Engaging Adolescents and Their Families in Transitioning to Adult Care Care Transformation Collaborative of R.I. Deb Garneau, MA Jodie Neukirch, LCSW Suzanne McLaughlin, MD Joanna Brown, MD, MPH 11/12/15 Annual Learning Collaborative Primary Care Plus: Paving the Way

Transitions in Care: Rationale and Goals Adolescence is a time of cognitive, psychosocial and physical changes; and youth go from dependence upon parents to autonomy as adults. Youth with special health care needs face particular challenges as they transition from pediatric to adult health care. Design: This panel will offer the perspective of several Rhode Island experts in transitions of care for youth with special needs. Goals: Better understand the challenges these adolescents confront, and of tools and resources for optimizing their health care. Enhance the care we provide to help youth transition and expand the pool of health care providers who accept them.

A Youth with Special Needs A 17 year-old boy with insulin-dependent diabetes presents to your office for the first time. He also has a history of ADHD and depression and is on Prozac and Seroquel for sleep and mood regulation. He’s wearing a Foo Fighters T-shirt and black jeans and is paying more attention to his smartphone than to you. He’s been fighting a lot with his mother, who has always taken care of refilling his insulin and other medications and arranging doctor’s appointments.  

A Youth with Special Needs He’s been admitted to the hospital twice in the past three months for DKA because he’s sick of taking insulin. He is followed by a pediatric endocrinologist. His father is out of work and his mother is an executive secretary. She is worried about her job because of the time she’s had to take out of work to care for him. She thinks it might help him to go to a doctor’s office that’s not just for little kids and babies. He has an older brother and a younger sister.

Transition represents a time of changing support systems, moving from an entitlement system to an eligibility system.  Further, as an Employment First state, RI youth are expected to obtain meaningful employment.

Many of the most significant challenges in transition are not specifically health but rather involve social, financial, personal/independence issues including transportation, eligibility, housing, employment, independent living.

Gaining independence is a process (ie, semi-independent scenarios such as a sleepover at a friend’s home, able to speak for themselves if on a field trip, explain their condition to families / friends, taking own medication, etc.). Encouraging adolescents to be involved in community, school, and social activities helps them to explore their interests, strengths and weaknesses.

Everyone has an opportunity to use their time constructively Everyone has an opportunity to use their time constructively.  Involvement in creative activities, youth programs, religious communities, volunteer projects, and social opportunities is associated with successful transitions. Transition takes time including preparation and face-to-face time.  A person with a disability is foremost a person!

Transition involves a variety of individuals working together – the adolescent/young adult, their parents, their health care team, their school, and other organizations with which they are involved. The transition process should be a partnership between the adolescent/young adult, their family, and the care team. The adolescent/young adult and their family may need help to have a “voice” in their care.

Often, adolescents/young adults and their families are not aware of simple steps that they can take to help prepare for independence. Parents often need to help to understand their changing role – that they will still be an important part of their child’s care team, but that over time their role will change towards that of an advisor. Parents also need help to learn practical things they can do to help their child – such as teaching them how to fill a prescription.

The adolescent/young adult often needs to be empowered to take on a more active role in their health care. The process should occur over time, in an age appropriate manner, with each success leading to increased self-confidence and efficacy. Adolescents/young adults are often more capable than their parents or providers may think – but if they are never given the opportunity to show their ability, no one will know.