disability sector will be more successful and more satisfied if they understand the many factors that shape the sector and their organisation. The chapter developed a number of important themes that relate to the role of workers, particularly those at the lower end of the employment hierarchy. First, the work environment is continually changing, and not always in ways that put the person with a disability at the centre. Workers need to operate within an ethical framework, and they should be prepared to take on an advocacy role, particularly during periods of organisational change and restructuring. Second, not all leaders and managers in the sector are on top of the relevant issues, and they are certainly buffeted by the forces that affect direct support staff. As the disability sector itself is not entirely logical or coherent, and as no one has all the answers, workers in the sector need to be thoughtful and streetwise if they want to be effective. Third, as a lack of resources is a perennial problem for the sector, workers should strive to be resourceful.

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Fourth, everyone in the sector needs to be knowledgeable about relevant legislation, the importance of risk management and the potential for litigation. Finally, regardless of your position in the organisation, if you act ethically and strategically you can exert influence and have a positive impact on the lives of the people you support.

Learning activities 1

Do a separate SWOT analysis (Strengths, Weaknesses, Opportunities and Threats) of your organisation from the perspective of each of the following: • employees • employer • government • service users and their families. Consider the implications of the different analyses, and identify where perspectives agree and where they clash. This can be done as an individual or a group activity. If different groups undertake the SWOTs, have a plenary or feedback section where all perspectives are discussed and debated. Once all the analyses have been considered, develop a ‘to do’ list that contains realistic and achievable strategies that you and your colleagues can implement to improve outcomes for people with a disability. Give particular attention to occupational health and safety responsibilities.

2

Through group work or personal reflection, brainstorm the areas in which workers in the disability sector can improve the quality of supports for people with disabilities. List practical strategies that could be used to ensure that these changes would actually occur.

3

Try some perspective-taking. Imagine you are the CEO or director of a service for people with disabilities – a service that you know quite well. For example, you might be thinking of an agency that provides accommodation, advocacy, employment or recreation support. List three practical changes that you would make to improve the quality of services received by service users.

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Through group work or personal reflection, list practical strategies that could be immediately implemented to support and influence the leadership of your organisation to improve the quality of support for service users.

References ACROD (2004). Submission to the Productivity Commission in response to its inquiry into workers’ compensation and occupational health and safety frameworks. Canberra: ACROD. Australian Institute for Health and Welfare (2002). Unmet need for disability services: Effectiveness of funding and remaining shortfalls. AIHW Cat No. DIS 26. Canberra: AIHW. Baker, K. (2002). Partnerships of convenience. Disparity: Policy, practice and argument, 1, 2, 9–12. Baker, K. (2003). The prickly politics of welfare reform. Disparity: Policy, practice and argument, 2, 1, 4–6. Bellman, G. M. (1992). Getting things done when you are not in charge. San Francisco: Berrett-Koehler. Bohle, P. & Quinlan, M. (2000). Managing occupational health and safety: A multidisciplinary approach (2nd edn). Melbourne: Macmillan. Cocks, E. (1995). Quality service provision. Paper presented to the 5th CIDA conference. Interaction, 8, 4, 13–19. Covey, S. R. (1991). Principle centered leadership. New York: Simon & Schuster. Department of Family and Community Services. Quality assurance handbook, version 2. Retrieved 20 October, 2004 from . Dickens, P. (1994). Quality and excellence in human services. Chichester: John Wiley. Edwards, L. (2002). How to argue with an economist. Cambridge: Cambridge University Press. Ellis, N. (2001). Work and health: Management in Australia and New Zealand. Melbourne: OUP. FACS see Department of Family and Community Services Goleman, D., Boyatzis, R. & McKee, A. (2002a). Primal leadership: Realizing the power of emotional intelligence. Boston: Harvard Business School Press. Goleman, D., Boyatzis, R. & McKee, A. (2002b). The new leaders: Transforming the art of leadership into the science of results. London: Little, Brown. Health and Community Services Union (n.d.). Health and safety, compensation and rehabilitation. Retrieved July 30, 2004 from . HREOC see Human Rights and Equal Opportunity Commission Human Rights and Equal Opportunity Commission (2003). Productivity Commission Review of Disability Discrimination Act. Canberra: HREOC. Hummel, R. P. (1994). The bureaucratic experience: A critique of life in the modern organization (4th edn). New York: St. Martin’s Press. Industry Commission (1997). Assessing Australia’s productivity performance. Canberra: AGPS. Jones, A. & May, J. (1999). Working in human service organisations. Sydney: Longman. Kraines, G. (2001). Accountability leadership: How to strengthen productivity through sound managerial leadership. New Jersey: Career Press. Laugher, D. (2002). Uncreative tension. Disparity: Policy, practice and argument, 1 , 2 30–2. Lowen, K. (2002). The numbers game. Disparity: Policy, practice and argument, 1, 3, 7–9. Mahew, C. & Peterson, C. L (Eds). (1999). Occupational health and safety in Australia: Industry, public sector and small business. Sydney: Allen & Unwin.

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McAlpine, R. K. (2003). People with disability demand a say and equal rights as citizens. Interaction, 17, 1, 32–7. McIntosh, G. & Phillips, J. (2002). Disability support and services in Australia. Retrieved August 8, 2004 from . Nankervis, A. R., Compton, R. L. & McCarthy, T. (1996). Strategic human resource management (2nd edn). Melbourne: Nelson. Nirje, B. (1969). The normalization principle and its human management implications. In R. Kugel & W. Wolfensberger (Eds), Changing patterns in residential services for the mentally retarded. Washington, DC: President’s Committee on Mental Retardation. NSW Sport and Recreation (2004). Risk management. Retrieved 8 October, 2004 from . O’Brien, P. (1997). Human services: Creating or alleviating disability? In P. O’Brien & R. Murray (Eds), Human services: Towards partnership and support (pp. 64–81). Palmerston North, NZ: Dunmore Press. O’Brien, P. & Murray, R. (Eds). (1997). Human services: Towards partnership and support. Palmerston North, NZ: Dunmore Press. O’Brien, J. & O’Brien C. L. (1997). A tune beyond us, yet ourselves: Power sharing. In P. O’Brien & R. Murray (Eds), Human services: Towards partnership and support. (pp. 203–14). Palmerston North, NZ: Dunmore Press. Phillips, K. J. (1997). Quality of life versus quality of service. In P. O’Brien & R. Murray (Eds), Human services: Towards partnership and support. (pp. 203–14). Palmerston North, NZ: Dunmore Press. Saunders, P. (2002). The ends and means of welfare: Coping with economic and social change in Australia. Melbourne: Cambridge University Press. Shaddock, A. (2003). People with disabilities in the era of the ‘triple bottom line’. Journal of Intellectual & Developmental Disability, 28, 1, 90–3. Sluyter, G. (2000). Total quality management. AAMR News & Notes, January/February, 1, 4–7. Steering Committee for the Review of Commonwealth/State Service Provision (2003). Report on government services, vol. 1. Canberra: Productivity Commission. Steering Committee for the Review of Commonwealth/State Service Provision (2003). Report on government services, vol. 2. Canberra: AusInfo. Stewart-Weeks, M. (2003). See how they run. Disparity: Policy, practice and argument, 2, 2, 4–9. Walton, T. (2004). Competing tensions (PowerPoint presentation): AFFORD (Australian Foundation for Disability). Retrieved July 30, 2004 from . Way, R. (2002). Risk, contracts and service users. Disparity: Policy, practice and argument, 1, 1, 20. Weber, E. P. (2003). Bringing society back in: Grassroots ecosystem management, accountability and sustainable communities. Cambridge, MA: The MIT Press. Weekes, R. (2002). Leadership and courage. Disparity: Policy, practice and argument, 1, 3, 25–8. Wolfensberger, W. (1983). Social role valorization: A proposed new term for the principle of normalization. Mental Retardation, 21, 6, 234–9. Woodford, B. (2002). A transient workforce. Disparity: Policy, practice and argument, 1, 1, 9.

13

Staff learning and development Karen Nankervis and Jan Matthews

Learning objectives After reading this chapter and completing the activities you should be able to: • understand the relationship between organisational capacity and staff capacity • understand the broader training and learning context in the human services sector • define performance standards and explain how they relate to learning and development of staff • understand ways to identify service user needs and aspirations, and use these as determinants of staff learning and development priorities • identify the factors critical to effective learning and the transfer of skills into practice • plan the delivery and evaluation of workplace learning strategies.

Introduction The skills and knowledge of those who provide or manage supports to people with disabilities are integral to the achievement of critical service outcomes. Staff learning and development take place through a variety of means that are related to the leadership and

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supervision provided by managers and supervisors, as well as the mission of the organisation itself. Typically, modern organisations develop a mission or vision statement to clarify their broad goals for staff, for users of the service, and for the general community. In addition, most organisations have a strategic or business plan that translates the mission into action and provides direction for the work of staff to fulfil the mission. Success in achieving the objectives of a strategic plan will be strongly influenced by the knowledge, skills and attitudes of staff; so staff learning and development play an important role in achieving organisational objectives. This chapter provides information about staff learning and development that will be of use to supervisors and managers and, in particular, to professionals who directly support people with a disability. As a participant in staff learning and development activities, you will learn about what constitutes effective teaching and learning, and therefore what you may expect in learning situations. You will also learn about techniques you can use to support your colleagues, and how your supervisor and organisation can support you. If you are a supervisor or manager, you will learn how to plan for and deliver some basic learning and development opportunities in the workplace, as well as supporting staff to use the skills and knowledge gained through training in their day-to-day practice. The following issues are discussed as a means of promoting staff learning and development: • defining performance by being clear about what staff need to know and be able to do • monitoring to determine what staff actually know and do • instructing using formal and informal methods of building staff capacity and competency • providing feedback to reinforce knowledge, practice and learning, or to correct performance problems • evaluating the effectiveness of learning and development activities and their impact on the quality of supports provided to people with disabilities.

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Defining performance – what do staff need to know? Clearly defined roles for staff are essential for three main reasons: • so that staff know what is expected of them • to identify staff learning and development needs • to assist in the management of organisational change and transition (Schalock, 1999). Role ambiguity, where staff are unsure about their role, has been found to contribute to staff stress and low morale (Hatton et al., 1999) Job role information often comes from job descriptions that are vague or outdated. One method for defining job roles and identifying staff training needs is to have in place clear descriptions of the outcomes of staff activity, as well as descriptions of the activity. These are referred to as performance standards. The development of performance standards not only clarifies the activities of staff, it allows job roles to be based on what is needed and expected by service users, not just by staff. La Vigna, Willis, Shaull, Abedi and Sweitzer (1994) state that the rationale for developing performance standards is that they provide the basis for: • performance monitoring • supervisory and management actions to improve and maintain performance • staff training. They also cite research showing that the very action of establishing performance standards can lead to improved performance and service quality. The development of performance standards can result in clarity of expectations for staff and may lead to increases in staff commitment and motivation (Locke & Latham, 1990; Williams, 1998). Also, it has been found that specific performance standards lead to higher performance than vague standards (Williams, 1998). Sources of performance standards La Vigna et al. (1994) discuss three sources of performance standards: • individual-based standards

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• administrative standards • externally imposed standards. Individual-based standards

These standards relate to the needs and aspirations of individual service users. Standards can be stated in terms of individual change, such as skill acquisition, or of improvements in quality of life. An example of such a standard is: ‘Individual service users will regularly participate in community-based activities of their choice. This will be verified by weekly records of activity and annual mapping of service users’ relationships and connections.’ Administrative standards

These standards arise from the administrative requirements of the organisation, and concern such matters as budgets, staff–client ratios and reporting requirements to a funding body. While they are based on administrative requirements, they may still relate to positive outcomes for individual service users, staff and the organisation. An example of an administrative standard is: ‘House staff will attend weekly meetings where they will report and discuss progress in implementing the individual plans of service users.’ Externally imposed standards

Organisations may be subject to externally imposed standards (for example, from government departments). They may be imposed through legislation, funding agreements or the policy requirements of various levels of government, and concern such matters as occupational health and safety, privacy and disability service standards. Developing performance standards La Vigna et al. (1994) list a number of principles that should be followed in developing performance standards. Essentials should be emphasised

It would be impossible to identify all the standards that relate to the needs and preferences of individual service users and the requirements of the organisation; so it is important to identify and develop only the most important performance standards. One way to do this is to use the last step in a performance sequence. For instance, a performance standard may relate to the quality of an individual plan that has been written for a service user

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rather than to each step in the process of developing the plan; for example: ‘Each service user will have an individual plan prepared for them. The plan will be based on the person’s needs and preferences and will include clear goals, objectives, and strategies for action.’ Another way to emphasise the essentials is to focus on the needs and aspirations of service users to determine priorities for the organisation and teams of staff. Realistic criteria should be used

Standards should be realistic and achievable, with consideration of the available resources, including finances, number of staff, and the skills and knowledge of staff. For example, in a situation where service users have employment as gardeners, setting a target of doubling the generated income of the mowing crew may be unrealistic in a competitive work environment. Standards should be defined operationally

An operational standard is a description of a performance in reliably observable terms. Simply stated, an operational standard specifies what, when, who, and how: • What exactly is the desired performance? Details of what the staff member or organisation should do are specified. For instance, rather than saying that staff will communicate well with service users, a specific description would say that ‘staff will communicate with service users using a range of augmented communication methods including Makaton, Auslan and communication devices’. • When is the performance expected to occur? This involves timelines for completion, or for engagement in the performance; for example, weekly, annually, or within a specified period. • Who is responsible for carrying out the performance standard? Specifying the person or position responsible for the action is important for the purpose of clarifying roles. • How will performance be verified? Verification involves an assessment of whether the standard has or has not been met. Often verification can be achieved through: –

the existence of documents, such as written individual plans, professional reports and progress notes, or

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direct observation, such as noting that the service user is engaged with community-based services and opportunities, or has expressed satisfaction with the supports provided.

Dimensions of performance standards While the guidelines for the development of performance standards just discussed may be useful, on their own they do not guarantee quality outcomes. La Vigna et al. state that an understanding of the two dimensions of performance standards is also important. The dimensions are: • what the performance standard reflects •

the performance standard type.

What the standard reflects

According to Schalock (1999), in striving to manage high quality disability services we should ask: ‘How do we know whether we have succeeded in meeting the demands for both person-centred outcomes and increased accountability?’ (p. 68). To be accountable, an organisation must show that financial, occupational health and safety, and abuse and neglect issues are addressed for the personal safety of staff and service users and for the ongoing viability of the organisation. All these issues are nonnegotiable, yet they must be managed in a service climate that emphasises service user self-determination, autonomy, choice and decision-making. In this context, performance standards need to reflect both efficiency (for example, financial efficiency) and values (for example, person-centred approaches). Efficiency standards often relate to issues such as waiting list duration, placement rates and costs. Value standards relate to such issues as service user satisfaction, self-esteem, friendships and quality of life, and service responsiveness. Types of standards

There are two types of performance standards: • process standards •

outcome standards.

It is important to understand the two types because there is a tendency to assume, incorrectly, that simply following a performance process will result in quality services and supports. For example,

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although staff may review individual plans on a regular basis (following prescribed processes), this may not necessarily lead to the achievement of the objectives of those plans (producing positive outcomes). For this reason, it is important to develop both process and outcome standards across job roles and organisations. Process standards alone are not an adequate indication of the performance of an organisation. PROCESS STANDARDS

Process standards specify how staff or organisational activities should be carried out. They ensure that there is procedural reliability where adherence to the process is likely to result in positive outcomes for service users, staff or the organisation. Some examples of process standards are: • Within seven days of an assessment of eligibility, the case manager will complete an assessment of needs report for the person following the client services practice manual procedures. • After referral to a service, the case manager will follow up the referral within 24 hours, and weekly after that. • For every service user there is a current individual plan that follows each element of the individual plan checklist. OUTCOME STANDARDS

Outcome standards provide the basis for measuring an organisation’s success in meeting its goals and objectives and, therefore, achieving its mission. An outcome standard specifies the expected product resulting from the provision of services and supports. Because services are established for the benefit of service users, the only meaningful outcome standards are those that are written in terms of service user outcomes. Some examples of outcome standards are: • Service users will rate the services they receive as satisfactory in an annual survey. • Recidivism rates for clients with offending behaviours will decrease as measured monthly by the outreach worker. • All the objectives identified in each person’s individual plan are achieved as determined by an annual review conducted by the case manager. The annual review will incorporate measures of client satisfaction, behaviour change, skill acquisition, increased choice and decision-making, and involvement in mainstream services.

