"This is one of the few studies that focuses on families' costs when caring for children with special needs, rather than the overall cost for society as a whole," he says.
The study's authors ranked all 50 states and the District of Columbia, using survey data from 2000 and 2001, in terms of the average percentage of special needs families that shoulder an additional financial burden, the yearly average extra costs of those families and the size of these costs relative to family income.
"The overall percentage of U.S. families caring for children with special needs that experience an added financial burden was 91.2 percent," Shattuck says. "This group faced average extra out-of-pocket care costs of $774 per year for expenses related to their child's special needs."
Shattuck and his co-author, Susan L. Parish, Ph.D., assistant professor of social work at the University of North Carolina at Chapel Hill, note that wealthier states tend to have a smaller proportion of families with any financial burden and a lower average extra cost for caring for a child with special needs.
"At the low end, families in Mass. paid an average of $560 for out-of-pocket medical expenses," Shattuck says. "At the high end, families in Georgia shouldered an average of $970 in additional care expenses.
"This study shows that programs like Medicaid and the State Children's Health Insurance Program (SCHIP) may not be going far enough to help families with children with special needs. We need to revisit how to give appropriate support to poorer states where families, on average, have less income but are experiencing greater financial burden compared with families of similar means in wealthier states."
The researchers used data from a national telephone survey of households with children who have special health care needs, including a representative sample from each state and the District of Columbia. The National Institute of Child Health and Human Development provided partial support for this study.
Shattuck's upcoming research includes studies on how raising special needs children impacts family asset building and how to determine what policy changes need to be made to help families pay for current care and save for future care.