A Toolkit for Transitioning to Adulthood with Down Syndrome

For teens with Down syndrome the transition to adulthood is often an exciting milestone signaling independence, responsibility and opportunity. To their parents, the same milestone may be described in very different terms: fear, worry and uncertainty. They are often overwhelmed with the number of choices to be made, and concerned about their child’s future.

On April 24, 2017, the Rapport, Empowerment, Advocacy through Connections and Health (REACH) Program at Children’s Hospital of Philadelphia held an event to help prepare teens with Down syndrome — and their families — to tackle the transition.

Transitioning from pediatric to adult healthcare presents many questions and concerns for most parents and teens, but there are specific challenges related to individuals with special needs. Bonds forged with long-standing pediatric providers will need to be established with unfamiliar, adult providers. It can take time to build a new foundation of trust and mutual respect. Complete and accurate medical records will need to be transferred. Financial preparations will need to be made, and transportation resources secured. Plans for further education or employment must be made, and matters of sexuality discussed.

More positive outcomes are expected when a person with a disability is involved in the transition process, as participation fosters a feeling of empowerment, encourages social engagement, and facilitates skill development. To develop greater independence, teens with Down syndrome should maximize the skills required to manage their own health and gain confidence in advocating for themselves. Expectations for active involvement can be adjusted to meet an individual’s developmental potential.   

In the REACH workshop, families addressed the issues related to planning the transition from youth to adulthood using a new toolkit. Developed by the Trisomy 21 Program, the toolkit helps engage teens in the transition process and facilitates self-promotion in healthcare. Feedback from parents was exceptionally positive, with all participants reporting they would definitely continue to use the toolkit with their teen or young adult at home.

If you're interested in obtaining a copy of the toolkit, ask your Trisomy 21 Program team. You can also find it here.