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Housing First

news analysis
'Liberty' for the Disabled
Kansas Activists Battle State over Nursing Home Care

Listen Listen to Joe Shapiro's report.

WyLma Mortell
WyLma Mortell helps out at a Lawrence, Kansas soup kitchen.
Photo: Joe Shapiro, NPR News


Mike Oxford
Mike Oxford
Photo courtesy Tom Olin


"We don't do medical stuff. We're not trying to cure anybody. We're not trying to alleviate a symptom. Our prime thing that we look at is advocating for liberty interests. And nobody else is doing that."

Mike Oxford, on the purpose of his group, Topeka Independent Living Resource Center (TILRC)




Dawn Brown
Dawn Brown
Photo: Joe Shapiro, NPR News


Mike Oxford and Kirk Lowry
Mike Oxford and attorney Kirk Lowry at the TILRC offices.
Photo: Joe Shapiro, NPR News


"I think (TILRC has) continued to demonstrate to us and show us illustrations of what folks can do in the community and what they can do independently. That they don't need to be taken care of; they don't need to be in a medical model."

Janet Schalansky, secretary of the Kansas Department of Social and Rehabilitation Services, who 10 years ago was one of the state officials attempting to keep WyLma Mortell in a nursing home.


Aug. 6, 2002 -- Millions of Americans with physical disabilities need help with basic tasks of everyday life. They rely on family, or hire aides. Some end up in nursing facilities.

When it comes to housing people with physical needs, change and innovation often come from those who use services themselves. NPR's Joe Shapiro recently met with a group of disability activists in Kansas who move people out of those nursing facilities, and into their own homes.


Ten years ago, activist Mike Oxford helped a 35-year-old woman with muscular dystrophy, WyLma Mortell, to leave her nursing home. She told Oxford she desperately wanted to be reunited with her two teenage sons. But Kansas state officials argued the woman had to stay in the nursing home, for her own health and safety.

"So we literally just set it up with her that at a certain day, at a certain time, we were going to go over there," Oxford told Shapiro. "And we literally went in and just wheeled her out of there. They were chasing us. (The nursing home) called the police."

Oxford is now the director of the Topeka Independent Living Resource Center (TILRC), and fights for a radical idea: He wants to allow the disabled to use state nursing home funds to pay for in-home personal attendants.

"Oxford sees things differently," Shapiro says. "Most people look at a man or woman living in a nursing home and see a person who has lost health. Mike Oxford sees someone who has lost freedom."

Oxford has a special understanding of why liberty is precious to people with disabilities. He has a rare degenerative disc condition, and now needs an electric scooter to get around. Despite his physical limitations, Oxford is gradually winning allies in his political fight.

"There's really nothing that goes on in a nursing home that can't also be provided in your own home and community -- nothing," he says.

TILRC's latest "liberation" case is a woman named Dawn Brown, 56, who says she is desperately trying to leave her nursing home and find her own place. Brown was placed in a nursing home 14 months ago. Before that, she was homeless and living in a dumpster. Workers for a state agency found her and arranged for an operation she needed.

But Kansas state social workers say Brown isn't competent to live on her own. Her psychiatrist's report states: "Without a controlled, structured, supportive environment, she is at risk of... deterioration, physically and mentally."

But TILRC attorney Kirk Lowry says that before Brown became homeless, she held a job and paid her bills. "Nothing has changed, except she was hit by a car and unable to work at Taco Bell.

"Everybody wants her to be safe," Lowry says. "But a person's liberty is most important, and we have to start with the assumption that she is free and can live on her own, until proven otherwise."

The TILRC is forced to change its strategy when the state of Kansas asks a judge to declare Brown incompetent, and appoint a guardian to make decisions about her well-being. State doctors claim Brown needs 24-hour care because her I.Q. is barely above the cut-off for mental retardation.

But for Oxford, it's not the first time competency became the issue -- 10 years ago, the state claimed WyLma Mortell was unable to care for herself. But now she works at a soup kitchen in Lawrence, Kansas, helping to care for hundreds of homeless people.

Mortell's muscular dystrophy has worsened, but she now has her own home. Four aides, hired by the state, come to her house 10 hours a day to assist her with things like bathing and cooking. Her eldest son George Mortell says his mother "is literally my motivation for everything. I overcome many odds myself and it's a mere shadowing of what she's already accomplished. And I'm very proud of her."

As for Brown's pending competency hearing, Oxford says he is convinced that once outside the "protective cocoon" of the nursing home, Brown will re-learn the skills she needs to fend for herself. "And she wants that, too -- and needs to have a chance," he tells Shapiro. "With those things in place, a lot of people end up with interesting and rewarding lives."

At her hearing next week, Brown has one extra thing in her favor: A change in state guardianship rules that just went into effect -- a change TILRC lobbied hard to pass -- says a judge must consider a person's ability to live on their own, with the kind of help provided by groups like the TILRC.

"We all succeed, we all fail. Sometimes we drop back and move forward, move laterally. It happens to everybody," he says.

UPDATE:

Dawn Brown will get a new home this week, after a Kansas judge ruled she could leave a Topeka nursing home. "I’m sure glad we won that," Brown told NPR. "Now I can go out and get a house."

A hearing on Brown's competency, scheduled for Aug. 13, was postponed -- but Kansas District Court Judge Frank Yeoman Jr. said that Brown is free to live where she chooses. Brown’s attorney, Kirk Lowry, said she would move into her own apartment on August 16.

Brown will live in a subsidized public housing apartment -- and thanks to the Topeka Independent Living Resource Center, she will get several hours of in-home personal attendants who will provide much of the same care Brown received in the nursing home.

Yeoman rescheduled Brown’s competency hearing for Sept. 24. He could still choose to appoint a guardian for Brown, and that guardian could, as state officials have argued, decide that Brown needs to return to a nursing home. But Lowry said that once Brown moves out of the nursing home, it will become less likely that she would be told to return. By getting her own home, says Lowry, "it’s proving our case that Dawn can live independently in her own place, with assistance."

Other Resources

Topeka Independent Living Resource Center

National Council on Independent Living

Kansas Department of Social and Rehabilitation Services



multimedia

Mike Oxford leads NCIL march on Washington, DC
Mike Oxford, also acting president of the National Council on Independent Living, leads a June 13, 2002 march on Capitol Hill in Washington, D.C.
Photo courtesy Tom Olin


audio NCIL rally speech on June 13, 2002 by Rep. Jim Langevin (D-RI), confined to a wheelchair after a 1980 gun accident left him partially paralyzed.

audio Hear a profile of WyLma Mortell and how she overcame disability and homelessness.

audio Capitol Hill NCIL rally: "Our homes, not nursing homes."

audio Capitol Hill NCIL rally: "Up with attended care, down with nursing homes."

Becca Vaughn at TILRC's warehouse
TILRC's Becca Vaughn shows off some of the "treasures' in the group's warehouse. TILRC accepts donations, and the staff scours thrift stores and yard sales for items than can help the disabled establish their independence. Vaughn says even a worn-out frying pan is valuable to someone just leaving an institution and moving into their own home -- "because now they can fry their own egg."
Photo: Susan Stone, NPR News


audio Take an audio tour of TILRC's warehouse with Becca Vaughn.

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