Objectives: To provide the first nationally representative data on total health care expenses, out-of-pocket health care expenses, and information on the extent to which out-of-pocket expenses are financially burdensome for families of children with special health care needs (CSHCN). To also compare utilization and expenditure patterns for children with and without special health care needs.
Design: We used data from the 2000 Medical Expenditure Panel Survey (MEPS). We present univariate, bivariate, and multivariate statistics on utilization and expenditures adjusted for the complex sample design.
Participants: The 2000 MEPS data set contains 6965 children younger than 18 years. Using the CSHCN definition adopted by the federal Maternal and Child Health Bureau and operationalized using the CSHCN Screener, 949 children (15.6%) were identified as children with special health care needs.
Main outcome measures: Compared with other children, CSHCN had 3 times higher health care expenditures (2099 dollars vs 628 dollars; P<.01). The 15.6% of CSHCN accounted for 42.1% of total medical care costs (excluding dental costs) and 33.6% of total health care costs (including dental costs) attributed to children in 2000. Families of CSHCN were best protected against inpatient hospital care expenses and most exposed to dental care expenses. Families of CSHCN experiencing high out-of-pocket expenses (exceeding 5% of family income) were approximately 11 times more likely to be from households with incomes below 200% of the federal poverty level (odds ratio, 10.9; 95% confidence interval, 3.55-33.76) than to be from families with incomes at or above 400% of the federal poverty level.
Conclusions: Families with CSHCN experience much higher expenditures, including out-of-pocket expenditures, than other children. Insurance plays an important protective role for families of CSHCN, but it still provides incomplete protection. Health policy changes that would extend the breadth and depth of insurance coverage are needed to ensure that all families of CSHCN are protected against burdensome expenses.