1. “Imagine All the People” – Revisiting Family Support Rud Turnbull (rud@ku.edu) Ann Turnbull (turnbull@ku.edu) Beach Center on Disability 1200 Sunnyside Avenue, 3111 Haworth Hall The University of Kansas Lawrence, KS 66045-7534 785-864-7600 (phone) – 785-864-5825 (fax) www.beachcenter.org National Association of State Directors of Developmental Disabilities Services Mid-Year Conference and Directors Forum Oklahoma City, OK May 9, 2013

2. John Lennon’s Imagine Lyrics “Imagine no possessions I wonder if you can No need for greed or hunger A brotherhood of man Imagine all the people sharing all the world” 2

3. What is Family Support Family Support is defined as a set of strategies directed to the family unit but that ultimately benefit the individual with ID/DD. Family Support strategies are intended to assist family members, who have a key role in the provision of support and guidance to their family member with I/DD. 3

4. What is Family Support These strategies are designed, implemented, and funded in a flexible manner that addresses the emotional, physical, and material well-being of the entire family (Draft developed by National Agenda on Family Support Summit, Wingspread Summit, WI, March 2011, p. 2). 4

5. 5 Jay Turnbull 1967-2009

6. Imagine the Alternative to… 1.Moving away from lives we would not want for ourselves or our family. All too often yesterday’s answer to deinstitutionalization has become today’s re-institutionalization. 6

7. High School Education (1983-1987) Vision for segregation No research-based practice Emphasis on leisure education, group home living, and sheltered employment 7

8. 8 Epiphany of Double Standard

9. How many adults with significant disabilities do you know who have an enviable life – one that you would want for yourself and your family? 9 Enviable Lives?

10. “No matter how far down the wrong segregated road you go, if it’s the wrong road – turn around” 10

11. “What Will You Do When You Fail?” 11

12. Perspective on Family Life “You are only as happy as your saddest child.” Overwhelming impact of system breakdown on families’ emotional, physical, and material well-being. 12

13. JT’s Weekly Supports 13

14. Getting a Life through Fraternity Brothers 14

15. 15 Which One has a Significant Disability?

16. Getting a Life through Friends 16

17. 17 Job

18. 18 Music

19. 19 Home of His Own

20. 20 Home of His Own

21. 21 Transportation

22. 22 Cheers Connections

23. 23 Worship

24. Wellness 24

25. Getting a Life through Friends 25

26. Getting a Life through Friends 26

27. Robert Wood Johnson Systems Change Project 1999-2007 Participant Direction 27

28. Individual Budget Places the Individual and Family in the Driver’s Seat! $ The individual controls the budget, employees, and ultimately the provision of services with assistance from a fiscal intermediary and support broker. 28

29. “I’ve created an enviable life with money, and I’ve created one without money. Money is better.” Paraphrasing Joe E. Brown 29

30. Week at a Glance H – HousemateJC – Job Coach F – FamilyC1-C6 – Companions ST – Speech TherapistFR – Fraternity MT – Music TherapistGF – Girlfriend M – MasseuseCW – Co-Worker Y – Yoga Teacher 30

31. Happy 70th Birthday, Rud! (9/22/07) “Self-determination as practiced in Douglas County will no longer be permitted as of December 1, 2007.” 31

32. Create corporation through Secretary of State Buy expensive liability insurance Pay corporate taxes Develop plan of care to meet 15 standards Obtain FBI background checks of Rud and me Keep medication in lockbox in pre-packaged dosages Bureaucratization of Jay’s Supports 32

33. Paperwork Overload Estimate of approximately 500 hours preparing forms and participating in meetings over 18 months – equivalent of 3 full-time months of work 33

34. Ultimate Punishment for Families Who Want Enviable Lives Go through all of the same bureaucratic hoops of an agency Always be on call and have no safety net Be robbed of family togetherness and replace it with second job Antithesis of family support 34

35. Two forms not submitted on time Phone Message on 1/7/09 35

36. 36 http://www.youtube.com/watch?v=H8N7uVOQTDU

37. John Lennon’s Imagine Lyrics “You may say I’m a dreamer But I’m not the only one I hope some day you’ll join us And the world will live as one” 37

38. Three Ethical Principles Dignity – Treating individuals with disabilities and their families with respect and esteem Family as foundation – Recognizing families as the core unit of society and typically the first, most enduring, and most important entity to which individuals with disabilities relate. Community – Being part of a greater social whole and experiencing full citizenship of society at all levels. 38

