It is another sleepy Saturday evening at this Wheaton nursing home.
Then the fiery woman in the red dress rolls off the MetroAccess bus in her electric wheelchair.
She has a spiral notebook in her lap and passion in her voice. She's quadriplegic.
She's Ellen Archie, 37. She used to live here. Now she's back, helping other people get out.
"They can't stop you from having a life outside of here," Archie tells her old neighbors, who encircle her with their wheelchairs in the courtyard.
Archie is one of a devoted network of outreach workers -- some paid, some volunteer -- who go into nursing homes, whether they are welcome or not, and tell residents about their rights under federal law to live with as much freedom as they desire and can safely handle.
It has been three years since Maryland began providing waivers that allow nursing home residents ages 18 to 59 to opt for care in their own homes, provided they can acquire the home health services they need at the same price or less than it costs them to live in an institution.
For years, many disabled people have been propelled into nursing homes simply because Medicaid has paid for a bed there but not for the comparatively modest costs of home health care. But federal laws and court rulings -- and the staggering costs for states -- have laid the groundwork for providing more options for the disabled who want to live in the community.
"We don't have dementia, we don't have Alzheimer's. We have our minds," Archie tells her listeners. "It's mind over matter."
"Mind over matter, that works sometimes," muses her old friend Sherry Haynes, 54, who misses Archie. She used to straighten Archie's dresser drawers and keep her company before Archie got a Medicaid waiver and a rental assistance voucher and moved into her own apartment in Silver Spring.
Haynes, who has diabetes and lupus and has difficulty walking, wants to move out, too. It has been a year since Archie left, and Haynes is still waiting for housing.
"Ellen, I need another form, the green form for the waiver," Haynes says. "I need to fill it out if you don't mind, sweetie."
"I'll get it out to you Monday," Archie promises.
Her campaign, and that of other outreach workers, is not aimed at nursing homes that abuse residents or at patients who cannot function without the intensive services there.
"Our goal is to get people who do not belong in nursing homes out," says Archie, who keeps files on the people she visits regularly stacked on a tray table at the foot of her electric bed in her small apartment.
Sitting in the courtyard with her old neighbors, she acknowledges the struggles of daily life in a paralyzed body, with its spasms, sweats and tics. But mostly she speaks of the small joys of living again in the world: a trip to the coffee shop, a visit to the park or, in the evening, a sip of merlot.
She knows the thought of freedom can be scary to some.
"A lot of people just give up," she says. She understands. They are not old, yet they have suffered terrible trauma. Their monthly Supplemental Security Income checks are turned over to the nursing home. And they have come to depend on the institutions for all their needs.
"Your life will change, " she tells them again and again. "But you have to want it to change."
Some have taken the leap of faith.
"We've gotten 145 out," Archie reported proudly this month. The cases of those 145 people took more than two years of hard work by the state's six nonprofit centers for independent living. A nationwide network of such centers has been charged with protecting the rights granted by the 1990 Americans With Disabilities Act and the U.S. Supreme Court's 1999 Olmstead v. L.C. decision, which directs states to offer programs for the disabled "in the most integrated setting appropriate."
There is much work to be done.
In Maryland, roughly 1,725 people ages 18 to 59 live on Medicaid in nursing homes, the state says. In the District, 1,106 people younger than 60 live in nursing homes on Medicaid, advocates say. Virginia estimates that 3,760 Medicaid recipients younger than 64 live in nursing homes.
"Most of the people could live in the community with supports through a Medicaid waiver," said Cathy Raggio of Independence Now, which serves Montgomery and Prince George's counties.
Nelson J. Sabatini, Maryland's health secretary, agreed that many people would do better outside of nursing homes. "What we are doing today in some cases is fairly barbarian," he said. "We're keeping people in an institutional setting who don't belong there."
He is concerned not only about the way institutionalization can limit potential, but also about the cost. A year in a nursing home can cost more than $60,000; the same services delivered at home cost closer to $40,000.
