Independent Living's Real Costs

Going to bed is one of Richard Schneider's daily accomplishments.

With the movement he retains in his right arm and fingers, Schneider each evening turns the radio to softly playing jazz and guides his motorized wheelchair next to his bed. Morita, his black cat, looks on.

Schneider reaches up for a black remote control hanging by a cord from a motor that rides on a ceiling-mounted metal track. A metal clasp dangles from the device, and he hooks this onto the catch of a lightweight fabric sling he wears like a vest. With the remote control he operates the motor to lift himself in the sling out of his wheelchair and onto his bed. The maneuver ends as Schneider pulls up the bed covers up with a clawlike wooden stick. The whole process takes about half an hour.

Schneider, a 58-year-old retired research scientist, sums up his achievement simply: "I can go to bed when I want to go to bed."

Schneider lives on his own despite the effects of multiple sclerosis, an incurable, degenerative disease of the nervous system that over three decades has robbed him of movement in his legs, torso and left arm. He has never lived in a nursing facility, and now makes his home in the remodeled basement of a ranch house he purchased in 2001 in a semi-rural stretch of southern Howard County.

"Having other people do things I can do myself is not the way I want to live," said Schneider.

An array of social and technological improvements has sustained Schneider as his MS has advanced. Increasingly, people with severe disabilities are pursuing ways to avoid institutional care or the constant presence of a human caretaker.

That strategy "is eminently feasible," said Michael Dalto, administrator of Maryland's assistive technology program, which in four years has made 197 loans for equipment such as hospital beds, special computer keyboards and accessible vans. "It's beginning to happen more and more."

Independence advocates argue that federal and state governments should put more money into getting the disabled out of institutions, where an estimated 2.1 million reside, according to a five-year-old estimate from the San Francisco-based Disability Statistics Center. (More recent figures are hard to come by; the Bureau of the Census, for example, doesn't report the number of disabled people living in nursing homes or group homes.)

More than 80 percent of Medicaid money spent annually on long-term care goes to institutions, with community and at-home services getting the remaining 20 percent, according to advocates. They want federal legislation to let people with disabilities decide where they will receive government-funded services, rather than having the government direct most of its money for assistance to institutions.