Transition in the Community: Self-Determination in Kansas Presented at the Annual Interhab Conference October 7, 2005

1. Transition in the Community: Self-Determination in KansasPresented at the Annual Interhab ConferenceOctober 7, 2005 Denise Poston denisep@ku.edu 785-864-7601 Susan Palmer spalmer@ku.edu 785-864-0270 Beach Center on Disability University of Kansas www.beachcenter.org

2. Essential Questions • What is self-determination? • What does self-determination contribute to transition from school life to community living? • What does the research tell us about transition and self-determination? • How does support for involvement of a person with disabilities work in real life? • How do A.J. and Denise navigate the community to provide access for a good quality of life?

3. One way to characterize Self-Determination Wehmeyer, M.L. (1996). Self-determination refers to “acting as the primary causal agent in one’s life and making choices and decisions regarding one’s quality of life free from undue external influence or interference”. A causal agent is someone who makes or causes things to happen in his or her life.

4. Self Determination as a Functional Outcome: • Enables individuals to become self-sufficient, self regulated learners. • Empowers people to take greater control of their own learning and life skills. • Increases person-centered involvement in schools and communities.

5. IDEA ’97 Transition Services Definition Student involvement language in IDEA Transition services are a coordinated set of activities for a student designed within an outcomes-oriented process, which promotes movement from school to post-school activities. Transition activities must be based upon the individual student's needs, while taking into account the student’s preferences and interests.

6. Self-Determination Supports Standards-Based Learning Standards in many districts include self-determination-related skills such as problem-solving and decision-making. Instruction in self-determination serves as an entry point to the general curriculum for students with intellectual disabilities.

7. OUTCOMES Essential Characteristics of Self-Determined Behavior PROCESS Teach Component Elements of Self-Determined Behavior

8. Component Elements of Self-Determined Behavior Choice-Making Skills Decision-Making Skills Problem-Solving Skills Goal-Setting and Attainment Skills Independence, Risk-Taking and Safety Skills Self-Observation and Self-Evaluation Skills Self-Reinforcement Skills Self-Instruction Skills Self-Advocacy and Leadership Skills Self-Awareness Self-Knowledge

9. Essential Characteristics of Self-Determined Behavior • Make choices and decisions as needed. • Exhibit some personal or internal control over actions. • Feel capable and act that way. • Understand the effects of own actions.

10. Self-Determination After High School High self-determination group was more likely to maintain both a checking and a saving account than the low self-determination group. Wehmeyer, M., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A follow-up study of youth with mental retardation and learning disabilities. Exceptional Children, 63(2), 245-255.

11. How Important Is Self-Determination? Current Employment Status Ex-students in high self-determination group were more likely to be employed than their peers in the low self-determination group. Wehmeyer, M., & Schwartz, M. (1997). Self-determination and positive adult outcomes: A follow-up study of youth with mental retardation and learning disabilities. Exceptional Children, 63(2), 245-255.

12. Transition Using Self-DeterminationHelps Students: • Learn to be advocates for themselves & others. • Become problem-solvers & decision-makers. • Be a part of their IEP team. • Become self-regulated learners. • Have a vision for the future & set goals to achieve it.

13. Self determination emerges… • By enhancing capacity using component elements of self-determined behavior (choice-making, problem- solving skills). • By being in an environment that supports choice and student-involvement. • By having frequent experiences that include choice and student involvement. • By providing supports and accommodations.

14. My Life, My Way – Planning for Life After High School • AJ’s Dream Life • Realities – How we are getting there • Coordinating and paying for AJ’s dream life • It takes a lot of work and advocacy.

15. Marshalling ResourcesWhat Do We Have to Work With? • Individual Resources • Time, money, motivation, experience, strengths • Community Resources • KU organizations, students, and faculty • People and their connections • Government benefits • SSI • Section 8 Housing • HCBS • Food stamps • School • Vocational Rehabilitation

16. AJ’s Dream Life • Work • Home • Well-Being • Friends • Fun • Family

17. Work – AJ’s Dream • “I want to be a manager” • “I want to write people up” • “On Monday, on Tuesday, on Wednesday. . . .” • “I want to earn $100” • “No thank you”

18. Work – The Reality • This tells us he wants • Choice and control, authority • Variety • Competitive wage • He is clear about what he doesn’t want • Behavior – completing tasks and interpersonal • Pet Store, video rental, preschool volunteer, own business

19. Work - Marshalling Resources • Support from teacher and paras in current job • Day supports, PA supports, or Individual control of HCBS funds can pay for job development and supportive employment (job coaches) • KU Connection • Building his work experience and skills • How and when do we tie in vocational rehabilitation? • Getting community employers to hire AJ • How might we help AJ develop his own business?

