Policy, program evaluation, and research in disability : community support for all / Julie Ann Racino.

Format:

Book

Author/Creator:

Racino, Julie Ann, 1953-

Series:

Haworth health and social policy

Language:

English

Subjects (All):

People with disabilities--Government policy--United States.

People with disabilities.

People with disabilities--Government policy.

People with disabilities--Home care.

Rehabilitation--Research.

United States.

Rehabilitation--Research--United States.

Rehabilitation.

People with disabilities--Social networks--United States.

People with disabilities--Social networks.

People with disabilities--Home care--United States.

Community health services--United States.

Community health services.

Physical Description:

xxv, 473 pages : illustrations ; 23 cm.

Place of Publication:

New York : Haworth Press, [1999]

Summary:

A reference on how community support systems can greatly assist people with diverse disabilities to live fuller lives outside of institutions. Recommendations are structured around the support and empowerment paradigm, with chapters in sections on community integration, universal access to support, and housing, families, and community support. Of interest to community service managers, policymakers, and individuals with disabilities and their families. The author is president and principal of Community and Policy Studies.

Contents:

Chapter 1. Qualitative Evaluation and Research: Toward Community Support for All / Julie Ann Racino 3

Evaluation Research Principles and Directions 7

Policy Analysis and Evaluation Research 11

The Format of the Book 20

Part II Community Integration

Policies to Support Community and Systems Change

Introduction: The New Hampshire Story

Lessons That Are Still Important / Gary Smith, K. Charles Lakin 25

The Closing of Laconia 25

Chapter 2. New Decades, New Decisions: Community Integration and Deinstitutionalization / Julie Ann Racino 31

New Hampshire: A Brief Overview 33

Brief History of the New Hampshire Service System 33

Community Integration Findings 36

Key Leadership Components in New Hampshire 40

Comparative Roles in the Change Process 44

Perspectives on Change 46

A Look Toward the Future 49

Chapter 3. Garrity v. Gallen: The Role of the Courts in Institutional Closure / Julie Ann Racino 53

Brief History 54

Key Factors Contributing to Positive Outcomes 59

Litigation, Institutional Closures, and Community Development 69

Chapter 4. The Closing of Laconia: From the Inside Out / Julie Ann Racino 71

Internal Considerations in Institutional Closure 72

Knitting and Connecting 79

Strategies for Change 80

Chapter 5. A Qualitative Study of Self-Advocacy and Guardianship: Speaking for Oneself / Julie Ann Racino 85

The Meanings of Self-Advocacy 86

Desired Outcomes of Self-Advocacy 88

The Development of Self-Advocacy in New Hampshire 91

Local Self-Advocacy Groups 92

Future Issues in Self-Advocacy 95

New Hampshire's Guardianship Program 97

Chapter 6. People Working Together: Local Control, Health Care Financing, Federal Regulations, and State Policy / Julie Ann Racino 101

Area Agencies: The Regional Structures and Local Communities 102

Medicaid Home and Community-Based Services Waiver: Federal Financing of Community Services 110

Regulations: The Federal/State Roles 115

Chapter 7. "People Want the Same Things We All Do": The Story of the Area Agency in Dover, New Hampshire / Julie Ann Racino 119

Brief History 120

Teachers in the Community 121

Community Places and Relationships 125

Supporting What People Want 127

Personal Choice, Self-Advocacy, and Families 130

Ways of Organizing to Provide Support 132

Part III Moving Toward Universal Access to Support

Policy is Personal

Psychiatric Disability 141

Combined Physical and Cognitive Disabilities 146

Brain Injuries 148

Youth with Disabilities 149

Chapter 8. Psychiatric Survivors, the International Self-Help Movement, and User-Directed Personal Assistance Services / Julie Ann Racino 153

