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Compilation of Articles about the Free Our People March.
Disabled plan march to Washington, D.C.
By JENELLE JOHNSON
Family Living Editor The Iola Register - Iola, Kansas
Saturday, August 23, 2003
People with disabilities will join together Sept. 4 through 17 for the "Free Our People March" from Philadelphia to Washington, D.C., as they rally to draw attention to the need to pass the Medicaid Community-based Attendant Services and Supports Act (MiCASSA) into 2003 legislation.
The march is being spearheaded by ADAPT, a leading organization for the civil rights of Americans with disabilities.
Iolan Tony Meadows and Wayne Wilson, independent living counselor at Iola's Resource Center For Independent Living, Inc. (RCIL), Garry Warren and Kerry Moberg of Fort Scott and several residents from Parsons and Pittsburg will be among the group making the 144-mile march.
Wilson, a former law enforcement officer, became familiar with services offered to people with disabilities through his late wife, who had been disabled for 35 years.
"My involvement with the RCIL took on new meaning for me when I lost a leg during a surveillance assignment while working in law enforcement in western Kansas," he said. "I plan to ride in my power chair."
The march for MiCASSA, Wilson said, is an attempt to get legislation passed to allow the disabled and the elderly to live at home, or a place of their choice, with Medicaid funding. Currently, Medicaid is used only at a nursing home.
"It has been proven that people are happier, healthier and live longer if they can remain in their homes with a person or family member caring for them, at a lot less expense than living in a nursing home," he said. "With a lesser cost of living in their own homes, money could be used to hire people to help the elderly and disabled in their homes with housework, laundry, meal preparation and personal care."
Budget woes in nearly all 50 states have forced legislatures to slash budgets, especially Medicaid programs, he said.
Under Medicaid, states are not allowed to cut federally mandated services, like nursing homes. Instead, first on the budget chopping blocks are so-called "optional" services like home and community based attendant services and supports.
"The march is to make our senators and representatives aware that the "optional" services are the ones that will help older and disabled Americans stay in their homes rather than be forced into nursing homes and other institutions, which are a greater expense to the government," Wilson said.
RCIL, INC. WORKS with individuals, families and communities to promote independent living and individual choice to persons with disabilities.
The RCIL, Inc., 602 S. State St., is a non-profit organization. It receives funding through a grant from the Kansas Department of Social and Rehabilitation Services. Additional funding is secured from private and public contributions.
For additional information about the September march or the RCIL call Wilson at (620) 365-8144.
Disabled rights rally set for D.C.
By SEAN O'SULLIVAN
Staff reporter The News Journal - Delaware.
08/16/2003
Two people from Delaware are among 150 expected to ride their wheelchairs from Philadelphia to Washington next month to call attention to the needs of the disabled.
Cheryl Hampson and Daniese McMullin-Powell will participate in the "Free Our People" march and rally calling for changes in federal law that would allow more Medicaid money to be used for in-home and community-based care. Long-term care money from Medicaid now is used largely for nursing homes and similar facilities.
The point is to give disabled people a choice, Hampson and McMullin-Powell said.
Hampson, who uses a wheelchair, said she worries that if she becomes ill after her children move out, she may be forced into a nursing home because of her disability. "I'm very, very concerned," she said.
A bill in Congress now would give states more flexibility with Medicaid money and allow it to be used for non-medical home care, such as a worker who would help a disabled person with dressing or cooking.
"It would enable states to get extra money to keep people in the community instead of putting them in nursing homes and get people out of nursing homes," said McMullin-Powell, Delaware organizer of ADAPT, a civil rights group for the disabled. "We want to get people out of institutions where they do not want to be, so they can live in the community like everyone else."
McMullin-Powell said ADAPT estimates that half of the 5,000 people in Delaware nursing facilities could move back into their homes if the bill passes.
Sen. Joe Biden, D-Del., is one of the Senate sponsors of the bill. His spokeswoman, Margaret Aitken, said the bill faces an uphill fight because of money. While there may be some cost savings, according to supporters, because in-home care can cost less than a nursing home, the measure has a price tag of $20 billion over the next 10 years.
McMullin-Powell said other cost estimates of the measure have put the price tag at $4.5 billion to $5 billion.
But whatever the cost, with the federal deficit hitting record levels, Aitken said there is not much support for increasing the cost of Medicaid. A similar measure failed to pass last year, she said.
The "Free Our People" event will start at the Liberty Bell in Philadelphia on Sept. 4, and over the following 14 days, travel the 144 miles to Washington, D.C., for a rally at the Capitol on Sept. 17. The group plans to stop at Rodney Square in Wilmington at noon on Sept. 6.
More people will join the march as it heads to Washington, and 20,000 are expected to be at the rally in front of the Capitol.
Organizers hope the rally will be the largest ever in support of disabled rights.
For more information on the march, visit the Free Our People Web site, or call McMullin-Powell at 981-9478.
March set to support health care legislation.
By KURT BRESSWEIN
The Express-Times EASTON
Wednesday, July 30, 2003
Though she battles chronic illness, Peggy Dougherty considers herself lucky to have gotten out of a nursing home in the early 1990s.
In September, she plans to join 200 people with disabilities traveling from Philadelphia to Washington, D.C., to help others live more independently, too.
The group is rallying for the passage of federal legislation that would make states pay for community- and home-based medical care as an alternative to long-term care facilities. "People like me do not want to live in nursing homes," said Dougherty, 63, of Easton. "We want to have the freedom of choice to live out here in affordable, accessible housing -- you know, an apartment that we can live in. And that is what this march is all about."
