The Aging Networks: A Guide to Programs and Services, 7th Edition

The Aging Networks A Guide to Programs and Services Seventh Edition

Kelly Niles-Yokum, PhD, MPA, is an assistant professor of gerontology at York College of Pennsylvania where she teaches courses in gerontology and sociology. Dr. Niles-Yokum serves as managing editor for Gerontology and Geriatrics Education, the official journal of the Association for Gerontology in Higher Education. Prior to becoming a faculty member at York College she served as the director for the Gerontology Program at the Colleges of Worcester Consortium in Worcester, MA. She holds a doctorate in gerontology from the University of Maryland, Baltimore County, and received a master’s degree in public administration with a specialty in aging policy from Portland State University. Dr. Niles-Yokum’s research interests include rural aging, domestic social policy and aging, end-of-life issues, and empowerment in later life. Donna L. Wagner, PhD, is the founding director of the Center for Productive Aging and the academic gerontology programs at Towson University. Prior to joining Towson, she was the vice president for Research and Development at the National Council on the Aging. Dr. Wagner’s research has focused on the intersection of family and work, community elders, the aging work force, and rural elders. Her research and publications in the area of family caregiving and employment began in the mid-1980s and includes a history of workplace eldercare programs, two national studies on long-distance caregiving, an examination of gender in the workplace as it relates to family caregiving, out-of-pocket spending of family caregivers domestically and within the EU, policy analysis and policy briefs on the topic of employed caregivers and programs that support them. Dr. Wagner is a Fellow of both the Gerontological Society of America and the Association of Gerontology in Higher Education. She is the president of the national board of the Older Womens League (OWL) and the treasurer of the Board of Directors of the National Alliance for Caregiving.

The Aging Networks A Guide to Programs and Services Seventh Edition

Kelly Niles-Yokum, PhD, MPA Donna L. Wagner, PhD

Copyright # 2011 Springer Publishing Company All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Springer Publishing Company, LLC, or authorization through payment of the appropriate fees to the Copyright Clearance Center, Inc., 222 Rosewood Drive, Danvers, MA 01923, 978-750-8400, fax 978-646-8600, [email protected] or on the web at www.copyright.com. Springer Publishing Company, LLC 11 West 42nd Street New York, NY 10036 www.springerpub.com Acquisitions Editor: Sheri W. Sussman Production Editor: Gayle Lee Cover Design: Joseph DePinho Project Manager: Nick Barber Composition: Techset Composition Ltd. ISBN: 978-0-8261-1808-0 E-book ISBN: 978-0-8261-1809-7 10 11 12 13/ 5 4 3 2 1 The author and the publisher of this Work have made every effort to use sources believed to be reliable to provide information that is accurate and compatible with the standards generally accepted at the time of publication. The author and publisher shall not be liable for any special, consequential, or exemplary damages resulting, in whole or in part, from the readers’ use of, or reliance on, the information contained in this book. The publisher has no responsibility for the persistence or accuracy of URLs for external or third-party Internet Web sites referred to in this publication and does not guarantee that any content on such Web sites is, or will remain, accurate or appropriate. Library of Congress Cataloging-in-Publication Data is on file with the publisher.

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This edition is dedicated to our students who are the aging network of the future.

Contents Preface to the Seventh Edition xv

Acknowledgments Introduction

xiii

xvii

SECTION I. OLDER AMERICANS, OLDER AMERICANS ACT, AND THE AGING NETWORK

1. Demographic Characteristics of Older Americans Older Population Size and Growth 4 Health Status 7

3

2. Older Americans Act Legislation and the Evolution of a Network 11 Background 11 The Older Americans Act 11 Objectives of the Older Americans Act: Title I 12 Expansion of the Service Network and Modification of Eligibility 14 Title III: Grants for State and Community Programs on Aging 15 Title IV: Research, Development, and Training 15 Title V: Community Service Senior Employment Programs 16 Title VI: Grants for Native Americans 17 Title VII: Vulnerable Elder Rights Protection Activities 17 Funding for Older Americans Act Programs 17 Service Philosophy of the Aging Network 18 The Aging Network 18 The Challenges of the Aging Network 19 Expert’s Corner—Carol V. O’Shaughnessy 20 Expert’s Corner—Robert Dwyer 22 Discussion Questions 23 SECTION II. PROGRAMS AND SERVICES FOR OLDER AMERICANS

Programs Services

25 26

vii

viii

Contents

3. Information and Referral 29 Background 29 The History of I & R for Aging Services 30 Age-Integrated I & R Versus Aging Network I & R The Eldercare Locator 32 The Web as a Source of Information 33 Critical Thinking Questions 34

32

4. Senior Centers and Adult Day Services 35 Introduction 35 Senior Centers 35 Expert’s Corner—John A. Krout 39 Adult Day Services 41 The Congregate Meal Program 44 History of the Congregate Program 45 Future Issues and Innovation 48 Discussion and Activities 49 5. Income, Retirement, and Employment 51 Introduction 51 Social Security Benefits and Programs 52 Pensions: The Weakening Second Leg of the Stool A Note on the Third Leg of the Stool 56 Working Through Retirement 56 Income Security of Older Americans 57 Expert’s Corner—Ellen Bruce 58 Older Workers and the Laws and Programs That Support Them 60 Expert’s Corner—Barbara Hirshorn 62 Employment Patterns of Older Americans in 2009 Discussion Questions 66 6. Volunteerism and Civic Engagement 69 Background 69 An Array of Volunteer Opportunities 70 Civic Engagement and the Aging Network Discussion Questions 74 7. Physical and Mental Health for Older Adults Introduction 77 Health Status of Older Americans 77

54

65

71 77

Contents ix

The Patient Protection and Affordable Care Act 79 Medicare 80 Paying for Health Care 82 Medicaid 82 Long-Term Care 84 The Program for All-Inclusive Care for Elders (PACE) 84 The Community Living Assistance Services and Supports (CLASS) Act 85 Evidence-Based Health Promotion and Chronic Disease Self-Management 86 The State Health Insurance Assistance Program 87 Mental Health 87 Activities and Questions 95 8. Housing: Aging in Place, Institutional and Congregate Settings, and Alternate Living 101 Introduction 101 Background 102 A History of Aging in Place 103 Public Housing 104 The Section 8 Existing Housing Program 105 Other Federal Housing Initiatives 110 Housing Services 112 Home Repair and Renovation 114 Institutional Settings 115 Extent of Long-Term Care Programs 117 A Variety of Long-Term Care Settings 118 Assisted-Living Residences 119 Expert’s Corner—Darlene Yee-Melichar 122 Discussion Questions 123 Skilled Nursing Facilities 123 Board and Care Homes and Domiciliaries 124 Retirement Communities 126 Existing Housing Certificate Program 130 Activities and Questions 130 9. Support for Older Adults and Caregivers Background 135 What Family Caregivers Need 136

135

x Contents

138

Additional Supportive Services: Home-Delivered Meals The Employed Caregiver 140 The Long-Distance Caregiver 141 Expert’s Corner—Gail G. Hunt 142 Grandparents Raising Grandchildren 144 Expert’s Corner—Linette Kinchen 145 Lifespan Respite Care Program 146 Discussion Questions 147 10. Transportation 149 Introduction 149 Options 150 Models 151 Forms of Transportation for the Elderly 151 Ridership Problems 154 Coordination of Programs 155 Expert’s Corner—Nina Silverstein 159 Discussion Questions 161 Future Trends 161 11. Protecting the Rights and Well-Being of Older Americans: Elder Justice Activities 165 Introduction 165 Elder Abuse 166 Older Americans Act Initiatives 168 The Elder Justice Act 170 Elder Law 171 Expert’s Corner—Jason Frank 172 Discussion Questions 173 Expert’s Corner—Lisa Nerenberg 173 Critical Thinking Question 174 12. Disaster Preparedness and Emergency Assistance Introduction 177 Emergencies and Disasters: Planning and Research Planning for the Future 181 The Role of the Aging Network 182 Expert’s Corner—Wayne Nelson 183 Discussion Questions 185

177 178

Contents xi

13. Education and Lifelong Learning 187 Introduction 187 Community Colleges 187 College and University Programs 188 Partnerships: Success Realized 188 The Future of Educational Programs for Older Adults

190

SECTION III. OUR AGING FUTURE

14. The Nexus of Policy, Program, and Practice Introduction 193 Creativity and Aging 194 Innovative Programming 194 Diversity 198 Spirituality and Religion 203 Advocacy 206 Activities and Questions 212 15. Challenges for the Aging Network 215 The Challenge of a Growing Aging Population Increasing Diversity 216 Changing Cohorts 218 Professionalism of the Aging Network 218 The Long-Term Care Challenge 219 Innovation in the Aging Network 220 Appendix A: State Units on Aging (SUAs)

193

216

225

Appendix B: Administration on Aging Regional Support Centers Appendix C: National Aging Network Organizations and Resources Index

235

229 231

Preface to the Seventh Edition The Seventh Edition of The Aging Networks has been revised as a three-part guide to not only provide information about the programs and services of the networks developed to support older Americans but also to challenge readers to think critically about the past while we march toward the future. Section I provides an in-depth array of demographic characteristics, examines the federal legislation authorizing programs and services for the aged, including the development of programs and services. In Section II, readers are taken through the complex details on major programs and services in aging, ranging from information and referral, to employment, to income maintenance programs. Section III explores issues that are critical to all of our lives as we age, including creativity and aging; diversity; religion and spirituality; and advocacy. Section III concludes with a look at the challenges facing the aging network as we continue towards a future of increasing diversity, changing cohorts, long-term care challenges, and an evolving aging network. Many of the chapters include an Expert’s Corner which is an opportunity for readers to gain insight on a particular topic from an expert. Our hope is that the addition of these expert opinions and ideas will challenge you and engage you in a way that goes beyond basic textbook narrative. Many experts have provided specific challenges and discussion questions to help you begin, or continue, to think critically and more in-depth about the material. Revised and updated to include the most current information concerning the aging network and older Americans, this Seventh Edition provides students and practitioners with a detailed overview of federal, state, and local programs and services for older consumers. As the aging population expands and changes, the challenges to the aging network shifts in both focus and mission. The text examines these new and emerging needs and interests of older adults and what measures are being taken to address them, including civic engagement, caregiving, and programs for older workers. An ideal source for students and educators in a variety of disciplines—from gerontology to nursing to public health—this guide offers a historical perspective on the evolution of programs and services for older Americans and the philosophical changes that have occurred as the cohort of older Americans have changed over time. It also cites a xiii

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Preface to the Seventh Edition

wealth of important changes in legislation, healthcare, lifestyle, and other areas concerning older adults that have occurred since the publication of the previous edition. This guide covers various aspects of each program or service, including: B B B B B B

Historical evolution of the aging network and its approach to a changing population Relevant legislation (enacted and proposed) Current and newly emerging issues Challenges to the aging network as seen by experts in the field on key topics New sources and relevant websites Discussion questions that engage students and professionals in contemporary issues at the forefront of aging services.

Acknowledgments We are indebted to Donald E. Gelfand for his original vision and contribution to previous editions of The Aging Network. We would like to acknowledge the following individuals for their contributions to this edition: C. Joanne Grabinski for laying the groundwork of the book and for fostering the professionalism of the aging network through her careers in aging book. Kaitlyn Pratt, our student assistant from York College of PA, for her hard work throughout the process. Sheri W. Sussman for her patience, guidance, and support. Valerie Cook of the Administration on Aging, Office of Evaluation, for providing us with data on the Older Americans Act aging network programs. Thanks to our experts for taking time out of their busy schedules to share their thoughts with us.

xv

Introduction In order to fully understand the current status and future development of programs and services created for older Americans it is necessary to review the historical steps that have brought us to where we are now—the only country in the world that has publicly funded age entitlement programs and services. While we have come a long way, there’s no doubt that we have a long way to go. The Administration on Aging (AoA) provides a historical timeline from 1920 to 2006. Here are some of the highlights: 1920 1935 1950 1952 1956

1958 1960

1961 1965

1965

Enactment of the Civil Service Retirement Act, which creates a retirement system for most government employees Enactment of the Social Security Act to provide Old Age Assistance and Older Age Survivors Insurance Convening of the first National Conference on Aging by President Truman, with sponsorship of the Federal Security Agency Appropriation through the Social Security Act for the first social service programs for older persons Establishment of Special Staff on Aging to coordinate responsibilities for aging within the Office of the Secretary of Health, Education, and Welfare Introduction of Congressional legislation for a White House Conference on Aging Changes to Social Security Administration standards: (1) eliminated age 50 as the minimum qualifying age for Social Security Administration disability benefits, (2) liberalized the retirement test, and (3) liberalized the requirements for fully insured status Convening of the first White House Conference on Aging (WHCOA), Washington, DC Enactment of the Older Americans Act (OAA) to establish the Administration on Aging (AoA) within the Department of Health, Education, and Welfare (HEW) and create the State Units on Aging (SUA) Appointment of William Bechill as the first Commissioner on Aging

xvii

xviii

1965 1965 1967 1971 1972 1973 1973

1973 1974

1974 1974

1974

1974 1978 1981 1981

1987

Introduction

Establishment of Medicare (Title XVII of the Social Security Act) as a health insurance program for older adults Establishment of Medicaid (Title XIX of the Social Security Act) for lower-income persons of all ages Enactment of the Age Discrimination Act Convening of the second WHCOA, Washington, DC Creation of OAA Title VII authorizing the funding of a national nutritional program for older adults Establishment of the Area Agencies on Aging (AAA) through the Older Americans Act Addition of Title V to (1) authorize grants to local community agencies for the creation of multipurpose senior centers, and (2) create the Community Service Employment grant program, administered by the Department of Labor to employ low-income persons aged 55 and older Enactment of the Comprehensive Employment Training Act, which included training/employment programs for older adults Authorization of grants to states for social services (e.g., adult day care, homemaker, transportation, nutrition) through Title XX of the Social Security Amendments Amendment of OAA added transportation to Title III model projects Enactment of the Housing and Community Development Act, with provisions for low-income housing for the elderly and persons with disabilities Creation of the National Institute on Aging to conduct research and training related to (1) the aging process and (2) diseases and problems of the aging population Expansion of Title V—Farm and Rural Housing Program of 1949, to add rural elders as a target group Amendment to OAA requiring the establishment of long-term care ombudsman programs in each state Convening of the third WHCOA, Washington, DC Reauthorization of OAA, with emphasis on assistance and supportive services to allow older persons to remain independent in their own homes Enactment of the Omnibus Budget Reconciliation Act (OBRA) to provide nursing home reform

Introduction xix

1987

1990 1992

1992

1992 1993 1995 1999 2000 2006

2010

Reauthorization of OAA added distinct authorization and appropriations for the following services: (1) in-home services for frail elders, (2) long-term care ombudsman, (3) assistance for special needs, (4) health education and promotion, (5) prevention of elder abuse, neglect, and exploitation, and (6) outreach services for older persons who are eligible for food stamps, Medicaid, and Supplemental Security Income (SSI) Enactment of the Age Discrimination in Employment Act (ADEA) made it illegal for employers to discriminate against older workers Reauthorization of OAA placed increased focus on caregivers, intergenerational programs and services, and protection of elder rights. Also called for 1995 WHCOA. Elevation of the position of Commissioner on Aging to the status of Assistant Secretary for Aging in the Department of Health and Human Services (DHHS) Amendment of OAA added new title VII: Vulnerable Elder Rights Activities Swearing in of Fernando Torres-Gil as the first Assistant Secretary of Aging Convening of the fourth WCHOA, Washington, DC Proclamation of 1999 as the International Year of Older Persons: A Society of All Ages Amendment of OAA reauthorized OAA for five years and established the National Family Caregivers Support Program Reauthorization of OAA included long-term care planning and consumer-directed services to older adults at risk for institutional placement. OAA reauthorized for 5 years. The Patient Protection and Affordable Care Act (PPACA) provides affordable and accessible long-term care, or long-term services and supports to older adults. The PPACA made way for the Community Living Assistance Services and Supports (CLASS) program.

Another set of factors contributing to the growth of programs and services for older persons was the increase in the numbers of researchers, educators, and practitioners with interests in aging. The earliest “gerontologists” were primarily researchers from the biological sciences who were later joined by researchers from the psychological and social sciences.

xx Introduction

Aging Organizations Timeline 1942 1945 1946 1950 1954 1974 1985 1998

American Geriatrics Society (AGS) established The Gerontological Society of America (GSA) established to “promote the scientific study of aging.” GSA holds its first Annual Scientific Meeting in New York, NY National Committee on Aging is formed and later renamed the National Council on the Aging (NCOA) in 1960 Western Gerontological Society (WGS) formed Association for Gerontology in Higher Education (AGHE) established WGS becomes the American Society on Aging (ASA) AGHE partners with GSA as the Educational Unit

Coinciding with increasing interest on aging research among academics was the advent of gerontology and geriatric education programs in institutions of higher education. In the 1970s, the federal government made monies available to colleges and universities for research on aging and related curriculum (Title IV, OAA). The evolution of the discipline of gerontology has brought us from humble beginnings to where we are today, with a myriad of higher education offerings from minors in gerontology to doctoral programs. As the field of gerontology grows and the population of older adults continues to increase, the need for an educated workforce becomes a critical factor in our ability to provide a good old age for everyone in our society. We have made great strides in our programs, services, and educational opportunities for those interested in the aging of our society. In order to continue to add to our successes, we must also make room for those who have a background in gerontology, whether it’s in the classroom, on the front lines, or developing policies and programs. That is our challenge.

EXPERT’S CORNER Kate de Medeiros, PhD Research Scientist University of Maryland, Baltimore County In my opinion the most important thing that the aging network can do for the future is to integrate the objectivity of science with the longer perspective of history and the interpretative wisdom of the humanities.

Introduction xxi

We might address this by considering the following questions: B

B

B

How can policy and practice continue to support the health care and social needs of older adults in a way that recognizes heterogeneity of individuals, despite the societal biases of various groups (including the elderly themselves). How can gerontological education at all levels—from elementary schools through doctoral programs—embrace the rich and complex history “old age” throughout the centuries to help rediscover and perhaps even redefine what it means to grow old. How can we move forward with scientific advances in gerontology research without privileging complex statistical models over individual experience?

I

Older Americans, Older Americans Act, and the Aging Network

O

lder Americans are increasingly diverse in ethnic background, religion, income, and education. Chapter 1 presents relevant statistical data on the older population as an important background to the planning and development of programs. With this groundwork laid, Chapter 2 provides an in-depth examination of the Older Americans Act and the federal legislation. The complexity of existing legislation will be quickly evident, but an understanding of titles and acts discussed is imperative for students and practitioners interested in the field of aging.

1

1

Demographic Characteristics of Older Americans Older Americans, defined as those individuals aged 65 years and older, represented 12.9% of the U.S. population in 2008. According to the U.S. Census Bureau (2010) there are 38.9 million people aged 65 years or older, an increase of 4.5 million, or 13.0%, since 1998. Those aged 85 years or older are part of the fastest growing segment of the aging population. This oldest-old group is expected to increase from 4.2 million in 2000 to 5.7 million in 2010 (a 36% increase). Older individuals are expected to account for 20% of the American population by 2020 as the “baby boomers” enter their later years beginning in 2011 (Administration on Aging [AoA], 2009). As we begin to feel the impact of aging of the baby boom generation (those born between 1946 and 1964), the questions about how to “handle” the graying of our society have become more complex. While this book is about the aging networks and the complex set of programs and services formulated and implemented over many decades, it is also about how to think differently about these programs, services, and the environment in which they exist—past, present, and future. Pruchno and Smyer (2007) remind us that it is critical to include an ethical consideration as well. The ethical issues of “autonomy, responsibility, and distributive justice— resonate in the individual, family, and policy decisions faced by an aging society” (p. 5). To adequately understand the purpose and rationale for programs and services for older Americans, it is first necessary to gain some understanding of what the older American population looks like currently, along with some demographic characterization of the older American population at significant times in the past (e.g., in 1965 when the Older American Act [OAA] was enacted) and into the future, through estimates and projections 3

4 Section I. Older Americans, Older Americans Act, and the Aging Network

of the elderly population of the United States. Unless otherwise specified, terms such as older adults, elders, older Americans, older population, and elderly population will refer to persons who are 65 years of age and older. Demographic data presented will represent the most recent information and statistics available during the preparation of this book. A key source of demographic information about older adults and the elderly population of the United States is the annual Profile of Older Americans developed originally by Donald Fowles and currently by Saadia Greenberg at the AoA. Primary data sources for this profile are the Census Bureau, the National Center on Health Statistics (NCHS), and the Bureau of Labor Statistics (BLS). While the most recent data available are presented, some databases are not updated yearly and time-consuming analysis of such large data sets may delay the release of more current information (e.g., the 2008 profile released a few months into 2009 presents findings based on the most recent data available in 2007 or earlier).

OLDER POPULATION SIZE AND GROWTH As of 2008, there were 38.9 million older adults (65+) in the United States. This is an increase of 4.5 million, or a 13% increase, since 1998 (AoA, 2009). This accounts for 12.6% of the total population or approximately one in every eight Americans. Growth in the size of the older population is reflected in the actual and projected numbers and percentages in Exhibit 1.1. EXHIBIT 1.1

Growth in the Size of the Older Population

1900

3.1 million (actual)

1920

4.9 million (actual)

1940

9.0 million (actual)

1960

16.6 million (actual)

1980

25.5 million (actual)

1990

31.2 million (actual)

2000

35.0 million (actual)

2010

40.2 million (projected)

2020

54.8 million (projected)

2030

72.1 million (projected)

4.1% of the total U.S. population

19.3% of the total U.S. population

U.S. Census Bureau. (2009). A profile of older Americans. Washington, DC. Retrieved March 9, 2010, from http://www.aoa.gov/AoAroot/Aging_Statistics/Profile/index.aspx

Chapter 1. Demographic Characteristics of Older Americans

5

In addition to increases in the total older population of the United States, it is now important to consider increases in the actual and projected size of the age subgroups in Exhibit 1.2. EXHIBIT 1.2

Growth in the Size of the Older Population by Age Subgoup

65– 74 age group

2007

19.4 million (actual)

75– 84 age group

2007

13.0 million (actual)

17 times more than in 1990

85+ age group

2007

5.5 million (actual)

45 times more than in 1990

2010

5.8 million (projected)

2020

6.6 million (projected)

1990

37,306 (actual)

2007

80,771 (actual)

Centenarians

8.8 times more than in 1900

117% increase since 1990

U.S. Census Bureau. (2009). A profile of older Americans. Washington, DC. Retrieved March 9, 2010, from http://www.aoa.gov/AoAroot/Aging_Statistics/Profile/index.aspx

Life Expectancy Life expectancy for individuals born in 2003 reached an all-time high of 77.3 years. White men born in 2003 could expect to live 75.4 years on average and White women 80.5 years. Although the gap in life expectancy between women and men has declined since the 1979 peak of 7.8 years, the greater life expectancy of women is expected to last into the 21st century. These life expectancy figures hide some important intergroup differences. Minority elderly still have lower life expectancy rates than White elderly: Black males born in 2003 have a life expectancy 6.2 years shorter than White males born that year, and Black females have a 4.7-year shorter life expectancy than their White counterparts (National Center for Health Statistics, 2005). Perhaps more important than life expectancy at birth is the life expectancy of individuals who reach the ages of 65 and 85. An individual who reached age 65 in 2002 had an average life expectancy of an additional 18.2 years: 19.5 years for females and 16.6 years for males (AoA, 2005). At age 85, the average life expectancy for men was 5.2 years and for women 6.8 years (AoA, 2003). The Oldest Old There were already 12 million persons over the age of 75 in the mid-1980s. The over-85 population will increase from approximately 3.6 million in 1995 to 6.1 million in 2010 and 9.6 million by 2030. The result of this increase

6 Section I. Older Americans, Older Americans Act, and the Aging Network

is that the population over the age of 85 will have grown from 1.4% of the population in 1995 to 5% of the population in 2050 (Federal Agency Forum on Aging-Related Statistics, 2004).

Racial and Ethnic Diversity The proportion of African-American and Latino elderly in the American population will continue to grow during the 21st century. As a result of the “aging” of each of these groups, their median age will continue to rise. In 2003, the median age for Whites was 37.3 years; Blacks, 30.6 years; American Indian/Alaskan Natives, 28.9 years; Asians, 33.7 years; and Latinos, 26.7 years (U.S. Census Bureau, 2003). By 2030, it is expected that more than one-quarter of older Americans will be from minority backgrounds (AoA, 2005). In 2003, 12.5% of the White population in the United States was over the age of 65. Among other racial and ethnic populations there were smaller proportions of older people: 8.1% among the Black population, 6.2% among Native Americans and Alaskan natives, 8.3% among Asians, 5.5% among Native Hawaiians and Pacific Islanders, and 5.2% among Latinos (U.S. Census Bureau, 2003).

The Importance of Cultural Backgrounds Although many senior advocacy groups speak out against stereotyping, there is a continued tendency to discuss the elderly as a homogeneous group whose values and beliefs are defined by their age. In reality, the cultural backgrounds among the present generation of individuals older than 60 years are enormously varied. The U.S. census counted 30 million individuals who were born outside the United States. Two demographic facts about this population are important for the field of aging: (1) the median age of foreign-born individuals is above 52 and (2) the foreign-born population is very diverse. It includes substantial numbers of Latinos from Central and South America; Asians from Korea, China, Cambodia, India, Laos, and Vietnam; and Haitians and Caribbean Islanders (Gelfand, 2003). Differences in cultural attitudes toward aging and the utilization of services, as well as lack of fluency in English among foreign-born elderly, may create problems for providers attempting to implement aging programs.

Chapter 1. Demographic Characteristics of Older Americans

7

HEALTH STATUS The major health problems of older persons are not acute illnesses, but chronic conditions that affect their functioning. Problems in functioning are usually assessed on the basis of the relative inability of the individual to carry out basic Activities of Daily Living (ADLs: bathing, dressing, feeding oneself, reaching and using the toilet, and transferring between bed and chair). The Instrumental Activities of Daily Living (IADLs) include the ability to perform household tasks such as meal preparation, housecleaning, money management, shopping, getting around in the community, and using the telephone. The proportion of older persons who cannot perform the ADLs is not increasing. In 1996 Siegel projected that the number of disabled older persons would triple by 2040 (Siegel, 1996). The commonness of disability is illustrated by the fact that in 1997, more than half of the older American population reported having at least one physical or nonphysical disability (AoA, 2005).

Chronic Conditions Chronic conditions are the cause of a large proportion of problems in functioning among older persons. Among the most common chronic conditions are hypertension (49%), arthritis (36%), heart disease (31%), sinusitis (15.1%), and diabetes (15%) (AoA, 2003). Beyond the pain associated with a condition such as arthritis, the impact on older persons may include difficulty in feeding themselves, cooking, taking medicines, or even walking. The other conditions listed above can also have a major impact on the daily lives and activities of older people. As the American population continues to age, the prevalence of other diseases may dramatically increase.

Living Arrangements There are now 1.5 million nursing home beds in the United States, but the over-65 population in nursing homes still represents less than 5% of the total number of older American adults. One of the most striking statistics of recent years is the increasing proportion of older individuals who are maintaining their own households. The percentage of older persons living alone, however, varies by age and gender. Most significantly, in

8 Section I. Older Americans, Older Americans Act, and the Aging Network

2007, 73% of older men lived with their spouses while almost half (42%) of women over the age of 75 lived with their spouses (Federal Interagency Forum on Aging-Related Statistics, 2008). Additionally, about 56% of all noninstitutionalized older persons in 2007 lived alone (19 million men, 38.6 million women). There are also variations by race and ethnicity in the proportions of older persons who live alone. Overall, non-Hispanic White and Black women were most likely to be living alone in 2007. The number of elderly living alone also reflects the dispersal of families over a wide area. Poorer families consistently live closer to their elderly relatives. It has also been shown that family income is positively related to the use of long-term care residences for elderly parents. Poorer families who cannot afford nursing home care are thus more likely to have an older family member living with them. Rural states, such as Iowa, Arkansas, and Missouri, continue to have high proportions of the elderly. In these states, younger families have moved to more urbanized regions and have not been replaced by any significant numbers of new residents. Although a proportion of the elderly have joined in the migration to the suburbs, many suburban residents have grown old in their neighborhoods. As a result of the “aging in place” phenomenon, half of the elderly were living in the suburbs in 2002 as compared to one-third in 1960. Almost one-quarter (23%) of older persons lived in nonmetropolitan areas (AoA, 2003). As research continues to show, older people tend to remain in communities where they have lived for a long period of time. Compared with 48% of younger individuals, only 23% of older persons moved between 1995 and 2002.

Education The minimal educational background of many present-day elderly also created problems for service providers, who must understand that many of them have limited verbal, writing, and reading skills. Programs that involve extensive reading and discussion may thus not be practical for many elderly. At a more basic level, many elderly will have difficulty understanding and following instructions on medication and may utilize their medication improperly. As the differentials in education background between the elderly and the general population become less distinct, these problems will abate. The improvement in educational background

Chapter 1. Demographic Characteristics of Older Americans

9

is already evident if data for the period from 1970 to 2007 are examined. During this period, the percentage of persons over the age of 65 who had complemented high school rose from 28% to 76%. There are still substantial differences in the educational backgrounds of White and minority elderly. Among older Whites, 81% had graduated from high school in 2007, whereas only 58% of African-American elderly and 42% of Latinos had high school diplomas (Federal Interagency Forum on AgingRelated Statistics, 2007). The good news here is that older adults are more educated than ever before and will likely continue to be more highly educated. This educational attainment has some important spillover effects for the aging network of services. The more education the individual has, the higher the expectations. Older adults in the future will have an increasing level of expectation for support services and resources as they age.

Employment and Income Recent changes in American work patterns have not been of major benefit to many American and foreign-born elderly. The inability of these older adults to obtain higher education during the early 1900s relegated them to careers as blue-collar workers. Men and women whose work has centered around low-paying jobs have meager financial resources for their old age. Low wages have meant low Social Security benefits and inadequate or nonexistent pensions. Part-time and intermittent work has prevented many women from accumulating enough “quarters” to qualify for Social Security. Many of the older adults being served by present-day programs have limited ability to pay for costly services. Income maintenance programs such as Supplemental Security Income (SSI), Medicare, food stamps, and housing subsidies have helped to raise the income floor of the older adult. In 2003, only 10.2% of individuals over the age of 65 fell below the federal poverty level, but this figure does not adequately convey the income problems faced by minority older adults. Although less than 10% of White older adults (8.8%) had less than poverty level income in 2003, the comparable figures were 23.7% among Blacks, 14.3% among Asians, and 19.5% among Latinos. In 2005, the federal poverty level was $9,750 for one person and $12,830 for two persons. For 38% of Black retirees and 40% of Latino retirees, Social Security is their only source of income. In contrast, only 18% of White retirees depend entirely on Social Security for all of their income (Andrews, 2005).

10 Section I. Older Americans, Older Americans Act, and the Aging Network

REFERENCES Administration on Aging (AoA). (2003). A profile of older Americans. Washington, DC: Administration on Aging. Administration on Aging (AoA). (2005). A profile of older Americans. Washington, DC: Administration on Aging. Administration on Aging (AoA). (2009). A profile of older Americans. Washington, DC: Administration on Aging. Andrews, E. (2005, March 20). G.O.P. Courts Blacks and Hispanics on Social Security. The New York Times, p. A15. Federal Interagency Forum on Aging-Related Statistics. (2004). Older Americans: Key indicators of well-being. Federal Interagency Forum on Aging-Related Statistics. Washington, DC: U.S. Government Printing Office. Federal Interagency Forum on Aging-Related Statistics. (2007). Older Americans: Key indicators of well-being. Federal Interagency Forum on Aging-Related Statistics. Washington, DC: U.S. Government Printing Office. Federal Interagency Forum on Aging-Related Statistics. (2008). Older Americans: Key indicators of well-being. Federal Interagency Forum on Aging-Related Statistics. Washington, DC: U.S. Government Printing Office. Gelfand, D. E. (2003). Aging and ethnicity: Knowledge & services. New York: Springer Publishing. National Center for Health Statistics. (2005). 2005 Fact Sheet – Life Expectancy Hits Record High. Retrieved May 28, 2010, from http://www.cdc.gov/nchs/ pressroom/05facts/lifeexpectancy.htm Pruchno, R. A., & Smyer, M. A. (2007). Challenges of an aging society. Baltimore, MD: Johns Hopkins University Press. Siegel, J. (1996). Aging in the 21st century. Washington, DC: National Aging Information Center. U.S. Census Bureau. (2003). Selected age groups for the population by race and Hispanic origin for the U.S.: July 1, 2003. Retrieved March 9, 2010, from http://www. census.gov/popest/archives/2000s/vintage_2003/2003s.html U.S. Census Bureau. (2010). Percent of the total population who are 65 years and over. Retrieved October 3, 2010, from http://factfinder.census.gov/

2

Older Americans Act Legislation and the Evolution of a Network BACKGROUND In 1965, the Congress passed three important pieces of legislation that, over time, would shape and define the nation’s approach to its growing older population. Medicare was enacted to ensure that older adults have the health care they need and Medicaid was passed to provide access to health care for low-income Americans. And, the Older Americans Act (OAA) became the law of the land. The OAA has, in more than 40 years since its passage, been largely responsible for the development of the aging network of services and the structure that is in place today to provide home and community-based services to older adults in their communities. This chapter will briefly outline the history and structure of the OAA, review the aging network of services and its development, and introduce some of the current challenges facing the aging network.

THE OLDER AMERICANS ACT The OAA was enacted, in part, as a result of the first White House Conference on Aging, which took place in 1961. The White House Conference on Aging was convened to bring together advocates and stakeholders to discuss the issues facing older Americans and to make recommendations for national policy that might address these issues. The Act has been reauthorized by Congress several times since its initial passage and will

11

12 Section I. Older Americans, Older Americans Act, and the Aging Network

be up for its 14th reauthorization in 2011. As this book is being prepared (2010), the Administration on Aging (AoA) is conducting listening sessions and soliciting comments on this reauthorization. The AoA, an agency of the Department of Health and Human Services, was created by the 1965 OAA and is responsible for the programs and services funded by the OAA. The purpose of the OAA is defined by its objectives. These objectives outline a policy perspective for the well-being of older Americans. These objectives and the Act also established a new role for the federal and state governments in assuring the well-being of older adults (O’Shaughnessy, 2008a).

OBJECTIVES OF THE OLDER AMERICANS ACT: TITLE I 1. An adequate income in retirement in accordance with the American standard of living. 2. The best possible physical and mental health which science can make available and without regard to economic status. 3. Obtaining and maintaining suitable housing, independently selected, designed, and located with reference to special needs and available at costs which older citizens can afford. 4. Full restorative services for those who require institutional care, and a comprehensive array of community-based, long-term care services adequate to appropriately sustain older people in their communities and in their homes, including support to family members and other persons providing voluntary care to older individuals in need of longterm care services. 5. Opportunity for employment with no discriminatory personnel practices because of age. 6. Retirement in health, honor, and dignity—after years of contribution to the economy. 7. Participating in and contributing to meaningful activity within the widest range of civic, cultural, educational and training, and recreational opportunities. 8. Efficient community services, including access to low-cost transportation, which provide a choice in supported living arrangements and social assistance in a coordinated manner and which are readily

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available when needed, with emphasis on maintaining a continuum of care for vulnerable older individuals. 9. Immediate benefit from proven research knowledge which can sustain and improve health and happiness. 10. Freedom, independence, and the free exercise of individual initiative in planning and managing their own lives, full participation in the planning and operation of community-based services and programs provided for their benefit, and protection against abuse, neglect, and exploitation. (42 U.S.C. 3001) These objectives articulate a lofty policy goal for the benefit of older Americans. The other titles of the Act address specific policy initiatives and programs that address the policy intent of the Act. Title II sets out the language required to establish the AoA, which is under the supervision of the Assistant Secretary for Aging who is appointed by the President and confirmed by the Senate. That AoA has, since its inception, developed and organized the aging network (see Figure 2.1) that consists of State Units on Aging, the local Area Agency on Aging (AAA) network, and thousands of service providers who work directly with older adults. Title II also establishes the National Eldercare Locator Service to provide information about aging services.

56 State Agencies

655 Area Agencies

Service Providers

Access to Services

Nutrition

Outreach, Information Congregate and and Assistance Home-Delivered Meals Regarding Service Nutrition Counseling Benefits and Education Care Management Transportation

Home & CommunityBased Long-Term Care

Disease Prevention & Health Promotion

Vulnerable Elder Rights Protection

Home Care, Chore, Personal Care

Examples: Physical Fitness

Long-Term Care Ombudsman

Adult Day Care

Nutrition Counseling

Family Caregiver Support

Immunizations

Prevention of Elder Abuse, Neglect, and Exploitation Legal Assistance

FIGURE 2.1 The aging network. O’Shaughnessy (2008b)

14 Section I. Older Americans, Older Americans Act, and the Aging Network

Since 1965, there have been several amendments and changes to the OAA that have both expanded the service network and modified eligibility for services. We focus on some of the more important changes in the following section.

EXPANSION OF THE SERVICE NETWORK AND MODIFICATION OF ELIGIBILITY 1973—The 1973 amendments provided the authorization to establish the AAA network to plan, monitor, and coordinate services at the local level. There are currently 655 AAAs throughout the nation. The 1973 amendments also reduced the age of entitlement for OAA services from 65 to 60 years of age. 1978—The home-delivered meals program was begun and the Long-Term Care Ombudsman Program became a requirement for all states. The AoA was charged with being the advocate across federal agencies for older Americans. 1987—Title III priorities were set for access services, in-home programs, and legal services. 1992—A separate title (Title VII) was set up for all “elder rights protection activities,” including the Long-Term Care Ombudsman Program and a program to prevent elder abuse and exploitation. 2000—The National Family Caregiving Support Program (NFCSP) was started. The initiation of this program expanded the focus of OAA activities and the service population to include younger informal caregivers for an older person. 2006—The Congress authorized the AoA to begin disease prevention and health promotion programs to serve elders with chronic disease. The amendments also funded the “Choices for Independence” initiative and, among other things, established the Aging and Disability Resource Center (ADRC) in partnership with the Center for Medicare and Medicaid Services (AoA, 2007). 2009—Congress funded the Lifespan Respite Act that had been passed in 2006 as part of the Title XXIX of Public Health Service Act. AoA selects 12 states for funding in 2009. These states are expanding their lifespan respite services, working to recruit and train respite workers, and providing caregiver training. Family Caregiver Alliance and partners were selected to develop the Life Span Respite Resource Center to support all lifespan respite activities nationwide.

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TITLE III: GRANTS FOR STATE AND COMMUNITY PROGRAMS ON AGING Title III is the title that is used to fund and design state and community programs on aging. This title outlines the types of services that should be provided at the local level in order to develop “comprehensive and coordinated services” enabling older adults to maintain “maximum independence” (Sec. 301). There are four service areas that are funded through Title III—Supportive services, nutrition, family caregiver services, and the disease prevention and health promotion services. The supportive services include an array of services designed to assist older Americans to remain independent in the community and to avoid unnecessary institutionalization. Supportive services include access services such as information and referral assistance, care management, and transportation. Home- and community-based services such as chore services, personal care services, and adult day services are also included in the supportive service array of assistance. Nutrition services available include congregate meal programs and home-delivered meal programs that serve elders who are limited in their ability to attend congregate programs. As the number of frail elders has increased, the demand for home-delivered meals has outpaced that of congregate meals. The family caregiver services included in Title III are specifically authorized through the NFCSP and include special programs for family caregivers, care management, and educational programming to support family caregivers, respite services, and adult day services. The newest Title III program, the disease prevention and health promotion services, is designed to foster health in older adults through nutrition counseling, fitness, education, and health screening, as well as other initiatives identified by the state and local community. The state Departments on Aging are required to pass along all Title III funds allocated to the AAAs. The use of the Title III funds is determined by plans developed at the AAA level and the state level. In 2008, Title III funds accounted for 2/3 of all of the OAA funds (O’Shaughnessy, 2008a).

TITLE IV: RESEARCH, DEVELOPMENT, AND TRAINING Title IV of the OAA has been the primary funding mechanism for grants that have supported research about the development of the aging network and the needs of older Americans; funding to try new approaches to service delivery and training. Title IV funds were invested in the

16 Section I. Older Americans, Older Americans Act, and the Aging Network

development of the gerontological workforce from the first cohort of trained researchers and educators in gerontology in the 1970s to training in special skill sets such as mental health interventions among direct service workers. The funds invested in research led to the development of centers of excellence in gerontology around the country, many of which are still operating today at the University of Southern California, Duke University, Portland State University, and the University of Michigan to name a few. Before the focus of Title IV was changed to one of independence, health, and longevity, it was focused on education and training (Sec. 410). “. . . to improve the quality of service and to help meet critical shortages of adequately trained personnel for programs in the field of aging . . .” and included funding for “Multipurpose Centers of Gerontology” to develop training, to conduct research, and to “. . . incorporate information on aging into the teaching of biological, behavioral, and social sciences at colleges and university.” (Sec. 412). Title IV funds were used to evaluate the development of new innovations in the aging network of services such as the AAA network, the future of senior centers, adult day programs, and more recently, the consumer-directed programs that allow older persons to control their own service provider and environment. Title IV now funds the ADRC in 43 states, initiatives to assist those at risk for institutionalization to remain in the community, and evidencebased disease prevention and management projects. Chronic Disease Self Management Programs (CDSMP) are currently underway across the county managed by state units on aging and implemented by local partnerships between AAAs and aging service providers.

TITLE V: COMMUNITY SERVICE SENIOR EMPLOYMENT PROGRAMS Title V funds senior employment programs for low-income older adults. This Title is administered by the Department of Labor and is managed by national organizations. Unemployed persons 55 years of age and older who are in the low-income group (125% of the federal poverty level) are eligible to receive training and subsidized employment opportunities through the programs. The Senior Community Service Employment Program (SCSEP) opportunities are, for many adults, an ongoing essential income source and for others, a stepping stone to unsubsidized employment.

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TITLE VI: GRANTS FOR NATIVE AMERICANS This Title authorizes funds for Native American tribes to develop social and nutritional services for the aged. In addition to Indian tribal organizations, Native Hawaiian organizations are also covered under this program. This set aside for tribes and indigenous organizations recognizes the autonomy of these groups, as well as the special needs of the elders that are best addressed within their cultural environment.

TITLE VII: VULNERABLE ELDER RIGHTS PROTECTION ACTIVITIES Title VII has three major components: The State Long-Term Care Ombudsman Program; Programs for Prevention of Elder Abuse, Neglect, and Exploitation; and State Legal Assistance Development. The set aside of a separate Title for all elder rights protection programs demonstrates a commitment to addressing the very serious issues associated with elder abuse, neglect, and exploitation, as well as the protection of the rights of older Americans. The recently signed HR 3590 Bill on health care also contains the Elder Justice Act, an act that dramatically increases the funding for research, ombudsman programs, and adult protective services.

FUNDING FOR OLDER AMERICANS ACT PROGRAMS The OAA is funded annually by Congress; in Fiscal Year (FY) 2009, the total funding allocated to OAA was $2.063 billion. Title V, the Department of Labor– managed employment program received $572 million. Title III, the state and community services section of the Act received $1.346 billion or 65% of the total allocation. Title VII, the section that funds the prevention of elder abuse and the Long-Term Care Ombudsman program only received $20 million in 2009. The funds marked for the state and local aging network are, for the most part, allocated on a per capita basis with funding provided to the State Unit on Aging and redistributed to the AAAs. Through the amendments to the OAA, Congress has expanded the groups to which the programs must be targeted. Resources of the Act must be targeted to those who are most vulnerable because of social and economic need. Specific target groups identified by Congress include

18 Section I. Older Americans, Older Americans Act, and the Aging Network

low-income, minority, older adults in rural areas, those at risk for institutionalization, and those with limited English proficiency. Because OAA programs are entitlements based on age, it is not legal to use means testing as a targeting strategy. However, since the 2000 amendments, programs receiving OAA funding can request that consumers do cost sharing of a service. In addition, they can ask consumers about their income but cannot do formal means testing of income or assets. Providers receiving OAA funds also must ensure that their cost-sharing policies do not dissuade elders from seeking help.

SERVICE PHILOSOPHY OF THE AGING NETWORK The objectives of the OAA in Title I set the stage for a service philosophy that continues today, 45 years after its enactment. The Aging Network is dedicated to providing assistance and support to older adults and their informal caregivers that allows them to remain in the community and avoid unnecessary institutionalization. If an older adult requires skilled nursing care in a nursing home, he or she has the right to full restorative care services and to return to the community when able to live independently again. Although not all areas of the country have the full range of services needed to achieve that goal, each area strives to develop and maintain a continuum of services to allow individuals the freedom of choice about where they live, how they live, and what they do. The OAA and the rules of law support autonomy and independence for persons of advanced age. Older Americans are assumed to be capable of both managing their lives and their decision-making independently. Services are provided with OAA funding on the basis of age. Although many services provided by the aging network today request a donation from consumers, this donation is not required for participation in a meal program or activity. All OAA services, with the exception of the Title V subsidized employment program, are entitlements based on age only. THE AGING NETWORK The aging network includes a wide variety of professionals working with older adults. While the OAA was largely responsible for developing the aging network, today there are many funding streams and agencies involved. Other federal agencies such as the Department of Housing and

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Urban Development (HUD), the National Institutes on Health (including National Institute on Aging) and the National Institute on Mental Health, other HHS departments such as the Centers for Medicare and Medicaid Services (CMS), and the Social Security Administration are key actors in the aging network on the federal level. The aging network also includes a wide array of for-profit and nonprofit organizations that advocate for the well-being older adults, provide direct services, and participate in coordination and planning.

THE CHALLENGES OF THE AGING NETWORK The “aging network” is a large and diverse set of organizations and programs that encompass a variety of settings, professionals, and practice missions on behalf of older Americans. Originally a network supported primarily by the OAA, today’s aging network includes the 655 AAAs operating on a local level, the state units on aging, and more than 200 tribal and Native Hawaiian organizations, as well as thousands of nonprofit and forprofit organizations serving older Americans. Each community has a patchwork quilt of services that work solely, or in part, with older adults. While the AAAs were developed and supported by OAA funding in the past, today the vast majority (99%) also receive other funds through their states, localities, Medicaid waiver programs, grants, private pay consumers, and charitable donations and fundraising (National Association of Area Agencies on Aging, 2009). The survey of AAAs conducted in 2009 revealed that AAAs have an average of 10 informal partnerships and five formal partnerships with other organizations and report that these partnerships have helped them in their reach and scope of services. However, many report that they continue to struggle with competitive forces on the local level and need technical assistance and training to move ahead in the future. Nearly 20% (17.7%) reported that they now have funding as a result of services provided to private pay consumers—a dramatic shift from the solely public sector activities and origin of this network. Not only has the business environment changed for the OAA network of services, so has the demands placed on this network. In 2000, for example, the passage of the NFCSP added a large and growing client base to the legislative mandate set forth by Congress for the aging network. States receive allocations to provide services to the family and informal caregivers such as information about available services, help in gaining access to the services, counseling and training, respite care, and

20 Section I. Older Americans, Older Americans Act, and the Aging Network

other services. The allocations are based on the number of residents over the age of 70 years in each state or territory. In 2009, the funding for these services was $154 million. In 2008, data show that an estimated 635,000 caregivers were served by these programs (AoA FY2008 US Profile of OAA Programs). In addition, as outlined in Chapter 1, the older population is increasing and will continue to increase for at least the next two decades. Keeping up with the demand for community-based services by an aging and older age group with increasing service needs will be a challenge for the aging network. An expanded legislative mandate, increasing competition and demand, and a funding stream that has not kept pace with these changes are all serious challenges to be faced by the aging network of the future. Carol O’Shaughnessy, who is a leading expert in the aging network and the legislation that supports this network, and Robert Dwyer, Executive Director of an AAA in the state of Massachusetts who has spent decades working on issues in aging and the aging network, are our expert commentators for this section. They discuss their view of the future challenges from their individual perspectives of the aging network below.

EXPERT’S CORNER Carol V. O’Shaughnessy Principal Policy Analyst National Health Policy Forum The George Washington University Washington, DC The Aging Network: Challenges for the Future The mission of the aging services network set out by law is expansive and aimed at addressing many competing needs of older people across a wide spectrum of services. Aging service network agencies have evolved from planning and coordination entities to managers of multiple sources of funds and responsibility for programs beyond the OAA. Because of the mandates that the network must coordinate services and act as advocates, it has the potential to improve access to

Chapter 2. Older Americans Act Legislation and the Evolution of a Network

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services for older people by integrating complex programs funded by multiple financing sources. Despite its broad mandate and sweep of services, OAA resources are relatively constrained. Though the Act’s resources reach limited numbers of older people, those served are highly vulnerable. Many advocates have pointed out that funding has not kept pace with increasing demands from a growing elderly population. Some programs have grown very slowly over time, or funding has not been brought to scale. Some programs’ capacity depends heavily on volunteers, thereby masking any need for additional staff to carry out program functions. Moreover, the aging services network’s decentralized planning and service model has led to wide variability in program implementation across states and communities and uneven quality in service delivery. At the same time, decentralization in decision making has prompted many aging service providers to initiate creative programs even with limited funds. OAA funds serve many vulnerable older people. But future growth in the older population will challenge the fabric of social and health-support services in communities across the nation and affect families who care for their older family members. Aging service providers will face increasing challenges in financing and delivering a wide range of community services for vulnerable elderly. Questions to be considered in the future include: B

B B B

B B

What actions can policymakers, at the federal, state, and local levels, take to strengthen the aging network infrastructure and to improve the quality of services? What actions will be necessary to sustain community services in the face of growing demand? How can the aging network balance universal participation with its mandate to target multiple groups of vulnerable populations? How can aging network agencies address the tension between providing federally designated priority services with mandates to meet locally identified needs? What is needed most—new programs? Increased funding for existing programs? Improved quality of service delivery? How can the aging infrastructure be better positioned to address the needs of the growing-old population?

22 Section I. Older Americans, Older Americans Act, and the Aging Network

These issues may become quite salient when the OAA is reviewed for reauthorization in 2011—the first year the baby boom population begins to turn 65. For more information see: The Aging Services Network: Accomplishments and Challenges in Serving a Growing Elderly Population. http://www.nhpf.org/ library/background-papers/BP_AgingServiceNetwork_04-11-08.pdf.

