Caring for the disabled sets off costly spiral of woes

December 23, 2010

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THE BOSTON Globe’s three-part front-page series on the child Supplemental Security Income program (“The other welfare’’) and its Dec. 16 editorial (“Revamp SSI to help caregivers while discouraging abuses’’) neglected to tell the whole story about how families of children with disabilities are managing. It is exceptionally expensive to live with disabilities in the United States. Many expenses associated with caring for disabled children are not fully covered by insurance, or have high copays. So parents incur high out-of-pocket expenses to meet their children’s needs.

Across the United States, more than a quarter of low-income families’ expenditures — just for the health care costs of their child with disabilities — exceeded 3 percent of their gross income. Spending so much for their disabled children’s health care translates into deprivation, which extends even into middle-class families. In other research, we found that families of children with disabilities experience remarkably higher rates of housing instability, cut-off utilities, and unmet medical care needs compared to families of nondisabled children.

Before our leaders in Congress consider restricting child SSI benefits, they need to understand why deprivation and hardship are widespread among parents raising children with disabilities, even with the SSI program in place. Our research suggests program expansions are needed, not Draconian cuts that pit advocates of children with physical impairments against those with mental disabilities. The real question Congress should tackle is how it can improve supports to vulnerable families who shoulder immense financial burden.

Susan L. Parish
The writer is a professor of disability policy and director of the Lurie Institute for Disability Policy at Brandeis University.