( '? note: as a person with a disability I find that most folks don't realize the power of disability activism or recognize the movement as the "last civil rights movement". We cannot go forward in ignorance, but choose to educate so that all "temporarily able bodied" people will someday join the struggle for the rights of all. I will post at least one article per day about this enormously misunderstood issue. thanks. PS ADAPT donated the chair I sit in today, and I have worked with their struggle for over 20 years. end ( '? note
by Mary Johnson
EDITOR'S NOTE: There are many many hotlinks in this story. This story itself reports ADAPT's most recent action, but for those readers who are not familiar with the issue, the links will provide a wealth of information and understanding about this issue so central to disability rights movement activism.
 ADAPT on the roll in DC PHOTO CREDIT: William Charles Tinker, NH ADAPT |
ADAPT activists are returning today to their home states from the nation's capital after a 5-day "action" at the National Governors Association winter meeting in Washington. That's what ADAPT calls these twice-yearly excursions, following the governors' group to their meetings and chanting and marching and trying to hold meetings with officials. The group has been doing "actions" since the mid 1980s, when their issue was getting the nation's public transit providers to put lifts on city buses.
In the early 1990s, ADAPT changed its name from "American Disabled for Accessible Public Transit" to "American Disabled for Attendant Programs Today" and took up the fight to get public money away from the nation's nursing home industry, so that it would "follow the person." They want Medicare and Medicaid, the funders of the nation's long-term care system, to change. With Medicaid specifically, they want the feds to require that people be given a choice in where they receive personal care -- today in most states, there's no choice: if you need personal care, you're put in a nursing home.
Disability rights activists insist that most people, if given a choice, would prefer to stay in their own homes and have someone come in to help them bathe, dress and so on, rather than being forced into a nursing home. Part of ADAPT's goal is to have people be able to control their own services -- something that's been jargonized to "consumer control."
Now ADAPT just calls itself "ADAPT" but their battle is still to get money shifted to in-home services.
Last year they undertook a 144-mile march spanning nearly two weeks, from Phildelphia's city hall to the steps of the Capitol, in their "Free Our People" March -- an amazing reenactment of some of the long marches of the civil rights movement, which suffered from getting almost no national publicity whatsoever.
ADAPT's centerpiece is a bill called MiCASSA -- the Medicaid Community Services and Supports Act. It's been introduced into the last several sessions of Congress, never getting any further than committees. It would require the Medicaid program to change to give people a "real choice" -- and it calls for "consumer control." (More on MiCassa.)
For the past few years ADAPT activists have been dogging the nation's governors, trying not only to get the governors to change Medicaid policy within their own states -- which the governors are entirely free to do, without any changes in current federal law -- but also to get the group to commit to pressure the Administration on putting its weight behind passing MiCassa legislation.
The bill goes nowhere now because the nation's nursing home industry is against it: if people have a real choice in where to receive care, most won't choose to go to nursing homes -- and nursing home operators know it. Thus, the nursing home industry will lose money bigtime, until they manage to buy up all the in-home "home health care" agencies (which they're working fast to do, but that's another story).
Economics may finally tip the scales at what ADAPT pressure has managed to start to re-balance: Study after study shows (and it's not rocket science to figure it out yourself) that services in the home are far cheaper than in a nursing home. And states, strapped for money, are finally starting to stand up to the nursing home lobby which has kept funds tied up in state Medicaid policies that place Medicaid-eligible people in nursing homes as their only option.
A March 1 editorial in the Fort Wayne, IN News-Sentinel notes that the "effort to reduce the growth of federal spending on Medicaid might be a boost to advocates for in-home care." Indiana is one of many states being pressured by activists to implement the Olmstead decision.
The 1999 Supreme Court decision known as Olmstead says states must let people get personal care services paid for with public funds "in the least restrictive environment." Disability activists consider the Olmstead ruling as significant as Brown v. Board of Education.
But most people not in the disability rights movement have never heard of Olmstead. And many states have ignored it. And disability activists have sued them. The suits are starting to turn things around. One did in Louisiana, and the same thing is happening in other states. But it's gotten very little national media attention (an exception was Harriet McBryde Johnson's New York Times Magazine story on the "disability gulag" -- but then, Johnson is part of the disability movement herself.)
Earlier this week the governors did finally pass what ADAPT calls a "Community First" resolution.
It was not what ADAPT had tried to get them to pass, but the language in the final document contained some of what ADAPT has been demanding. "It omitted language on Olmstead," ADAPT's Marsha Katz said.
"It did address ADAPT's push to see the majority of Medicaid long term care funding redirected to support community alternatives over institutional ones, the opposite of what happens now," she added. In the resolution's "Rebalancing the Long Term Care System" section, the governors agreed that "consumer-directed home and community-based care is preferable" and should be guided by the "preferences of the individual receiving long term care support."
"What the document didn't include," says Katz, "was ADAPT's language that the governors' association "work with the individual states to assure that the Supreme Court's Olmstead decision is aggressively implemented and that the measure of this implementation be, in a year, how many people have gotten out of nursing homes and other institutions and how many people have been diverted from nursing homes and other institutions." In other words, ADAPT wanted accountability built into the resolution -- but didn't get it.
"In the final document the NGA refused to include listing MiCASSA, or the Money Follows the Person legislation," said Memphis ADAPT organizer Randy Alexander. "And they frankly rejected any so-called federal mandates like the Olmstead decision."
The governors' document did request that Congress and the Administration change the institutional bias currently in Medicaid so that states can "offer elderly and disabled beneficiaries a more balanced choice between nursing home and community-based services." With removal of the institutional bias, NGA says states will be able to concentrate on "focused efforts to build the capacity of community supports" so they will be readily available to people who desire them, Katz continued.
"We got as much as we could from the NGA as a group," said Madison, WI ADAPT's Steve Verriden, "Now we need to take it back to our individual states, and hold our individual governors accountable to the principles they approved in this document -- and to the law of the land, as affirmed by the U.S. Supreme Court Olmstead decision.
"The bottom line is to get and keep people with disabilities of all ages out of nursing homes and other institutions."
Posted March 3, 2005.
Mary Johnson edits Ragged Edge.© Copyright 2005 The Ragged Edge
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