EXPERT’S CORNER Robert Dwyer, PhD Executive Director, Central Massachusetts Agency on Aging Boylston, MA Area Agencies on Aging: Challenges for the Future The AAAs, seen from the perspective of the OAA of 1965, must look at and plan for the needs of those aged 60 years and above and their caregivers, allocate funds under the OAA, and assure that particular populations (e.g., those underserved for reasons of rurality, poverty, language, or another isolating condition). As the Executive Director of the AAA, I know that this is already a tall order, and in the current environment, it often seems to me as insurmountable. In the years since 1965, amendments to the OAA have worked to keep the law open and flexible, however. And, with the additions of the National Family Caregiver Program in 2000 and the Choices for Independence amendment in 2006, the Act has even seen elements of innovation. Few would argue that the current climate of shrinking financial resources remains a key obstacle. Combined with an increased cost of living, I see that budgets for the purchase of services face the same exigencies as our household budgets. In essence, the same dollars simply buy fewer products. Yet, our issues of available resources, fueled by limited funds, need to be seen from other perspectives. My agency’s attempts to bring services to seniors and caregivers are often challenged by a lack of transportation options, difficulties due to geography and rural distance, and in some cases a lack of availability, which prohibits any delivery of service at all. Urban areas also

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bring issues of service delivery, due in part to declining neighborhoods, increasing poverty, and increases in populations of older and disabled adults that are attracted to cities under the assumption that services, such as transportation, are more available in those settings. Aging and Disability Resource Centers (or Consortia), a result of the 2006 amendment called Choices for Independence, are already growing around the nation. Tied to AAAs, ADRCs look to better coordinate services, and, I hope, assist consumers across the age spectrum, in accessing them. Changing demographics will increase these challenges for our AAAs. As my generation of “Boomers” continue our march to the “golden years,” numbers alone will overwhelm our home- and community-based service system. There will not only be an increased number of older people, but also the increased population of elders will mean more frailty, either due to old age or due to work-related injury or illness. As well, there will be far more diversity in the coming elders, certainly by ethnicity, and also by sexual orientation and living arrangement. Boomers will also be better educated and will look differently at when and how services are delivered. Technology will play a greater role, commanding a place of primacy in service delivery. Cities will look to become “livable communities,” able to offer necessities AND luxuries within their own borders. And, we cannot forget the expanded wealth of knowledge and experience that aging Boomers will bring to our communities. Their addition to the ranks of “older Americans” will bring myriad benefits to our changing world. For our AAAs, innovation and flexibility must be at the forefront. The crystal ball tells us much, but only our minds and hearts will face what lies ahead.

DISCUSSION QUESTIONS 1. Discuss the questions that our experts have posed to the reader and identify which of these questions are most important to address in the next 5 years. 2. Identify other issues that may affect the aging network in the future. Prepare a testimony for presentation at a public hearing on the reauthorization of the OAA and present it to the class.

24 Section I. Older Americans, Older Americans Act, and the Aging Network

3. Imagine yourself the Executive Director of a local AAA. A recent survey conducted by your staff shows a growing number of seniors concerned about the physical condition of their homes. What kind of programs might be offered to them? If these programs are offered, of what benefit would they be to the individual, the neighborhood, or the community in general?

REFERENCES Administration on Aging (AoA). (2007). Choices for independence: The Older Americans Act amendments of 2006. Administration on Aging Fact Sheet. Retrieved May 10, 2010, from www.aoa.gov National Association of Area Agencies on Aging. (2009). Area agencies on aging: Advancing access for home and community-based services: 2008 area agencies on aging survey. Older Americans Act of 1965 and the native American Programs Act of 1974, as amended through December 31, 1992. Washington, DC: U.S. Government Printing Office. O’Shaughnessy, C. V. (2008a). The aging services network: Accomplishments and challenges in serving a growing elderly population. National Health Policy Forum Background Paper. Washington, DC: The George Washington University. Retrieved May 1, 2010, from www.aoa.gov/AoAroot/About/Budget/ 2009Appropriate.aspax O’Shaughnessy, C. V. (2008b). The aging services network: Broad mandate and increasing responsibilities. Public Policy and Aging Report, 18(3), 1– 18. National Council on Aging. (2010). NCOA issue brief: Older Americans Act Appropriations. Washington, DC: Author.

II

Programs and Services for Older Americans

M

any of the programs and services included in this section have common elements. Adult day care centers and multipurpose senior centers utilize transportation and have major social components. Although we often discuss providing “services” or “serving” older adults, the attempt is to differentiate between programs and services, terms often used synonymously. As defined, “programs” contain individual elements; “services” include many of these same elements combined under a larger umbrella. These programs and services are discussed as they are most commonly organized, but the existence of state-by-state variations means that descriptions of a program or service may be more applicable to one area than another. The focus is on individual programs vital to the well-being of older adults: information and referral and outreach, physical health and mental health programs, transportation, elder justice, employment, volunteer programs, educational programs, and nutrition programs.

PROGRAMS Existing programs and services provided through the aging network have been categorized as follows: B B B B

Home-based and Community-based Long-term Care Elder Rights Protection Health, Prevention, and Wellness Special Projects 25

26 Section II. Programs and Services for Older Americans

Home-based and Community-based Long-term Care Programs B B B B B B B B B B B B B

Supportive Services and Senior Centers Health, Prevention, and Wellness Program Nutrition Services National Family Caregiver Support Program (NFCSP) Grants for Native Americans Community Living Program Grants Aging & Disability Resource Centers Long-Term Care Planning National Center for Benefits Outreach and Enrollment Alzheimer’s Disease Grants Naturally Occurring Retirement Communities Community Innovations for Aging in Place (CIAIP) Projects Lifespan Respite Care Program

Elder Rights Protection Programs B B B B B B B B B

Prevention of Elder Abuse, Neglect, and Exploitation National Center on Elder Abuse Long-Term Care Ombudsman Program Legal Assistance Pension Counseling and Information Program SMP Program National Center for Benefits Outreach and Enrollment National Minority Aging Organizations Technical Assistance Program Women and Retirement Planning Program

Health, Prevention, and Wellness Programs B B B B

Evidence-based Disease and Disability Prevention Program Diabetes Self Management Training Initiative Hispanic Elders Project Healthy People 2020

SERVICES In contrast to programs, existing services in aging offer a large number of components and are increasingly under pressure to expand. Because these services are community-based, the demand for the expansion of

Section II. Programs and Services for Older Americans

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existing programs as well as the development of new and innovative programs, often come from the seniors in the community and their families. The mission of the Administration on Aging (AoA) is to develop a comprehensive, coordinated, and cost-effective system of home and community-based services that helps elderly individuals maintain their health and independence in their homes and communities. The AoA provides funds for six core services: B B B B B B

Supportive Services Nutrition Services Preventive Health Services The National Family Caregiver Support Program Services that Protect the Rights of Vulnerable Older Persons Services to Native Americans (aoa.gov)

We will examine some complicated and vital service delivery systems, including multipurpose senior centers, housing services, in-home services, adult day centers, and services provided to those in residential care environments. It should be noted that while these chapters are presented individually, they are not mutually exclusive. Older Americans may be using more than one service at any given time. For example, an older adult may attend the local senior center and live in senior housing where he/she may also receive home-health services. Of course this assumes that the individual has been able to not only locate but also access services and programs in the community. Navigating the aging network can be a daunting task and one that, more often than not, results in frustration for the senior and/or the family. There are a variety of reasons for the fragmented nature of the aging network, one of which, as one would suspect, involves funding and the way in which programs and services are funded. More often than not, aging network professionals find themselves patching together multiple funding sources, which also may require a variety of eligibility standards, further complicating one’s journey through the network itself. In some communities, there may be services and programs that are not available locally. This creates problems for individuals, their family members, and the community in general. A Professional Geriatric Care Manager (PGCM) can be a good resource for older consumers and their families as they navigate the aging network. A PGCM is an individual who has met the education and experience requirements, has the core gerontological competencies, and

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is a member of the National Association of Professional Geriatric Care Managers (GCM). According to Grabinski, “Geriatric Care Managers are health and human services professionals with backgrounds in gerontology, nursing, social work, or psychology whose private professional practice is based on issues of aging and elder care” (2007, p. 94). As we begin to explore the myriad of programs and services, it is important to keep in mind the fact that whether we are addressing transportation, mental health, or housing, all of the programs and services within the aging network are intricately linked and have been and will continue to be a vital component of every community. The mission and vision of the AoA (2010a; 2010b) outlines very clearly the goal of the aging network, which is, in a word, independence. REFERENCES Administration on Aging (AoA). (2010a). Retrieved from http://www.aoa.gov/ AoARoot/About/index.aspx Administration on Aging (AoA). (2010b). Retrieved from http://www.aoa.gov/ AoARoot/AoA_Programs/index.aspx Grabinski, C. J. (2007). 101 Careers in gerontology. New York: Springer Publishing Company.

3

Information and Referral

BACKGROUND A few months ago we were giving an informal presentation about aging and older adults to a study group of financial planners. All of them had older clients and met together on a regular basis to study the changing nature of the older population and their lifestyle so that they could better serve this growing sector of their business. After going through the basics of demography and family, we gave them a brief overview of the aging network. One of the women in the group spoke right up after the briefing on the aging network and said: “What are you talking about this ‘aging network’? Is this something that every country has? Why do we have services for older people? Why are they different than other people?” Those questions stopped us in our tracks. Questioning the existence of the aging network had never entered our thoughts. But they are good questions and questions that address the central purpose of an effective information and referral system. Advanced age is not always an indicator of need and many, if not most, older Americans are independent and do not need services or special treatment. If they do need something, they are most likely to turn to family and friends for help. An information and referral service is an essential link between this network and the older person or the family members when there are service needs that cannot be met by a son, daughter, neighbor, or spouse. An effective information and referral (I & R) system provides access to needed services. Ideally, this system addresses each of the following factors: 29

30 Section II. Programs and Services for Older Americans

B

B

B B B

Information on one or more community-based services that might be helpful to the consumer based on the information they provide to the information and referral professional. Information about each of the services, including who they serve, how the services are provided, eligibility to receive the services, and the costs of the services. Whether or not there is a waiting list for the services. What the consumer needs to have on hand when they first call or visit the program. Information about what languages are spoken by the service professionals.

The aging network supported by the Older Americans Act (OAA) is required to devote resources to I & R that targets older adults and their family caregivers. And the other components of the aging network know it is good business to let people know about them and the resources they afford. Over the 35-year history of the aging network, there have been several different approaches to providing information about services and resources available. The one consistent factor in the provision of I & R is that, under the OAA, each geographic area was expected to provide adequate information to older adults and, later, to those who provide informal care to older adults.

THE HISTORY OF I & R FOR AGING SERVICES Since the passage of the OAA and the establishment of the Administration on Aging (AoA), the provision of information about and access to available services have been a critical component of aging services. Before computers became available, I & R was a difficult and time-consuming task. Information about agencies, the services they provided, and the eligibility for services was commonly maintained on cards or printed lists. It was almost impossible to maintain a comprehensive list of services and up-todate information on a national basis. And, even with the new technology that we have today, maintaining up-to-date lists of information important to a consumer is a time-consuming task. In 1975, an “Interdepartmental Task Force on Information and Referral” was set up to review federal I & R resources and to develop plans to coordinate these resources (Wilson, 1984). This task force defined I & R simply as a way to link those in need with

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appropriate resources. In the 1970s through the 1990s there were I & R providers operating under the assumption that people with needs would contact them and explore options for meeting these needs. There were also outreach programs that operated on the assumption that not everyone was able to identify their own needs and/or seek help for them. Outreach programs continue to be used in special public health campaigns such as education about HIV-AIDS and with special needs populations, but a lack of resources to fund outreach efforts have limited their scope and availability today. Since their inception in 1973, the Area Agency on Aging (AAA) network has been expected to provide information about available services and programs in their service areas. In 1974, the Administration on Aging set up a set of service components that would lead to a comprehensive I & R service. These included: 1. 2. 3. 4. 5. 6.

A facility to serve the informational needs of consumers. Ensuring that information was updated on an ongoing basis. Ensuring access to information by older consumers. Providing outreach. Following up on referrals. Providing transportation to a needed service when necessary.

These elements, and others that have been identified since, are all important access services to ensure that older adults and their families can identify what they need, locate the organizations and professionals who provide it, and have the ability to use a needed service. In the 1970s and 1980s, the I & R network about resources for older adults was expanding well beyond that of those offered by the aging network. Many states had a centralized access point for all social, health, and mental health services. This central I & R service was available free of charge to anyone who called with a question. The professional I & R provider who answered the phone had the charge of helping the caller identify the type of service he or she needed and the options available, if any, to get help with their problem. Local United Way organizations were involved in supporting and advising communities and states about the provision of information and referral services. In 2000 the United Way and the Alliance of Information and Referral Systems were successful in securing the “211” number nationally as an easy-to-remember national access point for information and referral to health and human services. The United Way of Atlanta first pioneered the “211” approach to I & R.

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Recognizing the importance of toll-free phone lines in the provision of I & R services, the aging network was busy making innovations in its own approach. In 1990, the AoA provided funding to begin the Eldercare Locator, a nationwide I & R service devoted to aging network resources. The 1-800-677-1116 number has been in service since 1991 and now has an on-line component. The Eldercare Locator was developed by and continues to be managed by the National Association of Area Agencies on Aging (N4A) in conjunction with the National Association of State Units on Aging (NSUA).

AGE-INTEGRATED I & R VERSUS AGING NETWORK I & R A central question regarding the statewide I & R services, and now the “211” service for aging professionals, centers around the extent to which the information professional on the phone has adequate training in issues of aging to make appropriate referrals and suggestions to the caller. A caller may seek information about a specific service he or she thinks an older parent or grandparent needs and, as a result, receive only information about that service. For example, concerned family members who know little about the aging network and resources available to older adults might call asking specifically for the names and numbers of nursing homes. Would a professional who is answering questions about the full range of health and human services have adequate insight into that question to probe further and inquire about the specific concerns of the caller? The specialized services and mission of the aging network have supported a separate I & R service—one that connected the caller to a professional who knew about the aging process, the importance of maintaining independence, and the range of services designed to support that goal. Little data exist that would answer the question about the relative importance to a good outcome of having the first contact with someone who is educated and trained in gerontology versus an information specialist who is trained in a lifespan approach to health and human services. Similarly, does gaining access to the aging network directly result in easier access to needed services? The Eldercare Locator and many other websites that are designed to drive consumers to specific services and information use a multifaceted approach in educating consumers.

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THE ELDERCARE LOCATOR The Eldercare Locator is a phone number (1-800-677-1116) that links the caller to people who can answer questions and refer the caller to local area agencies on aging for help. The AAA system is the backbone of this information and referral source and, as such, the responses are dependent on the extent to which each AAA has the ability to respond efficiently and effectively to the calls coming in. The website for the Eldercare Locator provides a range of general information to the user, but not live web-based access to services. If you visit the Eldercare Locator site, you will discover that the services you learn about if you use the phone access are services that are part of the local AAA partnerships, and this database does “NOT accept unsolicited requests from organizations” to be part of the database. The website also contains fact sheets about services, websites for federal agencies, national resources, and caregiver resources. The information contained on the website includes a description of services that might be available, including adult day services, a caregiver program, home health, home repair, elder abuse prevention, and the like. Each service type is briefly described. Visitors to the website need to call their local area agency on aging to get information about the specific service.

THE WEB AS A SOURCE OF INFORMATION The web is an easy and relatively inexpensive tool for providing information about services and information important to people seeking help. All of the federal agencies have websites that allow the consumer to get information about their programs and other information related to their funding, utilization, and initiatives. The Social Security Administration’s website has interactive features that allow beneficiaries to estimate retirement income and apply for benefits. The Center for Medicare and Medicaid Services (CMS) has detailed information about benefits, quality rankings of health-care facilities, and other information useful for consumers and family caregivers of older adults. The Administration on Aging’s website contains not only a rich set of data about older Americans, but also information about community services, aging, health, and all of the programs they support. The web has become a central starting point for information

34 Section II. Programs and Services for Older Americans

about services, health, and medical conditions and is, for many Americans, the starting point in a search for ways to solve a problem or meet a need. For older adults, the Internet has become a popular source of information. In a 2009 poll conducted by AARP (formerly, the American Association of Retired Persons), 78% of those between the ages of 50 and 64 reported that they have access to a computer. A little less than half of those 65 years of age and over reported using a computer. When asked if they used the computer to look for information about a topic or issue of interest, 68% of those between the age of 50 and 64 and 38% of those over the age of 65 reported they did. It is likely that an increasing number of older Americans will rely on the Internet as a source of information in the future.

CRITICAL THINKING QUESTIONS 1. Compare the experience of searching for information on the Internet and speaking with a knowledgeable professional. What are the benefits of each? Are there any risks associated with seeking information on the Internet or calling an I & R service? 2. Seeking information is a good way to begin getting help for yourself or someone else. What other factors are important in actually selecting and using a service? REFERENCES AARP Bulletin Today. (2009, December 1). Retrieved May 25, 2010. Eldercare Locator. (2010). Retrieved May 1, 2010, from http://www.eldercare.gov/ Eldercare.NET/Public/Network/ Live United, United Way. (2010). Retrieved May 1, 2010, from http://www. liveunited.org/about/history.cfm Wilson, A. (1984). Social services for older persons. Prospect Heights, IL: Wavelandz Press.

4

Senior Centers and Adult Day Services INTRODUCTION Senior centers and adult day services provide services tailored for older adults who live in the community. Senior centers are focused primarily on well elders while adult day services provide a supportive environment for elders who need some assistance and supervision during the day. Providing social opportunities and engagement with peers are at the center of both. Senior centers and adult day services are important to the elders who use them and often intertwined. Take the case of an older woman who is caring for her husband with Alzheimer’s disease (AD). By enrolling her husband in an adult day program a few days a week, she can spend time with her friends taking classes and playing cards at the senior center. Both adult day programs and senior centers provide information about services in the community, health education, and connect the participants and their families with the larger community’s calendar of cultural and civic events. And, both types of programs provide consumer information about health and supportive services that benefit the participants and their families. This chapter will review the history of both types of programs, the characteristics of their participants, operational issues, and future challenges.

SENIOR CENTERS The first senior center in the United States was started in the 1940s in New York City. The center was started by a group of New York City Welfare Department workers who believed that the older people with 35

36 Section II. Programs and Services for Older Americans

whom they were working would benefit from a place to meet, socialize, and organize activities. Senior centers were initially developed as indigenous, locally supported programs set up by nonprofit organizations or local government departments of social service or recreation. The Older Americans Act (OAA) 1973 amendments included a new “Multipurpose Senior Centers” section that recognized the importance of this program model and facilitated public investment in senior centers. The amendments to OAA in 1978 provided the legislative authority for the development of senior center buildings and the operation of senior centers. Senior centers were constructed as free-standing facilities and, with funding from the Department of Housing and Urban Development (HUD), were also developed within some housing projects for seniors. In many communities, the senior center was built as a new, modern building with amenities that allowed a range of activities. In other communities, funds were used to retrofit historic buildings that previously had served as schools or hospitals for their new use as senior centers. There continues to be an active small group of architects and designers who work on the design and retrofitting of senior centers and related use buildings. Senior centers became more popular and grew from 1,200 centers in 1970 to nearly 15,000 in 1995 (National Council on Aging [NCOA], 1995). In 1985, Louis Lowy described the essence of senior centers: The uniqueness of the senior center stems from its total concern for older people and its concern for the total older person. It works with older persons not for them, enabling and facilitating their decisions and their actions, and in so doing it creates and supports a sense of community that father enables older persons to continue their involvement with and contribution to the larger community. (Wagner, 1995, p. 4)

The National Institute of Senior Centers (NISC, 2010), a membership unit of the NCOA, defines senior centers as follows: A senior center is a community focal point on aging where older adults come together for services and activities that reflect their experience and skills, respond to their diverse needs and interests, enhance their dignity, support their independence, and encourage their involvement in and with the center and the community. (Wagner, 1995)

Senior centers are not only the most widely recognized program for elders but also the service most used by older people. In the 1978 OAA

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amendments, senior centers were identified as “focal points” with the following characteristics: service delivery focal points are organizations that have high visibility and information and services for everyone, provide an array of services and opportunities for elders, take responsibility for identifying new resources and creating linkages with other organizations, and ensure that all information disseminated is accurate and timely. The 2008 AoA data indicate that there are 6,951 senior centers serving as focal points in the United States. Some senior centers received OAA funding through Title III; in 2008, there were 6,022 centers that received OAA funding. Because senior centers continue to be rooted in the local community, their activities and services vary by community based upon available resources and community characteristics. Taietz (1976) identified two models of senior centers—the voluntary model and the social service agency model. The voluntary model is a center that focuses primarily on social and recreational activities. The social service agency model is a more professionally managed center that provides social services to center participants. Today’s senior centers have evolved beyond these two models and reflect the diversity of the communities they serve as well as the standards established by NISC in their accreditation system. Senior centers can serve as intergenerational programming centers, recreation centers for after-school programs, and a place for the community to meet in the evening to discuss community-specific issues and planning. Senior centers are now also a community resource for residents of all ages to learn how to use a computer. Multipurpose senior centers are not only focal points within communities but also offer a wide array of programs and services. In 2001, it was estimated that 75% of the existing senior centers in the United States were “multipurpose” senior centers. These centers provide volunteer opportunities, classes and educational programming, health services and health education programming, recreational activities, meal programs (see nutrition below for more information), and access to transportation and community services, as well as access to national and state benefits and services. Senior centers also provide opportunities for candidates running for public office to reach out to the senior community, students to learn about older persons through internships and volunteer service, and researchers. Turner (2004) described the wide array of models as including those that are “single purpose,” providing a meal, public and privately managed centers, centers that are free to consumers and others that charge for services, and some centers that serve ethnic groups and others

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that provide programming and support for frail and special needs elders. Turner’s study of more than 800 participants of 27 senior centers found that 80% of the participants were over the age of 70 and more than half reported that lunch at the senior center was their most important source of nutrition. More than half had been attending the center for more than 5 years. Pardasani (2004) explored the underutilization by minority group elders through a survey of 220 senior center directors in New York State. Since the aging population is increasing in ethnic and racial diversity and is projected to do so into the future, Pardasani was interested in looking at how centers could better recruit and serve this diverse group. Previous research conducted by Krout and others suggest that the “modal” senior center attendee was a White woman. In a study conducted by Krout and reported in 1988, he found that nearly 80% of the senior center participants in New York State were Caucasian. Pardasani’s findings suggest that multipurpose senior centers and those located in urban areas were most likely to serve the highest percentage of minority elders. Other factors that were related to higher minority participation included targeting ethnic, religious, or racial groups of elders, offering services in more than one language, and having a racially and ethnically diverse professional staff. In other words, programming and diverse staff makes a difference. The successful senior center has an adaptable, flexible program with a menu of activities and programs that appeal to the center user and the community in which the center is located. A center provides access to transportation and cultural events, lunch along with snacks, a few card tables, and a pool table. The card tables and the pool tables are a particular draw for the older men who participate in center activities. Using a computer, learning a foreign language or sign language, and taking field trips are all typical senior center activities. Increasingly, senior centers have also become a “health club” for community elders. In Baltimore, Maryland, for example, there are fitness centers in the centers that are staffed with kinesiologists who help the participants achieve their fitness goals. Some senior centers even have their own swimming pools, banks, and craft shops. The “good old days” of ceramics and bingo have been eclipsed by a diverse set of activities and a diverse set of participants. In many of the urban areas, senior centers are specialized for Asian elders, Hispanic elders, or Russian immigrants, serving ethnic meals and employing bilingual staff.

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Accreditation of Senior Centers In 1999, NISC began a national accreditation program for senior centers. The accreditation process includes a self-study that is done by the senior center. This self-study is guided by standards set by NISC. Baltimore County Department of Aging was the first area agency on aging to have all of their centers accredited. There are currently more than 160 senior centers that hold accreditation in the United States. The accreditation must be renewed periodically and centers are expected to maintain a level of quality in their programming that reflects the changing nature of both the older population and the local community. In 1995, a conference was convened by NISC and their parent organization, NCOA, to examine the future challenges of senior centers. There was a consensus among participants that change was necessary if senior centers were going to survive into the future and effectively manage the dramatic changes in the older population, including higher education levels and more diversity and the changing nature of financial support for senior centers. A series of recommendations were developed about ways to maintain senior centers as vibrant community organizations that serve not only the older residents but also the larger community as well. Dr. John Krout, an early researcher and expert on senior centers, shares his views about the challenges that senior centers are facing.

EXPERT’S CORNER John A. Krout, PhD Director and Professor Ithaca College Gerontology Institute Ithaca College Ithaca, NY Senior Center Challenges “This is not your mother’s senior center” is a quote that likely describes to a 55- or 60-year-old what the senior center of the 21st century is striving to become. Over the past 30 years or so, senior centers have experienced their own life cycle change as participants (who often also served as volunteers) have “aged in place.” Although tremendously varied in

40 Section II. Programs and Services for Older Americans

terms of programs and user characteristics, centers have historically operated from a “nutrition, recreation, and socialization” model. In many communities, especially in rural and central city areas where seniors have fewer resources, this model still has relevance. However, even 30 years ago, some senior centers offered wellness and educational programs to attract the growing number of more active elders. Today, the large majority of senior centers recognize that the new wave of 60 plus baby boomers are demanding new program options and that centers need to shape a new image to compete with the increasing number of activity options available to the 60 plus from the private sector. As they shape this new image, I would suggest that centers neither repudiate nor forget their history, but rather build on the strengths they now have. Above all, have an answer to the question “How will we know when we are successful (by what criteria will this be measured)?” What major challenges/opportunities will senior centers face as they transition to the future? They are the same ones that centers have faced since Little House opened its doors 50 years ago: B B B B B B

Attracting participants; Garnering funding; Having attractive space and programs; Recruiting and retaining effective staff and volunteers; Establishing a community identity and positive image; and Finding ways to serve elders of varying interests and abilities.

What fundamental actions do I think that senior centers need to take in the 21st century? Below are some suggestions: B B B B B

Identify goals and develop strategic plans to address the interests of baby boomers and current center participants; Identify the “image” the center wants to project and market it accordingly; Have space that expresses that image and programming; Define and stake out their “place” in their community’s “activity menu”; Define the organizational and personal linkages needed to be successful;

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B B B

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Know the demographics of their potential users and service area— for the next 25 years; Be entrepreneurial in funding and identify private sector tie-ins— assume the “old” sources will dry up; and Do not be afraid to dream!!

ADULT DAY SERVICES Adult day services are professional programs to meet the needs of adults in a community-based setting. As part of the home- and community-based long-term care array of services, adult day services provide a supervised support environment for elders and other adults with cognitive, developmental, and physical health problems. Adult day services models emerged in 1947 with the development of a geriatric day hospital opened by the Menninger Clinic. In the early days of adult day service programs, this service was referred to as “adult day care.” This term was controversial among advocates for older adults because of its association with child care. Although some older programs may continue to use the term “adult day care” in their title and marketing material, professionals prefer the term adult day services. The National Adult Day Services Association (NADSA) represents the adult day service organizations and has a long history to working to improve the quality of adult day services, as well as expanding the research on adult day services and the awareness of the importance of this type of service for both older adults and their family caregivers. NADSA was started in 1979 and was originally a membership unit of the NCOA. Dabelko, Koenig, and Danso (2008) point out that the development and the growth of adult day services has largely been a function of adapting to the external environment—in this case, the increasing number of older adults with dementia, physical frailty, and other functional limitations along with a policy focus on “aging in place” and reducing the excessive costs of institutionalization. A 2008 study conducted by MetLife Mature Market Institute of adult day services and home care costs articulates the efficiency of adult day services in the continuum of home- and communitybased services. The average daily rate for adult day services was $64.00 a day in 2008. This compares with an average hourly rate of a home health aide of $20.00 and of homemakers/companions of $18.00. Adult day services are available under a range of auspices from nonprofit organizations to profit-making organizations. NADSA reports that

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approximately 78% of the adult day centers are operated on a nonprofit or public basis; 22% are for-profit organizations. Based on the national census conducted by Partners in Caregiving in 2004, NADSA reports that the majority of the centers (70%) are affiliated with other organizations such as skilled nursing facilities, medical facilities, or multipurpose senior organizations. This census also revealed that adult day centers provide services for 150,000 participants every day. According to NADSA there are 4,601 day programs operating in the nation today—this is a 35% increase from the estimated 3,407 programs identified in the 2004 census. Medicaid waivers and Title III of the OAA funding for homeand community-based services that prevent premature institutionalization are important sources of revenue for adult day services. Income-eligible elders are able to attend adult day services under the waiver programs. Other adult day service participants pay for the service out-of-pocket. Additional funding for adult day services will also be forthcoming as a result of the National Lifespan Respite Program described in Chapter 9. Adult day service programs provide a range of services, including transportation between the program and the participant’s home, social activities, meals and snacks, personal care such as help with toileting and grooming, and therapeutic activities such as physical exercise and cognitive activities. In the 1970s there were two models of adult day services—the medical model and the social model. Today there are three models: a social model that also includes some health services; a medical model that provides therapeutic and health-related services with some social services; and a specialized service model that serves participants with specific conditions such as AD and related disorders or developmental disabilities. The federal government does not regulate adult day service programs, but most states have guidelines in place and/or an agency (health departments or department of aging) that monitor adult day services. In addition, there is a voluntary system of accreditation for adult day services that was developed by NADSA in 1998 and is managed by the Commission on the Accreditation of Rehabilitation Facilities (CARF). NADSA leadership specifically selected CARF to manage this accreditation because of its focus on rehabilitation, the centerpiece of the philosophy of adult day service development in the late 1990s. Accreditation has been slow to catch on within the industry, and the 2004 Census found that only 6% of the centers were accredited and that two-thirds of those surveyed reported that they had no plans to pursue accreditation. Future funding sources that are based upon performance and quality

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indicators rather than payment for services may make this accreditation more important to adult day services. Participants in adult day service programs have a range of health conditions. More than half (52%) of the participants have some cognitive deficit. The average age of a center participant is 72 years and two-thirds of the participants are women (NADSA, 2010). Therapeutic and rehabilitative services are important components of an adult day service program and will likely become more important in the future. In a study conducted in Massachusetts, Silverstein, Wong, and Brueck (2010) set out to explore the extent to which the adult day service programs were addressing the needs of persons with AD. They were particularly interested in how the centers served persons with early onset of the disease, a situation in which caregivers commonly report that there are few appropriate program options. Their survey found that, within the 70% of programs that had services specifically designed for persons with AD, 71% of them provided early-stage services, 63% provided late-stage services, and 43% provided end-stage services. There were nearly half (44%) of the sites that reported that they provided services for persons younger than 65 years of age. The researchers reported that most centers were engaged in stage-specific therapeutic services and, when necessary, individualized planning was undertaken to ensure that the program was meaningful and appropriate for the early-onset participant. This study highlights some of the compelling issues that the home- and community-based service network will be facing in the future as the demand for specialized programming increases with the aging of the baby boomers. Adult day services are also an important source of respite services for family caregivers (Arch National Respite Network and Resource Center, 2010). In addition to the professional therapeutic attention to the day service participant, staff also needs to view the family caregiver as a beneficiary of the services. Family caregivers need help in fostering the transition to adult day service programs. Bull and McShane (2008) analyzed the transition to and from the adult day program to better understand the role of the family caregiver in this transition. In their sample, half of the families received help from a care manager assigned to them by the Department on Aging who helped them identify programs. Geographic proximity was one criterion of importance to this care manager. Family caregivers were interested in safety, staffing ratio, types of activities offered, cleanliness, and a “good fit” between the interests of the elder. Family caregivers encouraged the older care recipient by giving them “pep talks” and helping them dress and get ready for the van to pick

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them up. Good relationships between the family caregiver and the staff helped in the adjustment of the caregiver as did positive reports provided by the care recipient. Their study found that adjustment to adult day services was facilitated by regular attendance of at least 3 days a week. Most adult day services operate only 5 days a week, providing services during the day. This schedule can help an employed caregiver that works “regular” hours during the week but not the off-schedule worker. Some centers are open on Saturdays, which can free a family caregiver to do errands that day. And a few programs offer evening hours. Both the service array and the schedule may differ if the dominant focus of the adult day service is respite care rather than therapeutic services for the participant. In the future we may see an expansion of the models of adult day service programs as some begin to focus on the needs of the family caregiver and offer more flexible scheduling and drop-in programming. Balancing the needs of the family with the needs of the participant will, however, continue to be a critical factor in a successful adult day service program. Historically, programs have provided assistance in identifying needed community services, education about caregiving, and information about diseases such as diabetes and AD to the families of program participants. We will likely see an expansion of these education and support services on the part of programs that are responding to the lifespan respite agenda. THE CONGREGATE MEAL PROGRAM Good nutrition is the foundation of good health. The OAA Nutrition Program has been providing nutritional meals to older Americans since 1973, when the amendments to the OAA authorized the Elderly Nutrition Program. Since that time, nutrition programs have been a cornerstone of community-based programs for older Americans. Meal programs have become the most popular and well-received programs of the OAA. This section will address information related to the congregate meal program; Chapter 9 will examine the home-delivered aspect of the OAA nutrition program. The purpose of the nutrition program is to reduce hunger and food insecurity, foster social participation, and encourage health promotion. The OAA authorizes the nutrition programs under three Title III programs, including B B B

Congregate Nutrition Services (Title III C1), Home-Delivered Nutrition Services (Title III C2), and Nutrition Services Incentive Program (NSIP).

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The congregate nutrition services are group meals provided in senior centers, senior housing complexes, and other settings to any person over the age of 60. Congregate meal programs provide participants with a nutritious meal as well as an opportunity to socialize with peers. The group meals also offer a venue for nutrition education, community activities, and educational programming. The home-delivered meals are provided to individuals who are homebound. The meals are delivered to the elder’s home and, in many cases, the meal is a gateway service to other needed home- and communitybased services. These meals are available to persons 60 and over who are homebound and the spouse of the meal recipient regardless of age (AoA, 1996). The Nutrition Services Incentive Program (NSIP) The NSIP is a program that provides additional resources in the form of cash or commodities or a combination of both to supplement the resources available for nutrition programs. In 2008, the congregate meal program served 1,656,330 people. The Title III funds spent on the congregate program was $265.5 million. The total cost of the congregate program was $636.2 million, with Title III providing 42% of the funds needed for the program. There were 909,787 people served by the home-delivered meals at a Title II cost of $228.1 million. The total cost of the program was $755.1 million; Title III covered 30% of this cost. In addition to the meals provided to older Americans, Title III also provides nutrition counseling and education. In 2008, $1.04 million of Title III funds was spent on nutrition counseling and $3.5 million on nutrition education. Title III funds supported 38% of the total costs of nutrition counseling and 57% of nutrition education costs. HISTORY OF THE CONGREGATE PROGRAM The malnourished elderly have been a part of our society for a long time, but formal, sustained programs to provide for those who do not have personal or financial resources are relatively new. The most significant research prior to the planning and development of a national nutritional program was the 1965 National Study on Food Consumption and Dietary Level sponsored by the Department of Agriculture. This study

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showed that 95 million Americans did not consume an adequate diet; 35 million of these had incomes at or below the poverty level. Subsequent analysis indicated that 6 – 8 million of those aged 60 and over had deficient diets. These data laid the foundation for a federal nutrition program for the aged (Cain, 1977). A task force set up to develop recommendations based on the results of the national study recommended demonstration projects for a 3-year period to determine the best mechanisms for delivering nutritional services. Demonstration projects were needed because of the lack of information on how such programs should be designed and, more important, the extent of their effectiveness (Bechill & Wolgamot, 1972). The purpose of the demonstration projects was to “design appropriate ways for the delivery of food services which enable older persons to enjoy adequate palatable meals that supply essential nutrients needed to maintain good health . . . in settings conducive to eating and social interaction with peers” (Cain, 1977, p. 142). Although this overall goal seems straightforward, the demonstrations were expected to examine multiple issues. In addition to improving the diet of older adults, the meals were to be served in social settings that would allow for the testing of the effects of different types of sites. These sites would be evaluated in terms of their ability to promote increased interaction among the older clients. The effects of a nutrition education program on the eating habits of the elderly would be evaluated, as well as the general ability of the congregate meals approach to reduce the isolation of older persons. Of course, the AoA was also concerned about the comparative costs of different methods of preparing and delivering meals and the problems that were entailed in any effort to increase the nutritional quality of the older person’s diet (Cain, 1977). AoA funded 32 demonstration and research projects under Title IV. An intensive evaluation of the demonstrations produced the support for the National Nutrition Program first authorized in the 1973 OAA Amendments. The 32 demonstration projects were designed to control for variations in income, living conditions, ethnic background, environmental setting, staffing, and record keeping. This intricate design allowed national guidelines to be developed that would incorporate the successful components of each project. More important, the Title IV projects indicated to the Administration on Aging and the U.S. Congress that the proper provision of congregate meals for groups of elderly people fostered social

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interaction, facilitated the delivery of supportive services, and met emotional needs while improving nutrition. All persons aged 60 and over and their spouses are eligible for services under the nutrition program. Special emphasis is placed on serving the low-income and disadvantaged elderly. The centers or sites for congregate meal programs are located in any space appropriate for the serving of congregate meals. The centers can serve as few as 5 or as many as 250 participants on a given day; however, the average center serves between 20 and 60 participants each day. Congregate Meal Sites Church basements, schools, high-rise apartments, senior centers, and multipurpose centers are the most common locations for nutrition sites. Because transportation is so important to the success of the program, centers are usually located in high-density areas where walking is possible, or on bus or subway lines. In suburban and rural areas, the centers are located in areas where some form of transportation to and from the center can be provided by the site. Unless the nutrition program is incorporated into senior centers that offer all-day programming, nutrition sites or centers are open up to 4 hours a day. The location of the center, available transportation, and additional resources affect the length of time of the daily operation of the program. Location also affects the type of programming developed by the site. Sites that are not used for other purposes allow greater freedom for alterations, decorating, and storage space than do locations that have other activities scheduled in the same space. Shared space has posed a hardship for many nutrition programs in meeting the national guidelines for program development. Because the purpose of the nutrition program is to provide both meals and socializing, programming is an important part of the services offered. When the nutrition site is incorporated into a high-rise for the elderly, a senior center, or a recreation center, programming is usually part of the additional available resources. When the nutrition site is its own center, programming responsibility rests with the nutrition site managers under the direction of the nutrition project director for the region. Programming is diverse and related to the interests and backgrounds of the participants. The programming available is similar to that found in senior centers, but with special emphasis on nutrition education, meal

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preparation, buying practices, health maintenance, and physical fitness. Not all participants become involved in the programming. Nutrition screening, assessment, education, and counseling are, however, basic components of the program. Encouraging Participation Participants are encouraged to contribute something for the meal. The guidelines provide that individuals, from their own consciences, should determine how much they should and can afford to pay. Nutrition centers furnish envelopes or have similar systems in which participants pay what they feel is appropriate. The 1984 OAA amendments forbid programs from charging for their meals. Voluntary contributions, however, account for about 20% of the costs of congregate and home-delivered meals. Some congregate nutrition programs have adopted the use of posters to encourage older people to contribute for their meals. Others, such as the Columbus County Office for the Aging in New York State, have a suggested contribution scale. State offices on aging also receive surplus commodities or cash to supplement the cost of the meals they provide. The funding provided by the Department of Agriculture is based on the number of meals served with Title III funds. With the limited funding in some local areas in relation to the participant demand, participants have decided among themselves to contribute higher amounts so that more people can be served. Local donations and volunteers also help to defray about 14% of the costs of this program (Lieberman, n.d). FUTURE ISSUES AND INNOVATION The meal programs serving older Americans are changing as the characteristics of the population changes. For example, there are diverse menus for an increasingly diverse older population. An increasing number of meal programs offer meals with a Latin or Asian flavor or kosher meals that compliment the programming at senior centers who are serving these elders. In the future, this diversity of meal offerings will likely increase and include vegetarian meals or other options that support the community being served. Another issue that will persist into the future and require attention from policy makers is the mix of home-delivered and congregate meal programs. With the 85+ population the fastest growing group of elders,

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it is likely that the demand for home-delivered meals will continue to outpace the funding and supply. Currently, the area agency on aging has an option to transfer some of the funding from congregate to homedelivered when planning for the needs of their community. As the aging population increases in size, more funding will be needed to maintain the nutrition programs with a proportionately higher increase in the funding allocated to home-delivered meals. DISCUSSION AND ACTIVITIES 1. Develop a list of criteria you think would be important for the family caregiver to consider in selecting an adult day service program. Visit a few program sites on the internet to investigate whether the information offered addresses your criteria. What recommendations would you make to the program director to improve the site? 2. Discuss the differences between a program that is set up as a respite program and a program that is focused on the therapeutic needs of the participant. How might these differences affect the program from the perspective of the participant and from the perspective of the family caregiver? REFERENCES Administration on Aging (AoA). (1996). Serving elderly at risk: The Older Americans Act nutrition programs: National evaluation of the Elderly Nutrition Program, 1993–95. Washington, DC: Author. ARCH National Respite Network and Resource Center. (2010). Adult Day Care: One form of respite for older adults. Fact Sheet Number 54. Retrieved June 16, 2010, from http://www.archrespite.org Bechill, W. B., & Wolgamot, I. (1972). Nutrition for the elderly: The program highlights of research and development nutrition projects funded under Title IV of the Older Americans Act of 1965, June 1968, and June 1971. Washington, DC: U.S. Government Printing Office. Bull, M., & McShane, R. (2008). Seeking what’s best during the transition to adult day health services. Qualitative Health Research, 18(5), 597–605. Cain, L. (1977). Evaluative research and nutrition programs for the elderly. In J. E. O’Brien (Ed.), Evaluative research on social programs for the elderly (pp. 32–48). Washington, DC: U.S. Government Printing Office. Dabelko, H., Koenig, T., & Danso, K. (2008). An examination of the adult services industry using the resource dependence model within a value context. Journal of Aging and Social Policy, 20(2), 201 –217.

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Krout, J. (1988). The frequency, duration, stability and discontinuation of senior center participation: Causes and consequences. Final Report to the AARP Andrus Foundation, Fredonia, NY. Lieberman, T. (n.d.). Hunger watch: America’s elders are waiting for food. Retrieved January 8, 2005, from http://www.asaging.org/at/at-201/hunger.html MetLife Mature Market Institute. (2008). The Metlife market survey of adult day services & home care costs. Westport, CT: Author. NADSA. (2010). http://www.nadsa.org National Council on Aging (NCOA). (n.d.). Older Americans Act Appropriations— Nutrition Services. Retrieved January 8, 2005, from http://www.ncoa.org/ content.cfm?sectionID=165&detail=71 National Institute of Senior Centers (NISC). (2010). Accredited/Re-Accredited Centers. The National Council on the Aging Document. Retrieved October 4, 2010, from http://www.ncoa.org/strengthening-community-organizations/ senior-centers/nisc/ Pardasani, M. (2004). Senior centers: Increasing minority participation through diversification. Journal of Gerontological Social Work, 43(2–3), 41– 56. Silverstein, N., Wong, C., & Brueck, K. (2010). Adult day health care for participants with Alzheimer’s disease. American Journal of Alzheimer’s Disease & Other Dementias, 25(3), 276– 283. Taietz, P. (1976). Two conceptual models of the senior center. Journal of Gerontology, 31, 219 –222. Turner, K. (2004). Senior Citizens Centers: What they offer, who participates and what they gain. Journal of Gerontological Social Work, 43(1), 37 –47. Wagner, D. (1995). Senior Center Research in America: An overview of what we know. In D. Shollenberger (Ed.), Senior Centers in America: A blueprint for the future. Washington, DC: The National Council on the Aging.

5

Income, Retirement, and Employment

INTRODUCTION The road to income security in old age has been a long one for older Americans. Prior to the passage of Social Security Act (SSA) in 1935, independence in old age was based on an individual’s ability to continue to work, the good will of their family members, charity, or municipal or county programs. Early in the 1900s, older Americans without family support were dependent upon local welfare programs that included “poor houses” or welfare payments provided in their own homes. In the 1880s, Otto von Bismarck of Germany became the “. . . father of social insurance” (Schulz & Binstock, 2006) by inventing a social program for retirement. It took another three decades before the United States was ready to enact national programs that protected citizens from some of the common risks faced by all—old age, illness, and accident. During the Depression, homeless and hungry older people were a common sight in many of the nation’s cities. One of the displaced workers, Dr. Francis Townsend, used his unemployment status to start a movement that spread across the county. The Townsend movement advocated that the government provide all Americans over the age of 60 a payment of $200 per month with the only requirement that they spend it within 30 days so that the money not only supported the older recipient, but the economy as well. President Roosevelt’s proposal was to start a program that was employment based and modeled after a private pension. As Schulz and Binstock (2006) point out, both Bismarck and Roosevelt were conservatives who understood that pensions and Social Security were programs that could support work and social cohesiveness in the face of social change. Since the passage of SSA in 1935 there have been many changes in both the program and the people’s situations who rely upon it for their 51

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income. Envisioned as the proverbial “three-legged stool,” Social Security was designed to provide a foundation of income support for working Americans when they retired with the support of their own personal savings and a pension from their employers. In this chapter we will discuss the Social Security program, review the importance of the program to Americans of all ages, and describe the changes that have occurred over time in the other two legs of that three-legged stool. This chapter will close with a review of employment of older Americans and the aging network programs that assist older workers.

SOCIAL SECURITY BENEFITS AND PROGRAMS The welfare programs that many older Americans relied upon were incorporated into the SSA of 1935 in the form of grants to the states for old-age assistance. The SSA also established the Old-Age Benefit Program. Because it was apparent that it would be several years before that program would actually provide benefits, the means-tested program was the major source of income for the elderly. Progressive liberalization in the retirement provisions of the SSA has resulted in that being a primary source of income for many older persons since 1951. The old-age assistance program gradually diminished in size, to the point that it provided assistance for only a small proportion of the aged. In 1974, the old-age assistance program was federalized and merged with similar programs for the blind and disabled as part of the Supplementary Security Income (SSI) program. The SSI program was designed to remove the stigma from reliance upon welfare programs that was a barrier to the use of this means-tested program by many older Americans. Since the model of Social Security was one of a pension and something that recipients were “entitled” to because they had paid into it, it was thought that older adults would prefer to apply for benefits through the Social Security offices than go to the local welfare department to seek help. In 2009, there were less than a million (891,000) Americans 65+ years of age who relied solely on SSI. A little more than a million receive benefits from both Social Security and SSI. The majority of SSI recipients are disabled Americans younger than 65 years of age. In 2009 there were 4.2 million SSI recipients under the age of 65 who relied solely on SSI and an additional 1.5 million who received both Social Security and SSI. The maximum payment in 2009 was $653 a month for individuals and $980 for couples. This payment is

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lower than the “official” poverty level. SSI recipients are also eligible for other programs, including Medicaid for health care needs, subsidized housing, and other means-tested programs such as food stamp benefits. Although the Social Security Administration manages the SSI program, funds to support SSI do not come out of the Social Security Trust Fund; the program is supported by U.S. Treasury funds. Social Security provides income to retired workers and older lowincome persons and also covers workers who become disabled and survivors after a beneficiary becomes disabled or dies. A spouse and children up to the age of 18 are eligible for income support. Nearly a third of the Social Security beneficiaries today are younger than 65 years of age. Social Security is disability protection for Americans of all ages, insurance for a family when a worker dies, and an important source of income for grandparents who are raising grandchildren. For workers, Social Security benefits are an important unwavering benefit. As private savings accounts invested in the stock market deplete in value and pensions are harder to come by, Social Security benefits have provided a reliable and stable source of income after retirement. Social Security is a progressive program that redistributes money from higher income workers to lower income workers and from men to women. Single women, however, do not benefit as much as married women (Steuerle, Carasso, & Cohen, 2004). Social Security benefits make up more than 80% of the income of poor elders (those in the lowest fifth quintile of income), 65% of the third quintile of income, and only 18% of the highest income elders (Federal Interagency Forum on Aging, 2008). Social Security benefits are based on a worker’s income averaged over 35 years of their work life. The age at which workers can receive full retirement benefits is increasing to 67 (for people born after 1960). Workers retiring earlier than their full retirement age receive a reduced benefit; 75% of what they would receive had they retired at their full retirement age. Social Security also provides an enhanced retirement payment to workers who remain in the workforce until age 70; 7% increase for each year worked after the full retirement age. Widows and wives/spousal benefits are calculated as a percentage of the earner’s benefit. Currently, Social Security benefits have cost-of-living increases built into the system that automatically adjust benefits on an annual basis. This is an important element of the program today. Many beneficiaries can expect to spend 20– 30 years on Social Security and this cost-of-living element ensures that their income stream will not lag too far behind cost of living increases over time.

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Social Security has played an important role in increasing the economic well-being of older Americans. In 1959, 35% of Americans over the age of 65 were living in poverty. Today only 9% of Americans 65 and over are living in poverty. However, a closer look reveals that there is a pattern of poverty in old age that is centered around gender and race. Older women are more likely to live in poverty than men, and older Blacks and Hispanics have high poverty rates of 23% and 19%, respectively compared with older Whites with a 7% poverty rate. Social Security: An Intergenerational Program Social Security is an intergenerational program that benefits retirees, persons with disability, widows and widowers, and children. In 2008 there were 50 million Americans receiving Social Security benefits. Out of that number, 38 million were retired or older survivors, and 22 million were younger than 65 years. One of the “hidden” benefits of Social Security is those that accrue to the family members of older Americans. Before Social Security was in place, the family was a central source of support for Americans who were no longer able to work. Although families continue to support their aged relatives in a variety of ways, today both the older person and the family members have options that were not available before Social Security. In 2000, McGarry and Schoeni conducted a study to examine the relationship between Social Security and older widows’ independence. Using Census data and income source data, the researchers found that income provided by Social Security was a key determinant of widows living alone instead of with adult children. In 1920, for example, 67% of widows 65 years and older lived with adult children and only 11% lived alone. By 1990, these proportions had shifted to 19.5% living with adult children and 62% living alone. Their analysis suggests that an important value of Social Security, in addition to the income it provides, was the independence it provided to older widows. This benefit also accrues to the adult children who now may be free to make the decision along with their mother about residential location rather than have little or no choice. PENSIONS: THE WEAKENING SECOND LEG OF THE STOOL Pensions, either offered to public employees or to private sector employees, are considered to be the second leg of the three-legged stool of retirement income. Pensions have been around since 1875. Over time, general

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economic conditions of the country and legislation have influenced the type of pension the American worker has available to them. The federal government’s role in pensions has been to regulate, to provide incentives to employers, to provide pensions, and to provide coverage to workers who have lost their pensions due to bankruptcy of the employer. The Pension Benefit Guaranty Corporation (PBGC) was created by the Employee Retirement Income Security Act (ERISA) of 1974 to protect workers who had defined benefit pension plans through their employer. Defined benefit pension plans are pensions that provide a specific benefit to workers at retirement. This can be a lump sum benefit or a benefit amount provided over time. Workers were eligible for the defined benefit pension after working a preset amount of time at the company or becoming “vested.” Benefits are based upon age, years of service, and salary. In the pre-ERISA years, it was a common practice to award pension benefits to workers who had remained with their employer until retirement age. ERISA legislation was created to protect workers from arbitrary termination prior to reaching the age of retirement through vesting standards that required some level of benefits based on eligibility for some proportion of the benefit after a specified number of years. In 1975, the most common pension offered was a defined benefit pension. In the defined contribution plan, the employer contributes a percentage based on the employee’s salary into a fund. There are several types of defined contribution plans but the 401(k) plan is perhaps the best known type. In this model, employers make contributions and employees are also able to make contributions to a fund that is managed by a professional financial investment firm. Some companies will make contributions only if the employee also participates; others will make a standard percentage of income contribution for all full-time employees. The value of the fund determines the amount of retirement funds available when the employee retires. Retirement coverage is influenced by the access to a plan and the extent to which employees participate in the plan. An analysis of participation in pension plans conducted in 2006 demonstrated the dramatic shift away from defined benefit plans to defined contribution plans (Costo, 2006). In 1992 – 93, 32% of the workers in private industry were participating in a defined benefit plan, and 35% were participating in a defined contribution plan. By 2005, only 21% were participating in defined benefit plans, and 42% were participating in defined contribution plans. Employers are less likely to offer defined benefits due to the costs of offering these plans, and employees are more likely to prefer the defined contribution plan because they can move their fund when they change jobs. However,

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nearly half of the workers who change jobs cash out their funds rather than reinvest them. Gender makes a big difference in accessibility and participation to private pensions. Less than half of the men (42%) over the age of 65 have income from pensions while less than a third of the women (29%) of the same age have pension incomes. Gender also plays an important role in lifetime earnings. Women continue to be paid less than men—77% of men’s wages. Older women are not only less likely to have a pension than men, but when they have a pension it is smaller (Harrington Meyer, 2009). A NOTE ON THE THIRD LEG OF THE STOOL Personal savings is considered the third leg of the stool. American’s savings rates have been low throughout this decade and today, with the increasing popularity of the defined contribution pension plans, many workers are saving only through these plans. The Individual Retirement Account (IRA) offers beneficial tax treatment for saving through an IRA (tax deduction) or a Roth IRA (nontaxable earnings). Both of these vehicles and other related vehicles were designed to increase savings. Nonetheless, savings in American households has been negative during the past decade. During the current recession an increase in savings was observed at the end of 2009. This savings rate, however, was only 2.9%. Prior to that, Americans were saving an average of 7% between the 1950s and the 1990s. A new third leg of the retirement stool is emerging now—work. WORKING THROUGH RETIREMENT In the 2001 recession in the United States, the labor force participation of older workers increased. This increase was notable not only because it occurred during an economic recession but also because it reversed a decade-long pattern of earlier retirement among American men. In 2000, the Senior Citizen to Work Act repealed the earnings test for Social Security beneficiaries. Prior to the repeal, “retirees” who worked were subject to a tax on their income that functioned as a disincentive to work. Women’s labor force participation has also increased significantly. Between 1977 and 2007, men’s labor force participation at age 65 increased by 75% and women’s labor force participation at 65 increased by 147%. Older workers were also more likely to take on full-time schedules and less likely to work part-time than in the past. The U.S. Bureau of Labor Statistics projects an

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84% increase in workers over the age of 75 between 2006 and 2016 and an 83% increase in workers aged between 65 and 74 years in that same time period. An older worker’s ability and interest in continuing to work are fostered by a number of factors including health status, family situations, satisfaction with work, and alternative opportunities for employment. Munnell and Libby (2007) suggest that between 15% and 20% of workers in their 50s and 60s will be unable to continue work due to health problems. They caution that the workers with health problems are also likely to be those who have spent their work lives in low wage jobs, workers who are facing a future of limited income security without public assistance. Maesta and Zissimpoloulos (2010) examine the benefits to the society of older Americans working longer and the underlying factors. Possible explanations for working longer include higher education levels and the less physically demanding jobs associated with more education, twoearner households in which working wives foster continued employment of husbands, and Social Security policies that provide incentives for work including the repeal of an earnings test and incentives to work longer. The authors encourage stronger public policies fostering work as a strategy for address the strain of population aging on economics.