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Monitoring – being aware of what staff know and do Gathering information about work activities and progress and the quality of work performance is a critical component of quality assurance and improvement in organisations. Performance monitoring is important for effective management and supervision as well as to permit feedback and to identify the learning needs of staff. It may occur naturally as part of day-to-day operations, but it also needs to be planned for. Apart from gathering information for tracking staff progress or providing feedback, monitoring can reinforce the priorities of the organisation. Hence the frequency with which a manager monitors a subordinate’s performance may help shape that subordinate’s beliefs about the relative importance of his or her various work activities. (Larson & Callahan, 1990, p. 531, cited in Williams, 1998)

The particular aspects of a staff member’s activities that are monitored are also important. For instance, if the monitoring of service users’ individual plans only extends to whether or not a plan is written, the message may be conveyed to staff that the priority is to comply with legislative requirements, and that the quality, content or implementation of the plan is irrelevant. Monitoring that emphasises the critical service accomplishments described by O’Brien (1989, and as described in chapter 5) will convey to staff the organisation’s priority of person-centred planning and action. Besides quality assurance, internal accountability and reinforcement of priorities, performance monitoring provides an opportunity for management and supervisory action to improve and maintain staff performance (La Vigna et al., 1994). Through monitoring, feedback that is reinforcing or affirmative for the staff member can be provided, while gaps in performance, growth, opportunity and training can be identified and addressed (McNamara, 2002). Most employees of organisations are subject to some form of performance monitoring on a regular basis that begins when they commence employment (for example, in relation to meeting deadlines, or arriving at work on time). However, monitoring is often used to find out what is going wrong rather than what is going right. In this climate it is understandable that staff may feel apprehensive about monitoring, particularly if they only get feedback or attention from their supervisor when something goes wrong.

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If good practice in monitoring is being implemented, the following practices are likely to be in place (La Vigna et al., 1994): • Staff are involved in setting performance standards as well as planning and implementing monitoring processes to increase their ownership of the standards, and the standards’ relevance to them (Williams, 1998). • Responsibility is shared by conducting monitoring across the organisation – across all levels, roles and teams – so that there is no undue focus on any specific job category. • Commitment to the monitoring procedures from staff is gained by ensuring that what is being monitored is seen by them as important, or by explaining how the monitoring process will lead to better outcomes for service users and staff. • The influence of peers is recognised by the establishment of mentoring arrangements, or the pairing of less experienced staff with more experienced, positive role models. • Staff are encouraged to self-monitor, to give them the opportunity to reflect on their current abilities and levels of performance against the standards. • Professionalism is emphasised through providing feedback, recognising and rewarding effort and providing staff development opportunities. • The difficulties staff may be experiencing and how hard they are working is acknowledged by appreciating their efforts, and by pointing out the positive effects of their work. • Opportunities and space are provided for staff to comment on the information gathered through performance monitoring. This commentary is critical for the identification of issues such as resource limitations, illnesses, and abnormal or unexpected events.

Instructing – building staff capacity Learning and development should be ongoing for all staff in human services organisations. Commonly, learning and development needs are identified when it is established that there is a gap between the standard of performance expected from staff and their actual level of

Staff learning and development

performance. This may indicate a need to improve staff members’ knowledge and skills, or to change attitudes (Kroehnert, 2000). Staff learning and development needs can also arise when new procedures are introduced, or there are new directions in service delivery. It also must be recognised that staff learning and development opportunities are important for personal development, and can be used to reinforce good practices or as an opportunity for staff to explore issues and refresh themselves. Certo (2003, p. 454) has presented the predetermined elements of staff training as a cycle of events: 1

assess training needs

2

select objectives for training

3

decide who will participate

4

choose training methods

5

conduct training

6

evaluate training.

Steps 2 to 4 (in bold type) are the requirements for planning a formal training event. Often staff training needs are identified through an analysis of staff skills and knowledge against job descriptions (Salas & Cannon-Bowers, 2001) or standards of competency such as the Australian National Competency Standards for Disability Work (Non-Government Disability Training Unit, 1998). Such a process is illustrated in figure 13.1.

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National Competency Standards for Disability Work

Analysis of job descriptions

Survey of staff (level of importance and level of competence in skills)

Identification of staff training needs

Agency training plan

FIGURE 13.1 A PROCESS FOR CONDUCTING A STAFF TRAINING NEEDS ANALYSIS

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BOX 13.1 • THE MILPARINKA AGENCY TRAINING PLAN Milparinka Adult Training Unit provides day activities and learning supports for people with an intellectual disability. A requirement of the funding and service agreement with the Victorian state government is that all agencies will develop an agency training plan. While the standard procedure for developing an agency training plan uses position descriptions as the starting point for identifying staff training needs (Non-Government Disability Training Unit, 1998), Milparinka used individual service user needs and preferences as its starting point while still working within the framework of the community services training package (which specifies the national competency standards for workers employed in the disability sector). The Milparinka model of agency training plan development was designed to guarantee that the needs and aspirations of individual service users would be met, as staff would have the skills and knowledge to enable them to provide appropriate supports. The agency training plan for staff would therefore be driven by the needs and aspirations of the people attending Milparinka (Taylor, 2000). The Milparinka model was established as follows. Step 1 Identification of client needs, preferences and aspirations •

assessment and information gathering

•

identification of long term goals (dreams) and short term objectives (next steps)

•

identification of actions (such as programs, activities and supports) to achieve the person’s needs, preferences and aspirations

•

development of individual plans

Step 2 Development of training needs analysis questionnaire •

customisation of the competency standards to include the needs, preferences and priorities of Milparinka service users

•

development and distribution of a rating scale to determine what staff regard as their own current level of competency

Step 3 Analysis of sources of data •

analysis of staff responses

•

identification of the goals and objectives contained in individual plans

•

matching of client needs and aspirations with staff competency

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Step 4 Development of the agency training plan •

identification of priorities for staff training needs priorities

•

identification of potential sources of training

•

allocation of budget

Step 5 Evaluation and review of the agency training plan •

regular review of progress toward the achievement of individual plan objectives

•

assessment of service user and family satisfaction

•

assessment of staff satisfaction with training

•

staff performance review (through ongoing monitoring and supervision)

•

revision of the agency training plan

As a result of the analysis of the individual plans developed for the people attending Milparinka, a number of client goals and objectives were identified in the areas of challenging behaviour, independent living skills, human relations, social skills, communication and recreation and leisure. When staff were surveyed in relation to their level of competence, their training needs became obvious. After goals and objectives from service users’ plans were matched with staff competencies, a list of staff training priorities was developed. These training needs were then incorporated into the agency training plan along with other organisational training needs. Priorities for the current plan were to assist to staff in the development of the skills to be able to teach alternative communication skills to service users, understand the cultural needs of people from non-English speaking backgrounds, develop interventions to manage challenging behaviours, and implement human relations programs. These priorities were confirmed through interviews with service users and their families.

Person-centred organisations can also use the individual plans of service users as a source of information for the development of performance standards. An analysis of staff knowledge, skills and practices in the context of the goals, aspirations and needs of service users will identify relevant and critical staff training needs. Box 13.1 gives an example of how an organisation can achieve this. McNamara (2002) has described and compared four major categories of building staff capacity training: self-directed learning and other-directed learning, and informal and formal training.

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Self-directed learning occurs when the learner decides what they will learn and how they need to learn in a particular situation. When a staff member approaches a supervisor and asks to be shown how to perform a task they have self-directed their learning. Otherdirected learning occurs when people other than the learner decide what they will learn and how that will be achieved. Induction sessions are an example of other-directed learning situations, because new staff are required to attend and the organisation has decided what they need to learn. The main distinction between informal and formal training is that informal training has ‘no predetermined form’ and ‘formal training has a predetermined form’ (McNamara, 2002, p. 130). Reading books, attending presentations and on-the-job training techniques are all examples of informal training. Although presentations and on-the-job training can be scheduled for specific times, they do not meet the criteria for predetermined training events. Training is considered formal when planning has predetermined: • learning objectives • learning activities to achieve the objectives, and • evaluation of the training to see whether it meets the objectives. The most obvious examples of formal training are workshops and courses offered by educational institutions Training of staff to perform at the level of competence required to achieve the organisation’s mission can occur at two stages: • before the staff member enters the field of service (pre-service) • during the staff member’s period of employment (in-service). The main purpose of the training may be different at each stage. In pre-service education, the student is introduced to ways of working in a professional discipline, or field of study, that can be applied in a number of (often diverse) workplaces; for example, employment and accommodation disability services. Where preservice education is narrowly focused, the student learns the skills necessary to work effectively in specific jobs in the field; for example, with people with vision impairment. On the other hand, in-service education is usually designed to achieve a particular organisation’s goals by extending or updating

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staff competencies. This is important because the demands of the workplace change over time; skills learned in pre-service training may not be the skills required later in a career. While structured learning opportunities such as courses and workshops are easily recognised as staff learning and development activities, important learning also happens on a day-to-day basis in the workplace, and both workers and supervisors need the skills to support their colleagues by providing learning opportunities. This section considers not the skills required by trainers in structured learning situations such as workshops or lectures, but those required by all staff on a day-to-day basis in the workplace, whether they are in direct support roles or supervisory roles. These skills are also essential for those who are training to become supervisors or are in the process of transition to a supervisory role. Training methods Effective workplace learning will occur when a combination of training methods is used (Jahr, 1998). An effective learning situation can incorporate a range of the strategies described below. Instruction

Instruction can involve written and/or verbal information. It can include procedure documents, written guidelines, videos, online resources, and telling the person how or why something is done (oral instruction). One procedure for providing a brief oral instruction is: • giving the reason for the instruction • checking the learner’s current level of understanding • explaining the principle or strategy • giving an example • checking understanding (for example, by asking the learner to generate a different example) • discussing a procedure for implementation. Box 13.2 gives an example of this procedure. Role play

In role play situations the supervisor and/or the staff member act out a procedure in a simulated situation. This is usually done when

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BOX 13.2 • PROVIDING ORAL INSTRUCTION TO STAFF Scenario: A manager and a supervisor are discussing the use of sampling as a way of gathering information for monitoring purposes. Sampling typically involves checking samples of performance on a random basis (for example, inspecting a random selection of catering packs an employee has assembled to determine the quality of their work). GIVE A REASON

The manager explains: ‘Monitoring is important because it gives us an opportunity to tell staff what they have done well and identify any areas where we need to help them improve. But you can’t monitor everything they do. That would be unworkable – staff would resent the level of scrutiny, and there would be an overwhelming workload for the supervisor who then can’t monitor the important things like the content of individual plans rather than just checking that they’ve been done. Overmonitoring can decrease staff acceptance and may be impractical. So we need a way to monitor the important things without over-monitoring.’ CHECK THAT THE STAFF MEMBER UNDERSTANDS

Manager: ‘What are your thoughts on this?’ Supervisor: ‘Yes, I can see that we can’t monitor everything and that we need to focus on the important things when we are monitoring, but I’m not sure how to do this.’ EXPLAIN THE PRINCIPLE/STRATEGY

Manager: ‘One way to monitor performance is to use a procedure called sampling. Instead of trying to monitor everything, you choose a sample of instances.’ GIVE AN EXAMPLE

Manager: ‘For example, you can sample across staff or service users. Instead of trying to monitor the quality of every individual plan, you can look at a sample of plans; say 10 plans out of every 50. This could mean one plan from every staff member, randomly selected, or a sample across the team. That way you can look at the plans in detail and you will get information about how each staff member is going in preparing good plans.’ CHECK THE STAFF MEMBER’S UNDERSTANDING

Manager: ‘Can you think of another situation where you would want to use sampling?’ Supervisor: ‘Yes, I think that the accuracy and quality of case notes being written by staff needs to be monitored. I could use sampling by looking at one randomly selected case file kept by each staff member.’ DISCUSS PROCEDURES FOR IMPLEMENTATION

Manager: ‘Let’s plan how you are actually going to do this.’ The manager and supervisor then discuss the specific details about how the sampling procedure will be implemented.

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the staff member needs to practise a strategy before implementing it with a client. Typically the supervisor and staff member take on the roles of client and worker. Role play can also involve giving the staff member a scenario and asking them to identify what they would do and the reason for their response. Modelling

Modelling involves learning through observation as a supervisor or staff member demonstrates the skill, procedure or application of knowledge. Modelling can be used in role play situations but, to ensure the transfer of skills into real situations, it should also occur in the actual situation where the skills or knowledge are required. A typical modelling situation includes the following steps: • drawing the learner’s attention to the critical aspects of the skill or procedure being modelled; for instance, by telling them about relevant aspects such as the principles being followed or the elements necessary for the procedure to be effective. One approach to ensure the learner will observe carefully is to ask them to pay attention to certain details without telling them exactly what they are going to see and hear; for example: ‘Notice how I get the client’s attention’ • checking the learner’s understanding by asking them what they are going to pay particular attention to • giving feedback on the learner’s understanding • modelling the skill or task • getting the learner to tell you what you did and how the principles or critical aspects were demonstrated (if necessary, ask specific questions like: ‘How did I get the client’s attention?’) • giving the learner feedback about their report on what they saw demonstrated • getting the learner to do it • ensuring that the learner has feedback about their performance. Giving feedback

Feedback on staff performance should be provided at every stage of learning. The purpose of feedback is to give the staff member

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accurate information about what they are doing right or to assist them in correcting their performance. See pages 341–343 for information on how to provide feedback and, importantly, how to prompt the learner to reflect on their own performance and give themselves feedback. Checking understanding

When you are supporting another staff member in learning and development you should frequently check their understanding throughout the process. Asking ‘Do you understand?’ or ‘Is that clear?’ are not effective ways of checking understanding. Instead, ask questions about what is being taught, or ask the staff member to give you other examples or situations that demonstrate their understanding. You could also get the learner to apply their skills or knowledge in a variety of different situations to check their understanding and retention. Putting training and learning into practice It has been well established that training will have little effect on improving staff performance if there is no organisational and supervisory action to support the retention and use of the skills and knowledge developed (Ager & O’May, 2001; Cullen, 1988; Ziarnik & Bernstein, 1982). Organisational and supervisory involvement and the provision of feedback are essential for the maintenance of skills and knowledge gained through staff training and the application of training to day-to-day settings (Parson & Reid, 1995). For example, Richman, Riordan, Reiss, Pyles & Bailey (1988) found that instruction alone did not result in improved engagement levels between staff and the people using disability support services. However, they found that when instruction to staff was combined with feedback from supervisors, engagement levels between staff and service users increased. Formalised procedures for providing feedback, supervision and support have been demonstrated to play an essential role in the effectiveness of staff training to achieve changes in the workplace (Agar & O’May, 2001). Providing feedback An important part of supervision and performance monitoring, whether the monitoring is a planned or an informal process, is giving

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feedback. Feedback is the cornerstone for motivating staff, and for increasing, maintaining, or correcting performance. Also, feedback as an action that results from performance monitoring can maximise the quality of an agency’s services and programs (La Vigna et al., 1994). However, giving feedback is much more than just telling someone that they have done a good job, or what they have done wrong. Coens and Jenkins (2000, pp. 118–20) note the following conditions for effective feedback: • The feedback giver is a credible source and has relevant expertise and knowledge. • The feedback giver is trustworthy and sincere. • The feedback is conveyed with good intentions; the giver has the receiver’s best interests at heart, and/or it is apparent that the feedback is intended to serve a worthy purpose. • The timing and circumstances of the feedback are appropriate. Feedback is effective when it is timely and conveyed under conditions that are conducive to learning, and when the person is open to receiving it; for example, negative feedback is given privately. • The feedback is given in person so that the receiver can hear the giver’s intonation and observe their expression and body language, and there is opportunity for the receiver to ask questions and clarify the message. • The feedback message is clear and successfully communicates a message or new information about something the receiver has done, not done or needs to do. • The feedback is helpful to the receiver and contains useful information or new insights. Corrective feedback

