Children and Youth With Special Health Care Needs: A Profile

BACKGROUND AND OBJECTIVES: The National Survey of Children's Health (NSCH) is the nation's primary source for data on children and youth with special health care needs (CYSHCN) and the only source for state-level estimates. We provide the latest estimates of CYSHCN in the United States, describe population characteristics, as well as the proportion that are served in a well-functioning system of care. METHODS: Data from the 2016, 2017, 2018, and 2019 NSCH were appended, resulting in a final analytic sample of 30 301 CYSHCN. Bivariate associations between the covariates and SHCN status as well as the 6 core outcomes that comprise a well-functioning system of care were examined using χ2 tests. Multivariable logistic regression was used to identify factors independently associated with SHCN status and a well-functioning system of care. RESULTS: The overall prevalence of CYSHCN was 18.8% and ranged from 13.6% in Hawaii to 24% of individuals included in the NSCH in West Virginia. The most reported type of SHCN was prescription medication use (29.3%), whereas 25.9% of CYSHCN had functional limitations. Over one-third reported no daily activity impacts, whereas 18.9% reported consistent or significant daily impacts. CYSHCN were more likely than non-CYSHCN to be male, older, non-Hispanic Black, live in poverty, and have public insurance but disparities by race and ethnicity and income were no longer significant after adjustment. Only 14.9% of CYSHCN were reported to receive care in a well-organized system. Rates were substantially lower among older and more heavily affected children with adjusted rate ratios for access to a well-functioning system of care, indicating a 72% reduction for adolescents (12-17), compared with young children (0-5) and a 24% to 53% reduction for those with more than a prescription medication qualifying need. CONCLUSIONS: CYSHCN remain a sizable and diverse population with distinct challenges in accessing well-functioning systems of care, particularly for those with the greatest needs. Our results provide a profile of the population designed to inform future surveillance, research, program, and policy priorities showcased in this Special Issue.