Policy, Program Evaluation, and Research in Disability: Community Support for All

by Racino; Julie Ann

• ISBN13: 9780789005984
• ISBN10: 0789005980
• Edition: 1st
• Format: Nonspecific Binding
• Copyright: 1999-09-24
• Publisher: Routledge

Summary

Policy, Program Evaluation, and Research in Disability: Community Support for All is an essential research reference on how community support systems can greatly assist people with diverse disabilities to live fuller lives outside of institutions. Based on qualitative research methods, Policy, Program Evaluation, and Research in Disability reflects over a decade of technical assistance and research in state, regional, and local communities throughout the United States. Community service managers, policy makers, researchers, activists, individuals with disabilities, and their families will benefit from the numerous studies that promote a better quality of life for those living with disabilities.

Author Biography

Julie Ann Racino, MAPA, is Principal and President of Community and Policy Studies in Rome, New York. She has served as Associate and Deputy Director of the National Research and Training Center and its related national, state, and local projects at the Center on Human Policy at Syracuse University. Ms. Racino is a graduate of Cornell University and the Maxwell School of International and Public Affairs at Syracuse University.

Table of Contents

About the Author	xv
Contributors	xvii
Foreword	xix
Paul Wehman
Preface	xxi
Julie Ann Racino
Acknowledgments	xxiii
PART I: INTRODUCTION
Qualitative Evaluation and Research: Toward Community Support for All	3	(28)
Julie Ann Racino
Introduction	3	(4)
Evaluation Research Principles and Directions	7	(4)
Policy Analysis and Evaluation Research	11	(9)
The Format of the Book	20	(5)
PART II: COMMUNITY INTEGRATION---POLICIES TO SUPPORT COMMUNITY AND SYSTEMS CHANGE
Introduction: The New Hampshire Story---Lessons That Are Still Important	25	(1)
Gary Smith
K. Charles Lakin
The Closing of Laconia	25	(6)
New Decades, New Decisions: Community Integration and Deinstitutionalization	31	(22)
Julie Ann Racino
Introduction	31	(1)
Research Methodology	32	(1)
New Hampshire: A Brief Overview	33	(1)
Brief History of the New Hampshire Service System	33	(3)
Community Integration Findings	36	(4)
Key Leadership Components in New Hampshire	40	(4)
Comparative Roles in the Change Process	44	(2)
Perspectives on Change	46	(3)
A Look Toward the Future	49	(4)
Garrity v. Gallen: The Role of the Courts in Institutional Closure	53	(18)
Julie Ann Racino
Introduction	53	(1)
Brief History	54	(5)
Key Factors Contributing to Positive Outcomes	59	(10)
Litigation, Institutional Closures, and Community Development	69	(1)
Conclusion	70	(1)
The Closing of Laconia: From the Inside Out	71	(14)
Julie Ann Racino
Introduction	71	(1)
Internal Considerations in Institutional Closure	72	(7)
Knitting and Connecting	79	(1)
Strategies for Change	80	(4)
Conclusion	84	(1)
A Qualitative Study of Self-Advocacy and Guardianship: Speaking for Oneself	85	(16)
Julie Ann Racino
Introduction	85	(1)
The Meanings of Self-Advocacy	86	(2)
Desired Outcomes of Self-Advocacy	88	(3)
The Development of Self-Advocacy in New Hampshire	91	(1)
Local Self-Advocacy Groups	92	(3)
Future Issues in Self-Advocacy	95	(2)
New Hampshire's Guardianship Program	97	(2)
Conclusion	99	(2)
People Working Together: Local Control, Health Care Financing, Federal Regulations, and State Policy	101	(18)
Julie Ann Racino
Introduction	101	(1)
Area Agencies: The Regional Structures and Local Communities	102	(8)
Medicaid Home and Community-Based Services Waiver: Federal Financing of Community Services	110	(5)
Regulations: The Federal/State Roles	115	(2)
Conclusion	117	(2)
``People Want the Same Things We All Do'': The Story of the Area Agency in Dover, New Hampshire	119	(34)
Julie Ann Racino
Introduction	119	(1)
Brief History	120	(1)
Teachers in the Community	121	(4)
Community Places and Relationships	125	(2)
Supporting What People Want	127	(3)
Personal Choice, Self-Advocacy, and Families	130	(2)
Ways of Organizing to Provide Support	132	(5)
Conclusion	137	(4)
PART III: MOVING TOWARD UNIVERSAL ACCESS TO SUPPORT---POLICY IS PERSONAL
Introduction	141	(1)
Julie Ann Racino
Simi Litvak
Psychiatric Disability	141	(5)
Combined Physical and Cognitive Disabilities	146	(2)
Brain Injuries	148	(1)
Youth with Disabilities	149	(1)
Research Questions	150	(3)
Psychiatric Survivors, the International Self-Help Movement, and User-Directed Personal Assistance Services	153	(18)
Julie Ann Racino
Introduction	153	(1)
Personal Assistance Services	153	(1)
Expected Outcomes of PAS	154	(1)
Personal Experiences and PAS Development	155	(3)
