DISABILITY POLICY FRAMEWORK: A GUIDEPOST FOR ANALYZING PUBLIC POLICY PREPARED BY: ROBERT SILVERSTEIN, J.D. DIRECTOR, THE CENTER FOR THE STUDY AND ADVANCEMENT OF DISABILITY POLICY April 24, 2000 This paper was funded by a grant from The Joseph P. Kennedy, Jr. Foundation, grants from the National Institute on Disability and Rehabilitation Research of the United States Department of Education supporting the Rehabilitation Research and Training Center on Workforce Investment and Employment Policy for Persons with Disabilities (No. H133B980042) and the Rehabilitation Research and Training Center on State Systems and Employment (No. H133B30067), and a grant from the Robert Wood Johnson Foundation. Additional support for this paper was provided by The Public Welfare Foundation, The Peter L. Buttenwieser Fund of the Tides Foundation, Mr. and Mrs. Justin Dart, Fenmore R. Seton, The American Occupational Therapy Association, Inc., The Bernard L. Schwartz Foundation, Inc., Glaxo Wellcome, Inc., Josiah Macy Jr. Foundation, Kaleidoscope, American Speech-Language-Hearing Association, The Nancy Lurie Marks Family Foundation, The Philanthropic Collaborative, Inc., and The Ada G. Halbreich Revocable Trust. The opinions contained in this paper are those of the author and do not necessarily reflect those of the U.S. Department of Education or the other grantors. This Paper may be reproduced for noncommercial use without prior permission if the author Robert Silverstein and the Center for the Study and Advancement of Disability Policy (CSADP) are cited. ABOUT THE AUTHOR: Robert Silverstein, J.D. Director of The Center for the Study and Advancement of Disability Policy. Mr. Silverstein is known nationally for his work in the area of disability policy. As staff director and chief counsel for the Subcommittee on Disability Policy of the Committee on Labor and Human Resources, U. S. Senate (1987-1997) and counsel to the Subcommittee on Select Education of the Committee on Education and Labor, U.S. House of Representatives (1985-1987), he was a behind-the-scenes architect of more than 20 enacted disability-related bills (including the Americans with Disabilities Act, the early intervention program for infants and toddlers with disabilities and their families and the 1997 Amendments to IDEA) and numerous disability-related amendments to other bills concerning health, education, welfare, job training, and civil rights. Prior to working on Capitol Hill, Mr. Silverstein was co-founder of a law firm that focused on public policy analyses for Federal, State, and local officials and representation of persons with disabilities and their families. He was also the staff director of a congressionally-mandated study of title I of the Elementary and Secondary Education Act at the National Lawyers Committee for Civil Rights Under Law. Mr. Silverstein holds a B.S. in Economics from the Wharton School of Finance and Commerce at the University of Pennsylvania and a J.D. from Georgetown University Law Center. TABLE OF CONTENTS: DISABILITY POLICY FRAMEWORK: A GUIDEPOST FOR ANALYZING PUBLIC POLICY INTRODUCTION 1 A. BACKGROUND AND PURPOSE OF THE PAPER 1 B. RESEARCH APPROACH AND ACTIVITIES 3 C. STRUCTURE OF PAPER 3 CATEGORIES OF LAWS AFFECTING INDIVIDUALS WITH DISABILITIES 6 A. CIVIL RIGHTS STATUTES 6 B. ENTITLEMENT PROGRAMS 7 C. DISCRETIONARY GRANT-IN-AID PROGRAMS 9 1. Formula Grant Programs 10 2. Competitive Grant Programs 12 D. REGULATORY STATUTES 14 E. MISCELLANEOUS CATEGORY OF LAWS, INCLUDING APPROPRIATONS, TAX LEGISLATION, AND LOANS 15 STATEMENT OF FINDINGS/RATIONALE 16 STATEMENT OF PRECEPT AND OVERARCHING GOALS 19 DEFINITIONS OF DISABILITY 22 CORE POLICIES 26 A. EQUALITY OF OPPORTUNITY 26 1. Individualization and Interdisciplinary Assessments 26 2. Genuine, Effective, and Meaningful Opportunity: Accommodations, Auxiliary