20. Home – AJ’s Dream • “I’ll live in my own apartment with a pool and pets” • “No lawn to mow. I want a housekeeper” • “Wife and 2 children (or pretty girls) for roommates” • “The old house in Leavenworth – buy it for $100”

21. Home – The Reality • Sharing a duplex with 2 men • Only Henry the tortoise, cat with Mom, dog still a dream • No lawn to mow • Nice room with lots of space – all his furniture and videos • The next steps – pets, roommates closer to his age, less in-home supports, increased skills (self and home care)

22. Home - Marshalling Resources • SSI pays for his share of rent and utilities. • Applying for food stamps. • On waiting list for low-income housing (Section 8) voucher. Will he have to move to use it? • Might he want to own his own home? Programs available to help him buy a home in the future. • Roommate, assistants, school staff teaching skills to live more independently. • Monitoring equipment?

23. Well-Being_ AJ’s Dream • “I don’t want to be old, sick and tired” • “I am handsome” • AJ has no concrete vision in this area

24. Well-Being - The Reality • AJ’s team needs to translate this for him • How to balance his desires with health - diet and exercise • Lawrence Athletic Club, monthly massage therapy, swimming, limit sweets and fat (low fat, sugar free, veggie pizzas) • Increase his awareness and skills

25. Well-Being - Marshalling Resources • Well-Being • Mom pays for LAC membership and massage. Medicaid might be able to if they were determined to be medically necessary. • Mom’s health insurance pays for health care. • Hard to find doctors who accept Medicaid in Lawrence. • Friends and others do more active activities (bike riding, canoeing, hiking, yoga).

26. Friends – AJ’s Dream • “Margaret will marry me. We’ll have a boy and girl. A cat and a dog.” • The world is made up of 2 kinds of people --girls and everyone else. Only girls are worth noticing.

27. Friends – The Reality • Margaret is AJ’s friend, but not a “girlfriend”. • A few other friends, but the “girlfriend” trumps all others. • AJ can easily become obsessed with a girl • How can he learn to value guy friends and groups of friends? • Learning how to be a friend to others. • How to encourage friendships – not just paid supports or “volunteer projects”. • Currently a weak area, but the most important in terms of AJ’s future

28. Friends - Marshalling Resources • Teacher helps facilitate friendships at school • KU Connection • Natural Ties and Best Buddies • AJ has many strengths, but behavior a major challenge • Short of resources in this area.

29. Fun – AJ’s Dream • “Playing video games” • “Eating out” • “Watching cartoons” • “Hanging out on Mass. Street” • “Buying some games” • “Get my drivers license so I can go anywhere”

30. Fun – The Reality • What’s wrong with letting him sit home and play video games? • Everything he likes to do costs money • Transportation – public and support providers. • AJ has interests, but seems limited • Activities help keep AJ’s behavior under control, but if denied a preferred activity, then aggression may occur • Preferred people (girls) can be motivating

31. Fun - Marshalling Resources • AJ is learning that he has to make choices with his money. SSI funds do not go very far. • Creative ideas of support people – encourage him to try new things. • Looking for a replacement for high school dances. • KU Connection next year – open up new opportunities.

32. Family – AJ’s Dream • “Mom, you come and take me out” • “Mom, I hate you” • “Dad come to Lawrence, visit me here”

33. Family – The Reality • Mom linked to AJ’s obsessions and aggressive behavior • Establishing new ways of being together - contact, but not too close • AJ visits Dad in TX at holidays. Enjoys, but says he doesn’t want to go. • Planning for future – planned family, not just blood family.

34. Family - Marshalling Resources • Mom’s role changing from managing daily life to helping AJ set vision for future • Keeping connected with family (other than Mom) takes effort • What role will his brother take in his future? • How do we integrate modest family financial resources without compromising AJ’s benefits?