Challenges and Opportunities An Analysis of the Current Florida System of Services for Persons with Disabilities and Future Directions for System Change A Report to the Florida Developmental Disabilities Council, Inc. by Liberty Resources, Inc. and The Center on Human Policy at Syracuse University November 2005 Prepared for Florida Developmental Disabilities Council, Inc. FLORIDA DEVELOPMENTAL DISABILITIES COUNCIL, INC. Liberty Resources, Inc. Syracuse University Carl Coyle, MSW Center on Human Policy Executive Director Steven J. Taylor, Ph.D. 1605 James Street Director Syracuse, NY 13202 805 South Crouse Avenue http://www.liberty-resources.org/ Syracuse, NY 13244-2280 http://thechp.syr.edu Project Staff L. Robert Ciota, MS Director of Research and Development Liberty Resources, Inc. Bonnie Shoultz, MS Associate Director Center on Human Policy Syracuse University Pam Walker, Ph.D. Research Associate Center on Human Policy Syracuse University Steven J. Taylor, Ph.D. Director Center on Human Policy Syracuse University Acknowledgements The completion of this project would not have been possible without the contributions of Nicole Janer, Pam Root, and Laurie James who co-facilitated the public forums. The assembly and editing of the final document was an enormous undertaking which was completed by Cyndy Colavita, Debbie Simms, and Rachael Zubal-Ruggieri to whom we of the project staff are extremely grateful. Partial support for this project was provided through a subcontract with the Research and Training Center on Community Living, University of Minnesota, supported by the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133B031116. Members of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position of NIDRR and no endorsement should be inferred. CHALLENGES AND OPPORTUNITIES AN ANALYSIS OF THE CURRENT FLORIDA SYSTEM OF SERVICES FOR PERSONS WITH DISABILITIES AND FUTURE DIRECTIONS FOR SYSTEM CHANGE Table of Contents Executive Summary .....................................................................................i Introduction ............................................................................................... 1 Section I: Florida: A National Perspective ..................................................... 3 Section II: Areas of Emphasis ...................................................................... 9 • Education.............................................................................. 11 • Health Care........................................................................... 27 • Formal and Informal Supports.................................................. 47 • Transportation ...................................................................... 63 • Housing ................................................................................71 • Employment ......................................................................... 79 • Quality Assurance .................................................................. 95 Section III: Opportunities for Systems Change ............................................. 97 Appendix A: Florida Stakeholder Interviews...........................................................105 Appendix B: Bibliography of State of Florida Documents, Reports and Websites Reviewed by Project Team............................................107 Appendix C: Bibliography of National Reports, Publications, and Websites Reviewed by Project Team................................................... 115 Appendix D: National Consultants...........................................................................125 Appendix E: Forum Summary Information.............................................................127 Appendix F: Coordination Among Disability Service Entities ................................133 Appendix G: Comprehensive National Resources ................................................... 141 Appendix H: Relevant Sections of PowerPoint Presentation, Given by David Braddock, Ph.D., Associate Vice President, University of Colorado System & Executive Director, Coleman Institute for Cognitive Disabilities to Florida Association of Rehabilitation Facilities, Tampa, Florida, September 15, 2005 .......................... 148 Appendix I: Data Summary Section ..................................................................158 CHALLENGES AND OPPORTUNITIES: AN ANALYSIS OF THE CURRENT FLORIDA SYSTEM OF SERVICES FOR PERSONS WITH DISABILITIES AND FUTURE DIRECTIONS FOR SYSTEM CHANGE Executive Summary November 2005 Introduction The FDDC issued a competitive Request for Proposals designed to provide Council members with current information on the trends and strengths in the Florida system, as well as the challenges that prevent individuals with developmental disabilities from achieving a quality of life comparable to other nondisabled citizens in Florida. Liberty Resources, Inc., in partnership with the Center on Human Policy at Syracuse University conducted this project. The components included: six forums in Florida to obtain input from individuals with disabilities, families, providers, direct support staff, administrators, and others; interviews with Florida stakeholders; review of state and national reports and materials; and consultation with national experts. This report is organized into three sections: Section I, “Florida: A National Perspective,” provides data about the Florida service system within the context of national data and trends; Section II, “Areas of Emphasis,” contains information on topical areas, based upon the Administration on Developmental Disabilities’ areas of emphasis. These are: education, health, formal and informal supports, transportation, housing, employment, and quality assurance. Section III, “Opportunities for Systems Change,” points to key opportunities within Florida related to promoting quality lives in the community. Florida: A National Perspective A review of national data yields the following conclusions about Florida’s developmental disability service system in comparison with other states: • Spending for developmental disability services in Florida has increased significantly in recent years. Continued increases in spending would be necessary for Florida to match the national average or the spending in most other large states. • Florida institutionalizes fewer people in state facilities per its general population than the national average and all but one of the other large states. Yet, Florida lags behind most other states, including other large states, in deinstitutionalization over the past 10 years. Although Florida has closed state institutions, there was little reduction in the total number of people i served in institutional settings through 2004. Florida stands out from most other states in the percentage of children and people with mild intellectual disabilities in its state institutions. • Florida serves significantly fewer people with developmental disabilities in its residential system in settings of all size categories (1-6, 7-15, 16+) per the general population than the national average and in most other large states. • Florida has significantly increased the number of participants receiving and spending for individual (supported living, personal assistance) and family support services in recent years. Florida also compares favorably with others in the percentage of people who receive residential services in their own homes. These are strengths in the current service system. The decline in the number of people participating in and the funding for supported employment in recent years is a weakness. APD has committed to a five-year plan to expand supported employment throughout the state. Areas of Emphasis The areas of emphasis include: education, health care, formal and informal supports, transportation, housing, employment, and quality assurance. Within each of the areas of emphasis, Florida has distinct trends, initiatives, and organizations. From the perspective of stakeholders, there are numerous challenges that need to be addressed. In order to address these, within Florida there are many strengths and resources that can be used as a foundation. Also, nationally, there are many promising practices and resources to draw upon. Opportunities for Systems Change Within the areas of emphasis, there are distinct opportunities for systems change in Florida. Opportunities have been identified based on a confluence of events which are already occurring that are likely to support system change initiatives, and identifiable themes that represent an emerging consensus around challenges and a vision for the future. As the FDDC considers establishing strategies and planning goals which promote a more inclusive quality of life for individuals with developmental disabilities, the identified opportunities may provide some directions which hold the most promise for change. Early Childhood Education and Health: There is an opportunity for stakeholders in Florida to come together to engage in strategic planning to examine and align the early childhood health, early intervention, and education (Part B) systems, build infrastructure, and enhance and maximize the resources that exist for children and families. Education: Florida has a unique opportunity to address a significant systems performance issue: both instruction and the alternate assessment system in Florida’s