Access to Care for Youth with Special Health Care Needs in the Transition to Adulthood

Medicaid and State Children's Health Insurance Programs provide comprehensive care for children with serious, chronic health conditions such as cystic fibrosis, heart conditions and others. Many of these children lose access to health insurance and supportive services, however, when they reach age 18 or, in some states, 21. Various groups, such as the American Academy of Pediatrics, have issued guidelines concerning how Youth with Special Health Care Needs (YSHCN) should be transitioned into adult care services; however, these guidelines are by no means always followed.

The authors of this cross-sectional study, a survey of 77 graduates of a state program for children with special needs in California, examined whether youth had continued access to the necessary care. Specifically, the study quantified whether these youth had ongoing access to age- and disease-appropriate health care providers; and whether they had access to uninterrupted affordable health care.

Key Findings:

  • 24 percent of respondents reported lacking a usual source of care for their primary condition.
  • 27 percent had gone without some needed care since turning 21 and 39 percent had delayed or forgone care in the past six months.
  • 10 percent were uninsured at the time of survey, and 40 percent had experienced an insurance gap since turning 21; of the latter group, 55 percent had spent at least one year without insurance.
  • 52 percent of insured individuals had Medicaid.
  • Involvement in special education before the transition was associated with lower likelihood of negative transition events.

These results indicate that rates of unmet need and access are high in this group, relative to younger patients who might face similar health needs. The fact that having insurance, though associated with having a usual source of care, is not sufficient to guarantee access to needed health care and has many policy implications. The authors suggest that increasing access to Medicaid is important in this population, as is following larger cohorts of individuals with similar issues. Understanding how these youth fare in the adult health care system has enormous implications for understanding how such transition events affect morbidities, hospitalizations and other long-term health outcomes.