PEDIATRICS Vol. 102 No. 1 July 1998, pp. 117-123

An Epidemiologic Profile of Children With Special Health Care Needs

Received Aug 29, 1997; accepted Jan 27, 1998.

Paul W. Newacheck^*, Bonnie Strickland, Jack P. Shonkoff^§, James M. Perrin, Merle McPherson^¶, Margaret McManus^#, Cassie Lauver^**, Harriette Fox, and Polly Arango^§§

From the ^* Department of Pediatrics and Institute for Health Policy Studies, University of California, San Francisco; the  Integrated Services Branch of the Maternal and Child Health Bureau; the ^§ Florence Heller Graduate School, Brandeis University; the  Ambulatory Care Programs at Massachusetts General Hospital; the ^¶ Division of Services for Children With Special Health Care Needs, Maternal and Child Health Bureau; ^# McManus Health Policy, Inc; the ^** Bureau of Children, Youth and Families, State of Kansas;  Fox Health Policy Consultants; and ^§§ Family Voices.

Objective.  To present an epidemiologic profile of children with special health care needs using a new definition of the population developed by the federal Maternal and Child Health Bureau.

Methods.  We operationalized the new definition using the recently released 1994 National Health Interview Survey on Disability. Estimates are based on 30 032 completed interviews for children <18 years old. The overall response rate was 87%.

Results.  Eighteen percent of US children <18 years old in 1994, or 12.6 million children nationally, had a chronic physical, developmental, behavioral, or emotional condition and required health and related services of a type or amount beyond that required by children generally. This estimate includes children with existing special health care needs but excludes the at-risk population. Prevalence was higher for older children, boys, African-Americans, and children from low-income and single-parent households. Children with existing special health care needs had three times as many bed days and school absence days as other children. An estimated 11% of children with existing special health care needs were uninsured, 6% were without a usual source of health care, 18% were reported as dissatisfied with one or more aspects of care received at their usual source of care, and 13% had one or more unmet health needs in the past year.

Conclusions.  A substantial minority of US children were identified as having an existing special health care need using national survey data. Children with existing special health care needs are disproportionately poor and socially disadvantaged. Moreover, many of these children face significant barriers to health care.

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