Systems Design: Assumptions and Barriers	158	(2)
Tasks and Roles of Personal Assistants	160	(4)
Strategies and Accommodations	164	(2)
Decision Making and Consumer Control	166	(3)
Practical Aspects of PAS	169	(2)
Self-Advocacy, the Independent Living Movement, and Personal Assistance Services	171	(18)
Julie Ann Racino
Introduction	171	(2)
Universal Access to PAS	173	(1)
Information Access to PAS	174	(1)
Community Access	175	(1)
Views of Mental Retardation	176	(1)
Relationship with Self-Advocacy	177	(1)
Meaning of Personal Assistance Services	177	(2)
Support and Decision Making	179	(1)
Personal Assistance Services and Employment	180	(1)
Vulnerability and Abuse: Personal Assistants	181	(1)
Practical Issues of Personal Assistance Services	181	(6)
Conclusion	187	(2)
Children, Youth, and Adults with Brain Injuries: Implications for Personal Assistance Services	189	(18)
Julie Ann Racino
Introduction	189	(1)
Moving Toward Integrated Approaches to PAS: Brain Injury As a Subfield of Disability	190	(14)
Systemic and Policy Concerns in PAS	204	(1)
Conclusion: Personal Assistance Services and Future Contributions	204	(3)
Youth and Community Life: Perspectives of Adults with Disabilities on Personal Assistance Services	207	(28)
Julie Ann Racino
Introduction	207	(3)
Universal Access	210	(1)
Benefits of PAS	210	(1)
Information Access by Children and Youth with Disabilities	211	(1)
Personal Assistance Services Tasks for Children and Youth	212	(1)
The Meaning of Cognitive and Emotional Support	213	(1)
Personal Assistance in Schools	213	(1)
Career and Employment	214	(1)
Relationships, Community, and Recreation in the PAS Context	215	(1)
Personal Assistance, Family Support, and Youth	216	(5)
Practical Aspects of Personal Assistance Services	221	(3)
Conclusion	224	(5)
PART IV: HOUSING, FAMILIES, AND COMMUNITY SUPPORT---POLICY EVALUATION, RESEARCH, AND ANALYSIS
Introduction	227	(2)
James A. Knoll
Supporting Families	229	(1)
Supporting Adults	230	(1)
Professional Roles	231	(4)
The Role of Family Case Study Research in Family Policy: Local Agency Delivery Systems	235	(28)
Julie Ann Racino
Father and Son: A Brief Case Study of Residential School Placement in New York	235	(2)
Emerging Research Themes	237	(2)
Introduction	239	(4)
Family Case Study Research	243	(2)
Research Methodology	245	(9)
The Role of Family Case Studies in Evaluation Research	254	(7)
Conclusion	261	(2)
State Policy in Housing and Support: Evaluation and Policy Analysis of State Systems	263	(26)
Julie Ann Racino
Evaluation Research: Efforts at Statewide Change	263	(7)
Introduction	270	(6)
Residential Reform and Deinstitutionalization	276	(1)
Housing and Support Services	277	(7)
Housing, Neighborhoods, and Communities	284	(3)
Conclusion	287	(2)
A Policy Analysis of Foster Care: Children, Adolescents, and Adults	289	(26)
Julie Ann Racino
Adult Family Home Program in Milwaukee County, Wisconsin	289	(8)
Introduction	297	(1)
Philosophies of Foster Care	297	(2)
Specialized and Generic Foster Care Systems	299	(1)
Common Concerns in Foster Care	300	(3)
Foster Care Models in the United States	303	(5)
Professionalization of Foster Care	308	(3)
Support Services	311	(2)
Quality of Homes and the Safety of Children	313	(1)
Critiques of Foster Care Evaluations	313	(1)
Conclusion	314	(1)
Organizational Case Studies: Creating Change in Housing, Employment, Families, and Community Support	315	(20)
Julie Ann Racino
A Case Study of a For-Profit Agency in Minnesota	315	(4)
Introduction	319	(1)
Research Methodology	320	(4)
Organizational Studies	324	(1)
Case Studies: Teaching, Research, and Field Use	325	(8)
Conclusion	333	(2)
Conclusion: Toward Better Futures and Quality Lives	335	(16)
Julie Ann Racino
Introduction	335	(1)
Field Status	335	(3)
Support/Empowerment and Independent Living Paradigms	338	(1)
Status of Policy and Practice Development in Field Public Policy: Implications of PAS	339	(7)
Nature of Qualitative Evaluation Research	346	(3)
Endnote	349	(2)
Appendix A: Personal Assistance Services: Methodological Considerations	351	(4)
Introduction	351	(1)
Selection of Informants	351	(1)
Data Collection	352	(1)
Interview Field Guide	352	(1)
Working Definition of Personal Assistance Services	353	(1)
Data Analysis	353	(1)
Research Reports	353	(1)
Report References	353	(1)
Methodological References	354	(1)
Appendix B: Policy and Organizational Research Methodology	355	(12)
Introduction	355	(1)
Focus Areas for the Studies	356	(1)
Selection of States	357	(1)
Selection of Agencies	358	(1)
Data Collection and Preliminary Analyses	358	(3)
Data Analyses	361	(1)
Documents Reviewed	362	(2)
Report References	364	(3)
Bibliography	367	(70)
Organizations, Departments, and Associations Index	437	(6)
Subject Index	443