On September 17, one of the longest, and arguably the most arduous, marches in the history of civil rights rolled into Washington, DC, and chances are you didn’t hear about it. The participants had traveled 144 miles, from Philadelphia’s Liberty Bell all the way to the Capitol Building, under the banner “Free Our People,” to protest the fact that 2 million individuals are locked away in this country.
They were not talking about the prison industrial complex or people who have broken the law-unless you consider being physically disabled or getting old a crime. Today 1.7 million people are living (or “warehoused,” as the marchers would say) in nursing homes while 300,000 more are assigned to ICFMRs (Intermediate Care Facilities for the Mentally Retarded) and other residential facilities. Ask around and people will tell you that virtually no one wants to live in these places, but they do not have a choice.
The marchers took to the road to change this by raising awareness about MiCASSA (the Medicaid Community-Based Attendant Services and Support Act), legislation that would amend the Social Security/Medicaid Act and create an alternative called Community Attendant Services and Support. As it stands, we spend $82 billion a year on Medicaid long-term care, 70 percent of which ($57 billion) goes to institutional services. While allotting money to these institutional programs is federally mandated, states are not required to provide home-based alternatives, and many don’t. As a result, hundreds of thousands of physically disabled and elderly people are forced to leave their homes and communities in order to receive care.
The marchers, who desperately want to change this, are up against a formidable opponent. America has around 17,000 nursing homes, two-thirds of which are for-profit ventures. Despite what their lobbyists say, profits are far healthier than patients: often between 20 and 30 percent. A 1998 study determined that for-profit facilities deliver worse quality care than their nonprofit and public equivalents: that year inspectors cited for-profit facilities for deficient care 46.5 percent more frequently than nonprofits.
Between corporate cost-cutting and state budget-slashing, patients get squeezed. Homes skimp on such essentials as food and sanitation, and most are understaffed. Nurses and caretakers typically earn about $8 an hour for work that is both emotionally and physically exhausting. In light of this, supporters of MiCASSA also insist that attendants receive a livable wage and benefits. Even with this stipulation, home-based care is less expensive than long-term institutional care. And, of course, the benefit of living with dignity in one’s own home in priceless.
I caught up with the marchers on their last night, when they were gathered outside the Israel Baptist Church in DC. My younger sister, Sunny, who uses a wheelchair, had been in attendance since the start. It was her first action with the march’s sponsor, ADAPT (Americans Disabled for Attendant Programs Today), a group founded in 1983 that uses direct action to fight for the rights of people with disabilities. Usually they use their wheelchairs to block intersections, but some veterans told us stories of stopping traffic with nursing-home patients still stretched out on their hospital beds. Despite my able body, the activists I met on the march were all far more resilient than I, proving one of the main points of this and all ADAPT protests: that disabled people are not weak and only worthy of pity. These folks had come 144 miles, which is more than most people who can use their legs ever do.