APPENDIX 1 AN OVERVIEW OF THE 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. TABLE OF CONTENTS: AN OVERVIEW OF THE DISABILITY POLICY FRAMEWORK: A GUIDEPOST FOR ANALYZING PUBLIC POLICY INTRODUCTION 1 PART I AN OVERVIEW OF THE DISABILITY POLICY FRAMEWORK INTRODUCTION 3 STATEMENT OF FINDINGS AND RATIONALE 3 PRECEPT AND OVERARCHING GOALS 3 DEFINITIONS OF DISABILITY 4 CORE POLICIES 5 A. EQUALITY OF OPPORTUNITY 5 1. Individualization 5 2. Genuine, Effective, and Meaningful Opportunity 6 3. Inclusion and Integration 7 B. FULL PARTICIPATION 7 1. Involvement and Choice By the Individual In Decisions Affecting the Individual 7 2. Involvement and Choice By the Individual's Family In Decisions Affecting the Individual 8 3. Involvement by Individuals and Families at the System Level 8 C. INDEPENDENT LIVING 9 1. Independent Living Skills Development and Specialized Planning 9 2. Long-term Services and Supports, Including Personal Assistance Services and Supports 9 3. Cash Assistance and other Forms of Support 9 D. ECONOMIC SELF-SUFFICIENCY 10 1. Systems Providing Employment-related Services and Supports 10 2. Cash Assistance and Other Programs of Assistance 10 3. Tax Policy Providing Incentives 11 METHODS OF ADMINISTRATION 11 A. STATE PLANS, APPLICATIONS, WAIVERS 12 B. MONITORING AND ENFORCEMENT BY GOVERNMENT AGENCIES 12 C. PROCEDURAL SAFEGUARDS 12 D. ACCOUNTABILITY FOR RESULTS (OUTCOME MEASURES) 13 E. REPRESENTATION AT THE INDIVIDUAL AND SYSTEMS LEVELS 13 F. SINGLE LINE OF RESPONSIBILITY/COORDINATION AND LINKAGES AMONG AGENCIES 13 G. SERVICE COORDINATION (CASE MANAGEMENT) 14 H. FINANCING SERVICE DELIVERY 14 I. PRIVACY, CONFIDENTIALITY, ACCESS TO RECORDS, INFORMED CONSENT 14 J. COMPREHENSIVE SYSTEM OF PERSONNEL DEVELOPMENT 14 K. RESPONSIVENESS TO CULTURAL DIVERSITY 14 L. FISCAL PROVISIONS 15 M. FINANCIAL MANAGEMENT AND REPORTING 15 PROGRAM SUPPORT 15 A. SYSTEMS CHANGE INITIATIVES 15 B. TRAINING OF INDIVIDUALS WITH DISABILITIES AND THEIR FAMILIES 15 C. TRAINING OF PERSONNEL REGARDING PROMISING PRACTICES 16 D. RESEARCH ,TECHNICAL ASSISTANCE, INFORMATION DISSIMINATION 16 PART II GENERAL QUESTIONS FOR ANALYZING THE EXTENT TO WHICH DISABILITY-SPECIFIC AND GENERIC PROGRAMS AND POLICIES REFLECT THE DISABILITY POLICY FRAMEWORK INTRODUCTION 17 QUESTIONS RELATING TO STATEMENT OF FINDINGS AND RATIONALE 17 QUESTIONS RELATING TO PRECEPT 18 QUESTIONS RELATING TO OVERACHING GOALS 18 QUESTIONS RELATING TO DEFINITION OF DISABILITY 18 QUESTIONS RELATING TO CORE POLICIES 18 A. QUESTIONS RELATING TO EQUALITY OF OPPORTUNITY 18 1. Individualization 18 2. Genuine, Effective, and Meaningful Opportunity 19 3. Inclusion and Integration 19 B. QUESTIONS RELATING TO FULL PARTICIPATION 20 C. QUESTIONS RELATING TO INDEPENDENT LIVING 21 D. QUESTIONS RELATING TO ECONOMIC SELF-SUFFICIENCY 21 QUESTIONS RELATING TO METHODS OF ADMINISTRATION 22 A. QUESTIONS RELATING TO STATE AND LOCAL PLANS, APPLICATIONS, WAIVERS 22 B. QUESTIONS RELATING TO MONITORING AND ENFORCEMENT BY GOVERNMENT AGENCIES 22 C. QUESTIONS RELATING TO PROCEDURAL SAFEGUARDS FOR INDIVIDUALS, THEIR FAMILIES AND REPRESENTATIVES 23 D. QUESTIONS RELATING TO ACCOUNTABILITY FOR RESULTS (OUTCOME MEASURES) 23 E. QUESTIONS RELATING TO REPRESENTATION AT THE INDIVIDUAL AND SYTEMS LEVEL 24 F. QUESTIONS RELATING TO SINGLE LINE OF RESPONSIBILITY/COORDINATION AND LINKAGES AMONG AGENCIES 24 G. QUESTIONS RELATING TO SERVICE COORDINATION (CASE MANAGEMENT) 24 H. QUESTIONS RELATING TO FINANCING SERVICE DELIVERY 24 I. QUESTION RELATING TO PRIVACY, CONFIDENTIALITY, ACCESS TO RECORDS, INFORMED CONSENT 25 J. QUESTIONS RELATING TO COMPREHENSIVE SYSTEM OF PERSONNEL DEVELOPMENT 25 K. QUESTIONS RELATING TO RESPONSIVENESS TO CULTURAL DIVERSITY 25 L. QUESTIONS RELATING TO FISCAL PROVISIONS 25 M. QUESTIONS RELATING TO FINANCIAL MANAGEMENT AND REPORTING 25 QUESTIONS RELATING TO PROGRAM SUPPORT 26 1