“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 66045-7534

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

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

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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Enviable Lives?

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

wrong road – turn around”

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“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 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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Getting a Life through Fraternity Brothers

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Which One has a Significant Disability?

Getting a Life through Friends

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Job

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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

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Worship

Wellness

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Getting a Life through Friends

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Getting a Life through Friends

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Robert Wood Johnson Systems Change Project 1999-2007

Participant Direction

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Individual Budget Places the Individual and Family in the

Driver’s Seat!

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

Paraphrasing Joe E. Brown

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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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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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• Create corporation through Secretary of StateBuy expensive liability insurancePay 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

Bureaucratization of Jay’s Supports

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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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• Two forms not submitted on time

Phone Message on 1/7/09

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

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…

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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

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

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=MD5iSACBuRk

This little light of mine

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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W

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IATIN

G

• 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

Information Overload

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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.

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

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• Spirituality

• Daily care

• Teaching

• Getting services

• Lifespan changes

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https://kansasedu.qualtrics.com/SE/?SID=SV_3FeIqvIVepSrC3G

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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