Families face "chilling hardship"

A new study by the University of North Carolina at Chapel Hill has found "chilling hardship" among families who have children with disabilities.

Even among middle-class families, special equipment and child care cause hardship. Government programs help some families, but not enough, and the way we figure poverty levels in the United States -- which is what we look at to determine whether families get financial help -- are hopelessly outdated.

The poverty level was developed nearly a half century ago, and it was never meant to be what it has become. The poverty level is based on the cost of groceries because back in the early 1960s, families spent about one-third of their budget on food.

That has changed, of course, but the way the government figures poverty has not. People at three times the income of the federal poverty level are struggling to pay for housing, utilities and other necessities.

If those same people have a child with disabilities, it becomes even harder.

One family I know well has a son with Down syndrome and autism. Before he could have his teeth cleaned, he had to be sedated. That sent the cost of a simple cleaning to about $3,000, and the family's insurance policy didn't cover it.

"The bottom line is that U.S. families raising children with disabilities are reporting severe hardships at rates that are chilling, including families that are solidly middle-class," said Susan L. Parish, Ph.D., the study's lead investigator and an assistant professor in the UNC School of Social Work. "We were shocked to find such high rates of hardship among upper-income families."

According to the study, 40 percent of the surveyed families with disabled children who earned between two to three times the federal poverty level (between $36,200 and $54,300 for a family of four) experienced at least one food hardship, including worrying that food would run out or skipping meals because of a lack of money. Fifteen percent of families with incomes at three or more times the federal poverty level experienced housing instability, meaning they were unable to pay their rent or had to move in with others.

My friend Liz Huesemann is director of a center that cares for people with disabilities. I e-mailed her a copy of the press release. Several hours later, she e-mailed me back to tell me the word "chilling" stayed woth her all day.

"I know how expensive these things can be," she wrote. "Equipment that is needed is so expensive . Examples: wheelchairs, standers, specialized spoons, ets. I do not know how families can afford these things."

Until a generation ago, parents were encouraged to place their children with severe disabilities in institutions. Now, children with disabilities live at home, which is where they belong. But the government still abandons them and their families.