INCOME SECURITY OF OLDER AMERICANS Although the overall percentage of older Americans living in poverty has decreased since 1959 when 35% of Americans over the age of 65 were living in poverty, there are many obstacles to overcome before we can ensure that tomorrow’s older Americans who are unable to continue to work will have a future that includes an adequate standard of living. Financial professionals suggest that retirees need about 70% of their income before retirement to maintain their current standard of living. Today Social Security only provides an average replacement rate of 40%. Since Social Security is a progressive program, low-wage workers receive the highest rate of replacement, with 54% of their wages provided compared with only 28% for the highest earners (Reno & Lavery, 2007). America’s Social Security program is also quite modest compared with that of other countries with developed economies. Out of 30 nations included in a study conducted by the Organisation for Economic Co-operation and Development (OECD), the United States ranks 4th from the bottom for low earners and 9th from the bottom for high earners. Retirees retire

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heavily upon Social Security for their income, and the percentage who rely primarily upon this source of income has increased and is likely to continue to increase in the future. Replacement rates of Social Security are also scheduled to decline in the future because of increasing costs associated with Medicare premiums that are deducted from Social Security payments and as the increase in retirement age from 65 to 67 is phased in. Economic well-being is measured in a variety of ways, including the amount a household has above the poverty level. The poverty level is a gross indicator of the amount of money an individual, couple, or family must have to meet their basic needs. In 2010, the poverty level for an individual was set at $10,803 and for a couple at $14,570. The Elder Economic Security Standard (EESS) was developed by the University of Massachusetts Boston in conjunction with Wider Opportunities for Women (WOW) in 2006. The standard takes into account the place an elder is living and the cost of living by different geographic localities. The calculation includes basic needs such as housing, food, health care, and transportation, as well as personal needs such as clothing. The purpose of the standard is to examine the cost of living without relying on means-tested programs such as food stamps or Medicaid. The first standard was developed in Massachusetts in 2006. The findings suggested that elders living in Massachusetts would need between 150% and 300% of the poverty level to meet basic needs independently. The EESS initiative is ongoing, and through the WOW offices, different states are recruited to develop their own standards and to develop an advocacy plan to address the gap between the “official” poverty rate and the EESS identified for that region. The network developed in Massachusetts, for example, successfully advocated for changes in the state legislation to improve access to health care for more residents. Professor Ellen Bruce, one of the pioneers of the Elder Economic Security Program, shares her insights below.

EXPERT’S CORNER Ellen Bruce, JD Associate Director, Gerontology Institute, UMASS-Boston Boston, MA As I look forward to the next 20 years of elder economic security in the United States, there are a number of issues and policy challenges to consider. First, as we all know, people are living longer and thus will have to support themselves for more years. Second, many of our policies

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regarding income security have not kept up with the times, most notably our means-based programs, which have asset limitations that have not changed in decades. Third, private retirement sources of income have shifted from defined benefit plans to defined contribution plans, giving individuals much more responsibility for funding their own retirement and shifting the economic risk of living longer onto them. Economic security rests both on your income and on your expenses. If your cost of housing is high, you will need more income than if it is low. The Elder Economic Security Standard (EESS), developed at UMass Boston in conjunction with Wider Opportunities for Women, is a new standard that measures how much it costs an elder to live in different parts of the country, depending on their living circumstances (whether they own their own home, are part of a couple, need long-term care, etc.). By measuring the costs specific to states and counties, we can more accurately assess whether seniors in any one part of the country have the income to live without deprivation or income supports. The EESS is a more useful tool than the poverty threshold or poverty guidelines. It is useful to seniors themselves in deciding where to live, to local planners in understanding what services are needed, and to state policy makers in evaluating what programs are needed or should be changed. Most importantly, it can move us beyond the vast generalizations about the elderly to describing specifically the diversity of experiences that elders have in our country. We have known for years that living in the expensive Northeast takes more income than living in the Southwest, and that seniors needing long-term care can quickly become destitute. This tool will allow us to quantify those needs.

The future of economic security for older Americans rests not only in understanding how much it costs to live independently in a specific area of the country and the replacement rates of Social Security but in the viability of our pension system and the other leg of the retirement stool—personal savings and/or continued employment. As policy makers discuss strategies for managing Social Security, it is of critical importance that all of these factors are included in decisions made about Social Security’s future. Working longer may be an option for some Americans, but it is not an option for all. If the pension system in the country continues to change and cover fewer workers, it will be necessary to increase the replacement rates of Social Security.

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OLDER WORKERS AND THE LAWS AND PROGRAMS THAT SUPPORT THEM The Age Discrimination in Employment Act (ADEA) passed in 1967 protected workers between 40 and 65 years of age from discriminatory practices by employers. Prior to the passage of ADEA, employers used age as a criterion for hiring, retention, and promotion. The responsibility for enforcement of the ADEA rests with the U.S. Equal Employment Opportunity Commission (EEOC). In 1986, Congress amended the ADEA to eliminate the upper age limit from the Act, making it illegal to discriminate against workers 40 years of age and over. Today few people would consider a 40-year-old worker as an older worker. An older worker is a term that is generally applied to someone who is 55 years or older. Because of the aging of the Baby Boom generation—Americans born between 1946 and 1964—the majority of workers today are over the age of 40. The aging of the baby boomers will continue to shape the age structure of the workforce through 2020 (Kramer & Nightingale, 2001). The aging of the workforce does not necessarily have a positive effect on discrimination based on age in the workplace (Lahey, 2006). There continues to be a set of stereotypes about older workers that adversely affect their access to training, promotions, and new jobs. Some of the most persistent myths include a lack of flexibility, resistant to new assignments and technology, more apt to have accidents (Berger, 2009). Despite the fact that research has dispelled ageist myths regarding older workers, many employers continue to hold these beliefs and make decisions based upon that belief. It is likely that the ADEA will still be needed in the foreseeable future as the workforce continues to age.

Programs for Older Workers Title V of the Older Americans Act, the Senior Community Service Employment Program (SCSEP) for Older Americans is the mechanism for a large federal program that provides subsidized employment opportunities and training to low-income people 55 years of age and older. The goal of the program is to provide community services and work-related training. Participants work in nonprofit community service or public organizations for an average of 20 hours a week and are paid minimum wage. Wages are paid by the SCSEP, and host organizations are not required to pay for the worker who is placed with them. The program aims to place 30% of

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the participants annually in jobs that are unsubsidized, and training opportunities are provided to achieve this goal. In order to be eligible for participation in the SCSEP, participants must be at least 55 years of age and have a household income of no more than 25% over the Federal poverty level. Priority is given to persons over the age of 60, veterans, and their spouses. “Preference” is given to minority individuals, workers with limited English, Native Americans, and those with the greatest economic need. The Department of Labor manages the SCSEP with the help of grantees who manage the day-to-day operations of an SCSEP. There are 56 states and territorial governments and 18 national nonprofit organizations who receive funding to manage SCSEPs. In 2009, there were 77,758 positions funded by the SCSEP and an additional 12,321 positions that were funded by the American Reinvestment and Recovery Act of 2009. The annual funding for the program in 2009 is $571.9 million, with 22% of the funds provided to states and territories and 78% to the national nonprofit organizations. Most participants are women (70%) and nearly half are minorities. In 2008, 89,300 elders participated in the program, and the program achieved a 48% unsubsidized placement rate. An Environmental Protection Agency (EPA)-based program provides older workers with an opportunity to work on environmental issues as clerical staff, or as technical or professional staff. The Senior Environmental Employment (SEE) Program is a program that was begun in 1984 and is managed by national aging organizations authorized by the Secretary of Labor. The mission of the SEE program is to support the EPA and other agencies to address environmental requirements by using the skills and talents of older workers. Assignments may be temporary and either fulltime or part-time. EPA sets the pay scales, and wages are not market rate wages and are intended to be supplemental for the SEE participants. Participants in the program are also eligible for fringe benefits on a prorated basis. The six national grantee organizations manage the employment of the SEE participants. Both the SCSEP and the SEE programs have missions that include supporting community agencies, in addition to providing “opportunities” for work for people 55 years of age and older. And both programs provide relatively modest pay for the work of the participants. The purpose of having Title V programs managed by the Department of Labor is to ensure that there is coordination between and among employment programs. In 1998, the Workforce Investment Act (WIA) was passed to coordinate and consolidate a number of federal employment programs. The WIA has a priority of serving low-income and welfare recipients but has

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no set targets for specific types of workers. Older workers and disadvantaged workers were subsumed into the larger workforce development “system” by the passage of WIA, including SCSEP. The WIA repealed the Job Training Partnership Act (JTPA) that previously addressed older workers, economically disadvantaged workers, and dislocated workers. Instead of the JTPA goals, the Workforce Investment Boards (WIBs) are asked to integrate systems of employment and set up one-stop centers to meet the needs of workers in their geographic areas. A study by the U.S. General Accounting Office (GAO) conducted shortly after the WIA was enacted examined the effects of this legislative change on older workers. They found that performance measures that are in place for the WIA have limited the access to services and training that would benefit older workers in their search for unsubsidized employment. Out of the estimated 1.3 million Americans between 55 and 90 years of age who were unemployed or out of work and looking forward between July 2000 and June 2001, only 156,000 people or 12% were enrolled in SCSEPs, the Trade Adjustment Assistance Programs (TAA) set up to help dislocated workers, or the WIA programs. The majority of these older workers (68%) were enrolled in the SCSEPs. In addition, the GAO study found that older people were the most likely to receive subsidized community services jobs and job search assistance. Although the research is mixed about the efficacy of a special program for older workers when compared with an age-integrated program, the relatively low percentage of older workers being served by the employment programs seems at odds with the demand for assistance. Our expert commentator, Dr. Hirshorn, makes some recommendations about changes that are needed in the approach to older worker employment services below.

EXPERT’S CORNER Barbara Hirshorn, PhD Independent Researcher For employment and work-related training of older people, most attention in the aging network focuses on the Senior Community Service Program (SCSEP), Title V of the Older Americans Act (OAA). Title V provides an average of 20 hours per week of subsidized employment at community-based public or nonprofit “host agency” organizations

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(e.g., the local Department of Motor Vehicles; the local Red Cross office) as well as skills and job search training. However, historically, the program has serviced only a small fraction of a much larger eligible population. Moreover, the current recession has exacerbated demand for service. Discussion of possible changes in SCSEP for the OAA 2011 reauthorization include increasing the economic status upper end to 200% of poverty, increasing the annual program funding level to $700 million per year from its current funding level of approximately $500 million, eliminating the stipulation that the applicant be unemployed, and lowering the eligibility age to 52 or older (House of Representatives, 2010). For the past 12 years, the aging network and its older clients have accessed the “adult and dislocated workers” component of the Workforce Investment Act (WIA) of 1998, administered through local workforce investment board (WIBs) as a “one-stop” system of employment and training services. Purportedly for people of all ages and income levels, older users often have met with limited success using the “one-stop” system because of programmatic and performance goal incompatibilities, particularly regarding working in a complementary fashion with local SCSEP projects. Reauthorization of the WIA has been discussed at length but is currently tabled (as of Spring 2010). The current environment is marked by economic turbulence and a larger and increasingly diverse older population. Along with what I have observed up to the present regarding “aging network” employment and training, this fast-changing context leads me to suggest the following strategies. I. Launch a serious, nationwide effort to coordinate the activities and resources of SCSEP (Title V) and the “One-Stop” system. A. Formalize and incentivize the informal structural and operational relations between SCSEP and the One-Stop apparatus at the national, state, and local levels. This involves ensuring that there is real follow-through on Memoranda of Understanding and coordination plans regarding sharing of space and joint operational and strategic planning. B. Enhance joint activities between the two programs: more jointly sponsored activities, such as job fairs, potential employer briefings, and marketing activities; regularly scheduled staff meetings; sharing of tips and leads on both potential employers and job

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applicants; and, definitely, greater inclusion of SCSEP enrollees in One-Stop training workshops. C. Reconcile the differing performance goals of SCSEP and the “One-Stop” system so that older residents’ employment and training needs can be better accommodated. Start by eliminating the One-Stop reporting emphasis on full-time workers. In this economy, it makes no sense anyway. II. Modernize and reorganize all employment and training programs serving older adults. A. For all employment and training programs involving older clients, formalize and incentivize local public/for-profit/nonprofit collaborative partnerships. This means building strong local alliances that include employment and training organizations but are broader substantively. For example, they might also include services in the following areas: housing, transportation, adult social services, and primary care and dental care. These collaborative structures are essential both to strengthen training opportunities and to account for “whole person” needs. 1. Formalize and incentivize full-spectrum, local employment, and training networks. (a) Substantively: Build networks that include organizations focusing on different, but often overlapping, community populations—for example, disabled workers, veterans, older workers, displaced workers, youth, and homemaker reentrants. (b) Jurisdictionally: Develop a strong plan among U.S. Department of Labor constituent programs (e.g., disability, SCSEP, WIA) to ensure stronger coordination not only at the local level but also at the state level. This requires resources as well as guidance. 2. Respond to the needs of rural older residents and others with particularly challenging training and job access issues. (a) This is of critical importance for the aging network because of especially meager employment opportunities in rural environments and the broad geographic dispersion of clients and training sites. For rural residents, as well as others for whom training and job access are problematic, it is time for some real programmatic innovation involving advances in the use of information

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technology and home-based activity. Important here is the expansion of online training and employment opportunities stressing a “home office” or “home workshop/ production area.” It also means focusing on providing training that can be cross-directed at a range of jobs, occupations, and industries requiring the same or similar skill sets. 3. Attend to needs of “special older worker populations,” particularly: (a) Older clients with limited English language skills and a range of cultural traditions regarding work for pay and activities out of the home setting. (b) Older women who have been out of the labor force or minimally in the labor force over the life course. (c) Older clients who have chronic physical health problems which, nevertheless, do not exclude them from the labor force.

EMPLOYMENT PATTERNS OF OLDER AMERICANS IN 2009 As mentioned earlier, older Americans have increased their labor participation at historic rates since 2001. In fact, the trend toward early retirement among older men has all but disappeared. Women’s labor force participation continues to increase significantly among women 55 years of age and older. The trend of continued employment into late life is expected to continue, but the current economic recession is creating some challenges for older workers (Johnson et al., 2008). Although older workers have been more likely than younger workers to remain employed during this recession, the unemployment rates for older workers have been setting records as they soar to the highest levels in six decades. Women’s unemployment rates were lower than men’s but reached 7% for women between 55 and 64 years of age and 7.3% for women aged 65+ (Johnson & Mommaerts, 2010). Unemployment rates by industry were also record-breaking. Older construction workers in 2009 had a 14% unemployment rate. And older Hispanic and African American men had the highest rates among older workers, with 11% and 10%, respectively, compared with 6% of White workers. The duration of unemployment was higher than previous patterns as well for older

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workers. Nearly half of the unemployed men between 55 and 61 years of age had been out of work for more than 6 months in December 2009. Nearly two-thirds of the women between 62 and 64 years of age were out of work for more than 6 months during that same time period. In the review of older workers status during 2009, Johnson and Mommaerts offered a few theories about why both men and women had been experiencing protracted periods of unemployment, including discrimination by employers related to the expense associated with older, experienced workers, concerns about productivity, or a lack of skills. Given the increasing interest in continued employment by older workers, it is important that this sector of the workforce receive their share of the publicly funded employment services. It is likely that the majority of older workers who are out of work or underemployed are seeking jobs or income-producing opportunities that exceed a part-time subsidized community service placement. Although the SCSEP is important to one segment of the older worker population, there is a burgeoning segment of this population who are seeking targeted services to help them move into a work situation that is likely to continue for many years. The alternatives of early retirement, on-time retirement with limited means, subsidized part-time employment, or volunteer opportunities are likely to be the road “less traveled” for many of the Baby Boom generation.

DISCUSSION QUESTIONS 1. How is the equation for retirement changing and what does this mean for your own retirement? 2. Do you think that discrimination against older workers will persist as the number of older workers increases? REFERENCES Berger, E. (2009). Managing age discrimination: An examination of the techniques used when seeking employment. The Gerontologist, 49(3), 317– 332. Costo, S. (2006). Trends in retirement plan coverage over the last decade. Monthly Labor Review, February, 129, 58 –64. Federal Interagency Forum on Aging-Related Statistics. (2008). Older Americans 2008: Key indicators of well-being. Federal Interagency Forum on Aging-Related Statistics, Washington, DC: U.S. Government Printing Office, March 2008. Harrington Meyer, M. (2009). Why all women (and most men) should support universal rather than privatized social security. In L. Rogne, C. Estes, B. Grossman,

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B. Hollister, & E. Solway (Eds.), Social insurance and social justice. New York, NY: Springer Publishing Company. House of Representatives bill HR4819 “To amend the Older Americans Act of 1965 to expand the Senior Community Service Employment Program”. 111th Congress, 2d session, March 10, 2010. Johnson, W., & Mommaerts, C. (2010). How did older workers fare in 2009? Retirement Policy Program, Washington, DC: The Urban Institute. Retrieved May 5, 2010, from http://www.retirementpolicy.org Johnson, W., Soto, M., & Zedlewski, S. (2008). How is the economic turmoil affecting older Americans? Retirement Policy Program, Washington, DC: Urban Institute. Retrieved March 15, 2010, from http://www.retirementpolicy.org Kramer, F., & Nightingale, D. (2001). Using the workforce investment act to service mature and older workers. Washington, DC: The Urban Institute. Retrieved June 1, 2010, from http://doleta/gov/seniors Lahey, J. (2006). How do Age Discrimination Laws affect older Workers? Center for Retirement Research at Boston College (Issue Brief No. 5), October 2006. Maesta, N., & Zissimopoulos, J. (2010). How longer work lives ease the crunch of population aging. Journal of Economic Perspectives, 24(1), 139–160. McGarry, K., & Schoeni, R. (2000). Social security, economic growth, and the rise in elderly widows’ independence in the twentieth century. Demography, 37(2), 221 –236. Munnell, A., & Libby, J. (2007). Will people be healthy enough to work longer? Center for Retirement Research at Boston College Issue Brief, Number 2007-3. Retrieved April 10, 2010, from http://crr.bc.edu Reno, V., & Lavery, J. (2007, May). Social security and retirement income adequacy. Social Security Brief, (Issue Brief No. 25). National Academy of Social Insurance. Retrieved June 15, 2010, from http://www.nasi.org Schulz, J. H., & Binstock, R. H. (2006). Aging nation: The economics and politics of growing older in America. Baltimore, MD: The Johns Hopkins University Press. Senior Environmental Employment (SEE) Program. (2008). Retrieved November 19, 2008, from http://www.epa.gov Steuerle, C. E., Carasso, A., & Cohen, L. (2004). How progressive is social security and why? The Retirement Project, No. 37. Washington, DC: Urban Institute. Retrieved November, 2009, from www.urban.org/retirement U.S. Bureau of Labor Statistics. (2008). BLS spotlight on statistics: Older workers. Retrieved January 20, 2009, from http://www.bls.gov/spotlight. U.S. General Accounting Office. (2003). Older workers. GAO-03-350. Retrieved June 15, 2010, from www.gao.gov

6

Volunteerism and Civic Engagement BACKGROUND Volunteering is a tradition in American community life. Churches and synagogues as well as nonprofit social service and civic organizations rely upon volunteers to achieve their mission, and local governments everywhere use volunteers in the schools, in libraries, in park departments, and in positions of leadership. Older adults have been the backbone of the volunteer network for many organizations and communities. Herzog and Morgan (1993) report that, in 1986, 35% of Americans over the age of 55 reported volunteer service as respondents in the American Changing Lives Survey. The religious community was the largest beneficiary of this volunteer service, with 24% of the respondents reporting volunteering for their faith community. The remaining respondents’ aged 55+ were volunteering in senior citizens groups (10%), political activities (6%), and educational settings (6%). This survey also revealed that those with higher levels of income and education were more likely than others to be involved in volunteer activities. However, nearly half of the respondents reported they would like to volunteer and, of those who were involved in volunteer activities, one in five reported they wished they could spend more time volunteering. Productive aging as conceptualized in the 1993 book edited by Bass, Caro, and Chen is a concept that would move societal contributions of older adults beyond the traditional economic-based definitions of productivity. Volunteering in the community and making contributions of time and resources would expand the definition of productivity. Morris (1993, p. 293), writing about the future of productive aging, suggests that giving volunteerism a place at the table when public policy is discussed is a good place to start. It is, according to Morris, important to get “. . . agreement that everyone is needed throughout their life span, needed for their personal well-being and for society’s well-being.” 69

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Since the late 1980s and early 1990s, volunteerism has been elevated in both the public’s perception and as a legitimate investment for philanthropy and public funds. In part this is due to concerns over the size of the Baby Boom generation and interest in harnessing the power of this size toward positive contributions to the community. Volunteerism is often referred to as “civic engagement” rather than volunteerism. The National Governor’s Association’s Issue Brief on Volunteerism (2008) points out that there are benefits to states in fostering volunteerism within their communities and encourages states to foster volunteerism among state employees before they retire, to reduce barriers to volunteerism by improving access to transportation, and creating networks to link older adults with opportunities. According to one estimate, volunteering among older adults provides $162 billion annually for the economy (Johnson & Schaner, 2005). In an analysis of the 2002 Health and Retirement Study (Zedlewski & Shaner, 2006), it was found that approximately 60% of those over 55 are involved in some type of volunteer activity—20% report involvement in both formal and informal volunteer work, 30% involvement in only informal volunteer work, and 10% in only formal volunteer work. The analysis also found that more people 55+ who are employed volunteer than those who are no longer working. However, those who are retired report spending more time in volunteer activities than those who are still in the workforce. There is ample evidence to suggest that the benefits of volunteering are not only limited to the community but also accrue to the older volunteer. As reviewed in Zedlewski and Schaner (2006), some studies have found that those who volunteer live longer and are in better physical and mental health than those who do not volunteer. One study found that both volunteering and work reduce mortality rates. Tan, Xue, Li, Carlson, and Fried (2006) report that a “high-intensity” intergenerational volunteer program was successful in fostering activity among elders who previously had not been physically active and sustain high activity levels among active elders. There appears to be plenty of benefits of volunteerism or civic engagement, and, today, there is also a wide range of opportunities for this activity.

AN ARRAY OF VOLUNTEER OPPORTUNITIES There are numerous opportunities available to older adults who wish to serve as volunteers. Older persons are recruited and seek out opportunities to engage with their communities and volunteer in a variety of settings. These opportunities include volunteering at the local library, school, or

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other community organization. In addition to general voluntary efforts, there are a number of programs oriented specifically to recruiting older persons as volunteers. At the federal level, the most important efforts are those administered through the National Senior Volunteer Corps, a component of the Corporation for National and Community Service (CNCS). The programs most directly geared toward older persons include the Retired Senior Volunteers Program (RSVP), the Foster Grandparents Program (discussed in Chapter 14), the Senior Companions Program (SCP), and the Service Corps of Retired Executives (SCORE). Work continues in the development of civic engagement and service opportunities. In 2009, President Obama signed into law the Edward M. Kennedy Serve America Act. The new law expands volunteer opportunities for millions of Americans while at the same time providing resources for local communities. Another nod to the future is evidenced in the OAA Amendments of 2006, which places the role of volunteers prominently and provides the support needed to enhance Older Americans Act (OAA) programs. CIVIC ENGAGEMENT AND THE AGING NETWORK Civic engagement activities are authorized through the following legislation: Title I, Section 102 14 (d); Title II, Section 202 4(c); Title III, Section 373 (d); and Title IV, Section 417. According to the Administration on Aging (AoA), the OAA Amendments of 2006 highlight the role of volunteers as a strategy to support and enhance OAA programs. The amendments: B B

B

Provide guidelines for the use of volunteers at all levels in OAA programs; Provide for multigenerational and civic engagement demonstration grants that encourage community capacity-building involving older individuals and demonstrate effectiveness and cost savings in meeting critical needs; and Call for collaboration between the AoA and the Corporation for National and Community Service (CNCS) in modernizing the way community-based organizations utilize older adults as volunteers.

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Looking to the future needs and interest with regard to volunteerism and civic engagement, the AoA is partnering with the CNCS, the Atlantic Philanthropies, and MetLife Foundation to fund a 3-year project aimed to support local community programs involved in volunteer and civic engagement work. The recipient of the funding, the National Council on Aging (NCOA), will be exploring programs that they hope will become national models for older volunteerism. According to the AoA, “projects will focus on three target populations: (1) older relatives caring for grandchildren; (2) families caring for children with special needs; and (3) caregivers of frail elderly (www.aoa.gov).” Retired Senior Volunteers Program: RSVP RSVP is authorized under Title II, Part A, of the Domestic Volunteer Service Act of 1973, as amended (Public Law 93– 113) The roots of the RSVP can be traced back to a pilot program developed by the Community Service Society of New York in 1965. This project attempted to enlist older adults in volunteer work in the community and make use of their talents and experience. The planners of project SERVE (Serve and Enrich Retirement by Volunteer Experience) hoped that the involvement of the elderly in the program would provide them with a renewed sense of self-esteem and satisfaction while filling important gaps in community resources. RSVP holds forth that same tradition today and is now the largest volunteer organization in the country, with nearly 500,000 volunteers aged 55 and older. According to the 2008 RSVP Overview, there are currently 40,000 Baby Boomers serving in the program. Programs are locally planned and sponsored. Local communities must fund a portion of the program, up to 30%. Volunteers typically work in “volunteer stations,” which include courts, schools, long-term care settings, day care centers, and hospitals. According to a 2005 report by the CNCS, there are approximately 750 local RSVPs, volunteers have given 78 million hours of service in 65,000 volunteer stations, and have served tens of millions of people (Corporation for National and Community Service, 2005). RSVP community services include: B B B B B

Tutoring children in reading and math; Building houses; Helping get children immunized; Modeling parenting skills to teen parents; Participating in neighborhood watch programs;

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Planting community garden; Providing counsel to new business owners; Offering relief services to victims of natural disasters; and Helping community organizations operate more efficiently (www. seniorcorps.org).

Senior Companions The Senior Companions Program is authorized under Title II, Part C, of the Domestic Volunteer Service Act of 1973, as amended (Public Law 93 – 113) The SCP, authorized in 1973, is focused on connecting older adult volunteers with other older adults who may need some form of assistance with their daily activities. The SCP is different from other programs in that it is peer oriented. In other words, volunteers and recipients are similar in age and therefore seen more as companions. Some of the services provided include: B B B B

Offering companionship and friendship to isolated and frail adults; Assisting with simple chores; Providing transportation; and Adding richness to their clients’ lives.

A 2005 report of the SCP provides the following highlights: B B B B B

224 grantees 16,355 volunteers 14 million hours served 5,000 volunteer stations Hundreds of thousands of clients served, primarily frail older adults

Service Corps of Retired Executives (SCORE) The Small Business Act was signed into law by President Dwight D. Eisenhower in 1953, creating the U.S. Small Business Administration (SBA). The law stated the federal government “should aid, counsel, assist and protect the interests of small business.” Founded in 1964, SCORE is funded in part by a congressional grant from the United States Small Business Administration. SCORE places retired executives in small businesses, where the volunteers have an opportunity to provide expertise. SCORE volunteers are seen as “Counselors to America’s Small Business” and are “dedicated to educating entrepreneurs

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and helping small business start, grow and succeed nationwide.” There are currently 364 SCORE offices in the United States and approximately 12,400 volunteers who have helped over 8.5 million businesses (www.score.org). Services provided by volunteers in person and online include: B B B B

Free and confidential small business advice for entrepreneurs Workshops One-on-one counseling Resources for women, minorities, manufacturers, military veterans, baby boomers, young entrepreneurs, and rural entrepreneurs (www.score.org)

Experience Corps: A Public – Private Venture Experience Corps is a nonprofit organization that places elders in the schools to work with students with great need. Research has demonstrated that this partnership program has the potential to make a dramatic difference in the educational achievement of the children as well as their adjustment and behavior. This program receives support from the CNCS, as well as private foundations, including The Atlantic Philanthropies, Deerbrook Charitable Trust, and the Robert Wood Johnson Foundation. The elder volunteer tutors have benefited from their work with Experience Corps on physical, mental, and social well-being indicators. Special mental health treatment programs have been found in only 34 skilled nursing facilities, accounting for only 3,384 beds of the more than 1 million total (Stortz, 2003). DISCUSSION QUESTIONS 1. Were you engaged in community service activities before you started college? Did this involvement influence your attitudes about volunteerism? 2. Discuss some of the elements that a good volunteer program needs in order to engage an older adult who might be employed or retired. Do you know any older adult who volunteers? REFERENCES Accomplishments of RSVP. (June 2005). Corporation for National and Community Service. Retrieved January 16, 2010, from http://www.seniorcorps.gov/pdf/ 06_0327_SC_RSVP.pdf

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Administration on Aging. (2010). Programs: Civic Engagement. Retrieved on February 9, 2010, from http://www.aoa.gov/AoARoot/AoA_Programs/ Special_Projects/Civic_Engagement/index.aspx Administration on Aging. (2010). Programs History, Civic Engagement. Retrieved February 9, 2010, from http://www.aoa.gov/AoARoot/AoA_Programs/ Special_Projects/Civic_Engagement/index.aspx#history Experience Corps. (2010). Retrieved March 18, 2010, from www.experiencecorps. org Herzog, R., & Morgan, J. (1993). Formal volunteer work among Older Americans. In S. Bass, F. Caro, & Y. Chen (Eds.), Achieving a productive aging society. Westport, CT: Auburn House. Johnson, R. W., & Schaner, S. G. (2005). The Value of Unpaid Activities by Older Americans Tops $160 Billion Per Year. Washington, DC: The Urban Institute. Retrieved May 5, 2010; from http://www.urban.org/publications/311227.html Morris, R. (1993). Conclusion: Defining the place of the elderly in the twenty-first century. In S. Bass, F. Caro, & Y. Chen (Eds.), Achieving a productive aging society. Westport, CT: Auburn House. National Governor’s Association. (2008). Increasing volunteerism among older adults: Benefits and strategies for states. NGA Best Practice Issue Brief. Retrieved June 29, 2010, from http://www.nga.org National Service Corps. (2010). Programs, Senior Corps. Retired Senior Volunteer Program. Retrieved, February 10, 2010, from http://www.nationalservice.gov/ about/programs/seniorcorps_rsvp.asp National Service Corps. (2010). Programs, Senior Corps. Retrieved February 10, 2010, from http://www.seniorcorps.gov/about/programs/sc.asp National Service Corps. (2010). Programs Overview. Senior Corps. Retired Senior Volunteer Program. Retrieved February 10, 2010, from http://www.senior corps.gov/pdf/overview_rsvp.pdf Senior Corps of Retired Executives (SCORE). (2010). Retrieved February 10, 2010, from http://www.score.org/explore_score.html Stortz, M. (2003). A tale of two settings: Institutional and community-based mental health services in California since realignment in 1991. Retrieved April 19, 2010, from http://www.disabilityrightsca.org/pubs/540301.ht Tan, E., Xue, Q., Li, T., Carlson, M., & Fried, L. (2006). Volunteering: A physical activity intervention for older adults—The Experience Corps Program in Baltimore. Journal of Urban Health: Bulletin of the New York Academy of Medicine. doi: 10.1007/s11524-006-9060-7 Zedlewski, S., & Schaner, S. (2006). Older adults engaged as volunteers. Perspectives on productive aging: The Retirement Project, Number 5, May 2006. Urban Institute. Retrieved June 29, 2010; from http://www.urban.org

7

Physical and Mental Health for Older Adults INTRODUCTION “The challenge today is to build a world that is just as responsive to the needs of very old people as to the very young (Carstensen, 2010).” Carstensen’s quote is a reminder that although policies and programs aimed at meeting the needs of older adults are well intentioned, they often fall short of desirable outcomes. Attempts to provide medical care for the elderly have met a variety of roadblocks, including (1) the lack of interest by physicians in treating individuals whose conditions are not “curable,” (2) the high costs of medical care, (3) the inaccessibility of medical treatment, and (4) ageism. These problems are also endemic in mental health treatment of the elderly. This chapter will address the primary health and mental health programs and services available to older adults, the interface between these programs and the older patient, barriers to high-quality care, and the key issues that the aging network faces in the future in quality care for the physical and mental health of older Americans.

HEALTH STATUS OF OLDER AMERICANS Americans are living longer lives than in the past, and most are also spending these years in relatively good health. Life expectancy at age 65 is an average of 18.7 more years, and for women who live to be 85 years of age, their average life expectancy is more than 7 additional years, for men 6 additional years. Japan continues to have the highest life expectancy of all nations—an average of 3+ years more than that of an American 77

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elder (Federal Interagency Forum on Aging-Related Statistics, 2008). Not only are Americans living longer lives, they are living these lives with more years of good health. Disability rates have been dropping for older people (Manton et al., 1997), and Freedman, Martin, Schoeni, and Cornman (2008) suggest that better education and lifetime occupation, as well as other socioeconomic factors, play a role in this drop. The “compression of morbidity” paradigm suggests that old age can be a time of relative health and functionality, despite the presence of chronic illness (Fries, 2005). Chronic diseases are illnesses that are managed rather than “cured” and are the most common health issues facing older adults today. The most common chronic conditions are hypertension, heart disease, arthritis, cancer, and diabetes (Federal Interagency Forum on Aging-Related Statistics, 2008). The prevalence of chronic illness varies by gender, race, and ethnicity. Despite the prevalence of chronic illness, most older adults enjoy relatively good health and do not experience functional limitations in performing their activities of daily living. More than half of the persons 65+ had no limitations. Functional limitations are most common among the older population (80+). There are many barriers to quality health care facing older adults today. These include low health literacy, a lack of geriatrically trained physicians and health-care providers, a health-care system that is largely based on “fee for service” and provides incentives for testing and procedures that may not be essential to the health of the patent, an over-reliance on pharmaceuticals, and a lack of consistent management in the primary care setting and in transitions between one setting and another. In a cross-national analysis of patients with chronic conditions in eight countries, Schoen, Osborn, How, Doty, and Peugh (2008) found that patients in the United States were at particular risk due to a lack of insurance coverage—nearly one-third had no health insurance. Other countries in the study offered universal health coverage. However, the study also found that, in the United States, even those with health coverage were more likely to suffer because of a lack of coordination of their care. Health system research suggests that, for older adults with chronic illness, care transitions can be particularly problematic. Coordination and care management by a primary care physician is often either lacking or sporadic, and this leads to negative outcomes for the older patient. Levine, Halper, Peist, and Gould (2010) argue that, in the absence of a system with procedures for coordination, it is imperative that the family caregiver who has been involved in the health trajectory of the patient be integrated into the care

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planning and recognized by trained health providers for the role they can play in helping patients manage transitions. While there are many opportunities to improve health care for older adults, this population is one of the only groups in the United States with universal access to health care as a result of Medicare and Medicaid. As this book goes to press, there are dramatic changes taking place in the U.S. health-care system as a result of the health-care bill enacted on March 23, 2010 that has implications for all Americans, including those who are now Medicare beneficiaries.

THE PATIENT PROTECTION AND AFFORDABLE CARE ACT (PPACA, P.L. 111 –145, Enacted March 23, 2010) March 23, 2010, is an important date in the ongoing decade-long debate over health care in the United States. President Obama signed into law this landmark health reform bill. The implications of this act for today’s elders include the following highlights. This is a partial list of changes that will occur as a result of the Act: B

B

B B B B B

Changes to the Medicare Advantage programs designed to provide savings to the Medicare Trust Fund that, without intervention, were scheduled to be depleted by 2017. The development of an “Independent Medicare Advisory Board” that will make recommendations for Medicare cost savings. The Board is also required to make recommendations about systemwide health care, utilization, and quality of health care that would improve the quality of care while slowing the growth of health-care costs. Provide short-term changes to minimize the effect of the coverage gap associated with Part D of Medicare. Medicare would cover with no deductible an annual wellness exam and a prevention assessment and plan. Modify the spousal impoverishment statute to require the states to include this protection in their waiver programs. Includes the Community Living Assistance Services and Supports (CLASS) Act described later in this chapter. Incentives for care coordination through the Independence at Home demonstration program (Gerontological Society of America, 2010).

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Much of the changes to the health-care system of the Patient Protection and Affordable Care Act (PPACA) will not be manifested for several years. As this is being written, the details of the major provisions of the Act are being planned and managed through the Centers for Medicare and Medicaid Services (CMS), the Department of Health and Human Services (DHHS), and other federal agencies.

MEDICARE Medicare was passed in July 1965 with a goal of ensuring that Americans over the age of 65 have access to health care. At that time, most older adults were not able to gain access to health insurance, and coverage associated with retirement benefits was available to a small group of elders (Moon, 1996). Medicare was passed as a social insurance program that would cover all people over the age of 65. After a period of universal coverage for all older adults, Medicare became a program that was available only to those who were 65 years of age and who were entitled to Social Security benefits. After the benefits were expanded in 1972 to include persons with disabilities and those with end-stage renal disease, the program and the costs of sustaining the program began to concern policy makers, and we entered a period of cost-cutting initiatives that continues to this day. Efforts to control costs have included limits on payments to providers and hospitals and increases in costs paid by beneficiaries. Medicare has two primary programs: Part A, which is hospital insurance covering hospital stays with co-pay requirements; Part B covers doctor’s services and selected preventive care. There is also a Part C, which is an option for coverage in a Medicare Advantage plan such as a Health Maintenance Organization (HMO) or Preferred Provider Organization (PPO). These plans cover more than the traditional Part B and often include prescription drugs, as well as other services. The newest section of Medicare is Part D, which is prescription drug coverage passed in 2003 (Kaiser Family Foundation, 2009). Medigap policies are available through private insurance companies and cover some costs not covered by Medicare plans. When Part D was enacted by Congress and signed into law by President Bush, the program was hailed as a wonderful benefit for Medicare beneficiaries. It was seen as a mechanism for ensuring that older adults would not have to forego their medication because of the costs.

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Unfortunately, the legislation also included a provision that prevented CMS from negotiating drug costs with pharmaceutical companies, as is done by the Veteran’s Administration—to the benefit of VA patients. Under the new Patient Protection and Affordable Care Act, there are provisions to address some of the problems associated with the “donut hole”. The donut hole is a period of time when Part D covers none of the costs of prescription drugs. This begins after the beneficiary pays the required $250 co-pay and has used $2,500 worth of prescription drugs. The period of noncoverage extends until the beneficiary has a total of $5,100 worth of medication costs, at which time Medicare will pay 95% of all remaining medication costs, under the catastrophic cost provision. The 2010 Act includes a provision that provides a check for $250 for all Part D beneficiaries and a new provision beginning in 2011 that will cover 50% of all medications that are brand name medications when they enter the donut hole period. In addition, beginning in 2011, beneficiaries will receive a 75% discount on generic drugs. It is a complicated program and one that has had many beneficiaries confused about their many options and the requirement that they select a plan or face a penalty if they decide later to take up Part D benefits. Most older adults who can afford to do so put together a mix of coverage that includes Medicare and Medigap. For elders who have low income, Medicaid is an important source of coverage. Medicaid also is an important source for long-term care. According to the Administration on Aging (AoA), in 2007: B B B B

Ninety-three percent of the noninstitutionalized persons 65 years of age and older had Medicare coverage; Fifty-nine percent were covered by private health insurance; Nine percent of the noninstitutionalized older adults were covered by Medicaid; and Eighty-seven percent of the noninstitutionalized Medicare beneficiaries had supplementary coverage.

PAYING FOR HEALTH CARE In 2008, the total health-care cost in the United States was $7,681 per person. The total health expenditure was $2.3 trillion, representing more than 16% of the gross domestic product (GDP) (KaiserEdu.org, 2010a). Medicare expenses in 2008 were $425.5 billion (United States, DHHS,

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2010). Paying for this health care is done through a mix of federal spending, state spending, or personal consumer spending. Health-care costs have been growing at a rapid rate and are expected to continue to increase in the future. Although it might appear that the increase in the number of older Americans, frequent users of health-care services, was fueling this increase in spending, most health-care professionals agree that this is only a small part of the increase in health spending and costs of health care (KaiserEdu.org, 2010b; Jenson, 2007). Although older Americans are more likely than any other age group to use health-care services, other factors are driving health-care costs more significantly than the growth of this population. Other factors include technology and pharmaceuticals, chronic disease, and administrative costs. The cost of prescription drugs has grown faster than that associated with doctor’s visits and hospitalization and is expected to continue to do so in the future. As policy makers seek strategies to limit the increase in health-care costs, the cost sharing by individual consumers is increasing. Out-of-pocket spending for health care is significantly higher for older adults than for working age adults and is particularly burdensome for low-income elders and older women (Desmond, Rice, Cubanski, and Neuman, 2007). In 2005, Medicare beneficiaries’ out-of-pocket spending averaged $4,394. Medicare premiums represented about 1/3 of the out-of-pocket spending, and the remainder ($2,867) went toward health service co-pays. Women have higher out-of-pocket spending than men and, on average, spend between 32% and 40% of their income on this item compared with men who spend between 23% and 35%. Beneficiaries lacking Medigap coverage spend an average of $6,574. And finally, in the study conducted by AARP, 10% of the beneficiaries spent more than half of their income on health-care services (AARP, 2009). MEDICAID Medicaid is the federal program, implemented by the states, that covers low-income persons and persons with disabilities. States receive funds from the federal government to manage the financing of health-care services for low-income persons. States also develop Medicaid Waiver programs that allow low-income elders to remain in the community rather than move into a nursing home or other institution. These programs, depending on the state, cover adult day services, home improvement services, and other programs and services that support elders in their own homes. Programs offered under the Medicaid Waiver (Sect. 1915) can

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include hospital and nursing home services, as well as nonmedical services such as respite care or case management services. The program offerings are determined by each state. The 1999 Olmstead Supreme Court decision determined that all individuals are entitled to receive services in the setting of their choice. This decision has fostered an interest in models of care that permit older people and people with disabilities to remain in the community. To commemorate the 10th anniversary of this important decision, on June 22, 2009, President Obama announced the “Year of Community Living” initiative. The initiative underscores the civil rights of persons with care needs and encourages policy makers to use new tools for community integration of elders and persons with disabilities. Medicaid waiver funds also support the programs that allow an older person to pay for a caregiver of his or her choice, including an adult child or other relative or other services or products that are needed by the individual. For example, Medicaid Waivers help to support consumer-directed programs (also known as participant or self-directed service programs). These programs emerged as a result of research from the Cash and Counseling Demonstration and Evaluation (CCDE) project sponsored by the Robert Wood Johnson Foundation, the Office of the Assistant Secretary for Planning and Evaluation in the United States Department of Health and Human Services (ASPE/DHHS), and the Administration on Aging (AoA). The CCDE began in 1998 and Boston College was selected as the National Program Office (now known as the National Resource Center for Participant-Directed Services) for the CCDE (cashandcounseling.org). The self-directed service model is an alternative to traditional. The selfdirected service model is an alternative to traditional agency-centered models of services. The elders are supported by counselors or consultants who assists them with financial management, budgeting, and payroll tasks if caregivers are paid with their funds. Medicaid is a primary source of financing for hospital services and nursing home services. Nursing homes, on average, cost more than $72,000 in the United States. Medicare pays for a stay in a nursing home to recuperate after a hospital stay. However, they only pay in full up to 20 days. After that, Medicare covers the difference between the required co-payment of $137.50 per day between 21 and 100 days. After that point, Medicare does not cover any of the costs of nursing homes. Older adults who need long-term care in a nursing facility are required to spend their own funds until such time as they are eligible for Medicaid. Today, Medicaid pays 49% of the total costs of long-term care (U.S. DHHS, 2010).

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LONG-TERM CARE Long-term care is a term that describes a wide range of services that are provided in the community and in institutions for people who have functional limitations and need help managing activities of daily living or instrumental activities of daily living. Activities of daily living are basic activities such as bathing, toileting, feeding, transferring, or dressing; instrumental activities of daily living are activities such as transportation, dealing with financial matters, getting medication assistance, shopping or doing errands, and the like. The percentage of elders who reside in a nursing home has been decreasing in the past decades and is currently less than 5%. The majority of elders who need and receive long-term care services do so at home. The long-term care population is estimated to include 10.9 million community residents, of whom half are younger than 65 years, and 1.8 million nursing home residents who are primarily older persons (Kaye, Harrington, & LaPlante, 2010). Of the long-term residents who live in the community, 92% of them are helped by family and friends on an unpaid basis and 13% use paid help. Long-term care provided in the community through a system of home and community services is paid for by a combination of Medicare home health benefits for those who are eligible to receive them and out-of-pocket spending. Medicare also pays for a limited amount of institutional care after hospitalization. After the Medicare benefit ends, extended stays are covered by personal funds. While Medicaid covers the cost of continued care and is considered the primary provider of longterm care, research indicates that family and friends contribute an estimated $375 billion a year in uncompensated services (Levine et al., 2010). Many individuals do not have family and friends to turn to for services and supports and/or have limited resources themselves. In addition, some older adults find that they are not eligible for Medicaid based on their income and assets. Some individuals make the decision to “spend down” in order to qualify for Medicaid long-term care services (Medicaid.gov).

THE PROGRAM FOR ALL-INCLUSIVE CARE FOR ELDERS (PACE) PACE is one of the most successful efforts to provide interdisciplinary health care for older adults. In San Francisco’s On Lok Senior Center, the model of PACE began to evolve in the early 1970s. In 1973, On Lok (Cantonese for “peaceful, happy abode”) started an adult day program—the first in San Francisco. After receiving Medicaid reimbursement for adult day health services, the On Lok center continued to add on services until it

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included total medical and social care for its participants (Kornblatt et al., 2002). With a grant from the federal government, On Lok developed a capitated program for its elders that evolved into the PACE model. PACE now has 72 sites in 30 states that serve frail elderly who are eligible for nursing home care (NPAonline.org). PACE assumes responsibility for all of the services they need, including prescription medication, adult day services, social work and personal care, respite care, and hospital and nursing home care when necessary. If it becomes necessary for a PACE participant to enter a nursing home, they continue to be covered under the PACE program, and their care is paid for and coordinated by PACE staff.

THE COMMUNITY LIVING ASSISTANCE SERVICES AND SUPPORTS (CLASS) ACT The CLASS Act was enacted under The Patient Protection and Affordable Care Act passed in 2010. This program will result in a new federal program to help people over the age of 18 pay for long-term care services. The benefits in the CLASS Act will be financed entirely by premiums that are paid on a voluntary basis by participants and will not be supported by public funds (National Health Policy Forum, 2010). DHHS will administer the program. Specific details about the program are being developed by DHHS. However, the CLASS Act language includes eligibility—persons 18 years or older who are in the workforce and who receive either wages or self-employment income. It is not lawful to institute any underwriting requirements for participation. However, people who are currently receiving Medicaid or living in nursing homes or mental institutions or who have mental retardation are not eligible. Participants will receive cash payments of, on average, $50 per day. There is no lifetime limit of benefits. Beneficiaries of the CLASS Act may use their funds for any supports they choose, including nonmedical services and cash payments to family members who are providing care. The Secretary of Health and Human Services will set an annual age-adjusted premium. Employers can participate in the CLASS Act on behalf of their employees by collecting their premiums and submitting them to the program; alternative payment mechanisms will be established for those who do not have a participating employer. There is a timeline that must be followed for setting up the benefit and beginning the program. This voluntary long-term care program is likely to alter the landscape of long-term care insurance and financing. Ideally, it will provide an alternative to a somewhat limited range of options available for long-term care.

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EVIDENCE-BASED HEALTH PROMOTION AND CHRONIC DISEASE SELF-MANAGEMENT Amendments to Title IV of the Older Americans Act (OAA) have fostered a national initiative to introduce evidenced-based health promotion and intervention programs to the aging network. AoA funding to date has included an investment in evidence-based interventions with caregivers for persons with Alzheimer’s disease (AD) and a sweeping Chronic Disease Self-Management Program (CDSMP). Funding is awarded to state units on aging and distributed to selected Area Agencies on Aging (AAAs) who partner with local aging service programs and health departments. Between 2007 and 2009, 47 states have received funding for innovative and evidence-based programs for Alzheimer’s caregiving. The purpose of the CDSMP programs is to educate and empower older people to manage their own health care and their chronic illnesses. In addition to Title IV funding, these programs have received American Recovery and Reinvestment Act (ARRA) monies to expand the program across the country. In March, 2010, Secretary Sebelius (DHHS) awarded $27 million in grants to 45 states, Puerto Rico, and the District of Columbia to provide CDSMPs to older adults. Funding is also targeted to make system changes necessary to better integrate evidence-based health promotion programs for elders in both the aging network and the public health network. In addition to funding the programs, DHHS will coordinate with CMS to conduct a pilot test of one state to assess the AARA effect on health behaviors, health utilization, and health costs. Since 2006, AoA/DHHS has been infusing the concept of evidencebased programs into the aging network. Most are using the Stanford University CDSMPs in their work. Programs can be directed at general chronic disease management and/or diabetes, physical exercise, or nutrition. In addition to the demonstration programs being undertaken by DHHS, Medicare now covers some prevention activities for their beneficiaries. Medicare now covers some or all of the costs of screenings for osteoporosis, diabetes, and heart disease, as well as mammograms, colorectal, and prostate cancer screenings. Educating and training in diabetes self-management, smoking cessation, and nutrition are also covered by Medicare.

