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

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U.S. Disability Policy Promises

• Equality of opportunity

• Full participation

• Independent living

• Economic self-sufficiency

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Jay Turnbull 1967-2009

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“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 home6

Road to Segregated Lifelong Living

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• 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

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What withstands the test of time ?Education – WHAT you know

Business/Politics – WHO you know

What did Jay teach us over 4 decades?

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Early Childhood

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Childhood Years

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Adolescent/Transition Years

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High School Education

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CRISIS!!!!

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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?

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“No matter how far down the wrong segregated road you go, if it’s the

wrong road – turn around”

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Failure to Achieve IDEA Outcomes

• Equality of opportunity

• Full participation

• Independent living

• Economic self-sufficiency

JT’s Weekly SupportsTime Mon Tues Wed Thur Fri Sat Sun

8-8:30 AM8:30-9 AM9-9:30 AM

9:30-10 AM10-10:30 AM10:30-11 AM11-11:30 AM11:30-12 PM12-12:30 PM12:30-1 PM1:30-2 PM2-2:30 PM2:30-3 PM3-3:30 PM3:30-4 PM4-4:30 PM4:30-5 PM5-5:30 PM5:30-6 PM6-6:30 PM6:30-7 PM7-7:30 PM7:30-8 PM8-8:30 PM8:30-9 PM

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Sisyphus from Greek mythology -- has to continually start over

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“Sisyphus” with reliable allies as partners

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Reliable Allies

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Group Action Planning

• Inviting support

• Creating connections

• Sharing great expectations

• Solving problems

• Celebrating success

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Inviting Support

Job

Preferences

Strengths

Com

mun

ity

Sch

ool

Frie

nds

Nei

ghbo

rhoo

d

Home

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Creating Connections

Home

Job

Scho

ol

Com

munity

Strengths

Preferences

Frie

nds

Neighborhood

http://www.youtube.com/watch?v=4h7cHv5Ulr0 http://www.youtube.com/watch?v=xUoOlkqo7-A

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Great Expectations

FRIENDS

NEIGHBORHOOD

HOME

JOBSCHOOL

COMMUNITY

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Solving Problems

ACTION PLAN

Weigh Options

VISION

Brainstorm Options

http://www.youtube.com/watch?v=MhY1Sn7gjoA

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Celebrating Success

• Celebrate Progress

• Acknowledge Group Members’ Contributions

• Develop the “Joy Quotient”

http://www.youtube.com/watch?v=PHIlJXNeRc4

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

Memorial Service Eulogy

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http://www.youtube.com/watch?v=MD5iSACBuRk

Memorial Service Celebration

JT’s Weekly SupportsTime Mon Tues Wed Thur Fri Sat Sun

8-8:30 AM8:30-9 AM9-9:30 AM

9:30-10 AM10-10:30 AM10:30-11 AM11-11:30 AM11:30-12 PM12-12:30 PM12:30-1 PM1:30-2 PM2-2:30 PM2:30-3 PM3-3:30 PM3:30-4 PM4-4:30 PM4:30-5 PM5-5:30 PM5:30-6 PM6-6:30 PM6:30-7 PM7-7:30 PM7:30-8 PM8-8:30 PM8:30-9 PM

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Church

Massage

Yoga

Sleep

Bkt/Lunch/Dinner

Personal Care

Speech Therapy

Work

Music Therapy

Leisure/Comm. Part.

Week at a Glance

Time Mon Tues Wed Thur Fri Sat Sun12-8:30 AM F H H H H H H

8-8:30 F H C1 C4 C1 C1 H8:30-9 AM C1 H C1 C4 C1 C1 F9-9:30 AM ST H C1 C4 C1 C1 F

9:30-10 AM ST H C1 C4 C1 C1 F10-10:30 AM MS H C1 C4 C1 C1 F10:30-11 AM MS YT C1 C5 C1 C6 F11-11:30 AM H H C1 C5 C1 C6 F11:30-12 PM JC JC JC JC JC C6 F12-12:30 PM JC JC JC JC JC C6 F12:30-1 PM JC CW JC JC CW C6 F1:30-2 PM JC JC JC JC JC C6 F2-2:30 PM JC JC JC JC JC C4 F2:30-3 PM JC JC JC JC JC C4 F3-3:30 PM JC JC JC JC JC C4 F3:30-4 PM H C2 H C5 H C? F4-4:30 PM H C2 H C5 H C? F4:30-5 PM H C2 H C5 H C? F5-5:30 PM H C2 FR C5 H C? F5:30-6 PM H C2 FR C3 C5 C? F6-6:30 PM H/MT/GF C2 FR C3 C5 C? F6:30-7 PM H/MT/GF C2 FR C3 C5 C? F7-7:30 PM MT/GF MT C3 C3 H C? F7:30-8 PM MT/GF MT C3 C3 H C? F8-8:30 PM H H H C3 H C? F8:30-9 PM H H H H H C? F9-11 PM H H H H H H/C? F

H – Housemate JC – Job Coach

F – Family C1-C6 – Companions

ST – Speech Therapist FR – Fraternity

MT – Music Therapist GF – Girlfriend

M – Masseuse CW – Co-Worker

Y – Yoga Teacher

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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.

Whatdid Jay teach us over four decades?

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“I shall be telling this with a sighSomewhere ages and ages hence:Two roads diverged in a wood, and JayJay took the one less traveled by,And that…made all the difference.”

Paraphrase from Robert Frost

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“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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