“Financial Burden of Raising Children With Special Health Care Needs (CSHCN): Association with state policy choices”

The study, which examines state Medicaid and State Children’s Health Insurance Program (SCHIP) policies, finds that the prolonged recession is deepening the financial burden for families with disabled children. Findings suggest that more than a quarter of low-income families with children with special health care needs, or CSHCN, spend more than 3 percent of their total household incomes to pay for their children's needs, such as in-home therapy or other services, adaptations to the home, wheelchairs and diapers.

Although federal regulations require that families living at or below the federal poverty level receive Medicaid and SCHIP coverage, states set their own income eligibility standards. Researchers found that, as a result, a family’s health care expenses vary widely by state. In 2005, for example, state income caps for SCHIP eligibility ranged from $19,350 to $67,725 for a family of four. According to the study, families living in North Dakota, Minnesota, Utah and Montana faced the highest out-of-pocket costs for children’s disability needs, whereas those living in Rhode Island and the District of Columbia were among those that spent the least.

The study -- which appears in the December 2009 supplement of Pediatrics, the journal of the American Academy of Pediatric -- was conducted by social work researchers at the University of North Carolina at Chapel Hill and Washington University in St. Louis. Data is based on a 2005-2006 national survey of more than 17,000 children with special health care needs.

Read the report.