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THE STATE HEALTH INSURANCE ASSISTANCE PROGRAM To help older consumers and family caregivers to understand the healthcare system and related benefit programs, the State Health Insurance Assistance Program (SHIP) offers individual counseling for people on Medicare. The counseling is free and supported by federal grants. SHIP programs are available nationwide and are housed within the aging network.

MENTAL HEALTH Mental health of older Americans is an important topic and one that has been given much less attention than physical health. The American Psychological Association (APA) has been advocating for “integrated health care,” in which older Americans receive professional health services by an interdisciplinary team of providers who work together to diagnose mental problems, develop an integrated care plan, and manage the care of an individual. They point out that integrated care can reduce depressive symptoms and can reduce health-care expenditures by avoiding unnecessary procedures or treatments. The APA policy recommendations issued in 2008 include a focus on making mental health services an “integral” part of primary care services and steps that needed to be taken to address the geriatric mental health workforce crisis through training and development investments (APA, 2008). Specifically, the APA recommends the following:

B

B

Enact legislation designed to make mental health services for older adults an integral part of primary care services in community settings and to extend them to other settings where older adults reside and receive services (e.g., Positive Aging Act). Support initiatives to address the geriatric mental health workforce crisis, including: † Reinstate the geropsychology training grants in the Graduate Psychology Education (GPE) Program. † Enact legislation to strengthen recruitment and retention of professionals in the geriatric health workforce by establishing an interdisciplinary geriatric and gerontology loan repayment program for

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those who agree to provide clinical services to older adults (e.g., Caring for an Aging America Act). † Expand interdisciplinary training opportunities for psychologists and other health care professionals to work with older adults under Title VII of the Public Health Service Act. B

B

Support education and training opportunities for health care professionals and students in integrated health care settings across disciplines and at all levels of professional development. Support funding of scientific research related to † The impact and effectiveness of integrated health care and the contributions of psychologists as members of these teams. † Factors of diversity (e.g., age, race/ethnicity, gender, sexual orientation, disability, socioeconomic status, family structure, culture, and immigration status) affecting access to and use of integrated health care services (APA, 2008).

According to the National Institute of Mental Health (NIMH) (2009), older Americans are more likely to die as a result of suicide than any other age group. The numbers are staggering—of every 100,000 people aged 65 or older, 14.2 died by suicide in 2006 compared with the national average of 10.9 suicides per 100,000. White men 85 or older had the highest suicide rates with 48 deaths per 100,000. According to the Substance Abuse and Mental Health Services Administration (SAMSHA) B B B B

B B

Older adults (age 65 + ) represent 13% of the U.S. population, yet account for nearly one-fifth of U.S. suicides. Older adults are less likely to report suicidal ideation compared to younger adults. Suicide attempts among older adults are more likely to be deliberate and lethal. The most frequent methods of suicide among older adults include the use of firearms (men: 77%; women: 34%) and poison (men: 12%; women: 29%). Men account for 82% of suicides among older adults and have a higher suicide rate than women (38 vs. 5.7 per 100,000 persons). More than half (58%) of older adults (age 55+) contact their primary care provider 1 month before completing suicide.

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Researchers and practitioners are doing their share of the work to reach policy makers. There is a movement to raise awareness around issues related to mental health and aging. For those that have heard the cries from the field their collaborative efforts are encouraging. These include federal, state, and local agencies working to prove that success comes in many forms and creativity is the key. For example, the Substance Abuse and Mental Health Services Administration (SAMSHA), Older Americans Technical Assistance Center (TAC) was created in 2005 to provide support to agencies and organizations interested in working together to address the mental health needs of older adults in this country. An example of their work can be seen through the National Suicide Prevention Strategy which put forth the following recommendations to meet the needs of older adults who may be facing mental health issues: B B B

B B B B B

B

Promote awareness that suicide in older adults is a public health problem that is preventable. Develop broad-based support for elder suicide prevention. Develop and implement strategies to reduce the stigma associated with aging and with being a senior consumer of mental health, substance abuse, and suicide prevention services. Develop and implement community-based suicide prevention programs for older adults. Promote efforts to reduce access to lethal means and methods of selfharm by older adults. Implement training for recognition and assessment of at-risk behavior and delivery of effective treatment to older adults. Develop and promote effective clinical and professional practices. Improve access to and community linkages with mental health, substance abuse, and social services designed for the evaluation and treatment of older adults in primary and long-term care settings. Improve reporting and portrayals of suicidal behavior, mental illness, and substance abuse among older adults (SAMSHA, 2010).

It is clear that while older adults have been underrepresented in the mental health-care system researchers are working to shed light on the issues. Choi and Kimbell (2009) conducted focus groups of service providers to low-income elders to explore their experiences with these elders and depression care. The aging network professionals who participated in the study identified social isolation, loneliness, and loss as correlates of

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depression in those they were serving. The barriers to seeking help identified by these providers included a lack of understanding on the part of the elders about depression, stigma, and concerns about finances. The intractable problems associated with providing older adults with mental health services will require system changes as proposed by the APA and help from the aging network. The History of Community Mental Health Programs Community mental health programs took root in 1963 with the passage of the Community Mental Health Centers Act. The intention of the Act’s supporters was to enlarge mental health expenditures at all levels and develop a network of community-based treatment facilities, which would be located in geographic areas that had a maximum population of 175,000. Each state, however, had to determine appropriate catchment area boundaries. In each catchment area, an organization was to be designated as responsible for providing community mental health services. As originally specified in 1963, the services included five major components. In 1975, this list was enlarged to a total of 12 different services 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.

Inpatient care Outpatient care Partial hospitalization (day care) Emergency services Consultation and education Specialized services for children Specialized services for the elderly Screening of individuals considered for referral to a state mental hospital Follow-up services for discharged inpatients Transitional halfway houses for former mental patients Programs for prevention and treatment of alcoholism, if not already in existence in the catchment area Programs for the prevention and treatment of drug addiction, if not already available in the catchment area.

Beginning in 1981, federal funds were awarded to states under a block grant program. The Mental Health Services Block Grant specified five required services: outpatient services, 24-hour-a-day emergency

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services, day treatment, screening of patients for state mental health facilities, and consultation and education. Primary prevention, as embodied in the consultation and education programs, was one of the major assumptions of community mental health services. Treatments for individual mental health problems were supposed to be supplemented by primary prevention programs that located the sources of stress in the environment and worked with community groups to alleviate these negative influences. Primary prevention efforts focused on at-risk populations would include the elderly in many communities. The OAA did not specifically recognize the importance of mental health services for older persons until 1987. In the amendments passed that year, the term “mental health” was added at many points where formerly only the term “health” had been used. Any mental health services provided with AAA funds were to be coordinated with community mental health center programs and those of other public and nonprofit agencies. The Current Landscape: Mental Health and Evidence-Based Disease and Disability Programming In 2003, the AoA began looking at evidence-based programming for older adults as a way to address the physical and mental health care needs of older adults. In 2006, AoA implemented a state-based Evidence-Based Disease and Disability Program for older adults. A wonderful example of public – private partnerships the AoA initiative included collaborations with the Centers for Disease Control and Prevention (CDC), the Agency for Healthcare Research and Quality (AHRQ), the Centers for Medicare and Medicaid Services (CMS), and a variety of private foundations. Todate, 27 states have been awarded grants to provide evidence-based programs to older adults (AoA, 2010a). Evidence-Based Model Programs Healthy IDEAS—Nationwide Approximately 10 states have programs replicating Healthy IDEAS (Identifying Depression, Empowering Activities for Seniors). The Healthy IDEAS “is an evidence-based community depression program designed

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to detect and reduce the severity of depressive symptoms in older adults with chronic health conditions and functional limitations through existing community-based case management services” (NCOA.org). The Healthy IDEAS program is meant to be incorporated into an organizations’ existing care/case management program staffed by individuals who have experience in case management. Specific program details include: B B B B B B

Screening clients for depressive symptoms; Assessing the severity of their symptoms using a standardized depression scale; Educating clients about depression treatment and self-care; Linking clients to healthcare and mental health professionals; Helping clients engage in behavioral activation; and Coaching and supporting clients as they pursue personal, meaningful goals (NCOA, 2008).

The Pearls Program—Seattle, Washington www.pearlsprogram.org Developed by researchers at the University of Washington, led by Dr. Ed Wagner in the late 1990 the Pearls Program is an evidence-based treatment for depression in the elderly. The program is geared toward older adults (60 + ) who have symptoms related to minor depression and dysthymic disorder. Specific program details include the following: B B B B B B

A focus on teaching each client the skills necessary to move to action and make lasting life changes. Delivered in the client’s home. Designed to be delivered in the community, primarily through existing service-provision programs. A team-based approach, involving Pearls counselors, supervising psychiatrics, and medical providers. Improving quality of life as well as reduce depressive symptoms; and Is well-suited for individuals with chronic illness. (www. pearlsprogram.org).

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Evidence-Based Cooperative Agreements to Better Serve People with AD and Related Disorders Research has shown that addressing the mental health needs of primary caregivers who care for person’s with AD not only improves well-being for those caregivers but delay nursing home placement for their care recipients (Mittleman et al., 2004, 2007). In an example of responsive policy making, the AoA, in 2007, began awarding grants to states to develop interventions for persons with AD and their caregivers. The Alzheimer’s Disease Supportive Services Program (ADSSP) was created by Section 398 of the Public Health Services Act. According to the AoA, the Alzheimer’s Disease Supportive Services Program is focused on the following three areas: B

B

B

Delivers supportive services and facilitates informal support for persons with ADRD and their family caregivers using proven models and innovative practice. Translates evidence-based models that have proven beneficial for persons with ADRD and their family caregivers into community-level practice. Advances state initiatives toward coordinated systems of home and community-based care—linking public, private, and nonprofit entities that develop and deliver supportive services for individuals with ADRD and their family caregivers (AoA, 2010b).

Evidence-Based Model Program The New York University Counseling and Support Intervention for Caregivers—New York, New York The New York University Counseling and Support Intervention for Caregivers (NYUCI) began working with spousal caregivers of persons with AD in 1987. Since then, they have recruited hundreds of participants and have been a model for programs in other states. Specific program details include the following: B B

Individual and family counseling sessions that took place within the first four months of enrollment; Weekly support groups; and

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B

“Ad hoc counseling” that allowed an ongoing availability of counselors over the telephone and could be used by participants and other family members at their determination (AoA, 2007).

Funding Mental health programs are often viewed as expensive. Unlike sufferers of many acute illnesses, individuals with mental health problems may embark on a long period of treatment, including therapists and expensive medication. As a result, many private insurance plans limit their mental health coverage. Even Part B of the Medicare program only reimburses mental health services at a 50% rate, compared with the 80% reimbursement for other health services. As already indicated, the movement of patients out of psychiatric hospitals was expected to result in cost savings, but this has not been evident in many states. In addition, the stigmatization of mental health problems often makes it easier to cut funds for these programs than for other health endeavors. Mental health funding has failed to keep up with the need to provide services. The federal Mental Health Block Grant provided $437 million to states in FY 2003 (Directors Report, 2003) and $436 million in 2005 (Lehmann, 2005). Most of this money continued to flow to community-based mental health services. Between 1990 and 1997, funds for state mental hospitals were substantially reduced, whereas funds for community mental health programs increased by a proportion that was 26% above that of inflation. Unfortunately, state funding for mental health programs declined during this period from 2.1% to 1.8% of total state government expenditures—a 15% reduction (Lutterman & Hogan, 2000). This reduction has a major impact as in 2001, two-third of the funds for community mental health programs were being provided by state funds (AoA, 2001). As a result of funding problems, cutbacks in programming have been made at many mental health centers. In 2002, the National Mental Health Association, an advocacy organization, argued that federal funding was becoming increasingly inadequate. In fact, while expenditures for health care continue to increase dramatically, the proportion of health-care expenditures accounted for by mental health programs decreased between 1987 and 1997 (National Association of Mental Health Centers, 2004). Mental health programs suffered further from the economic downturn that began in 2000. As tax revenues declined dramatically, states looked for ways to balance their budgets. Many states cut funding to

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mental health services. In Florida, one hospital district terminated its payments for psychotropic drugs for poor mental patients. Missouri closed down a psychiatric rehabilitation center. Other states such as Michigan began to close long-standing mental health facilities (Sherer, 2004). State cuts in Medicaid funding also had a negative impact on mental health programs as Medicaid funds are a large source of support for state mental health programs. While there is evidence that more attention is being paid to issues related to mental health and aging, our road is long and full of potholes. One way to make the journey one that is inclusive, collaborative, and headed in the right direction is to consider our policy-making and program development from a new perspective. Diener and colleagues (2009) suggest that well-being becomes an integral part of our public policies. An example cited in the recent publication, Well-being and Public Policy (2009) includes the World Health Organization’s (WHO) revised slogan which was changed after consideration of issues related to subjective well-being. According to Diener (2009) “the WHO’s slogan has changed from, ‘add years to life,’ to ‘add life to years.’ The policy mandate is now to enhance people’s physical and mental health—including feelings of well-being—rather than simply to prevent mortal diseases (p. 134).” A closer examination of the definitions and boundaries of well-being as they relate to public policy and aging must be explored as well as the implications of the intersection of such a concept and public policy so as to include not just our status quo measures but those that address the human side of what we do.

ACTIVITIES AND QUESTIONS 1. As was mentioned in the beginning of the chapter, attempts to provide medical care for the elderly have met a variety of roadblocks. Imagine that you are working with a team to explore policy options that would eliminate the roadblocks. Outline your policy options and explain your rationale and the consequences for final policy recommendations. 2. Access the online Mental Health Services Locator database at http://mentalhealth.samhsa.gov/databases/. Research the mental health services for older adults in your area. a. What services are available? b. What are the eligibility requirements? (Mental Health Services Locator: http://mentalhealth.samhsa.gov/ databases/)

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3. Prepare a list of questions related to older adults and mental health and contact the program director in your area to discuss. 4. Consider the discussion about integrating mental and physical health. What are the barriers to this concept? What would be the benefit(s)? REFERENCES AARP Public Policy Institute. (2009). Medicare beneficiaries’ out-of-pocket spending for health care services. Retrieved June 29, 2010, from www.aarp.org Administration on Aging (AoA). (2001). Older Americans and mental health: Issues and opportunities. Retrieved August 2, 2004, from http://www.protectas-sets.com/ ssa/olderadultsandMH2001.pdf Administration on Aging. (2007). The New York University counseling and support intervention for caregivers: An evidence-Based intervention for caregivers of people with Alzheimer’s Disease. Retrieved May 5, 2010, from http://www.aoa.gov/ AoARoot/AoA_Programs/HCLTC/Alz_Grants/index.aspx Administration on Aging. (2010a). Evidence-based disease and disability program. Retrieved May 2, 2010, from http://www.aoa.gov/AoARoot/AoA_Programs/ HPW/Evidence_Based/index.aspx Administration on Aging. (2010b). Alzheimer’s Disease supportive services program. Retrieved May 2, 2010, from http://www.aoa.gov/AoARoot/AoA_Programs/ HCLTC/Alz_Grants/index.aspx American Psychological Association (APA). (2008). Integrated health care for an aging population: A fact sheet for policymakers. Retrieved June 15, 2010, from, http:// www.apa.org/pi/aging/ihap-factsheet-policymakers.pdf Bratter, B. (1986). Peer counseling for older adults. Generations, 10, 49–50. Bratter, B., & Freeman, E. (1990). The maturing of peer counseling. Generations, 14, 49– 52. Butterfield, F. (2000). Prisons: The nation’s new mental institutions. Outreach Magazine, Retrieved August 3, 2004, from http://www.psych4realth.com/ mental8.htm Carstensen, L. (2010). Growing old or living long: Take your pick. In S. Greenbaum (Ed.), Longevity rules: How to age well into the future, 2010. Carmichael, CA: Eskaton. Cash and Counseling. (2010). Retrieved October 14, 2010, from http://www. cashandcounseling.org/about/index_html Choi, N., & Kimbell, K. (2009). Depression care need among low-income older adults: Views from aging service providers and family caregivers. Clinical Gerontologist, 32, 60– 76. Desmond, K., Rice, T., Cubanski, J., & Neuman, P. (2007). The burden of outof-pocket health spending among older versus younger adults: Analysis from the Consumer Expenditure Survey, 1998–2003. The Henry Kaiser

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Family Foundation Medicare Issue Brief. Retrieved June 29, 2010, from www. kff.org Diener, E., Lucas, R., & Schimmack, U. (2009). Well-being for public policy. Oxford University Press: New York. Directors report. (2003, June). Retrieved August 3, 2004, from http://www.samhsa. gov.publications/allpubs/NMH-03-0154/default.asp Family Service Agency of San Francisco. (2004). The Senior Peer Counseling Program. Retrieved August 3, 2004, from http://www.fsasf.org/services/SPC.htm Federal Interagency Forum on Aging-Related Statistics. (2008). Older Americans 2008: Key indicators of well-being. Federal Interagency Forum on Aging Related Statistics. Washington, DC: U.S. Government Printing Office, March, 2008. Freedman, V., Martin, L., Schoeni, R., & Cornman, J. (2008). Declines in late-life disability: The role of early- and mid-life factors. Social Science Medicine, 66(7), 1588 –1602. Fries, J. (2005). The compression of morbidity. The Milbank Quarterly, 83(4), 801–823. Gerontological Society of America. (2010). Health care reform provisions affecting older adults. Retrieved June 15, 2010, from http://www.geron.org/HCRprovisions. pdf Gulf Coast Jewish Family Services, Inc. (2004). Mental health services. Retrieved August 4, 2004, from http://www.gcjfs.org/svc-mental.htm Jenson, J. (2007). Health care spending and the aging of the population. CRS Report for Congress. Congressional Research Service, The Library of Congress. Retrieved March 5, 2008, from http://www.policyarchive.org/handle/10207/ bitstreams/4464.pdf Kaiser Family Foundation. (2009). Medicare: The medicare prescription drug benefit fact sheet. Retrieved from http://www.kff.org KaiserEdu.org. (2010a). Prescription drug costs: Background brief. Retrieved June 27, 2010, from www.kaiseredu.org KaiserEdu.org. (2010b). U.S. health care costs: Background brief. Retrieved June 27, 2010, from www.kaiseredu.org Kaye, S., Harrington, C., & LaPlante, M. (2010). Long-term care: Who gets it, who provides it, who pays, and how much? Health Affairs, 29(1), 11 –21. Kornblatt, S., Cheng, S., & Chan, S. (2002). Best practices: The On Lok model of geriatric interdisciplinary care. Journal of Gerontological Social Work, 40, 15– 22. Lehmann, C. (2005). APA pleased with budget boost for public mental health services. Retrieved November 28, 2005, from http://pn.psychiatryonline.org/cgi/content/ fulI/40/1/22-1 Levine, C., Halper, D., Peist, A., & Gould, D. (2010). Bridging Troubled Waters: Family caregivers, transitions, and long-term care. Health Affairs, 29(1), 116–124. Levy, C. (2004). Home for mentally ill settles suit on coerced prostate surgery for $7.4 million. Retrieved January 27, 2010, from New York Times, August 5, 2004, p. A22.

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Lutterman, T., & Hogan, M. (2000). State mental health agency controlled expenditures and revenues for mental health services. In R. Manderscheid & M. Henderson (Eds.), Mental health, United States, 2000. Retrieved August 3, 2004, Retrieved September 29, 2010, from http://www.eric.ed.gov/PDFS/ ED469203.pdf Manton, G. K., Stallard, E., & Corder, L. (1997). Changes in the age dependence of mortality and disability: cohort and other determinants. Demography, V., 34(1). Medicare.gov—Paying for Long-Term Care. (2010). Retrieved October 14, 2010, from http://www.medicare.gov/LongTermCare/Static/Medicaid.asp?dest¼ NAV% 7CPaying%7CGovernmentPrograms%7CMedicaid Mittelman, M. S., Haley, W. E., Clay, O. J., & Roth, D. L. (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer’s disease. Neurology, 67, 1592–1599. Mittelman, M. S., Roth, D. L., Coon, D. W., & Haley, W. E. (2004). Sustained benefit of supportive intervention for depressive symptoms in caregivers of patients with Alzheimer’s disease. American Journal of Psychiatry, 161, 850–856. Moon, M. (1996). Medicare now and in the future. The Urban Institute Press: Washington, DC. National Association of Mental Health Centers. (2004). Community-based mental health services are under-funded. Retrieved August 2, 2004, from http://www. namha.org/federal/appropriations/factsheet3.cfm National Council on Aging. (2008). Healthy IDEAS: Addressing depression in older adults replication and technical assistance information. Retrieved May 9, 2010, from http://www.ncoa.org/assets/files/pdf/Healthy-Ideas-Files.pdf National Health Policy Forum. (2010). The basics: The Community Living Assistance Services and Supports (CLASS) Act: Major legislative provisions. Retrieved June 20, 2010, from http://www.nhpf.org National Institute of Mental Health. (2009). Suicide in the US: Statistics and prevention. Retrieved June 20, 2010, from http://www.nimh.gov PACE. (2000). Who we serve? Retrieved July 28, 2004, from http://www.natlpaceasson.org/content/research/who_served.asp Rabins, P., Black, B., German, R., Tlassek-Wolfson, M., & Penrod, J. (2000). The psychogeriatric assessment and treatment in City Housing (PATCH) for elderly with mental illness in public housing: Getting through the crack in the door. Archives of Psychiatric Nursing, 14, 163 –172. Raschko, R. (1985). Systems integration at the program level: Aging and mental health. Generations, 25, 460 –463. Roca, R., Storer, D., Robbins, B., Tlasek, M., & Rabins, P. (1990). Psychogeriatric assessment and treatment in urban public housing. Hospital and Community Psychiatry, 41, 916 –920.

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SAMHSA. (2010). Older Americans substance abuse and mental health technical assistance center. Suicide prevention for older adults. Professional Reference Series, Suicide Prevention, Volume 1. Schoen, C., Osborn, R., How, S., Doty, M., & Peugh, J. (2008). In chronic condition: Experiences of patients with complex health care needs, in eight countries, 2008. Health Affairs, Web Exclusive. Retrieved April 25, 2010, from http:// content.healthaffairs.org/webexclusives/index.dtl?year¼2008 Sherer, R. (2004). A prescription for disaster: Cutbacks on mental health programs curb access to care. Retrieved August 2, 2004, from http://www.psy-chiatrictimes. com/p040401a.html The Pearls Program. Retrieved from http://www.pearlsprogram.org/OurProgram.aspx U.S. Department of Health and Human Services. (2010). National Clearinghouse for Long-Term Care Information. Retrieved June 29, 2010, from http://www. longtermcare.gov www.npaonline.org National PACE Association: Who, what and where is PACE?

8

Housing Aging in Place, Institutional and Congregate Settings, and Alternate Living

INTRODUCTION Is your community a good place to grow old? As you ponder that question, consider the challenge put forth by Andrew Sharlach (2007) in his article, Creating Aging-Friendly Communities—America’s cities and towns must become better places to live. Housing is a crucial aspect of the social environment. The principles put forth by Sharlach provide a framework for moving toward creating aging-friendly communities: B B B B B B

Person – environment fit; Behavior settings; Individuals as constructive agents; Lifespan developmental processes; Physical, social, and cultural contexts; and Macrolevel processes.

In recent years, considerable attention has been paid to finding ways to allow and support older persons to remain in the familiar settings of their own homes, social settings, and communities as they age toward and into the frailty that accompanies aging for many. As we explore the past, present, and future of housing for older adults, we ask you to consider “the anatomy of home” and seven key components proposed by author Will North: 1. Place 2. Shape 3. Beauty 101

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Comfort Delight Dwelling Spirit

The type and quality of housing available to older persons have an impact on their quality of life and on their ability to live in the community. This chapter will provide information about the history of housing for older adults and will address the variety of settings in which older adults live, including aging in place in the community and residential or congregate settings, as well as programs and services that present opportunities for older adults to age in place. A few statistics help to clarify the housing situation of older persons: B B B B B B

In 2007 there were 2.9 million households in the United States headed by an older adult; Owners comprised 80% of the homes, 20% were renters; Older adults who live alone have the highest rates of poverty (U.S. Census); Five percent of older persons live in housing that needs repair; Eighty percent of persons over the age of 65 own their own homes (U.S. Census); and More than 30% of all elderly households allocate over 30% of their income for housing costs (Federal Interagency Forum on Aging-Related Statistics, 2008).

BACKGROUND In 1999, there were already 2.5 million households headed by persons over age 62 (AARP, 2001). By 2007, that number totaled 2.9 million. A 1992 survey by AARP of those over age 55 found that 84% of the respondents wanted to stay in their current home and that only 6% were living in any form of housing developed for older adults. According to a 2005 AARP study, the desire to remain in one’s own home continues to be strong and will only increase as the older population continues to age and a greater variety of housing options becomes available and better suited to meet the needs of an aging population. Many older individuals with limited incomes have taken advantage of the subsidized housing made available through the Department of

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Housing and Urban Development (HUD) or local state agencies. More affluent elderly have increasingly shown interest in retirement communities with specific age limits for residents or new continuing care (“life care”) communities. There is also increasing evidence that many older persons who have no children or grandchildren living with them are interested in living in central cities, where they have access to restaurants and cultural events: “I’ve been to around 40 cities in the last couple of years, and in every one of them there is either a small and growing or a very large movement back downtown. . . . There’s no question it’s a national phenomenon, it’s happening even in Rust Belt cities, and it’s fueled by two groups: young professionals and empty nesters” (McIlwain, 2004, p. 4). In recognition of this trend, builders are planning retirement communities on the outskirts of cities such as Chicago. This chapter discusses the major privately and publicly sponsored housing services available to the elderly. As the history and current program models indicate, there are two streams of funding, one that provides monies for the building of units for low-income families, and a second that subsidizes the costs of rentals for low-income families.

A HISTORY OF AGING IN PLACE The concept of federally supported housing began in the 1930s, with the National Housing Act of 1934 and the United States Housing Act of 1937. The 1934 Act inaugurated the first home mortgage program—a restructuring of the private home financing system—under the Federal Housing Administration (FHA). Under the 1937 Act, the government offered subsidized housing to low-income families. Although the primary purpose of this latter legislation was to clear slums and increase employment, new housing resulted. Under the Housing Act of 1949, the national goal of “a decent home and suitable living environment for every American family” was first stated. The act also included programs for urban renewal, increased funds for subsidized housing, and new programs for rural housing. During the 1950s, housing programs were more directed toward rehabilitation, relocation, and renewal. Section 202 began under the Housing Act of 1959. The program provided low-cost loans to developers of private housing and was the forerunner of later mortgage subsidy programs. In the Housing Act of 1961, below-market interest rate mortgages were initiated to assist rental housing for moderate-income families through section 221(d)(3). In 1965,

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two rent-subsidy programs were begun. In one program, residents would pay 25% of their income in privately owned housing units built with FHA financing. Under the Section 23 leasing program, the government would lease regular units for low-income families. In 1968, Congress found that “the supply of the nation’s housing was not increasing rapidly enough to meet the national goal of 1949” (U.S. Department of Housing and Urban Development, 197.3). Congress then established a production schedule of 26 million housing units—6 million of these to be for low- and moderate-income families over the next 10 years. One of the programs of this act was Section 236, which provided a subsidy formula for rental housing. In 1969, the Brooke Amendment was passed, which limited the amount of rent that could be charged by local housing authorities to 25% of adjusted tenant income. In September 1973, President Nixon halted all housing programs except for the low-rent public-leasing program, in order that a thorough review could be accomplished of what was then viewed as a spendthrift and inadequate program (U.S. Department of Housing and Urban Development, 1973). Following a study, during which no new federally subsidized housing starts were approved, the Housing and Community Development Act was signed into law in August 1974. The act removed the suspension that had been placed on construction and required contracts annually of at least $150 million to help finance development or acquisition costs of low-income housing projects. Because most of the money was to be channeled through the new Section 8 program, which was authorized under this Act, funding was slow to begin. Administratively, at least 2 years elapsed before the Section 8 program was fully operational (U.S. Senate, Special Committee on Aging, 1975).

PUBLIC HOUSING Although the term is often assumed to relate to all forms of subsidized housing, “public housing” was in fact the earliest means of providing adequate homes for low-income elderly. Public housing was established under the Housing Act of 1937. HUD appropriates funds for these complexes. More than 1 million households live in rental units administered by local housing authorities. The authorities maintain the buildings and ensure that low-cost rentals are available to poor families. Rentals are usually set at 30% of the family’s income. In addition, HUD provides funds for

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maintenance of the buildings, and other agencies may provide staff for special programs for older persons. It is often difficult for older persons to live in public housing units because many local housing authorities require that older residents who need supportive services arrange to have these needs met if they are to remain in the complex. A small percentage of housing authorities (10%) do not allow older persons who are not independent to live in the public housing complex. In 1999, 13% of public housing tenants were seniors (U.S. Department of Housing and Urban Development, 2000). Many of these tenants had aged in place. In recognition of the needs of this population, the National Affordable Housing Act of 1990 allows local housing authorities to charge HUD for the inception of “service coordinator” positions and for 15% of the cost of services to older tenants. These services may include meals, chore services, transportation, personal care, and health-related services. Approximately half of all public housing units are over 20 years old. In recent years, the federal emphasis in the field of housing has shifted to other programs, such as Sections 8 and 202.

THE SECTION 8 EXISTING HOUSING PROGRAM Authorized under the Housing and Community Development Act of 1974, this program filled the void left by the 1973 moratorium. It provides no direct funding to the developer, but instead pays monthly rent, so that housing can be developed on the private market. Section 8, or subsidized rent, is the rent for a unit in a development receiving federally subsidized Section 8 housing assistance payments. The Section 8 rent differs from the market rent in that it depends strictly on the amount of income of the tenant. Tenants pay 30% of their adjusted income for rent, with the Section 8 housing assistance payment to the landlord making up the difference between tenant-paid rent and the full market rent (U.S. Department of Housing and Urban Development, 2004b). Tenants are now allowed to pay more than 30% of their income for rent if the public housing authority agrees that the rent is reasonable for both the unit and the family (U.S. Senate, Special Committee on Aging, 1991). The tenant could pay as little as $40 or $50 per month or nearly as high as the market rents, depending on the monthly adjusted income. Rents under Section 8 cannot exceed the fair market rent for the area as established by HUD. Rents are reviewed annually, and the tenants must

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move if 30% of their adjusted income meets the fair market rent for that particular housing project. Fair market rents take into account construction costs and maintenance fees for individual locations. Tenants in housing built through Section 202 grants usually receive Section 8 subsidies. Fair market rates vary widely. In Oakland, California, the fair market monthly rent for a one-bedroom apartment is $1,132, in San Diego, $939, Atlanta, $815, and in Chicago, $797 (U.S. Department of Housing and Urban Development, 2004b). In order to qualify for Section 8 subsidies originally, the income of a family of four could not be above 80% of median income in their area of residence. Congressional action between 1981 and 1984 reduced eligibility to 50% of median income, thus making many families ineligible for Section 8 subsidies. Nationally, families with less than 30% of the local median income comprise 75% of the families receiving subsidized rent (U.S. Department of Housing and Urban Development, 2004b). Projects with Section 8 rental units are owned by private parties, forprofit and nonprofit organizations, and public housing agencies. Under Section 8, HUD has made 15- or 20-year contracts with private parties for the rental units, unless the project is owned by or financed with a loan or loan guarantee from a state or local housing agency. In this case, HUD will guarantee the rental units for 40 years. Efforts have been made to increase the private guarantee time of 20 years because in some situations it is a disincentive for private parties to become involved in the program. Any type of financing may be used for the purchase or rehabilitation of a project that houses Section 8 rental units, including HUD-FHA mortgage insurance programs, conventional financing, and tax-exempt bonds. The property owner handles the whole program and is responsible for leasing at least 30% of the subsidized units to eligible families. Under the Section 8 legislation, priority is given to projects with only 20% of their units in Section 8, to guarantee an income mix in the housing project. However, if the rental units are to be used for the elderly, there is no restriction on the number of Section 8 rental units per project. Older persons occupy approximately half of all Section 8 housing.

Purpose of the Section 8 Program The purpose of the Section 8 program is to develop rental housing for very low-income families within the structure of the private housing market. Section 8 units can exist in houses, small apartment buildings,

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or any other location that has units to rent. Suburban, rural, and urban areas are equally eligible. However, HUD determines how many Section 8 rental units can be awarded to a given area in each state. Usually, applications far exceed the units available for the specific areas in question. The Section 8 housing program had a slow beginning after it was authorized in 1974. In 1975, there were 200,000 applications, but only 30 new units actually materialized (U.S. House of Representatives, 1976). The cumbersome application and administrative procedures were blamed for the delay. Section 8 was an entirely new program involving low-income families. The private financial community—the group that had to generate the construction monies—did not appear ready to fund the building of units that would house Section 8 families until the program had grown to become one of the key housing programs for the elderly. Section 8 covers only the actual rental units but is most successful when combined with other housing construction and service programs.

Cost Concerns: Section 8 Concerns about cost appeared to create questions about the development of any large number of Section 8 units in the 1980s. By 1989, 46% of Section 8 housing was occupied by older persons. Section 8 rent subsidies are now available only for existing housing. Subsidies for new housing were eliminated in the Housing Act of 1983 (U.S. Senate, 1990). The federal government planned to renew many of these for short terms. Funding for Section 8 housing had also declined from $293 million in FY 1996 to $128 million in FY 1997 but had returned to $249 million in FY 2004 (National Alliance on Mental Illness, 2004). As a possible alternative to the Section 8 Existing Housing Program, the Reagan administration instituted housing vouchers, which allow individuals to find their own housing in the private sector. In the voucher program, tenants also contribute 30% of their income to the rent. A payment standard based on fair market rents is determined for the local area. If the rent of the tenant’s unit is less than the payment standard, the tenant’s contribution is reduced by the difference. If the rent exceeds this payment standard, the tenant must make up the difference. There are no limits in the rent the tenant can pay under the housing voucher program (Leger & Kennedy, 1990). Housing vouchers have been authorized for only 5 years.

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Evaluating the Success of Section 8 An evaluation of the experiences of a large number of enrollees indicates that the housing voucher program has been successful (Leger & Kennedy, 1990). Questions have been raised from the onset of the program as to whether enrollees will be able to find housing they can afford and landlords who will accept the vouchers. In areas with tight housing markets, these two factors could pose a major hurdle. The average success rate in 1990 for finding housing was 65%. There were, however, three areas with lower success rates, and one area where the success rate was only 33%. The reasons for these differences could not be clarified. Overall, housing voucher recipients were slightly more successful in obtaining qualified housing than were recipients in the existing housing certificate programs. Over one-third of the recipients were able to stay in their existing apartments while obtaining vouchers. Housing voucher recipients who moved paid rents that were 6.7% higher than recipients in the certificate program. This difference may, in part, reflect “higher prices for higher quality units” (Leger & Kennedy, 1990, p. xii). Older persons had better success rates than younger age cohorts, and single-person older households had the highest success rate of any group. The success rate of older persons in the voucher program was somewhat higher than in the certificate program. There was a significant reduction in the rent burden of the elderly in the voucher program. The elderly were the only population group for which a significant difference was found.

The Section 202 Program Authorized under the Housing Act of 1959, Section 202 provides a capital advance at no interest to nonprofit organizations. The advances do not have to be repaid if the housing units remain available to low-income elderly for at least 40 years ($5.2 billion, 2003). The rents paid by tenants in Section 202 housing do not usually cover the costs of operating the property. To cover these costs, the program also provides rental assistance to the nonprofit organizations. Rental housing can be provided for the elderly through new construction or rehabilitation of existing structures. The property should include needed support services and can have such rooms as dining halls, community rooms, infirmaries, and other essential services.

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These supportive services are largely funded by non-HUD organizations. Many of the nonprofit homes for the aged, such as Cathedral Residences in Jacksonville, Florida—a large housing complex that serves over 700 elderly—were partially constructed with money under Section 202. Reaffirming the Importance of Section 202 The Section 202 program was very successful throughout the 1960s but was phased out after that time and replaced by Section 236, another federal loan program. However, Section 236 was frozen in 1973, when all federal housing programs were halted to allow for review. Section 202 was reinstated as part of the Housing and Community Development Act of 1974, but it did not return to full activity until the summer of 1975. Under the 1974 act, a $215 million borrowing level was approved for FY 1975, but it was not used until the following year. Regulations in 1976 reaffirmed the importance of the program in providing both construction and long-term financing for housing projects (U.S. Senate, 1991). By 2003, 350,000 units had been funded through the 202 program. Typically, 6,000 units of new housing are funded through the program each year ($5.2 billion, 2003). In FY 2002, $783 million was available for Section 202 programs. (U.S. General Accounting Office, 2003). In 2004, older persons constituted 85% of the households utilizing the Section 202 program (Government Accountability Office, 2005). Despite this impressive figure, only 8% of very low-income elderly renters were being helped by Section 202 housing ($5.2 billion, 2003). Private nonprofit corporations and consumer cooperatives are eligible for Section 202 financing. Housing developments under Section 202 cannot exceed 300 units. Section 8 participation is required, and approval of Section 202 loans is based on the feasibility of getting Section 8 financing. In other words, Section 202 construction financing cannot be granted if the number of Sections writs for a section of the state has already been obligated. Section 202/8 allocations are made in accordance with Section 213, a fair share needs formula. The formula, which determines the number of eligible units for a given geographic area, is based on the following criteria: 1. The number of households with the head or spouse aged 62 or older; 2. The number of such households that lack one or more plumbing facilities;

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3. The number of such households with incomes less than the regionally adjusted poverty level; and 4. The prototype production costs for public housing units as adjusted by average cost factors within the loan region. Target Population The target population for Section 202 programs is an elderly household— one headed by an individual over the age of 62—with income less than 50% of the median income in an area. In 2003, approximately 3.3 rental households in the United States qualified under these income criteria ($5.2 billion, 2003). The 1974 Housing Act also specified that 20% – 25% of funds for Section 202 housing must be awarded in rural areas. The residents of the housing must also reflect the racial population of the community. This provision was meant to ensure that minority elderly obtained housing. The projects are required to have either an adequate range of necessary social services or to facilitate the access of residents to such services. The application process for Section 202/8 housing is extensive and consists of five stages. It usually takes 3 – 5 years from the time of idea to actual implementation, and approval is given only to those developers with a proven track record. Although Section 202 projects continue to be built, the size of these projects has dropped substantially. Some of this reduction in size is related to the growth of 202 projects outside of central cities: 22% of the projects occupied after 1984 were built in areas with fewer than 10,000 residents, a figure that is in stark contrast to the 2.2% of the projects occupied before 1975. As in previous years, religious groups sponsor the largest proportion of projects (50%). The 202 program provides 86,000 units for needy older persons around the country ($5.2 billion, 2003).

OTHER FEDERAL HOUSING INITIATIVES Section 231 Section 231 insures lenders against losses on mortgages for construction or rehabilitation of unsubsidized housing for the elderly. This program is available to both for-profit and nonprofit developers. By FY 1989, 67,000 units of housing for older persons were insured under this

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program. Although not specifically targeted for the elderly, Sections 221(d)(3) and (4) play a larger role at present in insuring multifamily housing for the elderly. In 2002, 38,000 units with a value of $3 billion were insured through Section 221(d)(4) (Weichert, n.d.). These two sections permit the inclusion of congregate programs in the developments they insure. One of the innovations of 221(d)(4) was Retirement Service Centers, which provide rentals at the market rate for older persons and also include congregate meals, housekeeping, and laundry services. Although the program had completed 128 projects, providing almost 19,000 units by 1990, it was suspended by HUD. The decision to suspend this program was based on a default rate in excess of 35%. Section 223(f ) Section 223(f ) provides mortgage insurance for existing multifamily housing units for the elderly where the repair needs are not extensive; this program is available in connection with refinancing or purchase of a project (U.S. Senate, Special Committee on Aging, 1990). Section 236 authorized interest reduction payments on behalf of owners of rental housing projects designed for occupancy by lower-income families for the purpose of reducing rentals for such tenants. In recent years, units built through 221(d)(3) and 236 financing have become unavailable to lowincome tenants as landlords have prepaid their mortgages and raised the rents. The 1990 National Affordable Housing Act The 1990 National Affordable Housing Act allowed landlords to sell the property. If a nonprofit group interested in purchasing the property cannot be found, the property can be sold. Older or disabled tenants, however, must be given 3 years to find another apartment. The displaced tenants will be given vouchers to subsidize their housing, and the former landlord will pay 50% of the moving costs (Retsinas & Retsinas, 1992). The 1990 Housing Act also contained two important new initiatives. The HOME Investment Partnership provides block grants to localities with the expectation that most of these funds will be used for rental assistance, assistance to home buyers, or construction or rehabilitation of homes. The Home Ownership and Opportunity for People Everywhere

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(HOPE) program reflects national support for an idea that originated with a public housing complex in Washington, DC. HOPE provides funds that allow public housing tenants who would not receive mortgages from banks to purchase their units. HOPE is oriented to first-time homeowners. In the Seattle – Tacoma area in 1996, 10 homes were purchased by the local housing authority and rehabilitated. Families with an average income of $25,000 were selected for low-cost mortgages and allowed to purchase these newly renovated dwellings. The local community that receives HOME funds must match the federal grant. In 2001, 125,000 rental units had been completed with HOME funds and 16% of these units were occupied by individuals over the age of 62 (AARP, 2001).

HOUSING SERVICES The various HUD programs and state housing agencies support housing that ranges from public ownership and complete public financing to private financing, building, and renting, with federal insurance on the mortgage only. The upper-income limits allowed vary by program, with the most stringent limits placed on the direct public housing and the least stringent limits on the mortgage insurance – only program. As indicated earlier, nonprofit developers are free to design as much additional space as they wish and are encouraged to add supportive services to the housing units financed under Section 202. However, because of the income limitations placed on those living in federally financed housing, the developer has to keep the rents within the fair market rates and within the rates that the limited-income residents can pay. This, in turn, places limits on the amount of additional support services that can be provided. For example, one high-rise for the elderly in Baltimore, financed under Section 202/8, has the entire top floor overlooking the city as a carpeted and draped multipurpose room. The cost of building as well as maintaining this large, well-equipped, and well-used room must be absorbed in the rental fees allowed for each individual apartment. With the rental ceilings determined by the government, the room can be only marginally maintained. Amenities built into the housing programs depend on available finances and on the cost of these amenities. The support from the community in maintaining additional housing facilities and regional preferences will also be determinants of a final design package. The potential resources

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that can be included in elderly housing are extensive, spanning from transportation, nutrition, and health-screening programs to craft rooms, groceries, and even small restaurants. Inclusive of the Larger Service-Delivery System Elderly housing projects can thus be part of the larger service-delivery system of the community. Because federal housing funds are limited, services run under outside auspices may need to be incorporated into the housing units. Two excellent examples of housing complexes with integrated services are Worly Terrace, Columbus, and Glendale Terrace, Toledo, Ohio. Geared to the elderly who are returning from mental hospitals and to low-income community residents—many of whom were losing their homes through urban renewal—these housing developments operate a unique series of integrated financing and service systems. While HUD paid for the basic construction of the units, the state of Ohio paid for the rooms not eligible under federal regulations (in this case, dining room, community building, clinic, and craft room); the local housing authorities manage the completed housing units. Worly Terrace: Case Study Worly Terrace is located near public transportation, shops, and several churches. The complex has a six-story high-rise building with 106 living units, four one-story buildings with 120 units, and a centrally located community building. There are furnished and unfurnished quarters for as many as 270 residents, with apartments for single persons, couples, or two unrelated single persons to share. Available services include hot meals, beauty and barber services, preventive health services such as health screening, the services of a full-time registered nurse and licensed practical nurse, a part-time physician and podiatrist, social activities, and recreation (U.S. House of Representatives, 1976). The services available in publicly financed or insured housing depend on the developer, the sponsor, the interest of the residents, and the community resources available. Early planning and community support for the project enhance the chances for adequate support services. Many states are using Medicaid waivers that allow them to utilize Medicaid funds for services in elderly housing sites. Case managers and home care workers may set up offices in individual buildings where a large proportion of the residents are older (Mollica, 2003).

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HOME REPAIR AND RENOVATION Many older homeowners find it necessary to seek alternative housing because of their inability to carry out the maintenance necessary to keep their homes in good condition. They also may lack the funds to hire contractors to perform necessary repairs. As homeowners quickly learn, minor repairs that are delayed for a substantial period of time can easily become major costly ones. Home repair programs aimed primarily at low-income elderly homeowners have now been organized around the country. Many of these programs have dual purposes: (1) bringing substandard homes up to local code levels and (2) providing supplemental income by hiring older persons to work on these projects. Evansville, IN: A Case Study In Evansville, Indiana, a major repair program for elderly residents was carried out in a number of neighborhoods. As in other geographic areas, the repair efforts were concentrated on functional aspects of the home, including wiring, vermin control, replacement of broken window panes, and new plastering. The hope of the project coordinators was that instituting the repair program would produce a ripple effect, which would not only encourage the elderly to continue making their own repairs but also encourage other neighborhood residents to undertake long-needed repairs. One of the reasons this ripple did not occur was because a majority of the elderly did not even tell their neighbors about the program. This silence was attributable to their ambivalent feelings about accepting aid. In order for the program to be more visible within the community, the evaluators argued that the repairs would have to be undertaken on a continuous basis, rather than bringing repairmen into the individual home for an intensive, but brief, period of time (Abshier, Davis, Jans, & Petranek, 1977). Addressing the Funding Issue Home repairs that are to be anything more than cosmetic are also costly, although volunteer labor can reduce costs significantly. In one community, a neighborhood corporation provides regular home repair and renovation services for more than 2,000 enrollees (McCleary, 1986). In FY 2004, more

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than 1.5 million older persons received services through the Community Development Block Grant (CDBG) (U.S. Department of Housing and Urban Development, 2004a). Home repairs and rehabilitation were among the major uses of these CDBG funds by older recipients. Funding for home repairs can also be developed from a variety of possible sources including Title III of the Older Americans Act, the Social Services block grant, or local appropriations. In rural areas, low-interest home repair loans are available through the Farmers Home Administration Section 504 Program. Under the Department of Energy Weatherization Assistance Program, low-income elderly can also apply for funding to help them purchase energy-saving aids, such as storm windows or insulation.

INSTITUTIONAL SETTINGS History of Long-Term Care Settings The uniqueness of long-term care facilities lies in their constraint on individual choice in everyday situations, as the person living in these settings must adjust to being removed from “normal” individual or family living patterns. Existing long-term care residences include long-term care hospitals, private and public nursing homes, homes for the aged, psychiatric hospitals, and Veterans Administration facilities. All of these facilities provide varied levels of services ranging from extended, skilled, and intermediate care to personal and boarding care. Long-term care facilities are run under a variety of auspices including public, private-nonprofit, and proprietary organizations. The history of long-term care institutions in America began with the almshouses and the public poor houses of colonial America. When a family or individual could no longer care for the pauper, that person became the responsibility of the government. The disabled, aged, widowed, orphaned, “feeble-minded,” and deranged, and victims of disasters were mixed together in almshouses, hospitals, workhouses, orphanages, and prisons. Officials made little distinction between poverty generated by physical disability and economic distress. Boarding out, or foster care programs, were not uncommon, although often harshly administered (Cohen, 1974). Following the Revolutionary War, almshouses became increasingly popular, and in 1834, the Poor Law of England reaffirmed this approach. The philosophy of isolating the aged and infirm from society continued to be the predominant social policy throughout the 19th century.

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Residents of almshouses were usually pressed into working for very low wages as a means of earning at least a meager salary. Any financing for the facilities was the responsibility of the towns and counties in which the facilities were located; all efforts at obtaining state or federal support were denied for three-quarters of a century. By the late 19th century, other resources were being located for some indigent populations, but the elderly were still relegated to the almshouses. In 1875, a New York State report noted: Care has been taken not to diminish the terrors of this last resort of poverty, the almshouse, because it has been deemed better that a few should test the minimum rate of which existence can be preserved than that many should find the almshouse so comfortable a home that they would brave the shame of pauperism to gain admission to it. (Cohen, 1974, p. 14)

In the beginning of the 20th century, the rise of private foundations and philanthropy began to expand the types of institutional care available. In addition, by 1929, the Old Age Assistance Act began to offer an alternative to institutionalization in most states. In the 1930s, new welfare, loan, housing, public works, and rent programs, as well as the Social Security Administration (SSA), provided a new concept of income support for the aged. In the early versions of the SSA, there were prohibitions against federal financial participation in the cost of any relief given in any kind of institutional setting. Later, this prohibition continued in relation to public facilities because public institutions were considered a state responsibility (Cohen, 1974). The intent of the legislation was to encourage the elderly to live at home or with foster families. However, the actual effect was the displacement of people from public facilities—particularly to boarding homes. As these facilities began to add nurses to their staffs, the name “nursing home” emerged (Moss & Halmandaris, 1977). Individuals who could not afford to move to the boarding homes continued in the public homes at state expense (Drake, 1958). The Rise of the Institutional Setting Since the 1930s, the number of institutions providing long-term care has increased rapidly. In 1999, there were 18,000 nursing homes (excluding hospital-based facilities). Federal participation in the cost of assistance for indigent persons in private institutions was first authorized in 1953, but the ban on payment to public institutions continued. However, if states

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wanted to participate in the federal program, they were required to establish some standards for the institutions. Also, in the 1950s, several federal acts authorized monies through grants and loans for constructing and equipping long-term care institutions. The Hill – Burton Act, the Small Business Administration, and the National Housing Act provisions were the most prominent. The passage of Medicare in 1965 and Medicaid in 1967 opened new and major funding sources for long-term care institutions. With this legislation, service delivery requirements were reshaped and clarified. Prior to the enactment of Medicare and Medicaid, there was very little consistency among what were defined as institutions of long-term care. Nursing homes, homes for the aged, convalescent hospitals, and other long-term care facilities were all defined separately by each state. The new funding sources set common definitions and basic national standards for service delivery in this important area of long-term care (Winston & Wilson, 1977). Dunlop (1979), however, has argued that the growth in the number of nursing-home beds was greater before passage of Medicaid than after. Indeed, Medicaid replaced earlier forms of medical assistance and has enabled the continuation of nursing-home growth while developing a mechanism for enforcing nursing-home standards.

