Two Roads Diverged: Creating Enviable Lives for Individuals with Disabilities and their Families Through Family and Community Partnerships UNC School of Social Work Clinical Lecture Series Focus on Family and Disability Seminar University of North Carolina at Chapel Hill Chapel Hill, NC Rud and Ann Turnbull

2 U.S. Disability Policy Promises Equality of opportunity Full participation Independent living Economic self-sufficiency

3 Jay Turnbull

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5 “Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth;” Robert Frost The Road Not Taken

Special pre-school Special elementary/middle school placement Special scout troop Special religious program Special camp Special secondary placement Sheltered workshop Group home 6 Road to Segregated Lifelong Living

7 Regular preschool Regular elementary/middle school placement Regular scout troop Regular religious program Regular camp Regular secondary placement Regular post-secondary placement Regular job Home of one’s own Road to Inclusive Lifelong Living

8 What withstands the test of time ? Education – WHAT you know Business/Politics – WHO you know What did Jay teach us over 4 decades?

9 Early Childhood

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11 Childhood Years

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Adolescent/Transition Years 14

15 High School Education

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CRISIS!!!! 17

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19 Epiphany of Double Standard

How many adults with significant disabilities do you know who have an enviable life – one that you would want for yourself and your family? 20

“No matter how far down the wrong segregated road you go, if it’s the wrong road – turn around” 21

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23 Failure to Achieve IDEA Outcomes Equality of opportunity Full participation Independent living Economic self-sufficiency

JT’s Weekly Supports 24

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29 Sisyphus from Greek mythology -- has to continually start over

30 “Sisyphus” with reliable allies as partners

31 Reliable Allies

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

33 Inviting Support Job Preferences Strengths Community School Friends Neighborhood Home

34 Creating Connections Home Job School Community Strengths Preferences Friends Neighborhood

35 Great Expectations FRIENDS NEIGHBORHOOD HOME JOB SCHOOL COMMUNITY

36 Solving Problems ACTION PLAN Weigh Options VISION Brainstorm Options

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47 Celebrating Success Celebrate Progress Acknowledge Group Members’ Contributions Develop the “Joy Quotient”

48 Memorial Service Eulogy

49 Memorial Service Celebration

JT’s Weekly Supports 50

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

52 It was not simply WHAT he knew or simply WHO he and his family knew…but it is HOW WELL he and his reliable allies could create trusting partnerships that were reciprocal. Reciprocity enabled his trusting partnerships to grow exponentially and flourish in creating and sustaining equality of opportunity, full participation, independent living, and economic self-sufficiency. What did Jay teach us over four decades?

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54 “I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and Jay Jay took the one less traveled by, And that…made all the difference.” Paraphrase from Robert Frost

55 “Love goes very far beyond a physical person of the beloved. It finds its deepest meaning in his spiritual being…” “Set me like seal upon they heart, love is a strong as death.”

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