Personal Assistance Services 153

Expected Outcomes of PAS 154

Personal Experiences and PAS Development 155

Systems Design: Assumptions and Barriers 158

Tasks and Roles of Personal Assistants 160

Strategies and Accommodations 164

Decision Making and Consumer Control 166

Practical Aspects of PAS 169

Chapter 9. Self-Advocacy, the Independent Living Movement, and Personal Assistance Services / Julie Ann Racino 171

Universal Access to PAS 173

Information Access to PAS 174

Community Access 175

Views of Mental Retardation 176

Relationship with Self-Advocacy 177

Meaning of Personal Assistance Services 177

Support and Decision Making 179

Personal Assistance Services and Employment 180

Vulnerability and Abuse: Personal Assistants 181

Practical Issues of Personal Assistance Services 181

Chapter 10. Children, Youth, and Adults with Brain Injuries: Implications for Personal Assistance Services / Julie Ann Racino 189

Moving Toward Integrated Approaches to PAS: Brain Injury As a Subfield of Disability 190

Systemic and Policy Concerns in PAS 204

Conclusion: Personal Assistance Services and Future Contributions 204

Chapter 11. Youth and Community Life: Perspectives of Adults with Disabilities on Personal Assistance Services / Julie Ann Racino 207

Universal Access 210

Benefits of PAS 210

Information Access by Children and Youth with Disabilities 211

Personal Assistance Services Tasks for Children and Youth 212

The Meaning of Cognitive and Emotional Support 213

Personal Assistance in Schools 213

Career and Employment 214

Relationships, Community, and Recreation in the PAS Context 215

Personal Assistance, Family Support, and Youth 216

Practical Aspects of Personal Assistance Services 221

Part IV Housing, Families, and Community Support

Policy Evaluation, Research, and Analysis

Supporting Families 229

Supporting Adults 230

Professional Roles 231

Chapter 12. The Role of Family Case Study Research in Family Policy: Local Agency Delivery Systems / Julie Ann Racino 235

Father and Son: A Brief Case Study of Residential School Placement in New York 235

Emerging Research Themes 237

Family Case Study Research 243

The Role of Family Case Studies in Evaluation Research 254

Chapter 13. State Policy in Housing and Support: Evaluation and Policy Analysis of State Systems / Julie Ann Racino 263

Evaluation Research: Efforts at Statewide Change 263

Residential Reform and Deinstitutionalization 276

Housing and Support Services 277

Housing, Neighborhoods, and Communities 284

Chapter 14. A Policy Analysis of Foster Care: Children, Adolescents, and Adults / Julie Ann Racino 289

Adult Family Home Program in Milwaukee County, Wisconsin 289

Philosophies of Foster Care 297

Specialized and Generic Foster Care Systems 299

Common Concerns in Foster Care 300

Foster Care Models in the United States 303

Professionalization of Foster Care 308

Support Services 311

Quality of Homes and the Safety of Children 313

Critiques of Foster Care Evaluations 313

Chapter 15. Organizational Case Studies: Creating Change in Housing, Employment, Families, and Community Support / Julie Ann Racino 315

A Case Study of a For-Profit Agency in Minnesota 315

Organizational Studies 324

Case Studies: Teaching, Research, and Field Use 325

Chapter 16. Conclusion: Toward Better Futures and Quality Lives / Julie Ann Racino 335

Field Status 335

Support/Empowerment and Independent Living Paradigms 338

Status of Policy and Practice Development in Field Public Policy: Implications of PAS 339

Nature of Qualitative Evaluation Research 346

Appendix A Personal Assistance Services: Methodological Considerations 351

Selection of Informants 351

Data Collection 352

Interview Field Guide 352

Working Definition of Personal Assistance Services 353

Data Analysis 353

Research Reports 353

Report References 353

Appendix B Policy and Organizational Research Methodology 355

Focus Areas for the Studies 356

Selection of States 357

Selection of Agencies 358

Data Collection and Preliminary Analyses 358

Data Analyses 361

Documents Reviewed 362

Report References 364.

Notes:

Includes bibliographical references (pages 367-435) and indexes.

ISBN:

0789005972

0789005980

OCLC:

40698610