Before assuming that corrective feedback should be given to a staff member it is necessary to determine the reason for the performance deficit. There may be a lack of the structure or support necessary for the staff member to do what has been asked. For example, job procedures may need to be changed to permit staff to do what is expected of them (La Vigna et al., 1994). When it is clear that appropriate structures and supports are in

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place it may be necessary to provide corrective feedback to help the staff member develop skills, knowledge, practices or attitudes consistent with identified performance standards or the requirements of the organisation and its clients. McNamara (2002) notes that when giving corrective feedback it is important to: • be clear and specific • emphasise positive aspects of the person’s performance • focus on the behaviour rather than the person, and refer to behaviour that can be changed • talk about behaviours in relation to achieving organisational goals, not the person’s characteristics. If necessary, show them how to do things differently • avoid generalisations • try to give feedback in a relevant setting • give the feedback as soon as possible after the behaviour to which it relates. It is worthwhile for supervisors to consider how they can encourage staff to self-correct and provide themselves with accurate feedback about the things that they do well. When prompting self-correction, the supervisor could ask the staff member to give their own ideas about what they would do differently next time. Confirming or rewarding performance

Just as important as corrective feedback is feedback that confirms for staff that they are doing the right thing or that reinforces their actions, so that desired skills, behaviours and attitudes increase. Often supervisors overlook the things that staff do well or simply take them for granted. Positive feedback also tells staff that their efforts and good work are appreciated. Positive feedback in itself can improve staff performance, and it has more long term effects on performance improvement than punishment (La Vigna et al., 1994). Positive feedback can be thought of as reinforcement of effort or performance. Reinforcement can be intrinsic or extrinsic. Intrinsic reinforcement comes from the job itself and the sense of accomplishment or satisfaction it gives the staff member. Extrinsic reinforce-

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ment comes from outside the person in the form of feedback and recognition from supervisors and peers, and pay or other rewards. Intrinsic reinforcement requires the staff member to accurately recognise their correct performance as well as their mistakes. Supervisors can play an important role in shaping a staff member’s ability to reflect accurately on their own performance. With extrinsic reinforcement, the principles for giving positive feedback are the same as the general rules for giving effective feedback described earlier. However there are some further guidelines for giving effective positive feedback: • Make sure that positive feedback (and rewards) are clearly tied to the performance that is desired. • Give positive feedback when, or soon after, you see the desired performance. • Make sure you clearly communicate what the staff member has done correctly or well. • Celebrate achievements. • Let staff hear the positive comments from the service users and others. • Understand what motivates each person and, within appropriate limits, use that information to encourage them. Receiving feedback

While it is important to be able to give feedback, it is equally important to be able to receive it. Some people find it difficult to receive feedback, and may shrug off praise or become defensive when given corrective feedback. Here are some hints about receiving feedback: • Listen carefully to what is being said. • Acknowledge that you have heard what is said. • If necessary, ask questions to check your understanding. • Feel free to be proud when given praise. • If you are disappointed by the feedback, respond to the issues raised, not the person giving the feedback. • If corrective feedback is being given, think about what could be done differently in future situations.

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Learning organisations The role of the organisation in the acquisition, generalisation and maintenance of skills and knowledge for staff cannot be underestimated. According to Cole (2001), learning organisations are workplaces where there is a culture of learning built into everyday practice. The learning culture is based on reciprocal learning across all divisions of staff, using both formal and informal methods of teaching and learning for mutual personal and organisational benefit. More specifically, Cole presents the following four characteristics as major components of a learning organisation (p. 409). • They are learning networks with a fluid structure. This helps all staff learn quickly and effectively, and enables individuals – and the entire organisation – to find and use learning sources as required and adapt new learning to a range of situations. • Their employees are able to establish real and virtual (through the Internet) relationships (networks), both internally and externally. These relationships are based not on hierarchy or function, but on expertise, interests and responsibilities. • They have technology systems and structures that help the organisation gather and disseminate learning, understanding and, importantly, feedback on individual and organisational performance, in a timely manner. • They are made up of mobile individuals (flexible, and with a range of experiences) committed to learning and sharing rather than acquiring power. These characteristics clearly place some of the responsibility for fostering such an environment with organisational structures and policies. As individuals we can promote the development of a workplace learning culture by reflecting on our practice and collaboratively dealing with change using new approaches and strategies. As the four key characteristics of a learning organisation suggest, supervisors, managers and staff share some responsibility for their individual learning. Cole suggests consideration of the following points to further develop yourself to ‘create and participate in a learning culture’ (p. 413). Read the list and consider those points that you practice well and those that you wish to further develop. Think about how you could go about further developing your learning responsibilities in your workplace.

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• Accept that your initial learning or foundation training will not see you through the rest of your life. • Appreciate that learning is a never-ending investment. • Accept that skills depreciate and need to be upgraded and replaced. • Gain broad experience, both technically and by working in other teams and in unfamiliar contexts. • Develop personal qualities that help you work effectively with others. • If you specialise, be prepared to leave it behind. • Consider options beyond working for a single organisation at any one time. • Adopt best practices and continually try to improve on them. • Encourage information sharing among staff.

Evaluation of learning and development Evaluation is an activity that occurs both during and after staff learning and development activities. Earlier, we suggested that training should result in behaviour changes in staff that in turn result in positive outcomes for service users. As staff behaviour change is unlikely unless there are changes in attitudes and improvements in knowledge and skills (Kirkpatrick, 1998), it is important to evaluate the effectiveness of training and development. When you attend a training session, workshop or short course you may be asked to complete a feedback sheet that asks questions such as: ‘Did you find the training useful?’ or ‘Were you satisfied with the training?’ Such an evaluation is described by Kirkpatrick as a level one evaluation, where the participants’ reaction to the training is sought, and what is measured is usually participant satisfaction. While a positive reaction is important in motivating people to learn, it is not the only thing that should be evaluated. Evaluation should also measure: • the acquisition of knowledge • the ability to apply this knowledge • the extent of workplace behaviour change • the outcomes for service users.

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The learner’s ability to apply what they have learned can be measured through providing written or videotaped scenarios and asking them to apply the new knowledge to solving a problem, or getting them to demonstrate it in a practice situation. This type of evaluation tells you whether the staff member has acquired skills that can be used in their workplace. Another type of evaluation examines workplace behaviour change to determine whether the learner is putting the skills or knowledge into practice. This can be measured through such means as: • direct observation of the staff member • indirect measures such as checklists • incident debriefing sessions where the staff member explains how they responded to situations and their reasons for this. Increased staff knowledge and skills should result in positive outcomes that are consistent with the mission and objectives of the organisation. In the disability sector, critical outcomes are often those that are related to the service user, such as: • increased satisfaction with the supports being provided • higher levels of participation in community-based activities • increased health and well-being • decreases in frequency or severity of challenging behaviours. Other outcomes are related to the administration of the organisation. These include such outcomes as: • a reduction in WorkCover claims • the writing of more accurate file notes • adherence to a budget.

Conclusion People with disabilities have a right to expect and receive high quality support from skilled and knowledgeable staff. Disability service management and staff learning and development go hand in hand; staff need to have clear roles and performance standards, while

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supervisors and managers need to monitor performance and support good practices. Through monitoring and supervision, organisations can identify staff learning and development needs and plan for staff training. On-the-job training by way of oral instruction and modelling are insufficient on their own to change the behaviour of learners in the workplace. Equal attention needs to be paid to skill generalisation and strategies to support ongoing implementation. Likewise, the traditional practice of sending staff out of the office for training courses and expecting behaviour change in the workplace has not only been recognised as ineffective but is fast becoming outdated (Certo, 2003; Cole, 2001). In addition, the value of investing in staff learning and development is increasingly being recognised, because much of an organisation’s success depends on staff and their relationships with service users, other services and the general public. Staff learning and development is also fundamental to the ability of the organisation to remain competitive and productive (Cole, 2001). Planning for learning and development is an important element of any successful learning experience because the instructor selects teaching activities that will facilitate learner goal attainment. However, regardless of how well the learning experience has been planned, implemented and evaluated, the place where the new learning is to be applied – the workplace – must provide an environment that promotes the application and ongoing use of learnt skills to allow for generalisation, if learning is to be considered successful and useful. Such a workplace will provide ongoing supervision, feedback and encouragement to ensure the maintenance and generalisation of workplace skills and the achievement of the organisation’s goals.

Learning activities 1

Find the performance standards applying to your role that have been developed by your organisation. Select one that relates to the efficiency of the organisation and one that relates to the values of the organisation. (a) Analyse each of the two standards by the following criteria: • What is the source of the standard – that is, is it individually based, administrative or externally imposed?

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• Does the standard reflect the organisation’s priorities? • Is the standard realistic and achievable given the resource capabilities of the organisation and staff? • Is the standard defined operationally – that is, does it identify what, when, who, and how? (b) Identify and discuss the means for ongoing verification that each of these standards is being achieved by both the organisation and individual staff members. 2

Refer back to the information in chapter 5 on the development of individual plans for people with disabilities. (a) Identify and develop one outcome performance standard and one process performance standard for staff involved in developing individual plans. Your performance standards should contain the elements described by La Vigna et al. (1994): • Specify what you want staff to do or the responsibility you would like them to perform in observable terms. • Specify when you want the action carried out. • Specify who has the responsibility for carrying out the action. • Specify how you will know the action has been carried out. (b) Now imagine that you need to teach someone else in your organisation a small skill required for the achievement of the performance standard (such as writing individual plan objectives), and develop a learning objective for this skill. Refer to the section in chapter 6 that showed you how to write objectives for individual plans if you need to. Here is a format to help you; • who (a specific staff member or role) • will do what (the skill) • how well (the standard) • when (under what circumstances). Now put this into a sentence.

3

Practice giving brief instructions in the workplace by thinking of a situation where you could help a colleague to improve their

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performance and planning a brief oral instruction. Use the following as a guide: • What would you tell the person about the reason for the principle or strategy? • How would you check the person’s current level of understanding? • What explanation would you use for the principle or strategy? • How would you check the person’s understanding? • How would you approach a discussion about the procedure for implementation? 4

Using a learning need from your own workplace, or the skill you identified in activity 2, develop a plan for supporting a staff member in developing the skills needed to meet the needs of the organisation and the service users. Use the framework given in the example below to structure your own plan. Example: Keeping client files • Learning objective Given a written list of all materials to be included in a client file, the staff member will set up a new file so that all of the relevant documents are present and in the correct order. • Instruction Discuss the importance of keeping accurate and up-to-date records in the client files. Provide a list of documents to be kept in the client files and explain each of them to the staff member. • Role play Give the staff member a client scenario and ask them to tell you what they would put in the file and in which order. • Modelling Show the staff member a client file that has already been set up to demonstrate the sequence of documents. When a new client file is required to be developed, the supervisor will ask the staff member to set up the file and give feedback on their performance. • Evaluation – application of principles: provide staff with the client scenario and identify the documents and order in which they are to be placed in the file

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behaviour change: when a staff member has set up a new client file, ask them to show you how they did it

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social validation: ask the staff member to describe how the process of setting up the files is relevant and effective, and what could be done to improve relevance and effectiveness; ask the staff member to describe the extent to which they found the instruction and support useful

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participation: check a random sample of client files in the six months following the instruction to ensure that the requirements are being met.

Remember to plan for the provision of feedback at all stages in learning and development activities. 5

Think of three occasions when you were given effective feedback. What was it about the feedback that made it effective? (For example, you could see that the information was useful to you, or the feedback was given by someone you trusted.) Compare your list with the conditions for effective feedback listed on page 347. To what extent does it reflect these conditions? What is different?

References Ager, A. & O’May. F. (2001). Issues in the definition and implementation of ‘best practice’ for staff delivery of interventions for challenging behaviour. Journal of Intellectual & Developmental Disability, 26, 243–56. Certo, S. C. (2003). Supervision: Concepts and skill building (4th edn). New York: McGrawHill Irwin. Coens, T. & Jenkins, M. (2000). Abolishing performance appraisals: Why they backfire and what to do instead. San Francisco: Berrett-Koehler. Cole, K. (2001). Supervision: The theory and practice of first-line management (2nd edn). Sydney: Prentice Hall. Cullen, C. (1988). A review of staff training: The Emperor’s old clothes. Irish Journal of Psychology, 9, 309–28. Hatton, C., Rivers, M., Mason, H., Mason, L., Kiernan, C., Emerson, E. et al. (1999). Staff stressors and staff outcomes in services for adults with intellectual disabilities: The staff stressor questionnaire. Research in Developmental Disabilities, 20, 269–85. Jahr, E. (1998). Current issues in staff training. Research in Developmental Disabilities, 19, 73–87. Kirkpatrick, D. (1998). Evaluating training programs: The four levels (2nd edn). San Francisco: Berrett-Koehler. Kroehnert, G. (2000). Basic training for trainers: A handbook for new trainers (3rd edn). Sydney: McGraw-Hill. La Vigna, G., Willis, T., Shaull, J., Abedi, M. & Sweitzer, M. (1994). The periodic service review: A total quality assurance system for human services and education. Baltimore: Paul H. Brookes.

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Locke, E. A. & Latham, G. P. (1990). Work motivation and satisfaction: Light at the end of the tunnel. Psychological Science, 1, 240–6. McNamara, C. (2002). Nuts and bolts guide to leadership and supervision in the not for profit sector. Minneapolis: Authenticity Consulting. Non-Government Disability Training Unit (1998). Developing an agency training plan: How to guide. Melbourne: Non-Government Disability Training Unit. O’Brien, J. (1989). What’s worth working for? Leadership for better quality human services. Lithonia, GA: Responsive Systems Associates. Richman, G. S., Riordan, M. R., Reiss, M. L., Pyles, D. A. & Bailey, J. S. (1988). The effects of self-monitoring and supervisor feedback on staff performance in a residential setting. Journal of Applied Behavior Analysis, 21, 401–9. Salas, E. & Cannon-Bowers, J. (2001). The science of training: A decade of progress. Annual Review of Psychology, 52, 471–97. Schalock, R. L. (1999). A quest for quality: Achieving organizational outputs and personal outcomes. In J. F. Gardner and S. Nudler (Eds), Quality performance in human services: Leadership, values, and vision (pp. 55–80). Baltimore: Paul H. Brookes. Taylor, W. (2000) Client needs as determinants of agency training plans: The Milparinka model. Melbourne: Milparinka ATU. Williams, R. (1998). Performance management: Perspectives on employee performance. London: International Thomson Business Press. Ziarnik, J. & Bernstein, G. (1982). A critical examination of the effect of inservice training on staff performance. Mental Retardation, 20, 109–14.

14

Communication and collaboration Greg Robinson

Learning objectives After reading this chapter and completing the activities you should have: • an awareness of the complexity of human communication, and likely barriers to communication • a knowledge of listening skills and non-verbal communication • an awareness of the procedures of conflict resolution, and likely barriers to managing conflict • an understanding of the collaborative process, its potential advantages and its potential disadvantages.

Introduction Collaboration involves stakeholders with different expertise, knowledge or experience working together as a team. Effective communication and collaboration is becoming increasingly important in an environment where professionals are expected to work together and also work with people with a disability and their families. For collaboration to be effective, people need to be aware of the likely barriers to communication. They also need to be skilled at effective listening, and understand how to resolve conflict. People who are aware of barriers to communication, listen well and acknowledge conflict are more likely to be able to develop effective

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collaborative relationships. Collaboration is essential for meeting the support needs of people with a disability. We depend on others – including the person with a disability – to assist in this support process, and if we’re able to effectively work with others our support is more likely to be successful. To be successful in collaboration a person needs to have a good understanding of themselves, their personal motivations and how they are likely to react in difficult personal and professional situations. Someone who does not effectively communicate with themselves will find it difficult to effectively communicate with other people. Shea and Bauer (1991) claim that competent professionals have taken time to examine why they work with people who have disabilities, whether their reasons involve self-interest or a need to help others. This awareness can lead to self-acceptance, and more understanding of the people they support and their families. The self-analysis required to develop this understanding is not always easy; but the evidence-based information presented in this chapter, and the experience of workers in the field and of service users, may help you to develop this understanding. If a person understands themselves and is able to acknowledge their attitudes, fears and prejudices, there are likely to be fewer barriers to communication, and the messages they send are likely to be more accurate representations of who they are and what they think.

