1. Human Services Research Institute1 National Overview of Consumer Direction/Self- Determination: Challenges and Hopes Valerie Bradley 6 th Annual Aging and Mental Retardation Conference Boston, Massachusetts September 21, 2001

2. Human Services Research Institute2 I live from one tentative conclusion to the next, thinking each one is final The only thing I know for sure is that I am confused. Hugh Prather Notes to Myself

3. Human Services Research Institute3 Overview of Presentation Recent milestones The power of ideas Consumer direction: the outlines Positives and negatives Policy implications

4. Human Services Research Institute4 Preconditions for Consumer Direction Federal legislation Decentralization of responsibility Engagement of families and people with disabilities as advocates Closure and phase down of institutions Expansion of rights movement on community imperative Emphasis on outcomes Exploration of self-determination

5. Human Services Research Institute5 Recent History “We need residential facilities in different sizes, in different locations, for different types of residents, and above all we need courage on the part of state governments and our established private institutions to experiment with and test some new projects... [that embody a] radical departure from existing practices.” Gunnar Dybwad, 1960

6. Human Services Research Institute6 Wit is the sudden marriage of ideas which before their union were not perceived to have any relation. Mark Twain Notebook

7. Human Services Research Institute7 The Tale of Three Ideals Normalization Inclusion Self-Deter- mination 1970’s 1980s 1990s

8. Human Services Research Institute8 Ideal 1 -- Illuminates Institutions Normalization Large institutions are exposed as places that strip individuals of their humanity and connection with society; community system is the vision

9. Human Services Research Institute9 Ideal 1 + 2 -- Attack Segregation Inclusion Normalization + “Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership

10. Human Services Research Institute10 Elements of a Supports Approach? Person-Centered Planning Circles of Support Flexible Funding Family and individual empowerment Recognition of choices and preferences

11. Human Services Research Institute11 Ideals 1 + 2 + 3 -- Shift in Power Inclusion Normalization + + Self-Determination For people to have lives that they choose and to be supported in ways that facilitate their preferences, people must have control over the distribution of resources.

12. The Fundamental Problem Wait List Gary Smith, NASDDDS

13. Human Services Research Institute13 Basics of Self-Determination People decide what they want There is support to make decisions There are real options to choose from The process is simple and person- centered With control comes responsibility An approach, not a model, not a program

14. Human Services Research Institute14 Self-Advocates Said... That Self Determination means that... I am a person like all people: My life is my own. I speak for myself… “Speak Up” “Stick up for myself”. I make my own choices I am the boss of my own life. I make my decisions in my own life. I do for myself… and not depend on others so much. I am a person like all people: My life is my own.

15. Human Services Research Institute15 Antecedents Include... Family support programs, Personal assistance programs Employment voucher innovations Cash and counseling programs

16. Human Services Research Institute16 It is About Changing Systems... Shifting authority for decision making to the individual. Changing the way supports are funded to give people direct control over dollars. Changing the role of service providers, case managers and support staff. Putting the person into the center of the relationship between the state and provider organization.

17. Human Services Research Institute17 How Does it Work? Individual budgeting Personally controlled planning process, with support from family and friends. Help from a broker or personal assistant to locate and access supports. Using a financial intermediary to processes payments to support staff. Choice of providers who work for the individual.

18. Human Services Research Institute18 Factors Facilitating Change

19. Human Services Research Institute19 Influence of Self Advocacy Monitors of quality of life and performance Involvement in policy making Conduct of training Legislative lobbying

20. Human Services Research Institute20 Use of Fiscal Intermediaries Organizations that provide financial management assistance to individuals and families (e.g., payment of taxes, payment to providers, etc.) Utah Massachusetts Kansas Michigan

21. Human Services Research Institute The HCB Waiver Today Waivers in all 50 States 236,000 persons enrolled 79 waiver program Total cost: $5.8 billion Per persons costs are stable Average cost: about $27,000 per year 13% live in their own homes; 30% live with families

22. Human Services Research Institute22 Factors Limiting Change “We have met the enemy... and he is us” Walt Kelly Pogo

23. Human Services Research Institute23 Points of Tension How do we set personal budgets? Who does the “broker” really work for? Do brokers end up with more (not less) authority? What about existing case managers? Do we really need a “fiscal intermediary”? For adults with disabilities, is this a person or family driven approach? Where does this leave traditional providers?

24. Human Services Research Institute24 Tensions, continued Won’t this cost more, not less? How do we assure safety and well-being? Can self-determination exist when another speaks or “stands in” for the person? Have we made the process of self-determination too detailed with the wrong priorities? How do we define the idea of want versus need in terms of developing a budget? How do we ensure equity?

25. Human Services Research Institute25 Family Directed Self Directed Who Is “The Self” In Self- Determination? State Directed Provider Directed

26. Finding Balance... Authority Held By Participants LowHigh Low

27. Human Services Research Institute27 The Fundamental Issues to Overcome Are: Technical Can we figure out ways to make the structure work in a technical sense? Political Do we have the will to make changes to the flow of money? Can we abandon program (slot) driven approaches? Can we move from supply centered to demand centered systems?

28. Human Services Research Institute28 Areas for Further Reform Support advocacy (family support councils, self- advocacy) and create a training network Build on some “ripe providers” Explore new service configurations Build capacity of direct support staff Encourage competition Build community capacity Give disenfranchised communities power over funding (also need competent brokers)

29. Human Services Research Institute29 Reforms, continued Information should go both ways Support people to be present Create a forum to discuss issues between families and individuals Make waiver funds work for self-determination Standardize automated accounting and MIS Define and establish service coordinator roles and responsibilities Expand use of fiscal intermediaries with focus on consumer control

30. Human Services Research Institute30 In Sum, Self-Advocates Said... We need to define self-determination… We know the principles but people don’t get it… It’s problems with the doing that trips people up

31. Human Services Research Institute31 How to Preserve the Revolution

32. Human Services Research Institute32 The first duty of a revolutionary is to get away with it. Jerry Rubin To be a revolutionary you have to be a human being. You have to care about people who have no power. Jane Fonda Every revolution evaporates and leaves behind only the slime of a new bureaucracy Franz Kafka Thoughts on Revolution