State DD Systems

1. State DD Systems Helping States Build A New Paradigm: A Values-Based Response to Demographic and Economic Realities Administration on Developmental Disabilities Technical Assistance Institute June 10, 2008 Nancy Thaler Executive Director

2. Part 1 The Challenges We Know

3. Where and with whom people Live 160,000 people 1966 38,000 people 2008 10 States Have No Institutions

4. Home Sizes Getting Smaller RISP Report 2007, Prouty &Lakin

5. Where are we?

6. Moving from Service Life to Community Life Service Life A Good But Paid Life CommunityLife Michael Smull Chair of The Learning Community for Person Centered Practices; Director of Support Development Associates

7. Why Do So Few People Have a Community Life? We’ve had IEPs and IHPs Self determination is the goal even of ICFs/MR Why aren’t we Person-centered ?

8. It’s Not Easy We have to ask people about everything – no decisions about them without them It takes more time than doing it the old way… “when we knew best.” Their decisions & preferences require us to do things that are hard Risk taking requires us to think and behave differently We are drawn into family dynamics Money no longer controlled by providers Requires more complex strategies in order to listen to the person and meet assurances

9. Moving from Service Life to Community Life Requires Leadership and Hard Work CommunityLife Service Life A Good But Paid Life Michael Smull Chair of The Learning Community for Person Centered Practices; Director of Support Development Associates

10. NASDDDS Communities of PracticeWhat State Systems are Learning Community of Practice– like minded people who form to share what they know and to learn from one another regarding some aspects of their work. • Building Person-Centered Organizations: Fulfilling the Promise of Person Centered Planning • Supported Employment Leadership Network

11. Building Person-Centered Organizations: Fulfilling the Promise of Person Centered Planning Real Choices System Change Grant • $2.1M for three years • Six States: Virginia Georgia North Carolina Oregon Tennessee South Dakota • Partners • Michael Smull • Nat. Assoc. State Directors of DD Services • Virginia Commonwealth University Center for Excellence

12. Three Levels of Change • Level One: changes in day to daypractice that impact persons’ lives and their relationships with formal and informal supports; • Level Two changes in provider agency management and leadership affecting organizational policy, practice, and program outcomes; • Level Three changes in service delivery system infrastructure statewide resulting from changes in regulation, state policy and system design.

13. The Role of the Partners • NASDDDS will: a) coordinate activities and share lessons learned through the development of a dynamic “Community of Practice” (CoP) among the participating states, (b) assist in the preparation, publication and dissemination of project materials and outcomes, and c) provide technical assistance • VCU will conduct the evaluation

14. Focus- Three Levels of Change Level One: day to daypractice that impact persons’ lives and their relationships with people Level Two: provider agency management & leadership affecting organizational policy, practice, and program outcomes; Level Three: system infrastructure statewide resulting from changes in regulation, state policy and system design.

15. Supported Employment Leadership Network – SELN Sixteen States: Washington, Oregon, California, Texas, Colorado, Louisiana, New Mexico, Michigan, Pennsylvania, South Carolina, West Virginia, Massachusetts, Connecticut, Delaware, Maryland, Hawaii Funded by the member states Third year Partners University of Massachusetts Institute on Community Inclusion

16. What States are Learning • Clarity of Goals • Shared value system • Leadership- key players with shared values • System Level Strategies • Flexible policies – employment first policies • Flexible funding – support innovation, incentives • Using data to communicate goals and progress • Training programs that diffuse innovation throughout the state

17. Part 1 The Challenge Before Us

18. Demographic Shift = America’s Care Gap Larson, Edelstein, 2006

19. U.S. Demand for Workers Projections [2002 – 2012] Source: Occupational Employment Projections February 2004, U.S. Bureau of labor Statistics.

21. www.gao.gov/cghome.htm

22. Waiting for Residential Services Lakin Residential Services Status and Trends 2006

23. Service Cost Comparisons * Less than 24 hr David Braddock State of the States 2008

24. Reality We can’t afford to pay for 24 hr. residential services for everyone. We can’t staff 24 hr. residential services even is we could afford to. If we could, would we want to? Braddock, D., Hemp R., Rizzolo, M.C., et al. (2005) The State of the States in Developmental Disabilities. Hemp, R., & Rizzolo, M.C, (April 2006). State of the states project collection of family support data. Coleman Institute for Cognitive Disabilities, the University of Colorado. Prouty, S,mith and Lakin Residential Services and Trends

25. An Emerging Paradigm: More Adults are Living with their Families Over half (57%) of all individuals with MR/DD receiving publicly financed supports live in the home of a family member. Five states reported that 70% or more of all persons receiving support resided with their families. Lakin Residential Services Patterns and Trends 2007

26. Supporting People Living with Their Family – What Does it Mean?

27. It Means that….. People live in the context of family or an alternate shared living arrangement Personal outcomes will be influenced by the people the person lives with Choice; self direction; relationships; a job; etc. The provision of community services will have to include Support to the family/shared living Involvement in family dynamics – supporting the person in the context of their family

28. The individual’s identity, personal preferences and dreams must be primary Families and care givers need support, training and information Training Case managers must plan for the person within the family context Staff must be trained to work with others at home to support the person with a disability The person with a disability must have opportunities outside of home...support self advocacy. It Means that…..