Barriers to communication and collaboration People interpret what is being communicated in the context of their own personal experiences and background. We all have our own unique experiences, which are associated with various words, sounds, smells, situations and so on. We use words that have a certain meaning to us, but may not evoke the same response in the person with whom we are trying to communicate. Using the word ‘boy’, for example, when addressing an African American is likely to bring a negative response, and the word ‘gay’ means something different now than it did forty years ago. The word ‘joint’ has different meanings in different situations. You need to think about how a person might have made meaning from the message, and how they might have felt about that meaning (Lambie, 2000). The more we get to know a person, the more likely it is that we will understand their

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unique attitudes and values, and use words that will have the same meaning for them as for us. The highly personal way in which any communication is interpreted means there is a high risk of some miscommunication in collaboration activities with people you do not know. When a person’s background is not fully known, or their attitude to the collaboration situation is not clear, there is a risk that attitudes or opinions put forward with the best intentions will be misinterpreted. For example, consider a parent who has been asked to talk to a carer about their adult child. If the parent has experienced significant problems with caring agencies over the years, they may come to the meeting with a sense of anger, fear or reluctance, and as a result interpret anything that is said as unhelpful. This is likely to lead to a defensive reaction on their part, which the carer may interpret as denial, or a lack of interest, when in fact the parent’s defensive reaction has to do with their own uncomfortable previous experiences with agencies and their staff. Professional barriers The high risk nature of initial meetings between parents and professionals, and between fellow professionals, has been the subject of much discussion about likely barriers to communication. The barriers identified include: • territorial issues relating to people’s roles • practical barriers such as –

lack of time for collaboration due to large workloads

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competing responsibilities

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problems scheduling meetings that all involved parties can attend

• attitudinal barriers such as: –

unrealistic expectations about the results of collaboration (for example, expecting immediate and flawless results)

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fear of change

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resistance to new ideas.

Cook and Lennox (2000) surveyed barriers experienced by 289 randomly selected general practice registrars across Australia in provid-

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ing health care to people with an intellectual disability. Many barriers were identified, including difficulties in communication, especially with other health professionals, leading to difficulties in assessment and history-taking. Time was also considered a barrier, limiting the quality of care provided, as was a lack of awareness of available resources. The authors emphasised the need for more doctor–caregiver communication. Krogh (1998) identified a number of potential barriers to community partnerships, including lack of recognition of the expertise of people with a disability and a resistance on the part of service providers to sharing power with service receivers, as discussed in chapter 5. Assumptions were made by professionals about the limited capacity of people with a disability, with expectations from charity providers of a grateful stance and passive role from such people. Krogh found that conflicts of values usually result in the dominant (non-disabled) stakeholder remaining in control. Krogh claimed that for partnerships to effectively focus on personal development and personal transformation, there was a need to openly recognise and address power issues, and to redistribute power more equitably among stakeholder groups. The issues identified by Krogh were also raised by Clare and Cox (2003) when discussing collaboration with people who have cognitive impairments and communication difficulties. There was concern about the dominance of a disease-based model of support that focuses on pathology and carries an assumption that the expert knows best. Some problems arising from an entirely medically-oriented approach to support were discussed in chapter 1. Clare and Cox also raise the issues of: • professionals making judgments about what will be ‘acceptable’ without consulting the person concerned, along with well intentioned advocacy that makes assumptions about the person’s best interests • consultation being used merely to comply with policy, while planners remain firmly in control. Personal barriers In addition to the professional barriers identified above, a number of more personal barriers have also been identified and discussed in

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the literature (Blamires, Robertson & Blamires, 1997; Kampwirth, 2003; Pugach, Johnson & Lilly, 1995). These barriers are often called ‘communication spoilers’, as they are high risk responses that may diminish self-esteem, block conversation, trigger defensiveness, increase emotional distance and hinder problem solving. While most of these barriers seem fairly self-evident, it is surprising how often people use them, despite knowing that they may be damaging. The barriers listed below may not always be negative, but they are potentially high risk: • criticising or put-downs: ‘You brought it on yourself.’ ‘You are always complaining.’ • diagnosing – analysing why a person is behaving in a certain way: ‘You like power.’ ‘Just because you went to university, you think you are better than me.’ • ordering – using power: ‘Don’t ask why, just do it.’ ‘I want to see you in my office.’ • threatening to control people’s actions, which can produce fear, resentment, or hostility: ‘You’ll do it or else …’ ‘Stop that right now or we will not go on the shopping trip.’ • moralising – telling another person what they should do: ‘You should be more responsible.’ ‘You ought to face the facts.’ • interruptions – just as the person is getting to the heart of their concern, the flow is broken by questions or comments. • excessive questioning or interrogation, which may put the person on the defensive: ‘Why did it take so long?’ ‘What are you doing now?’ • advising – giving the other person a solution to their problems when what they want is to be heard: ‘If I were you, I’d tell him off.’ ‘Why don’t you do it this way?’ • using logical argument – appealing to facts or logic, usually without consideration of the emotional variables involved: ‘There is nothing to be upset about.’ ‘It’s all quite reasonable.’ • praising to manipulate: ‘You’re so good at report writing; will you do this one for me?’

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• false assurances – to relieve the stress, some people may make the issue sound quite simple, and claim that it may resolve itself or quickly improve. The development of trust One aim of any initial meeting should be to lay the foundations of a trusting relationship as a basis for further meetings (Lake & Billingsley, 2000). Such a relationship would allow all points of view to be fully expressed, explained and appreciated. One of the primary ways in which people will be able to develop a safe, trusting and secure atmosphere at meetings is through a display of warmth. This atmosphere will also be facilitated if people are comfortable with themselves and they are willing to enter the relationship without a facade. People in meetings need to demonstrate a willingness to make themselves ‘human’ and to suggest that they may not have all the answers. Identified below are some of the suggestions outlined by Simpson (1996) for the development of a trusting atmosphere. Do: • be accepting of people you work with • be sincere • listen • be aware of body language • use language people can understand • demonstrate warmth. Don’t: • attempt to be a sage who has all answers • be overly critical, or blame • argue • patronise or make moral judgments.

Non-verbal listening and communication Listening skills One way to deal with the high risk nature of collaboration (especially for initial meetings) is to emphasise the importance of effective

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listening. Effective listening means that likely misinterpretations may be identified and corrected before they cause damage. We need to be able to effectively listen (and effectively attend to body language, discussed on page 362) to make sure we really understand what is being communicated. Often people are more concerned to put forward their own opinion than to really concentrate on what the other person has to say. In particular, professional people involved in consultation may be far more adept at talking than at listening; and if there is a quiet period during the conference, the professional is likely to step in and talk. True listening requires diligence and practice – the listening process rarely occurs spontaneously. Listening can be a difficult skill that requires discipline and concentration to master. Parents, in particular, have observed that professionals routinely fail to meet their listening needs. The following listening traits of some professionals have been identified (Simpson, 1996): • Some professionals listen with one ear, waiting for the person to finish speaking so that they can make their point or explain the way it ‘really’ is. • Some professionals merely tolerate other people talking without really listening. • Some professionals use the process of reducing and analysing the content of the message without really listening to what the person is saying. • Some professionals seem preoccupied while other people are talking; they obviously have something else on their minds. • Some professionals seem to go through the mechanics of listening, but their responses make it apparent that they do not understand. Personal involvement in listening

Listening is more than just attending to a dialogue. It is the ability to get behind the words, to see through them and to find the person being revealed. It is making sure that a substantial amount of what is being said has a shared meaning, and that the environmental factors likely to influence the nature of the communication are understood. Figure 14.1 illustrates shared meaning as the overlap between the meaning intended and how it is interpreted.

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FIGURE 14.1 SHARED MEANING

My intended meaning

Shared meaning

Your interpreted meaning

A few important principles about listening are: • Meaning exists inside people’s minds, and words might not effectively convey that meaning. • When people perceive ‘a message’, they perceive all the cues involved in the encounter. Posture, gesture, facial expression, tone of voice, rate of speech and the environment are all part of the message conveyed. The total picture can be ‘worth a thousand words’. • When people make sense of a message, they try to do it in ways that will allow them to remain comfortable with their own attitudes, values and feelings. • The question is ‘what will the audience do with this message?’ Feedback is needed from the audience to answer this question. Attending skills Attending skills can be used to deliberately show interest and involvement. It is important to recognise that we all have some days or situations when we do not really want to be involved because we are tired or ill, or other important things are on our mind. On days such as this, we may need to be more conscious of ‘working’ at attending skills to make sure that we convey an impression of commitment to the other people involved. We do not want the person to be put off and not continue with the collaboration process just because in one critical interaction we did not have the energy or emotional resources to be fully involved. Attending skills include a posture of involvement, such as facing the speaker squarely, leaning forward and nodding, being seated at their level and communicating at a comfortable distance (usually

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one to two metres). You also need to be relaxed, without being totally still (which may given an impression of aloofness). It is also important to have eye contact, which communicates interest. Following skills Like attending skills, following skills can be deliberately used to show interest and involvement. They should mainly be used in a positive fashion to encourage communication and to ensure that you are getting ‘behind the words’ to fully understand the person or situation being revealed. Following skills can include ‘door openers’ at the start of a meeting, such as small talk about the weather or a common interest, but may also include an invitation to talk. You may also need to use minimal encouragers, which are a brief reminder that the listener is in tune with the speaker (‘I see’, ‘yes’, ‘sure’). Attentive silence is a useful following skill, as most ‘listeners’ talk too much and don’t give the speaker time to pause and reflect. It is also important not to question too much, asking only one question at a time and giving a person time to respond. Use open questions, which allow the speaker to reflect (‘What is your opinion?’) rather than closed questions, which only require a ‘yes’ or ‘no’ response (‘Do you agree?’). Reflective listening Reflective listening is used to check that the message is understood. Attending skills are designed to make sure the person feels comfortable about communicating. Following skills are designed to give the speaker every opportunity to put forward their point of view. The purpose of reflective listening is to provide a checking device, to make sure the interpretation of the message was correct. It is very easy to miscommunicate, and it is important to clarify any communication that seems unclear (Lambie, 2000). The procedure involves reflecting back to the other person what you think they are saying, which then allows them to confirm or correct the interpretation. Reflective responses are very necessary as we tend to perceive attitudes and actions through our own filter of emotions and experiences. Our own set of expectations may colour what we see. McKay (1995) emphasises that listeners generally interpret messages in ways that make them feel comfortable or secure, and pay most atten-

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tion to messages that are relevant to their own circumstances and point of view. He also emphasises that the message will be interpreted in light of how, when, where and by whom it is said. It is important that the reflecting genuinely relates to the person’s communication, and does not just give them back their message. If the only response the speaker receives is one of directly reflecting back what they said, it could be frustrating or unnerving, especially if the speaker was expressing a deep concern or conviction. A number of forms of reflective listening have been identified, and are now discussed. Paraphrasing

This is a short response to the speaker which identifies the main features of what has been said in the listener’s own words. Use it when you think you understand what a person has said or how they feel, but are not absolutely sure. It can also be used when you need a better understanding of the message before you can respond appropriately. Reflecting feelings

This technique is designed to make sure that subtle signs of emotion are not missed. Too often people make the mistake of focusing on the content of a message and overlooking the depth of emotion attached to it. The difficulty in identifying feelings is that people often have very different styles for communicating them, and it may take some time to become aware of a particular person’s style. Some people give very little display of emotion in connection with things they feel intensely about. Others are highly expressive and emotional about things they do not feel intensely about. It may take some time to become attuned to the communication style of a particular person. Summative reflection

A summative reflection is a brief restatement of the main themes and feelings the speaker expressed over a longer period of conversation than would be covered by other reflective skills. A summation helps the speaker gain an integrated picture of what the listener thinks has been said. This kind of summary, however, may be confronting, and the listener should carefully judge whether the speaker is emotionally prepared to handle it. A summary may also be useful at the beginning of a new session when ongoing meetings are occurring.

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Non-verbal communication A critical aspect of communication involves the non-verbal cues a person gives, particularly body language cues. We may not always process every word spoken, but we are very conscious of the situation or context of the communication, the tone of voice being used and the accompanying gestures. A total package of meaning may include the aspects of non-verbal communication shown in figure 14.2. FIGURE 14.2 NON-VERBAL COMMUNICATION Posture: the way we sit, stand, walk, etc

Physical surrounds: public, private

The social setting: home, work, car, family, etc

The distance we stand from others Non-verbal communication

Tone of voice, rate of speech

Physical gestures

Dress, hair and general physical appearance

Facial expression, eye contact

Non-verbal cues reveal not only feelings, but how a person is coping with them. We learn to control body language, just as we often hide feelings. However, there is usually some ‘leakage’ of masked feelings, and close observation of body language is likely to reveal this. Cooley and Triemer (2002) emphasise the importance of nonverbal behaviours for social communication and interpersonal success. They found that less accurate interpretation of non-verbal cues by children was associated with a higher reporting of aggressive behaviour, which they suggested could be the result of increased frustration due to mistakes in interpreting such cues. Two of the more important aspects of non-verbal communication are described and briefly discussed below.

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Facial expression, in particular, is used a great deal to communicate emotions. Grinspan, Hemphill and Nowicki (2003) claim that the ability to read emotion in facial expression is one of the most important non-verbal skills, and is related to self-esteem, social adjustment, social status and academic achievement. It has been found that some children with learning disabilities have difficulty processing the fine visual detail that is needed to interpret emotion in facial expressions (Whiting & Robinson, 2001). This may be a significant factor in their (often) poor social skills. If people cannot effectively identify details of expression that differentiate surprise and nervousness, or anger and sadness, their ability to interact effectively in social situations may be severely reduced. The eyes are another very important source of non-verbal cues. Pease (1986) suggests that in given light conditions, the pupils will dilate or contract as the person’s attitude and mood changes from positive to negative and vice versa. When someone becomes excited, their pupils can enlarge. Conversely, an angry, negative mood causes the pupils to contract to what may be called ‘beady little eyes’. Eye gaze is also an important indicator. When a person is being dishonest or holding back information, their eyes meet ours less frequently. However, like most body language and gestures, the length of time that one person gazes at another is culturally determined. Southern Europeans tend to gaze to a degree that may be found offensive in other cultures; the Japanese are more likely to gaze at the neck than the face. You need to be aware that eye gaze is an important factor in communicating, and that relatively small variations in gaze can be critical.

Successful communication in meetings Much of what has been discussed to this point is directed at effective communication and collaboration with others on a day-to-day basis. However, you also need to use these skills when you are involved in meetings. Avoiding barriers to communication, listening effectively and reflecting on what is being communicated are all vital aspects of successful meetings. It is also important to be clear about the purpose of the meeting, and for participants to be informed about the purpose well in

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advance. Some of the more important purposes of meetings are outlined below: • to learn more about people’s opinions • to identify areas of tension and disagreement • to identify ways in which people can help • to negotiate jointly decisions about goals. It is also critical to establish trust at the start of the meeting by making people feel accepted and supported. This can be a particular challenge when a person is reluctant to address a problem, or does not particularly want assistance. You must be sincere in wanting to listen to the person, and make them feel that the meeting is worth their time. Shea & Bauer (1991) list five deterrents to effective meetings: • fatigue Meetings can be hard work, especially if feelings run high. People can tire and become distracted during a meeting, particularly if it takes place after a day’s work. • strong feelings Strong emotions can prevent people from clearly perceiving reality. • words The use of emotionally loaded words and phrases can inhibit communication. A word or phrase used inappropriately may anger people. • professional talk A professional who talks continuously is not listening. People can only communicate if allowed to do so. Professionals should allow plenty of time for listening. • the environment A distracting or uncomfortable meeting place limits the possibilities for a productive exchange. Locations should be private and comfortable. Try to consider how the other person feels. A meeting can rarely achieve much in relation to solving problems without discussion of attitudes and feelings as well as facts. However, any discussion of feelings and relationships must be handled tactfully. Parents, for example, may have a distorted perception of their adult child, and it is important to try to establish their view before rushing in. A professional may, of course, for similar reasons, have an equally distorted view.

