UPDATE: State aid for special-needs kids varies dramatically

UPDATED TO CLARIFY: The study authors conducted two studies. The most recent study looks at the impact of state aid on low-income families with a special-needs child, and how much that aid varies nationally.

Low-income families who have a child with special health care needs strain under emotional, logistical and financial burdens. While the first two concerns are more or less universal, a new study shows that financial burdens vary from state to state.

Low-income special-needs families get hit harder than their affluent counterparts. Chart by WUSTL Publications.

More than a quarter of these families nationwide are spending in excess of 3% of their total household income on their child’s care. Indeed, about 26% of low-income families raising a special-needs child in Montana reported spending more than 3% of their total household income in 2004 and 2005. Only about 6% of families in the District of Columbia reported doing so.

That cost is on top of all other living expenses, including health insurance premiums, if any, say the study’s lead author Susan Parish, Ph.D., professor of social work at the University of North Carolina at Chapel Hill and Paul T. Shattuck, Ph.D., professor of social work at Washington University in St. Louis.

The pair analyzed 2005 and 2006 data involving 17,000 children nationwide. Researchers asked parents how much money had been spent out of pocket on their special-needs child in the previous 12 months.

The variable is each state’s eligibility standards for Medicaid and the Children’s Health Insurance Program (CHIP). State income caps vary from $19,350 to $67,725 for a family of four, according to the study. Families in states with higher caps suffered less, financially.
In a 2000-2001 study by Parish and Shattuck looking in part at straight dollar amounts, the hardest hit are low-income Georgia families with a child requiring special medical care. They spent an average $971.22 out of pocket extra each year. Best off were Massachusetts families, who paid an average of $561.97.

As for the number of families paying any amount out of their pockets for their special-needs child’s care, Mississippi is worst. An average of more than 94% paid out off pocket. On the other end of the scale was Michigan, where an average of 86% paid out of pocket.

A hypothetical unit of health care costs the indigent the same amount of money that it costs the affluent. The difference is that one unit is proportionately higher for the low-income, and more so for those raising a child with special health needs.

Parish and Shattuck recommend that aid for affected families should be more proportionate and more generous in order to avoid harming people already carrying significant burdens.