Abstract
Special health care needs in the very young are on the rise. Understanding how health care systems provide service for these children is essential. We report on the prevalence of infants and young children with special health care needs (IYCSHCN), and delineate their access to health care, utilization, expenditures, and the financial impact on families. Using data from the 2001 and 2002 Medical Expenditure Panel Survey, we performed statistical analysis on the prevalence, demographics, utilization rates, expenditures, and out-of-pocket expenses for IYCSHCN to determine the impact on families, medical systems, and health care providers. An estimated 2.6 million children younger than 6 in the United States have special health care needs. These children have greater health care service needs as demonstrated by significantly higher utilization rates for all services. Although IYCSHCN were more likely to have a usual source of care, they were more likely than other children to have access issues. As expected, health care expenditures were markedly higher for IYCSHCN ($2923 per year) than those of their healthy peers ($770 per year). Families of IYCSHCN disproportionately felt the financial burden of health care, with more than 10% of families reporting out-of-pocket health care expenditures above $500 annually. The burden of disease and health care expenditures for families of IYCSHCN is substantial. Certain characteristics, such as having insurance, help protect families from high out-of-pocket expenses. Individuals who provide health care and educational services should be aware of the financial impact of service utilization and the issues faced by families in terms of access to care and out-of-pocket expenses. Health care policy changes may be necessary to ensure that needed care for IYCSHCN is accessible and affordable.