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Remember, too, that parents and other interested people often have considerable expertise in the area, and do not assume otherwise without finding out. Do: • be alert to differences in cultural background – do not talk down to people • be tactful – sometimes people are defensive and over-critical of what are intended as innocent comments or questions • remember that typically people want to know the facts (although they might not always want to admit them) – glossing over the facts does not help people develop insight • try to put yourself in the person’s position to gain an appreciation of how they feel about what is being discussed • listen well and carefully – try to avoid taking notes, except perhaps to jot down key points of agreement to help you summarise at the end • allow the person opportunity for decision-making – try to focus on one or two actions for follow-up rather than leave the person with too many suggestions. Don’t: • deal in generalities – suggestions should be specific and to the point • lecture – listen closely and sympathetically • cover too many topics in one interview • be judgmental about things that people say. If at all possible, leave the person with both positive and optimistic comments at the close of the meeting, and conclude by summarising what has been agreed. It might be useful to write a summary, with each person in the meeting keeping a copy for follow-up purposes. Try to make follow-up action specific, with agreement on: • what each person will do to help • when and how often it will be done • what change of behaviour, attitude or work skills will be looked for as a guide at the next meeting

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• who will be responsible for arranging the next meeting. Remember, keep agreed actions and observations simple so that they are likely to be carried out. Keep in touch, and change the plan if it needs change so that any development in the right direction can be kept up.

Conflict and conflict resolution Much of what has been discussed in this chapter also applies to the resolution of conflict, which is more likely to be successful if: • likely barriers to communication are understood • there is awareness of the need for effective listening skills • there is a good understanding and ‘reading’ of body language • an effective meeting and planning style has been developed. Identifying the cause of a conflict is usually the starting point for a solution, as the problem has to be defined before it can be solved. Bodine and Crawford (2000) suggest there are two main reasons for conflict: • limited resources, such as time, space, money or equipment • different values, including beliefs, priorities and principles. According to Bodine and Crawford, conflicts involving values are more difficult to resolve, although they emphasise that conflicts about resources can involve needs, and if the solution only deals with the resources and not the needs, the conflict may return. Providing someone with an office, for example, may not only deal with a resource problem, but also address the person’s need to feel acknowledged and respected. Bodine and Crawford also claim that when values are in conflict, a dispute may be perceived as a personal attack in which the person’s sense of self is threatened, making them more defensive and more resistant to change. For example, parents may interpret a difference in opinion with a carer on how to cope with their adult child as an attack on their parenting skills. In such situations there is need for mutual recognition of different views. Bodine and Crawford outline some principles that are fundamental to conflict resolution: • Conflict exists; it is not going to go away, so we need to deal with it effectively.

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• Conflict is a natural human state; it can be an important source of learning and an opportunity for growth. • Learning the process of conflict resolution enables people to deal with conflicts effectively and constructively. • Everyone can learn the skills required to resolve conflicts. It is also important to note that for conflict resolution to be successful, both parties must want a resolution of the conflict, and both must, usually, be prepared to compromise. Here is a simple description of the conflict resolution process: • The people involved sit on the same side of the table. • They put the problem on the table. • Instead of attacking each other, they attack the problem. Melamed and Reiman (2000) make the important point that professionals and others are likely to have different perceptions and beliefs about any situation; what is ‘true’ for one may not be ‘true’ for another. Melamed and Reiman’s procedures for collaboration and conflict resolution are as follows: • Consider the common ground. There are likely to be overlapping interests, with people dependent on one another. There are also likely to be some easy points of agreement to use as a foundation for further discussion. • Deal with emotional and relational issues in ways that support initial respect and safety. It is important to separate such issues, which may focus on the past. Concentrate on problem-solving aimed at the future. • It may be necessary to decide on a decision-making standard, such as a large majority or some form of consensus. • Use a problem-solving structure which recognises the essence of the concern. State the issue for discussion in problem-solving terms (‘How can we best …?’) • Set up ground rules for discussion, such as: –

give everyone full and equal opportunity to speak on issues

–

ask questions for clarification

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–

speak only for oneself

–

speak up if something is not working

–

avoid establishing inflexible positions.

• Address issues using a logical progression: –

identifying interests and intentions

–

developing options (brainstorming)

–

selecting arrangements and priorities

–

integrating and finalising (‘Have we reached the best acceptable agreement?’)

Be careful not to begin exploring alternatives to solve the problem too soon. The initial priority is to attend to and understand emotion, particularly anger. If the process moves beyond this emotion too quickly, the person may not be ready to look rationally at alternatives. Occasionally you may have to back off and limit your response to reflecting the person’s feelings until they are ready to move on to exploring alternatives. There may be times when the person cannot generate plausible ideas due to lack of experience. In this case, offer suggestions in a tentative form: ‘Have you considered what might happen if you …?’ Keep suggestions to a minimum, so that the person is not encouraged to overly depend on other people for ideas. An example of how conflict may be resolved through the collaboration of many support staff appears in box 14.1. Handling criticism Giving and receiving criticism is not easy – it is not part of the way that people are brought up to talk to each other. However, unless frank discussion between the people involved occurs, a truly collaborative partnership may not develop. If there is no acknowledgment of differing ideas or opportunity to discuss them, people may start to think there is no point in talking. Disagreement must be made acceptable so that discussions become worthwhile and there can be more sharing of ideas. If it is possible to get beyond seeing criticism as purely personal, it can help a person to understand the other point of view. Both views, after all, may be valid.

Communication and collaboration

BOX 14.1 • JACK’S STORY Jack is a 36-year-old with a mild intellectual disability and a history of mental health issues, who was referred to an intensive intervention team that provides an interdisciplinary assessment and intervention service. He lives in a supported residential facility, but previously lived in a house that he shared with another resident with some tenancy support. He was a valuable and productive employee at a sheltered workshop and participated in a range of social activities. Jack’s behaviour began deteriorating several years before his referral to the intensive intervention team, when he became infatuated with a fellow employee. He made repeated telephone calls, sent her letters and followed her. After several serious warnings, he sought help from various government departments, hospitals, police, churches, counsellors, solicitors and men’s groups. Jack would ask to be either reconciled with the young woman or ‘locked up’. The deterioration in his behaviour escalated, eventually resulting in a pattern of repeated hospitalisation, reduced levels of activity and increased social isolation. He reached the point where he was refusing to leave his room except to persistently seek medication, despite significant efforts by a range of professionals and agencies. Jack’s behaviour led to frustration for service providers and tensions between mental health services, disability services and nongovernment organisations. The intensive intervention team’s assessment was that Jack’s behaviours arose from strategies he had developed to deal with uncomfortable feelings best characterised as anxiety. Jack would become anxious and begin to ruminate, lapsing into familiar patterns of thought. His behaviours tended to be self-defeating, in that they did not alleviate his anxiety and contributed to further difficulties and escalation of anxiety. Psychiatric intervention had some success, but benefits were not maintained due to the absence of relapse prevention strategies and of sustainable changes in Jack’s social environment. The intensive intervention team sought to ensure that all staff supporting Jack shared a basic understanding of his mental health issues. A social worker with expertise in the area of dual disability ran a tailored training session. In another session, support staff were taken through a facilitated process that resulted in the identification and documentation of indicators signifying deterioration in Jack’s mental health. This document became the basis for the development of a protocol that identified the role of each agency and health professional involved in response to objective descriptions of Jack’s behaviour. The document produced became the ‘response protocol’, or ‘relapse prevention plan’. The treating psychiatrist’s involvement in the development of the protocol gave Jack a powerful advocate from the mental

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health system. The psychiatrist negotiated directly with the mental health service’s after hours crisis team (to ensure they understood and accepted their designated role in the response plan). Adapted cognitive behavioural therapy was used to ensure that Jack knew how to appropriately seek assistance and had strategies to manage his mental health issues. Discussions with residential support staff ensured that he had the opportunity and support to practice these strategies. A speech pathologist worked collaboratively with a psychologist to assess Jack’s receptive language abilities to ensure that cognitive behavioural therapy strategies were pitched at a level that Jack could understand. Assessment of his social–sexual knowledge was also undertaken in consultation with the speech pathologist, with relationship education and counselling provided to address the issues identified. Another aspect of the intervention involved increasing Jack’s level of physical activity, social engagement and community participation. A daily routine was instituted whereby Jack was accompanied by a support worker on a neighbourhood walk before breakfast. He was rewarded with achievement certificates for continuing this activity independently. Given the deterioration in his daily living skills and the referring agency’s view that his accommodation arrangements were less than ideal, an occupational therapist assessed his functional skill level and made recommendations about the level of support he would require in the future if accommodation arrangements changed. At the conclusion of the intervention (and at three and six month follow-ups), Jack continued to engage in daily physical activity outside of his place of residence without prompting, and continued to be involved in a range of social activities that he enjoyed. He was more likely to identify the source of his anxiety accurately rather than attributing it to the previous subject of his obsessions. The success of this intervention clearly depended on collaborative work across a range of professionals and agencies, including a psychologist, social worker, speech pathologist, occupational therapist, support workers and psychiatrist. This collaboration involved assessment, intervention and future planning for Jack’s support needs.

(Richard O’Loughlin, Specialist Intervention Support Services, Intellectual Disabilities Services Council)

Handling criticism cannot be learnt from a few instructions; deep feelings are involved. The following suggestions by Stacy (1991) may be useful as a basis for beginning to be comfortable with giving and receiving criticism: • Listen carefully. It is difficult to listen when someone is being critical. We tend to defend ourselves with a counter-attack, or

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immediately blame ourselves, rather than listening fully to what is being said. • Make sure there is clarity about what is being said. Criticism is an opinion; it may not be fact. There can be many different opinions. • Think and breathe before responding – don’t jump to conclusions. The criticism may be about something that is not controllable, such as loss of staff. • Respond honestly to what is being said. If you believe the criticism is true, then, as difficult as it may be, it is important to acknowledge this. • Take the criticism seriously. If it is untrue, disagree, but be brief and specific – avoid argument or numerous justifications. • Show you understand. Find out why the person is feeling dissatisfied, upset or frustrated. • Focus on the facts of the problem rather than getting caught up in the emotion. Ekert (2000) used the following steps to successfully teach the skill of accepting criticism to adults with developmental disabilities: • Keep a straight, upright body posture. • Turn your body toward the person. • Keep eye contact. • Keep a serious face. • Talk with a normal voice. • Respond with head nods. • Listen and ask questions. • If you agree, apologise; if not, explain. • Share ideas for changing. • Express a willingness to work out problems. Managing emotions Emotions can run high in a conflict situation, and they need to be considered before a logical and rational discussion of the issues can take place. It is useful to remember that in times of anger or fear

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there is a decreased blood supply to the brain – when we are under stress, more blood is diverted to the muscles to prepare us for a physical response. As a consequence, we are more equipped to have a fight than to rationally solve a problem. When faced with an angry person, it is important to first communicate respect, and to listen. People are more likely to be calm if they feel that their needs are being heard or their problems understood. Use body language and words to demonstrate that you are listening and giving them full attention. It is also important to avoid denials and accusations such as ‘It’s not my fault, we’re short of staff’, or ‘Why didn’t you tell me earlier?’ There is a need to respond calmly – especially as the person may be angry not at you, but at the organisation. Zeigler-Dendy (2000) emphasises that anger is a feeling that is not right or wrong. It is what a person does with their anger, or how they express it, that is important. Even though someone may make you feel angry, it is possible to choose how to respond to that person in a way that makes things better, or worse. Zeigler-Dendy uses an analogy: anger is like having an elephant in the house. It cannot be ignored, it won’t go away, and you can’t deal with anything else until you have dealt with it. Following is a set of possible steps to employ when faced with anger: • Take a deep breath, or ‘centre’ yourself. • Choose to operate in ‘adult’ mode and as a caring problem-solver and information-seeker. • Use active listening techniques. It is very difficult for someone to remain aggressive if they really feel listened to. • Acknowledge rather than ignore the other person’s feelings. • Offer options. People are often angry because they feel powerless. Offering options – giving them the chance to make a decision, no matter how trivial – may reverse that feeling, and help them get over their anger more quickly. Coping with stress and conflict in community disability services Mitchell and Hastings (2001) surveyed the emotional reactions of staff, and their coping strategies, when confronted with aggressive

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behaviour in adults with disabilities. The study identified three groups of strategies to cope with aggressive, challenging behaviour: • adaptive strategies, such as seeking emotional and social support and planning to overcome the problem • disengagement coping, such as alcohol and drug abuse, behavioural disengagement and mental disengagement • denial. Disengagement coping strategies predicted both emotional exhaustion and less positive feelings of personal accomplishment. Increased burnout was also related to depression and anger as a reaction to challenging behaviour. Shaddock, Hill and van Limbeek (1998) highlight the need for engagement in their finding that there was less burnout in residential workers for people with an intellectual disability who felt they gained support in their job and from their family.

Collaboration Collaboration involves stakeholders working together to identify strategies for addressing mutual needs. Increasingly, professionals are expected to work closely together and thus are more likely than in the past to need collaborative skills. Participatory management approaches, in which staff are actively involved in decision-making, are also now preferred to the strongly directive approaches favoured in previous decades; and increased staff involvement in decision-making has also increased the need for collaborative skills. It is important to emphasise that collaboration first involves the identification and clarification of needs and aspirations, followed by a discussion of the best ways in which these may be met. The main principles on which collaboration is based are as follows (Blue-Banning, Summers, Frankland, Nelson & Beegle, 2004; Bowman, 1999; Coben, Thomas, Sattler & Morsink, 1997; Spedding, 2001): • voluntary involvement • viewing all team members as equals, with participants supported and encouraged

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• acknowledgment of the skills and expertise of all contributors • open communication, with respect for the right of all members to have their own opinions and beliefs on any and all issues • development, in a cooperative manner, of goals everyone is prepared to work towards • shared responsibility for decision-making • shared input and responsibility for the outcome. In her discussion of the need for self-determination for people with disabilities, Bowman (1999) argues that instead of basing decisions on what professionals believe is best, there should be more listening to these people and those who support them. Her method of collaboration, called invitational counselling, uses the acronym SHARE, for: •

Starting responsive listening

•

Hearing – understanding and accepting what is communicated

•

Accepting, or being non-judgmental

•

Responding intentionally and appropriately

•

Enhancing communication through silence and minimising interrogation.

The steps involved in collaboration There have been many descriptions of collaboration and of the steps or stages involved in the collaborative process (Coben et al., 1997; Lambie, 2000; Overton, 2005). The key questions to be asked before embarking on a collaboration are: • Do people agree that there is a need or aspiration that must be addressed? • What are the details of the need or aspiration (factors that created the need or aspiration, and obstacles to a solution)? • What is the desired state? • What range of options is there to effectively address the need or aspiration? A useful outline of the main steps in collaboration appears in table 14.1.

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TABLE 14.1 STEPS INVOLVED IN COLLABORATION Stages 1 Define the problem in terms of needs or aspirations, not solutions: • Participants need to be very clear about genuine needs. • Most people think about problems in terms of conflicting solutions. • There is a need to find out why the person wants their solution and when we see its advantage for them we have their needs. • Watch that people don’t camouflage needs

Communication skills

Listening skills: • Clarifying (open questions) • Attending • Paraphrasing • Summarising

2 Generate a range of possible solutions (brainstorm): • Don’t evaluate. • Don’t clarify. • Expand on each others ideas. • List every idea. • Don’t attach names to ideas. 3 Select solutions that will best meet both parties’ needs and check consequences: • Ask about alternates people favour. • See what choices coincide. • Jointly decide on one or more alternatives. • What is cheap for me to give and valuable for the other person to receive? • Be sure the other person is satisfied. • Try to foresee possible difficulties – consequences: – It is ‘do-able’? – Is it enough? – Is it fair? 4 Plan who will do what, where, and by when: • Specify times people will get together to check how implementation is going. • It is usually desirable to write out the agreement reached. • Empathy 3 Implement the plan: • Complete steps on schedule as an act of good faith. • If people do not complete assigned tasks – use reflective listening. • Identify a review date. 3 At a later date, evaluate how well the solution turned out: • How people feel about the process. • What was liked and disliked. • What can be done better next time.