EXTENT OF LONG-TERM CARE PROGRAMS Despite the extensive increase in the number of long-term care patients, only 4.5% of people aged 65 and older were residents of nursing homes in 2009. Importantly, this percentage is related to age. Although only 1.1% of individuals between the ages of 65 and 74 were living in nursing homes, this figure rises to 18.2% among individuals over the age of 85 (AoA, 2009). As people get older, their chances of being in a nursing home increase. It is estimated that 43% of all individuals over the age of 65 will spend some time in a nursing home during their lifetime, but for 24%, their stay will be less than one year (The Rubins, 2004). In 1999, among all individuals over the age of 65, the average length of stay in nursing homes was 388 days (ElderWeb, n.d., 2000). Not only has the number of beds increased, but the size of the homes has as well, reflecting the change from family businesses to larger corporations. In 1963, the average nursing home had 39.9 beds; this had increased to 105 beds by 1999 (National Center for Health Statistics, 2002). Nursing homes are primarily for-profit entities (67%), but 27% of the 18,000

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homes in the United States in 1999 were under the auspices of nonprofit organizations (National Center for Health Statistics). Large chains such as Beverly Enterprises own more than half of the for-profit nursing homes. In 1997, it was estimated that 3.6 million people would need nursing homes by the year 2018 (National Academy on Aging, 1997). This figure, however, may no longer be accurate because of the growth of other forms of long-term facilities available to older persons and their families. One indicator of the growth of a variety of alternatives to nursing homes was the drop of 1% a year between 1990 and 2000 in the number of nursing home residents in Michigan (Edgar, 2000). Nationally, there was an 11.5% vacancy rate in nursing homes in 2005 (Baker, 2005). An Issue of Age There is an inverse relationship between age and nursing home residency. In 1995, 35% of nursing home residents were over the age of 85, and 90% were over the age of 65. There is only a small representation of minority elderly in nursing homes: 88% of residents are White. As could be expected from life expectancy data, almost three-quarters (72%) of nursing home residents are women (National Center for Health Statistics, 2002). Importantly, more than 50% of nursing home residents have no living close relatives, which may largely account for the fact that 60% receive no visitors. These figures indicate that one of the contributing factors to nursing home admissions is the lack of family support that might enable the person to continue living in his or her own home. A VARIETY OF LONG-TERM CARE SETTINGS There are many different types of long-term care facilities for the elderly. However, until the creation of national funding legislation in the mid1960s, there were no national standards governing the types of care in any given facility. As a result of the Medicare and Medicaid legislation, extended care facilities (ECFs), skilled nursing home services, and intermediate care facilities (ICFs) were identified and defined in terms of standards of care. Since that time, many of the long-term care institutions have adjusted their services to meet the outlined criteria in order to be eligible for reimbursements. Even so, both more extensive care (such as that provided in long-term care hospitals) and less extensive care (such as that provided in assisted living residences) are still under regulation as defined by individual states and, therefore, are more difficult to define nationally.

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ASSISTED-LIVING RESIDENCES Assisted-living residences are becoming increasingly popular among more affluent older persons and corporations. In addition to hotel chains that have invested heavily in the development of assisted-living complexes, a number of corporations have as their sole business the development and operation of assisted-living complexes. Assisted living has been defined as “a special combination of housing, personalized supportive services and health care, designed to meet the needs—both scheduled and unscheduled—of those who need help with activities of daily living” (Utz, 2003, p. 380). It can also been viewed as a service bridging the gap between living in the community and nursing homes or as an alternative to nursing homes. Assisted-living facilities (ALFs) vary across the United States. This variation can be seen in the regulations of individual states, the characteristics of the facility, and the managerial experience and training of the staff (Utz, 2003). In general, ALFs provide B B B B

Twenty-four-hour assistance with scheduled and unscheduled needs; Social and recreational activities; Three meals a day in a dining room; and Laundry, housekeeping, and transportation.

A variety of other amenities may also be available including beauty salons, libraries, and exercise equipment (National Center for Assisted Living, 2001).

Regulations In a majority of states, there is still only minimal regulation of ALFs. As regulations impose stricter requirements on these residences, costs may increase. In 2003, the average cost in ALFs was $2,379 per month, an increase of 10% from the previous year. There was wide geographic variation in the average cost. In Washington, DC, the average cost was $4,429 per month, but only $1,020 per month in Jackson, Mississippi. As two-third of assisted-living residents pay these costs from their own funds, it does not appear that these facilities are an option for lower-income elderly. Despite the high costs, the growth in the number of these facilities has been steady. Between 1998 and 2003, the number of ALFs grew by 48% to a total of

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36,999 communities (Metlife, 2004). As ALFs increase in number, there is concern about the quality of care that they provide. Regulations have been proposed that would prevent small hotels or board and care residences from saying they provide “assisted living.” Data from ALFs indicate that their residents clearly need a range of help. Among residents living in these facilities in 2000, 30% used a walker, and 15% used a wheelchair. While 27% of the residents need help with 4 – 5 of the activities of daily living, only 19% could carry out these activities by themselves. Approximately three-quarters of the residents require some assistance with the “instrumental activities of daily living” such as transportation, shopping, taking their medications, and managing their money (National Center for Assisted Living, 2001). The withdrawal of some hotel chains from this market indicates that there may be some overbuilding of these facilities or that it is becoming increasingly difficult to make a profit and still provide the services that residents of these facilities need. Housing for the elderly should respond to the wide variation in the needs of older persons. The growth in the interest and availability of assisted or congregate housing is a response to the need for housing among those elderly who cannot continue to maintain full independent living, and yet are not in need of some form of full-service institutional setting. In part, the increase in need for this type of housing is related to increased average age longevity, a phenomenon in which a greater proportion of the total population is over 75 years of age and has conditions that require some forms of care, in addition to basic housing needs.

Service Needs Service needs in housing programs often increase as the tenants age. Tenants who entered the housing program as healthy, independent persons find they need additional service supports with advancing age. New, unanticipated services are then required. Congregate housing is an environment that provides enough services to enable many impaired elderly to remain in a community-based residential situation. Lawton (1976) focuses more precisely on the services that might be available in such a congregate housing situation: “Congregate refers to housing that offers a minimum service package that includes some on-site meals served in a common dining room, plus one or more of such

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services as on-site medical/nursing services, personal care, or housekeeping” (p. 239). In contrast, assisted or “sheltered” housing as operated in many states offers a more extensive package of services, with an emphasis on meals and personal care. Some states are instituting subsidized assisted housing in single-family homes. Assisted housing helps with personal needs but is not a care facility. Individual residents remain responsible for their own care with support services available as needed. Assisted housing does not have ongoing health services. The growth in congregate housing has come long after the availability of both independent-living housing situations and institutional settings. Congregate housing was authorized in 1970 in the congregate housing provision of the Housing and Urban Development Act. By 1990, almost $50 million had been appropriated for congregate services. These funds supported services for approximately 1,900 residents living in 60 projects. Although no funds for new congregate housing efforts have been made available since 1995, expiring grants have been continued on a year-to-year basis. Given the increasingly older population of the 202 units, it is not surprising that many of the projects are interested in providing either congregate meals or housekeeping services for residents. Despite the need for congregate services in many housing facilities, caution has been recommended in their development. As Lawton (1976) pointed out: “An environment that demands active behavior from its inhabitants facilitates maintenance of independent function. Conversely, the presence of too easily accessible services will erode independence among those who are still relatively competent” (p. 240). Whatever the validity of this belief, providing additional services does require additional money that cannot be fully recouped from fees charged to the residents. Further, the provision of these services could possibly duplicate other community resources. In October 2004, New York enacted new regulations for assistedliving residences. These regulations resulted from injuries or deaths at several facilities. The state health department must now license ALFs in New York. The range of services that they must provide is defined. Requirements are most stringent for facilities that want to accept incontinent patients, nonambulatory residents, or dementia patients. Service plans must be developed for each resident and updated every six months. Residences must be inspected every 18 months for violations (AARP, 2004).

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EXPERT’S CORNER Darlene Yee-Melichar, EdD, CHES Professor and Coordinator, Gerontology Program School of Social Work, College of Health and Human Services San Francisco State University Assisted Living I frequently need to explain to older adults and their families that assisted living recognizes the country’s growing elderly population, and the implications of this demographic trend in the continuum of care. Assisted living is the fastest-growing alternative in long-term care, and it often represents a level of care that helps to postpone the need for nursing-home placement. Assisted living enables older adults to age in place and provides residential care and supportive housing to older adults capable of functional independence. Assisted living may also provide for the health, personal care, and social needs of older residents. Assisted living is in a period of diversification and expansion; the professional requirements for managing and directing the daily operations of ALFs vary depending on state regulations. In my work with assisted-living administrators, they remind me that there is a critical need to educate and train students with the knowledge and skills to address the complex issues in aging, health, and social services. It is essential that students learn about the core competencies required in assisted-living administration (ALA). These include organizational management, human resources management, business and financial management, environmental management, and resident care management. I have coordinated an academic emphasis in long-term care administration (LTCA), taught courses in ALA and nursing-home administration (NHA), and directed administrator-in-training (AIT) internships. In my work with ALA and AIT students, it is apparent that current and future challenges in assisted living for older residents include, but are not limited to, the following: (1) access-availability of ALFs, geographic proximity to family and friends, and resident care placement issues; (2) affordability—costs for ALFs vary from one state to another, high out-of-pocket expenses, and need for third-party

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reimbursements; and (3) quality-licensing of facilities; periodic inspections; resident assessments; qualifications of staff, and exploring the need for federal or standardized regulations. Clearly, there are many opportunities to contribute to the work in assisted living for older residents.

DISCUSSION QUESTIONS 1. How can older adults and their families select the best assisted-living facility for services when needed? 2. Where can help be obtained to locate assisted-living facility services? 3. What are the core competencies required in ALA?

SKILLED NURSING FACILITIES Skilled nursing facilities are required to provide certain services, including the emergency and ongoing services of a physician, nursing care, rehabilitative services, pharmaceutical services, dietetic services, laboratory and radiologic services, dental services, social services, and activity services (Glasscote et al., 1976, p. 34). Some of these services must be a part of the facility itself, but rehabilitative, laboratory, radiological, social, and dental services may be provided by formal contractual agreement with outside resources. There must be visits by attending physicians every 30 days of the first 90 days of a patient’s stay. After that time, if justified, the visits can be reduced to every 60 days. A patient-care plan should also be prepared and reviewed regularly, so that the patient is assured of receiving services that are needed, and changing conditions are translated into appropriate care. Quality of Care In 1986, a report of the National Institute of Medicine criticized the quality of care and life in nursing homes. The report stressed the need for greater federal involvement in the regulation of nursing home operation.

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In 1987, new federal rules were passed in Congress that strengthened inspection of nursing homes accepting Medicare or Medicaid funds. Although the states can waive the rules in some cases, these homes must have a registered nurse on duty at least 8 hours each day and a licensed practical nurse on duty at all times. A social worker with a bachelor’s degree in social work is required at all homes of over 120 beds. In addition, new training requirements for aides were instituted. Regular programs of activities, use and preparation of drugs, and physical facilities in relation to fire and safety codes are carefully delineated for skilled nursing facilities. In general, skilled nursing facilities can be characterized as medical institutions that care for patients who are severely ill. The most recent development in skilled nursing home care is the growth of separate units within existing homes, or even separate nursing homes, for Alzheimer’s disease (AD) patients. These “special-care units” began in the 1980s. By the mid-1990s, 15% of nursing homes now had special care units that provided 50,000 beds to older persons with AD or related disorders. These units varied in size, staff, auspices, and programs (Advisory Panel on Alzheimer’s Disease, 1996). This diversity provides options for patients and their families; however, it has made evaluation of the effectiveness of the program difficult. Although it may be easier for staff to care for residents in these specialized settings, research does not indicate that special care units improve their functioning (Chappell & Reid, 2000). Another alternative model attempts to develop nursing homes that are smaller and more personal in orientation than the large multibed facilities that are now predominant. Termed the “Green House Project,” these nursing homes focus on a model that stresses the social environment. The homes aim for about 10 residents with private bedrooms centered around a common area. The first Green Houses opened in Tupelo, Mississippi, in 2003 (Baker, 2005).

BOARD AND CARE HOMES AND DOMICILIARIES Board and care homes are widely available, but there has been little information available about these facilities. Because there are no national regulations governing this level of care, each state has adopted its own terminology and regulations that govern the type of care given. Probably the

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best definition for this general level of care is contained in the Colorado regulations: An establishment operated and maintained to provide residential accommodation, personal services, and social care to individuals who are not related to the licensee, and who, because of impaired capacity for self-care, elect or require protective living accommodations but who do not have an illness, injury, or disability for which regular medical care and 24-hour nursing services are required. (Glasscote et al., 1976, p. 58)

In summary, this level of care is primarily personal and custodial. Regulations for board and care homes usually require that B B B B

Local and fire safety codes be met; There be a full-time administrator responsible for the supervision of staff, residents, and safety; Nursing personnel be on call most of the time; and There be facilities for occasional distribution of medication.

Board and care homes may be called “foster care,” “residential care,” “sheltered care,” or even “assisted living.” They usually have no more than 10 residents. These homes usually provide assistance to the older person with the ADL, supervision of medications, laundry and linens, cleaning services, and protective supervision (Reisacher & Hornboster, 1995). As Reisacher and Hornboster make clear, board and care residences are neither nursing homes or congregate housing nor shared housing or rooming houses. Although at least 30,000 licensed homes have been identified in studies (Hawes, Wildfire, & Lux, 1993; Lewin/ICF and James Bell Associates, 1990), there are estimates that an almost equal number of unlicensed homes exists (U.S. House of Representatives, Subcommittee on Health and Long-Term Care Policy, 1989). The licensed homes provide more than 600,000 beds (Advisory Panel on Alzheimer’s Disease, 1996). As Lyon (1997) notes, board and care homes predominantly serve lowincome older persons who have major functional impairments and cannot rely on family resources to provide care. Residents of board and care homes are usually required to arrange for their own medical care and, in many instances, provide for their own social activities. In effect, this level of care provides a protected environment, meals, and some personal care services but does not restrict or

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organize the activities of the residents. Many low-income board and care residents are able to pay for care through their Supplemental Security Income checks. A 1991 study found that 90% of board and care homes were private and two-thirds were for-profit facilities. As expected, the majority (66%) of residents were older women, two-thirds of whom were over the age of 65, and a quarter of the residents were over the age of 85 (Assistant Secretary for Planning and Evaluation, 1991). Domiciliaries and homes for the aged are primarily nonprofit and often church-sponsored homes that provide personal care but require that persons entering be healthy. These homes go well beyond the standards set by the various states in that they usually provide comprehensive activities, social services, and personal care programs. Many of the residents have private rooms, and rarely are there more than two people in each room. Residents can select activities that are offered and are free to come and go as desired. These facilities can be small, often accommodating as few as 50 residents, but in some cases are large enough to accommodate as many as 300 residents. Attached to many of these homes for the aged are intermediate care or skilled care nursing units to provide appropriate medical treatment for those who need such care. Depending on the size of the facility, the home will either be able to continue to care for a resident who needs medical care on a regular basis or will transfer that person to a regular skilled or intermediate care facility.

RETIREMENT COMMUNITIES Retirement communities can range from small mobile home subdivisions to sizable communities like Sun City, Arizona. The communities can include apartments, semidetached houses, and units that can be purchased or rented. Beyond the living units themselves, varying forms of recreation and supportive services can be offered. The country’s first development for senior citizens—Youngstown, Arizona—was founded in 1954 and incorporated as a retirement community in 1960. Most retirement communities have age as the key entrance requirement. Most communities that use the term “Active Retirement Living” limit the ownership of homes to individuals over age 55. Other members of the family must be at least 45 years of age, and no residents can be below the age of 18. The general characteristics of retirement communities include entrance requirements, complete community planning,

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and relatively low-cost housing, coupled with high levels of amenities. The concept of low-cost housing, however, is not universal in retirement communities.

Model Communities Retirement communities such as Sun City have extensive recreation facilities. The usual construction pattern is of single-family attached and detached houses in cul-de-sac arrangements, with the clubhouse as the focal point. One example of a successful retirement community is Leisure World in Laguna Hills, California now known as the City of Laguna Woods. Begun in 1963, by spring 1977, it had nearly 12,000 residences and a population of 19,000. Leisure World was designed to provide security, quick accessibility to good health care, good nearby shopping, good transportation, excellent facilities for recreation and adult education and additional activities to ensure freedom from boredom (The Historian, 2009). The importance of security in a retirement community is illustrated in the efforts Leisure World has made: Hundreds of Leisure World residents say one of the principal reasons they came to live in Leisure World is security. . . . The entire residential area is surrounded by about 8.5 miles of six-foot wall or fence. In some places the wall is topped by barbed wire. Entrance to the residential areas is only through one of eleven guarded gates. Cars of residents have a special symbol attached to the front bumper; all others are stopped for identification and for permission by a resident to pass through . . . a security force of 255 officers is backed up by full-time, armed officers who have specific police training. (Leisure World, 1977, p. 9)

The facilities at Leisure World are extensive. Minibuses circulate over 11 routes, fare-free, carrying 88,000 passengers a month. There are five clubhouses, concerts, movies, stage presentations, and 167 clubs and organizations. The enormous sports and recreational opportunities range from swimming pools and horseback riding to a variety of crafts facilities. All of the activities offered by Leisure World are free to residents, except golf and horseback riding. Health facilities are available but on a fee-for-service basis. The success of Leisure World in Laguna Beach is evidenced by the fact that the houses are sold by lottery drawn from the extensive waiting list.

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Growth of Retirement Communities Despite potentially large purchase costs and monthly maintenance fees, retirement communities are growing in popularity, particularly because they offer security, recreation, good housing, and social opportunities with neighbors of a similar age. Researchers commenting on a survey of residents in a number of retirement communities note: Most persons living in a retirement community have weighed the advantages and disadvantages of this life style. The evidence gathered on thirty-six communities suggests that there is a high amount of satisfaction with their choice. Despite problems or uncertainties about land ownership, these communities deliver the kind of environment that their residents desire. (Streib, LaGreca, & Folts, 1986, pp. 101 –102)

Although the pattern may change as the residents age, many retirement communities do not provide extensive services for their residents. Volunteer organizations in Crestwood Village, New Jersey, provide transportation and free medical equipment to residents when needed. “Continuing care retirement communities” or “life care communities” are more oriented to service provision for residents. Life care communities offer three types of contracts: B B

B

An “extensive contract” provides unlimited nursing care. A moderate contract provides a specific amount of nursing care. After the limits of this amount of care are reached, additional care is provided for a fee. A charge is levied for all services (fee for service).

“Life care communities” include contracts that guarantee to provide all levels of care for the residents (Episcopal Homes Foundation, 2004). Financial Aspects These communities grew rapidly during the 1980s and guarantee to provide care for residents throughout the remaining years of their lives, regardless of their physical conditions. In many cases, residents pay a large entrance fee that may be as high as $200,000. In addition, there is a monthly charge of $1,000 –$2,500 based on the size of the apartment, its location, amenities provided in the community, and number of individuals living in the apartment (Health Insurance Information, 2002). As in many

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life care communities, these monthly charges do not cover most nursing home costs. Some life care communities guarantee to return a specific percentage of the entrance fee to the individual’s estate, whereas others retain the whole fee. Because of the long-term care nature of the services guaranteed, financial demands on life care communities are extensive. Some life care communities have failed because of inadequate financial resources, and some have had to raise the monthly resident charges drastically to meet their operating costs. In response, states have begun to scrutinize the economic resources of proposed life care developers, and 30 states now regulate these communities. Life care communities based purely on rental payments are also becoming available. In general, the resident population of life care communities tends to be over 75 years of age. Recently, in order to broaden the market for these communities, there has been a movement away from entrance fees to communities that only charge monthly fees; these are adjusted according to the service needs of the residents. Under this plan, individuals who require nursing care pay a higher monthly fee than other residents. As continuing care communities have grown in number, they have also begun to vary in what they offer. While some provide nursing care on the premises, others are linked to nursing homes or guarantee a resident priority in obtaining a nursing home bed (Lewin, 1990). As these communities are expected to grow in number, the development by hotel chains and nursing-home firms clearly targets an affluent segment of the older population.

Naturally Occurring Retirement Communities (NORCs) Although the discussion of retirement communities usually focuses on new planned developments, there has also been the movement toward what is labeled as “naturally occurring retirement communities.” These communities come into existence as the residents of a community or housing complex grow older but stay in their own homes. The result is a large proportion of older persons in the area. In 1994, New York State began to provide supportive services for these types of retirement communities. The services are provided in housing developments built with government subsidies or loans but not specially built to serve older persons. In addition, older residents must occupy 50% of the units. In the 14 NORCs, a variety of services, ranging from case management to health care, are provided for residents (Pine & Pine, 2002).

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EXISTING HOUSING CERTIFICATE PROGRAM Accessory housing utilizes parts of single-family homes as separate apartments for older relatives. “Granny flats,” or Elder Cottage Housing Opportunities (ECHO) units, have been adopted from Australia. These freestanding manufactured homes are adjacent to existing single-family units, usually homes owned by children of the older individual living in the ECHO facility. Although ECHO units can be very cost effective, they also raise zoning issues in many residential communities zoned exclusively for single-family homes. ECHO housing units are now eligible for Section 202 financing.

ACTIVITIES AND QUESTIONS 1. Review the principles put forth by Sharlach and take a walk through your neighborhood to identify improvements that could be made in your community to create a community for all ages. 2. Prepare a list of housing-related questions and call the housing authority in your area to set up an appointment to discuss policies and programs related to the elderly. a. Are there currently waiting lists for senior housing? b. What are the main challenges in housing policies and programs? 3. Consider yourself at age 75. Will you want to continue to maintain a household and property? Will you want to live with others your own age? Will you want to live in a congregate setting? Make a list of the pros and cons of a variety of living options. REFERENCES AARP. (2001). A summary of federal rental housing programs. Retrieved April 19, 2004, from http://research.aarp.org/il/fs85_housing.html Abshier, G., Davis, Q., Jans, S., & Petranek, C. (1977). Evaluation of the Cape-Smile home repair program. Evansville, IN: Indiana State University. Advisory Panel on Alzheimer’s Disease. (1996). Alzheimer’s disease and related dementias: Report to Congress. Washington, DC: U.S. Government Printing Office. Assistant Secretary for Planning and Evaluation. (1991). ASPE research notes. Licensed board and care homes: Preliminary findings from the 1991 National Health Providers Study. Retrieved September 26, 2004, from http://www. aspe.hhs.gov/daltcp/reports/rn06.htm

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Chapin, B. (2003, October 11). More elderly choose foster homes. Times Herald. Retrieved January 16, 2005, from http://www.thetimesherald.com/news/ stories/2003101 l/localnews/434505.html ElderWeb. (2010). Nursing homes. Retrieved May 6, 2010, from http://www. elderweb.com/taxonomy/term/6370 Episcopal Homes Foundation. (2004). Retirement with life care. Retrieved June 6, 2010, from http://www.lifecare.org/continuing_care_retirement.html Glasscote, R., Biegel, A., Jr., Clark, E., Cox, B., Wiper, J. R., Gudeman, J. E., et al. (1976). Old folks at homes. Washington, DC: American Psychiatric Association and the Mental Health Association. Government Accountability Office. (2005). Elderly housing: Federal housing programs that offer assistance for the elderly. Washington, DC: Author. Hawes, C., Wildfire, J., & Lux, L. (1993). National summary: The regulation of board and care homes: Results of a survey in the 50 states and the District of Columbia. Washington, DC: American Association of Retired Persons. Health Insurance Information. (2002). Continuing care retirement communities or life care for long-term care. Retrieved September 26, 2004, from http://www. healthinsurance.info/HICCR.HTM Lawton, M. (1976). The relative impact of congregate and traditional housing on elderly tenants. The Gerontologist, 16, 237– 242. Leger, M., & Kennedy, S. (1990). Final comprehensive report of the freestanding housing voucher demonstration: Vol. 1. Washington, DC: U.S. Department of Housing and Urban Development. Lewin, T. (1990, December 2). How needs, and market, for care have changed. New York Times, A36. Lewin/ICF Inc. & James Bell Associates. (1990). Descriptions of supplemental information on board and care homes included in the update of the National Health Provider Inventory. Washington, DC: U.S. Department of Health and Human Services. Lyon, S. (1997). Impact of regulation and financing on small board and care homes in Maryland. Journal of Aging and Social Policy, 9, 37 –50. McCleary, K. (1986). Minor repairs for older homeowners. Aging, 352, 2–5. Mcllwain, J. (2004). Cited in W. Smith, The good life in the big city. AARP Bulletin, 45(6), 4 –8. Metlife. (2004). Metlife market survey of assisted living costs. Westport, CT: Metlife Mature Market Institute. Mollica, R. (2003). Coordinating services across the continuum of health, housing and supportive services. Journal of Aging and Health, 15, 165–188. NAMI. (2004). Threat to Section 8 continues. Retrieved January 12, 2005, from http://www.nami.org/Template.cfm?Section¼whats_new43&template¼/ ContentManagement/ContentDisplay.cfm&ContentID¼19058 National Association of Home Builders. (2005). National older adults housing survey: A secondary analysis of findings. Upper Marlboro, MD: NAHB Research Center, Inc. Retrieved from http://www.toolbase.org/PDF/CaseStudies/NOAH SecondaryAnalysis.pdf

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Newman, S., & Sherman, S. (1977). A survey of caretakers in adult foster homes. The Gerontologist, 17, 431– 437. North, W. (2008). North Passages: A Blog by Will North. http://abytesgen01. securesites.net/will_north/2008/10/home-blog-1-a-sense-of-place.html#more. Oktay, J., & Volland, P. (1981). Community care programs for the elderly. Health and Social Work, 6, 31–47. Oktay, J., & Volland, P. (1987). Foster home care for the frail elderly as an alternative to nursing home care: An experimental evaluation. American Journal of Public Health, 77, 1505–1510. Pine, P., & Pine, V. (2002). Naturally occurring retirement community-supportive service program: An example of devolution. Journal of Aging and Social Policy, 14, 181 –193. Reisacher, S., & Hornboster, J. (1995). A home away from home. Washington, DC: American Association of Retired Persons. Retsinas, J., & Retsinas, N. (1992). Housing loopholes may hurt elders. Aging Today, 13(1), 2. Romano, J. (1996, June 23). For reverse mortgages, a Fannie Mae imprimatur. New York Times, A19. Sharlach, A. (2007). Creating aging-friendly communities. Generations, Journal of the American Society on Aging, 33(2), 5–7. Stock, R. (1997, December 18). Living independently in old age, without going it alone. New York Times, BIO. Streib, G., LaGreca, A., & Folts, W. (1986). Retirement communities: People, planning, prospects. In R. Newcomer, M. Lawton, & T. Byerts (Eds.), Housing an aging society (pp. 94–103). New York, NY: Van Nostrand Reinhold. The Historian. (2009). The History of Leisure World, 1963–1975. The Historian, V3(4). Retrieved from http://lagunawoodscity.org/images/lagunawoodscity/ Historian%2009%20Jul-Aug.pdf U.S. Department of Housing and Urban Development. (1973). Housing in the seventies. Washington, DC: U.S. Government Printing Office. U.S. Department of Housing and Urban Development. (1999). Recent research results: New plan addresses housing needs of elderly. Retrieved May 3, 2004, from http://www.huduser.org/periodicals/rrr/rrr8_99/rrrr8_99art4.html U.S. Department of Housing and Urban Development. (2000). Recent research results: New facts about home housing assistance by housing programs. Retrieved September 12, 2004, from http://www.huduser.org/perodicals/ rrrr/rrr_10_2000/1000_6.html U.S. Department of Housing and Urban Development. (2004a). CDBG grantee reported accomplishments. Retrieved January 16, 2005, from http://www.hud. gov/offices/cpd/communitydevelopment/library/accomplishments/index.cfm U.S. Department of Housing and Urban Development. (2004b). A picture of subsidized households: Summary of the United States. Retrieved May 3, 2004, from http://www.huduser.org/datasets/assthsg/statedata98/HUD4US33.txt

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U.S. General Accounting Office. (2003). Report to the U.S. Senate Special Committee on Aging. Elderly housing: Project funding and other factors delay assistance to needy households. Washington, DC: U.S. Government Printing Office. U.S. House of Representatives, Select Committee on Aging. (1976). Elderly housing overview: HUD’s inaction. Washington, DC: U.S. Government Printing Office. U.S. House of Representatives, Subcommittee on Health and Long-Term Care Policy. (1989). Board and care homes in America: A national tragedy. Washington, DC: U.S. Government Printing Office. U.S. Senate, Special Committee on Aging. (1975). HUD’s response to the housing needs of senior citizens. Washington, DC: U.S. Government Printing Office. U.S. Senate, Special Committee on Aging. (1990). Developments in aging: Vol. 2. Washington, DC: U.S. Government Printing Office. U.S. Senate, Special Committee on Aging. (1991). Developments in aging: I 990; Vol. 1. Washington, DC: U.S. Government Printing Office. Weichert, J. (n.d.). Testimony to the U.S. Senate Committee on Banking, Housing and Urban Affairs. Retrieved January 13, 2005, from http://www.hud.gov/ offices/cir/100902w.cfm

9

Support for Older Adults and Caregivers

BACKGROUND It has been estimated that 80% of all long-term services used by older Americans are provided not by a formal service or program, but by family and friends (Select Committee on Aging, 1987). Helping each other manage illness or other life challenges is a central function of family, and for most of us, family is the place we turn to first for help and advice. It has been estimated that one out of five households are involved in providing care and assistance to an older American (National Alliance for Caregiving [NAC], 2009) and that the value of this care, if it were to be performed by a paid professional, could be as high as $375 billion annually (AARP, 2007). Today, caregiving for an older adult is more challenging than in the past. Families are smaller, the majority of women are working, and many families with care responsibilities also include children. The home and community-based service network developed to help older Americans is now a network that supports family caregivers as well. When the National Family Caregiver Support Program (NFCSP) was passed by Congress in 2000, support for caregivers was added to the mandated responsibilities of area agencies on aging and the aging network of services. In this chapter, we will discuss informal caregiving and the specific services provided by the NFCSP, as well as commonly available community support services that help the older adult caregiver, adult children who are caregivers, and the older person with long-term care needs. The NFCSP was funded in 2001 by Congress. The funding was allocated to each state and territory based on the percentage of the population 70+ years of age. The overall goal was to provide a range of services and support programs to allow older informal caregivers to provide care in the community for as long as possible. The family caregiver is defined as 135

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an adult who provides help to an older individual. In addition to the family caregiver, the legislation targeted a grandparent or another older person (60 years or older) who is the primary caregiver of a child as a result of the inability of the parent to provide this care. Older adults who are providing care for a child with legal standing such as guardianship or who are raising a child “informally” are provided support services under the NFCSP (Link, 2003). Five types of services are mandated, including 1. 2. 3. 4. 5.

information about available services; help in getting access to services; counseling, support groups, and training; respite care; and supplemental services.

Supplemental services are defined as services that focus on the well-being of caregivers and are limited. A supplemental service may include legal and financial planning, home or auto modifications, emergency response systems, and the like (USDHHS/AoA, 2004). In FY 2008, the National Family Caregiver Support Services received $153 million in funding. During FY 2008, more than 600,000 caregivers received some services. Caregivers were assisted in locating services that would help them and their care recipient—more than a million contacts were provided to these caregivers. Approximately 140,000 caregivers used counseling or training services to help them better manage the care they were providing, and 73,000 caregivers received respite care services (AoA, 2010). Monies are allocated to two different NFCSP programs—grants to states (Title III, Part E) and grants to Native Americans (Title VI, Part C).

WHAT FAMILY CAREGIVERS NEED Caregivers who are assisting an older person are often involved in providing a variety of services that are commonly categorized as either instrumental services or assistance with activities of daily living (ADLs). Although most informal caregivers are helping an older adult, there are also other caregivers who provide help to an adult child. This section includes information primarily about caregivers who are helping someone who is 50 years of age or older. Keep in mind as you read this section that not all caregivers are adult children or younger. There are many older people who are also providing ongoing assistance to a friend, spouse, or sibling. Both adult

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caregivers who are helping older persons and older persons who are providing care for a peer are supported by programs of the NFCSPs and affiliated community support. Caregivers help care recipients by assisting them with activities they have difficulty performing themselves. ADLs refer to the basic daily needs of all individuals—bathing, eating, transferring, toileting, and incontinence care. Instrumental help, sometimes referred to as instrumental activities of daily living (IADLs), includes a wide range of activities, such as helping with grocery shopping or meal preparation, housework, errands and transportation, medication management, bill paying, or managing the services used by a care recipient. Table 9.1 displays the percentage of caregivers who help with each type of activity based upon the 2009 National Alliance for Caregiving/ AARP (NAC/AARP) national survey of caregivers. NAC/AARP (2009) Most of the caregiving is being done for older adults—commonly a parent. The majority of caregivers are women with an average age of 50 years. These caregivers reported that they spent an average, of approximately 19 hours a week on caregiving activities and, on average, have been TABLE 9.1 Percentage of Caregivers Who Provide Help with ADLs and IADLs Type of ADL/IADL ADLs

IADLs

Percentage Helping

Dressing

46

Toileting

34

Bathing/showering

26

Incontinence care

20

Feeding

19

Transportation

84

Housework

75

Grocery shopping

75

Meal preparation

64

Managing finances

62

Giving medications

42

Arranging/supervising paid services

37

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providing care for 4 years. One of the compelling reasons that Congress passed the NFCSP is the importance of their caregiving to the nation. The value of this unpaid care is nearly as large as the entire Medicaid budget on an annual basis. Policy makers recognize the importance of supporting caregivers so that they are able to continue to provide help and support to family members or friends. In surveys of caregivers, many report that their greatest need is information about the health of the person they are helping, ways to keep that person safe at home, selecting a home care agency, easy activities to do with their care recipient, and how to select an assisted-living facility or a nursing home. A little less than half (49%) of the respondents in the NAC survey who were caring for someone over the age of 50 used a paid service to supplement the support they were providing. About 45% reported that they had made modifications to the home of the care recipient, and 16% reported that they had received some formal training in caregiving. The needs of caregivers may include one or more of the following: B B B B B B B

information about the underlying illness or condition of the care recipient; information about services that would be helpful to the care recipient; supportive services such as caregiver support groups and caregiver training; respite services; help with making the home a safe place for the care recipient; financial help with services and home modification; and transportation and escort services.

ADDITIONAL SUPPORTIVE SERVICES: HOME-DELIVERED MEALS Home-delivered meals (“Meals on Wheels”) are provided to homebound persons and enable those who cannot buy food or prepare their own meals to have good nutritional meals on a regular basis. While the funding stream for meals is separate from the NFCSP monies, it is important to address this here as a support not only to older adults but also to their caregivers. Approximately 90% of all those receiving homebound meals are aged 60 years and above. The purpose of the program is to provide either one or two meals per day, 5 days a week. These delivered meals may enable many of these aged to remain living in the community.

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Home-Delivered Meals: A Brief History Programs of home-delivered meals began in England immediately following World War II. The first program in the United States began in Philadelphia in 1955. The longest continuously operating program is Meals on Wheels of Central Maryland, Inc., which began in 1960 in Baltimore and was modeled after the English programs. Early Models The early models of home-delivered meal programs were operated locally and largely by volunteer organizations. Originating in a church kitchen, these programs served from 15 to 100 clients, generating payment from clients either through a fixed fee or on a sliding scale. From 30 to 300 volunteers would be involved in any given local program. Referrals would come from friends, families, professionals in the field, or the elderly themselves. The number of daily meals and the costs of these meals both depended on the facilities available for meal preparation. Menus, number of meals served, amount, and cost were determined by the local organization sponsoring the program. Volunteers were primarily retirees and nonworking women, each of whom volunteered approximately 2 hours a week. The hot meal was delivered at noontime, and if a second meal was provided, it was a cold evening meal delivered at the same time as the hot meal. The early programs were sponsored by local churches, community groups, or nonprofit organizations and were largely self-sufficient, based on the fees charged to the participating clients. The Active 1970s In the early 1970s, government funds resulted in either new programs under government sponsorship or links between nonprofit local programs and government agencies. With the introduction of these new support mechanisms, uniform standards, quality control, and uniformity began. The 1978 amendments to the Older Americans Act (OAA) for the first time designated a separate authorization for home-delivered meals. This program was to be administered through the nutrition program. In some situations, there were no preexisting home-delivered meal programs. Administration on Aging (AoA)-funded home-delivered meal programs primarily served clients who were congregate-site participants, whereas locally funded programs served other eligible clients. Because congregate nutrition participants often pay only when they feel they can, whereas

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those being served by a locally self-supporting home-delivered meal program pay a fixed fee, the Meals on Wheels cost to a client is often as much as 5 times higher. This can cause confusion when a client moves from one program to the other. The 1978 legislation with separate authorization for home-delivered meals brought this issue of privately operated, largely volunteer groups vis-a`-vis federally sponsored programs to a head. The authorizing legislation stated that home-delivered meal programs under the separate authorization were to be administered through the federal nutrition program, with preference for funding given to local preexisting voluntary homedelivered meal programs. Since 1978, OAA funding for home-delivered meals has grown dramatically. In a home-delivered meal program, two volunteers—one acting as a driver, one as a visitor—visit 8 to 10 different clients each day. The volunteers spend 5 minutes with each client while delivering the meal. The homedelivered meal program’s primary function is to prepare and deliver the meals, but it also provides a few minutes of friendly visiting. If additional services are needed, the client is referred to other support systems. Realizing the Importance of the Connections When the home-delivered program is attached directly to the nutrition congregate site, the nutrition participants themselves often package and deliver the meals. In this way, those who are attending can keep in touch with participants who are unable to attend. As was pointed out in Congressional testimony (Cain, 1977), the longer the congregate nutrition program is available, the greater is the potential for home-delivered meals as part of the program. One project found that after 3 years, up to 30% of the participants were receiving home-delivered meals because of changes in their physical condition. The interrelation of the two programs is important so that those who are eligible for the nutrition program can continue, even when physical limitations temporarily make visiting the center impossible. The homedelivery program can speed up recovery and perhaps, in many situations, make a return to the congregate site possible. THE EMPLOYED CAREGIVER The 2009 NAC/AARP survey of caregivers found that 60% of caregivers to a person older than 50 years are employed. These working caregivers are often faced with a difficult and complicated set of responsibilities that

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affect their workplace as well as their family life. Workplace accommodations, such as coming to work late, leaving early, or missing work days to manage care responsibilities, are common. Approximately 17% take a leave of absence from work, 4% take early retirement, and another 6% quit work. These decisions have detrimental effects on the lifetime earnings of the caregiver—the basis of their Social Security and retirement savings. Family-friendly employers have designed programs and policies to support employed caregivers. Flexibility at work is an important policy for many employed caregivers. It allows them to modify their schedules to accompany the care recipient to medical appointments and manage care emergencies. Some family-friendly employers have started resource and referral programs to link employed caregivers with community services. Reaching caregivers where they work will likely be an important marketing strategy for community-based services in the future. In 2010, President Obama tasked his Council of Economic Advisors to examine flexibility at work and the economics of workplace flexibility. This study found that less than one-third of full-time workers and 39% of parttime workers report that they have flexibility in their work hours. A very small fraction (15%) of the workforce reports that they work from home at least once a week. Nonetheless, flexibility in the workplace can save employers money. Flexibility reduces turnover and absenteeism and can increase productivity. Workplace flexibility is a benefit for all types of families, including those who are caregiving for an elder, those with children in the home, those who are raising grandchildren, and those with chronic illness or who care for someone in their family with a chronic disease.

THE LONG-DISTANCE CAREGIVER Long-distance caregivers are those who live at a distance from the person they are helping. Researchers have used the standard of living more than an hour away to define long-distance caregiving and to explore the special challenges these caregivers face. Although the U.S. population is a relatively stable population in terms of geographic mobility, there are millions of Americans who live at a distance of their aging parents. Longdistance caregivers are, as a group, under more stress as a result of the distance. They are unable to stop by and check on the well-being of their family member(s) and, like the caregiver who is co-resident with the care recipient, most likely to be at risk for adverse work outcomes, such as taking leave or leaving the job entirely. The first national survey of long-distance

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caregivers was conducted in 1996 by the National Council on the Aging (Wagner, 1997). It is estimated that between 11% and 15% of caregivers for older adults are long-distance caregivers (Neal, Wagner, Bonn, & Niles-Yokum, 2008). Long-distance caregivers incur travel costs and, often, costs associated with the purchase of services to support the care recipient in the community. Long-distance caregivers can benefit from geriatric care managers to help them make plans for care and/or help manage that care. The Eldercare Locator, a national system of information and referral, can provide information to the long-distance caregiver about community services available near the care recipient. In addition to the Eldercare Locator, some area agencies on aging have begun partnerships with employers in their area that provide information and services to employed caregivers. These partnerships are an excellent way to improve the reach of an aging organization and to build working relationships with employers as they work to accommodate the needs of a changing and aging workforce.

EXPERT’S CORNER Gail G. Hunt CEO, National Alliance for Caregiving Bethesda, MD The Future of Family Caregiving As I look into my crystal ball, I see family caregiving increasing in importance because of the increasing need to care for people living longer with chronic disease and a dwindling supply of paid caregivers. Family and friends are already providing nearly 80% of the longterm care in this country unpaid. Those responsibilities will continue into the future. However, I do see the following trends in caregiving: B

More caregiver assessment. In some states, such as California, there is already a caregiver assessment tool in place—an instrument used by social workers or other professionals to find out about the family caregiver’s abilities, willingness to care, and need for support, including training and respite care. Some sections of the Department

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B

B

143

of Veterans Affairs (the VA) are also testing caregiver assessment tools. Obviously, if you assess needs, you must have resources available to address those needs; if more is being expected of caregivers, we must have the resources available to support them. For example, when an assessment indicates the need for training, we have to know what skills the caregiver lacks or what technology might help, and whether it is better for that caregiver to receive the training in a group, online, or at home. More family caregivers being paid. In a few states, such as Vermont, family members and friends can be paid a minimum wage under relatively small Medicaid waiver programs for some of their time spent caregiving. In approximately 20 states, family members can be paid through a cash voucher that goes to the Medicaid recipient under the Cash and Counseling program, who can then spend it for personal care services from a niece or neighbor or anyone they want. In contrast to these Medicaid low-income programs, the Community Living Assistance Services and Supports Act, a new long-term care insurance program signed into law as part of Healthcare Reform, will allow for a non-means-tested daily cash benefit of at least $50 for people with two or more ADL needs. The beneficiary can pay a family caregiver for services. Wellness programs as support to caregivers in the workplace. Over the past few years of the current recession, the percentage of employers offering corporate eldercare programs has declined from 22% to 11%. At the same time, corporate wellness programs offering exercise, stress management, and good nutrition advice have proliferated. In the future, I expect to see the stresses of caregiving specifically being addressed through these wellness programs, as employers recognize the value of better employee “presenteeism” and productivity as well as better employee health. All these issues contribute to the corporate bottom line.

Through print and broadcast media, there is enormous public awareness of family caregiving. Everyone has a story about a parent or grandparent or other relative who has wreaked havoc with work/family balance or caused a family to slide toward bankruptcy. The future is to move beyond awareness to greater support for family caregivers as the backbone of long-term care.

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GRANDPARENTS RAISING GRANDCHILDREN The NFCSP includes grandparents over the age of 60 raising grandchildren in the target audience for services. According to the 2000 US Census, it was estimated that there were 2.4 million households headed by a grandparent who had primary responsibility for grandchildren under the age of 18. The 2000 Census was the first time that the decennial census included questions about this topic. Congress asked that questions about grandparent/grandchildren households be included in the Census in order to learn about this household type and whether it is temporary or permanent. The Census included grandparents 30 years of age and older. About one-third of grandparents who were responsible for grandchildren were 60 years and older and were more likely than younger grandparents to report caring for children for 5 years or more (Simmons & Dye, 2003). The 2005 – 2007 American Community Survey revealed that, over the 3-year period, there were about 1 million children in the “skipped generation grandfamilies”—families with only the grandparents and the children (Generations United, 2010). This survey also found that many of the children in these households are teenagers. The households are also more likely than parental households to include special needs children. And, finally, one-third of these households had incomes under the poverty level. There are many reasons that grandparents become the guardians or primary caregivers of their grandchildren. Illnesses of the parents, mental health concerns, and substance abuse are often listed as underlying causes. Other situations may include military service, death, and incarceration of one or more parent. Cultural and ethnic factors also play a role in the configuration of “grandfamilies” or kinship care. Whatever the underlying reasons that these grandparents have stepped up to provide homes and security to their grandchildren, they need support for their efforts, and the NFCSP and an expanding network of kinship care services are working to provide this support. The NFCSP requires that the states target those persons with the highest levels of social and economic needs. Older grandparents who are raising their grandchildren are likely to fit this priority with both social and economic needs. The programs offered to the community through the NFCSP include information, counseling, support groups, respite care, and supplemental services. Area Agencies on Aging are also required to coordinate their services with other community services providing similar support, strengthening the community in which grandparents raising grandchildren live (Generations United, 2007).

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Our expert on “grandfamilies” is Linette Kinchen, who directs the GRANDfamilies Program of Chicago.

EXPERT’S CORNER Linette Kinchen Executive Director, GRAND families Program of Chicago Chicago, IL Grandparents raising grandchildren is a national phenomenon that has gained the attention of legal and social policy experts, advocacy groups, and the media. Grandparents assume the responsibility of their grandchildren for many reasons ranging from death to substance abuse. Grandparents are known as “silent saviors” because they provide a safety net for the children they are raising, often preventing them from going into foster care. The best option for children is to remain with family, and many more grandparents are assuming the role of parenting for the second time. These “silent saviors” face a unique set of challenges while assuming primary care of their grandchildren, such as finding appropriate housing, obtaining financial and legal aid, and dealing with physical and emotional challenges. Housing remains a major challenge facing these caregivers, despite passing of the LEGACY (Living, Equitably, Grandparents, Aiding Children and Youth) Act in December 2003: a federal housing law as part of the American Dream Down payment bill, which is exclusively for grandparents and other relatives raising children. The law provides appropriations to create 2 – 4 national intergenerational demonstration projects within HUD’s 202 elderly housing program. To date, Boston, MA, Baton Rouge, LA, Baltimore, MD, Chicago, IL, and South Bronx, NY, are just a few of the localities that have developed this specialized housing. Since 2000, there have been many programs developed across the country to assist grandparents raising grandchildren. The GRANDFamilies Program of Chicago, founded in 2003, focuses on providing “one stop access” for services while also supporting and strengthening the family unit. Services include monthly support groups, assessment and service plan coordination, emergency short-term assistance, housing and utility assistance, legal and counseling referrals, respite

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for both grandparents and grandchildren, advocacy, and technical assistance on issues relating to kinship issues. Despite some accomplishments, there are still not enough monies appropriated by various units of the government to meet the growing need.

LIFESPAN RESPITE CARE PROGRAM In 2006, Congress passed the Lifespan Respite Care Program. This program was designed to expand and enhance the availability of respite services. Respite services are “. . . planned or emergency care provided to a child or an adult with a special need in order to provide temporary relief to the family caregivers of that child or adult” (Public Law 109-442: HR 3248). Funding for the Lifespan Respite Care Program was authorized in 2009 when Congress appropriated $2.5 million. Funding was used to develop a National Lifespan Respite Resource Center in 2009. The Family Caregiver Alliance and the ARCH National Respite Network have started the Caregiver Programs and Lifespan Respite: Technical Assistant Centers to provide support and technical assistance to respite providers and caregiver organizations around the country. The Centers will develop tools for the Aging and Lifespan Respite Networks so that these networks can strengthen their respite care programs, increase their capacity to serve caregivers, and improve the quality of available respite care services. There are as many as 65.7 million Americans who are providing care to an adult or child with a chronic health condition (NAC/AARP, 2009). All of these caregivers can benefit from respite care services. According to the Lifespan Respite briefing for the Obama Administration (2008), respite services “. . . helps strengthens families, protects their health and well-being, and allows them to continue providing care at home” (ARCH National Respite Coalition: 2). Respite services are provided in a variety of modalities. Some services provide respite care workers who come to the home of the caregiver or care recipient. Others, such as adult day service programs, offer regular scheduled days and times that allow the caregiver to plan her or his day around this respite. There are also overnight respite programs that allow a caregiver and the caregiver’s family to take a vacation or have an extended period of time without the responsibility of care. Respite is provided by volunteers or professionals. In Oregon, under the first state Lifespan Respite

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Care Program established by law, approximately 3,000 families receive respite services on an annual basis. Oregon started its program in 1997. As this book goes to print, the Administration on Aging is reviewing proposals for additional states to receive funding to implement Lifespan Respite Care Programs. The newly funded states in 2010 will join the 12 states that received implementation funding in 2009.

DISCUSSION QUESTIONS 1. What are the most important things that families need to help them manage their caregiving responsibilities? 2. What might be the consequences for your life if you were called upon to be the primary caregiver for one of your parents or grandparents right now? 3. How could you, as a volunteer, help grandparents who are raising grandchildren? Do you know of any volunteer opportunities in your community that address this group of “silent saviors”?

REFERENCES AARP. (2007). Valuing the invaluable. Washington, DC: Author. Retrieved May 10, 2010, from http://assets.aarp.org/rgcenter/il/i13_caregiving.pdf Administration on Aging. (2010). FY 2008 U.S. Profile of OAA Programs. Report provided to authors by AoA on April 27, 2010. ARCH National Respite Coalition. (2008). Lifespan respite transition issue brief. Retrieved June 4, 2010. Cain, L. (1977). Evaluative research and nutrition programs for the elderly. In J. E. O’Brien (Ed.), Evaluative research on social programs for the elderly (pp. 32–48). Washington, DC: U.S. Government Printing Office. Council of Economic Advisors, Executive Office of the President. (2010). Work –life balance and the economics of workplace flexibility. Retreived June 10, 2010, from www.whitehouse.gov Generations United. (2007). Grandparents and other relatives raising children: Their inclusion in the National Family Caregiver Support Program Fact Sheet. Retreived May 5, 2010, from www.gu.org Generations United. (2010). Grandfacts: Data, interpretation, and implications for caregivers Fact Sheet. Retreived May 5, 2010. Link, G. (2003). The aging network implements the National Family Caregivers Support Program. Washington, DC: National Association of State Units on Aging. Retreived on June 1, 2010, from www.nasua.org

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National Alliance for Caregiving (NAC) and AARP. (2009). Caregiving in the US: A focused look at those caring for someone age 50 and older. Bethesda, MD: Author. Neal, M. G., Wagner, D. L., Bonn, K. J., & Niles-Yokum, K. (2008). Caring from a distance: Contemporary care issues. In A. Martin-Matthews & J. E. Phillips (Eds.), Aging and caring at the intersection of work and home life: Blurring the boundaries. New York, NY: Lawrence Erlbaum Associates. Select Committee on Aging. (1987). Exploding the myths: Caregiving in America (Committee Publication No. 99–611). Washington, DC: Government Printing Office. Simmons, T., & Dye, J. L. (2003). Grandparents living with Grandchildren: 2000, Census 2000 Brief. US Department of Commerce, US Census Bureau. Retreived May 1, 2010. US Department of Health and Human Services, Administration on Aging. (2004). The Older Americans Act National Family Caregiver Support Program (Title III-E and Title VI-C). Compassion in Action. Washington, DC: Author. Retrieved June 1, 2010. Wagner, D. L. (1997). Caring across the miles: Findings of a survey of long-distance caregivers. Washington, DC: The National Council on the Aging.

