Bridging Disciplinary Boundaries (January 11 - 14, 2007)

Purpose: An estimated one in five U.S. children is considered to have special health care needs, defined as chronic developmental, emotional, physical or behavioral conditions which necessitate health care and supportive services beyond those required by typically developing children. The costs of meeting the care needs of children with chronic or disabling conditions are disproportionately high relative to typically-developing children. The aim of this paper is to simultaneously test the contributions of individual and state policy predictors of financial burden in families with a child with special health care needs (CSHCN) using a multilevel regression analysis of national survey data that are also representative at the state level.

Methods: The National Survey of Children with Special Health Care Needs (NCSHCN) was conducted by the National Center for Health Statistics (NCHS) from October 2000 to April 2002, and randomly sampled approximately 750 families with CSHCN from every state and the District of Columbia, for a combined final sample of 38,886 children. The outcomes in this study were absolute financial burden (actual annual expenditures related to the child's health condition) and relative financial burden (annual expenditures per $1,000 of household income). Measures of state policy factors included annual per pupil public school expenditures and whether each state had a state supplement to the federal Supplemental Security Income (SSI) program in the year the survey was conducted. A two-part multilevel regression analysis was used to first estimate predictors of whether families had any caregiving costs, and then predictors of absolute and relative financial burden in families with caregiving costs greater than zero.

Results: Overall, 80.3% of families reported some caregiving costs. Among those with costs, absolute financial burden over one year averaged $757, whereas relative burden averaged $20 per $1,000 of household income. Factors associated with higher relative financial burden included having a young child or an adolescent (relative to a school-age child), living below 400% of the federal poverty level, being a single mother, having 4 or more years of college, and not having health insurance. Factors associated with lower financial burden included being Black, where taking medication was the only screener criterion met, not having a usual source of health care, and living in a state with an SSI supplement.

Families living in states with above-average per pupil spending and in states that supplemented the federal SSI program were significantly less likely to have any caregiving costs, after controlling for all child and family predictors. Families living in states with an SSI state supplement had significantly lower average relative financial burden.

Implications for policy: These findings empirically demonstrate the ameliorative effects of state policy choices with respect to the financial burden associated with caring for a child with special health care needs. Advocates and policymakers interested in reducing the high financial costs incurred by families raising children with disabilities could realize significant successes if they worked to increase the income transfer benefits provided to families, and the level of school spending.