Health, education, work, and independence of young adults with disabilities.

PURPOSE

Healthy People 2010, the U.S. government's goal for a healthier nation, calls for improved data collection to understand the health status of relatively small population groups, such as young adults with disabilities. This study looks at the transition outcomes of graduates of pediatric systems of care for children with disabilities and chronic conditions.

METHODS

Young adult graduates of a state program for children with special healthcare needs and a specialty children's hospital were sent a mail survey that focused on their healthcare access and use, insurance status, health behaviors and perceptions, education, work, and markers of independent living. The survey was based on the , National Longitudinal Survey of Youth, Behavioral Risk Factor Surveillance System, the U.S. Census and other surveys done by the state and hospital programs. Experts in healthcare and school-to-work transition of youth with special needs, health and labor economists, independent living center counselors, program administrators, nurses, social workers, and physicians offered ideas on various versions of the instrument that were piloted on youth before mailing to graduates. A follow-up mailing was sent to all those who did not respond to the first mailing. Results from the surveys of these young people with special healthcare needs are compared with data on typical young adults to determine the disparities.

SAMPLE

Mail surveys were sent to all patients aged 18 years and older at the time of their discharge in the preceding fiscal (state program) or calendar (children's hospital) year. The response rate was 51%. Ninety-one percent of the respondents were Whites and 61% were women, with a median age of 21.1 years; 69% reported independence in activities of daily living. RESULTS AND DISCUSSION/CLINICAL RESULTS: Eighty percent of graduates reported having a usual source of care, but 42% used the emergency room compared with 25% of typical young adults. Twenty-nine percent had no health insurance and only 11% had insurance through their work. Only 44% of respondents were working compared with 56% of all 19 year olds and 72% of 18-29 year olds in studies of typical youth; 67% of those not working wanted to work. One great concern is the 26% who are not working, in school, or at home with children. Nurses working with children, families, and young adults can use the information to improve pediatric and adult healthcare systems and collaborate with educational, independent living, and workforce development agencies to improve transition to adult roles and responsibilities for young people with disabilities.