Activists take action after 'Olmstead'
Getting Home
"The Olmstead decision is the fulcrum," says American Disabled for Attendant Programs Today's Mike Auberger. Since June's Supreme Court decision in Olmstead v. L.C. and E.W. , all sorts of groups have been working to force Medicaid to loosen its grip on dollars earmarked for nursing homes institutions and get the feds to let people get attendant services in their homes -- as a matter of policy and not just through waivers.
The Health Care Financing Administration, responsible for federal Medicaid dollars, has been "jumping through all sorts of hoops" recently, said Auberger. It changed Medicaid rules in Nov., 1997 so registered nurses would no longer be required to supervise attendants in waiver programs (See "Victory de-medicalizes attendant services," Nov/Dec. 97 D.R. Nation). An Aug. 1998 HCFA letter warned state Medicaid directors to comply with the ADA's "most integrated setting" mandate (See "Freedom is now within our reach," Sept./Oct. 1998 Ragged Edge).
"It's a major sea-change, but nobody's even paying attention to it."
The "most integrated setting" mandate was what the Olmstead decision was all about. The Supreme Court upheld the mandate. But it didn't go so far as to dismantle the "institutional bias" in Medicaid.
The court ruled that people should receive services in the "most integrated setting" but there were some big "if's": if it was "determined' by a "treating professional" that this was best; if it was "cost effective."
"Is the glass half empty or half full? "The 'treating professional' is still in there, and 'cost effective' is still in there." But we can work with this stuff like we always have," said Auberger.
Moves are on to get things defined the way disability rights activists want them. "Treating professional" should mean advocates as well, says Auberger. And activists can use Oregon "as a state that does use 50 percent of its Medicaid budget on community-based services, and point to them" as a model for other states.
ADAPT folks are going to be meeting with state Medicaid directors "to carve this stuff out, state by state," he says. "We've started that already."
"The Olmstead decision won't stand still long," says Mouth magazine's Lucy Gwin. "We have a bit of momentum now, plus a few thousand advocates who know what Olmstead can mean: freedom for all our people."
Freedom "won't just happen," says Auberger, noting the problems that have occurred with previous de-institutionalization efforts for people with mental disabilities.
"When the Emancipation Proclamation was signed, the slaves didn't all just move off the plantations," said Auberger. "There have to be mechanisms in place to get people moved into the community." And not just into group homes but "our own homes," as ADAPT puts it. The group has mapped out a plan for its members to use to jumpstart the process.
Mouth magazine (along with Ragged Edge magazine, see p. 1) is launching Freedom Clearinghouse to "supply and connect state-to-state networks" with step-by-step how-to materials to get things rolling.
Steve Taylor of Syracuse, New York, got things rolling through an opinion-page article (see story, below).
'I would want this choice'
The Olmstead decision defines our mission . . . No American should have to live in a nurisng home or in a state instituion if that individual can live in the community with the right mix of affordable supports . . . It's up to all of us to work together -- and I mean together -- to implement the ruling as quickly as possible.
HHS Secretary Donna Shalala, in a July 28 speech to the National Conference of State Legislators
Free Danny from Cell 44
A Texas quad's internet campaign is just one of many ways in which folks are starting to holler about being allowed to live at home.
"The Texas Dept. of Human Services refuses to pay for attendant care at home, even though I'm on a nursing home waiver program," says McBroom's website (http://www.geocities.com/CapitolHill/Parliament/9170/) He calls his effort "a fight to live in a most integrated setting, the home I own."
"Our federal and state governments must at least allow us to live where we want," says McBroom. "We don't live in the dark ages. We won't be locked away and forgotten. We must speak up for our rights now.
"Use the Internet to bring this issue to the attention of people who can effect a change by giving us sufficient attendant care at home."
McBroom says he's working with Texas ADAPT and the Austin, TX-based Advocacy, Inc.
Article by researcher stirs outrage, starts coalition
'There's No Place Like Home'
Last February, an opinion-page article by Steve Taylor, head of the Center on Human Policy at Syracuse University, appeared in the Syracuse Post-Standard. "System makes it hard to care for aging parent," ran the headline. (You can read the piece on-line at http://soeweb.syr.edu/thechp/OP-ED.html)
Taylor wrote about the toll the system had exacted on his family. "We paid for 12 hours a day of home care for her for four years through her own funds. The money was running out. But I ran into all kinds of roadblocks when I tried to pursue Medicaid funding for home supports," he said.
Taylor says,
After the piece appeared, the local director of the county's long-term care office, which determines hours of personal assistance and distributes Medicaid funds, wrote a petty bureaucratic letter to the editor in which she talked about the wonderful "continuum of services" we have -- the usual b.s. This pissed off a lot of people who know how the system really works.
A lot of family members of aging people contacted me after the op-ed ran. They said that what I'd written reflected their experiences too.
I'm well connected with the disability community, but I haven't had much to do with the aging networks and groups. Contrary to popular opinion, a lot of family members -- spouses, children -- don't want to put their relatives in nursing homes. They want help to keep them at home. But the system won't let them.
We pulled a bunch of people together and formed a coalition called "There's No Place Like Home" -- a bit schmaltzy, but we wanted to communicate a simple message. Eventually 30 to 35 groups (several statewide, but most local) joined. We had not only the usual disability activists but parent groups concerned with medically involved kids, and the local chapter of the AARP. We even had the local ACLU and some religious groups sign on.
In June we sponsored a public forum that drew a packed house at our county legislative chambers. Politicians and bureaucrats listened to over two hours of testimony from people with disabilities, parents of kids who require home nursing care , including a father whose 10-year-old is in a nursing home, and relatives of elderly people who have Alzheimer's.
The aging community is a sleeping giant. Few people have been exposed to ideas promoted in the disability community like self-directed personal assistance. When they hear about these ideas, this is what they want.
We want the state to expand consumer controlled services.
We have this weird thing here called "fiscal assessment." Home care can cost no more than 90 percent of what nursing home placement would cost. And here in New York, all the funds have to go through agencies -- agencies which are charging the state $16.50 an hour and paying the aides $6.50 an hour.
We want the state to abandon this fiscal assessment system. The system is screwed up, and that's not by chance. They don't believe in home care. The nurses have their own agenda; and you have all these "certified home health care agencies" who don't want the money going to the people. And you have the nursing home lobby.
We have not been real successful getting a lot of publicity -- there's been no newspaper coverage. We had contacted them and had personal contacts; but they said it was bad timing
Information about Taylor's coalition is online at http://soeweb.syr.edu/thechp/coalition.html
Outrageous!
The people who determine eligibility and set hours are county employees. They're obtrusive, they're rude, they fight with people; they threaten people who complain with cutting off their hours. People are scared. This life and death for them; if they get minimal hours it really defines the terms of their lives. If that's cut off, they're in the nursing home. It's outrageous
We're now documenting their day-to-day interactions these people have with people who need services. Their behavior has just got to stop.
MiCassa to be in Congress again
The Medicaid Community Attendant Services And Supports Act of 1999 -- MiCASSA -- will likely be introduced after Labor Day, says ADAPT's Mike Auberger.
MiCASSA amends Title XIX of the Social Security Act -- Medicaid -- to create an alternative service called Community Attendant Services and Supports. If MiCASSA becomes law, individuals now eligible for "Nursing Facility Services" or "Intermediate Care Facility Services for the Mentally Retarded (ICF-MR") under the current law will also be eligible to instead choose "Community Attendant Services and Supports rather than nursing home placement. "The money follows the individual," is how ADAPT puts it.
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