Thousands of Children with Special Needs Are Living in Nursing Homes

Thousands of children with special needs are growing up in nursing homes across the country and the number is slowly increasing, the Wall Street Journal reports.

While the Medicaid program guarantees long-term care for the disabled, many states have insufficient resources to pay for care at home. As a consequence, families with children who have severe disabilities are often forced to place their children in nursing homes primarily meant for the elderly in order for the children to get the care they need. The Centers for Medicare and Medicaid Services estimates that about 4,000 children nationwide are living in nursing homes, many against their parents' wishes.

These are children like Danny Shirey who has muscular dystrophy and spent six years in a Columbus, Ohio, geriatric nursing facility, starting when he was nine. "Compared to the other residents, I was healthier, physically and mentally," says Shirey, now 26.

Where home health care is available, the cost is substantially less than that of nursing home care. The University of Minnesota Research and Training Center on Community Living estimates that yearly community care runs about $26,000 a person versus $81,000 for nursing home care (based on rates in Georgia). But resources for home care are scarce. Some 93,000 people of all ages who have special needs are on waiting lists for home and community based services. A family may wait years for such services because there are simply not enough nurses, therapists and home health care workers to serve those in need. For these families, private insurance may not cover medical equipment, in-home nursing care or therapy '“ costs that could run as high as $50,000 a year, depending on a child'™s needs. Families are often left with no option but to place their child in a nursing home where care may be lacking or focused on the elderly.

Some states are moving to get the kids out of nursing homes. The Georgia legislature has developed a plan to move some 140 institutionalized children, of which 87 are in nursing homes, back to their families. Last year, Oregon lawmakers passed a law that will ensure Medicaid coverage for all severely disabled children living at home, regardless of income. The law will help 83 children in state nursing homes return home.

Although the Bush administration supports a system of home care, the Journal reports a slow increase in the number of institutionalized children. Acknowledging this increase, the Centers for Disease Control and Prevention has set a goal of 2010 for all children with special needss to be removed from 'congregate settings,' that is, facilities with four or more persons with special needs.

An online subscription is required to read the Wall Street Journal article, "Babes Among Elders: Nursing-Home Kids," which is available here.