Public Administration, Health and Human Services R Public Administration a Public Administration and Disability: Community Services Administration in c the US is the first academic book to describe comparative service systems related to i n the community and disability fields. Based on evidence-based research and technical o assistance, the book discusses the leading efforts of over four decades in the field of and Disability disability and community services. The book highlights the development of community service systems in the US, underlining the importance of deinstitutionalization, family P and community support, user-directed and consumer-controlled services, community u integration and inclusion, and universal and barrier-free design movements. b Community Services Administration in the US A university and college primer in disability fields and community services l administration, the book covers: i c • Theories of community and disability • Leadership and history of community services development A • Long-term support services (LTSS) in the US d • Family support services, theories and studies m • Housing and inclusive, sustainable communities • Employment, Americans with Disabilities Act, and programs i • Comparative categorical systems at the state level n • Community services at the city and county levels i s • Contemporary administrative issues and independent living t • Public and individual budgeting/community financing r • Contemporary US support workforce a • Intergovernmental relations of disability NGOs t • Disability public policy and policy research i • International agendas in inclusion in the global context o • Worldwide disability and aging futures n • Future of public administration and disability a The book reviews over four decades of research and summarizes the status of community n services administration in the US. It describes models and theories of disability (e.g., d social role valorization, universal design), long-term services and supports (LTSS) in communities, comparative community service systems and exemplary services, D contemporary administrative areas (e.g., personnel management systems), the national policy research and international human rights agendas (UN Convention on the Rights i of Persons with Disabilities), and the future of public administration, disability, and s community in the global context. It provides a point for new generations to consider a what the disability fields “can deliver” in the context of transparent government and b what can be done to realize the future of individual and families in communities in the i twenty-first century. l i t K16866 y 6000 Broken Sound Parkway, NW Julie Ann Racino Suite 300, Boca Raton, FL 33487 ISBN: 978-1-4665-7981-1 711 Third Avenue 90000 New York, NY 10017 an informa business 2 Park Square, Milton Park www.crcpress.com Abingdon, Oxon OX14 4RN, UK 9 781466 579811 w w w . c r c p r e s s . c o m K16866 cvr mech.indd 1 10/20/14 12:39 PM Public Administration and Disability Community Services Administration in the US Julie Ann Racino CRC Press Taylor & Francis Group 6000 Broken Sound Parkway NW, Suite 300 Boca Raton, FL 33487-2742 © 2015 by Taylor & Francis Group, LLC CRC Press is an imprint of Taylor & Francis Group, an Informa business No claim to original U.S. Government works Version Date: 20141105 International Standard Book Number-13: 978-1-4665-7982-8 (eBook - PDF) This book contains information obtained from authentic and highly regarded sources. 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Pratt of Transitional Living Services of Onondaga County, Inc. and ENABLE of Syracuse, New York and to Support workers, supportive administrations, the families and the people we serve. Contents Preface ...........................................................................................................vii Acknowledgments .........................................................................................xv Editor and Author ........................................................................................xix Contributors .................................................................................................xxi SeCtion i intRoDUCtion 1 Public Administration, Disability, and Community Services ................3 JULIE ANN RACINO 2 Brief History of Civil Rights Movement, Disability, and Deinstitutionalization ..........................................................................23 JULIE ANN RACINO 3 Administrative Leadership in Community Services ............................41 JULIE ANN RACINO 4 Long-Term Community Services and Support in the US .....................65 JULIE ANN RACINO SeCtion ii CoMMUnitY SeRViCeS 5 Family Support, Family Studies, and Community Services ...............101 JULIE ANN RACINO 6 Housing and Disability: Toward Inclusive, Sustainable, and Equitable Communities ......................................................................123 JULIE ANN RACINO 7 Employment and Adult Day Programs in the US ...............................157 JULIE ANN RACINO v vi ◾ Contents SeCtion iii CoMMUnitY SeRViCe SYSteMS in tHe US 8 Comparative Community Service Systems of States: Categorical Service Systems ...............................................................181 JULIE ANN RACINO 9 Public and Individual Budgeting and Financing ...............................209 JULIE ANN RACINO 10 Community Support Services Workforce in the US ...........................235 SHERYL A. LARSON, LORI SEDLEZKY, AMY HEWITT, AND CARRIE BLAKEWAY SeCtion iV inteRnAtionAL AnD nAtionAL DeVeLoPMent 11 Disability Policy Research in Community Services and Public Policy .......................................................................................257 JULIE ANN RACINO 12 International Agenda on Disability and Human Rights ....................279 STEVEN E. BROWN SeCtion V ConCLUSion 13 Future of Public Administration