Insurance for children with special health care needs: Patterns of coverage and burden on families to provide adequate insurance

Objective. To update national estimates of insurance coverage for children with special health care needs (CSHCN) to reflect better the current economic and policy environment and to examine the burden on families and adequacy of coverage. Methods. I analyzed data on children who were aged 0 to 17 and included in the sample child files of the 2000 and 2001 National Health Interview Survey (NHIS). CSHCN were identified using a noncategorical approach. Various measures of insurance coverage type, premium contributions, unmet need for care, and out-of-pocket spending were compared for CSHCN and children without special needs across all incomes and stratified by poverty status. Results. Compared with other children, CSHCN had higher rates of public insurance (29.8% vs 18.5%), lower rates of private insurance (62.5% vs 69.1%), and a smaller percentage without insurance (8.1% vs 11.5%). More than 13% of low-income CSHCN were uninsured. Most (78.1%) families of CSHCN contributed to private insurance premiums. Family premium contributions for employer-sponsored insurance plans averaged $2058, or 4.4% of income; premiums for private nongroup insurance were higher ($3593) and consumed a larger percentage of income (6.6%). For children with insurance, rates of unmet need for specific services were relatively low, suggesting that insurance coverage was adequate. However, almost 20% of low-income CSHCN experienced some form of unmet need and of out-of-pocket spending was significantly higher for families with CSHCN compared with those without CSHCN. Conclusions. CSHCN are more likely to have insurance coverage, but among low-income CSHCN, lack of insurance remains a problem. In addition, the burden on families of CSHCN to provide insurance is greater, yet coverage purchased is not always adequate to meet the needs of many children and places addition burdens on families to pay directly for care.