Having gained historic victories in their push for greater public access, disabled activists are taking on a new demand for self-determination for those severely disabled confined to nursing homes. PNS contributor Mark O'Brien, a freelance writer and poet based in Berkeley, Ca., has been paralyzed from the neck down since childhood. O'Brien regularly reports on issues involving disabled people.

As President Clinton begins to tackle this country's monumental health care issues, disabled people are pressuring him to confront one of the most powerful lobbies in the health care industry -- nursing homes.

Many Americans believe that the issues of the disabled were largely resolved when President Bush signed the Americans with Disabilities Act in July 1990. The act mandates access to public transit and forbids discrimination in housing and employment. But these victories help only those disabled people who are already integrated into society. They ignore the 1.6 million more severely disabled Americans currently confined in nursing homes.

I lived in a nursing home in San Leandro, California, for two years. Paralyzed from my neck down, I was subject to the mercy of an overworked, underpaid staff. When a nurse dropped me from a lifting device as she juggled a radio in her other hand, or when other nurses put shampoo in the eyes of comatose patients, there was no one to whom I could complain. As long as Medicare, MedicAid and the insurance companies paid the bills, why should the administrators and doctors who ran the facility listen to me?

For years, the concerns of people like me have been overshadowed by those of our not-quite-so-disabled peers who also run most disabled organizations. But with the success of their drive for greater public access, the disability rights movement is taking up a new goal: self-determination -- more accurately liberation -- for the severely disabled forced to depend on institutional care.

The movement signalled its shift of goals when ADAPT -- the most militant of the disabled groups that won national attention for its bus sit-ins in the mid-1980s -- changed its name from Americans Disabled for Accessible Public Transit to Americans Disabled for Attendant Programs Today. "A liberation movement cannot create an alternative without attacking the plantation," says Wade Blank, one of ADAPT's founders, referring to the movement's new target: nursing homes.

What ADAPT wants is for states to offer disabled patients a choice between nursing home care and consumer controlled in-home care, both of which would be subsidized by MedicAid. This will require changing Title XIX of the federal MedicAid Act which requires states to spend 20 percent of their MedicAid grants on nursing homes. Blank says total costs would remain the same. But since most people would prefer consumer controlled in-home care, the change could mean less funds for the nursing home industry. (When I gained my liberation in 1978, the tab for my home care amounted to less than one-third of what the nursing home cost.)

The key phrase in ADAPT's campaign is "consumer controlled." Many states, such as New York, offer in-home care, but only through nursing agencies. This arrangement, which some call "the institution without walls," deprives disabled people of the power to hire and fire the attendants who care for them.

I can think of nothing more certain to deprive a person of his dignity and freedom than to be told who will feed and wash him. This arrangement also soaks the taxpayers because most of the money goes to the agency, not the people doing the work.

When ADAPT began to push for a national policy to promote in-home, consumer-controlled attendant care, activists predicted it would take eight to 10 years. Blank now believes the election of Bill Clinton has put the campaign five years ahead of schedule. He credits two ADAPT sit-ins with capturing Clinton's attention. The first, held in the Arkansas governor's office in December 1991, persuaded Clinton to examine his state's health care policy, whose dependence on nursing homes left little money for in-home care. The second demonstration shut down Clinton's San Francisco campaign headquarters last October, on the night of the final campaign debate. "We held 18 people hostage for seven hours by blocking the doors...To get out you'd have to crawl over 30 to 40 people in wheelchairs."

As a result of the demonstration, Clinton promised to appoint a task force to examine federal policies that "create a presumption in favor of institutionalization over in-home care." He promised to submit reform legislation on in-home care during his first hundred days as president.

Blank, who cautions that Clinton is "quite naive" about the political power of the nursing home industry, is already organizing an ADAPT civil disobedience action to take place in Washington 102 days after the inauguration.

"Politics is change by coercion," Blank says. "That's what ADAPT is."