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

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

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:

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

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 37.7% 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

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

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 3-5 years Moving out from parents Industry 6-12 years Taking on responsibility Identity 12-18 years Uncovering who we are Intimacy 18+ Being close

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?

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

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

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

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

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.

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

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

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

Moving Beyond Healthcare: Planning for Success

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

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.”

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