“Imagine All the People” – Revisiting Family Support Rud Turnbull ([email protected]) Ann Turnbull ([email protected]) 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

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”

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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.

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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).

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Jay Turnbull 1967-2009 5

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.

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High School Education (1983-1987)

• Vision for segregation • No research-based practice • Emphasis on leisure education, group home living, and sheltered employment

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Epiphany of Double Standard

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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?

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

“What Will You Do When You Fail?”

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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.

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JT’s Weekly Supports Time 8-8:30 AM 8:30-9 AM 9-9:30 AM 9:30-10 AM 10-10:30 AM 10:30-11 AM 11-11:30 AM 11:30-12 PM 12-12:30 PM 12:30-1 PM 1:30-2 PM 2-2:30 PM 2:30-3 PM 3-3:30 PM 3:30-4 PM 4-4:30 PM 4:30-5 PM 5-5:30 PM 5:30-6 PM 6-6:30 PM 6:30-7 PM 7-7:30 PM 7:30-8 PM 8-8:30 PM 8:30-9 PM Mon Tues Wed Thur Fri Sat Sun 13

Getting a Life through Fraternity Brothers 14

Which One has a Significant Disability?

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Getting a Life through Friends

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Job 17

Music

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Home of His Own

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Home of His Own

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Transportation

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Cheers Connections 22

Worship

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Wellness

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Getting a Life through Friends 25

Getting a Life through Friends

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

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.

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Paraphrasing Joe E. Brown

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

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Week at a Glance Time 12-8:30 AM 8-8:30 8:30-9 AM 9-9:30 AM 9:30-10 AM 10-10:30 AM 10:30-11 AM 11-11:30 AM 11:30-12 PM 12-12:30 PM 12:30-1 PM 1:30-2 PM 2-2:30 PM 2:30-3 PM 3-3:30 PM 3:30-4 PM 4-4:30 PM 4:30-5 PM 5-5:30 PM 5:30-6 PM 6-6:30 PM 6:30-7 PM 7-7:30 PM 7:30-8 PM 8-8:30 PM 8:30-9 PM 9-11 PM Mon Tues Wed

F F C1 ST ST MS MS H JC JC JC JC JC JC JC H H H H H H/MT/GF H/MT/GF MT/GF MT/GF H H H H H H H H H YT H JC JC CW JC JC JC JC C2 C2 C2 C2 C2 C2 C2 MT MT H H H H C1 C1 C1 C1 C1 C1 C1 JC JC JC JC JC JC JC H H H FR FR FR FR C3 C3 H H H

Thur

H C4 C4 C4 C4 C4 C5 C5 JC JC JC JC JC JC JC C5 C5 C5 C5 C3 C3 C3 C3 C3 C3 H H

Fri

H C1 C1 C1 C1 C1 C1 C1 JC JC CW JC JC JC JC H H H H C5 C5 C5 H H H H H

Sat

H C1 C1 C1 C1 C1 C6 C6 C6 C6 C6 C6 C4 C4 C4 C?

C?

C?

C?

C?

C?

C?

C?

C?

C?

C?

H/C?

Sun

H H F F F F F F F F F F F F F F F F F F F F F F F F F

Sleep Personal Care Work Leisure/Com m . Part.

Bkt/Lunch/Dinner Speech Therapy Music Therapy Massage Yoga Church

H – Housemate JC – Job Coach F – Family C1-C6 – Companions ST – Speech Therapist FR – Fraternity MT M – Music Therapist – Masseuse Y – Yoga Teacher GF – Girlfriend CW – Co-Worker

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Happy 70th Birthday, Rud! (9/22/07)

“Self-determination as practiced in Douglas County will no longer be permitted as of December 1, 2007.”

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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

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Paperwork Overload

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

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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

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Phone Message on 1/7/09

• Two forms not submitted on time

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

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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”

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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.

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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.

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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

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Imagine the Alternative to…

2. Annual recycling of person-centered planning

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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!

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Group Action Planning

• Inviting support • Creating connections • Sharing great expectations • Solving problems • Celebrating success

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Inviting Support 44

Creating Connections

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

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Great Expectations

HOME NEIGHBORHOOD FRIENDS JOB COMMUNITY SCHOOL

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Solving Problems

VISION Weigh Options http://www.youtube.com/watch?v=MhY1Sn7gjoA Brainstorm Options

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

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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.

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Imagine the Alternative to…

3. Thinking the waiting list is all there is

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Information Overload

• 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

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

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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

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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

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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

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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.

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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

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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

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Imagine the Alternative to…

4. Guess-timation of state priorities for addressing family needs

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Family Systems Framework

• Family relationships • Emotional health • Health • Economics • Social relationships • Recreation • Spirituality • Daily care • Teaching • Getting services • Lifespan changes

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

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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

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Imagine…

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