29. What is the New Paradigm? Types of services? What should system infrastructure look like? Program Policies? Training needed? How is quality assured? Risks or problems with these services? How can they be managed? Reimbursement methods? Legislation needed? Who gets 24 hr. residential services?

30. Part 3 Draft Strategic Plan 2008

31. Mission and Principles • Mission: To assist member state agencies in building person centered systems of support for people with developmental disabilities and their families. • Guiding Principles: Individuals with developmental disabilities have the right to: • Be treated with respect and dignity • Be independent and make individual choices • Participate in family and community life • Have opportunities to maximize their full potential • Receive outcome based services

32. Current Reality • We can’t afford to pay for 24 hr. residential services for everyone. • We can’t staff 24 hr. residential services even is we could afford to.

33. Challenge: Designing the New Paradigm Serving people in the context of family – it’s not just family support. • Define the services: are families service recipients? • Determine how much service is needed to avoid the need for 24 hr. residential services • Honor self determination • Rethink the role of case managers • Define and measure quality • Identify the risks and how are they managed • Financing and reimbursement methods • Establish self-advocacy as a part of the service system

34. Challenge:Designing the New Paradigm • Determining who gets 24 hr. residential services • Developing and expanding non-24 hr. service options for those who no longer live with nuclear families: • Extended families • Shared living/host home

35. Other Environmental Influences • Interest in Self-Direction Continues to Grow • Especially among families supporting family members at home • Self-directed services can be cost effective • Self-Advocacy Needs Support • As more and more people live with family into adult hood, the need for peer support and opportunities to develop personal self advocacy skills becomes more critical • Self advocacy organizations cannot sustain themselves without reliable financial and organizational support

36. Environmental Influences cont. • Increased Emphasis on Measuring Quality and • Increased Reliance on Collecting & Using Data Deficit Reduction Act requirements 1915 (C) Waiver Application requirements Utilization of Managed Care

37. Environmental Influences: • Advances in Health Care and Technology • Smart Houses • Self-monitoring health devices • Electronic supervision • Mobility and communication devices • Medications to treat mental illness • Post traumatic stress treatments • Research on the impact of the environment and food on behavior Autism

38. Environmental Influences: • State and Federal Initiatives to Restructure Long Term Care Systems • Agency consolidation and/or reorganization • Single points of entry • Managed care contracts • Use of information technology to standardize practice across systems

39. Environmental Influences: • Leadership Turnover in State Agencies • 19 new state directors in 2007 • 6 new state directors in 2008 • Retirements of many senior managers

40. Environmental Influences: • Economic Challenges $9 trillion federal deficit 25 states face total budget shortfalls in 2009; 6 others expect budget problems • 2008 election – new administration Cost of oil rising Unemployment Recession Federal deficit Rising obligations in Social Security and Medicare Foreclosures Costs of the wars Health Care Insurance Crisis Environment – global warning

41. Part 4 States Need Your Help

42. Government Leaders Can…. • Do what people want – lead them where they want to go • Do what people won’t object to – Show Them the Way! • Do what people don’t want as long as there aren’t enough of them or they aren’t powerful enough to stop the process

43. State MRDD Director Pressure Points Legislature Governor Cabinet The Citizens MR/DD Director

44. UCED State MRDD Director Pressure Points P&A Legislature Governor DD Council Cabinet The Citizens MR/DD Director Advocates Providers Medicaid Self Advocates

45. What States Need Help With • Changing to a new paradigm: to develop effective systems of services that support people living with their families or in alternative family/community options • Developing the capacity to monitor and improve quality • Learning about and applying advances in health care and technology • Responding to initiative to restructure long-term care service systems • Developing responsive financial management strategies • Developing and using of information technology • Leadership development programs

46. How Can You Help? • Build a Relationship with the Director • Decide to work on the “inside” – not from the “outside.” • Ask how you can help • Keep directors informed and provide information they don’t have access to • Offer to do what the DD Agency can’t do: • Fund pilot/demos to achieve mutual goals • Support self advocates • Hold listening sessions with stake holders • Publications

47. Examples of DD Council/State Agency Partnerships • Ohio; Project Search; Dual Diagnosis Project • Georgia – Project Search • Penna.- Strategic Planning; Developed Independent Monitoring Teams • Vermont - Facility Closure; Training Programs • Illinois – Research and Strategic Planning • North Carolina – Systems Change; Self Advocacy

48. Opportunities • Systems Transformation and Money Follows the Person • SELN Project – 16 states http://www.seln.org/ Nevada DD Council pays membership feel California • Person Centered Organizations Projects Tennessee DD Council funds participation • National Core Indicators - measuring quality - 30 States http://www.hsri.org/nci/

49. What States Need Help With • Changing to a new paradigm: to develop effective systems of services that support people living with their families or in alternative family/community options • Developing the capacity to monitor and improve quality • Learning about and applying advances in health care and technology • Responding to initiative to restructure long-term care service systems • Developing responsive financial management strategies • Developing and using of information technology • Leadership development programs

50. National Project Partnerships • Virginia Commonwealth University - Person Centered Organizations • University of Mass. Institute on Community Inclusion - Supported Employment Leadership Network ; Publications; NASDDDS Research Committee • University of Minnesota Institute on Community Integration - Publications: NASDDDS Research Committee; Analysis of National Core Indicator data • University of Delaware - Leadership Institute • Human Services Research Institute HSRI - National Core Indicators;NASDDDS Research Committee • Michael Smull - Person Centered Organizations