“Imagine All the People” – Revisiting Family Support

1. “Imagine All the People” – Revisiting Family Support Rud Turnbull (rud@ku.edu) Ann Turnbull (turnbull@ku.edu) Beach Center on Disability1200 Sunnyside Avenue, 3111 Haworth Hall The University of KansasLawrence, KS 66045-7534785-864-7600 (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”

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.

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).

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.

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

8. Epiphany of Double Standard

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

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

11. “What Will You Do When You Fail?”

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.

13. JT’s Weekly Supports

14. Getting a Life through Fraternity Brothers

15. Which One has a Significant Disability?

16. Getting a Life through Friends

17. Job

18. Music

19. Home of His Own

20. Home of His Own

21. Transportation

22. Cheers Connections

23. Worship

24. Wellness

25. Getting a Life through Friends

26. Getting a Life through Friends

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

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.

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

30. Week at a Glance

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.”

32. Bureaucratization of Jay’s Supports • 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

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

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

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

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”

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.

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.

40. 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. • 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

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!

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

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

45. Creating Connections Preferences Strengths Friends Community Job School Home Neighborhood http://www.youtube.com/watch?v=4h7cHv5Ulr0 http://www.youtube.com/watch?v=xUoOlkqo7-A

46. NEIGHBORHOOD HOME FRIENDS JOB SCHOOL COMMUNITY Great Expectations

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

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

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

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