1. TRANSITION: War for Autonomy Institute on Development & Disability
Don Lollar, Ed.D.
University Center for Excellence in Developmental Disabilities (UCEDD)
Institute on Development & Disability

4. Isn’t that hyperbole—an exaggeration?
Why “WAR”?
Isn’t that hyperbole—an exaggeration?
After all, all youth go through it
Overwhelmingly society discourages independence, encourages dependence
Every step in transition is a challenge
Beginning from early childhood
Imperceptibly, habits are reinforced
Imperceptibly, foundations are built
Imperceptibly, expectations are groomed

5. Transitions from birth to death--questions
TRANSITION = CHANGE
Do expectations change with a disability?
Are relationships the same among family?
What is the path to successful transition?
Stay on course toward growing up
Recognize the battles in the war
Develop helpful skills and attitudes
Learn to cope with the difficulties
Presented by:
Date:

6. This process is a series of battles
Some families call it a “war”
Internal battles
External battles
With the struggles, there are “weapons” or tools you have to fight the battles
Distinguish “independent” from “autonomy”
Self-determination is the goal

7. Transition services in Oregon CAHMI Child Health Data—childhealthdata
Transition services in Oregon CAHMI Child Health Data—childhealthdata.org
Youth with special health care needs who receive the services necessary to make appropriate transition to adult health care, work, and independence
12-14 year olds % achieved
15-17 year olds 33.5% achieved
Number of functional difficulties (comunication, learning, self-care,…..) and transition
--1 functional difficulty 80.8% achieved
--2 functional difficulties 48.1% achieved
--3 functional difficulties 39.6% achieved
--4+ functional difficulties 20.8% achieved

8. Transition in Healthcare
Clinical report from AAP (2012)
Youth drift away from pediatric care with little planning or implementation for transition
Most practices do not initiate transition planning or offer transition services
Few tools to help assess readiness
Most adult physicians feel inadequately prepared to provide services
With increase in aging care, may be shortages of adult providers

9. Stay on course toward growing up: social and emotional
Physical and functional milestones; also:
Trust Birth-18 months
Trusting the world
Autonomy 18 months-3 years
Trusting self
Initiative years
Moving out from parents
Industry years
Taking on responsibility
Identity years
Uncovering who we are
Intimacy 18+
Being close

10. Now what is it we want?
Acknowledge IDD as part of the environment for the child/youth and their family
How are we helping in transition?
How can we help if we only have contact yearly?
For children and youth with special needs or disabilities, are we routinely mindful of being either a
Barrier, or
Facilitator toward successful transition?

11. Transition Outcomes To make decisions about: Where we go places
With whom we go friends
How we go travel/transport
How long we stay time
How we spend our time work/study/play
Where we live home/apt/house

12. Some of the Inside Battles: just like everybody - mostly
Meeting developmental milestones
Family developing shared expectations and working together to meet them
Objectively evaluating strengths and problems as you go along
Parents loving enough to let young folks make mistakes, even fail; young folks working to make better decisions
Expecting change for the better

13. Some of the Outside Battles
Figuring out who might help
Getting professionals to listen to families, parents, and young people
Getting professionals to coordinate their help
Getting community to see ability beyond their perceptions of difficulties

14. Tools/Weapons Inner resources of young person and family
Love
Limits
Support of family and friends
Support of caring and coordinating professionals
Systems that work together

15. Wouldn’t it be nice if… Agencies, schools, and doctors worked together
One agency/group was a single place where you started—IDD? School? Brokerage?
Parents or young people didn’t have to be case managers
One professional, along with the young person and their family, worked out a plan and other folks contributed as needed.

16. Who are the “we” that need to work together?
FACT
ARC
Schools
Brokerages
ODOTransportation
Housing
Parks and Recreation
SPD/DD Services
OHSU
UCEDD
OOCYSHN
CDRC
Office Family Health
DD Council
Vocational Rehab

17. Who’s in Charge?
Young folks and parents must call the professionals to be accountable for working together
Professionals must give up control to let young people and families be in charge—even in their own backyard.
This is a war, not for the faint of heart

18. What can we do?
Be aware of transition outcomes for all ages during each clinical visit
Start actual planning by age 14
Adult care model begins at 18
Establish a transition policy and use a standard planning tool
Include transition as a part of medical record
Be willing to go into battle with families

19. Moving Beyond Healthcare: Planning for Success

20. IDD Transition Workgroup
Kim Solondz, chair
Carol Criswell
Candace Ganz
Rhonda Eppelsheimer
Chuck Davis X Y z

21. Peace has one thing in common with its enemy,
With the fiend it battles, with war –
Peace is active, not passive;
Peace is doing, not waiting;
Peace is aggressive –attacking;
Peace plans its strategy and encircles the enemy;
Peace marshals its forces and storms the gates;
Peace gathers its weapons and pierces the defense;
Peace, like war, is waged.”

22. Peace=autonomy; War=dependence
“Peace has one thing in common with its enemy,
With the fiend it battles, with war –
Peace is active, not passive;
Peace is doing, not waiting;
Peace is aggressive –attacking;
Peace plans its strategy and encircles the enemy;
Peace marshals its forces and storms the gates;
Peace gathers its weapons and pierces the defense;
Peace, like war, is waged.” Walker Knight