According to the 2016 National Survey of Children’s Health (NSCH), over 19 percent of children in the United States from birth through age 17 are children and youth with special health care needs (CYSHCN). As this diverse group experiences (or may be at increased risk for) chronic physical, developmental, behavioral, or emotional health conditions, they rely on a wide range of supports to meet their health, education, employment, and other needs. However, gaining access to such supports can be a complex challenge for families as they navigate different health insurance and financial assistance programs; coordinate health services across primary care physicians, specialty care providers, and schools; and seek services that support inclusion in education programs, the workforce, and the broader community as young people transition into adulthood.

A substantial proportion of CYSHCN and their families struggle to access affordable and high quality services. According to the 2016 NSCH, nearly one-third of insured CYSHCN do not have adequate health insurance: The services they need are not covered, access to specialists is stymied, or out-of-pocket expenses for services are not reasonable. Similarly, 32 percent of CYSHCN had difficulties accessing a health care specialist when needed.28 The time and expense needed to care for CYSHCN can be substantial, making it difficult for families to manage and coordinate their children’s care. For example, the 2016 NSCH shows that 24 percent of families spend one to four hours a week coordinating and arranging services for CYSHCN. In addition to the difficulties of care coordination, nearly 14 percent of families of CYSHCN reported the need to cut back or completely stop working to meet their child’s needs.

The state in which a CYSHCN lives can make a difference in access to care, and the quality of care the child receives. While a vast array of different federal programs support CYSHCN—such as the Maternal and Child Health Services Block Grant (Title V) programs, the Individuals with Disabilities Education Act (IDEA), Medicaid, the State Children’s Health Insurance Program (CHIP), and the Supplemental Security Income (SSI) program—states often determine the eligibility criteria and requirements for receiving services. Beyond federal programs, states have different statutes and regulations that heavily influence how families care for CYSHCN, including family leave laws and statutes on guardianship, conservatorship, and supported decision making.

Given variations in the state policy landscape, it is no wonder that families report different experiences as they work to support their children. From state to state, the percentage of families of CYSHCN claiming adequate health insurance to meet the child’s needs ranges from 60 percent 79.3 percent. The percentage of families who report that their children have a medical home—to provide patient-centered care and coordinate services across health care providers—ranges from 31 percent to 57 percent across states.

Given this variation in experiences, state policymakers should consider improvements in how public agencies, funding sources, regulations, and other policies serve CYSHCN. Further, variations in state support point to the need for new tools to help parents and families of CYSHCN understand the costs and benefits of where they live. Such information could better equip families to advocate for themselves and their children.