39. Three Constitutional Principles Life – Regarding quality of life as the most important outcome Liberty – Actualizing self-determination fully are in a supported manner Equality – Having a life comparable to the lives of persons not effected by disability. 39

40. Imagine the Alternative to… 40 1.Moving away from lives we would not want for ourselves or our family. All too often yesterday’s answer to deinstitutionalization has become today’s re-institutionalization. Creating supports and services for “enviable lives” based on ethical and constitutional principles

41. Imagine the Alternative to… 2.Annual recycling of person-centered planning 41

42. Typical Person-Centered Planning Process Lots of discussion of preferences Lots of wall pictures Attended mostly by paid staff and family members Little action Entrenchment of segregated community living Nothing changes! 42

43. 43 Group Action Planning Inviting support Creating connections Sharing great expectations Solving problems Celebrating success

44. 44 Inviting Support Job Preferences Strengths Community School Friends Neighborhood Home

45. 45 Creating Connections Home Job School Community Strengths Preferences Friends Neighborhood http://www.youtube.com/watch?v=4h7cHv5Ulr0http://www.youtube.com/watch?v=xUoOlkqo7-A

46. 46 Great Expectations FRIENDS NEIGHBORHOOD HOME JOB SCHOOL COMMUNITY

47. 47 Solving Problems ACTION PLAN Weigh Options VISION Brainstorm Options http://www.youtube.com/watch?v=MhY1Sn7gjoA

48. 48 Celebrating Success Celebrate Progress Acknowledge Group Members’ Contributions Develop the “Joy Quotient” http://www.youtube.com/watch?v=PHIlJXNeRc4

49. 49 http://www.youtube.com/watch?v=MD5iSACBuRk This little light of mine

50. Imagine the Alternative to… 2.Recycling person-centered planning annually Group Action Planning merging formal and informal support into synergistic problem- solving over extended time to actualize ethical (dignity, family as foundation, and community) and constitutional (life, liberty, equality) principles. 50

51. Imagine the Alternative to… 3.Thinking the waiting list is all there is 51

52. W 52 I A T I N G

53. 53,700,000 Google hits on supported employment – doubled during last year 17,800,000 hits for housing for people with disabilities – tripled during last year Information Overload 53

54. “Getting the information one needs is like trying to get a sip of water from a fire hydrant.” 54

55. 55

56. Family Employment Awareness Training (FEAT) Training program to raise employment expectations and knowledge in order to improve competitive employment outcomes 11 trainings held over two days Joint project between Beach Center and the Kansas Parent Training and Information Center funded by the Medicaid infra-structure grant 56

57. Family Employment Awareness Training (FEAT) Knowledge of how to access and benefit from o Vocational Rehabilitation o Ticket to Work o Kansas Medicaid o Work Incentives (PASS, IRWE) o Small Business Administration 57

58. FEAT Outcomes Significant increase in knowledge, heightened expectations, and increased confidence Two-thirds of families agreed or strongly agreed that FEAT produced positive influence in gaining or maintaining competitive jobs. One-third of families reported competitive employment outcomes after training with 70% attributing strong positive influence to FEAT 58

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61. Systems Navigation – Short Definition Systems navigation is the process of making wise decisions in creating a coherent set of services and supports across life domains to foster both individual and family quality of life outcomes. 61

62. Marathon Navigation Skills Networking with progressive and reliable allies Envisioning great expectations Knowing and acting on rights Knowing evidence-based (recommended) practices Mapping and accessing services Accessing public funds and growing private funds Keeping records 62

63. Imagine the Alternative to… 3.Thinking the waiting list is all there is Having the best available knowledge at the fingertips of individuals with disabilities and their families at several levels of complexity and in multiple languages Having videos of success stories with practical guidance for implementation 63

64. Imagine the Alternative to… 4.Guess-timation of state priorities for addressing family needs 64

65. Family Systems Framework Family relationships Emotional health Health Economics Social relationships Recreation 65 Spirituality Daily care Teaching Getting services Lifespan changes

66. 66 https://kansasedu.qualtrics.com/SE/?SID=SV_3 FeIqvIVepSrC3G

67. Imagine the Alternative to… 4.Guess-timation of state priorities for addressing family needs Using the Family Needs Assessment is a valid and reliable tool that you can use to develop a state and national database of priority family needs 67

68. Imagine… 68