Attending skills: • Sit squarely • Have an open posture • Acknowledge • Engage using eye communication

Relationship building skills: • Genuineness • Acceptance

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Blue-Banning, Turnbull and Pereira (2000) assessed preliminary reactions of families and professionals to a collaborative planning approach for people with disabilities. Cooperation and an equal partnership appeared to be the most appealing element to parents, as they felt an imbalance of power in their relationships with professionals in a traditional service provision model. They were, however, concerned about the vulnerability associated with such cooperation, with the possibility of rejection of their suggestions and dreams. Professionals in the study were concerned about time commitments. They were already feeling overworked due to multiple tasks and paperwork, and questioned the feasibility of implementing this type of planning process for all the people they worked with. Planning was seen as an add-on to work schedules that were already too full. Menchetti and Garcia (2003) found that using collaborative career-centred planning for developing career choices and employment outcomes for people with disabilities was effective, but there were impediments in the system that created problems. These impediments included: • the lack of a person-centred philosophy, with counselors and coordinators tending to dominate meetings • the seduction of a ‘quick fix’ philosophy that overemphasises the first meeting and pays little attention to follow-up. Holburn and Vietze (1999) feel that person-centred collaborative planning may be so contrary to the values and goals of conventional residential systems that agencies may be tempted to avoid the inevitable conflicts that arise when they adopt an approach that challenges their mission. Employees need to participate in a collaborative process, rather than attending the usual in-service sessions and receiving official policy statements. Holburn and Vietze also claim that many residential environments for people with developmental disabilities are heavily rule-governed, with continuous cycles of meetings and paperwork that do not allow time for the added responsibilities and tasks of collaborative planning. Resistance to collaboration Attempts at collaboration often occur when people have been unable to solve a problem. They may be frustrated and put the blame or responsibility on external factors, such as the system, to avoid

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self-analysis that they fear will suggest they are part of the problem. Aldinger, Warger and Eavy (1991) have listed common ways in which people resist responsibility: • time stalling The person never seems to have time to meet, and misses or cancels meetings. The person may also never seem to have time to implement agreed-upon activities. • questioning methods or techniques The person has extensive questions about strategies suggested, and may also claim to be ‘confused’ about a strategy, possibly using confusion and questioning to delay action. • agreeing to everything, then taking no action The person may be resisting in a passive way by not even voicing their objections. Agreement is more likely to be genuine or positive when some reservations are expressed, suggesting that the person is seriously considering how a particular suggestion might work. • demanding solutions The person may keep asking for solutions to avoid any analysis of the factors surrounding the problem. • blaming others Blaming others for the problem may set the person apart from the problem. • making personal attacks People may be accused of offering suggestions that are impractical and unrealistic. The attack could also take the form of threatening repercussions from outside authorities (‘The manager will never allow that kind of thing here’). Dealing with resistance to collaboration It is important to be sensitive to indications of resistance, especially in body language, which may contradict what the person is saying. The person may feel obliged to be polite, but they may not be happy with the suggestions, and this may show in non-verbal ways. It is also important to pay attention to your own feelings and reactions. If you are feeling angry, frustrated or impatient it is obvious that resistance is occurring. Aldinger et al. (1991) suggest the following strategies to cope with resistance: • Try to develop a positive mutual regard. Share relevant experiences. • Try to understand the person’s unique view of the situation through the use of effective listening.

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BOX 14.2

• STUART’S STORY

Stuart is a ten-year-old boy who lives with his foster family. He has a mild to moderate intellectual impairment and athetoid cerebral palsy. Stuart has no functional speech, but he understands a wide range of spoken language, has some signing capability and uses vocalisations that are interpreted by people as having a variety of meanings. At school, Stuart spent most of his time in his wheelchair. His behaviours were disruptive and included reaching out to touch staff and students, as well as self-injurious behaviours. Stuart’s self-injury included pulling hair and skin from his head, tearing at his ears and scratching his face. When he self-injured he would often be restrained by the use of wrist-straps in his wheelchair. The behaviours occurred when Stuart’s requests were not attended to, and he would vocalise and reach for a staff member. Stuart would often move his arms and hands when he was in his wheelchair, and he would grasp items and objects that were within reach (often a reflexive sensory response), but would release his hold when requested. A behaviour management plan that used restraint was initially written by a child psychiatrist for use by the school staff. A revised plan was later developed, in consultation with the doctor, that aimed to equip the school staff with positive strategies to more effectively reduce the likelihood of self-injurious behaviour, as well as to respond to the behaviour when it occurred. Stuart often stayed at respite in the company of other young people with more severe physical disabilities. The other residents generally were not able to interact with him, and he sought contact with staff. The staff said that he was often a nuisance due to his need for active involvement with them when they needed to be available for other residents. Stuart attended the YMCA during school holidays. The support staff were encouraged to involve him in activities that provided opportunities for him to be out of his chair and actively engaged in physical play. Stuart does not engage in self-injury when he is calm, or when people are close to him and paying attention to him. The behaviour can be a way of protesting, and can intensify when he is made to do a non-preferred activity. It can also be seen as a way to ask for help, and to get someone to spend time with him. The behaviour stops after Stuart has been given appropriate attention, and when he is distracted by carers. The self-injurious behaviour was not observed or recorded as being a concern at respite. The concerns noted by the care staff were associated with Stuart arriving at respite after having injured himself at school or on the way from school to respite. Intervention was based on an understanding by all service providers that a collaborative partnership was the essential basis of a whole-of-life support focus for Stuart. Many meetings were held that

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included his disability case manager, his family, and relevant staff from his school, his respite settings, his health services and his guardianship service. There were discussions regarding the providing of information that enabled a ‘shared-common understanding’ of Stuart’s health and welfare needs and allowed appropriate behaviour management strategies to be applied in all settings. The intervention team was able to integrate several service providers into a cohesive and supportive group – much to the relief of the foster parents who had previously been trying to manage what seemed to be a disparate group of self-interested service providers. The outcome was a successful reinvention of Stuart from an ‘attention seeking, grabbing nuisance’ to a generally well-liked and well-supported ‘sweet young man’.

(David Betchley, Specialist Intervention Support Services, Intellectual Disabilities Services Council)

• Give the person appropriate support. The support can include verbal reassurance (‘Let’s try it, we can always change it if there are problems’), but may also include actual training in strategies, and making books and resources available. • Communicate respect for the person’s expertise. It is best to start with the belief that people are already skilled, but can become better able to solve a difficult problem if certain resources are made available. • Share information (‘This is what I found/observed, what do you think?’; ‘How can this help us to understand the problem?’) • Don’t try to do more than is practical in terms of program planning and the provision of resources, and don’t gloss over the amount of time and effort that may be needed if a certain approach is to be introduced. Stuart’s story, which appears in box 14.2, gives an example of collaborative problem-solving that involved a wide range of participants.

Collaborating with parents and families In the last decade there has been increasing recognition of the value of involving families in the development of goals and plans. Despite this, there still appear to be difficulties with involvement, especially at the school level and beyond. Research shows that families continue to

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provide important support to people with a disability throughout their lives (Devlieger & Trach, 1999), although this occurs at a time in the life cycle when adults with a disability should be encouraged to be independent, or at least semi-independent. Michael, Arnold, Magliocca and Miller (1992) concluded that parents are seen as subordinate by teachers, with few truly collaborative situations being developed. Greaves (1995) suggested that professionals needed to respond more appropriately to the strong sense of isolation felt by parents. It was also found that parents’ views were not necessarily acknowledged and their expertise not utilised, with an attitude of the ‘expert knows best’. Tiegerman-Farber and Radziewicz (1998) found that parents could be intimidated in the presence of professionals, and feared not being part of the support teams or not being informed when decisions were to be made. Surveys and reviews (Blamires et al., 1997; Fuller & Olson, 1998; Kroth & Edge, 1997; Lake & Billingsley, 2000) have identified a number of barriers to family involvement: • time Single and working parents may have difficulty finding time to get to meetings. • intimidation Some parents feel intimidated or devalued by professionals. They may avoid asking questions they want to ask, with their comments seen as a criticism or themselves seen as a nuisance. Conversely, carers may worry about upsetting parents. • lack of understanding of the system Parents may not understand how care and support systems work. They may also find paperwork difficult to deal with. • cultural differences Acceptable behaviours and courtesies are different in different cultures. You may unintentionally offend parents from different cultures. • emotional barriers Parents are usually emotionally involved with their children and may feel offended or patronised by professionals who offer simple explanations for their complex findings. • despair Parents may feel there is no point attending meetings any more. They may be tired of continually describing their difficulties or expectations to professionals who listen and move on. There may be additional barriers in relation to fathers, who may feel out of place in a meeting of mainly women, and may not know of

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opportunities for involvement because they are not in the direct line of communication. Principles of parental involvement In talking with parents there are various principles that have been suggested by a number of authors (Bastiani, 1989; Simpson, 1996; Stacey, 1991). The main principles are as follows: • Be honest and specific – do not create a false sense of progress or security. • Observe carefully. Notice how you are feeling and how that is affecting the discussion. Recognise that parents may be feeling inhibited or tense as they are in unfamiliar territory. Give them time to relax, to take in what is said and to offer their views. • Avoid responding negatively to high goals set by parents for their child. • Be willing to review issues that have been discussed previously. Parents may wish to periodically review previously discussed information and to share their perception and feelings regarding it. • Listen to parents. This can be therapeutic for them – they may be looking for an opportunity to share concerns with someone who can empathise with their situation. • Avoid hasty attempts at problem solving, advice giving, and information dissemination. • Good relationships take time. A viable working partnership does not mean that people have to agree on everything; it does mean there should be respect for the other’s experience. These principles highlight the importance of sharing power with the people who are the centre of any program, as epitomised by personcentred planning (Sanderson, 2002; Sanderson, Kennedy, Ritchie & Goodman, 1997; Schwartz, Jacobson & Holburn, 2000). Emphasis is placed on consulting the person about the planning process and ensuring that all relevant people are included and treated with respect. The plan is seen as an offer, not an imposition, and involves making sense of the person’s place in the world and how the world looks at them. Medalie (1997) emphasises that the family system is a sensitive structure, where a change in one member affects all the others. He

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uses the analogy of a spider web; you can’t touch one strand without the whole web vibrating. Lambie (2000) has suggested that parents may not participate because they are worried that they may appear stupid, confused or indecisive. They may also feel that they have failed their child, and that their parenting skills will be judged. It was suggested that information be presented to parents before team meetings so that time can be devoted to discussion and participation. Bui and Turnbull (2003) claim that many of the core values of person-centred collaboration may not be consistent with AsianAmerican cultural values, which, they say, may have low expectations of people with disabilities, a hierarchical family system and an emphasis on putting the needs of the family first. Such values may conflict with the core values of person-centred collaboration, which advocate equal partners, community inclusion, self-determination and a focus on the preferences of the person. Deference to the knowledge of the professional, which is also a feature of Asian culture, may also mean that the valuable knowledge of family members does not become part of the discussion. Andrew’s story in box 14.3 gives an example of collaboration between a family and professionals that produced positive outcomes.

Conclusion Human communication is very complex, with a wide range of factors likely to influence how it may be interpreted. People interpret communications in the context of their personal experience, and the aim of effective communication is to ensure as large an overlap as possible between the intended and the received meaning. In order for this overlap to occur, it is important to listen carefully, and a variety of important listening skills have been identified that may facilitate the sharing of meaning. Effective listening is a prerequisite to successful collaboration, as is the ability to resolve conflict, and the main principles of conflict resolution were reviewed. The chapter also reviewed the nature of collaboration and its importance in the work situation, where professionals, families and managers are increasingly expected to work closely together. The main steps in the collaborative process were highlighted, with the main principles identified and their implications for person-centred planning discussed.

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• ANDREW’S STORY

The intensive intervention team is multidisciplinary and undertakes short-term intensive interventions with people who have intellectual disability and challenging behaviours. The team currently consists of a social worker, two psychologists, a developmental programmer (disability studies), a part-time speech pathologist and occupational therapist, and three intensive intervention workers with various experiences. Andrew is an active 11-year-old boy who has been diagnosed as having severe autism and intellectual disability. He was referred to the intensive intervention team by the options coordinator. The behaviour problems identified at the time of referral were tearing clothing and other materials, skin rubbing, poor sleep patterns and urinating in his bedroom. A comprehensive assessment was undertaken, which included communication assessment, an occupational therapy assessment, a functional analysis of the behaviours, a review of current and historic case notes and direct observation. There were also interviews with key people in Andrew’s life, including his mother, his father and his father’s partner, teachers, after-school and vacation-care workers, and grandparents. The assessment showed that there had been a range of recent changes in Andrew’s life causing anxiety, with inconsistencies in expectations, boundaries and communication styles across the various environments. The hypotheses generated from the assessment was that these variations, which resulted in an increase in anxiety, were affecting Andrew’s ability to cope. Andrew’s general presentation, as well as past and present behaviours, also indicated that he had exceptionally high needs for tactile sensory feedback. It seemed he had found that ripping and skin rubbing assisted him in this area. The intervention goals were: •

to increase predictability through the use of visual communication in the family home

•

to share information with those who support Andrew to help them understand his unique needs

•

to identify and incorporate into Andrew’s daily routine a range of suitable activities to help him have his sensory preferences met

•

to develop clear routines, boundaries and expectations

•

to identify further recreational opportunities for Andrew.

The intensive intervention team had a number of meetings with key workers; for example, Andrew’s teacher, and vacation and afterschool-care workers. The team was able to use several strategies that the school had found successful, while the school team incorporated the recommended intensive intervention team strategies. The intensive intervention team provided several hours support

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over a 12-week period across the various settings to help implement and consolidate the recommendations. As a result there was a reduction in the behaviours at school, an increase in positive attitudes towards Andrew and an understanding of his needs. The team also worked with Andrew’s mother to develop a visual communication system, as well as clear boundaries and expectations that fitted with the family’s lifestyle. Once these were in place, the team shared relevant information and strategies with Andrew’s father and his partner to ensure consistency across settings. To provide additional support through personal networks, the team met with family members to provide an understanding of Andrew’s unique needs, giving them a different perspective of the situation that resulted in a change in attitude in areas they once viewed negatively. Throughout the intervention, the intensive intervention team met regularly to discuss the progress of the intervention and to brainstorm any difficulties that arose. Toward the end of the intervention there was a regression in Andrew’s behaviour, so the clinical team coordinator and intervention worker met with his mother and case manger to develop a timeline, looking at changes or events that occured and overlaying these with the dates when there had been an increase in problem behaviour. This information was then taken back to the whole intensive intervention team meeting, where the members brainstormed possible problems from each of their discipline-specific perspectives. As a result, the team was able to tease out the problems and share this insight with Andrew’s mother. The behaviours again reduced, and progress was made. Andrew continues to require a high level of support, but due to the collaborative work undertaken by his family and professionals, there has been an 80 per cent decrease in ripping behaviour (he currently rips only magazines, which he is given). Andrew’s mother has reported that his sleep patterns have improved and are no longer seen as an issue. The skin rubbing and the urinating in places apart from the toilet have stopped completely.

(Barbara Yates, Specialist Intervention Support Services, Intellectual Disability Services Council)

Learning activities 1

It is vital that carers, parents, therapists, community support workers and volunteers communicate regularly to ensure an effective coordination of resources. There are, however, many potential barriers to such communication.

