Post on 27-Dec-2015
“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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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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