105 - Transition to Adulthood for Young Adults With Intellectual and Developmental Disabilities

Abstract

Individuals with intellectual and developmental disabilities (IDD) have experienced increasing life expectancy in recent decades and increasing numbers are entering adulthood and adult-based care. Health care transition (HCT) is defined as “the purposeful, planned movement of adolescents and young adults [AYA] with chronic physical and medical conditions from child-centered to adult-oriented health care systems” (Blum et al, 1993). The goal of HCT for AYA with IDD is threefold: to maximize lifelong potential, to ensure high-quality and developmentally appropriate health care services, and to continue services without interruption during the transition from adolescence to adulthood. HCT is particularly challenging for AYA with IDD due to their medical complexity and adaptive needs, as well as substantial differences between the pediatric and adult health care systems. Poor HCT planning is associated with fragmented care, decline in health status, and increased hospitalization rates. Pediatric providers play important roles in preparing AYA with IDD for changes in approach to care, availability of services, decision making, and insurance coverage as they enter into adult-based care. Transition resources are available to guide pediatric providers on how to help young adults plan for transition and how to hand off information such as medical and functional history to receiving adult providers. In the period of transition into adulthood AYA with IDD also experience changes in education and employment, sexuality, mental health, and housing options. Pediatric providers should address these issues and provide resources to help AYA with IDD and their families navigate through changes.