Deinstitutionalization: Unfinished Business Companion Paper to Unfinished Business Toolkit National Council on Disability October 23, 2012 National Council on Disability 1331 F Street, NW, Suite 850 Washington, DC 20004 Deinstitutionalization: Unfinished Business, Companion Paper to Unfinished Business Toolkit This report is also available in alternative formats and on the National Council on Disability (NCD) Web site (www.ncd.gov). October 23, 2012 202-272-2004 Voice 202-272-2074 TTY 202-272-2022 Fax The views contained in this report do not necessarily represent those of the Administration, as this and all NCD documents are not subject to the A-19 Executive Branch review process. Dedication The National Council on Disability dedicates this paper to the memory of Susan M. Daniels, who was an extraordinary leader and advocate for equal opportunity, full participation, and the economic empowerment of people with disabilities around the world. Her vision and spirit live on in this paper. Acknowledgments The National Council on Disability (NCD) wishes to express its appreciation to Barbara Butz of Daniels & Associates, LLC, and consultants Nanette Goodman, Steve Allen, and Ellen Piekalkiewicz for their research and drafting of this paper. NCD also extends its thanks to the many self-advocates, family members, and others who shared their experiences with us. 4 Table of Contents DEDICATION .................................................................................................................. 4 ACKNOWLEDGMENTS ................................................................................................. 4 INTRODUCTION: UNFINISHED BUSINESS ................................................................. 9 DEINSTITUTIONALIZATION: THE RIGHT THING TO DO .......................................... 13 Deinstitutionalization is Possible ......................................................................... 13 Deinstitutionalization is the Right Thing to Do .................................................... 14 Deinstitutionalization is a Civil Right ................................................................... 15 EVOLUTION: FROM INSTITUTIONS TO COMMUNITY .............................................. 17 Institutions and the ICF/DD Program .................................................................. 17 Large State Institutional Settings ............................................................. 17 Small State Institutional Settings ............................................................. 17 Community and the HCBS Waiver ..................................................................... 18 Additional Community Program Funding ................................................. 19 INSTITUTIONS: DEFINITIONS, POPULATIONS, AND TRENDS ............................... 21 Definitions ........................................................................................................... 21 Population by Setting Type ................................................................................. 22 Population Trends .............................................................................................. 22 Population Variation Among States .................................................................... 24 DEINSTITUTIONALIZATION: GOAL AND STRATEGIES ........................................... 27 The Goal ............................................................................................................. 27 Strategies that Work ........................................................................................... 27 Strategies for the Deinstitutionalization Movement .................................. 28 Basic Advocacy Strategies to Support the Initiative ................................. 31 FORGING AHEAD: DEVELOPING A PLAN AND BUILDING COMMUNITY CAPACITY .................................................................................................................... 33 OVERCOMING MISCONCEPTIONS: MYTHS AND REALITIES ................................. 37 Myth 1. Serving “Difficult to Serve” Populations .................................................. 37 Statement of Myth .................................................................................... 37 Statement of Reality ................................................................................ 37 Supportive Information ............................................................................. 37 Avoiding unnecessary institutionalization: Mobile crisis teams and short-term stabilization services ......................................................... 38 5 Myth 2. Severity of Disability............................................................................... 39 Statement of Myth .................................................................................... 39 Statement of Reality ................................................................................ 39 Supportive information ............................................................................. 39 Myth 3. Cost Comparison by Setting .................................................................. 40 Statement of Myth .................................................................................... 40 Statement of Reality ................................................................................ 40 Supportive Information ............................................................................. 41 Myth 4. Funding of Services and Supports ......................................................... 44 Statement of Myth .................................................................................... 44 Statement of Reality ................................................................................ 44 Supportive Information ............................................................................. 44 Myth 5. Community Capacity and “Waiting Lists” ............................................... 46 Statement of Myth .................................................................................... 46 Statement of Reality ................................................................................ 46 Statement of Supportive Information ....................................................... 46 Waiting Lists ............................................................................................ 47 Myth 6. Benefits of Community Living ................................................................ 48 Statement of Myth .................................................................................... 48 Statement of Reality ................................................................................ 48 Supportive Information ............................................................................. 48 Myth 7. Institutional Closure and the Impact on the Economy ............................ 51 Statement of Myth .................................................................................... 51 Statement of Reality ................................................................................ 51 Supportive Information ............................................................................. 51 Myth 8. Mortality ................................................................................................. 54 Statement of Myth .................................................................................... 54 Statement of Reality ................................................................................ 54 Supportive Information ............................................................................. 54 Myth 9. Olmstead and Choice ............................................................................ 56 Statement of Myth .................................................................................... 56 Statement of Reality ................................................................................ 56 Supportive Information ............................................................................. 56 OREGON AND GEORGIA: CLOSING INSTITUTIONS AND BUILDING COMMUNITY SUPPORT SYSTEMS ............................................................................ 57 The Oregon and Georgia Experiences ............................................................... 57 Methodology ....................................................................................................... 57 Key Questions ......................................................................................... 57 6 Selection of Interviewees and Focus Group Participants ......................... 58 Key Discussion Topics ............................................................................. 58 Key Discussion Threads .......................................................................... 59 Oregon ............................................................................................................... 59 Timeline ................................................................................................... 59 Focus Group ............................................................................................ 61 Georgia ............................................................................................................... 70 Settlement Agreement ............................................................................. 70 Focus Group ............................................................................................ 72 REFLECTIONS: INDIVIDUAL VOICES