Access to Health Care during the Transition to Adulthood for Youth with Disabilities

Elizabeth J. Gifford, Pennsylvania State University

The transition to adulthood is a critical period for all adolescents. During this transition,individuals make a series of decisions that have enduring effects on their post-secondary educational attainment, careers, residential independence and family formation. While the transition to adulthood is difficult for all youth, those who are exiting special education are faced with additional challenges. By definition, these students have disabilities that limit their ability to function in a regular classroom. These disabilities include a broad range of impairments such as learning disabilities, speech or language impairments, physical impairments (ex. orthopedic, health, visual, or hearing), cognitive impairments (ex. mental retardation, autism, brain injury), and emotional impairments. Among special education students there is great heterogeneity in the types and severity of impairments. However, special education students share a common concern. As they exit special education and enter adulthood, the impairment that limited their ability to function in a regular classroom may influence their ability to function in other settings such as work or social environments. In fact, the evidence suggests that youth who are exiting special education struggle during the transition to adulthood. Compared to the general population of youth, those exiting special education are less likely to attend post secondary school, have full-time employment, and to live independently (Blackorby & Wagner, 1996; Hogan, Sandefur, & Wells, 2001). Recognizing that youth exiting special education were achieving poorly, Congress enacted the Individuals with Disabilities Education Act of 1990 (IDEA). This legislation requires school districts to develop an individualized education plan (IEP) for all special education students. For older students, the IEPs must include a statement of the student’s ‘transition service’ needs. Transition services are a bundle of services that address an individual’s unique needs and promote his or her ability to succeed in post school activities such as post-secondary education, vocational training, employment, independent living, or community participation. For some students, health and/or mental health services help the youth to function in various settings and thus are an important component of the IEP. While previous research has focused on education, employment and residential outcomes for youth who have exited special education, little attention has focused on whether youth have difficulty accessing the health care system. Receiving health care services may promote successful adult outcomes for youth with diagnosed impairments. However, youth exiting special education have several risk factors that are consistent with difficulty accessing the health care system. First, for some students, the school district plays a large role in providing health services or connecting the youth to health services (Thomas, 1999). Once the youth exits special education, the school district is no longer responsible for providing services (Mornigstar, Lattin,& Sarkesian, 1998). Second, the socioeconomic characteristics of youth exiting special education suggest that they are at risk for lacking health insurance. Health insurance is an important factor in determining who receives health care services (Andersen, 1995). Risk factors for not having health insurance include being 18-24 years in age, being from a low- income family, and not working (Mills, 2002). These characteristics are consistent with youth who are exiting special education (Blackorby & Wagner, 1996; United States Department of Education. The Office Of Special Education Programs) The purpose of this research is to examine the transition to adulthood for youths who are exiting special education. In particular, this research is designed to describe and quantify the probability of having health insurance and changes in the pattern of health service use as youths exit special education. We will use secondary data to compare the experiences of adolescents who are exiting special education with a) other individuals who exiting special education and b) similarly aged adolescents in the general population. Information regarding the individual’s disability status (specific learning disability, speech or language impairment, mental retardation, serious emotional disturbance, multiple disabilities, hearing impairment, deafness, orthopedic impairment, other health impairment, visual impairment or blindness, autism, traumatic brain injury, deaf-blindness, no disabilities), health insurance status (privately insured, publicly insured or uninsured) and demographic characteristics (race/ethnicity, family income, family structure) at the time of exit are available from secondary data sources. Hazard modeling will be used to examine changes in the pattern of health services use conditional upon individual and family characteristics. Data This analysis uses information from three sources. The National Longitudinal Transition Study of Youth exiting Special Education (NLTS), conducted by SRI international, will serve as the primary source of information regarding youth who are exiting special education. The data include a nationally representative sample of 8000 youth who were 13 to 21 and in secondary school in 1985. The weighted sample generalizes to youth with disabilities nationally as a whole and separately to each of the 11 disability categories in use in 1985. Data collection occurred in 1987 and 1990. Information was obtained from multiple sources–telephone interviews with parents and youth, analyses of high school transcripts as well as surveys of teachers and principals. At baseline, approximately 800 of the sampled youth had exited secondary school. As these youth are beginning the transition to adulthood, they will constitute an important sample in our analyses. The second data source for this analysis will be the National Education Longitudinal Survey (NELS), conducted by the National Center for Education Statistics. This is a nationally representative sample of the 1988 8th grade class. The NELS gathered information from students, parents, teachers and school administrators through four waves of data collection. A previous analysis of this data indicates that approximately 12,490 individuals participated in each wave of the NELS (1570 of whom reported a disability)(Hogan et al., 2001). The final source of information that will be used for this analysis will be the 1979 National Longitudinal of Survey of Youth (NLSY), collected by the Bureau or Labor Statistics. This sample includes over 12,000 noninstitutionalized individuals who were between the ages of 13 and 21 in 1979 (Blackorby & Wagner, 1996). This sample has been interviewed every year since 1979. In order to compare youth from the NLSY with those who are in the NLTS, we will examine outcomes of youth in the NLSY over the 1979-1983 time frame. References Andersen, R. (1995). Revisiting the behavioral model and access to medical care. Journal of Health and Social Behavior, 36(March), 1-10. Blackorby, J., & Wagner, M. (1996). Longitudinal postschool outcomes of youth with disabilities: Findings from the National Longitudinal Transition Study. Exceptional Children, 62(5), 399-314. Hogan, D. P., Sandefur, G. D., & Wells, T. (2001). The transition to adulthood among young persons with disabilities. Mills, R. J. (2002). Health Insurance Coverage: 2001. Suitland, MD: United States Census Bureau. Mornigstar, M. E., Lattin, D. L., & Sarkesian, S. (1998). Answers to commonly asked questions about transition services and the individualized education program (IEP). Kansas: Kansas State Board of Education, Kansas Rehabilitation Services, The University of Kansas. Thomas, S. B. (1999). Health-care services for children with disabilities: Emerging standards and implications;. The Journal of Special Education, 32(4), 226-238. United States Department of Education. The Office Of Special Education Programs. Number of children served under IDEA, part B by disability and age during the 1999-2000 school year. Data Tables for OSEP State Reported Data.