'Chilling' Hardship Rates Among Families Raising Disabled Children

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'Chilling' Hardship Rates Among Families Raising Disabled Children

http://www.medicalnewstoday.com/articles/118595.php

Families with disabled children are struggling to keep food on the

table, a roof over their heads, and to pay for needed health and

dental care. But according to a new study from the University of

North Carolina at Chapel Hill, these challenges are now falling on

middle-income households and not just on poor families as previous

research has found.

These latest findings show that long-held federal standards for

identifying the nation's poor are not capturing everyone in need and

should be re-evaluated, especially for the financial effects on

disabled children, said L. Parish, Ph.D., the study's lead

investigator and an assistant professor in the UNC School of Social

Work.v " 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, " she

said. " We were shocked to find such high rates of hardship among

upper-income families. "

The study, which is based on 2002 data from the National Survey of

American Families, is being published in this month's journal

Exceptional Children. The survey analyzed 28,141 households.

The UNC study found that overall, families across all income levels

who are raising disabled children are significantly more challenged

by food, housing and health issues compared to families without

disabled children. Many also struggled to pay their phone bills.

Most surprising, Parish said, was data indicating that a significant

percentage of those struggling are higher-income households. Yet

based on federal poverty guidelines which have remained unchanged

since the 1960s and are used to determine eligibility for many

income, food, health and disability-related programs those same

households would not be classified as " poor, " she said. They also

would not qualify for assistance, despite the higher costs of raising

children with disabilities, Parish noted. In 2002, the federal

poverty level for a family of four was $18,100.

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, for

example) 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 ($54,300 and up for a family of four)

experienced housing instability, meaning they were unable to pay

their rent or had to move in with others.

" These results suggest that state and federal policies that are in

place to help families with disabled children are not going nearly

far enough, " Parish said. " They are not eliminating deprivation. And

these findings are particularly troubling now when the nation's

economy is struggling. Families raising children with disabilities

are likely to be hardest hit during this economic downturn. "

Though the study found that children with disabilities were more

likely to have health insurance and a usual source of care, they were

61 percent more likely than non-disabled children to have postponed

necessary medical care and 83 percent more likely to have postponed

needed dental care. The study didn't examine the causes for those

results, but Parish said they likely are related to the expenses of

obtaining care even with health insurance and other issues, such as

limited transportation.

The research results offer a compelling reason to expand eligibility

standards for federal programs designed to assist families with

disabled children, Parish said. Though more study is needed to

determine how best to assist these families, UNC researchers suggest

that increasing the income limits for food stamps, housing assistance

and federal Supplemental Security Income, which assists low-income

people with disabilities, would probably be a good start. Raising the

asset limit for Supplemental Security Income and Medicaid, the

federal insurance program for the poor and disabled, so that families

are not penalized for saving money in case of a hardship would also

help, Parish said.

" These families struggle to provide adequate care for their disabled

children, " Parish said, " and stronger supports are vital. "

University of North Carolina at Chapel Hill

210 Pittsboro St., Campus Box 6210

Chapel Hill, NC 27514

United States

http://www.unc.edu