Children and Youth With Special Health Care Needs: A Profile

Abstract

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.