Transition Planning for Youth with Special Health Care Needs

Results from the National Survey of Children with Special Health Care Needs

Children with special health care needs are dependent on uninterrupted medical care for their health and well-being. Almost 13 percent of children in the U.S. are classified as such and they account for a disproportionate share of health care expenditure. Due to improved medical treatments, a vast number of these children now survive into adulthood. This study presents findings on medical transition planning for adolescents with special health care needs moving into adulthood, from the perspective of their guardians or parents. Data were analyzed from the 2001 National Survey of Children with Special Health Care Needs.

The key findings of the study were:

  • Over 50 percent of parents or guardians had discussed their child's changing health care needs with their physicians.
  • The percentage of Hispanic respondents had a discussion rate that was considerably less than non-Hispanics.
  • Of the 50 percent who had discussed their changing needs, adolescents who met the criteria for having a “medical home” were more likely to have a transition plan and had fewer unmet health needs.
  • Older children (16-17 years) were more likely than younger teens to receive guidance and support regarding transition of medical care.

The results suggest that the overall rates of transition planning are relatively low. More efforts are needed to help children with special health care needs receive the services that they require.

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