ArticleJournal of pediatric rehabilitation medicine2026
Parents of youth and young adults with intellectual and developmental disabilities: Barriers experienced during transition.
Article in Journal of pediatric rehabilitation medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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3 authors.
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Abstract
PurposeThe purpose of this study was to explore the experiences of parents of youth and young adults with intellectual and developmental disabilities who have undergone the transition from pediatric to adult healthcare as well as community-based transition and adult-focused services to better understand the barriers faced when individuals transition.MethodsEleven parents were recruited via email flyers and research information sheets, which were distributed to parent support/disability advocacy groups that are community partners of the Children's Hospital Los Angeles University Center for Excellence in Developmental Disabilities. The study interview guide consisted of 11 open-ended questions. The questions were designed to explore experiences with their youth and young adults' health care transition experience. Question items pertaining to barriers (five questions) with community-based services identified during the transition process are reported in this paper. All interviews were conducted via phone, audio-recorded, and transcribed.ResultsAnalysis of the data generated four major themes with subthemes. The day programs theme consisted of four subthemes: a) do not know what programs are available; b) lack of staffing; c) day program not appropriate; and d) waitlist. The education theme included four subthemes: a) no transition support provided; b) transition support not adequate; c) vocational training inadequate or not available; and d) need for adult supervision. The employment barrier theme contained three subthemes: a) loss of benefits; b) transition support not provided; and c) lack of accommodations or lack of options. The independent living barrier was composed of six subthemes: a) lack of resources; b) public benefits take a long time; c) self-determination services still inadequate; d) no transportation available; e) need to know to ask for services; and f) challenges pertaining to conservatorship.ConclusionThe findings revealed parents encountered numerous barriers to assisting their youth and young adults in assessing educational, employment, and community living services. The analysis supports the findings from previous studies and provides new insights and understanding.
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