Supported Self-Determination for Individuals with Severe Disabilities

2. Employment Outcomes 25% of individuals with intellectual/developmental disabilities (IDD) are employed with most working less than full-time and not receiving benefits (Hendricks & Wehman, 2009; Man, 2007). African American youth with disabilities are significantly less likely to have jobs (Wagner et al, 2005). Students with IDD are 3 to 4 times more likely to have a goal of obtaining sheltered workshop employment as compared to other students with disabilities (Wehman et al., 2005). 2

3. Community Participation Outcomes Adults with severe disabilities are twice as likely as those without disabilities to experience isolation from others, being left out of activities, and lack of involvement in the community (NOD, 2000). African American and Latino students and students from households with incomes of $25,000 or less experience lower community participation (Wagner et al., 2004). 3

4. AAIDD�s Conceptualization of Supports When a person�s individual capacity and expectations/environmental demands do not fit each other, the result is a need for supports. Supports � �Resources and strategies that aim to promote the development, education, interests, and personal well-being of a person and that enhance individual functioning.� 4

5. Support needs � �The pattern and intensity of supports necessary for a person to participate in activities linked with normative human functioning.� Systems of supports � A coordinated set of resources and strategies across all life domains matched to the person�s needs and generated through a person-centered process. (Schalock et al., in press) 5

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7. Self-Determination Definitions �Acting as the primary causal agent in one�s life and making choices and decisions regarding one�s quality of life free from undo external influence or interference.� (Wehmeyer et al., 2003, p. 177) 7

8. Living one�s life consistent with one�s own values, preferences, strengths, and needs, as well as choosing on whom to depend for supports.� (Turnbull & Turnbull, 2001, p. 58) 8

9. 9 In Memory of Jay Turnbull

10. High School Education (1983-1987) Vision for segregation No research-based practice Emphasis on leisure education and sheltered employment 10

11. Transition to Adult Services Transition to congregate living and sheltered work 11

12. Transformation to the Enviable Life Standard 12

13. How many adults do you know who have a severe disability and significant problem behavior who have an enviable life � one that you would want for yourself and your family? 13

14. Quality of Life in Adult Services Escalation of problem behavior Hitting and choking Property destruction Refusal to participate Use of extensive punishment Onset of significant depression 14

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18. JT�s Weekly Supports 18

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21. Person-Centered Planning: Group Action Planning 21

22. Getting a Life Through Friends 22

23. Getting a Life Through Friends 23

24. Robert Wood Johnson Systems Change Project 1999-2007 Participant Direction 24

25. Individual Budget Places the Individual and Family in the Driver�s Seat! 25

26. Medicaid An entitlement program designed to help states meet health-care costs for low-income and medically needy populations The major source of federal and state funding for long-term services and supports provided in certified facilities (ICF � Intermediate Care Facilities) home and community settings Services provided in home and community settings are commonly through a Home and Community-Based Services (HCBS) waiver program 26

27. Home and Community Based Services (HCBS) Waivers Waivers allow states to provide services to individuals with disabilities that enable them to stay in their homes or in their community. HCBS waivers can fund services not otherwise authorized by the federal Medicaid statute such as respite care, home modifications, and non-medical transportation. The individual must: meet Medicaid financial eligibility criteria for the specific HCBS waiver program require institutionalization in the absence of the HCBS waiver. 27

28. Services Available Under HCBS Case management Behavioral support Therapies (e.g., physical, occupational, speech) Home heath aide Personal care Respite Transportation Habilitation Residential Day 28

29. Participant Direction of Funds Enables the participant to have the authority to exercise decision making authority over some or all of his/her services. Promotes personal choice and control over the delivery of services, including who provides services and how they are delivered. Enables the participant to take the responsibility for taking a direct role in managing his/her services.� An alternative to provider management of services wherein a service provider has the responsibility for managing all aspects of service delivery in accordance with the participant-centered service plan.� 29

30. Participant Direction vs. Agency Direction 30

31. Who is the Participant in Participant Direction? Participant acting independently on her/his own Parent(s) of a minor child A legal representative A non-legal representative 31

32. Participant Direction Opportunities Participant-Employer Direction Participant is supported to recruit, hire, and supervise the workers who furnish supports.� � Participant rather than a service provider agency carries out employer responsibilities for workers.� Participant-Budget Direction Participant has the authority and accepts the responsibility to manage his or her budget.� Participant makes decisions about obtaining the goods and services that are authorized in the individual's service plan and manages the budget. 32

33. JT�s Weekly Supports 33

34. Home of His Own Obtain Section 8 housing voucher Consider floor plan that enables private space Furnish in light of preferences Consider access to public transportation Consider access to other daily environments 34

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36. Housemates Use Medicaid to pay housemates and provide free rent Have stable housemates who live at home Have housemates serve as support broker Select housemates to have necessary temperament Have housemates model �sense of connection� for all other support people Provide breaks and back-up for housemates 36

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39. Personal Care and Breakfast Arrange work hours later in the day Infuse positive energy into wake-up routine Converse about favorite activities in daily schedule Choose breakfast menu Avoid issue of using an alarm clock Vary support person to add variety 39

40. Speech Therapy Promote communication competence � conversation, email, phone Rotate therapist each semester while keeping supervisor in permanent role Infuse energy and engagement Address client�s and family�s priorities 40

41. Work Obtain job coaching from Vocational Rehabilitation Develop a PASS Plan Calibrate job coaching to bipolar cycle Distinguish between depression and non-compliance 41

42. Work Provide support for depression and consequence for non-compliance Give cash every day Facilitate connections to co-workers Have a structured routine of tasks Use preferred tasks on difficult days 42

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46. Massage and Yoga Pay for these services with SSDI or Medicaid (depending upon state-approved services Get order from physician for massage and yoga for medical reasons 46

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49. Music Therapy Pay for these services with SSDI or Medicaid (depending upon state-approved services Add sheer joy to each day Use music as a method of instruction Incorporate friends to maximize connection Use music to enhance self-concept and contribution 49

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52. Companions Use Medicaid to pay companions Riffel family, relatives, and friends Tom set the tone of dignity and unconditional support Tom�s and Jay�s hospitality provided �a home away from home� for companions Reciprocating support to companions is essential 52

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54. Cheers Connections Hang out as a �regular� in preferred settings Become acquainted with owners and other regulars and develop relationships Seek opportunities to reciprocate kindness Communicate directly about support needs 54

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56. 56 Volunteering at the Community Health Food Store

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58. Transportation Teach use of public transportation Invite public transportation providers to be reliable allies Meet regular riders and teach them to provide support Consider transportation options when choosing a home 58

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61. Church Greet people on a regular basis Participate in worship and music Participate in holiday rituals Become part of the church community 61

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63. Bedtime and Sleep Decide on bedtime each evening Say prayers aloud with family Provide options when unable to sleep Prevent behavior problems during the night Accept responsibility for wet sheets 63

64. JT�s Weekly Supports 64

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66. Self-Determination Definitions �Acting as the primary causal agent in one�s life and making choices and decisions regarding one�s quality of life free from undo external influence or interference.� (Wehmeyer et al., 2003, p. 177) 66

67. Living one�s life consistent with one�s own values, preferences, strengths, and needs, as well as choosing on whom to depend for supports.� (Turnbull & Turnbull, 2001, p. 58) 67

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