Disability-Based Discrimination and Forgone Health Care in Children With Special Health Care Needs

Experiences of disability-based discrimination in health care settings can harm patients by limiting access, which may lead to changes in health care use patterns. This study aimed to characterize disability-based discrimination in a nationally representative cohort of children with special health care needs (CSHCN) and evaluate its association with health care use, including forgone care.

This cross-sectional study of CSHCN used data from the 2021 and 2022 NSCH. Descriptive statistics compared key respondent demographics by exposure to disability-based discrimination. The primary outcome variable was forgone care in the past 12 months. Secondary outcomes included emergency department (ED) use and hospitalization in the past 12 months. A multivariable logistic regression determined the association of disability-based discrimination and health care use.

In a weighted sample representing 14 million US CSHCN (unweighted n = 24 188), 11.0% experienced disability-based discrimination. Children who experienced discrimination were more likely to have public insurance (42.5% vs 36.8%; P < .001) and have a disability impacting everyday activities compared with those who did not experience discrimination (87.8% vs 59.6%; P < .001). In a multivariable model, disability-based discrimination was associated with an adjusted odds ratio (aOR) of 2.13 (95% CI 1.70-2.65) of experiencing forgone care and an aOR of 1.45 (95% CI 1.16-1.80) of an ED visit in the past 12 months.

One in 10 CSHCN have experienced discrimination based on their disability. This discrimination is associated with over twice the odds of forgone necessary health care. Addressing disability-based discrimination may help improve health care access.