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(a) List the important barriers to communication that you perceive in your working environment. (b) Consider the barriers you have listed in terms of how much control you have over them. Designate each barrier as highly controllable (H), somewhat controllable (S), or not controllable (N). (c) List any opportunities available to improve communication in your working environment that are not currently being used. Some of these may reduce the impact of the barriers you have identified. (d) Consider the control or influence that you have for capitalising on the opportunities you have listed. Designate each opportunity as highly controllable (H), somewhat controllable (S), or not controllable (N). 2

Effective listening is important for healthy interpersonal relationships. Listening can also minimise the likelihood of communication misinterpretations and correct them before they do too much damage. It is useful to think about the personal impact of listening skills on yourself. (a) Briefly recount one time in your life when someone was an attentive or empathic listener. List five adjectives or adverbs to describe how their listening made you feel. (b) Think of an important time in your life when someone was an ignoring listener. List five adjectives or adverbs to describe how that person’s half-hearted listening made you feel.

3

For many people, the thought of expressing exactly how they feel is daunting for a variety of reasons. Listed below are some of those reasons. Use the list to consider any personal barriers. Relate these to specific situations in your relationships. Demands on self • I must avoid conflict. • I must be liked. • I must not be selfish. • I must not hurt others.

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• I must not seem vulnerable. • I must not show anger. • I must not make the first move. • I must not make a mistake. • I must not admit a mistake. Fears about others’ reactions • Others might reject me. • Others might criticise me. • Others might consider me emotional. • Others might think I am pushy. • Others might consider me uptight. 4

Identify a recent personal conflict, and discuss which barriers from the following list may have been present. • Did either party try to make the channels of communication ineffective? • Did either party try to empathise with the other? • Was the position of one person ever restated by the other, to their satisfaction? • Did the parties induce feelings of hostility in each other? • Was any kind of cooperation discouraged? • Was the concept of joint decision-making rejected? Was it even considered? • Did the parties try to impose their solution on each other? • Was strategy involved? If a strategy was used, did each party try to outwit the other? • Was there deception (dishonesty) involved?

5

Carter et al. (1995, p. 43) have identified a number of questions that need to be asked about the effectiveness of the collaboration process. Assess your own collaboration performance using this checklist.

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• Is information and expertise shared actively among team members, both informally and formally? • Are aspects of assessment conducted jointly on the person’s usual routines? • Are relevant programs discussed with team members, including parents, and are decisions made by consensus? • Are families actively involved in planning and decision making, or is their involvement tokenistic? • Do consultants’ programs arrive on the direct-care worker’s desk with little or superficial discussion? • Are goals developed jointly by all relevant team members and incorporated into programs to the greatest extent possible? • How much time is spent in direct service provision, and how much is invested in planning, collaboration, programming and monitoring? • Is conflict openly acknowledged and constructively resolved? • Are team meetings held at a time when all members can attend?

References Aldinger, L. E., Warger, C. I. & Eavy, P. W. (1991). Strategies for teacher collaboration. Ann Arbor, MI: Exceptional Innovations. Bastiani, J. (1989). Working with parents: A whole-school approach. London: NFER-Nelson. Blamires, M., Robertson, C. & Blamires, J. (1997). Parent–teacher partnerships. London: David Fulton. Blue-Banning, M., Summers, J. A., Frankland, C., Nelson, L. L. & Beegle, G. (2004). Dimensions of family and professional partnerships: Constructive guidelines for collaboration. Exceptional Children, 70, 2, 167–84. Blue-Banning, M., Turnbull, A. P. & Pereira, L. (2000). Group action planning as a support strategy for Hispanic families: Parent and professional services. Mental Retardation, 38, 3, 262–75. Bodine, R. J. & Crawford, D. K. (2000). The handbook of conflict resolution: Education. San Francisco: Jossey Bass. Bowman, B. D. V. (1999). Thinking outside the box: Use of invitational counseling to promote self-determination for people with disabilities. Mental Retardation, 37, 6, 494–6. Bui, Y. N. & Turnbull, A. (2003). East meets west: Analysis of person-centred planning in the context of Asian American values. Education and Training in Developmental Disabilities, 38, 1, 18–31. Clare, L. & Cox, S. (2003). Improving service approaches and outcomes for people with complex needs through consultation and involvement. Disability & Society, 18, 7, 935–53.

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Coben, S., Thomas, C., Sattler, R. & Morsink, C. (1997). Meeting the challenge of consultation and collaboration: Developing interactive teams. Journal of Learning Disabilities, 30, 4, 427–32. Cook, A. & Lennox, N. (2000). General practice registrars’ care of people with intellectual disabilities. Journal of Intellectual & Developmental Disability, 25, 1, 68–77. Cooley, E. L. & Triemer, D. M. (2002). Classroom behavior and the ability to decode nonverbal cues in boys with severe emotional disturbance. Journal of Social Psychology, 142, 6, 741–52. Devlieger, P. J. & Trach, J. S. (1999). Mediation as a transition process: The impact on postschool employment outcomes. Exceptional Children, 65, 4, 507–23. Ekert, S. P. (2000). Teaching the social skill of accepting criticism to adults with developmental disabilities. Education and Training in Mental Retardation and Developmental Disabilities, 35, 1, 16–24. Fuller, M. L. & Olson, G. (Eds). (1998). Home–school relations. Boston: Allyn & Bacon. Greaves, D. (1995). Enhancing the parent–professional relationship. Australian Journal of Remedial Education, 27, 1, 16–19. Grinspan, D., Hemphill, A. & Nowicki, S. (2003). Improving the ability of elementary school-age children to identify emotion in facial expression. Journal of Genetic Psychology, 164, 1, 88–101. Holburn, S. & Vietze, P. (1999). Acknowledging barriers in adopting person-centred planning. Mental Retardation, 37, 2, 117–24. Kampwirth, T. J. (2003). Collaborative consultation in schools. Columbus, OH: Merrill. Krogh, K. (1998). A conceptual framework of community partnerships: Perspectives of people with disabilities on power, beliefs and values. Canadian Journal of Rehabilitation, 12, 2, 123–34. Kroth, R. L. & Edge, D. (1997). Strategies for communicating with parents and families of exceptional children. Denver: Love Publishing. Lake, J. F. & Billingsley, B. S. (2000). An analysis of factors that contribute to parent–school conflict in special education. Remedial and Special Education, 21, 4, 240–58. Lambie, R. (2000). Working with families of at-risk and special needs students: A systems change model. Focus on Exceptional Children, 32, 6, February, 1–22. McKay, H. (1995). Why don’t people listen? Sydney: Pan. Medalie, J.H. (1997). The patient and family adjustment to chronic disease in the home. Disability and Rehabilitation, 19, 4, 163–70. Melamed, J. C. & Reiman, J. W. (2000). Collaboration and conflict resolution in education. The High School Magazine, 7, 7, 16–20. Menchetti, B. M. & Garcia, L. A. (2003). Personal and employment outcomes of personcentred career planning. Education and Training in Developmental Disabilities, 38, 2, 145–56. Michael, M. G., Arnold, K. D., Magliocca, L. A. & Miller, S. (1992). Influences on teachers’ attitudes of the parents’ roles as collaborator. Remedial and Special Education, 13, 2, 24–30, 39. Mitchell, G. & Hastings, R.P. (2001). Coping, burnout, and emotion in staff working in community services for people with challenging behaviors. American Journal on Mental Retardation, 106, 5, 448–59. Overton, S. (2005). Collaborating with families: A case study approach. Columbus, OH: Pearson. Pease, A. (1986). Body language. Sydney: Camel Publishing. Pugach, M., Johnson, L. & Lilly, S. (1995). Collaborative partners, collaborative schools. Denver: Love Publishing. Sanderson, H. (2002). A plan is not enough. In S. Holburn & P. M. Vietze (Eds), Person centred planning: Research, practice and future directions (pp. 97–126). Baltimore: Paul H. Brookes. Sanderson, H., Kennedy, J., Ritchie, P. & Goodwin, W. (1997). People, plans and possibili-

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ties: Exploring person-centred planning. Edinburgh: SHS. Schwartz, A. A., Jacobson, J. W. & Holburn, S. C. (2000). Defining person centredness: Results of two consensus methods. Education and Training in Mental Retardation and Developmental Disabilities, 35, 3, 325–249. Shaddock, A. J., Hill, M. & van Limbeek, C. A. H. (1998). Factors associated with burnout in workers in residential facilities for people with an intellectual disability. Journal of Intellectual & Developmental Disability, 23, 4, 309–18. Shea, T. & Bauer, A. (1991). Parents and teachers of children with exceptionalities: A handbook for collaboration. Boston: Allyn & Bacon. Simpson, R. L. (1996). Listening to parents and family members. In R. L. Simpson (Ed.), Working with parents and families of exceptional children and youth (3rd edn) (pp. 117–30). Austin, TX: Pro-Ed. Spedding, S. (2001). Teachers as agents of change. In P. J. Foreman (Ed.), Integration and inclusion in action (2nd edn) (pp. 391–430). Sydney: Harcourt Brace. Stacy, M. (1991). Parents and teacher together. Milton Keynes, UK: Open University Press. Tiegerman-Farber, E. & Radziewicz, C. (1998). Collaborative decision making. Columbus, OH: Merrill. Whiting, P. R. & Robinson, G. L. (2001). The interpretation of emotion from facial expression for children with a visual sub-type of dyslexia. Australian Journal of Learning Disabilities, 6, 4, 6–14. Zeigler-Dendy, C. A. (2000). Teaching teens with ADD and ADHD. Bethesda, MA: Woodbine House.

Index

AAMR 119–20 ABC charts for behaviour analysis 182 accessibility guidelines 227 accommodation options 65–67, see also institutions behaviour and 177 choice in 96–97 comparison of 286–88 continuum concept 194–95 decision-making 94–95 funding for 276 support services 278–80 accountability 234–35 financial 306–7 plan monitoring and 127 quality assurance and 71, 308–12 ACROD Limited 219, 309, 314–15 action plans 226 action research 210–11 active support 152–53, 162 activist groups, see advocacy groups activities, assessment of 157–58 adaptive behaviour 97 scales for 119, 154–56 teaching 90 administrative performance standards 327 advocacy 40, 88, 276 advocacy groups 39–41 Disabled People’s International 30, 43, 46 Intellectual Disability Rights Service 229–31 aged care 248–49

agency training plan 334–35 AIHW 16–17, 279 air travel 274–75 Alana’s story (case study) 274–75, 285 Americans with Disabilities Act (US) 220 Andrew’s story (case study) 383–84 anger management 372 antecedent-behaviour-consequence charts 182 Anthony’s story (case study) 242 anti-discrimination legislation 18, 225 aspirations of people with disabilities 37–38, 121, 204 assessment for individual service plans 117–23 of behaviour 176–77, 180–84 people with intellectual disability 154–63 assimilation policy 5, 69 associated conditions of intellectual disability 148–49 assumptions of support workers 199–200, 355 attendant care 279, 284 attending skills 359–60 attitudinal issues 354 Australia accommodation support services 279 activist groups 219 codes of ethics 246 deinstitutionalisation in 193–94 Disability Discrimination Act (Cwlth) 18, 30–31 disability funding 72

Index disability policy reform 299–300 disability strategies 31 ethical practice in 248–49 euthanasia debate 44–45 incidence of disability 16–17 institutional approach 32–33 legislation 221–32 professional organisations 244–45 society in 5 stem cell debate 43–44 trends in support 153–54 Australian Bureau of Statistics surveys of care 10 Australian Council for the Rehabilitation of the Disabled 219, 309, 314–15 Australian Immigration Restriction Act (Cwlth) 5 Australian Institute of Health and Welfare 16–17, 279 Australian National Training Authority 244–45 Australian Psychological Society Code of Ethics 246–47 autonomy, see independence; person-centred approach; self-determination barriers to behaviour change 185–86 barriers to communication 353–57 Basil Stafford Centre 33 behaviour change 164, 171–90 belief systems 51–77 benchmarking partners 308 best practice 163–68 bio-behavioural states 149–50 bioethics issues 42–44 black American civil rights movement 28–29 Blatt, Burton 32 body language 361, see also non-verbal communication bonding relationships 196–97, 204–6 bridging relationships 196–97, 204–6 Britain advocacy groups 39–40 legislation 221 business models 305–6 Canada, legislation 221 care, ethic of 256–58 caregivers, see also families; parents; professionals; support workers aspirations of 121 attendant care 279, 284 interactions with people with disabilities 174–75

391

intimidation of 380 personal aspects of 187–88 self-evaluation of 178 case-based funding 65, 235 case studies Alana’s story 274–75, 285 Andrew’s story 383–84 Anthony’s story 242 Delando Corporation 20 Doris’s story 287 Frank’s story 100 Glenda’s story 181 Ian’s story 147–48 Irene’s story 34–35 Jack’s story 369–70 James’s story 305 Jim’s Program Planning 160 Judy’s story 230–31 Maria 122–23 Matthew’s story 187 Mavis’s story 206 Michael’s story 205 Michelle’s story 61–62 Robert’s story 209 Sharon’s story 159 Stuart’s story 378–79 Sue and Mary’s story 283 Susan’s story 261 Wee 113–14 catastrophe, disability as 45–47 Center for Effective Collaboration and Practice 184 Central England People First 41 cerebral palsy 72, 149 challenging behaviours 171–75, 372–73 change, tools for 209–10 charitable model of disability 43, 54 choice, see decision-making; self-determination citizenship 65, 73 civil rights 28–36, 54, 115, see also human rights declarations classification systems 7–8 clients, see people with disabilities; people with intellectual disability clustered housing 288 Code of Practice for Social Care Workers (UK) 261, 263–64 codes of conduct 249–50, 254 codes of ethics 254 General Social Care Council (UK) 263–64 National Alliance of Direct Support Professionals (US) 261–63 professional 245–48, 250

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Community disability services

cognitive disability, see intellectual disability; people with intellectual disability collaboration 373–82 in ethical decision-making 265 in positive behaviour change 185–86 with co-workers 316–20 Commonwealth State/Territory Disability Agreement 222 funding under 224–25, 275–80 policy environment 301–7 communication between stakeholders 352–80 communication by people with disabilities aids to 58, 63 aspirations for 37 assessment scales 120 behaviour change and 176–77, 185 facilitated 166 in decision-making 90–93 misjudgment of capacity 138 severe impairments in 150–51 community activities, inclusion of people with disabilities 67–69, 191–214 community residential units 195 community services training package 334–35 community supports 22–23 best practice 163–68 funding for 69–71, 276 generic 273–75 inventory of 207 vs. institutionalisation 281 conflict resolution 255–56, 366–73 conflictual societies 4–6 congregate care, see institutions consensual societies 4–5 consultation, see collaboration consumer-directed services 289–90 Convention on the Human Rights of Persons with Disabilities 54 co-residency 284 corrective feedback 341–42 cost-effectiveness, see funding criminality and intellectual disability 228–29 critical service accomplishments 121–22 criticism, handling 368–71 CSTDA, see Commonwealth State/Territory Disability Agreement cultural issues in caregiving 363, 380, 382 Davis, Alison 43 day care centres 193 deafness 7, 72 decision-making, see also independence;

self-determination aids to 85 complex 93–95 ethical issues 264–67 involvement of people with disabilities 40 standards for 367 Declaration of the General and Specific Rights of the Mentally Retarded 18, 29 Declaration on the Rights of Disabled Persons 29, 54 Declaration on the Rights of Mentally Disabled Persons 54 deinstitutionalisation 281, see also institutions economic consequences 69–70 in Australia 193–94 limited success of 236 trend towards 19 Delando Corporation (case study) 20 Dent, Bob 44 Department of Neighborhoods 207 development, see instruction; learning and development developmental disabilities, see intellectual disability deviance, social view of 4–5 diagnostic terms, intellectual disability 148 dignity of risk 253 dignity, right to 115 direct support professionals, see caregivers; professionals; support workers disability conceptions of 3–26 economic costs of 71–72 Disability Discrimination Act (Cwlth) 18, 30–31, 56, 225–28 Disability Discrimination Act (UK) 221 Disability Empowerment Advocacy and Support (NZ) 40 disability movement, see advocacy Disability Rights Commission (UK) 221 disability services 51–77 standards for 222–24 Disability Services Act (Cwlth) 31, 222 Disability Services Act (Qld) 222–23 Disabled People’s International 30, 43, 46, 219 Disabled Persons Assembly (NZ) 40 disease-based model, see medical model of disability dispute resolution 255–56, 366–73 Doris’s story (case study) 287 Doyle, Tony 67–69

