Health care transition for individuals with Down syndrome: A needs assessment

Transition to adulthood is a multifaceted process that requires integration of numerous domains within a young person's life, including their health care. For children with special health care needs, the transition process can be markedly more difficult to navigate. This is especially true for children with Down syndrome (DS) who receive fewer transition planning services. The aim of this needs assessment was to identify current trends, potential gaps, and areas for targeted intervention within the current transition landscape for individuals with DS. We utilized DS-Connect, a National Institutes of Health (NIH) funded family/self-advocate survey repository, as a platform to recruit respondents to the "Transition to Adulthood" survey. Sixty-five respondents (64 parents and 1 caregiver) completed the survey. Responses indicated that 42% of respondents reported comfort in the transition process, but 5% or less reported completing one of the core transition outcomes: transition readiness assessment, portable medical summary, or written transition plan. These findings translated across other domains of respondents' lives. While many individuals with DS and their caregivers are aware of the transition process, there appears to be a disconnect between the introduction of transition concepts and an actualization of transition outcomes necessary for success.