Children with special health care needs face challenges accessing information, support, and services

In this brief, Child Trends examines the most recently available comprehensive data on children and youth with special health care needs (CYSHCN) and their families. We find that, compared to their peers without special health care needs, CYSHCN, as a group, are more likely to experience circumstances that pose challenges to their well-being. The extent of the disparities we found suggests that CYSHCN and their families are at risk for adverse outcomes in economic, academic, and social-emotional domains—in addition to health. Moreover, racial and ethnic disparities in access to opportunities and supports exacerbate the inequities that CYSHCN and their families experience.

We used the 2016-2017 National Survey of Children’s Health (NSCH) to analyze national- and state-level data on access to and quality of health care and other types of services for CYSHCN in the context of the broader literature, including NSCH findings from previous years, U.S. Department of Education data on special education services, and Medical Expenditure Panel Survey (MEPS) data. In addition to our top-level findings, our analysis of data from all 50 states and the District of Columbia illustrates widely varying outcomes for CYSHCN, depending on the state in which they live.

Key Findings


  • CYSHCN comprise an increasing share of the U.S. child population (currently, about 1 in 5 children), and include some whose conditions will last throughout the life course.1
  • As a group, CYSHCN—in addition to their exceptional health care needs—experience other disparities relative to their peers without special health care needs (SHCN):
    • They face greater exposure to family poverty and other adversities.
    • Their parents are more likely to have difficulties with child care arrangements that require them to change jobs.
    • They miss more school days and are more likely to repeat a grade.
  • CYSHCN are slightly more likely than children and youth without SHCN to have health insurance coverage. However, despite the documented importance of a medical home for CYSHCN, this group is less likely than children and youth without SHCN to have this type of coordinated care (43 versus 50 percent, respectively).
  • Nationally, CYSHCN who come from wealthier families, live with two married parents, or live in homes where English is the primary language spoken are more likely to have a medical home than their CYSHCN counterparts who are less affluent, live without two married parents, or primarily speak a language other than English at home. These contrasts mirror those found for children and youth without SHCN.
  • State-level data suggest disparities in access to a medical home. In no state do more than 57 percent of parents of CYSHCN report that their child has a medical home; in some states, this percentage is considerably lower. The need for improvement notwithstanding, state CYSHCN programs have made notable progress in increasing access to a medical home for the populations they serve.
  • In 8 states, at least 1 in 20 CYSHCN reportedly had no health insurance during the past year. In contrast, nationally, about 1 in 34 children without SHCN was uninsured.
  • Our finding that non-Hispanic Black children are over-represented in the CYSHCN population warrants further investigation. The data could reflect the role of racism in contributing to health disparities, an identification bias, or both.