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 State Transition Results for Youth with Special Health Care Needs

By Peggy McManusPeggy McManus
President
The National Alliance to Advance Adolescent Health

Katherine Rogers
Senior Policy Analyst
The National Alliance to Advance Adolescent Health

Nationally, less than half of all youth with special health care needs successfully transition from pediatric to adult health care. A new report, “Health Care Transition for Youth with Special Health Care Needs,” commissioned by Got Transition, the National Health Care Transition Center, examines state and national performance on the transition outcome measure. Prepared by the National Alliance to Advance Adolescent Health, this study presents detailed state information about the factors that affect our low national ranking and account for extensive state variation. The report is based on data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) and the Current Population Survey (CPS).  

Key Findings  Katherine Rogers

While only 41 percent of youth with special health care needs in the United States receive the services necessary to make transition to adult health care, work, and independence, this proportion is even lower among youth who are Hispanic or Black, with family incomes below 200 percent of poverty, and who are uninsured or publicly insured. In addition, males are less likely than females to transition successfully, and those without a medical home are at a significant disadvantage. Among the component measures used to assess the transition outcome, more than a third of youth need but have not had conversations with their health care providers about changing health needs, and more than a quarter of youth need but have not had discussions with their health care providers about transferring to adult health care providers as they get older. More than a quarter of families report that their child’s health care providers seldom if ever encourage the youth to take increasing responsibility for his or her own care. Finally, two-thirds of families report that a conversation on maintaining or securing health insurance for their adolescent as he or she gets older is needed, but has not happened.  

States demonstrate significant variation on the overall transition outcome – ranging from 24 percent to 54 percent of youth meeting the outcome measure – as well as on these four component measures. As is the case for national performance, youth fare worst on the component measure for discussions about maintaining health insurance.  

The report also includes results from a multivariate analysis examining the associations between the dependent variable of state transition performance and states’ demographic attributes, including adolescent poverty, non-White race, and uninsurance. States’ proportion of adolescents seeing a pediatrician (rather than a family physician) was also included in the analysis. All of these associations were statistically significant and negative.  

Implications  

The report’s findings point to a number of important implications. Nationwide, significant improvement is needed to ensure more youth with special health care needs successfully transition to adult health care and independence. Investment in medical homes and expanded insurance coverage will offer significant returns in improving the transition process. Additionally, further research exploring the racial, ethnic, and income disparities in health care transition is needed and can illuminate additional strategies for improving outcomes for youth with special health care needs nationwide.  

The full report is available online at www.gottransition.org and provides detailed tables and maps illustrating national and individual states’ performance on the outcome and component measures, as well as selected demographic indicators. The authors can be reached at krogers@thenationalalliance.org