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The “Nuts and Bolts” for a Person with Significant and Multiple Disabilities to Have The “Nuts and Bolts” for a Person with Significant and Multiple Disabilities to Have a Home of his Own: The Turnbull Family’s Experience Ann Turnbull ([email protected] edu) Rud Turnbull ([email protected] edu) Carolina Institute for Developmental Disabilities Carrboro, NC September 9, 2015

Jay Turnbull 1967 -2009 2 Jay Turnbull 1967 -2009 2

Epiphany of Double Standard 3 Epiphany of Double Standard 3

How many adults with significant disabilities do you know who have an enviable life How many adults with significant disabilities do you know who have an enviable life – one that you would want for yourself and your family? 4

“No matter how far down the wrong segregated road you go, if it’s the “No matter how far down the wrong segregated road you go, if it’s the wrong road – turn around” 5

“What Will You Do When You Fail? ” 6 “What Will You Do When You Fail? ” 6

Jay’s Adult Life Job Friends Cheers Connections Home of His Own Transportation Wellness 7 Jay’s Adult Life Job Friends Cheers Connections Home of His Own Transportation Wellness 7

JT’s Weekly Supports 8 JT’s Weekly Supports 8

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Job 11 Job 11

Home of His Own 12 Home of His Own 12

Music 13 Music 13

Friends 14 Friends 14

Cheers Connections 15 Cheers Connections 15

Girlfriend 16 Girlfriend 16

Jay’s Adult Life Job Friends Cheers Connections Home of His Own Transportation Wellness 17 Jay’s Adult Life Job Friends Cheers Connections Home of His Own Transportation Wellness 17

JT’s Weekly Supports 18 JT’s Weekly Supports 18

JT’s Weekly Supports H – Housemate Y – Yoga Teacher F – Family JC JT’s Weekly Supports H – Housemate Y – Yoga Teacher F – Family JC – Job Coach ST – Speech Therapist C 1 -C 6 – Companions MT – Music Therapist FR – Fraternity M – Masseuse GF – Girlfriend Y – Yoga Teacher CW – Co-Worker 19

What was the key to Jay’s enviable life? http: //www. youtube. com/watch? v=H 8 What was the key to Jay’s enviable life? http: //www. youtube. com/watch? v=H 8 N 7 u. VOQTDU 20

First House • Catalyst • Choice of house • Finances • Weekly schedule • First House • Catalyst • Choice of house • Finances • Weekly schedule • Housemates 21

Individual Budget Places the Individual and Family in the Driver’s Seat! The individual controls Individual Budget Places the Individual and Family in the Driver’s Seat! The individual controls the Medicaid allocation with assistance from a fiscal intermediary. $ 22

Who is the Participant in Participant Direction? • Participant acting independently on her/his own 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 Centers for Medicare and Medicaid Services (CMS) 23

Participant Direction Opportunities • Participant-Employer Direction ü Participant rather than a service provider agency Participant Direction Opportunities • Participant-Employer Direction ü Participant rather than a service provider agency carries out employer responsibilities to recruit, hire, and supervise workers. • Participant-Budget Direction ü Participant has the authority and accepts the responsibility to manage his or her budget. Centers for Medicare and Medicaid Services (CMS) 24

Second House • Catalyst • Choice of house • Finances • Weekly schedule • Second House • Catalyst • Choice of house • Finances • Weekly schedule • Housemates 25

Be in the dignity business! 26 Be in the dignity business! 26