33 - Health Insurance Experiences Among Children and Youth with Special Healthcare Needs
Sunday, April 26, 2026
9:30am - 11:30am ET
Publication Number: 3030.33
Amanda Gatewood, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Amanda K. Gatewood, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Jessica Edgar, Ann & Robert H. Lurie Children's Hospital of Chicago, Darien, IL, United States; Ryan Coller, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States
Pediatric Health Services Research Scientist University of Wisconsin School of Medicine and Public Health Madison, Wisconsin, United States
Background: Most insured adults in the US experience health insurance problems, particularly those in poorer health. Nearly half of problems remain unresolved, resulting in foregone care, unexpected costs, and health declines. Only about 2/3 of children and youth with special health care needs (CYSHCN) have adequate insurance coverage and many CYSHCN families struggle with medical expenses. Common insurance problems include limited provider access, delayed/denied pre-authorizations, and denied claims. Objective: This study examines health insurance problems among CYSHCN, including coverage changes, problem resolution, and health outcomes. Design/Methods: Cross-sectional analysis of nine-site Family CIRCLE cohort data from 315 CYSHCN caregivers. Insurance variables were adapted from the KFF Survey of Consumer Experiences with Health Insurance and included payor type, coverage changes, services used, problems, resolution, and satisfaction. Univariate and bivariate (χ² tests) statistics compared items by social and economic characteristics and payors. Results: CYSHCN were covered by private (36%), public (41%), or both public and private (22%) insurance. Over 12 months, 15% lost or changed their insurance and 97% used a health service. Over half of families (59%) reported insurance problems (higher for private payor, p=0.009); 28% said insurance paid less than expected (higher for private payor, p< 0.001). Insurance limited provider access (29%), delayed or denied prior approvals (27%), and did not cover prescriptions or required a high copay (22%). CYSHCN with insurance problems experienced delayed care (18%; higher for private payor p=0.019), higher expenses than expected (25%), denied care (18%), problems paying medical bills (14%), and health declines (7%).
Only 26% of these problems were resolved to the caregiver’s satisfaction (lower for private payor p=0.049). Among unresolved problems, 71% of caregivers gave up seeking resolution. Those with insurance problems rated their insurance lower (p=0.015), with fewer Excellent/Good ratings for Private insurance (68%) than Public (82%) and Public/Private (86%) coverage (p < 0.001).
Conclusion(s): CYSHCN families often face insurance problems, including care delays/denial and financial burden. Private insurance was associated with problems and lower satisfaction than public or hybrid options. Strengthening insurance adequacy and policy safeguards for CYSHCN is critical to ensure access to medically necessary care without unresolved coverage issues or high out-of-pocket costs. Future research should measure the impact of insurance problems on child health outcomes.