and Disability ................................297 JULIE ANN RACINO Bibliography ................................................................................................321 Preface Public Administration and Disability: Community Services Administration in the US was conceived as a companion book to Public Health and Disability (Drum, Krahn, & Bersani 2009) co-edited by community integration colleague Dr. Henry J. Bersani, Jr. who was tragically killed in a bicycle accident in March 2012 in Oregon. Similar to colleagues at the Center on Human Policy, Syracuse University, Hank Bersani was committed to making the 1979 Community Imperative reality, refuting all arguments for institutionalization. Our colleague, Michael Kennedy, who had lived in three state institutions, spoke before community groups in the US, and testified at hearings in the 1980s and 1990s, including before state offices and Congress (Biklen & Knoll 1987). In 2012, the US had public institution– free states (Smith & Lakin 1999; Shoultz et al. 2005) and according to Inclusion International, the United Nations is committed to the closing of all institutions worldwide (United Nations Convention on the Rights of Persons with Disabilities, Article 19, 2006). This editor was honored to work with the leaders of the independent living move- ment, particularly Ed Roberts, Judith Heumann, Steve Brown, Simi Litvak and Hale Zukas of the World Institute on Disability of Berkeley, then Oakland, California and later Devva Kasnitz, Lance Egley, and Joan Leon, among others. Through the Rehabilitation Research and Training Centers (RRTCs) on Public Policy and Independent Living and the RRTC on Personal Assistance Services, these centers advocated internationally for user-controlled personal assistance services (Litvak, Zukas, & Heumann 1987; Weissman, Kennedy, & Litvak 1991; Litvak & Racino 1993/9; now, self-directed services Centers for Medicaid and Medicare 2011c) for all populations and ethnic groups. Concurrently, the Center on Human Policy through its RRTC on Community Integration (10 years) and School of Education called for the revision of community services systems for those with the most signifi- cant disabilities (Taylor, Racino, Knoll, & Lutfiyya 1987; Taylor, Bogdan & Racino 1991) as part of its social inclusion, communication, competency, disability, and community studies (Biklen 2011; see Chapter 11). Beginning in the 1940s, anthropologist Nora Groce (1992) documented the international growth of disability rights, with the international access symbol vii viii ◾ Preface commonly found in signs and placards denoting accommodations having been made for those with disabilities (1969), international advocacy for self-deter- mination, the parent and consumer movements, and “consumer entitlement” (1950s). Indeed, long-term Center friends Rosemary and Gunnar Dybwad then of Brandeis University were cited (p. 66) as early executive directors of the now Arc of the US and president of the International League of Societies for the Mentally Handicapped (now Inclusion International). Gunnar always remained a strong supporter of choice and self-determination (see also, Dybwad & Bersani 1996, including Shoultz & Ward 1996) and is reported to have advised eight US presi- dents (Colby 2009). Hank Bersani edited a book in honor of Gunnar Dybwad with disability advocates and authors Robert Perske, Douglas Biklen, Stanley Herr, Peter Mittler, Ann Shearer, Michael Kennedy, Rannveig Traustadottir, and Zana Lutfiyya, among others (Bersani 1999). By 2003, self-determination theory remained at the forefront in the US (Wehmeyer, Mithaug, Abery & Stancliffe 2003) based on work at the early RRTCS on Family and Community Living (Abery in Hayden & Abery 1994). The histories of the community service systems and of people with disabilities have been well documented, including deaf community organizing, independent living movement/Disabled in Action, parent organizing, eugenics, ADAPT, dein- stitutionalization, Disabled People’s International, health care financing, and insti- tutional histories in volumes over the past decades (Burch 2009; Driedger 1989; Longmore 1987; Taylor & Searl 1987; Braddock & Parish 2001; Crocker 1999; Heumann Nd; Schereenberger 1987; Ferguson 2009; Shapiro, 1993; see Chapter 2). This editor’s brief history of the development of community services systems in the US, as illustrated by the timeline on the state of New Hampshire (intellectual and developmental disabilities), includes formation of parent groups, prior to 1975; federal PL 94-142 (Education for All Handicapped Children Act, 1975); state pro- tection and advocacy agency, 1978; major class action lawsuit on institution-based service system, 1981; area agencies (statewide structures) established 1979; the state’s only independent living center, 1980; state early intervention/ developmental dis- abilities council, 1983; New Hampshire Home and Community-based Medicaid Services Waiver, 1983; Special Families United, 1984; Institute on Disability, University of New Hampshire opens, 1987; state family support task force report, 1988; first statewide self-advocacy conference, 1990; and historic closure of Laconia State School, first public institution–free state, 1991) (Racino 2002b). The community “disability” systems of the 20th century (part of long-term care systems in the US) were originally “built” in large part in the 1970s, through advocacy by parents, community initiatives, university development, and federal/ local/state planning with a framing role of the federal National Institute on Mental Health (Caplan 1974, Turner & Shifren 1979; Chapter 2). The late 1980s marked a new resurgence in strategic planning, technical assistance, and change efforts to move from institutional, facility-based models to a return to the grassroots concepts of home, family, employment, and community living (Turnbull, Horner, & Racino