Barriers to transition to adult care for youth with intellectual disabilities (pp. 575-584)
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Authors: Laura Pickler, Yvonne Kellar-Guenther, and Edward Goldson
Abstract: Youth with special health care needs (YSHCN) have historically experienced difficulty when transitioning to the adult medical system. Interventions to assist in transition have been implemented more recently. However, the transition experience of youth with intellectual disabilities (ID) is not well documented. Objective: To identify barriers and illuminate preferences of youth, their families, and physicians when transitioning youth with intellectual disabilities (ID) from pediatric to adult healthcare. Study Group: Transition aged youth with ID. Methods: Focus groups were conducted followed by analysis using a grounded theory approach allowing open ended discussion to problem solve barriers and minimize bias. We held nine focus groups across the state of Colorado targeting a rural, urban, and suburban community. Results: Four core barriers to transition were identified: (a) pediatricians expressed that it was easier to continue to care for ID patients in the pediatric system, (b) failure of the medical system to distinguish between biological vs. developmental age, (c) unavailability of adult health care providers and specialists to transition to, and (d) perception that adult physicians are not equipped to treat adults with ID. Conclusions: There remain significant barriers for patients with ID. Education of both pediatric and adult providers to help facilitate transitions for this patient population is needed. The timing of the transition process for youth with ID should be individualized.
