1. Transforming Society UCEDDs of the Future: Real Opportunities, Real Challenges

2. Context: A Case of Convergence The hurricanes The hurricanes Medicaid amendments Medicaid amendments TANF reauthorization TANF reauthorization Families living with disabilities Families living with disabilities Youth with disabilities Youth with disabilities

3. What the Hurricanes Taught Us What the Hurricanes Taught Us Emergency people did not know how to appropriately serve individuals and families with disabilities Emergency people did not know how to appropriately serve individuals and families with disabilities Vital services and supports vanished Vital services and supports vanished People with disability experience and expertise did not know how the emergency response system operated People with disability experience and expertise did not know how the emergency response system operated Emergency people did not know there were people with disability expertise ready and willing to help them make good decisions Emergency people did not know there were people with disability expertise ready and willing to help them make good decisions

4. Medicaid – the Numbers DD/MR recipients represent 1.3 percent of Medicaid recipients, but 9.5 percent of spending DD/MR recipients represent 1.3 percent of Medicaid recipients, but 9.5 percent of spending 530,000 individuals with MR/DD received Medicaid in 2004 with $27.4 billion 530,000 individuals with MR/DD received Medicaid in 2004 with $27.4 billion Average of cost per person $52,000 in HCBS programs and $114,400 in ICF-MR programs Average of cost per person $52,000 in HCBS programs and $114,400 in ICF-MR programs Average annual cost per person for all Medicaid beneficiaries is $7,000 Average annual cost per person for all Medicaid beneficiaries is $7,000

5. Medicaid: Funding Trend and Current State Behavior $26.4 billion in spending reductions in Medicaid will occur over 10 years $26.4 billion in spending reductions in Medicaid will occur over 10 years States have great discretion in how dollars are allocated States have great discretion in how dollars are allocated Only 27 states offer Medicaid to people who are working (Medicaid buy-in) Only 27 states offer Medicaid to people who are working (Medicaid buy-in) Nationally, only 17 states have 33 percent of DD/MR Medicaid recipients in competitive or supported employment Nationally, only 17 states have 33 percent of DD/MR Medicaid recipients in competitive or supported employment

6. Medicaid and Politics The top ten states that are promoting aggressively community based options for DD/MR Medicaid recipients The top ten states that are promoting aggressively community based options for DD/MR Medicaid recipients –State Legislatures – 4 Republican, 4 Democrat, 1 split, 1 non-partisan –Governors – 4 Republican, 6 Democrat –State Governments (Legislature and Governor) – 1 Republican, 2 Democrat, and 7 split

7. The Top 10 States on Innovative Use of Medicaid Dollars for Community Placements 1. New Hampshire 2. Maine 3. Massachusetts 4. Vermont 5. Alaska 6. Nebraska 7. Washington 8. Delaware 9. Wisconsin 10. Wyoming

8. TANF and People with Disabilities – the Numbers In 2002 1 out of every 6 TANF families had a member on SSI In 2002 1 out of every 6 TANF families had a member on SSI Between 32 and 44% of TANF recipients report a work-related impairment Between 32 and 44% of TANF recipients report a work-related impairment An estimated 20% of mothers on TANF report caring for a child with a disability An estimated 20% of mothers on TANF report caring for a child with a disability An estimated 20% of individuals with disabilities on TANF work An estimated 20% of individuals with disabilities on TANF work Only 30% of people referred by TANF to SSI qualify for SSI benefits Only 30% of people referred by TANF to SSI qualify for SSI benefits

9. The New TANF Amendments: Issues of Interest to Disability Groups Reduction in Medicaid benefits and the potential introduction of co-payments into Medicaid Reduction in Medicaid benefits and the potential introduction of co-payments into Medicaid Under TANF no credit/counting for time in rehabilitation in the work participation process; and Under TANF no credit/counting for time in rehabilitation in the work participation process; and Under TANF Under TANF availability of appropriate child care and availability of appropriate child care and consequences of time off to interact with health care providers and educators, parents of children with disabilities cannot meet the 40-hour work requirement consequences of time off to interact with health care providers and educators, parents of children with disabilities cannot meet the 40-hour work requirement

10. Poor Families with Disabilities: the Assumptions –They do not want to work –They can’t work –Let’s rehabilitate first, then try work –Let’s get them on SSI, that where they belong

11. Poor Families with Disabilities: Issues There is plenty of information, but it may not be accessible or family-friendly There is plenty of information, but it may not be accessible or family-friendly There are plenty of resources, but they are in separate agencies with their own rules There are plenty of resources, but they are in separate agencies with their own rules Innovation is going on, but is in the form of demonstrations not statewide practice Innovation is going on, but is in the form of demonstrations not statewide practice