Aids and Services, Programs Accessibility 29 3. Genuine, Effective, and Meaningful Treatment: Modifications of Policies and Procedures 31 4. Treatment in the Most Integrated Setting Appropriate 32 B. FULL PARTICIPATION (EMPOWERING INDIVIDUALS AND FAMILIES) 34 1. Involvement and Choice by the Individual in Decisions Affecting the Individual 34 2. Involvement and Choice by the Individual's Family in Decisions Affecting the Individual and the Family 34 3. Involvement by Individuals and Families at the System Level 34 C. INDEPENDENT LIVING 36 1. Independent Living Skills Development and Specialized Planning 37 2. Long-Term Services and Supports Including Personal Assistance Services and Supports 37 3. Cash Assistance and Other Programs of Assistance 38 D. ECONOMIC SELF-SUFFICIENCY 38 1. Systems Providing Employment-Related Services and Supports 39 2. Cash Assistance Programs and Other Programs of Assistance that Include Work Incentives 39 3. Tax Policy 40 METHODS OF ADMINISTRATION 41 A. METHODS OF ADMINISTRATION, IN GENERAL 41 B. STATE AND LOCAL PLANS, APPLICATIONS, WAIVERS 42 C. MONITORING AND ENFORCEMENT BY GOVERNMENT AGENCIES 42 D. PROCEDURAL SAFEGUARDS 43 E. ACCOUNTABILITY FOR RESULTS (OUTCOME MEASURES) 44 F. REPRESENTATION AT THE INDIVIDUAL AND SYSTEMS LEVEL 45 G. SINGLE LINE OF RESPONSIBILITY/COORDINATION AND COLLABORATION AMONG AGENCIES 46 H. SERVICE COORDINATION 47 I. FINANCING SERVICE DELIVERY 49 J. PRIVACY, CONFIDENTIALITY ACCESS TO RECORDS, INFORMED CONSENT 49 K. COMPREHENSIVE SYSTEM OF PERSONNEL DEVELOPMENT AND PERSONNEL STANDARDS 50 L. RACIAL, ETHNC, AND LINGUISTIC DIVERSITY 50 M. FISCAL PROVISIONS 51 N. FINANCIAL MANAGEMENT AND REPORTING PROVISIONS 51 PROGRAM SUPPORTS 52 A. SYSTEMIC CHANGE 52 B. TRAINING OF PERSONS WITH DISABILITIES AND THEIR FAMILIES 53 C. PERSONNEL PREPARATION AND TRAINING 53 D. RESEARCH, DEMONSTRATIONS, TECHNICAL ASSISTANCE, DISSEMINATION OF INFORMATION 54 CONCLUSION: 54 A. QUESTIONS RELATING TO STATEMENT OF FINDINGS AND RATIONALE 54 B. QUESTIONS RELATING TO CORE PRECEPT 55 C. QUESTIONS RELATING TO OVERACHING GOALS 55 D. QUESTIONS RELATING TO DEFINITION OF DISABILITY 56 E. QUESTIONS RELATING TO CORE POLICIES 56 1. Questions Relating to Equality of Opportunity 56 a. Individualization 56 b. Genuine, Effective, and Meaningful Opportunity. 57 c. Inclusion and Integration. 57 2. Questions Relating to Full Participation 57 3. Questions Relating to Independent Living 58 4. Questions Relating to Economic Self-Sufficiency 59 F. QUESTIONS RELATING TO METHODS OF ADMINISTRATION 59 1. Questions Relating to State and Local Plans, Applications, Waivers 59 2. Questions Relating to Monitoring and Enforcement by Government Agencies 60 3. Questions Relating to Procedural Safeguards for Individuals, Their Families and Representatives 61 4. Questions Relating to Accountability for Results (Outcome Measures) 61 5. Questions Relating to Representation at the Individual and Systems Level 61 6. Questions Relating to Single Line of Responsibility/Coordination and Linkages Among Agencies 61 7. Questions Relating to Service Coordination (Case Management) 62 8. Questions Relating to Financing Service Delivery 62 9. Questions Relating to Privacy, Confidentiality, Access to Records, Informed Consent 62 10. Questions Relating to Comprehensive System of Personnel Development 63 11. Questions Relating to Responsiveness to Cultural Diversity 63 12. Questions Relating to Fiscal Provisions 63 13. Questions Relating to Financial Management and Reporting 63 G. QUESTIONS RELATING TO PROGRAM SUPPORTS 63 APPENDIX 1: AN OVERVIEW OF THE FEDERAL DISABLITY POLICY FRAMEWORK: A GUIDEPOST FOR ANALYZING PUBLIC POLICY APPENDIX 2: MAJOR DISABILITY-RELATED LEGISLATION 1956 - 1999 APPENDIX 3: WEB SITES FOR FEDERAL DISABILITY-RELATED LEGISLATION, REGULATIONS, AND COURT CASES APPENDIX 4: GLOSSARY OF ACRONYMS