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Transportation INTRODUCTION Transportation programs can be designed to enable older persons to reach doctors’ offices and hospitals. They also can be more wide scale in their approach. As current Older American Act (OAA) regulations define transportation services, they include: transporting older persons to and from community facilities and resources for purposes of acquiring/receiving services, to participate in activities or attend events in order to reduce isolation and promote successful independent living. Service may be provided through projects specially designed for older persons or through the utilization of public transportation systems or other modes of transportation. (U.S. Administration on Aging, 2004)

Transportation services are a vital element in community-based aging services, including day care centers, senior centers, mental health centers, and nutritional and educational programs. Developing transportation programs to ensure that older persons can access programs and services is feasible in many communities. Developing such programs that are available at all times for older persons who want to reduce their isolation by meeting friends or going to a movie or concert is a much more difficult process. Most older Americans live in communities where there is inadequate public transit: 75% live in suburbs, and in these suburban areas, only 43% have any scheduled public transit within one-half mile of their homes (U.S. Senate Special Committee on Aging, 2003). As a result, older persons whose skills are seriously impaired continue to drive their own cars. The result is often tragic. Accident rates for older drivers are less than that for teenage drivers. However, when fatal accidents are compared according to driver age, drivers over the age of 75 account for the larger proportion of these 149

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accidents (Stav, 2008). The General Accounting Office (GAO) (2007) examined older drivers and reports that the growth of the older population will result in more older adults being exposed to crashes. As the number of older Americans continues to increase, their representation in the driving population will also increase. In 2003, people over the age of 65 accounted for 14% of all drivers. By 2030, older people will comprise 25% of all drivers (U.S. Senate Special Committee on Aging, 2003). Despite their increased representation among drivers, 21% of individuals over the age of 65 do not drive. The reasons they do not drive include health problems, concerns about their safety, lack of a car, and personal preference to use other forms of transportation. The net result of this inability or unwillingness to drive is that 50% of older people stay home some days because they lack any transportation. This problem is most severe among minority elderly, suburban residents, and older persons living in rural areas (Surface Transportation Policy Project, 2004). Various approaches to the transportation needs of the urban, suburban, and rural elderly are thus required. To place the present thrust of transportation programs in an appropriate framework, we need to examine the goals of these services and the factors that impinge on the realization of these goals.

OPTIONS Transportation systems can vary in their extensiveness, their frequency of operation, and their ability to meet the individualized interests of potential consumers. In the language of transportation planning, these systems can be “demand-responsive,” “need-responsive,” or “desire-responsive.” While demand-responsive systems respond to individuals’ calls for service, need-responsive systems attempt to service transportation requirements felt to be important to their maintenance of a satisfying life. The demands placed on transportation services by elderly individuals may be less than what they “need” for an independent, healthy lifestyle. Needresponsive systems are close to desire-responsive systems, and planners usually confine their analyses to these two groups. The optimal transportation system for the elderly and the handicapped would be need-responsive, increasing the options of these populations for interactions with a range of individuals and programs. In densely populated areas, an inexpensive, properly designed mass transit system may enable the older person to reach a variety of important

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destinations. In suburban and rural areas with low density and dispersed services, a system responsive to the older person’s needs is more difficult to implement.

MODELS Aggregate trips taken by individuals to different sites and the costs or subsidization that must be borne for each trip taken are major factors in choosing transportation models appropriate to a community. As transit authorities around the country have discovered, public transit systems cannot be expected to run at a profit if fares are to be kept at a reasonable level. The growing understanding that public transit of any form needs to be subsidized has slowed the development in many areas. Unfortunately, many transit authorities attempting to stop the rise of deficits have become involved in a cycle of raising fares, resulting in a lower number of riders and subsequent fare increases. With each fare increase, the differential between the costs of mass transit and driving decreases, and increasing numbers of individuals therefore turn to their automobiles for commuting and pleasure trips. Transportation systems of all kinds must face the issue of the maximum subsidies that the community will tolerate and optimal methods for financing these subsidies.

FORMS OF TRANSPORTATION FOR THE ELDERLY Mass Transit During the 1960s and 1970s, an effort was made to encourage the use of existing mass transit facilities by the elderly. Under the 1974 National Mass Transit Assistance Act, the Urban Mass Transit Administration was authorized to allot funds for capital and operating costs of mass transit systems. Communities attempting to qualify for these funds were required to institute programs for the elderly that reduced fares in nonpeak hours to no more than one-half of peak-hour fares. A number of major cities had already instituted this approach before the federal legislation was enacted. By 1974, 145 cities had already instituted half-fare programs (U.S. Department of Transportation, 1975). The positive effects of programs for elderly riders have been demonstrated. These include increased use of the mass transit systems by the

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elderly to attend social activities and programs and to obtain medical care. Unfortunately, available studies do not reveal the reasons why many elderly still refrain from using the transit system. The stress of the elderly concerning convenience and accessibility, rather than costs of transportation, may account for reduced ridership among older people, who may have to walk long distances to reach transit stops or take buses even to reach the subway. Having accomplished this task, they then must surmount obstacles posed by steps on buses or stairways in subway stations. The Urban Mass Transportation Act (UMTA) specified that elderly and handicapped persons have the same rights to utilize mass transportation facilities and services as do other individuals. In 1975, regulations were issued requiring recipients of UMTA funds to build their facilities in a manner that would not create physical barriers for the elderly and handicapped. Installation of elevators at all new subway stations has been one major outgrowth of this requirement. The physical barriers on buses are more difficult to overcome. In East Orange, New Jersey (Rinaldi, 1973), an escort service was provided during the early 1970s to help elderly individuals negotiate the steps of buses and other public transit barriers. In 1973, a negative report on this effort was issued. Despite the assistance made available by the escorts, the costs of this service were prohibitive. Costs were doubled, as fares were required for both the elderly person and the escort. The service was also not found to promote new trips by elderly individuals. Regulations issued by the Department of Transportation required all new buses purchased with UMTA funds after September 1979 to have boarding ramps or hydraulic lifts, floor heights no more than 22 inches off the ground, and an ability to “kneel” to 18 inches. The regulations were rescinded in 1981, and local communities were allowed to demonstrate that they had made reasonable efforts to meet the needs of the elderly and the handicapped. Under the Americans with Disabilities Act passed in 1990, all new buses ordered must be accessible to people with disabilities. In major cities such as San Francisco, all buses now can kneel to allow elderly and disabled individuals easy boarding.

New Transportation Systems Building public transportation systems is an extremely costly process, and these systems do not always provide the most direct route to a destination. In some cases, a bus trip to a medical center may require 50 minutes and a

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transfer of buses and cost $1.00. A taxicab ride to the same destination might take 10 minutes, cost $2.00, and travel door to door. The problems involved in creating new transportation systems for the elderly are more complex than reductions in fares on existing mass transit facilities. Critical examination of the potential of new systems is necessary because of the increasingly decentralized living patterns of Americans. The Federal Aid to Highways Act of 1973 emphasized the need to take the mobility needs of the rural elderly and handicapped into account in highway planning and improvements (U.S. Department of Transportation, 1976). Through a major grant program (Section 5310), the Federal Transit Administration now provides funding to states “for the purpose of assisting private nonprofit groups in meeting the transportation needs of the elderly and persons with disabilities when the transportation service provided is unavailable, insufficient, or inappropriate to meeting these needs” (Federal Transit Administration, 2004). In Fiscal 2003, $90 million was allocated under this program. The funds are divided among the states based on the size of their older and disabled populations. In FY 2004, 58% of the funds were used by nonprofit groups for vans and 38% for buses at least 30-feet long (Federal Transit Administration, 2005). Although the Section 5310 funds have been valuable in all states, one estimate is that $350 million a year is required to meet the current needs of transportation systems for older persons and disabled persons (U.S. Senate Special Committee on Aging, 2003). The Section 5310 funds are supplemented in many communities by OAA Title III funds and the purchase of care arrangements among individual social service agencies. Substantial amounts of Title III funds have been channeled into transportation programs, although the Administration on Aging (AoA) discourages the use of these monies for the purchase of vehicles. AoA officials fear that many agencies will not be able to afford the expenses of maintaining and operating these vehicles after using Title III funds to purchase them. The difficulties of meeting operating expenses is a common theme among organizations running extensive transportation efforts and facing mounting repair costs for heavily used vehicles. The costs of repairs plus high gasoline prices continue to make transportation an expensive service. In most areas where there are ride programs, they are limited to medical purposes and not readily available for shopping or running other errands. Fixed-route, fixed-schedule services are available in a number of cities. These routes are most effective where large numbers of eligible

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riders live in close proximity. In Arlington, Virginia, 970 seniors live in four apartment complexes. As a result of this density, the local Area Agencies on Aging (AAA) has been successful in funding a local provider to implement a “Senior Loop.” Using 16 passenger vans, the loop makes a continuous circuit during the middle of the day to transport residents to grocery stores (U.S. Senate Special Committee on Aging, 2003). In Jacksonville, Florida, the AAA has used Title III funds to purchase trips for older persons from providers. The providers include taxis, volunteers, local transit systems, and nonprofit groups. The rides must be reserved at least 24 hours in advance. In 2002, despite all of their efforts, the Jacksonville AAA estimated that for every individual served through this program, one had to wait for service (U.S. Senate Special Committee on Aging, 2003). Many older people need a more flexible system. In Austin, Texas, the Reserve-A-Ride system charges $1 a ride for transportation to doctors, dentists, lawyers, banks, pharmacies, hair appointments, hospital visitations, volunteer work sites, and social engagements. The older person must call at least 24 hours in advance of the request date, and riders are scheduled on a first-come, first-served basis.

RIDERSHIP PROBLEMS Encouraging frequent utilization of these transportation services is important in reducing the average cost per ride. Faced with the problems of financing expensive vans and then obtaining sufficient numbers of riders to keep subsidization at a reasonable level, it would appear that taxicab usage would be more economical and more convenient. Taxicab-based systems might also reduce any negative feelings that elderly residents have about riding special buses and would make use of the existing dispatching systems. In the early 1970s, a shared taxicab service was implemented in Arlington, Virginia. By 1975, this system had been abandoned on the basis of excessive costs (Kast, 1975). Arlington currently utilizes the STARAssisted Transportation System. Selected taxicab drivers are trained to serve as escorts for older persons. They help these individuals from their house to the taxi and then to the door at their destination. Because of its cost, this Assisted Transportation System is only available for seniors going to doctors or other health-care settings (U.S. Senate Special Committee on Aging, 2003). Aside from cost problems, many cab drivers may not want to pick up elderly passengers who live in poor inner-city or rural

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areas. The flexibility and convenience of the taxicab has thus been difficult to match with a program that is economical and efficient. “User side” subsidies do, however, appear to have strong support among older persons. Through its “Call-N-Ride” program, Montgomery County, Maryland, provides instituted taxi vouchers that low-income individuals over the age of 67 can purchase. Depending on the length of the ride, these vouchers can substantially reduce the cost (Montgomery County, Maryland, 2010). In addition, there is a “Ride-On” network of buses that connect Montgomery County neighborhoods and, if the elder lives close to a Ride-On, provides an alternative for a wide variety of destinations. Elders pay a reduced fee to use the system. And, finally, Montgomery County works with MetroAccess, a great Washington, DC area system for persons with disabilities and elders. Nonetheless, both aging network professionals and older residents continually identify transportation as the number one need in the community.

COORDINATION OF PROGRAMS Many of the transportation programs for special groups are mandated under federal legislation. Medicaid legislation specifies that each state plan must include provisions for assuring the transportation of Medicaid recipients to and from medical services. This provision can be satisfied by reimbursement of recipients for their transportation costs. Title III of the OAA requires the provision of transportation for clients to and from nutrition sites if transportation is otherwise unavailable. An indication of the proliferation of transportation programs was provided by a study that found 62 federal programs funding transportation efforts (U.S. General Accounting Office, 2003). Of these 62 programs, 23 were in the Department of Health and Human services, 15 were in the Department of Labor, 8 were in the Department of Education, and 6 were in the Department of Transportation. The remaining 10 were scattered in a number of other agencies. In 2005, United We Ride found 37 federal programs that reimbursed consumers in different categories for their transportation expenses and 26 programs that funded the purchase and operation of vehicles or the contracting of transportation services with established providers. Coordination of individual agencies’ efforts in order to pool resources for capital outlays and operating costs is one step that promises to reduce the constantly increasing financial burdens of these programs. In California, the local Transportation District provides 64% of the expenses

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for transportation programs in Marin County. The Transportation District also coordinates transportation programs for senior citizens, a medical transportation program, and a system of transportation for service and charitable organizations. The state of Georgia has appointed a Regional Transportation Coordinator for each of the state’s 13 regions (U.S. Senate Special Committee on Aging, 2003). At a more local level, Cleveland acted in the 1990s to create a more efficient transportation system for older people by consolidating four providers into one system that offers both fixed route and demand services (Three Ohio AAA’s, 1990). In Detroit, the Commission on Jewish Eldercare Service has developed a coordinated system of transportation for seven different Jewish service agencies (U.S. Senate Special Committee on Aging, 2003). Innovation The Beverly Foundation began their STAR Senior Transportation Service Award program in 2000 with the AAA Foundation for Traffic Safety. The annual awards program includes a financial award in the amount of $5,000 – $10,000 per project, as well as access to a library of information for recipients and assistance with promotion. Program reviews and case studies are available for many winners of the STAR Awards for Excellence. The STAR awards are in line with their foundation mission: “At the Beverly Foundation, new ideas and options are fostered to enhance transportation and mobility for today’s and tomorrow’s older population.” To date (2008), the Beverly Foundation has awarded: B B

29 STAR Awards for Excellence 20 Awards for Special Recognition of community-based programs that provide transport services for seniors

2009 STAR Awards: B B B B B B B

Cheer, Inc. Sussex County Mobility (DE) St. Johns County Council on Aging, Inc. (FL) Jewish Family Service of Los Angeles (CA) Neighbor Ride, Inc. (MD) Jewish Family Service of San Diego (CA) Partners in Prime (HO) Sheridan MiniBus (WY)

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VNA Community Service (IL) AAA of Western Michigan (MI) A Helping Hand (NC) Special Transit (CO) Weber Human Services (UT) Jewish Family Services of Minneapolis (MN) Senior Helpline Services (CA) City of Tamarac (FL) RSVP of Dane County (WI) Mountain Empire Older Citizens, Inc. (VA) Western Community Action, Inc. (MN) NA Hoaloah-MIVC (HI) Forth in Action of McHenry County (IL) Portales Senior Center (NM)

In addition to providing incentives to organizations to tackle tough issues related to transportation for seniors, the Beverly Foundation “undertakes research, education and assistance to encourage and facilitate mobility and transport of older adults.” An example of ongoing research are the surveys they conduct regularly. STAR Search Surveys have gathered information on 800+ Supplemental Transportation Programs (STPs) for seniors. The survey database includes the following information about each STP: B B B B B

Location Organization Services Finances Risk management practices

National Center on Senior Transportation During the 2005 White House Conference on Aging, delegates identified transportation as an important priority—third to reauthorizing the OAA and long-term care issues. This idea became a reality when the National Center on Senior Transportation opened in August, 2006. The mission of the organization, which is run by Easter Seals and the National Area Agencies on Aging Association (N4A), is to increase the transportation options available for older adults. Other members of the Center working with N4A and Easter Seals are National Association of State Units on

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Aging (NASUA), Community Transportation Association of America (CTAA), the American Society on Aging (ASA), and the Beverly Foundation. Funding for the center comes from the U.S. Department of Transportation, Federal Transit Administration. The Center provides technical assistance and training and a library of resources for the aging network. Center funding has also gone to community-based demonstration programs to test models of transit for older adults.

The Old Driver As mentioned earlier in this chapter, older drivers have higher rates of fatal accidents than other age groups. Negotiating an intersection is often a problem for older drivers, with 37% of traffic-related fatalities occurring at intersections. With both the elder population increasing and the number of persons with Alzheimer’s disease or related dementia increasing, it is imperative that public policy develop both effective approaches to driver license renewal and to older driver training. The Federal Highway Administration has developed recommendations for the design and operation of roadways to ensure they are safe for older drivers (GAO, 2007). However, only two states have undertaken older driver safety projects. The Automobile Association of America and AARP have developed safe driver programs for older adults. The Drive Wise program was developed by neurologists and other clinicians who were being asked to make determinations about the safety of an older person with dementia to continue driving. Over the 12 years of its existence, Drive Wise has provided services to nearly 400 elders who were referred to the program by Motor Vehicle Departments, physicians, and the aging network (O’Connor, Kapust, & Hollis, 2008). The GAO report (2007) found that over half of the states have implemented programs to assess older drivers, which are more strict than those for younger drivers. The programs include frequent renewals, vision screening, in-person renewals, and mandatory driving test. However, these assessments do not always include cognitive or physical assessments. Nine states required physicians to report a diagnosis of Alzheimer’s disease, epilepsy, and other conditions that could render the elder unconscious. The GAO points out that while these states require this reporting, they all do not guarantee privacy, which is a barrier to some physicians who are concerned about law suits or loss of a patient to reporting. All 50 states will accept reports of concerns about an elder’s

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ability to drive. Law enforcement officers are the most likely to submit those reports, and medical professionals and family and friends also report concerns to the Motor Vehicle Departments. A recent incident in Maryland illustrates the risks of driving after a diagnosis of dementia. In one incident, an older husband who reportedly had early-stage Alzheimer’s disease, landed at the Thurgood Marshall Airport (previously BWI) with his wife for a visit to their children. Leaving her at the baggage claim area, he went to pick up the rental car. After picking up the car he apparently became lost and ended up in a roadside rest area in Virginia, not sure where he was or why he was there. The family spent two days looking for him before he was located. Our expert, Professor Silverstein, shares her thoughts on drivers with cognitive impairment and the importance of transportation for older Americans.

EXPERT’S CORNER Nina Silverstein, PhD University of MA, Boston Boston, MA How well the aging network functions is dependent largely on the ability of older adults and the network of programs and services to connect with each other. Transportation is a major factor in whether older adults can access the network and, in turn, whether the network can reach the older adult. Gerontologists should be concerned with the full range of community mobility from the transition of driver to passenger; and work in their communities to assure the full range of transportation options, including supportive transportation, when driving fitness is impaired. Demographic trends indicate that the number of Americans 60 years of age and older will increase dramatically, exceeding 20% of the population, or almost 90 million people, by 2050 (U.S. Census Bureau, 2006). Given current land-use patterns and the limited availability of community mobility options, most of this growing expanse of older adults will be lifelong drivers who rely on the independence and convenience of the private automobile. In fact, 70% of Americans aged 75 and older live in suburbs and small towns designed for car

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use (Staplin & Lococco, 2003). There were 19 million older licensed drivers in 2001. In contrast, more than 600,000 persons aged 70 and older stop driving each year. This is a serious concern for social isolation in that of all older nondrivers, 54% do not leave their home on a given day, while only 17% of the drivers stay at home (Bailey, 2004). Moreover, research suggests that life expectancy exceeds driving expectancy after age 70 by about 6 years for men and 10 years for women (Foley, Heimovitz, Guralnik, & Brock, 2002). Yet, few people plan for a time when driving is no longer possible. With advanced age comes an increased prevalence of conditions such as arthritis, macular degeneration, and dementia, which may compromise critical driving skills and safety. By 2030, drivers aged 65+ are projected to comprise 25% of all fatal crash involvements (Hu, Jones, Reuscher, Schmoyer, & Truett, 2000) accounting for about 40% of the expected increase in all crash involvements (Lyman Lyman, Ferguson, Braver, & Williams, 2002). Of particular concern to driving performance are disorders characterized by deterioration in cognition, such as Alzheimer’s disease and other dementing illnesses (Adler & Silverstein, 2008). Persons with dementia will need to stop at some point in the disease process, and monitoring critical driving skills through specialized driving assessment such as that provided by an occupational therapist/driver rehab specialist is critical. One policy concern, however, is that the specialized assessments are not currently reimbursable through private insurance or through Medicare and are a costly, but necessary, out-of-pocket expense. Others are suggesting the establishment of personal transportation savings accounts to supplement mobility costs in later life. The issue is not simply a matter of taking away the keys. The issue is assuring that individuals may continue to engage in daily living when critical driving skills are impaired. To achieve that goal, community mobility options are needed that are Available, Accessible, Adaptable, Affordable, and Acceptable (Kerschner & Aizenberg, 1999). As more communities include elements of Livable Communities, Smart Growth, Universal Design, and Complete Streets, we see a glimmer of what can be achieved to assure safe mobility throughout the lifespan. We as a society are not there yet, but effective strategies do exist to help us plan for the road ahead.

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DISCUSSION QUESTION Currently, states differ dramatically in their licensing and renewal policies related to impaired drivers. Some states have age-based testing. Some states have mandatory reporting. Some states provide immunity to physicians who report patients with medical conditions that may have an impact on critical driving skills. Stakeholders vary in their opinions as well. Review the licensing and renewal policies in your state. What recommendations would you make if asked by your state legislature? FUTURE TRENDS The transportation needs of older persons will continue to increase as the proportion of older persons living in suburban communities also increases. The emphasis on outpatient treatment for many health problems means that older persons will need to be able to reach their health providers on a regular basis. Many communities will attempt to provide fixed-route transportation systems, but a more common model will be the type of system now in place in Arlington, Virginia. The federal government is attempting to assist transportation programs through both subsidization of vouchers and capital assistance funds that allow organizations to buy vehicles. The Federal Transit Administration is placing a special emphasis on support for the development of special transit programs in rural areas. In these communities, 36% of the riders are elderly. Even with this support, the provision of adequate transportation will remain a major issue for providers of services for older persons. The expenses associated with this service will not decrease, although the spiral in insurance premiums noted in the late 1970s has largely abated. Transportation will continue to consume a major portion of the budgets of service agencies, even with proper coordination, and program planners must be aware of the costs and difficulties of providing adequate transportation. For the elderly, we can expect transportation programs to remain demand-responsive rather than need-responsive. Although flexible schedules and route services may be officially available, priorities of shopping and medical trips may consume most of the van and bus capacity available in many areas. It is thus doubtful that any new public transportation system will be able to open up major new opportunities for elderly individuals to

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expand their range of activities. The realistic goals of transportation services should be to enable (1) formerly isolated elderly to reach the variety of agencies and programs now available, (2) elderly individuals to obtain the medical and mental health care they require, and (3) the elderly to undertake the necessary shopping trips to avoid doing without important goods. Visiting or attendance at cultural events requires a flexible and individualized service not within the resources of transportation systems currently in operation. The rural elderly and the increasing numbers of frail individuals over the age of 85 are two groups to whom specialized transportation services will need to be directed. The goals mentioned are major, and their fulfillment will not be a simple task. Their attainment promises an improvement in the isolating conditions under which many elderly and handicapped now live, but it will remain an expensive effort. Subsidization of transportation services will always be necessary. Providing adequate transportation services may prove to be a major test of the general public’s commitment to maintaining the network of services needed by older individuals.

REFERENCES Adler, G., & Silverstein, N. M. (2008). At risk drivers with Alzheimer’s disease: Recognition, response, and referral. Traffic Injury Prevention, 9, 299–303. Bailey, L. (2004). Aging Americans: Stranded without options. Washington, DC: Surface Transportation Policy Project. Federal Transit Administration. (2004). Transportation for elderly persons and persons with disabilities. Retrieved August 11, 2004, from http://www.fta. dot/grant_programs/specific_grant_programs/elderly_disabilities Federal Transit Administration. (2005). FY 2004 purchases by type of motor vehicle and program. Retrieved November 28, 2005, from http://www.fta.dot.gov/files/ t-10-ll.xls Foley, D. J., Heimovitz, H. K., Guralnik, J. M., & Brock, D. B. (2002). Driving life expectancy of persons age 70 years and older in the United States. American Journal of Public Health, 92, 1284 –1289. GAO. (2007). Older driver safety: Knowledge sharing should help states prepare for increase in older driver population. Washington, DC: U.S. Government Printing Office. Hu, P. S., Jones, D. W., Reuscher, T., Schmoyer, R. S., Jr., & Truett, L. F. (2000). Projecting fatalities in crashes involving older drivers, 2000–2025. Oak Ridge, Tennessee: Oak Ridge Institute for Science and Education, ORNL-6963.

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Kast, S. (1975, January 2). Arlington elderly about to lose those free rides. Washington Star-News, p. B-2. Kerschner, H., & Aizenberg, R. (1999). Transportation in an Aging Society. Focus Group Project. Retrieved May 2, 2010, from http://www.beverlyfoundation. org/library/givingupthekeys/transportation_in_an_aging_society.pdf Lyman, S., Ferguson, S. A., Braver, E. R., & Williams, A. F. (2002). Older driver involvement in police reported crashes and fatal crashes: Trends and projections. Injury Prevention, 8, 116 –120. Retrieved from www.seniortransportation. easterseals.com Montgomery County, Maryland. (2004). Call ‘n Ride. Retrieved August 24, 2004, from http://www.montogerycountymd.gov/APPS/DPTW/callnrideNEW/ default.asp O’Connor, M., Kapust, L., & Hollis, A. (2008). DriveWise: An interdisciplinary hospital based driving assessment program. Gerontology and Geriatrics Education, 29(4), 351 –362. Rinaldi, A. (1973). Aid to senior citizens’ mobility in East Orange, New Jersey: An escort service. Millburn, NJ: National Council of Jewish Women. Staplin, L., & Lococco, K. (2003). Summary of Medical Advisory Board Practices in the United States. Task Report Prepared Under NHTSA Contract N., DTNH2202-P-05111. Stav, W. (2008). Occupational therapy and older drivers: Research, education and practice. Gerontology & Geriatrics Education, 294, 336– 350. Surface Transportation Policy Project. (2004). Aging Americans: Stranded without options. Retrieved July 28, 2004, from http://www.transact.org/library/ reports,html/semors/exec_sum.asp U.S. Administration on Aging. (2004). Retrieved from http://www.wiaaa.org/ oaa_services/transportation_oaaservices.pdf U.S. Census Bureau. Facts for Features. Older Americans Month: May 2006. Retrieved May 2, 2010, from http://www.census.gov/PressRelease/www/ releases/archives/facts_for_features_special_editions/006537.html U.S. Department of Transportation. (1975). Transportation for the elderly: The state of the art. Washington, DC: U.S. Government Printing Office. U.S. Department of Transportation. (1976). Rural passenger transportation: Technology sharing. Cambridge, MA: Transportation Systems Center. U.S. General Accounting Office. (2003). Transportation for disadvantaged populations. Retrieved August 24, 2004, from http://www.gao.gov.new/items/d03697.pdf U.S. Senate Special Committee on Aging. (2003). Keeping America’s seniors moving: Examining ways to improve senior transportation, July 21. Washington, DC: U.S. Government Printing Office.

11

Protecting the Rights and Well-Being of Older Americans Elder Justice Activities

INTRODUCTION In this chapter we will cover a broad array of topics related to the protection of the rights of older adults. The Older Americans Act (OAA), as described in Chapter 1 of this book, begins with a list of objectives framed as the “rights” of older adults. Today, 50 years after the passage of the OAA, these objectives have remained elusive for many older Americans. Elders are victims of scams, fraud, abuse, and exploitation on an alarmingly regular basis. Vulnerable, frail elders are often “easy targets” for unsavory and exploitative activities. And, many older adults do not have adequate information to make informed decisions about guardianship, living wills, housing contracts, managing home health-care arrangements, or housing modification contracts. The extent to which the protection of the rights of this population is still a problem is evidenced by two bills proposed in Congress—one in the House (H.R 1342) and one in the Senate (Senate Resolution 553)— calling for the passage of the “Seniors Bill of Rights” (Rep. Schakowsky and Matsui). The Senate resolution proposed by Sen. Stabenow supports that of the House. In the OAA, Title VII was modified in 1992 to create a unified Title dedicated to the protection of the rights of older Americans and to carry out programs and services that would prevent elder abuse, neglect, and exploitation. This year, the Elder Justice Act (EJA) was signed into law as part of the Patient Protection and Affordable Care Act. This is the first comprehensive national legislation addressing elder abuse and when 165

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funded, it will dramatically increase the protections available to older Americans. We will begin the discussion of protections for older Americans with an overview of elder abuse. The next section will provide an overview of the key federal activities related to Title VII and related programs. We conclude the chapter with a discussion of elder law, the key issues, and the challenges facing the professionals who protect the rights of elders, one elder at a time.

ELDER ABUSE Elder abuse includes physical, emotional, and sexual abuse; exploitation, neglect, and abandonment; and self-neglect. Prevalence estimates suggest that between 1 and 2 million older Americans experience some form of abuse (NCEA, 2005). However, research suggests that the majority of elder abuse cases go unreported. In the 2004 Survey of State Adult Protective Services (APS), the majority of cases reported to APS (89%) occurred in the home. Adult children were most likely to be the perpetrators of abuse; older women were most likely to be the victims. Fisher and Regan (2006) conducted a community-based survey to examine the extent to which older women had been involved in abuse situations. They found that nearly half (47%) had experienced abuse since they were 55 years of age and many had experienced repeated abuse. The study found that those who had experienced abuse, regardless of the type of abuse, reported more health problems than other women. Like domestic violence, elder abuse is often about control and power relationships. Whether it is an adult child or grandchild or a spouse, abuse is often correlated with the dependence of the victim. In an issue brief prepared for the aging network by the National Association of State Units on Aging (NASUA) the authors encourage aging network professionals to support the older victim by any means possible and not be concerned about whether they are a victim of domestic violence of elder abuse. Domestic violence organizations are available to support an older abuse victim and . . . “efforts should be made to maximize the capacity of both systems by partnering to meet older victim’s unique needs” (Aravanis, 2006, p. 2). Elder abuse is also not necessarily a result of a stressful family caregiving situation. Most research suggests that caregivers who abuse the care recipient have poor emotional or psychological coping skills and/or alcohol or drug use problems. Abandonment, another form of abuse, is sometimes a result of stressful caregiving situations. “Granny dumping”

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has received media attention when an elder is left sitting in an airport, bus station, or mall with their luggage. There is no evidence that this is a common form of abuse or that the incidence of this form of abuse is increasing. According to the 2004 survey of Adult Protective Services, self-neglect is the most commonly reported “abuse” with caregiver neglect the second most common. Self-neglect is a complicated situation. Older adults who are reported to APS for self-neglect are 50% more likely to die within three years than those reported for other forms of abuse. The primary symptoms of selfneglect are poor hygiene, living alone, hoarding, and “domestic squalor” (Poythress, Burnett, Naik, Pickens, & Dyer, 2006). Financial abuse is a growing form of abuse and costs older Americans an estimated $2.6 billion a year (MetLife, 2009). A perpetrator of financial abuse can be a stranger, a trusted friend or advisor, or a family member. Hounsel (2009) points out that telemarketers, predatory lenders, and home improvement contractors often exploit the older adult. In one common scam described as the “senior seminar,” predators offer older adults expert advice on financial planning with an alternative agenda in mind. These seminars may occur at senior centers or other places with older adults congregate. Another example of elder abuse closer to home is the abuse of durable power of attorney (Stiegel, 2008). This is when an individual becomes an agent under the durable power of the attorney process and exploits their status as the agent of the elder by going against the wishes of the elder for their own personal gain. Elder abuse is a sad fact of life for too many older Americans with negative outcomes, regardless of the type of abuse involved. Often the signs of elder abuse are not obvious, and since the majority of abuse occurs in the privacy of the home, may not be noticed by people outside the family. Training health-care providers and personal care attendants to look for the signs of elder abuse is an important first step in addressing the problems associated with elder abuse. Making sure that the intervention system is effective and easily accessible is of equal importance, as is encouraging people to report suspicious activities when they become aware of them. OLDER AMERICANS ACT INITIATIVES Elder Abuse Prevention The prevention of elder abuse, neglect, and exploitation program (Title VII, Section 721) was started in 1987. The Administration on Aging (AoA) provides the leadership on a federal level to plan and carry out programs

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and research in the area of elder abuse and prevention. The programs support training of health-care providers, law enforcement, and other first responders on the recognition and appropriate response to elder abuse, as well as public awareness of the problems associated with elder abuse. Funds are allocated to states on a per capita (of 60+ population) basis and can be used at the state or local level to address training and education needs, as well as to support coalitions and providers who are working on elder abuse. The AoA website describes an array of programs and products that have been developed around the country as a result of Title VII funding, including “Visor Cards” for law enforcement that contain information about elder abuse and resources (Kentucky) and the training of nonprofessional people who have contact with elders, such as hairdressers, on how to identify and report elder abuse (New York). Funding for Title VII programs was $5.06 million in 2008. The National Center on Elder Abuse (NCEA) is authorized under Title II and is a national resource center focused on the prevention of elder abuse. The Center is conducting a public awareness campaign in conjunction with the University of Delaware Center for Community Research and Service (CANE-UD) that will involve broadcast messages; voices of seniors speaking about elder abuse, neglect, exploitation, and ageism; a public awareness inventory to provide materials for local and state organizations to use in their public awareness campaigns; and a “youth movement” to involve young people in elder abuse prevention (NCEA, 2010). The Center is also involved in supporting “Elder Justice Local Development Networks” and providing training and technical assistance to the aging network. Finally, the National Adult Protective Service Association (NAPSA) will partner with the Center to assess the training needs within criminal justice, health care, the aging network, victim’s services, and the financial industry and to expand the training materials available to address these needs. The National Center on Elder Abuse received $796,832 in 2008 for its activities.

The Ombudsman Program The Long-Term Care Ombudsman program is a national program that is authorized by the OAA. Ombudsmen provide advocacy services for residents of nursing homes and other residential settings. Each state in the country has a State Ombudsman who is supported by local ombudsmen and volunteers. This ombudsmen network is supported by the

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National Long-Term Care Ombudsman Resource Center that is operated by the National Consumer’s Voice for Quality Long-Term Care (formerly NCCNHR) that provides services in partnership with NASUA. The Resource Center provides print material, training, and technical assistance to all of the state and local ombudsmen. According to the data collected by AoA, there were 9,000 certified ombudsmen in 2008 and more than 1,300 paid ombudsmen operating around the country. These ombudsmen investigated more than 271,000 complaints resolving completely or in part 77% of these complaints. Ombudsmen also provided information about longterm care to 327,000 people in 2008 and provided training in facilities about residents’ rights and consultations to facility managers, staff, resident councils, and family councils. The ombudsmen program received $15.6 million in federal funding from Title VII in 2008. The total program support from Title III, Title VII, and other federal, state, and local services was $86.4 million for the ombudsmen program. Legal Assistance Legal assistance is supported by OAA as a way to empower older Americans to remain independent and autonomous. Three Titles of the OAA support this type of assistance. Title III-B provides funds for attorneys to help those with social and economic needs. These attorneys provide consultation and assistance on income security, health care, long-term care, nutrition, housing, utilities, protective services, guardianship, abuse, neglect, and exploitation. During 2008, the legal assistance program received $24.8 million in funding (Table 11.1). TABLE 11.1 OAA Programs for the Protection of Elders and Elder Rights—2008 Title

Program

Funding

VII

Elder Abuse Prevention

$5.06 million

II

Nat. Center on Elder Abuse (NCEA)

$796,832

VII

Ombudsmen Program

$15.6 milliona

III

Legal Assistance Program

$24.8 million

IV

National Legal Resource Center

$830,750

IV

Statewide Legal Assistance

$1.4 million

VII

Legal Assistance Developer Program

a

n/a

Total funding for ombudsmen from Titles VII, III, other federal programs, state, and local sources $86.4 million. Source: www.aoa.gov.

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Title IV provides funds for a National Legal Resource Center that includes case consultation through the National Senior Citizens Law Center for professionals and advocates, and training for professionals and advocates in the area of legal and elder rights is provided by the National Consumer Law Center. The American Bar Association, Commission on Law on Aging provides information and resources to professionals and advocates working in the aging network and the legal services fields. And two organizations—the Center for Social Gerontology (TCSG) and the Center for Elder Rights Advocacy (CERA) provide technical assistance in service systems and legal helplines. In 2008, $730,750 was provided to support the national legal assistance and elder rights projects and $100,000 funded legal helplines and elder rights projects. Title IV also provides discretionary grants to help states develop senior legal helplines and integrate them into the larger legal service system. Twenty-four states have been funded under the Model Approaches to Statewide Legal Assistance Systems. In 2008, funding for this initiative was $1.4 million. And, finally, Title VII funds are used for the Legal Assistance Developer program. This program requires every state to have a legal assistance developer who is responsible for developing and coordinating the state’s legal services and elder rights programs. Each state is required to develop a plan to address elder rights and ways in which the legal assistance developer can work to improve access to legal services for those with the most social and economic needs.

THE ELDER JUSTICE ACT The EJA was passed as part of the Patient Protection and Affordable Care Act. The EJA is the most comprehensive federal initiative to address elder abuse ever passed. However, advocates and partners in the Elder Justice Coalition point out that some key elements were not included in the bill, such as the justice provisions that would support criminal and justices systems’ involvement in elder abuse issues. Bob Blancato, the National coordinator of the Elder Justice Coalition that championed the EJA, prepared a supplement to his testimony on hearings conducted on February 25th after the bill was passed in March. In these remarks, he urges that the 2011 reauthorization of the OAA include strengthening of Title VII and the integration of the Elder Justice goals into other

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Titles and the programs they support. Stiegel (2010) also argues that advocates and members of the Elder Justice Coalition need to focus their efforts to gain funding for the Act and work toward passage of the Elder Abuse Victims Act of 2009. This act would link justice-related activities to support the EJA, including the creation of a Center for the Prosecution of Elder Abuse, Neglect, and Exploitation to advise prosecutors and courts. Provisions of the EJA include the development of an Elder Justice Coordinating Council to make recommendations to the Secretary of HHS within two years. There would also be $400 million of dedicated funding for Adult Protective Services, money to set up Elder Abuse, Neglect, and Exploitation Forensic Centers and additional funding for the Ombudsman Program and training programs for Ombudsmen activities.

ELDER LAW Elder Law is a specialty law practice that has been growing as the aging population is expanding. Elder Law attorneys help older adults and their families with wills, estate planning, and legal mechanisms to protect the wishes of the elder if she or he is unable to do so. A durable power of attorney is a tool that allows the elder to identify an agent who can make decisions on their behalf. The agent has a legal responsibility to act as a “fiduciary”—to make decisions that are in the best interests of the elder and that represent what the elder would have done before they were unable to make decisions. Stiegel (2008) reports that the durable power of attorney is often referred to as a “license to steal” because of a lack of oversight by a third party or a court. Other legal issues commonly managed by elder law attorneys include suits regarding eligibility for public benefits, age discrimination, guardianship, and housing issues. For example, negotiating a reverse mortgage might require the advice of an elder law attorney who has in-depth knowledge about these types of mortgages. Similarly, an elder law attorney can be consulted to review contracts with continuing care retirement communities or other life-care arrangements. Some elder law attorneys specialize in planning for long-term care and can help with health-care decisions and special needs planning. And finally, elder law attorneys can advise and assist in family issues, such as setting up funds for grandchildren or securing legal rights when

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a grandparent is called upon to raise their grandchildren. Selecting a qualified elder law attorney is important. State bar associations and the American Bar Associations have information on the practice of elder law. We conclude this chapter with comments from Jason Frank, Esq. an elder law attorney and our expert for this topic.

EXPERT’S CORNER Jason Frank, Esq. Frank, Franck & Scherr Lutherville, MD Elder Law attorneys face a number of challenging issues in their practice now and in the future. The root cause of these challenging issues is often the progressively more diminished capacity of their clients. While Elder Law attorneys must always attempt to zealously represent their clients to the best of their abilities (Maryland Rules of Professional Conduct Section 1.14), clients’ diminished capacity creates challenges for the practice of Elder Law in a myriad of ways. The most prominent of these challenges include: (1) managing assets and income for those who cannot manage their own; (2) making medical decisions, especially end of life and life sustaining treatment issues for those who cannot make these decisions on their own; (3) preventing and addressing elder abuse, particularly neglect, self-neglect, and financial exploitation, often by close family members; (4) preventing premature institutionalization by providing home and community-based long-term support and services (LTSS); and (5) paying for LTSS. This last issue is perhaps the most pressing. How do we create a system that can fund the high cost of LTSS? LTSS is extremely expensive and the individual autonomy of the elderly and disabled are often threatened, as they are likely not able to afford the long-term care in the setting they desire. Although there is a desire to maximize an individual’s autonomy, this goal is often at odds with the considerations of how to fund LTSS. Insisting on spending the least amount of money and mandatory managed care can easily violate the client’s desire to maximize autonomy.

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DISCUSSION QUESTIONS 1. Where does the right to make poor personal choices end and the state’s right to intervene begin? For example, does a 75-year old alcoholic have the right to drink himself to death? Does your answer differ if he: a. Has a 72-year old demented wife who cares for him? b. Has a 50-year old disabled son living with him? 2. How might we increase the engagement of more citizens in the issues of elder abuse so that they understand the problem and are willing to report it?

EXPERT CORNER Lisa Nerenberg MSW, MPH Current and Future Issues and Challenges in Elder Abuse Prevention Elder abuse ranges from neglect by family caregivers, to exploitation by con artists, to domestic violence. The causes are as diverse as the types, and include greed, abusers’ mental health problems, lack of support for family caregivers, a severe shortage of affordable paid caregivers, and dysfunctional relationships between victims and abusers. Recent retrenchments in social services have heightened the risk of all forms of abuse and neglect by eliminating services that elders depend on to remain independent, increasing isolation, and creating greater demands on family caregivers. These cuts have come at a time when increasingly frail individuals are living in the community as a result of the Supreme Court’s Olmstead decision, which affirmed that community-based care (as opposed to institutional) was a right protected under the Americans with Disabilities Act. The aging of baby boomers will place further demands on an already overstretched system. Preventing abuse therefore requires strengthening the long-term care safety net and building in added safeguards and protections. This includes expanding the long-term care workforce, creating better mechanisms for keeping out dangerous and unscrupulous workers, and ensuring that professionals and the public recognize the red flags for abuse and report it. We also need to ensure that our justice system

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is accessible to elders, and that legal professionals have the tools they need, including training, laws that acknowledge age-related vulnerabilities, “elder friendly” courts, and forensics research and expertise. Also needed are a wide array of direct services, including daily money management for those who can no longer manage their finances, counseling and support groups to help victims overcome the shame and ambivalence that discourages many from coming forward or accepting help, restraining orders and shelters, and legal aid to recover misappropriated money or property. Providing all of these services requires multidisciplinary collaboration and coordination. And finally, research is needed to guide our work. Specifically, we need studies to help us understand how subtle cognitive impairments heighten vulnerability, forensics studies to differentiate abuse from age-related conditions or accidental injuries, and demonstration projects with rigorous evaluations to guide service development. Many victims refuse help as a result of shame, denial, and fear. Others are unable to understand or appreciate their circumstances. Clearly, we need to better understand these barriers and develop strategies to overcome them. But ultimately, when victims refuse help, those working with them face the fundamental challenge of balancing elders’ personal freedom with society’s obligation to protect its vulnerable members.

CRITICAL THINKING QUESTION 1. Ensuring that elders are safe in their communities requires vigilance on the part of professionals and the public alike. What safeguards can you promote in your work or home setting?

REFERENCES Administration on Aging. (2010). FY 2008 U.S. profile of OAA programs. Retrieved from http://www.aoa.gov Aravanis, S. (February, 2006). Late life domestic violence: What the aging network needs to know. National Center on Elder Abuse Issue Brief. National Center on Elder Abuse. Retrieved May 10, 2010, from www.aoa.gov

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Fisher, B., & Regan, S. (2006). The extent and frequency of abuse in the lives of older women and their relationship with health outcomes. The Gerontologist, 46(2), 200 –209. Hounsel, C. (2009). Protecting your mother from financial fraud and abuse. In Elder Abuse: A Women’s Issue. OWL Mother’s Day Report. Washington, DC: Author. MetLife Mature Market Institute. (2009). Broker trust: Elders, family and finances. Westport, CT: Author. National Center on Elder Abuse. (2005). Fact sheet: Elder abuse prevalence and incidence. Retrieved from www.ncea.org National Center on Elder Abuse. (2006). Fact sheet: Abuse of adults aged 60+ 2004 Survey of Adult Protective Services. Retrieved from www.ncea.org Poythress, E., Burnett, J., Naik, A., Pickens, S., & Dyer, C. (2006). Severe self-neglect: An epidemiological and historical perspective. Journal of Elder Abuse & Neglect, 18(4), 5 –12. Stiegel, L. (2008). Durable power of attorney abuse. A National Center on Elder Abuse Fact Sheet for Consumers. American Bar Association. Retrieved from www.aba.org Stiegel, L. (2010). Elder justice act becomes law, but victory is only partial. BIFOCAL, 31(4), 1 –2.

12

Disaster Preparedness and Emergency Assistance

INTRODUCTION The headlines for a short article found in the weather section of the Washington Post on June 26, 2010 reads: “3 Heat-Related Deaths and a Record Breaker.” The 1008 heat that broke a 116-year-old record was the lead paragraph, followed by the information that “. . . Each of the people who died in Maryland was 65 or older and all had underlying health conditions. . . . In at least two residences air conditioning was not in use.” The article went on to describe in detail the record-breaking weather and ended with this admonition: “. . . officials urged people to look out for those needing help.” Was there something that could have been done to prevent these deaths? Were the two casualties of the heat not using air conditioning because they did not have an air conditioner or were worried about the expense of running it? And, the bigger question: Are we as a society prepared to accept the deaths of older people during a heat emergency without asking questions about the underlying causes and ways in which we might have ensured their safety? Preparing for a disaster such as a hurricane, flood, or earthquake or a weather emergency like snow or heat is a responsibility that falls not only upon governments and their designated “first responders” but also on the aging network as well. There is widespread consensus that older Americans are too often overlooked in the detailed planning and response and therefore more likely casualties of emergency situations. In 1960, Hiram Friedsam, a pioneer in the field of gerontology, prepared an article for the Journal of Health and Human Behavior entitled 177

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“Older Persons as Disaster Casualties.” He lamented the fact that there had been very little research on or attention given to casualties of disasters. The article was based on his work as a member of the “Disaster Research Group of the National Academy of Sciences—National Research Council” in which he conducted an analysis of demographic characteristics of disaster casualties. He hypothesized that, based upon anecdotal evidence and limited data, “casualties do not occur at random in age terms, but that the young and the old, particularly the latter, become casualties with far greater frequency than their numbers . . . would lead one to expect” (Friedsam, 1960, p. 269). Using data collected on casualties from Hurricane Audrey (1957) in Cameron Parish, Louisiana, he developed an index based on the age and sex of casualties and found that both groups—the young (under 10 years of age) and the old (over 60 years of age)—were much more likely to be in either the “missing” or the “dead” casualty categories after this hurricane than did those between 10 and 59 years of age. This “relative vulnerability” observed 53 years ago appears to be relevant to our discussion of the state of disaster effects in 2010. In this chapter, we will review the planning for emergencies, the extent to which this planning has adequately included older adults, the response to emergencies and the adequacy of the response for older adults, the role of the aging network, and future challenges.

EMERGENCIES AND DISASTERS: PLANNING AND RESEARCH Planning and community response in an emergency or disaster is conducted on national, statewide, and local levels. Key federal agencies, including the Federal Emergency Management Association (FEMA), Centers for Disease Control and Prevention (CDC), and the U.S. Department of Homeland Security, play pivotal roles in not only planning but also responses as well, depending upon the nature of the problem. Websites of these three agencies include consumer information about emergency planning, as does those of the Department of Health and Human Services (DHSS) and the Administration of Aging (AoA). Each state has its own Office of Emergency Planning that plans, monitors risks, and oversees community-level efforts. The Red Cross is the primary nongovernmental organization to be involved in all aspects of an emergency or disaster from planning to serving an important role in seeing to the well-being of the casualties after an event has occurred.

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The “disaster cycle” can be viewed as having four different phases: the mitigation phase, preparedness, response during the disaster, and recovery (Jenkins, Laska, & Williamson, 2007– 2008). The mitigation phase describes the work that needs to be done to minimize the effects of a disaster before it occurs. Iverson and Armstrong (2008) point out that disaster is more than an event and requires careful analysis of the vulnerability of the community and its social strength. Community planning that involves the community and addresses the relative vulnerability along social and economic dimensions could ideally be conducted during this phase. Preparedness is an important part of emergency planning and involves providing education and information to residents to help them prepare for emergencies; having gas in the car and food and water in the pantry and contact information for family, friends, and medical services, for example. Preparedness for an emergency is an individual responsibility, as well as a community responsibility. The response phase refers to the actions of first responders, as well as community and governmental agencies. During this phase, the adequacy of both mitigation and preparedness are put to the test and, as we shall see later in this chapter, does not always work for the older residents. Finally, during the recovery phase a range of resources are needed, including both long-term and short-term resources such as food and shelter, health and mental health interventions, and rebuilding efforts.

Disasters The recent experience of older persons during disasters such as Hurricane Katrina suggests that the vulnerability of older persons persists in emergency situations. Glass (2006) reports that, based on the Knight Ridder analysis of mortality data, although people over 60 years of age represented only 15% of the population in New Orleans, 74% of the dead as a result of Hurricane Katrina were 60 years of age and older. Age is not the only vulnerability factor, however. The most vulnerable groups in any emergency situation are people with low income, health problems, and mobility limitations, and who are living alone (Wilson, 2006). Unfortunately, advanced age is often closely associated with low income, health and mobility limitations, living alone, and being a woman. In Hurricane Katrina, older people living in the community were at risk and those who were living in skilled care facilities were also at risk. Laditka et al. (2008) analyzed the extent to which nursing homes were

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prepared for the disaster. They report that 70 nursing home residents died in 13 nursing homes in the New Orleans area. In their analysis, they observed that while most facilities were prepared for “treatment and triage,” there were many shortcomings, including inadequate supplies and medication, limited record keeping about transfers, staffing issues, and support. Their recommendations suggest the incorporation of nursing homes in the community disaster plan and including them on the priority list along with hospitals. Friedsam (1960) posed two levels of effects of a disaster or large-scale emergency: direct effects that occur as a result of the event and indirect effects that occur later as a result of cascading events that begin during the initial event. Indirect effects could include the deaths of nursing home residents such as those in New Orleans who died as a result of being evacuated and those whose care was diminished during the event and who died later. Mental health issues could also be described as indirect effects. During the event, people are busy managing their own survival in some cases and escape in others. Only later do the mental health issues begin to take center stage in the form of post-traumatic stress disorder (PTSD), depression, anxiety, and other manifestations. These issues can be extremely difficult to handle after a disaster. Research suggests that older adults actually do better after a disaster than younger persons. In one study of adults after the September 11, 2001 terrorist attack (Tracy & Galea, 2006), the highest prevalence of PTSD was found among 18- to 34-year-olds, observed in 13.8%, whereas only 12.2% of those 55+ had PTSD symptoms. Similarly, the rate of depression was lowest among the 55+ respondents. The researchers found an association between ongoing stressors and PTSD among the older respondents and point out that a previous history of psychopathology has also been associated with depression after a traumatic event. The research team led by Lattice also recommended ongoing post event mental health services for resident and staff after a disaster or traumatic event. Their interviews revealed ongoing mental health needs for five months after the event.

