Transition to Adulthood: Service Utilization and Determinants of Functional Outcomes
Principal Investigator: Paul Shattuck, PhD, PI
Funder: Organization for Autism Research
Timeframe: 01/01/09-12/31/10
Affiliation: Center for Mental Health Services Research (CMHSR)
Project Staff:
Project Contact: Paul Shattuck, PhD
(314) 935-7570
Project Update as of 09/30/09
Stage:
Description:
The transition from adolescence to adulthood is a challenging developmental turning point for all youth. This period is especially difficult for youth with autism. However, just when they need help the most, youth with autism face three major service-related risks: loss of entitlement for services as they age out of eligibility for special education; potential loss of health insurance coverage as they age out of eligibility for their parents’ private insurance or the State Children’s Health Insurance Program; and the shift to adult services systems (which have a different architecture, lack federal entitlements, and have fewer insurance options). How do patterns of service utilization change as youth with autism age into young adulthood? Are there disparities? Are there discontinuities? Are some patterns of service use associated with better functional outcomes in young adulthood? This study will examine these questions using longitudinal data on 922 youth with autism from the National Longitudinal Transition Study 2, a nationally representative sample that generalizes to all special education students in the autism exceptionality category who were in 7th through 12th grade and ages 13 through 16 on December 1, 2000. Data were collected every two years via multiple methods including parent/guardian interviews, youth interviews, teacher surveys, school program (IEP) surveys, school and community characteristics surveys, direct student assessments, and alternate student assessments. Findings from this study will be nationally representative and highly generalizable. Identifying underserved populations, barriers to service access, and factors that enable improved access will help target policy reforms and the design of new transition services. Understanding which services are strongly associated with positive outcomes will inform decisions about resource allocation for new programs.