A quarter of low-income Americans who have a child with a disability spend over 3 percent of their income to meet their child’s health needs, but how much a family spends can vary greatly depending on the state where they live.

Despite programs like Medicaid and the State Children’s Health Insurance Program (SCHIP), low-income families are reporting significant out-of-pocket health-related expenditures for a child with a disability. A family of four living at the federal poverty level is spending about $1,200 a year out-of-pocket on therapy, home modifications, wheelchairs, diapers and other health-related needs, according to the findings of a study published in the December supplement of the journal Pediatrics.

“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,” says Susan Parish, an associate professor of social work at the University of North Carolina and the lead author of the study. “These are costs above and beyond any health insurance premiums or co-pays.”

The study is an expansion on research Parish and Paul Shattuck, a Washington University in St. Louis professor of social work, released last year, which found that 91.2 percent of special needs families spend out-of-pocket to meet the needs of their child with a disability. On average, families spent $774 annually, but the cost varied by state of residence ranging from $560 in Massachusetts to $970 in Georgia.

To assess the situation for low-income families in the current research, Parish and Shattuck looked at data from more than 17,000 children in the 2005-2006 national survey of children with special health care needs. They found a correlation between the income eligibility level in a given state for Medicaid and SCHIP and the level of out-of-pocket spending that families were incurring.

In 2005, the maximum income level for a family of four to quality for SCHIP eligibility varied from $19,350 to $67,725, depending on the state.

The situation for low income families with a child with a disability was best in the District of Columbia, Hawaii and Rhode Island. Meanwhile, residents of North Dakota, Minnesota, Utah and Montana were more likely to spend a large percentage of their incomes on their child’s health-related needs.

Since the recession hit, many states have made cuts to Medicaid and SCHIP meaning the situation is likely more dire that the study reflects, Parish says.

“Families that are raising kids with disabilities are probably facing much greater burdens now,” she says.

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