Emergencies Emergencies are not a disaster, but they can have disastrous effects on those involved. According to Glass (2006), disasters are events that stretch the professional response options beyond their limit, whereas emergencies are events that require professional response, but this response is sufficient

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for the task. Heat waves are emergencies that are actually more deadly in a year than all other weather-related events, such as hurricanes and earthquakes. The 1995 heat wave of Chicago, for example, killed 700 residents, most of them over the age of 65 (Klinenberg, 2006). As was discussed earlier, the people who died in the heat wave were often old (73%), poor, and living alone. The CDC reports that older adults are more likely to suffer from heat stress because their bodies have difficult adjusting to changes in temperature; they are more likely to have a chronic condition and to take prescription medications that further affect the ability to respond to heat. The 1995 heat wave revealed to Chicago residents and policy makers the need to develop a better approach and plan. Other emergencies are more personal in nature but often require the assistance of first responders. An elder with dementia who wanders off and is lost to his or her family, an elder with early-stage Alzheimer’s disease (AD) who drives his car away and cannot remember where he is or how to get home are variations on the same theme that will become more common as the number of older Americans with dementia increases as predicted in the future. Some states have begun “Silver Alerts” to mobilize the public to help with these cases. The Silver Alerts are modeled after the Amber Alerts issued when a child goes missing. Several states have begun Silver Alerts or related programs. Maryland passed legislation to allow Silver Alerts in October, 2009 and issued their first Silver Alert in November, 2009. In 2008, the National Association of State Units on Aging conducted a survey of state unit on aging directors to explore the Silver Alert model. There were concerns about beginning Silver Alerts expressed by some of the respondents related to the cost associated with Silver Alerts, whether the use of Silver Alerts would diminish the “weaken” the Amber Alert system by making alerts common, and privacy concerns for the elder and their family.

PLANNING FOR THE FUTURE The majority of older adults reside in the community, and both the aging network and public policy support continued independence in the community for all persons, including those with health and mobility limitations. Ironically, this public policy focus on community living can have disastrous effects when a disaster comes along. Research on recent disaster response suggests that there continues to be a disconnect between public health and emergency planning/management efforts and the aging network.

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Nursing homes are not included in community planning strategies. FEMA recommends that persons with disabilities create an informal support network to help them in case of an emergency and the Administration on Aging has check lists and suggestions for the family caregiver to use when planning for emergencies affecting the care recipient. However, there is little evidence to suggest that people use these tools to protect their well-being during an emergency or a disaster. There is also evidence that elders are less likely than others to have needs met after a natural disaster and that isolation after an event occurs increases the negative effects for older adults. Pekovic, Seff, and Rothman (2007– 2008) suggest that there needs to be a coordination of efforts in the planning phase, flexibility in planning to accommodate different contingencies, and clear understanding about the roles of various agencies at the local, state, and federal levels. McGuire, Ford, and Okoro (2007) suggest that some form of surveillance mechanism to articulate the special situations in a community would be helpful in ensuring community residents with mobility limitations. Using databases to identify the location of people with special needs or compiling a registry of people who would need special help during an emergency are two strategies that are in use in some communities. In the examination of the nursing homes during Katrina, Lakitka et al. (2008, p. 1291) identified eight “preparedness domains,” including: 1. Integrating the needs of nursing homes into disaster planning; 2. Using nursing homes as a community resource during a disaster (particular important in rural areas); 3. Ensuring that materials and supplies are on hand to maintain the operation during a disaster; 4. Attending to the diverse needs of patients, visitors, and staff; 5. Preparing geriatric protocols for a range of care; 6. Mental health strategies; 7. Coordinating and planning for transportation; and 8. Ensuring communications.

THE ROLE OF THE AGING NETWORK Diverse components of the aging network have been involved in research, education, and practice in the area of emergency and disaster planning. The Geriatric Education Centers have collaborated to prepare curricula and

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training—Bioterrorism and Emergency Preparedness in Aging (BTEPA) (Johnson et al., 2006). Area agencies have developed local responses to emergency situations and participated in planning, and the state units on aging all have plans and information addressing emergencies and disasters. Nonetheless, there continue to be disconnects in the system that will likely predict that in the next disaster, the oldest old and those with mobility limitations are the most vulnerable. Professor Nelson, our expert commentator, suggests why this problem might continue in the future.

EXPERT’S CORNER Professor Wayne Nelson, PhD Health Science Department, Towson University Towson, MD Can We Learn from the Past and Improve Our Response in the Future? The Katrina disaster provided a stark reminder that the frail elderly face far greater risks of suffering and death during catastrophic storms than any other age group. Almost half of Katrina’s dead were over the age of 75 (Brunkard, Naulanda, & Ratard cited in Allen & Nelson, 2009) 212 of the nearly 1,500 recovered bodies “were found in or around nursing homes and hospitals” (Meade cited in Allen & Nelson, p. 157). The mental images of deprived, distressed, and drowned elders shocked America’s aging service planners who quickly made mass casualty disaster planning (MCDP) a formal policy agenda item. This agenda-setting behavior is predicted by Downs’ reliable issue attention cycle (Bellavita cited in Allen & Nelson, 2009), which also anticipates that after this issue attention peaks, it will slowly decline. The model has five stages. The first of these is the pre problem stage, where the threat is hidden or of little concern. I was a Long-Term Care Ombudsman (from 1983 until 1998) during this pre-(Katrina)-problem phase when mass casualty disaster planning for the elderly was barely a hypothetical thought—almost as veiled as the impending 100-year storm itself. But the broken levies of New Orleans’s triggered the alarmed discovery stage, where the public’s threat salience piqued aging leaders

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into providing a flood of disaster resources and training (Downs cited in Allen & Nelson, 2009). MCDP terms such as all-hazards preparedness, vulnerability-analysis, and continuity of operations plan (COOP) began to pop up at aging conference workshops. A mere four years after Katrina fully, 84% of the 50 state LTC Ombudsmen “reported being ready to help their regional and local programs assist residents during a disaster” (Nelson, Netting Huber, Borders, & Agley cited in Allen & Nelson). New laws enacted mandate that facilities stock reserves of food and water, have electric generators, and conduct annual disaster drills. The Federal government began publishing emergency readiness checklists and other aides, not only for facilities but also for ombudsmen, caregivers, residents, and their families. State and local governments and nonprofits also jumped in, providing a multiplicity of brochures and websites sprouting a bouquet of emergency tips, best practices, and disaster readiness strategies designed for aging specialists of all stripes. But the issue attention cycle predicts that this productive alarmed discover stage will be transient. After a period of vigorous activity, planners and their constituents enter the growing awareness stage, where some begin to question whether or not the planning efforts are sprinkled with fairy dust: Can plans be actually implemented, will they make difference, or are they too meager for a task that is too big or too costly to justify further involvement? Growing doubts and the distractions of new priorities eventually usher in the declining interest stage, where involvement continues to cool. Barring another massive catastrophe, interest will continue to decline, eventually leading to apathetic post problem stage— where hardly anyone cares (Downs cited in Allen & Nelson, 2009). I personally believe that we are either very late in the alarmed discovery stage or early in the growing awareness stage. Disaster readiness issues are still agenda items for aging planners and academics alike, but the current economic crisis is raising new concerns and priorities. The question for the future is, will having gone through the entire issue attention cycle produce sufficient systemic changes, however modest, that will provide protection for the elderly when apathy holds sway but disaster strikes anyway. We started this chapter by talking about one of the aged’s most powerful enemies—hot weather. We will end with the other extreme—a powerful snowstorm that keeps people inside their homes.

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During a series of focus groups conducted among Montgomery County, MD residents as part of a project to develop a plan for the aging of the county, we heard from elders about their needs in the community (Wagner et al., 2007). Many of their concerns had to do with small, yet important, aspects of trying to manage weather-related emergencies. One participant asked if there could not be a system in place to check on her well-being after a storm and the loss of power or phone service. Others spoke of the importance of having help with snow removal, removal of debris after a windstorm, and help getting food and other provisions during and after a blizzard. In 2010, Washington, DC was hit with recordbreaking snow that kept businesses closed and residential streets nearly impassable for days. Telephone service was uninterrupted in most areas, and so it was possible to communicate with an older parent or have a friend check on their well-being. Many older residents were literally held captive in their homes, with unplowed sidewalks making it impossible for them to even walk to a corner grocery. Hospitals were asking for volunteers with four-wheel drive vehicles to help transport sick and injured people to medical services. As our population continues to age in place, it will become even more important that the aging network take an advocacy position on this issue and remind planners and community leaders of the importance of not only including issues related to the aged and disabled residents in their planning but also listening to the voices and opinions of those with special needs. Planning for emergencies and disasters is planning for the safety of a community, and involvement of the entire community is a necessary prerequisite for a safe community.

DISCUSSION QUESTIONS 1. Search the Internet for an agency that has a site dedicated to emergency/ disaster preparedness initiatives for the elderly. Describe these roles and initiatives. Do they seem effective, and do you think they will continue to provide protection through the predicted future apathy of issue attention cycle’s post-problem stage? 2. What are the unique disaster-related needs and risks facing the frail elderly (especially isolates or the institutionalized) in your community? Do you think that these needs will be met in a major public disaster? Give an example of which agency, organization, or individuals will do what?

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REFERENCES Allen, P. D., & Nelson, H. W. (2009). Katrina and Rita’s impact on older adults: A social work perspective. In E. C. Katie (Ed.), Lifespan perspectives of natural disasters (pp. 153– 169). New York, NY: Springer Publishing Company. Friedsam, H. J. (1960). Older persons as disaster casualties. Journal of Health and Human Behavior, Winter, 4, 269 –273. Glass, T. (2006). Disasters and older adults: Bring in a policy blindspot into the light. Public Policy and Aging Report, 16(2), 1, 3 –7. Iverson, R., & Armstrong, A. (2008). Hurricane Katrina and New Orleans: What might a sociological embeddedness perspective offer disaster research and planning? Analyses of Social Issues and Public Policy, 8(1), 183– 209. Jenkins, P., Laska, S., & Williamson, G. (2007–2008). Connecting future evacuation to current recovery: Saving the lives of older people in the next catastrophe. Generations, Winter, 31, 49 –52. Johnson, A., Howe, J., McBride, M., Palmisano, B., Perweiler, E., Roush, R. et al. (2006). Bioterrorism and emergency preparedness in aging (BTEPA): HRSAfunded GEC collaboration for curricula and training. Gerontology and Geriatrics Education, 26(4), 63 –86. Klinenberg, E. (2006). Before the flood: What policymakers can learn from the Great Chicago Heat Wave. Public Policy and Aging Report, 16(2), 1, 20–21. Laditka, S., Laditka, J., Xirasagar, S., Cornman, C., Davis, C., & Richter, J. (2008). Providing shelter to nursing home evacuees in disasters: Lessons from Hurricane Katrina. American Journal of Public Health, 98(7), 1288–1293. McGuire, L., Ford, E., & Okoro, C. (2007). Natural disasters and older US adults with disabilities: Implications for evacuation. Disasters, 31(1), 49–56. NASUA. (2008). Silver alert initiatives in the states: Protecting seniors with cognitive impairments. Retrieved June 28, 2010, from www.nasua.org Pekovic, V., Seff, L., & Rothman, M. (2007 –2008). Planning for and responding to special needs of elder in natural disasters. Generations, Winter, 31, 37–41. Tracy, M. & Galea, S. (2006). Post-traumatic stress disorder among older adults after a disaster: The role of ongoing trauma and stressors. Public Policy & Aging Report, 16(2), 16 –19. Wagner, D., Cox, D., DeFreest, M., Nelson, W., Niles-Yokum, K., & Smith, C. (2007). Imagining an aging future for Montgomery county, MD. Towson, MD: Center for Productive Aging, Towson University. Wilson, N. (2006). Hurricane Katrina: Unequal opportunity disaster. Public Policy and Aging Report, 16(2), 8–13.

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Education and Lifelong Learning INTRODUCTION Educational opportunities for older adults have increased as institutions of higher education have recognized the potential for having adults of all ages on campus and the need to move some of their programming into the community. As the cohort aged 18– 24 decreases, the opportunities for adults to fill their places in the classroom become more apparent. COMMUNITY COLLEGES Community colleges have become community educational centers, not only for people seeking Associates of Arts degrees but also for individuals wanting to upgrade their skills and explore new areas of learning. Responding to this interest, many colleges have developed extensive noncredit programs that are offered both at the college and at sites in the community. For example, reading, literature, history, and art classes are often taken into nursing homes, senior centers, and assisted living facilities. Many of these noncredit programs, freed from semester structure, can be offered on a flexible time schedule. They are geared to the older person and often designed in conjunction with groups of older adults. Community colleges have also encouraged older persons to take courses on campus through tuition waivers, pre campus counseling, and remedial supports. For example, Dundalk Community College in Maryland offers a full semester of orientation for older persons. During orientation, each department is visited, time is spent in the labs and with the faculty, and remedial materials are made available. The campus-based 187

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courses include some geared particularly toward older adults, as well as regular offerings that can be taken for credit or audited. The tuition waiver can come either through the decision of the college itself or as part of a city, statewide, or county program of tuition waivers. Because of the unique nature of the community college, it has done more to encourage older persons to become involved in education than any other educational group.

COLLEGE AND UNIVERSITY PROGRAMS Universities and 4-year colleges have also expanded their participation in educational programming for older persons, most commonly through tuition and fee reductions or waivers. Universities have provided everything from a minimum reduction in fees for audit only to full waiver of tuition and fees for any course or program of study. This latter approach usually offers all courses, degrees, and recreational facilities without cost to any state resident aged 60 or over. The “golden age” program may require that the older student is retired or only working part-time in order to qualify for free or discounted tuition. Evaluation of these programs shows that older adults who participate in these programs integrated themselves into the overall student body and did not ask for any special orientation, group meetings, or activities at the time they enrolled or at any time later. The university programs also appear to be primarily attracting older adults with previous college experience. The extent to which a college or university can offer free programs is dependent upon the size and status of the institution. For large state universities, the effect of 300 tuition-free students on the overall class structure would be minimal. For a small college or university, 300 students could make a significant difference in the course offerings and the size of classes. It is partly for this reason that education opportunities for older persons vary greatly.

PARTNERSHIPS: SUCCESS REALIZED As we welcome a new cohort of older adults, it is important to not only recognize the needs and desires but also to be able to meet those demands. When it comes to educational opportunities success has been realized in innovative ways.

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Road Scholar Road Scholar, formerly known as Elderhostel, was established in 1975 as a national educational program. As it was originally formatted, the program sponsored educational opportunities on college campuses during the summer months. Elderhostelers stayed in dormitories with other summer students on the particular college campus for that week of courses. The purpose of the original program was to create opportunities for Elderhostelers to live with other students, participate in campus activities, and take courses from regular campus faculty. Participants came from all over the country and went from campus to campus across the nation. Program participants paid their own transportation and for the course, room, and board; there were no additional charges for the program. By 2004, 10,000 elderhostel programs were being offered in 90 countries (Osborne, 2005). The enthusiasm among seniors for Elderhostel should not be surprising. As the number of older adults with extensive educational backgrounds continues to grow, there will be more demands on their part for advanced educational opportunities. In fact, the founders of Elderhostel have heard the call for increased and more varied opportunities and in 2004 introduced a series of new adventures called Road Scholar. In 2009 Elderhostel renamed its programs Road Scholar. The name change is an attempt to join the “journey and realworld experience” with the academic or scholar side of their programming, which “reflects a deep appreciation for learning. Together the words capture the heart of our program experience: learning from expert instructors, enhanced by direct discovery of an idea, issue, subject, or place” (www.roadscholar.org). A locally based program is offered through the Virginia Center on Aging at Virginia Commonwealth University (VCU). The Elderhostel (Road Scholar) program at VCU has been offering programs for more than 30 years, with more than 60 different offerings at six sites, annually. Program participants have much to choose from, including Shakespeare and Renaissance Literature, History and Art, Music, and Appalachian History. Oasis Another successful partnership is The Oasis Institute, a nonprofit educational organization aimed at the 50+ population. Similar to Road Scholar, Oasis provides a myriad of travel and educational opportunities. Originally

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funded through a two-year grant from the Administration on Aging in 1982, Oasis provides programming for adults aged 50 and over in 27 U.S. cities (www.oasisnet.org). Learning in Retirement Programs “Learning in Retirement Programs” have been developed in both universities and community colleges around the country. These programs are selfdirected educational programs that are membership based. The members determine the curriculum and recruit faculty—often from their own membership. In 2001, the Osher Foundation began to offer financial support to select lifelong learning programs. The first two programs receiving grants were the University of Southern Maine to expand its existing program and to Sonoma State University. Currently there are 119 lifelong learning programs supported on campuses in 50 states (www.osherfoundation.org). They are referred to as “Osher Lifelong Learning Institutes” and are supported by a national resources center that is housed at the University of Southern Maine. To date, there also continue to be many independent learning in retirement programs on campuses across the country. THE FUTURE OF EDUCATIONAL PROGRAMS FOR OLDER ADULTS As the number of highly educated elders enter late life, it is likely that programs such as Road Scholars, Learning in Retirement, and Oasis will continue and increase in popularity. In the future, we can also expect to see increasing numbers of elders not only in special educational programs such as these but also in the regular classrooms as well, preparing for second or third careers and/or pursuing scholarly activities for their own personal purposes. Educational programs for older adults can also act as a conduit for elders to pursue community work that is experiencing a shortage of workers—in the public school system or as direct care workers, for example. With an older population that is aging into late life with higher levels of academic attainment and different attitudes about the “third age,” education will play an increasingly important role. REFERENCES Osborne, L. (2005, February 18). Never too old to learn. New York Times, pp. D1, 4. Retrieved from http://www.roadscholar.org/ The Oasis Institute. Retrieved from http://www.oasisnet.org/AboutUs.aspx The Osher Foundation. Retrieved from http://www.osherfoundation.org

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The Nexus of Policy, Program, and Practice

INTRODUCTION As we near the end of our exploration of policies and programs dedicated to improving the lives of older adults, it is important to address emerging themes that are critical to all of our lives as we age. While these concepts may not all be addressed in the form of public policy, our hope is that as we move through the 21st century they will become an integral part of policy discussions and programming and practice. This chapter will provide information and resources related to the following four themes: creativity and aging; diversity; religion and spirituality; and advocacy. At some point, if we are to address the total person and embrace aging, there will need to be a multidisciplinary approach to policy, programs, and practice. Just as we need to work toward the integration of health care in a multidisciplinary way, we need to also look toward integrating programs and services that address the whole of who we are. We are not just connected to society and our local communities by our desire to age well and help others do the same, but by the very humanness of who we are. This includes our creative selves, our spiritual selves, where we come from, and who we are, and for some, our desire to advocate for the understanding of our aging self. In this chapter, we will discuss creativity and aging, diversity, religion and spirituality, and advocacy and provide some resource information after each section.

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CREATIVITY AND AGING Just as aging is a journey and not an end, creativity is a process or an outlook, not a product. It is a distinctly human quality that exists independent of age and time, reflecting a deeper dimension of energy capable of transforming our lives at any age. —Gene Cohen, “The Creative Age”

Creative aging has come into its own over the past decade. The father of creative aging, the late Gene Cohen, led the way with the first longitudinal study of creative aging. Creativity has been defined as “creating an original idea, perspective, process, or product that has an impact” (Cohen, 2000, p. 12). Cohen’s research revealed four key aspects of creativity: 1. 2. 3. 4.

Creativity strengthens our morale in later life; Creativity contributes to physical health as we age; Creativity enriches relationships; and Creativity is our greatest legacy.

The aging process brings with it much change, on many levels, including physical, emotional, and social. It only makes sense to look toward ways to adapt to change and often, loss, in creative ways. If creativity helps us to feel better about our older age, provides a way for us to age more successfully and perhaps productively—however, one defines successful and productive—and provides a depth of meaning not only to our own selves but also to those around us, then the questions remains, why do we not see more funding around creativity and aging programs? It would seem, given the research to date, that we would look to the research to guide us and include some aspect of creativity in all of our programming and practice.

INNOVATIVE PROGRAMMING The National Center on Creativity and Aging (NCCA) The NCCA was founded in 2001 to “foster an understanding of the vital relationship between creative expression and healthy aging and to developing programs that build on this understanding.” The following objectives guide the Center in its mission “to evaluate arts and aging programs to identify and promote best practices.”

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1. To distill the lessons of model programs in order to create technical assistance materials and training programs for others to use; 2. To support the replication of best practice models through existing or new arts and aging programs and coalitions throughout the country; 3. To serve as a clearing house for the exchange of information and resources, such as national conferences and national e-newsletter; 4. To create and maintain a database of such programs as a resource to others; and 5. To support research and policy toward developing the field. (www. creativeaging.org) In May of 2005, the NCCA co sponsored and convened the White House Mini Conference on Creativity & Aging. The purpose of the mini conference was to develop recommendations for the White House Conference on Aging. In December of 2005, the White House Conference on Aging took place and because of the work put forth by NCCA, Resolution 58 was passed. The resolution states, “Increase Awareness of the Positive Physical and Psychological Impact that Arts Participation Can Have on Older Americans.” While the resolution was ranked last, at 73 with 224 votes out of 2500 voting delegates, it should be seen as progress not only in the effort to increase awareness of the link between creativity and health but also in continuing efforts to increase programming around the country. Arts for the Aging, Inc. Arts for the Aging (AFTA) is a nonprofit organization in the Washington, DC metro area founded in 1988 that “provides visual, performing, literary and intergenerational arts outreach programs specially designed to enhance the health and well-being of seniors.” The focus for AFTA is on older adults in underserved settings (adult day, nursing homes) who have cognitive and physical impairments. Programs are led by professional artists and include: B B B B B

Dance Drawing Drumming Music Painting

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Poetry Sculpture Cultural outings Art lectures Intergenerational programming

Encore Creativity for Older Adults Encore is a nonprofit organization established in 2007 dedicated “to providing an excellent and accessible artistic environment for older adults, 55 and over, regardless of experience or ability, who seek arts education and performance opportunities under a professional artist.” Encore is just one more organization created as a result of the research conducted by Gene Cohen. The project, formally titled, The Creativity and Aging Study: The Impact of Professionally Conducted Cultural Programs on Older Adults, was funded by several organizations, including the National Endowment for the Arts (lead agency). The project was a partnership between George Washington University and three sites around the country, including Elders Share the Arts (ESTA), Brooklyn, New York; Center for Elders and Youth in the Arts (CEYA), Institute on Aging, San Francisco, California; and The Levine School of Music, Washington, DC. All Encore programs are conducted by professional artists and include the following: B

B

Ten chorales in Northern Virginia, Maryland, and Washington DC: † Schwinhaut Senior Center, Silver Springs, MD † Potomac Academy/The Woodlands, Fairfax, VA † Langston-Brown Senior Center, Arlington, VA † Smithsonian, Washington, DC † Workhouse Arts Center, Lorton, VA † Myerberg Senior Center, Baltimore, MD † Anne Arundel Community College, Arnold, MD † Goodwin House, Alexandria, VA † Goodwin House, Baileys Crossroads, VA † Iona Senior Services, Metro DC Two summer camps: † St. Mary’s Camp at St. Mary’s College of Maryland † Chautauqua Camp

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Stagebridge Senior Theatre Stagebridge Senior Theatre began as an acting class at a senior center in 1978. Based in Oakland, California, Stagebridge is the “Nation’s oldest Senior Theatre Company” and “an arts organization that uses theatre and storytelling to bridge the generation gap by breaking down stereotypes and stimulating more positive attitudes toward aging.” Stagebridge is the West Coast representative for TimeSlipsTM , the creative storytelling method to help people with dementia. Stagebridge Senior Theatre has a Summer Performing Arts Camp, which was the 2009 winner of an American Society on Aging Metlife Mind Alert Award. Intergenerational programs include: B B B B B

Senior theatre productions; Storytelling in schools; Nurses training programs; Acting classes for seniors; and Writing contests for children.

In 1991, the Stagebridge began conducting an annual play of “Grandparent Tales.” This began by adapting popular children’s books about grandparents and performing them for school audiences. This expanded to include storytelling in local schools. School programs include: B B

B

B

B

Student Matinee Performances: Live multicultural theatre for grades K-6 with multiage (10 – 80 years of age) casts; School Assembly Program: “Pass It On!”: diverse grandparent storytellers, musicians, and guess performers “telling stories and acting out tales about the things passed on to them”; Follow-up (classroom workshops): Children learn how to interview their own grandparents and other elders to create their own grandparent tales; includes a Grandparent Tales Writing Contest for students; Classroom workshops on: † Comedy improvisation † Storytelling After School Programs: Professional storytellers and acting teachers help students build storytelling and acting skills, with final event for students and parents.

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Acting programs for seniors include courses on: B B B B B B B B B B

Acting Playwriting Musical revue Singing Improvisation Solo performance Storytelling Directing Playback Theater (combines storytelling, drama therapy, and improvisation) Scene study

DIVERSITY Authors Mehrotra and Wagner (2009) describe diversity as the “differences shared by a group of people that may affect the experiences that the person from this group has in life as well as how he or she is viewed and treated by others” (p. 3). Attention to culture and diversity becomes increasingly important as our society experiences population aging. As was discussed in Chapter 1, older individuals are expected to account for 20% of the American population by 2020 as the “baby boomers” enter their later years beginning in 2011 (Administration on Aging, 2009). The shared differences that shape who we are must be an integral part of aging policies and programs. We have made some progress in the aging network in the recognition of ethnic and racial diversity among older adults and developed programs and approaches to the inclusion of these elders, although there is much work left to do in this area. In this section, we will discuss a group that continues to be on the margin of aging services and recognition by the aging network: the lesbian, gay, bisexual, and transgendered (LGBT) community. The resources identified in this section include those focused not only on the LGBT community, but also on diversity in general including ethnicity, race, and language. According to SAGE—Services and Advocacy for LGBT Elders—we have made some progress in advancing the human rights of LGBT elders, but there is much to do. SAGE is the world’s oldest and largest nonprofit agency dedicated to meeting the needs of and advocating for seniors who

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are lesbian, gay, bisexual, or transgendered. Professionals who work in the aging network are often insensitive to the needs of LGBT elders or are not culturally sensitive in their interactions with them. This has resulted in a reticence on the part of LGBT elders to seek help when they need services. Orel (2004) conducted focus groups of LGBT elders to explore the situations they face and their attitudes and concerns. The elders were concerned about many of the same areas that are of concern to heterosexual elders—health, housing, spirituality, mental health, and social networks— but with a twist. Health concerns included safe sex and the overuse of tobacco and alcohol. The cost of health care was also a concern, as it is with most elders. However, home-based long-term care services posed a problem. The women in the focus groups had not come “out” with their parents, but they had allowed their mothers to move into their home in order to provide them with care. The daughter and her partner were required to sleep in different rooms to perpetuate the secret of their relationship, which placed a strain on that relationship. Seeking mental health services was viewed as a challenge because of their sexual orientation and the experience with mental health professionals who tried to “re-orient” their sexuality. Their LGBT social network was vital to their well-being. This network provided them with support and openness that were not available in their other interactions. As younger cohorts enter into old age, it is likely that fewer will be “in the closet” but not necessarily likely that they will be well received in the aging network of services. In a recent meeting with a local aging network professional, gerontology students asked what services were available to the LGBT community. The professional did not know what LGBT meant. It is likely that this issue will be more difficult to manage than other types of diversity that are emerging in the older population. In fact, some research suggests that the aging network is “. . . more homophobic and heterosexist than the general health care system because the attitudes and beliefs within the aging network have gone unchallenged” (Orel, 2004, p. 73). In 2006, the State of California passed the “Older Californians Equality and Protection Act (AB2920). The law requires that the California Department on Aging and the area agencies on aging ensure that programs and services for elders take into account the needs of the LGBT elder. Specifically, it requires the state unit on aging to include the needs of this community in their plans, to provide technical assistance to local agencies, and to ensure that Older Americans Act and Older Californians Act services are available to everyone regardless of sexual orientation.

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Recently (April, 2010), President Obama issued a Presidential memorandum that required the Department of Health and Human Services to develop standards for Medicare- and Medicaid-funded hospitals to allow patients to determine who was allowed to visit them. On June 23, 2010, the Centers for Medicare and Medicaid Services proposed a set of rules to support this memo. The rules will require that hospitals allow each patient to determine who visits them during their stay, regardless of whether they are a “family” member or a domestic partner, and the patient would have the right to withdraw this permission at any time. This is a basic human right and, one that the LGBT community has not had in the past. The policy recommendations of SAGE include one that stipulates the revision of administrative procedures for the OAA to add “lesbian, gay, bisexual, and transgender persons” to the list of vulnerable populations that get special focus and interest in the allocation of federal funds and to require that state agencies collect data about this population. SAGE is also interested in having national legislation passed similar to the California law, an amendment of all housing laws and programs on a federal level, and special training and procedures for ombudsmen so that they can more effectively resolve discrimination on the basis of sexual orientation issues. According to the AoA, between 1.75 and 4 million Americans 60 years of age or older are lesbian, gay, bisexual, or transgender (2010). In an attempt to address issues faced by older LGBT adults, the Administration on Aging (AoA) is currently funding the first national technical assistance resource center. SAGE, Services and Advocacy for GLBT Elders, is a nonprofit agency dedicated to “the health and social disparities faced by LGBT elders (AoA).” The center is charged with the following: B B B

Educating mainstream aging services organizations about the existence and special needs of LGBT elders. Sensitizing LGBT organizations to the existence and special needs of older adults. Educating LGBT individuals about the importance of planning ahead for future long-term care needs.

According to the AoA, a network of 15 SAGE affiliates has been created across the country to serve LGBT elders at the local level (http://www. sageusa.org/index.cfm). The AoA is making strides to address issues related to diversity, including providing resources and funding for improving cultural

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competency, and information related to LGBT seniors. Additionally, the Department of Health and Human Services, Office of Minority Health (OMH) develops policies and programs that aim to eliminate health disparities. The Health Resources and Services Administration provide related resources for care providers. And finally, at the national level, the National Center for Cultural Competence (NCCC) works to “design, implement, and evaluate culturally and linguistically competent service delivery systems” (www.aoa.gov).

Federal Resources Source: Administration on Aging Department of Health and Human Services, Office of Minority Health (OMH) The mission of OMH is to improve and protect the health of racial and ethnic minority populations through the development of health policies and programs that will eliminate health disparities. http://www.omhrc.gov/templates/browse.aspx?lvl=1&lvlID=3 Cultural Competence Resources for Health Care Providers Resource page for health-care providers published by the Health Resources and Services Administration. http://www.hrsa.gov/culturalcompetence/ National Center for Cultural Competence (NCCC) The mission of NCCC is to increase the capacity of health and mental health programs to design, implement, and evaluate culturally and linguistically competent service delivery systems. http://www11.georgetown.edu/research/gucchd/nccc/ SAGE, Services and Advocacy for GLBT Elders A nonprofit agency dedicated to “the health and social disparities faced by LGBT elders.” http://www.sageusa.org/index.cfm

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National Gay and Lesbian Task Force The National Gay and Lesbian Task Force is a national organization dedicated to building the grassroots power of the LGBT community. The Task Force has identified aging as a critical issue for the LGBT community. http://www.thetaskforce.org/issues/aging Tools Source: Administration on Aging US Administration on Aging: A Toolkit for Serving Diverse Communities This Toolkit provides the Aging Network and its partners with replicable and easy-to-use methods for providing respectful, inclusive, and sensitive services for any diverse community. http://www.aoa.gov/AoARoot/AoA_Programs/Tools_Resources/Docs/ AoA_DiversityToolkit_full.pdf MedlinePlus Gay, Lesbian, and Transgender Health Resources LGBT individuals have special health concerns besides the usual ones that affect most men and women. MedlinePlus has a section on their Website that provides information about these specific health issues. http://www.nlm.nih.gov/medlineplus/gaylesbianandtransgenderhealth. html Tools for Protecting Your Health-Care Wishes A guide prepared by Lambda Legal to assist LGBT in protecting their rights in health-care settings. http://www.lambdalegal.org/publications/take-the-power/your-health-carewishes.html Outing Age 2010: Public Policy Issues Affecting Lesbian, Gay, Bisexual, and Transgender (LGBT) Elders This report provides an in-depth look at public policy issues and challenges facing millions of lesbian, gay, bisexual, and transgender people in the United States as they get older. http://www.thetaskforce.org/reports_and_research/outing_age_2010

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Improving the Lives of LGBT Older Adults This report addresses the many challenges facing LGBT older adults and provides broad-ranging policy recommendations for creating a society where all older adults are treated with dignity and respect. http://sageusa.org/uploads/Advancing Equality for LGBT Elders [FINAL COMPRESSED].pdf Organizations The American Society on Aging provides information and resources for professionals in the field of aging. Constituent groups include ASA’s Lesbian and Gay Aging Issues Network (LGAIN) Focuses on the concerns of lesbian, gay, bisexual, transgender, questioning, and intersex (LGBTQI) elder communities of color. NOMA—Network of Multicultural Aging Focuses on issues of aging in a multicultural context. NVL—New Ventures in Leadership A leadership development program for professionals of color in aging. SEOC—Serving Elders of Color A training and networking initiative.

SPIRITUALITY AND RELIGION The terms spirituality and religion are often used interchangeably, but it is important to differentiate. Mehrotra and Wagner write that, “Religion is generally defined as a formal system of belief in God or another supernatural being and refers to efforts aimed at relating the human to the divine” (p. 318). Additionally, specific characteristics include “behavioral, social, doctrinal, and denominational.” Spirituality, while not necessarily a separate concept, “is the human drive for meaning and purpose.” Research and education related to the topics of spirituality and religion in the context of aging and older adults have become more prevalent.

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It is our hope that as we continue to gain information about these concepts and the importance of faith and spirituality and their relationship to our lives as we age, we will begin to see more mainstream programming aimed at interventions and education. While there was much controversy during the Bush years with regard to his faith-based initiatives, there have been efforts to continue to provide funds to religious organizations involved in social welfare programming, including providing assistance to the homeless and providing food to families in need. In 2009, shortly after taking office, President Obama created the White House Office on Faith-based and Neighborhood Partnerships. Section 1 of the Executive Order that established the Office (EO 13199) states that: Section 1. Policy. Faith-based and other neighborhood organizations are vital to our Nation’s ability to address the needs of low-income and other underserved persons and communities. The American people are key drivers of fundamental change in our country, and few institutions are closer to the people than our faith-based and other neighborhood organizations. It is critical that the Federal Government strengthen the ability of such organizations and other nonprofit providers in our neighborhoods to deliver services effectively in partnership with federal, state, and local governments and with other private organizations, while preserving our fundamental constitutional commitments guaranteeing the equal protection of the laws and the free exercise of religion and forbidding the establishment of religion. The Federal Government can preserve these fundamental commitments while empowering faith-based and neighborhood organizations to deliver vital services in our communities, from providing mentors and tutors to school children to giving ex-offenders a second chance at work and a responsible life to ensuring that families are fed. The Federal Government must also ensure that any organization receiving taxpayers’ dollars must be held accountable for its performance. Through rigorous evaluation, and by offering technical assistance, the Federal Government must ensure that organizations receiving Federal funds achieve measurable results in furtherance of valid public purposes.

This shift in policy to include a community partnership is critically important as we consider multidisciplinary ways to address the challenges our communities face not only with regard to aging issues but also from a lifespan perspective. The paradigm shift we have seen in the domestic policies of the current White House should serve as a model for our local policy and programming around aging. The AoA addresses spirituality and religion in the previous resources and tools section in Diversity. The following section will include examples of local innovative programming and organizations.

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Innovative Organizations The Faith and Service Technical Education Network (FASTEN) FASTEN offers informational resources and networking opportunities to faith-based practitioners, private philanthropies, and public administrators who seek to collaborate effectively to renew urban communities. The Roundtable on Religion and Social Welfare Policy The Roundtable is a source of expert, unbiased information on policy and legal developments concerning the involvement of faith-based organizations in social services. The Roundtable site is no longer “active” but is still live and provides excellent information in the form of publications and other resources. The Pew Forum on Religion and Public Life Established in 2001, The Pew Forum on Religion and Public Life is part of The Pew Research Center. The Forum “seeks to promote a deeper understanding of issues at the intersection of religion and public affairs. The Pew Forum conducts surveys, demographic analyses, and other social science research on important aspects of religion and public life in the U.S. and around the world. It also provides a neutral venue for discussions of timely issues through roundtables and briefings.” Innovative Programming The California Lutheran Homes Center for Spirituality and Aging The California Lutheran Homes Center for Spirituality and Aging is located in Anaheim, California and “provides advocacy and education about spirituality as it is experienced in the aging process, within both faith and longterm care communities.” The Center supports “whole person” wellness and the power of the mind– body – spirit connection to heal and transform lives. The Center’s mission is to “transform the way long-term care communities and faith communities meet the needs of older adults based on the understanding that aging is a spiritual journey.” The Center provides programming for a variety of populations, including caregivers, faith communities, and professionals who work with caregivers and/or older adults. Below is a sample of current programs available.

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FOR FAITH COMMUNITIES

Elder Ministry in the Congregation. Elder Ministry in the Congregation (EMC) seeks to expand one’s personal and congregational vision of ministry to include elder persons. With the ever-increasing number of elderly persons both within congregations and in the larger community, EMC sees elder ministry as the growing edge of congregational efforts to reach out with the Gospel. BOOK: Ministering to Older Adults: The Building Blocks. Authored/Edited by California Lutheran Homes Center Director, Donald Koepke, this book describes the EMC process complete with all handouts. This is an excellent resource and guide for congregational planning groups who are not able to, or do not wish to, attend a Center training event. For Caregiving Communities, Caregivers, and Long-term Care Professionals Certificate in Spirituality and Gerontology Understanding that spirituality is a deeply personal experience, professional caregivers and faith group leaders have a unique opportunity to enhance the services they provide to the senior community. In this program, participants can understand the complexities of spirituality and apply those insights into their daily profession. http://www.spiritualityandaging.org/index.asp ADVOCACY Advocacy has been an important part of the aging network activities since the aging network began, whether an aging network professional is advocating for an elder with whom they are working or whether they are advocating for a change in public policy. Advocacy for an individual elder can include empowerment of the elder to advocate for themselves or direct action on behalf of the elder to secure a good or service they need. Huber, Nelson, Netting, and Borders (2008, p. 37) identify four basic advocacy types: B B

Self-advocate (working on either individual or collective change); Third-party citizen advocate (friend, family member, etc.);

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Provider advocate (professional or paraprofessional); and Legal advocate.

Regardless of the type of advocacy we are describing, all advocates have one thing in common. They want to make changes that improve, in this case, how older adults live and their access to resource. Although an aging network professional does not always view themselves as doing advocacy, any time they provide information about entitlements or benefits that could improve the quality of life of the elder or gives them tools to use to be a self-advocate, such as information about eligibility, there is advocacy going on. Self-advocacy can be as simple as asking your physician to explain why he/she is prescribing a certain type of medication. Becoming involved in a senior center to make changes that you feel are needed and that would benefit other participants is self-advocacy as well as advocating for others. Family caregivers are frequently involved in providing advocacy for the care recipient to ensure that they have access to services and benefits they need and to which they are entitled. Professionals or paraprofessionals who practice advocacy are anyone who sees something not working for their clients and ask for change. And, finally, legal advocates advocating for their clients, have the parameters of the legal system to frame their work. This discussion of advocacy will primarily cover the groups and organizations that practice collective advocacy. Collective advocacy can take place within a small group of individuals or be housed in a large formal organization such as AARP. Collective advocacy that was practiced in the 1980s and 1990s by The National Council on the Aging (NCOA) shaped much of the aging network and the quality of many of its services. As early advocates for older Americans, NCOA took unpopular positions and mobilized its member to advocate for funding and quality indicators for community services. Working with the National Council of Senior Citizens (NCSC), an organization that represented union retirees, older Americans and professionals came together to advocate for a policy platform that improves the lot of older Americans. The Leadership Council of Aging Organizations was organized and brought together the array of aging organizations that could often take the same position on a policy issue and champion the cause. Both NCOA and NCSC were dedicated to advocacy and worked to make change that would benefit older Americans.

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McConnell (2004) suggest that the type of advocacy practiced by organizations is influenced by the stage of the organization’s development. He articulates several types of organizational advocacy, including: B

B B B

Administrative advocacy to ensure that programs and benefits get to those who are entitled as well as advocacy for new and better ways to manage programs; Program advocacy to improve the quality of services; Issue advocacy that is designed to change the public’s opinion about a policy or an issue; and Legal advocacy through the courts to make positive change.

According to McConnell, the success of advocacy is based upon the organizations “standing” and their constituency, knowledge, resources, influence, passion, and, last but not least, luck. Dr. McConnell was for many years the senior vice president for advocacy and public policy of the Alzheimer’s Association—an organization that has become known outside of Washington, DC because of its service, research, and advocacy that is focused on one issue. Advocacy Groups: Two Examples The Gray Panthers The Gray Panthers was a collective of people who worked together on ageism, racism, and poverty under the charismatic leadership of its founder, Maggie Kuhn. The collective action of the Gray Panthers included activities that brought young and old together to educate and inform others about the common human problems of ageism, racism, and poverty and theatre to make their point. Gray Panthers has become a bit more quiet since the death of its founder, but is still operating on issues of importance to their mission. The Older Women’s League (OWL) The Older Woman’s League (OWL) is another grassroots advocacy organization that has a mission that has evolved over time in the form of a policy agenda. OWL was begun in 1980 by Tish Sommers and Laurie Shields. Started by Tish Sommers, who found herself a “displaced” homemaker after her divorce, OWL continues to work on issues that are related to the policy agenda. With an office in Washington, DC, and a set of electronic

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resources, the small staff of OWL persist in their efforts to improve the quality of life of older women. OWL is the only organization that works exclusively on issues related to older women. Advocacy organizations working in the elder “space” have evolved over time and are now focused on other types of activities that may correspond with their revenue. For example, while NCOA continues to have a strong advocacy posture in Washington, DC, they are also becoming service innovators in partnership with federal agencies. There is no longer an NSCS organization, but the retired union members are represented by a range of organizations, including the Association of Retired Americans (ARA), an organization that engages in advocacy and also in the provision of education to their members. The National Area Agency on Aging Association (N4A) represents the Area Agency on Aging network across the county and the National Association of State Units on Aging. While these organizations participate in advocacy activities, their first priority is their members. Stone (2004, pp. 60– 61) discusses the change in advocacy for older Americans and the shift from focused advocacy on the well-being of elders to their constituents and their needs. In her essay, “Where have all the advocates gone?” Dr. Stone identifies a number of factors that have led to a diminishing advocacy presence for older Americans, including: loss of champions, the success of previous advocacy that has helped create an “aging network,” the problem associated with too many advocates fighting for a shrinking resource foundation, the discovery of aging by special interest organizations, and the persistence of ageism. As evidence of the lack of advocates, Dr. Stone draws attention to the ease with which the “greedy geezer” message took hold in the 1980s and continues to be the primary message when entitlement programs are discussed. She recommends the development of coalitions, changing the message from fear to opportunity, and training of advocates to replace those whom we have lost. Advocacy organizations are supported by their membership, donations, and/or grant funding. The current recession has had an adverse affect on many of these organizations as giving has diminished and grant funds are more difficult to get. Those advocacy organizations that are true to their core missions are finding it more difficult to secure funding that supports these missions; other advocacy organizations have expanded their focus in order to secure necessary funding to continue operation. There is still much work to be done to address the issues of ageism, sexism, and unequal access to resources, and this recession may end up having a chilling effect on the advocacy community that works on those

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core issues. The adage “only the strong survive” might work in corporate America but will not likely apply to a future in which there is a vibrant advocacy community working on changing the status quo. Advocacy Activities: Two Case Studies The National Center for Creative Aging The National Center for Creative Aging (NCCA) has launched an advocacy campaign “To raise public awareness and to win support for the establishment of a new stream of federal funding dedicated to arts and aging programming.” NCCA has partnered with the National Institute of Senior Centers and the National Association of State Arts Agencies. NCCA has identified twenty states that will participate in the campaign. This coalition approach to advocacy can be viewed as model for other organizations. Advocacy activities outlined by NCCA include: B B

B

Holding of a national policy conference preceded by town hall meetings conducted across the country; Signing a national petition calling for a referendum leading to the legislation of a separate stream of funding for arts and aging programming; and Participating in a range of art making projects, including “Art of Aging” visual arts exhibitions (http://www.creativeaging.org/policy/).

OWL In 1980 OWL founders addressed their first issue, “displaced homemakers”—women who had spent their adult lives raising children found themselves alone after being divorced and discovered that there were few opportunities for them to translate the skills that they had developed as homemakers to the world of work. In the 30 years since OWL was founded, its work has been supported by chapters of women and men who are concerned about sexism, ageism, and the human rights. An agenda guides the work of OWL and defines its advocacy efforts. This agenda includes: B B B

Universal, affordable, accessible, and quality physical and mental health care. Expansion of Medicare and Medicaid to include the full range of services needed by mid-life and older women, including long-term care. Preservation of the social insurance principles of Social Security.

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Better pensions for women. Laws barring age and gender discrimination. Pay equity. Monetary credit for caregiving. Safe, accessible, nondiscriminatory, and affordable housing. Public transportation that meets the needs of older persons. The elimination of exploitation and abuse of older women. The right of all persons to remain in control of decisions throughout their lives.

OWL, the voice of mid-life and older women, has a small staff and a small budget. In addition, many of the membership chapters that have sustained OWL have “aged” out of active involvement in grassroots advocacy and some have disbanded. The positions that guide the work of OWL are not positions that easily attract funding from either foundations or corporations. During the advocacy period before the passage of the health-care reform act, OWL was supporting “Medicare-for-All” as the preferred strategy for health-care change. When it became apparent that there was not adequate support for this position, OWL joined forces with other progressive groups in Washington to work on health-care policies that could support its mission and agenda. One of these issues was age rating. Age rating has been a common practice in health insurance. Age rating contrasts to community rating in which everyone is charged the same premium for their health insurance. In an age-rating system, young people are charged less than older people—a ratio of as much as 5:1. Although the advocacy work of OWL did not result in the elimination of age rating in the new health-care bill, OWL’s strong position on this important issue with many implications for the older population was an important message for the aging network and an opportunity to educate members and other aging advocates about the importance of continuing to work on this issue. OWL has also been actively working on Social Security and the importance of maintaining it as a social insurance program. During the effort to privatize Social Security undertaken during the Bush Administration, OWL brought young and older women who had benefitted from Social Security to community forums to educate people. Currently, OWL continues its work on Social Security and is developing messaging and information for other organizations to use about Social Security and working closely with like-minded organizations to work on a campaign to keep Social Security strong and in its current form.

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The innovative approach OWL has taken to the recession is one that relies on new technology. Using a blog, listserves, Facebook, and websites, OWL is reaching out to new members, activists, and the curious with important information about policy issues affecting mid-life and older women and their families. This incorporation of new technology is also an excellent way to recruit and engage new members to an organization that has a focused mission. The OWL leadership believes that the organization has a unique position that is essential to the development of better policies in the future for women of all ages and their families (http:// www.owl-national.org). ACTIVITIES AND QUESTIONS Creative Aging 1. Explore your local resources to find creative aging resources for older adults. Where are they located? Who funds them? What activities are available? 2. Visit a creative aging site in your community. In advance, set a time to visit and meet with the staff and/or the director to conduct interviews. Ask the staff if they have an older participant who might be willing to talk to you about their experiences and why they joined. Diversity 1. Visit the Federal Interagency Forum on Aging to explore demographic information and key indicators of well-being. Identify demographic characteristics and related key indicators. Based on your findings, consider how you might address some of the challenges from a policy and/or program perspective (http://www.agingstats.gov). 2. Search the internet for resources for older LGBT individuals. Select one site and outline their programs and services, where their funding comes from, and how the site differs from other sites. Spirituality and Religion 1. Imagine you are a 75-year-old female who has just transitioned to an assisted-living facility. How would you find out what resources are

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available to you in your local community? Is there a place of worship near you? If so, how do you plan to get there if you do not drive? 2. As the director of a faith-based organization serving the elderly, you are interested in applying for a grant for funds to help you continue to serve those in your community. Research the options for private, federal, and local funding to continue your work. Advocacy 1. Research the advocacy organizations and compare the activities, programs, and stated progress. Write a reaction paper that outlines what these organizations are doing and grade them on their results. For those organizations that received a poor grade or could have done better, provide action items that would help them receive a better grade in the future. Consider Stone’s “where have all the advocates gone” discussion. 2. What can the aging network do to interest people in getting involved in advocacy? Use the concepts outlined in the related section and develop an action plan for the aging network. Consider a multilevel approach from the ground up—local, state and federal. REFERENCES Administration on Aging. (2009). A Profile of Older Americans. Washington, DC: AoA. Arts for the Aging, Inc. Retrieved on January 28, 2010, from www.aftaarts.org California Equality: eqca.org AB 2920 FACT Sheet. Retrieved from www.eqca.org Cohen, G. (2000). The creative age. New York, NY: Harper Collins. Encore Creativity for Older Adults. Retrieved on January 28, 2010, from www. encorecreativity.org Executive Order, 13199. Retrieved June 5, 2010, from http://www.whitehouse.gov/ the_press_office/AmendmentstoExecutiveOrder13199andEstablishmentofthePresidentsAdvisoryCouncilforFaith-BasedandNeighborhoodPartnerships/ Huber, R., Nelson, H., Netting, F., & Borders, K. (2008). Elder advocacy: Essential knowledge and skills across settings. Belmont, CA: Thomson Publishing. McConnell, S. (2004). Advocacy in organizations: The elements of success. Generations, XXVIII(1), 25 –30. Mehrotra, C. M., & Wagner, L. S. (2009). Aging and diversity: An active learning experience (p. 3). New York, NY: Taylor & Francis.

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Orel, N. (2004). Gay, lesbian and bisexual elders: Expressed needs and concerns across focus groups. Journal of Georntological Social Work, 43(2/3), 57 –77. OWL. www.owl-national.org National Center on Creativity & Aging. Retrieved from http://www.creativeaging. org National Center for Creativity & Aging. Retrieved from http://www.creativeaging. org/policy/ News Release: Medicare proposes new rules to ensure equal visitation rights for all hospital patients. Retrieved June 23, 2010, from http://www.hhs.gov/news/ press/2010pres/06-2010623a.html SAGE Website. Retrieved June 28, 2010, from www.sageusa.org/about/ Stagebridge Senior Theatre. Retrieved on February 1, 2010, www.stagebridge.org Stone, R. (2004). Where have all the advocates gone? Generations, XXVIII(1), 59–64.