"The waivers have proven we can meet a lot of people's needs in settings other than nursing homes," he said.
In this regard, Maryland is known as a progressive state. The General Assembly has approved legislation known as the Money Follows the Individual Accountability Act, which has increased access to waivers to move disabled residents back into the community.
Sabatini said more needs to be done, both to help move people out of nursing homes and to contain the rising costs of long-term care under Medicaid. He wants to turn over the state Medicaid program to an HMO-like system that he said would make long-term care more consumer-friendly and cost-efficient.
Under the plan, he said, no nursing home residents would be discharged against their will. But organizations would receive financial incentives to develop alternatives.
Some advocates for the disabled said they worry that the plan would simply turn nursing homes into assisted living facilities, another form of institution.
Sabatini disagreed. "I think this model provides flexibility," he said.
Like the advocates, he said the biggest challenge to getting people out of nursing homes is finding accessible, affordable places to live.
"We can say you can go out and get services in the community, and the money follows you. But the housing is not included," he said.
Too Few Choices
At a recent hearing of the Governor's Commission on Housing Policy in Ellicott City, advocates for the disabled, some in wheelchairs, lined up to testify to that fact.
"There isn't a day that goes by that we don't receive a call on housing," said Cheryl Randall of Baltimore-based Making Choices for Independent Living. She spoke of a client who died the day her name finally came to the top of an affordable housing waiting list.
Tom Liberatore of the Maryland chapter of the National Multiple Sclerosis Society expressed the problem in dollar terms.
"In 2002, the average monthly rent for a one-bedroom apartment in Maryland was equivalent to 134.5 percent of the monthly SSI benefit received by Maryland citizens with disabilities," he testified.
The standard Supplemental Security Income benefit amounts to about $560 a month in Maryland, so to afford housing, beneficiaries rely heavily upon rental assistance vouchers. But the federal voucher program is undergoing cuts and is overwhelmed by applications. In the Washington region, the wait for a voucher can stretch for months and often years.
Even for people who can afford to pay, the number of apartments that are wheelchair accessible is small.
With the help of the Freedom Center in Frederick, Joseph Boyer Jr., 69, a former construction worker and double amputee, beat the odds.
After more than three years in a nursing home, he recently moved into a modest, accessible apartment with the help of a Medicaid waiver for older adults. His daughter and grandson were on hand to celebrate with him.
So was his peer mentor, Mary Kemp, who like Boyer lives with diabetes. She worked for a year to help him get the waiver and to find him the apartment equipped with an electric hospital bed and bathroom with grab bars. Boyer will receive twice-daily visits from a home health aide, who will help him with bathing and other tasks.
After savoring his new home, Boyer patrolled the parking lot on his electric scooter and checked his new mailbox. Then he sat for a while by his front door, enjoying the speckled shade of a young oak. These small pleasures were missing for him, he said, in those years in the nursing home.
Kemp gave him a hug.
"It's been a day, Mary," he said to her. "It's been a wonderful day."
'Like Hitting the Lotto'
Ellen Archie knows the feeling. She was 29 when she awakened from a swimming pool accident in a helpless body. She learned that the injury to her spine had paralyzed her legs and severely curtailed use of her arms. After months of work, she regained the use of a few fingers. She left the rehabilitation center for a nursing home. Days, months and years passed in a limbo of regimented toiletings and feedings. The nights were punctuated by the wails of some of her elderly and demented neighbors.
"Is this going to be my life?" she wondered at 34.
Then, by chance, she found help from Independence Now.
She waited nearly three years for her housing voucher. And when she received it, she knew she had only three months to use it or lose it.
After countless telephone calls, she found Alexander House, a wheelchair-accessible building owned by Montgomery County's Housing Opportunities Commission.
"Getting a voucher and getting out of the nursing home is like hitting the lotto for $280 million," she says. The challenges, she says, are unimaginable to most people. So are the rewards. "It is magic. And it's good magic."