Health Care Insurance Adequacy for Children and Youth With Special Health Care Needs.

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US children and youth rely on insurance to access health care.1 Families living in or near poverty may qualify for public coverage with income thresholds for eligibility varying from 138% to 325% of the federal poverty level (FPL) across states.2 Other families may have commercial insurance through an employer or direct purchase.3 Families lacking insurance pay out-of-pocket for health care. The adequacy of insurance varies across insurance types,4 with some providing better coverage and access to care than others.5,6 Households with children and youth with special health care needs (CYSHCN) with low-to-middle income (ie, 200% to 399% of FPL) may be particularly sensitive to insurance variations, yet little is known about family perceptions of insurance adequacy.1,3 We compared these perceptions across insurance types for CYSHCN living in low-to-middle income families.We performed a retrospective analysis of 4321 responses of parents of CYSHCN aged 0 to 18 years in the 2016–2017 National Survey of Children’s Health, with family income that was 200% to 399% of FPL, representing 6 056 833 CYSHCN nationally. National Survey of Children’s Health uses the well-established and extensively used CYSCHN screener questions.7 CYSHCN with above-average use of health services, medications, and functional limitations were stratified as having greater health care needs.8 Family perceptions of benefits, coverage, referrals, and other health service aspects were compared across insurance types by using logistic regression, adjusting for age, race and ethnicity, and level of health care needs. For benefit adequacy, we included only families who reported the child had a specific need. The Boston Children’s Hospital Institutional Review Board waived review because the study did not meet criteria for human subjects research.Health insurance among CYSHCN in low-to-middle-income families included employer-sponsored (56%), public (22%), combination of public and commercial (9%), and direct-purchase commercial (3%); 6% had other types, including Tricare; 3% were uninsured; and 1% were missing. Thirteen percent of CYSHCN had greater health care needs. In general, family perceptions of insurance adequacy were highest for use of public insurance (Fig 1). The adjusted percentages of families perceiving that their child’s health insurance always offered benefits or covered services that met the child’s needs were 64% for public only, 56% for public-commercial combination, 51% for employer-sponsored, and 28% for direct purchase (P < .001). The adjusted percentages of families perceiving that their child’s insurance always allowed him or her to see the health care providers that he or she needs were 74% for public only, 68% for public-commercial combination, 70% for employer-private, and 48% for direct purchase. Perceptions of insurance correlated with health care needs. For example, a big problem to get specialist care was reported more often by families of CYSHCN with greater versus lesser medical needs covered by direct purchase (23% vs 5%, P = .02).The current study reveals new findings about insurance adequacy for CYSHCN from low-to-middle-income families. Family-perceived adequacy of their children’s health insurance varied substantially. Some families may have had inaccurate knowledge of the exact coverage offered by their insurance. In general, public coverage was viewed as most adequate. Families of CYSHCN with greater health care needs reported more problems with their children’s insurance, especially with direct purchase. Affordable, direct-purchase plans may have offered less coverage of needed health services for CYSHCN. Public coverage may indeed have better benefits than commercial for CYSHCN. In 1965, when Medicare and Medicaid were established, Medicare lacked long-term care benefits, in part because of concerns that good long-term benefits would cost too much. Medicaid served more as a safety net for low-income people, including many elderly people who enrolled also in Medicaid, which had more comprehensive long-term benefits, and CYSHCN insured by Medicaid can also use these benefits. Early and periodic screening, diagnostic, and treatment benefits were added to ensure availability of health services and treatments for disabling conditions affecting growth and development.This study highlights the importance of public coverage for CYSHCN, especially children living near poverty. Future investigation is needed to assess (1) how many CYSHCN living near poverty and covered by commercial insurance, especially direct purchase, meet income eligibility for enrollment in their state’s public coverage program; (2) how commercial insurers could match public coverage benefits and services; and (3) approaches to improve the adequacy of all insurance types. These efforts will strengthen US health care coverage for CYSHCN and their health care needs.We acknowledge Matt Hall, PhD, and Adams Bellows, BS, for their contributions to this work.