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UNC study suggests financial burden deepening for families with disabled children

Findings from a new study indicate that the prolonged recession is deepening the financial burden for some of the country’s most vulnerable families.

The study, by social work researchers at the University of North Carolina at Chapel Hill and Washington University in St. Louis, Mo., shows more than a quarter of low-income families with disabled children are spending more than 3 percent of their total household incomes to pay for the children’s health-care needs.

For a family of four living at the federal poverty level, the costs add up to about $1,200 a year, said Susan Parish, Ph.D., an associate professor at the UNC School of Social Work and lead investigator of the study.


Dr. Susan Parish explains why a family’s state of residence affects their health care costs

“These are costs above and beyond any health insurance premiums or co-pays,” Parish said. “It might not sound like that much for families making $100,000 a year, but that’s a great deal of money for a family that only earns poverty level income.”

How much a family spends depends on the state where they live, said Parish, who wrote the study with Paul Shattuck, Ph.D, an assistant professor of social work at Washington University, and Roderick A. Rose, a UNC School of Social Work statistician. The study, which is based on a 2005-06 national survey of children with special health-care needs, appears in the December supplement of Pediatrics, the journal of the American Academy of Pediatrics.

The researchers analyzed data involving more than 17,000 children. They found a strong relationship between a family’s health-care expenses and the generosity of a state’s income eligibility policies for Medicaid and the State Children’s Health Insurance Program (SCHIP) – programs that are vulnerable to cuts as the economic climate has worsened and taken a toll on state budgets. Although federal regulations require that families living at or below the federal poverty level receive Medicaid and SCHIP coverage, states set their own eligibility standards. For example, state income caps for SCHIP eligibility in 2005 ranged from $19,350 to $67,725 for a family of four.


“These findings are based on data collected in 2005 and 2006 when the economy was going gangbusters,” said Parish. “The current recession makes the situation for families much worse. We must consider what families are forgoing if they are spending such a high proportion of their income on their children.”

Many are most likely struggling to pay for food and housing, she said. And with states cutting their Medicaid programs to make up for the billions of dollars in state budget shortfalls nationwide, “families that are raising kids with disabilities are probably facing much greater burdens now,” she added.

The out-of-pocket costs hit families the hardest in North Dakota, Minnesota, Utah and Montana, where Parish said the researchers found at least 23 percent of the states’ low-income families spend more than 3 percent of their household income to pay for needs such as in-home therapy or other services, adaptations to the home, wheelchairs or diapers. In comparison, fewer than 7 percent of families in Rhode Island and the District of Columbia spend the same amount for their disabled children’s needs. In North Carolina, nearly 16 percent of low-income families share a similar financial burden.

Download the report (pdf)

By Susan White