Disparities in healthcare transition services: Why don't youth with Autism Spectrum Disorder receive the services needed to transition into adult care and life?

Approximately 500,000 youth with disabilities make the transition from a pediatric to an adult provider each year. Healthcare transition services (HTS) assists this progression and enhances independence for youth with disabilities. However, there are no studies examining the prevalence of HTS among youth with Autism Spectrum Disorder (ASD). The purpose of this study is to contrast the prevalence of HTS among youth with ASD and those with other disabilities. This study used data on youth represented in the 2005-2006 National Survey of Children with Special Health Care Needs (n = 18,198). Adequate HTS was classified as having a discussion with your healthcare provider about: transitioning to an adult provider, adult healthcare needs, health insurance continuation and taking on more responsibility. Chi-square tests identified the proportion of youth with HTS and variation based on type of disability. Logistic regression models explored whether having HTS was associated with individual, family and health system variables. Youth with ASD received adequate HTS less often than youth with other disabilities (21.1% vs. 42.5%, p<.01). They were significantly less likely to receive discussions about: transferring to an adult provider, adult healthcare needs, and taking on more responsibility (p<.01). Predictors of adequate HTS differ for youth with ASD when compared to those with other disabilities and included only severity and system variables. Youth with ASD have a tremendous need for transition services but receive them half as often as youth with other disabilities. This disparity must be further examined and addressed by researchers, providers and family members.