Building Systems of Care: Findings From the National Survey of Children With Special Health Care Needs

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Approximately 1 of every 7 children younger than 18 years in the United States, or ∼10.2 million children, can be classified as having special health care needs.1 Children with special health care needs (CSHCN) are defined as those children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.2 Besides any limitations from their conditions, they are at greater risk for unmet health care needs,3 poorer dental health,4 and behavioral problems.5 Expenditures for their care are ∼3 times higher than for other children, accounting for ∼42% of all medical care costs for children.6 Until the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN), little was known about this population. The 2001 NS-CSHCN was the first large-scale study devoted to assessing the health and health care experiences of this population. This study was also one of the first surveys of children in which it was possible to derive state-level estimates. This supplement to Pediatrics is dedicated to findings from the second national study of this population: the 2005–2006 NS-CSHCN. Both the 2001 and 2005–2006 NS-CSHCN were funded and directed by the Health Resources and Services Administration's Maternal and Child Health Bureau (MCHB) and conducted by the Centers for Disease Control and Prevention's National Center for Health Statistics. The 2005–2006 NS-CSHCN was conducted from April 2005 to February 2007. This random-digit-dial telephone survey used the State and Local Area Integrated Telephone Survey platform to obtain approximately equal-sized samples of CSHCN from each state and the District of Columbia; therefore, the survey can provide both national and state estimates. All of the children younger than 18 years ( N = … Address correspondence to Michael D. Kogan, PhD, Health Resources and Services Administration, Maternal and Child Health Bureau, 5600 Fishers Lane, Room 18-41, Rockville, MD 20857. E-mail: mkogan{at}hrsa.gov