Parents Want Cheaper Home Care, but Medicaid Pays to Institutionalize

Babes Among Elders: Nursing-Home Kids
Ronnie's Journey

By CLARE ANSBERRY
Wall Street Journal Online June 28, 2007; Page A1

COMMERCE, Ga. -- Ronnie Rivera, a 15-year-old in braided pigtails, sits in a wheelchair in a narrow hallway of Hill Haven senior-citizen nursing home. A half-dozen other residents, many with dementia and most four to six decades older, sit nearby. Around them, a maintenance worker mops the linoleum floor.

Ronnie has lived in this single-story red-brick building since she was 10 years old, the only child among elders. Her mother, Iris Rivera-Smith, has tried unsuccessfully for years to get the financial help she would need to bring her daughter home.
Thousands of other children are growing up in nursing homes across the country, many for the same reason as Ronnie. Federal disability insurance guarantees nursing-home care for the disabled. But in many states, its coverage isn't enough to let those people, children included, live at home -- even when the cost to taxpayers, and the strain on families, is often much lower.

Born legally blind, with club feet and cerebral palsy, Ronnie can't walk or speak. She can't feed or dress herself. But she responds to touch, smells and sounds, pounding her chest with her right hand and laughing when happy.
Latin music, the outdoors and her mother's voice make her happy.

Until five years ago, Ronnie lived at home and went to school with other developmentally disabled children. Then she had severe respiratory problems.
Her lungs filled with fluid and she almost died. Doctors told her parents that Ronnie should go to a nursing home to receive 24-hour care for the few weeks she was expected to live.

Ronnie outlived expectations and remains here, more than 100 miles from her home. She doesn't go to school. Her world consists largely of the home's long corridors, its atrium with a big-screen TV and her room, with its cinder-block walls painted blue.

About 4,000 children nationwide live in nursing homes, according to Medicaid -- a small, often hidden population that has wound up in these incongruous settings, often against their parents' wishes. While some of the homes cater to children, many are traditional facilities designed for the aged. Their staff may dote on young residents but are often more familiar with geriatrics and dementia. Visits to family may be limited: Nursing facilities often give away residents' beds if they spend more than 10 nights a year away from the home.

"Any child in a nursing home is so outrageous -- it offends the sensibilities," says Ruby Moore, executive director of the nonprofit Georgia Advocacy Office, a federally chartered group that supports the disabled.

But for these families, there is often no alternative. Parents may seek help after their disabled child suffers a life-threatening emergency, or a divorce leaves a single working parent without time or resources for child care. Depending on what institutions are located near the family, a child may be sent to a group home, a state or private school or, often in the case of the most severe disabilities, to a nursing home. A total of about 26,400 children are in out-of-home facilities across the country.

Home care isn't an option for many parents. Medicaid, the federal-state program that insures people with low income or disabilities, automatically pays for nursing homes. It's up to individual states to decide how much they will pay for in-home services. Few states fund the level of skilled care such patients require, leaving parents with a burden that can run tens of thousands of dollars annually. Nationwide, there also aren't enough home-care workers, nurses and therapists to serve these families. About 93,000 developmentally disabled Americans of all ages are on waiting lists for home and community-care services.

When home care is available, it typically costs taxpayers less. Georgia spends about $81,000 a year for each resident in institutional care, which includes nursing homes. Home and community care, by comparison, costs about $26,000 a year, according to the University of Minnesota's Research and Training Center on Community Living.

"We simply don't do enough to support families to care for their children with significant disabilities at home," says Eric Jacobson, executive director of the Georgia Governor's Council on Developmental Disabilities. To begin to address the issue, last year Georgia's state legislature committed
$48 million to programs for the disabled, including a plan to move more than 140 institutionalized children, including 87 in nursing homes, back to their families.


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