Written by Hannah Harp
Spoon Feed
Children with special health care needs (CSHCN) who experienced discrimination based on their disability were more likely to forgo necessary outpatient care and have more ER visits and hospitalizations.
Discrimination within the health care system?
CSHCN may experience discrimination within the health care system by lack of physically or economically accessible care, low availability of providers with high-level knowledge around treating CSHCN, or disregard for reported symptoms. When adult patients with disabilities experience such discrimination, it erodes trust in the health care system and is associated with increase in forgone care and worse outcomes. This topic hasn’t been formally evaluated in the pediatric population until now.
This cross-sectional study analyzed 24,188 children with special health care needs (CSHCN) using 2021–2022 National Survey of Children’s Health data to assess whether disability-based discrimination is associated with forgone care. Among a weighted population of 14 million CSHCN, 11.0% experienced discrimination. These children had significantly higher odds of forgone health care (aOR 2.13; 95%CI 1.70–2.65) and emergency department visits (aOR 1.45; 95%CI 1.16–1.80) in the past year, indicating notable disparities in access to care. The source of this data is the National Survey of Children’s Health (NSCH), which does not stratify patients by type of special health care needs or severity of special health care needs. The survey is also completed by the parent or guardian referring to care received over the course of the past year, so it is susceptible to recall bias.
How does this change my practice?
The data are easy to believe but still eye-opening. I’m eager to see future qualitative studies that detail what kinds of discriminatory practices families have had to deal with so that I can start addressing those practices both personally and at a systems level.
Source
Disability-Based Discrimination and Forgone Health Care in Children With Special Health Care Needs. Pediatrics. 2025 Jul 1;156(1):e2024068782. doi: 10.1542/peds.2024-068782. PMID: 40456539