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Challenges for the Aging Network The years teach much which the days never knew. —Ralph Waldo Emerson

With the recent death of Robert Butler, one of the “fathers” of the field of gerontology and the Pulitzer Prize winning author of Why Survive: Aging in America, it is only fitting to consider his question asked in 1975: Why Survive? The latter part of the 20th century saw an enormous growth in the number and quality of programs and services oriented to older Americans. The early part of the 21st century is witness to the incredible phenomenon that is population aging, a journey that will take us to places heretofore unseen. There are many challenges associated with population aging for both the larger society and the aging network. The aging network should take a leadership position in addressing these challenges, which means that, in order to remain a vital network, its members must be up to the task to examine things according to what they might be, rather than what they have been. The lives of older Americans will be different from those who preceded them into old age, and the changes that will occur both as a function of the new cohorts entering late life and by their force of their numbers will reshape society and redefine the role of the aging network. Since 2000, an increasing number of older Americans have either remained in the workforce or returned to it. In the first decade of the millennium, we have seen a gradual erosion of the expectation that old age is a time of rest and relaxation and retirement. Many retirees spent their retirement engaged in their communities and in activities that they had postponed while working. Increasingly, older adults will require a wider

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range of options and a different approach to this phase of life. The aging network of programs and services could play an important role in helping older Americans plan and implement their own approach to late life at this time of changing realities and opportunities. As was discussed in Chapter 5, during the 2001 recession in the United States, the labor force participation of older workers increased. This increase is important not only because it occurred during an economic recession but also because it reversed a decade-long pattern of earlier retirement among American men. Another indicator of changing times comes from the U.S. Bureau of Labor Statistics. They project an 84% increase in workers over the age of 75 between 2006 and 2016 and an 83% increase in workers between the ages of 65 and 74 in that same time period. Therein lies another very important challenge to an aging society—How can we provide the tools and support needed for older Americans to continue to play a meaningful role in the workforce? THE CHALLENGE OF A GROWING AGING POPULATION One of the biggest challenges to the aging network of a growing and expanding older population is to educate younger members of society and policy makers about this expansion and directly confront misperceptions about the negative effect on society. Today’s older population is different from the past and tomorrow’s older population will be different from those we see today. The highly educated elders of tomorrow will enter old age not only with the higher expectations that come with education but also with skills and interests that will be directed at solving problems faced by society. It will largely fall on the aging network to communicate that fact to the larger population and to do their part in seeing that the negative effects of ageism and other stereotypes are directly confronted with facts. INCREASING DIVERSITY The challenge to program and services is how to utilize the vitality of new cultural infusions while maintaining individual cultural diversity that makes us who we are. The United States of the 1960s was a country of White descendants from Western Europe. Added to this group was a substantial population

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of Black residents with African roots, Native Americans whose numbers had been depleted through almost two centuries of warfare and impoverishment, Latino residents whose roots could often be traced to periods before the annexation of the Southwest into the United States, and a small population of Asians, predominantly from Japanese and Chinese backgrounds. The United States in 2010 is considerably different from the United States of 1960. The Latino population is rapidly growing through immigration and a high birth rate. Latinos are now the largest minority population in the United States, coming from a variety of countries in Latin America, with a diversity of cultural backgrounds and beliefs. The African-American population continues to grow, but not as rapidly as the Latino population. The Asian population is also growing rapidly, and is very visible in its concentration in a number of urban areas. This population growth, spurred on by immigration reform of 1965 and the end of the Vietnam War, now includes not only substantial numbers of Chinese and Japanese but also Vietnamese, Cambodians, Laotians, Filipinos, Indians, and Koreans. Political conditions in countries such as Haiti have also promoted immigration to the United States. Political problems in other areas of the world, including Eastern Europe and Hong Kong, promise to continue the United States’ role as the destination of choice of individuals suffering economic or political problems. An additional piece of the diversity picture includes sexual orientation and the education and increased awareness around related issues. As was mentioned in Chapter 14, between 1.75 and 4 million Americans 60+ are lesbian, gay, bisexual, or transgender (Administration on Aging, 2010). Finding ways to address the challenges and opportunities for LGBT elders is critical as we work toward a more inclusive and diverse aging society. Some of the seniors who will need services in the coming decades arrived in the United States as adults of various ages. Others arrived as children. Some will speak English fluently; others will not. Some will have strong connections to family in this country. In other cases, families will have been split by immigration—some remaining in the home country while others immigrated to the United States. Some older adults have spent their lives struggling with identity not only with their race and ethnicity but also with sexual orientation. The aging network faces the challenge of developing a variety of programs that effectively address the needs and desires of all of these groups.

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CHANGING COHORTS As new elders enter old age, the aging network will be challenged to adapt to changing attitudes, preferences, and lifestyles. Programs will need to accommodate the needs and preferences of changing cohorts. All over America “aging in place” is taking on many forms. Whether it be a CCRC with a resident average age of 85 and a limited ability to attract younger replacements, or a membership organization that, as a result of aging and death of members, is shrinking in size, aging in place has many consequences. The challenge to the aging network is twofold: To keep meaningful programs they find worthwhile and to develop programs and services that will be attractive to the baby boomers and the cohorts of older people that will follow them. The success of initiatives such as Road Scholar indicates that many alternatives are available. In 1995, under a grant from the Administration on Aging (AoA), the National Institute of Senior Centers (NISC), a constituent unit of National Council on Aging (NCOA), developed a blueprint for the future for senior centers. The process they used in the development of this blueprint is a useful one for any sector of the aging network. They convened a group of experts and providers and discussed the challenges they would be facing as an aging network program in the future. Out of this consensus conference, a series of recommendations were developed and acted upon. The group recommended that senior centers promote professionalism and high standards through accreditation and certification of staff, develop strategic plans for the future that involved community partnerships, redefine their position within the system of home and community-based services, and incorporate technology into their work and programming. There were also a series of policy recommendations and approaches to funding in their blueprint. Today, those senior centers who embraced some of these recommendations are offering a new and improved array of features that have attracted younger participants to the centers and continue to be seen as a vital part of the community. PROFESSIONALISM OF THE AGING NETWORK The project undertaken by senior centers described above that allowed them to take a look at their future in a strategic fashion was possible because of professionalism in the leadership of senior centers and

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professional linkages that were supported by NCOA, their parent organization. The aging network today is staffed by millions of workers, many of whom entered the network accidentally. In the United States today, we have about 200 academic programs in gerontology that offer graduate degrees and more that offer undergraduate degrees or certificates in aging. The aging network can increase their professional standing and benefits that accrue from that standing by placing a priority on hiring staff with gerontology degrees or training. Participation in associations that support this professionalism and foster networking is also an essential element to preparing for the future.

THE LONG-TERM CARE CHALLENGE Services and programs of the aging network are components of the home and community-based care system that, by definition, is a long-term care system. No longer is long-term care synonymous with a nursing home. Senior centers, adult day service programs, congregate and homedelivered meals, transportation, and the other aging network sectors all play a role in long-term care and will continue to do so into the future. The most pressing and the most costly initiatives in the next few decades will be for long-term care services needed by frail and disabled elders, including patients with Alzheimer’s disease. Paying for these services is one challenge. A more pressing challenge for the aging network is the adequacy and quality of the services and the training and ability of the workforce. Assisted-living facilities (ALFs) are playing an important role in supporting this frail and disabled population in the community. Most ALFs are free-standing and have little to do with other parts of the aging network. However, there is a good argument to be made that integrating some community services with the ALFs in the future would help both the ALFs and the residents. As the old-old population increases, so does the incidence of Alzheimer’s disease and related dementias, frailty, and disability. Cross-over in services offered by senior centers and adult day services will be needed. It will also be important for the aging network to build strong coalitions between all of the participants in the home and community-based care sector in order to acquire adequate funding and access for those who need the services and for addressing any regulatory barriers to integrating service models.

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INNOVATION IN THE AGING NETWORK The role of the public aging network in long-term care and in the provision of programs and services to older people is more in question now than it has ever been since the passage of the Older Americans Act (OAA) in 1965. As Hudson and Kingson (1991) reaffirm, there can be no question that the intent of the OAA was to serve all older persons, regardless of their situation. Over time, as the economic situation of the older population has improved, it has seemed more important to stress the needs of economically needy, socially needy, and impaired older persons. To some extent, the growth of provisions in the OAA is a positive reflection of the growth of the field of aging and groups concerned about specific issues. It is questionable, however, whether one major piece of legislation based on the administrative structure of State Units on Aging and Area Agencies on Aging (AAAs) can effectively embody all of these concerns. There are arguments that AAAs should become coordinators of all community programs and services. However, coordination is a difficult task because of the myriad administrative arrangements that exist to provide services at state and local levels. Many of the most crucial programs and services for the aged are not under the control of the AoA. These include transportation, housing, education, and health care. Because the American social welfare structure is organized along these functional lines (e.g., transportation), an agency concerned with a specific population group (e.g., the aged) has difficulty pulling together the resources and overcoming the “turf” issues that will enable it to mount effective methods. In the 1960s, the Federal Office of Economic Opportunity, organized to coordinate programs for the poor, encountered the same obstacles. Even if it were possible to implement, a coordination of programs and services for older people by the AAA would not necessarily reduce costs for long-term care, delay nursing home placement, or lead to positive changes in functioning among older people (Fortinsky, 1991). The expansion of the field of aging has also brought many new groups into the service provision arena. Hospitals, concerned about reduced numbers of inpatients, are promoting outpatient and in-home services. Private firms have begun to develop products specifically geared to older people, and the housing industry has become extensively involved in the potential retirement and life-care community markets. Voluntary agencies now provide services similar to those offered through public agencies. Employers are beginning to offer elder care programs for employees. Private case managers have developed a network around

Chapter 15. Challenges for the Aging Network

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the country to serve families who can afford these services; private adult day-care programs have also begun to appear in some locales. The public sector, which involves State Units on Aging and AAAs, is now only one element in an enlarged service delivery complex concerned about older people (Quirk, 1991). The failure of federal funding to grow has made it difficult for AoA to maintain its past programs at an adequate level. A change in direction cannot be made without extensive discussion and evaluation of the effectiveness of programs operated through the aging network. Unfortunately, evaluation of these programs is weak, partly due to a lack of standards. Rather than the effects of a program on any number of criteria, reports by AAAs, the State Units on Aging, and the AoA stress numbers of participants, numbers of meals served, or numbers of older workers placed in jobs. Kutza (1991) views these “failures to be self-critical” (p. 67) as weakening the aging network. The reluctance to be self-critical, however, also reflects the maturity of the aging network, and the self-protective desire of agencies to ensure their continued funding and existence. Full-scale valid evaluations of aging network programs now confront an aging network less concerned about innovation than survival, particularly in a period of economic uncertainty. The dilemma of increased demands, but limited resources, may force an intensive reexamination of the effectiveness of programs, the simplification of access to important programs and services, and the development of programs designed to deal with some of the most difficult remaining problems, such as long-term care. These goals cannot be accomplished in a framework that views programs and services for the aged as separate from those for other populations. Social welfare advocates must unite in a framework that sees the needs of children, the aged, minority populations, and other groups as interrelated rather than competitive. A failure to bridge seeming differences in needs will mean continued competition for social welfare dollars—a competition that will eventually defeat the best intentions of all advocacy groups. As we close our final discussion related to challenges within the aging network and look to the future, it is important to consider issues that play a role across disciplines and have an impact on the aging network at every level. As the field of gerontology grows and the population of older adults continues to increase, the need for an educated workforce becomes a critical factor in our ability to provide a good old age for everyone in our society. We have made great strides in our programs, services,

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and educational opportunities for those interested in the aging of our society. In order to continue to add to our successes, we must also make room for those who have a background in gerontology, whether it is in the classroom, on the front lines, or developing policies and programs. That is our challenge. Dr. Butler in his book Why Survive: Growing Old in America asks, “Why study the elderly? Why spend research money on old people when there are compelling priorities for other age groups, particularly the young?” (p. 18). Butler puts forth many of his own compelling reasons but one stands out for our purposes, “. . . a greater understanding and control over the diseases and difficulties of later life would hopefully make old age less frightening and more acceptable as a truly valuable last phase of life. The relief of human suffering has merit in itself, but it also releases human beings from the fears and defenses they build up around it” (p. 19). With that in mind, one final challenge and related questions remain and we pose these to our colleagues in the field of gerontology: As suggested by our expert introduced in the introduction of this book, Kate de Medeiros (p. xxi), the most important thing that the aging network can do for the future is to integrate the objectivity of science with the longer perspective of history and the interpretative wisdom of the humanities.

We might address this by considering the following questions: B

B

B

How can policy and practice continue to support the health-care and social needs of older adults in a way that recognizes heterogeneity of individuals, despite the societal biases of various groups (including the elderly themselves); How can gerontological education at all levels—from elementary schools through doctoral programs—embrace the rich and complex history “old age” throughout the centuries to help rediscover and perhaps even redefine what it means to grow old; How can we move forward with scientific advances in gerontology research without privileging complex statistical models over individual experience?

REFERENCES Assisted living. (2005). Consumer Reports, 70(7), 28–33. Fortinsky, R. (1991). Coordinated, comprehensive community care and the Older Americans Act. Generations, 15, 39–42.

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Hudson, R., & Kingson, E. (1991). Inclusive and fair: The case for universality in social programs. Generations, 15, 51– 56. Kutza, E. (1991). The Older Americans Act of 2000: What should it be? Generations, 15, 65–68. Quirk, D. (1991). The aging network: An agenda for the nineties and beyond. Generations, 15, 23 –26.

Appendix A State Units on Aging (SUAs) Alabama Department of Senior Services http://www.adss.state.al.us Alaska Commission on Aging, Department of Health and Social Service http://www.alaskaaging.org Arizona Division of Aging and Adult Services https://www.azdes.gov/common.aspx?menu=36&menuc=28&id=190 Arkansas Division of Aging and Adult Services, Department of Human Services http://www.arkansas.gov/dhs/agingindex.html California Department of Aging http://www.aging.ca.gov Colorado Division of Aging and Adult Services, Department of Human Services http://www.cdhs.state.co.us/aas Connecticut Bureau of Aging Community & Social Work Services, Department of Social Services http://www.ct.gov/dss/site/default.asp Delaware Division of Services for Aging and Adults with Physical Disabilities, Department of Health and Social Services http://www.dhss.delaware.gov/dsaapd District of Columbia Office on Aging http://dcoa.dc.gov/dcoa/site/default.asp Florida Department of Elder Affairs http://elderaffairs.state.fl.us/index.php Georgia Division of Aging Services http://www.aging.dhr.georgia.gov Guam Division of Senior Citizens, Department of Public Health and Social Services http://www.dphss.guam.gov/about/senior_citizens.htm 225

226

Appendix A

Hawaii Executive Office on Aging http://hawaii.gov/health/eoa/index.html Idaho Commission on Aging http://www.idahoaging.com Illinois Department on Aging http://www.state.il.us/aging Indiana Division of Aging, Family and Social Services Administration http://www.indiana.gov/fssa/2329.htm Iowa Department on Aging http://www.state.ia.us/elderaffairs Kansas Department on Aging http://www.agingkansas.org Kentucky Department for Aging & Independent Living, Cabinet for Health & Family Services http://chfs.ky.gov/dail Louisiana Governor’s Office of Elderly Affairs http://goea.louisiana.gov/ Maine Office of Elder Services, Department of Health & Human Services http://www.maine.gov/dhhs/oes Maryland Department of Aging http://www.mdoa.state.md.us Massachusetts Executive Office of Elder Affairs http://www.mass.gov/?pageID=eldershomepage&L=1&L0=Home&sid= Eelders Michigan Office of Services to the Aging http://www.michigan.gov/miseniors Minnesota Board on Aging, Department of Human Services http://www.mnaging.org Mississippi Council on Aging, Division of Aging and Adult Services http://www.mdhs.state.ms.us/aas.html Missouri Division of Senior & Disability Services, Department of Health & Senior Services http://www.dhss.mo.gov/ Montana Office on Aging, Senior and Long Term Care Division, Department of Public Health and Human Services http://www.dphhs.mt.gov/sltc Nebraska Health & Human Services—State Unit on Aging http://www.hhs.state.ne.us/ags/agsindex.htm

Appendix A

227

Nevada Division for Aging and Disability Services, Department of Health & Human Services http://aging.state.nv.us New Hampshire Bureau of Elderly and Adult Services http://www.dhhs.state.nh.us/DHHS/BEAS/default.htm New Jersey Division of Aging & Community Services, Department of Health & Senior Services http://www.state.nj.us/health/senior New Mexico Aging and Long-Term Services Department http://www.nmaging.state.nm.us/ New York State Office for the Aging http://www.aging.ny.gov North Carolina Division of Aging & Adult Services, Department of Health and Human Services http://www.dhhs.state.nc.us/aging North Dakota Aging Services Division, Department of Human Services http://www.nd.gov/dhs/services/adultsaging Ohio Department of Aging http://aging.ohio.gov/home/ Oklahoma Aging Services Division, OK Department of Human Services http://www.okdhs.org/divisionsoffices/visd/asd/ Oregon Seniors and People with Disabilities, Department of Human Services http://www.oregon.gov/DHS/aboutdhs/structure/spd.shtml Pennsylvania Department of Aging http://www.aging.state.pa.us Puerto Rico Governor’s Office for Elderly Affairs http://www.gobierno.pr/OGAVE/Servicios/ProgramaEstatalAsistencia.htm Rhode Island Department of Elderly Affairs http://www.dea.state.ri.us American Samoa Territorial Administration on Aging http://americansamoa.gov/departments/agencies/taoa.htm South Carolina Bureau of Senior Services http://www.dhhs.state.sc.us/dhhsnew/seniors.asp South Dakota Office of Adult Services & Aging, Department of Social Services http://dss.sd.gov/elderlyservices

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Appendix A

Tennessee Commission on Aging and Disability http://www.tennessee.gov/comaging Texas Department of Aging & Disability Services http://www.dads.state.tx.us Virgin Islands Senior Citizen Affairs Administration http://www.dhs.gov.vi/seniors/index.html Utah Division of Aging & Adult Services, Department of Human Services http://www.hsdaas.utah.gov Vermont Department of Disabilities, Aging and Independent Living, Division of Aging and Disability Services http://dail.vermont.gov Virginia Department for the Aging http://www.vda.virginia.gov Washington Aging and Disability Services, Department of Social & Health Services http://www.aasa.dshs.wa.gov West Virginia Bureau of Senior Services http://www.wvseniorservices.gov/ Wisconsin Bureau of Aging and Disability Resources, Department of Health Services http://dhfs.wisconsin.gov/aging Wyoming Aging Division, Department of Health http://wdh.state.wy.us/aging/index.html

Appendix B Administration on Aging Regional Support Centers Region I

Connecticut, Massachusetts, Maine, New Hampshire, Rhode Island, Vermont Regional Office: Boston, MA 617-565-1158

Region II/III

Delaware, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia, Washington DC, Puerto Rico, Virgin Islands Regional Office: New York, NY 212-264-2976/2977

Region IV

Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee Regional Office: Atlanta, GA 404-562-7600

Region V

Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin Regional Office: Chicago, IL 312-353-3141

Region VI

Arkansas, Louisiana, Oklahoma, New Mexico, Texas Regional Office: Dallas, TX 214-767-2951

Region VII

Iowa, Kansas, Missouri, Nebraska Regional Offices: Kansas City, MO/Chicago, IL 312-353-3141

Region VIII

Colorado, Montana, Utah, Wyoming, North Dakota, South Dakota Regional Office: Denver, CO 303-844-2951

Region IX

Arizona, California, Nevada, Guam, CNMI (Mariana Islands), American Samoa Regional Office: San Francisco, CA 415-437-8780

Region XI

Alaska, Idaho, Oregon, Washington Regional Office: Seattle, WA 206-615-2298

229

Appendix C National Aging Network Organizations and Resources Organization

Website

Advocacy Organizations Alliance for Aging Research

www.agingresearch.org

Generations United

www.gu.org

Gray Panthers

www.graypanthers.org

National Asian Pacific Center on Aging

www.napca.org

National Council on the Aging

www.ncoa.org

The National Consumer Voice for Quality Long-Term Care (formerly National Citizens Coalition for Nursing Home Reform—NCCNHR)

www.theconsumervoice.org

National Committee to Preserve Social Security and Medicare

www.ncpssm

National Center on Creativity and Aging

www.creativeaging.org

National Gay and Lesbian Task Force

www.thetaskforce.org/issues/aging

National Hispanic Council on Aging

www.nhcoa.org

Asociacion Nacional Pro Personas Mayores

www.anppm.org

OWL—The Voice of Mid-life and Older Women

www.owl-national.org

SAGE Services & Advocacy for Gay, Lesbian, Bisexual and Transgender Elders

www.sageusa.org

Aging Network and Trade Associations American Association of Homes and Services for the Aging

www.aahsa.org

AARP

www.aarp.org

Alzheimer’s Association

www.alz.org

American Society of Aging

www.asaging.org (Continued)

231

232

Appendix C

Organization

Website

Aging and Disability Resource Center

www.adrc-tae.org

Association of Gerontology in Higher Education

www.aghe.org

Gerontological Society of America

www.geron.org

Leadership Council of Aging Organizations

www.lcao.org

National Adult Protective Services Foundation

www.apsnetwork.org

National Adult Day Services Association

www.nadsa.org

National Association of Area Agencies on Aging

www.n4a.org

National Association of State Units on Aging

www.nasua.org

National Caucus & Center on Black Aged

www.ncba-aged.org

Federal Resources Administration on Aging

www.aoa.gov

Center for Disease Control and Prevention

www.cdc.gov

Center for Medicare and Medicaid Services

www.cms.gov

Disability Information

www.disabilityinfo.gov

Corporation for National and Community Service

www.nationalservice.gov/

Federal Transit Administration

www.fta.dot.gov/

Department of Housing and Urban Development (HUD)

www.hud.gov

Employment and Training Administration/ Department of Labor

www.doleta.gov

Health Resources and Services Administration, Cultural Competence Resources for Health Care Providers

www.hrsa.gov/culturalcompetence/

Medicare

www.medicare.gov

National Institute on Aging

www.nia.gov

National Institute of Mental Health

www.nimh.nih.gov

National Women’s Health Information Center

www.womenshealth.gov

Department of Health and Human Services, Office of Minority Health

http://www.omhrc.gov/templates/ browse.aspx?lvl=1&lvlID=3

Social Security Administration

www.ssa.gov

Substance Abuse and Mental Health Services Administration

www.samhsa.hhs.gov

Veteran’s Administration

www.va.gov (Continued)

Appendix C

Organization

233

Website

Resources for the Aging Network AARP Public Policy Institute

www.aarp.org

Alzheimer’s Disease Education and Referral Center/NIA

www.nia.nih.gov/alzheimers

American Bar Association, Commission on Law and Aging

www.aba.org

Center for Retirement Research

http://crr.bc.edu

Compassion and Choices

www.compassionandchoices.org

Cultural Competence/HRSA

www.hrsa.gov/culturalcompetence/

Elder Economic Security Index Wider Opportunities for Women

www.wowonline.org

Intentional Communities

www.ic.org

Independent Transportation Network America

www.itnamerica.org

LGBT Aging Issues Network

www.asaging.org/networks/index. cfm?cg=LAIN

LGBT Aging Resources Clearinghouse

www.asaging.org/larc

National Academy on an Aging Society

www.agingsociety.org

National Academy of Social Insurance

www.nasi.org

National Adult Protective Services Foundation

www.apsnetwork.org

National Alliance for Caregiving

www.nac.org

National Center on Caregiving/Family Caregiver Association

www.fca.org

National Center for Cultural Competence

www11.georgetown.edu/research/ gucchd/nccc/

National Center on Senior Transportation

www.seniortransportation. easterseals.com

National Coalition for the Homeless

www.nationalhomeless.org

National Committee for the Prevention of Elder Abuse

www.preventelderabuse.org

National Center on Elder Abuse

www.ncea.org

National Hospice & Palliative Care Organization

www.nhpco.org

National Long Term Care Ombudsmen Resource Center

www.ltcombudsman.org

National Resource Center on Native American Aging

http://ruralhealth.und.edu/ projects/nrcnaa (Continued)

234

Appendix C

Organization

Website

National Senior Citizen Law Center

www.nsclc.org

Naturally Occurring Retirement Communities

www.norc.com www.norcblueprint.org

Network on Multicultural Aging

www.asaging.org/NOMA

Office of Minority Health/DHHS

www.omhrc.gov

ARCH National Respite Network

www.archrespite.org www.respitelocator.org

Urban Institute

www.urban.org

Women’s Institute for a Secure Retirement

www.wiserwomen.org

TOOLS FOR THE AGING NETWORK Consumer’s Tool Kit for Health Care Advance Planning http://www.abanet.org/aging/toolkit/ US Administration on Aging’s: A Toolkit for Serving Diverse Communities http://www.aoa.gov/AoARoot/AoA_Programs/Tools_Resources/ DOCS/AoA_DiversityToolkit_Full.pdf MedlinePlus Gay, Lesbian and Transgender Health Resources http://www.nlm.nih.gov/medlineplus/gaylesbianandtransgenderhealth.html Tools for Protecting Your Health Care Wishes http://www.lambdalegal.org/publications/take-the-power/ your-health-care-wishes.html Outing Age 2010: Public Policy Issues Affecting Lesbian, Gay, Bisexual and Transgender (LGBT) Elders http://www.thetaskforce.org/reports_and_research/outing_age_2010 Improving the Lives of LGBT Older Adults http://sageusa.org/uploads/Advancing Equality for LGBT Elders [FINAL COMPRESSED].pdf “Good to Go” Toolkit and Resource Guide www.compassionandchoices.org/g2g

Index

AAA. See Area agency on aging (AAA); Automobile Association of America (AAA) Abandonment, 166 Active Retirement Living, 126 Activities of daily living (ADL), 7, 84, 137 AD. See Alzheimer’s disease (AD) ADEA. See Age Discrimination in Employment Act (ADEA) ADL. See Activities of daily living (ADL) Administration on Aging (AoA), 3, 13, 27, 178, 200 –201 in elder abuse prevention, 168 Eldercare Locator funding, 31 OAA amendments, 71 regional support centers, 229 service components, 31 target populations, 72 toolkit, 202 website, 33, 168 Administrative advocacy, 208 Administrator-in-training (AIT), 122 ADRC. See Aging and Disability Resource Center (ADRC) ADSSP. See Alzheimer’s Disease Supportive Services Program (ADSSP) Adult day care. See Adult day services Adult day services, 35, 41 accreditation, 42 –43 family caregivers role, 43– 44 models, 42 NADSA report, 41–42

participants, 43 revenue sources, 42 work schedule, 44 Adult Protective Services (APS), 166 Advocacy, 206 activities, 210–212 family caregivers involvement, 207 groups, 208–210 organizational advocacies, 208 types, 206–207, 208 AFTA. See Arts for the Aging (AFTA) Age Discrimination in Employment Act (ADEA), 60 Age rating, 211 Agency for Healthcare Research and Quality (AHRQ), 91 Aging, 194 population, 38, 49, 215 I&R, 30–32 Aging and Disability Resource Center (ADRC), 14, 23 Aging in place, 8, 218 housing act programs, 103– 104 housing units development, 104 Aging network, 13, 18–19, 215. See also Older Americans Act (OAA) challenges, 19–20, 216, 219 changing cohorts, 218 coordination, 220 valid evaluations, 221 educated workforce, 221–222 increasing diversity, 216–217 organizations and resources, 231– 234 O’Shaughnessy’s view, 20 –22 professionalism, 218–219 235

236

Index

Aging network (cont.) provisions growth, 220 disaster planning, 182 –183 service developments, 220 –221 service philosophy, 18 tools for, 234 AHRQ. See Agency for Healthcare Research and Quality (AHRQ) AIT. See Administrator-in-training (AIT) ALA. See Assisted-living administration (ALA) ALF. See Assisted-living facilities (ALF) Alzheimer’s disease (AD), 35, 160 Alzheimer’s Disease Supportive Services Program (ADSSP), 92–93 American Community Survey, 144 American Psychological Association (APA), 87 American Recovery and Reinvestment Act (ARRA), 86 American Society on Aging (ASA), 158, 203 AoA. See Administration on Aging (AoA) APA. See American Psychological Association (APA) APS. See Adult Protective Services (APS) ARA. See Association of Retired Americans (ARA) Area agency on aging (AAA), 13, 31 future challenges, 22 –23 fund transfers, 49 ARRA. See American Recovery and Reinvestment Act (ARRA) Arts for the Aging (AFTA), 195 –196 ASA. See American Society on Aging (ASA) Assisted-living administration (ALA), 122

Assisted-living facilities (ALF), 119, 219 Assisted-living residences, 119 congregate housing, 120–121 instrumental activities, 120 regulations, 119–120, 121 sheltered housing, 121 Yee-Melichar’s view, 122–123 Association of Retired Americans (ARA), 209 Automobile Association of America (AAA), 158

Baby boomers, 3, 198 aging of, 60, 173 in RSVP, 72 Baltimore County Department of Aging, 39 Beverly Foundation (BF), 156 STAR Awards, 156–157 BF. See Beverly Foundation (BF) Bioterrorism and Emergency Preparedness in Aging (BTEPA), 182 BLS. See Bureau of Labor Statistics (BLS) Board and care homes, 124–125 domiciliaries, 126 regulations, 125 residents’ medical care, 125–126 Brooke Amendment, 104 BTEPA. See Bioterrorism and Emergency Preparedness in Aging (BTEPA) Bureau of Labor Statistics (BLS), 4 Butler, Robert, 215, 222

California Lutheran Homes Center (CLH Center), 205 certificate in spirituality and gerontology, 206 EMC, 206

Index

CANE-UD. See University of Delaware Center for Community Research and Service (CANE-UD) Caregivers, 136 employed, 140 –141 family, 135 long-distance, 141 needs, 138 percentage of, 137 CARF. See Commission on the Accreditation of Rehabilitation Facilities (CARF) Cash and Counseling, 83 CDBG. See Community Development Block Grant (CDBG) CDC. See Centers for Disease Control and Prevention (CDC) CDSMP. See Chronic Disease Self Management Programs (CDSMP) Center for Elder Rights Advocacy (CERA), 170 Center for Elders and Youth in the Arts (CEYA), 196 Center for Social Gerontology (TCSG), 170 Centers for Disease Control and Prevention (CDC), 91, 178, 181 Centers for Medicare and Medicaid Services (CMS), 19, 33, 91 CERA. See Center for Elder Rights Advocacy (CERA) CEYA. See Center for Elders and Youth in the Arts (CEYA) Chronic disease, 78 Chronic Disease Self Management Programs (CDSMP), 16, 86 Civic engagement, 70, 71. See also Volunteerism amendments, 71 legislation, 71 RSVP, 72 –73

237

SCORE, 73 –74 SCP, 73 CLASS Act. See Community living assistance services and supports Act (CLASS Act) CLH Center. See California Lutheran Homes Center (CLH Center) CMS. See Centers for Medicare and Medicaid Services (CMS) CNCS. See Corporation for National and Community Service (CNCS) Cohen, Gene, 194 Collective advocacy, 207 Commission on the Accreditation of Rehabilitation Facilities (CARF), 42 Community colleges, 187 retirement programs, 190 for older adults, 187–188 Community Development Block Grant (CDBG), 114– 115 Community living assistance services and supports Act (CLASS Act), 85 Community Mental Health Centers Act, 90 primary prevention, 91 services, 90– 91 Community Transportation Association of America (CTAA), 158 Congregate housing, 120 authorization, 121 growth in, 121 Congregate meal program, 44 demonstration projects, 46 eligible participants, 47 history, 45–46 issues, 48 –49 meal sites, 47 OAA nutrition program, 44–45 participation encouragement, 48 programming, 47–48

238

Index

Congregate nutrition services, 45 Consortia. See Aging and Disability Resource Center (ADRC) Continuing care retirement communities. See Life care communities Continuity of operations plan (COOP), 183 COOP. See Continuity of operations plan (COOP) Corporation for National and Community Service (CNCS), 71 Creative aging, 194 Creativity, 194 and aging study, 196 Encore, 196 key aspects, 194 CTAA. See Community Transportation Association of America (CTAA)

Defined benefit pension plans, 55 Defined contribution plan, 55 Demand-responsive system, 150 Department of Health and Human Services (DHSS), 85, 178 Department of Housing and Urban Development (HUD), 19 contracts, 106 funding, 104 –105 DHSS. See Department of Health and Human Services (DHSS) Disaster planning and community response, 178 aging network role, 182 –183 elders needs, 182 FEMA recommendations, 181– 182 Nelson’s comments, 183 –185 preparedness domains, 182 Disaster, 177, 180 cycle phases, 178 –179 direct and indirect effects, 180

nursing homes preparations, 179–180 older persons experience, 179 preparedness, 177, 179 Disease prevention and health promotion services, 15 Diversity, 198 AoA tools, 202–203 federal resources, 201– 202 LGBT community analysis, 198–200 racial and ethnic, 6 Donut hole, 81 Dundalk Community College, 187–188 Durable power of attorney, 171 Dwyer, Robert, 20

ECFs. See Extended care facilities (ECFs) ECHO. See Elder Cottage Housing Opportunities (ECHO) Economic well-being, 58 EEOC. See Equal Employment Opportunity Commission (EEOC) EESS. See Elder Economic Security Standard (EESS) EJA. See Elder Justice Act (EJA) Elder abuse, 166, 168 durable power of attorney, 167 financial abuse, 167 prevalence, 166 self-neglect, 167 Elder abuse prevention, 168 AoA website, 168 NAPSA with NCEA, 169 NCEA, 168– 169 Nerenberg’s comments, 173–174 Elder Cottage Housing Opportunities (ECHO), 130 Elder Economic Security Standard (EESS), 58 Bruce’s insights, 58 –59

Index

Elder Justice Act (EJA), 17, 165, 170 Blancato’s supplement, 170– 171 provisions, 171 Elder Law, 171 attorneys, 171, 172 Frank’s comments, 172 legal issues management, 171 Elder Ministry in the Congregation (EMC), 206 Elder rights protection activities, 17 programs, 26, 167 Eldercare Locator, 31, 32, 142 AAA system’s contribution, 32–33 website usage, 33 Elderhostel. See Road Scholar Elders Share the Arts (ESTA), 196 EMC. See Elder Ministry in the Congregation (EMC) Emergencies, 180 heat waves, 180 –181 Silver Alerts, 181 Employed caregiver, 140 –141. See also Family caregiver; Long-distance caregiver family-friendly employers, 141 Hunt’s perspective, 142– 143 work schedule, 44 workplace flexibility, 141 Employee Retirement Income Security Act (ERISA), 55 Encore creativity, 196 Environmental Protection Agency (EPA), 61 EPA. See Environmental Protection Agency (EPA) Equal Employment Opportunity Commission (EEOC), 60 ERISA. See Employee Retirement Income Security Act (ERISA) ESTA. See Elders Share the Arts (ESTA)

239

Evidence-based programming for community depression program, 91 cooperative agreements to serve AD people, 92–93 for disease and disability, 91 treatment for depression, 92 Experience Corps, 74 Extended care facilities (ECFs), 118

Faith and Service Technical Education Network (FASTEN), 205 Family caregiver, 43, 135. See also Employed caregiver; Long-distance caregiver ADL, 137 Hunt’s perspective, 142–143 instrumental services, 137 involved in advocacy, 207 needs, 136–137 services, 15 Family-friendly employers, 141 FASTEN. See Faith and Service Technical Education Network (FASTEN) Father of creative aging. See Cohen, Gene Federal Emergency Management Association (FEMA), 178, 181–182 Federal Housing Administration (FHA), 103 FEMA. See Federal Emergency Management Association (FEMA) FHA. See Federal Housing Administration (FHA) Financial abuse, 167 Fiscal Year (FY), 17 401(k) plan, 55 Friedsam, Hiram, 177–178 FY. See Fiscal Year (FY)

240

Index

GAO. See U.S. General Accounting Office (GAO) GCM. See Geriatric Care Managers (GCM) GDP. See Gross domestic product (GDP) Geriatric Care Managers (GCM), 28 Geriatric mental health, 87, 88– 89 GPE. See Graduate Psychology Education (GPE) Graduate Psychology Education (GPE), 87 Grandparents, 145 Kinchen’s view, 145 NFCSP requirement, 144 responsibility, 144 Granny dumping, 166 –167 Gray Panthers, 208 Green House Project, 124 Gross domestic product (GDP), 81

HOPE. See Home Ownership and Opportunity for People Everywhere (HOPE) Housing, 101 assisted, 121 certificate program, 130 congregate, 120–121 household statistics, 102 North’s key components, 101–102 public, 104–105 rental, 108 Sharlach’s principles, 101 Housing and Community Development Act, 104 Housing services, 112 amenities, 112–113 service-delivery system, 113 Worly Terrace, 113 HUD. See Department of Housing and Urban Development (HUD)

Health Maintenance Organization (HMO), 80 Health promotion, evidenced-based, 86 CDSMP purpose, 86 Medicare influence, 86 Healthy IDEAS, 91 HMO. See Health Maintenance Organization (HMO) HOME Investment Partnership, 111 Home Ownership and Opportunity for People Everywhere (HOPE), 111 –112 Home repair program, 114 funding issue, 114 –115 in Evansville, 114 Home-delivered meals, 45, 138 AoA-funded program, 139 authorization, 140 connections importance, 140 early models, 139 Meals on Wheels, 139 primary function, 140

I&R. See Information and referral (I&R) IADL. See Instrumental Activities of Daily Living (IADL) ICFs. See Intermediate care facilities (ICFs) Information and referral (I&R), 29 age-integrated vs. aging network, 32 Eldercare Locator development, 31–32 factors, 29– 30 history, 30 outreach programs, 30–31 service, 29, 31 Innovative programming, 205–206 AFTA, 195– 196 Encore creativity, 196 NCCA, 194–195 Stagebridge Senior Theatre, 197–198 Institutional settings almshouses, 115–116 development, 116– 117

Index

emergence of nursing home, 116 long-term care facilities, 115 Instrumental Activities of Daily Living (IADL), 7, 84, 120, 137 Integrated health care, 86–89 Intermediate care facilities (ICFs), 118 Issue advocacy, 208 Issue attention cycle, 183 discovery stage, 183 –184 declining interest stage, 184 awareness stage, 184 post problem stage, 184 pre-problem stage, 183

Job Training Partnership Act (JTPA), 62 JTPA. See Job Training Partnership Act (JTPA)

Key federal agencies, 178

Learning in Retirement Programs, 190 Legal advocacy, 208 Legal assistance, 169 –170 Leisure World, 127 Lesbian, gay, bisexual, and transgendered community (LGBT community), 198 activity analysis, 198 –199 AoA involvement, 200 –201 Older Californians Equality and Protection Act, 199 Presidential memorandum, 200 prevalence, 200 public policy effect, 202 SAGE for, 198, 200 social network, 199 Lesbian, gay, bisexual, transgender, questioning and intersex (LGBTQI), 203 Lesbian and Gay Aging Issues Network (LGAIN), 203

241

LGAIN. See Lesbian and Gay Aging Issues Network (LGAIN) LGBT community. See Lesbian, gay, bisexual, and transgendered community (LGBT community) LGBTQI. See Lesbian, gay, bisexual, transgender, questioning and intersex (LGBTQI) Life care communities, 128, 129 Lifespan Respite Care Program, 146 in Oregon, 146–147 funding, 146 respite services, 146 Long-distance caregiver, 141. See also Employed caregiver; Family caregiver difficulties, 141 Eldercare Locator use, 142 national survey, 141–142 Long-term care administration (LTCA), 122 Long-Term Care Ombudsman program, 169 Long-term care programs, 84 age issue, 118 basic activities, 84 CLASS Act, 85 facilities types, 118 home and community-based, 26 instrumental activities, 84 nursing homes development, 117– 118 population estimation, 84 Long-term support and services (LTSS), 172 LTCA. See Long-term care administration (LTCA) LTSS. See Long-term support and services (LTSS)

Mass casualty disaster planning (MCDP), 183 MCDP. See Mass casualty disaster planning (MCDP)

242

Index

Meals on Wheels, 139 Medicaid, 11, 82, 83. See also Medicare funds, 83, 113, 117 legislation specification, 155 self-directed service program, 83 waiver programs development, 83 Year of Community Living initiative, 83 Medical model, 42 Medicare, 80. See also Medicaid benefits, 84 donut hole, 81 enacting, 11 expenses, 82 funding sources, 117 out-of-pocket spending, 82 prevention activities, 86 programs, 80 Mental health programs. See also Evidence-based programming APA recommendations, 87 funding, 93 –94 geriatric, 87, 88 –89 Healthy IDEAS, 91 history of community, 89– 90 Integrated health care, 86 –89 Pearls Program, 91–92 Mitigation phase, 179

N4A. See National Area Agencies on Aging Association (N4A) NAC. See National Alliance for Caregiving (NAC) NAC/AARP national survey, 137 caregivers, 137, 138, 140 –141 NFCSP, 138 NADSA. See National Adult Day Services Association (NADSA) NAPSA. See National Adult Protective Service Association (NAPSA)

NASUA. See National Association of State Units on Aging (NASUA) National Adult Day Services Association (NADSA), 41 report, 42 voluntary system development, 42 National Adult Protective Service Association (NAPSA), 169 National Affordable Housing Act, 105, 111 HOME Investment Partnership, 111 HOPE, 111–112 National Alliance for Caregiving (NAC), 135 National Area Agencies on Aging Association (N4A), 32, 157, 209 National Association of State Units on Aging (NASUA), 32, 157–158, 181 National Center for Creative Aging, 210 National Center for Cultural Competence (NCCC), 201 National Center on Creativity and Aging (NCCA), 194–195 National Center on Elder Abuse (NCEA), 168, 169 National Center on Health Statistics (NCHS), 4 National Center on Senior Transportation, 157 funding, 158 members, 157–158 National Consumer’s Voice for Quality Long-Term Care (NCCNHR), 169 National Council of Senior Citizens (NCSC), 207 National Council on the Aging (NCOA), 36, 72, 207 caregivers survey, 141–142 collective advocacy, 207

Index

National Family Caregiving Support Program (NFCSP), 14, 26, 138, 144 funding for caregivers, 135 monies allocation, 136 National Gay and Lesbian Task Force, 202 National Housing Act, 103 Section 8, 104, 105 –108 Section 202, 103, 108– 109 Section 223(f), 111 Section 231, 110– 111 target population, 110 National Institute of Mental Health (NIMH), 88 National Institute of Senior Centers (NISC), 36, 39, 218 National Long-Term Care Ombudsman Resource Center, 169 National Mental Health Association, 94 Naturally Occurring Retirement Communities (NORCs), 129 NCCA. See National Center on Creativity and Aging (NCCA) NCCC. See National Center for Cultural Competence (NCCC) NCCNHR. See National Consumer’s Voice for Quality Long-Term Care (NCCNHR) NCEA. See National Center on Elder Abuse (NCEA) NCHS. See National Center on Health Statistics (NCHS) NCOA. See National Council on the Aging (NCOA) NCSC. See National Council of Senior Citizens (NCSC) Need-responsive system, 150 Network of multicultural aging (NOMA), 203 New ventures in leadership (NVL), 203

243

New York University Counseling and Support Intervention (NYUCI), 93 NFCSP. See National Family Caregiving Support Program (NFCSP) NHA. See Nursing-home administration (NHA) NIMH. See National Institute of Mental Health (NIMH) NISC. See National Institute of Senior Centers (NISC) NOMA. See Network of multicultural aging (NOMA) NORCs. See Naturally Occurring Retirement Communities (NORCs) NSIP. See Nutrition Services Incentive Program (NSIP) Nursing-home administration (NHA), 122 Nutrition Services, 15 congregate, 45 Nutrition Services Incentive Program (NSIP), 44, 45 NVL. See New ventures in leadership (NVL) NYUCI. See New York University Counseling and Support Intervention (NYUCI)

OAA. See Older Americans Act (OAA) Oasis Institute, 189–190 OECD. See Organisation for Economic Co-operation and Development (OECD) Office of Minority Health (OMH), 201 Old-age assistance program, 52 Older adults, 9, 69, 77, 83, 136, 167. See also Older Americans community colleges for, 187–188 educational program future, 190 Encore creativity, 196

244

Index

Older adults (cont.) Learning in Retirement Programs, 190 long-term care, 84 Medicaid, 82– 83 Medicare, 80– 81 Oasis, 189 –190 PACE, 84 –85 Road Scholar programs, 189 services under NFCSP, 136 university programs, 188 Older Americans, 3, 18, 29, 82, 177. See also Older workers chronic conditions, 7 cultural backgrounds, 6 demographic information, 4 economic security future, 59 educational background, 8–9 employment, 9, 65 –66 facilities for, 27 health status, 77 –79 health-care costs, 82 income security, 57–58 life expectancy, 5 living arrangements, 7– 8, 215 mental health, 87 –93 oldest population, 5–6 population growth, 4–5 programs, 26 racial and ethnic populations, 6 services, 27, 135 understanding, 3 Older Americans Act (OAA), 3 –4, 11, 62, 165. See also Aging network aging network, 13 amendments, 14, 36, 71, 139 abuse prevention, 168 –169 rights protection activities, 17 funds, 15–17 legal assistance, 169– 170 legislations, 11 nutrition programs, 44

objectives, 12 –13 ombudsman program, 169 service areas, 15 Title III, 15 Title IV, 15–16 Title V, 16, 60 Title VII, 17, 165 transportation services, 149 Older Californians Equality and Protection Act, 199 Older drivers, 158 accident rates, 149–150 Drive Wise, 158 driving assessments, 158 GAO report, 158–159 safety projects, 158 Silverstein’s on, 159–160 Older Woman’s League (OWL), 208–209, 210 age rating, 211 agenda, 210–211 Social Security, 211 using web, 212 Older workers, 56, 60, 65. See also Older Americans EPA-based program, 61 Hirshorn’s recommendations, 62–65 SCSEP, 60 –61 SEE program, 61 TAA programs, 62 WIA, 61 –62 OMH. See Office of Minority Health (OMH) Organisation for Economic Co-operation and Development (OECD), 57 O’Shaughnessy, Carol, 20 Osher Lifelong Learning Institutes, 190 OWL. See Older Woman’s League (OWL)

Index

PACE. See Program for all-inclusive care for elders (PACE) Patient protection and affordable care act (PPACA), 79 highlights, 79 Medicare, 80– 81 PBGC. See Pension Benefit Guaranty Corporation (PBGC) Pearls Program, 91–92 Pension Benefit Guaranty Corporation (PBGC), 55 Pensions, 54 benefit plans, 55 federal government’s role, 55 401(k) plan, 55 gender role, 56 retirement coverage, 55 Personal savings, 56 Pew Forum on Religion and Public Life, 205 PGCM. See Professional Geriatric Care Managers (PGCM) Post-traumatic stress disorder (PTSD), 180 PPACA. See Patient protection and affordable care act (PPACA) PPO. See Preferred Provider Organization (PPO) Preferred Provider Organization (PPO), 80 Primary caregiver, 136 Productive aging, 69 Professional Geriatric Care Managers (PGCM), 28 Program advocacy, 208 Program for all-inclusive care for elders (PACE), 84– 85 Progressive liberalization, 52 PTSD. See Post-traumatic stress disorder (PTSD)

245

Public housing, 104. See also Housing difficulties of older persons, 105 HUD funding, 104–105 National Affordable Housing Act, 105

Recovery phase, 179 Red Cross, 178 Rental housing, 108 Reserve-A-Ride system, 154 Response phase, 179 Retired Senior Volunteers Program (RSVP), 71, 72 community services, 72–73 Retirement communities, 126 Active Retirement Living, 126 characteristics, 126–127 financial aspects, 128– 129 growth, 128 Leisure World, 127 life care communities, 128 security importance, 127 Ride-On network, 155 Ridership problems, 154–155 Ripple effect, 114 Road Scholar, 189 Roundtable site, 205 RSVP. See Retired Senior Volunteers Program (RSVP)

SAGE. See Services and Advocacy for LGBT Elders (SAGE) SAMSHA. See Substance Abuse and Mental Health Services Administration (SAMSHA) SCORE. See Service Corps of Retired Executives (SCORE) SCP. See Senior Companions Program (SCP)

246

Index

SCSEP. See Senior Community Service Employment Program (SCSEP) SEE. See Senior Environmental Employment (SEE) Self-advocate, 206, 207 Self-directed service, 83 Self-neglect, 167 Senior centers, 35 accreditation process, 39 challenges, 39 –41 characteristics, 37 development, 36 as focal points, 36, 37 models, 37 multipurpose, 37 OAA amendments, 36 recruitment and service, 38 single purpose, 37– 38 Senior Community Service Employment Program (SCSEP), 16, 60, 66 management, 61 older workers enrollment, 62 Senior Companions Program (SCP), 71, 73 Senior Environmental Employment (SEE), 61 SEOC. See Serving Elders of Color (SEOC) SERVE. See Serve and Enrich Retirement by Volunteer Experience (SERVE) Serve and Enrich Retirement by Volunteer Experience (SERVE), 72 Service Corps of Retired Executives (SCORE), 71, 73 –74 Services and Advocacy for LGBT Elders (SAGE), 198– 199, 201 policy recommendations, 200 Serving Elders of Color (SEOC), 203 Sheltered housing, 121

SHIP. See State Health Insurance Assistance Program (SHIP) Silent saviors. See Grandparents Silver Alerts, 181 Skilled nursing facilities, 123 characterization, 124 Green House Project, 124 quality of care, 123–124 special-care units, 124 Skipped generation grandfamilies, 144 Social model, 42 Social Security, 9, 52, 53 benefits, 53 OWL involvement, 211 programs, 52–53, 54 replacement rate, 57–58 website features, 33 Social Security Act (SSA), 51 Old-Age Benefit Program, 52 progressive liberalization, 52 prohibitions, 116 Social service agency model, 37 Specialized service model, 42 Spirituality and religion, 203–204 EO section 1 policy, 204 organizations, 205 programming, 205–206 SSA. See Social Security Act (SSA) SSI. See Supplemental Security Income (SSI) Stagebridge Senior Theatre, 197 acting programs, 198 intergenerational programs, 197 school programs, 197 STAR Senior Transportation Service Award program, 156 BF awards, 156 STAR awards, 156–157 survey database information, 157 State Health Insurance Assistance Program (SHIP), 87 State Units on Aging (SUA), 225–228

Index

STP. See Supplemental Transportation Program (STP) SUA. See State Units on Aging (SUA) Subsidized rent. See National Housing Act—Section 8 Substance Abuse and Mental Health Services Administration (SAMSHA), 88 Supplemental Security Income (SSI), 9, 52–53 Supplemental services, 136 Supplemental Transportation Program (STP), 157 Supportive services, 15, 108 –109

TAC. See Technical Assistance Center (TAC) Taxicab service, shared, 154 TCSG. See Center for Social Gerontology (TCSG) Technical Assistance Center (TAC), 88 Third-party citizen advocate, 207 Three-legged stool, 52 pensions, 54 –56 personal savings, 56 social security, 52–54 work, 56 –57 Trade Adjustment Assistance Programs (TAA Programs) Transportation system coordination, 155 –156 development, 153 fixed-route and schedule services, 153–154 future trends, 161– 162 mass transit systems, 151 –152 Medicaid legislation, 155 models, 151 older drivers problems, 149 –150 proliferation indication, 155 regulations, 152 Reserve-A-Ride system, 154

247

responsive systems, 150–151 services, 149 UMTA, 152 211 service, 31, 32

U.S. General Accounting Office (GAO), 62 older drivers analysis, 150, 158 UMTA. See Urban Mass Transportation Act (UMTA) United States Housing Act, 103 University of Delaware Center for Community Research and Service (CANE-UD), 168 Urban Mass Transportation Act (UMTA), 152

VCU. See Virginia Commonwealth University (VCU) Virginia Commonwealth University (VCU), 189 Visor Cards, 168 Voluntary model, 37 Volunteering, 69, 70 older adults, 69 religious community, 69 Volunteerism, 70 high-intensity program, 70 volunteer opportunities, 70, 71

Weather-related events, 180–181 Web, 33–34 WHO. See World Health Organization (WHO) WIA. See Workforce Investment Act (WIA) WIB. See Workforce Investment Board (WIB) Wider Opportunities for Women (WOW), 58

248

Index

Workforce Investment Act (WIA), 61–62, 63 Workforce Investment Board (WIB), 62, 63 Working through retirement labor force participation, 56 older worker’s inability, 57 Workplace accommodations, 141

World Health Organization (WHO), 94 Worly Terrace, 113 WOW. See Wider Opportunities for Women (WOW)

Year of Community Living, 83