Financial costs hit home

A new study finds that families with children with special needs have different out-of-pocket expenses depending on the state they live in—and Illinois isn’t the best place to be.

An average of 93.39 percent of Illinois families have out-of-pocket expenses for their special needs child, ranking 47 out of the 50 states. The average out-of-pocket cost for Illinois families is $772.55 per year, ranking the state 25th in the country.

“Very rarely do studies look at what is the financial burden on families,” says Paul Shattuck, a professor of social work at Washington University in St. Louis who conducted the study. “The point of this (study) was essentially to establish this fact that there is variation from state to state.”

The study defined out-of-pocket expenses as those aside from an insurance premium. Because the United States doesn’t have a national insurance program, each state has different policies and services for families with special needs, which contributes to these differences. “Depending on where you live really makes a difference not only in terms of just the dollar amount you’ll spend, but what services are available to your child in the first place,” Shattuck says.

The next step, Shattuck says, is to determine why each state ranks where it does. In the meantime, he expects the numbers to get worse as insurance companies cut costs by having families pay more.

To prepare for this, Shattuck recommends families come up with a long-term plan for their special needs children. “A lot of these kids will need support or help for the rest of their lives,” he says. “It’s important to realize that this is a lifelong financial burden.”

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