A Mixed-methods Assessment of Health Care Service Access and Delivery to Youth with Special Health Care needs Attending Exceptional Student Education Schools in Duval County, Florida (p. 421-434)
Authors: Farheen Akbar, Jeffrey Alan Aenlle, Katryne Lukens-Bull, Allyson Hall and David Wood
Abstract: Adolescents with special health care and educational needs face significant obstacles as they age out of traditional child health care and education. Transition services is the term used to describe a set of services and supports designed to assist adolescents in adjusting to the change from school to work, home to independence, and pediatric to adult health care. This project partnered with 3 Exceptional Student Education Centers (ESE) as part of the Duval County Public School system to study the current health and social needs and health care transition needs of adolescents ages 16 to 22 years with complex developmental and health care needs. The study included a survey of parents of adolescents with special health care needs, in-depth key informant interviews and focus groups. A majority reported that their youth has a doctor or nurse who knows them well, a quarter indicated mental and dental services were needed. With respect to transition services, 60% of parents said that their adolescent’s health care provider discussed how health care needs would change as the youth approached adulthood. However, only 1/3 of parents had received information on obtaining health insurance or reported that a provider developed a plan to address changing needs. In-depth interviews and focus groups revealed barriers to care which included actual physical needs of the adolescents, cost of medications, difficult social environments and lack of coordination of services. Ideas for reforms of the system included campus health clinics and psychiatric consultation, and health care transition guides for parents.