Index dual relationships 258–59 ecological inventories 156–61, see also environment ecological validity of behavioural support 173 economic issues, see funding education, see learning and development efficiency 235, 329 ELP 129–30 Ely Hospital (UK) 32 emotions hurt and rejection 202 management of 371–72 of family carers 380 reflecting 361 Employer’s Forum on Disability (UK) 66–67 employment for people with disabilities 67, 178, 276, 346 empowerment 19, 81–109, 136–37 enabling legislation 218–25, see also legislation and legal issues environment assessment of 119, 157 ecological inventories 156–61 effect on self-determination 63 social contexts of behaviour 177 Essential Lifestyle Planning 129–30 ethical issues 39, 42, 241–71 Ethics of limiting life-sustaining treatment, The 42–43 eugenics 45 euthanasia debate 44–45 evaluation of individualised plans 163 of learning and development 345–46 performance measures 308–10, 326–30 productivity measures 303 evidence-based practices 73 for people with intellectual disability 146 in risk management 102 experience, contribution of 200–201, 252 extrinsic reinforcement 342–43 facial expression 363 facilitated communication 166 facilitators 136–37, 204 families aspirations of 121 collaboration with 379–82 relationships within 196 role in meetings 364–65 support centred on 234

393

view of professionals 358 fathers 380–81 feedback from monitoring performance 331, 340–43 in instruction 339–40 negative, handling 368–71 positive, to managers 318–19 positive, to staff 342–43 receiving 343 feelings, see emotions filters in ethical decision-making 264–65 financial management 86–89, 306–7 flexible funding 233 flexible supported living 37 formal supports 234 formal training 336 foster care 284 Frank’s story (case study) 100 friendships 202–3, see also relationships functional behavioural assessment 180–84 funding, see also government; management issues Commonwealth, standards required for 224–25 Commonwealth State/Territory Disability Agreement 275–80 cost-limited resourcing 235 economic rationalism 21–22, 69–72, 302–7 effect on policies 299–301 flexibility in 233 for behaviour support 179 of community-based services 69–71 self-determination approach to 64–65 general practice registrars, communications issues 354–55 general service plans, see individualised plans General Social Care Council (UK) 244, 261, 263–64 generic community services 273–75 gifts given to others 200–201 Glenda’s story (case study) 181 Global Inclusion Benchmark 66–67 globalisation 69–72 government, see also funding; legislation codes of conduct 249 disability policies 232 disability-related departments 219 dominates service options 311 housing regulations 282 local councils 207–8 occupational health and safety frame-

394

Community disability services

works 314 permanency of assessment by 312 group homes 94–95, 97, 283–88 growth, tools for 209–10 guardianship 86–89 happiness, balancing with safety 102–3 Health and Disability Commissioner Act (NZ) 30 health care 71, 164 hearing loss, see deafness heterogenous societies 4–6 High Beam Festival for Disability Arts 68 Hockenberry, John 44 holistic approach xiii, 10–11 homeostatic balance 172 homogenous societies 4–5, 6 hostels 96–97, 284 housing, see accommodation options human context of support 187–88 Human Rights Act (Canada) 221 Human Rights Act (NZ) 30–31 human rights declarations 18, 53–56, 223, see also civil rights Ian’s story (case study) 147–48 ICAP 155 ICF 10–11 illness, economic costs of 71–72 impairment-based systems 9–10 in-service education 336–37 incidence of disability 16–17 inclusion 65–67 independence, see also decision-making; self-determination meanings of 59–60 promotion of 19 skills for 97 individual approach to disability 11–12 individualised plans 59, 110–28, 233 for accommodation 282–86 for behaviour change 176–77 for behaviour support 184–85 for budgeting 289 funding for 64–65 implementing 162 performance evaluation 327 Individuals with Disabilities Education Act (US) 220 informal supports 234 informal training 336 information gathering, see assessment institutions, see also deinstitutionalisation barriers to collaboration in 376 choice in 96

conditions in 32–36 continued use of 279 for people with intellectual disability 153 history of 27–28 improvement of 194 instruction, see learning and development integrity of assessment 117–19 intellectual disability, see also people with intellectual disability choice and 88–90 criminality and 228–29 definitions of 198 developmental xiv economic costs of 72 incidence of 17 Intellectual Disability Rights Service (NSW) 229–31 Intellectual Disability Services Council 68 International classification of functioning, disability and health 10–11 International Convention to Eliminate Discrimination Against Persons With Disabilities 29 International Statistical Classification of Diseases and Related Health Problems 10 International Year for Disabled Citizens (1981) 29, 31 Inventory for Client and Agency Planning 155 IQ scores, see intellectual disability Jack’s story (case study) 369–70 James’s story (case study) 305 Jim’s Program Planning (case study) 160 Judy’s story (case study) 230–31 justice, ethic of 256–58 Kaplan, Fred 32 King, Martin Luther 28–29 Kingseat 34–35 leadership, demonstrating 316–20 learning and development Australian National Training Authority 244–45 contribution of 252 for people with intellectual disability 153–54 for support workers 125, 324–51 inclusion of in individual service plans 117 learning organisations 344–45 needs analysis 333

Index least restrictive environment principle 53, 65–67, 194 legislation and legal issues 18, 217–32 effect on policies 298–99 legal competence 87 litigation risks 303 occupational health and safety 312–13 relation to practice 53, 235–36 life decisions 91, 96–98 life goals vs. service goals 193 lifestyle, see quality of life issues limited guardianship 87 listening skills 39–41, 357–61 local area coordination 61–62 local councils 207–8 management issues 296–323 managerialism 302–7 managers, working with 316–20 managing up 318–19 MAPs 131 Maria (case study) 122–23 Martin, Robert 30–31 Matthew’s story (case study) 187 Mavis’s story (case study) 206 McEninery, Irene 33–35, 38–39 McGill Action Planning System 131 measurement strategies, in medical model 12 media local papers 208 recognition in 319 treatment of disability 44 medical model of disability 12, 36 dominates discourse 43, 355 impairment-based approach 9–10 intellectual disability 198 medication, requirement to take 86 meetings communication in 363–66 developing trust in 357 informal, places for 209 participation in by people with disabilities 124 mentoring 332 messages, see communication Michael’s story (case study) 205 Michelle’s story (case study) 61–62 Michigan (US), individualised budgeting 289–90 Milparinka Agency training plan 334–35 mission statements 300–301, 325 monitoring an individualised plan 126–28, 165 monitoring staff performance 331–32,

395

340–43 moral development hierarchy 256–58 Motivation Assessment Scale 183 multisensory environments 167–68 National Advisory Committee on Health and Disability (NZ) 37–38 National Alliance of Direct Support Professionals (US) 244, 261–63 National Council on Intellectual Disability 219 National Health and Medical Research Council 42–43 needs, see support needs New Zealand activist groups 39–40 anti-discrimination legislation 30–31 Disability Strategy 40 institutional approach 32–33 shock treatment in 36 Newell, Christopher 41–43 newspapers, local 208, 319 NHMRC 42–43 non-government services 278 non-verbal communication 357–63 normalisation 56–57, 194 Oakley Report (NZ) 32–33 objectives of individualised plan 124 occupational health and safety issues 103–4, 312–16 Office of the Public Advocate 116–17 older people with disabilities 233, see also aged care operationally defined performance standards 328–29 ordinary life, aspirations for 204 organisational issues, see also policies learning organisations 344–45 Vision and Mission statements 300–301 outcome standards 329–30 paradigms of disability 4–7, 192, 302 paradox of disability 15–16 parents, see caregivers; families participation outcomes 308 participatory action research 210–11 partnership approach 36–41, see also person-centred approach paternalism 36–41, 55 PATH 131–33 people-first principle 8, see also personcentred approach people with disabilities assumptions of support workers 355

396

Community disability services

interactions with caregivers 174–75 people with intellectual disability 145–70, see also intellectual disability accommodation support services 279 communication problems 355 community presence of 195 explaining rights to 31–32 limited choices of 83 self-determination for 63 underrepresented in advocacy 41 performance evaluation, see evaluation person-centred approach 20–21, 58–59, 200–204, 233 ACROD Limited guidelines 309 active support 162 collaboration in 381 need to monitor 73 performance standards for 335 planning for 111–14, 128–38 postmodern theories 14 to risk management 100–104 vs. business model 305 personal barriers to communication 355–57 Personal Futures Planning 132–36 personal involvement in listening 358–59 personalised plans, see individualised plans PFP 132–36 plane travel 274–75 Planning Alternative Tomorrows with Hope 131–33 planning for support 110–44, 158–61 plenary guardianship 87 policies 218, 232–40 organisational differences in 252–53, 297–307 relation to practice 53, 235–36 political issues at work 317 disability defined by 13 effect on policies 299–300 in collaboration 376 medical model of disability 36 power imbalance 63, 259 representation in 218–19 positive behaviour supports 171–90 positive feedback, see feedback postmodern theories 14, see also personcentred approach power 82–86, see also political issues imbalance in 63, 259 sharing 311 practitioners, see professionals; support workers

preference assessment 91–92, see also selfdetermination prelinguistic behaviours 151 prerequisite conditions for communitybased service 164–65 principles of disability service provision 53–72, 115 priorities for support 161–62 process standards 329–30 Productivity Commission 227–28, 314–15 productivity measures 303 professionals, see also support workers barriers to communication 354–55 collaboration between 373–82 determine level of self-determination 60–61 ethical issues 243–46 in meetings 364 listening skills 358 overwork 376 perception of situation 367 professionalisation of disability 36 recognition and reward for 332 relationships with clients 260 role of 136, 244 ‘profound’ intellectual disability 148 program quality indicators 165 programs paradigm 192 protective legislation 218–21, 225–26, see also legislation and legal issues psychometric scales 120 public sector, see government public transport accessibility 227, 274–75 punitive models of behaviour change 175 qualitative and quantitative plan monitoring 126–27 quality assurance accountability and 308–12 monitoring staff performance 331 reviews 235 quality of life issues 56–58 assessment scales 120 Essential Lifestyle Planning 129–30 life decisions 96–98 lifestyle change 137 measurement problems 72–73 questionnaire 91 Questions About Behavioral Function 183 rating scales for behaviour analysis 183 reality, social construction of 197–200 record-keeping, in risk management 103 Reeve, Christopher 43, 46 reflective listening 360–61

Index Rehabilitation Professionals Association (SA) 244 reinforcement of instruction 342–43 rejection of knowledge 42–45 relationships 202–6, see also political issues aspirations for 38 ethical issues 258–61 map of 134 reciprocity in 138 types of 196–97 reliability of assessment 117–18 resident choice assessment scale 91 residential campuses 288 residential institutions, see institutions resistance to collaboration 376–79 right-to-life debate 41–47 Rights of the Terminally Ill Act (NT) 44 risk management 98–104 assessment scales 120 autonomy vs. safety 95 in ethical decision-making 264–67 under economic rationalism 303 Robert’s story (case study) 209 role play instruction 337–39 safety 95, 99 sampling, instruction about 338 scatterplots for behaviour analysis 182 school, independence as goal of 23 Seattle (US) 207 self-advocacy movement 18, 208 self-analysis 244–45, 353, 377 self-determination 19, 59–65, 81–109, see also decision-making; independence self-directed learning 336 self-help 197, 317 semi-independent living, see supervised apartments sensory impairments 149 sensory integration 166–67 service goals vs. life goals 193 service-mediated lives 195–96 services, see support services sexual abuse of people with disabilities 36 SHARE 374 Sharon’s story (case study) 159 shock treatment 36 Should the baby live? The problem of handicapped infants 43 silence, veil of 27–50 skeletal deformity 149 social approach to disability 12–14 social construction of reality 197–200 social contexts of behaviour 177, see also

397

environment social interpretation of disability 37 social justice 54–55 social role valorisation 56–57 Social Trainers Association of Tasmania 244 society disability in xiii effect on policies 298 influence of 4–7 Society for Human Resource Management 220 Somersault 67–69 specialist disability services 275–78 Spinks, Tony 305–7 staff, see professionals; support workers stakeholders, identifying 180 Standard Rules on the Equalization of Opportunities for Persons With Disabilities 18, 29–30, 54 standards, Australian 226 stem cell debate 43–44 stress-related problems 314, 372–73 Stuart’s story (case study) 378–79 Sue and Mary’s story (case study) 283 summative reflection 361 supervised apartments 284, 287 support groups 197 support intensity scales 119 support needs assessment of 121 classification systems and 7–8 individual 282–86 intensive 151–52 orientation towards 234 unmet, levels of 236 support services, see also funding accommodation options 278–80 availability 272–95 for people with intellectual disability 145–70 goals for 154, 161–62 management of 296–323 planning for 110–44 provision of 288–90 sources of 136, 138 support workers, see also learning and development; professionals advocacy by 41 casual employment of 318 continual presence discourages autonomy 97–98 diversity of 243 expertise and effort 166 in individualised planning 162

398

Community disability services

influence on disabled people’s selfimage 199 learned behavioural change 345–46 life satisfaction ratings by 58 occupational health and safety 103–4, 312–16 ratings of important issues for service users 85 relationships with service users 83–84, 258–61 roles and responsibilities 52, 243–44 self-evaluation of 178 stress management strategies 372–73 understanding of ‘choice’ 63–64 use of positive behaviour change 185 supported living 284, 288 supports paradigm 192–93 Susan’s story (case study) 261 Tasmania, euthanasia inquiry 45 Tasmanians With Disabilities 45 teaching, see learning and development teaming, see collaboration technological ‘fixes’ 45, 299, 303 The ethics of limiting life-sustaining treatment 42–43 theories of disability 11–16 Thesing, Avril 33–35 To have an ordinary life 37–38 total quality management, see quality assurance training, see learning and development triangulation in behaviour analysis 183 trust, developing 357, 364 uncertainty in reacting 203–4 understanding, checking 340 unemployment rates for people with disabilities 71 United Kingdom, see Britain United Nations human rights declarations 18, 29–30, 53–54, 219, 248

on prevalence of disability 17 United States, legislation 220 unmet support needs 236, 288–89, 302 VABS 155 validity of assessment 118 values conflicts involving 366 contribution of 252 economic rationalism and 305–7 individualised plans 115 standards for 329 value statements for aged care 249 veil of silence 27–50 verification of performance 328–29 Victorian disability services standards 224 Victorian Risk Framework 99 Vineland Adaptive Behavior Scales 155 violence 36, 313 Virginia (US), behaviour support project 179 vision impairment, economic costs of 72 vision statements 300–301, 325 ‘voices’ for people with disabilities 58 volunteering 208 vulnerability to harm 99 Wee (case study) 113–14 White Australia policy 5 WHO 10–11 Willowbrook (US) 32 women with disabilities, aspirations of 38 work, aspirations for 38 workplace behaviour of support workers 52 workplace for people with disabilities 276 workplaces for people with disabilities 67, 178, 346 World Health Organisation 10–11 World Programme of Action Concerning Disabled Persons 29 writing an individualised plan 124

IAN DEMPSE Y Designed for students of disability studies and practitioners working in community disability services, this textbook addresses the critical issues that affect the support of people with disabilities and the staff of disability support organisations. Community Disability Services provides an essential bridge between research and practice by including extensive discussions of work-based issues, as well as Australian case studies and action learning activities, making it as much a practice manual as a textbook.

K AREN NANKERVIS

edited by

DEMPSE Y NANKERVIS

UNSW PRESS

COMMUNIT Y DISABILIT Y SERVICES

It covers three broad areas: • Disability and modern society • Working with people with disability • Working in disability services. The contributors are respected academics, practitioners, and people who have personal experience of disability and disability support services. While the book addresses issues relevant to people with disabilities in general, its primary focus is on people with developmental disabilities, who make up the majority of disability support users. Chapters address current issues in disability services policy, practice and management, and report current research f indings with a view to informing evidence-based practice.

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Community Disability Services

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