12. Youth with Disabilities: the Numbers 2000-01 Grad. w/diploma 24.0% Grad. w/diploma 24.0% Am Indian/Alaska Native 52.2% Am Indian/Alaska Native 52.2% Asian/Pacific Islander28.0% Asian/Pacific Islander28.0% Black44.5% Black44.5% Hispanic43.5% Hispanic43.5% White33.9% White33.9% –Grad. Rate 47.6% –Drop out rate 41.1%

13. Youth with Disabilities: the Assumptions Everything is organized from birth Everything is organized from birth Exploration is structured Exploration is structured Special activities are safer Special activities are safer It’s not fair to other kids, especially in sports, to make time or accommodation for kids with disabilities It’s not fair to other kids, especially in sports, to make time or accommodation for kids with disabilities Observation rather than participation should be an acceptable option Observation rather than participation should be an acceptable option Acceptance of limitations is important reality check Acceptance of limitations is important reality check Parents and professionals should make all the decisions Parents and professionals should make all the decisions

14. UCEDDs Should Take Time To… Engage the wider world Engage the wider world It’s OK to start small but think big It’s OK to start small but think big Change views Change views Change roles and develop new ones Change roles and develop new ones Get the focus right Get the focus right Know what to offer Know what to offer

15. Find Out What’s Going On TANF: TANF: –states must meet new work participation rates; –many people with disabilities eligible for TANF do not meet SSA eligibility; –ADD has been asked to help people with disabilities on TANF to get the supports they need, and go to work Governors are considering new ways to use Medicaid dollars Governors are considering new ways to use Medicaid dollars Family Support 360: what it is, where it is, and where’s it going Family Support 360: what it is, where it is, and where’s it going Helping America’s Youth: the First Lady’s Initiative Helping America’s Youth: the First Lady’s Initiative Youth Information,Training, and Resource Centers Youth Information,Training, and Resource Centers

16. We Can Start Small, But Think Big What we choose to do individually and collectively becomes a legacy if it… What we choose to do individually and collectively becomes a legacy if it… –is lasting –is identifiable –is understandable –changes lives for the better –has a broad impact –has strong face validity –provides models for how to behave in the future

17. To Change Views It takes… It takes… –respect –a willingness to listen –patience –facts –direct experience –not letting go of, but sharing control –partnerships

18. Change Roles and Develop New Ones Think in terms of Think in terms of –functions who can do each one who can do each one who should do each one who should do each one who has the time who has the time –money –the time table and –the outcome

19. Get Focus Right Whether training, research, community outreach or dissemination the focus should include the family and/or the individual with a disability who we want to -- Whether training, research, community outreach or dissemination the focus should include the family and/or the individual with a disability who we want to -- –assist –empower –have included

20. Know What To Offer Know What To Offer Time Time Expertise Expertise Experience Experience Networks Networks Potential Partners Potential Partners Resources Resources Message Message Strategy Strategy Planning Planning Outreach Outreach Marketing Marketing A sounding board A sounding board A confidant A confidant A satellite A satellite

21. UCEDDs: Core Functions and the Future 1. Focus on the right groups – e.g. 1.culturally and linguistically diverse 2.youth (start early to ensure transitions that work) 2. Training 1.develop survival kits for people getting ready to enter the field 2.prepare people for emerging professions 3. Research 1.engage in cluster research 2.invest in strategic dissemination 3.use participatory research strategies as a common practice 4. Community Outreach 1.engage in strategic collaboration 2.engage locally, statewide, and nationally

22. The UCEDD of the Future Will…. Have diversity – in faculty, staff, students, partnerships, collaborations, & people served Have diversity – in faculty, staff, students, partnerships, collaborations, & people served Have mentoring programs Have mentoring programs Have independent fiscal expertise Have independent fiscal expertise Establish/sustain political connections Establish/sustain political connections Influence, know & “work” federal priorities Influence, know & “work” federal priorities Market strategically Market strategically

23. Thank You I greatly appreciate and respect what you do I greatly appreciate and respect what you do You each are a transformer in your own right You each are a transformer in your own right You are about to translate what you know for the next generation of directors, faculty, and staff You are about to translate what you know for the next generation of directors, faculty, and staff A legacy of leadership, vision, vitality, and inclusion is worth transferring with care A legacy of leadership, vision, vitality, and inclusion is worth transferring with care

24. Contact Information  Patricia A. Morrissey, Ph.D. –Commissioner, –Administration on Developmental Disabilities Administration for Children and Families Administration for Children and Families –U.S. Department of Health and Human Services (202) 690-6590 (202) 690-6590 NEW: patricia.morrissey@acf.hhs.gov NEW: patricia.morrissey@acf.hhs.gov http://www.acf.hhs.gov/programs/add/ http://www.acf.hhs.gov/programs/add/