Disability In Action, a nonprofit group with offices in Philadelphia, is organizing the march for ADAPT, a coalition of supporters for the rights of people with disabilities. It started in 1983 campaigning for wheelchair lifts on public transportation vehicles. ADAPT stands for American Disabled for Attendant Programs Today, and the group is pushing for equality in federal and state support for attendants and resident-care facilities.
"A lot of people are put in nursing homes because basically they require very simple things that they could receive in their homes for a lot less money to the state and the U.S. federal government," said Jimmi Shrode, an organizer for Disabled In Action. Legislation that the Sept. 4-17 march supports is known as MiCASSA, or the Medicaid Community-Based Attendant Services and Supports Act of 2003.
U.S. Sen. Tom Harkin, D-Iowa, introduced the measure in May with 11 co-sponsors. Sen. Arlen Specter, R-Pa., and Sens. Jon Corzine and Frank R. Lautenberg, both D-N.J., are co-sponsors. Rep. Danny K. Davis, D-Ill., introduced identical legislation in the House of Representatives with 73 co-sponsors -- 60 Democrats, 12 Republicans and one Independent.
The bill would amend the Social Security Act to require that state Medicaid plans cover community- and home-based attendant services for some Medicaid-eligible people. It would also address disparity in state support for at-home services, which is now optional. Shrode said Pennsylvania runs an attendant services program that receives $35 million to $40 million a year in federal money compared to the $3 billion a year the state receives to subsidize long-term care facilities.
Dougherty said she has counseled about 15 people about leaving nursing homes since she joined Disabled In Action in 1995. She said she got involved in 1989 after waking up in a nursing home in Fort Worth, Texas, from a 20-day coma. She had gone there to finish her education as a registered nurse. Shortly after graduation, she had the stroke-induced coma.
Dougherty said she was left in a bathtub at the home for 2 hours, and that she witnessed staff abusing residents. "I couldn't wait until I got out," she said.
She returned to Easton, where she was born. One of her sons, Brian K. Marsteller, is missing. She said she has not heard from him for decades and does not know what happened to him. In April 2001, another son, Richard J. Geddes, died. She said she has little contact with the rest of her family.
Dougherty also sufferers from multiple sclerosis and fibromyalgia and has had three heart attacks. She does not need help getting around the Easton Housing Authority senior apartment she rents on South Fourth Street. But outside she uses a wheelchair, and she has regular help from her attendant, Michele Abel. Abel plans to join Dougherty on the 144-mile march, as does 60-year-old Ronald Greenleaf from the 600 block of Northampton Street.
Shrode said he expects about 225 people to join the route between the Liberty Bell and the Upper Senate Park in Washington.
Disabled In Action is soliciting donations of money for camping equipment the marchers will use, for vans to be used on the trip, for participants' hotel rooms in Philadelphia and Washington, and for food and refreshments.
Regulators of long-term-care facilities in Pennsylvania and New Jersey say they support patients' choice of help for disabilities or aging. But they defend nursing homes and facilities from criticism that residents get sub-par care. "People thrive in facilities where they have not done as well on their own without professional oversight, routine monitoring of psychological and medical health (and) a lot of other things," said Paul Langevin, president of the Health Care Association of New Jersey. The association is a 50-year-old nonprofit agency representing 350 long-term and acute-care facilities. In New Jersey, all aides working in facilities must undergo background checks and fingerprint-history checks every two years. Failing the checks means they lose their certification awarded after 90 hours of training.
"Overall nursing homes provide good quality care, and the nursing home industry is extremely regulated where the home- and community-based services are not regulated at all," said Holly Lubart, spokeswoman for the Pennsylvania Health Care Association. Lubart said her association still supports patient choice for the care they need -- the goal of the MiCASSA law. "We're not saying that nursing homes are the only answer," she said, "but what we're saying is there certainly is a need for nursing homes."
Disabled Coloradoans Plan For ADAPT March.
NEWS4
Aug 29, 2003
Lawmakers are debating a bill giving people with disabilities help in their efforts to live on their own.
In many states, people with disabilities are forced to live in nursing homes which limit their freedom, and the bill would curb such a requirement on a national level.
On Friday, Denver's disabled community came together for a picnic in support of this new legislation. ADAPT in Denver is sending off 40 of its members for a march on Washington. The group will join people with disabilities from all over the country in support of the new federal legislation -- called MiCASSA.
The legislation would free people with disabilties from living in nursing homes. It would also allow the federal money they recieve to be used on home care services.
"It's time for our country to look within and make things better for our citizens," ADAPT Organizer Anita Cameron told NEWS4. "There are 54 million Americans out there with disabilities, and millions of us -- upwards of 2 million people with disabilities -- are locked away in institutions."
Cameron was one of those people put in an institution.
"They thought that because of my disabilities it wasn't safe for me to live alone," she said.
Cameron fought to get out of the institution she was in, and she now lives alone with no home care services. She now has a sense of freedom that she says every person is entitled to, so next week, she'll join the march from Philadelphia to Washington to fight for that freedom for others.
"We are marching to send a message to America, to our lawmakers, that this is very very important legislation," Cameron said.
ADAPT members say that it's more cost efficient to provide in home services to a person with disabilities than to institutionalize them.
Disabled fight for rights Group from Colorado to join march in Washington, D.C.
Story by Matt Schuman
The Greeley Tribune
August 30, 2003
DENVER — Anita Cameron has seen the devastation of people with disabilities living in institutions.
She wants to make sure no one has to live in one if they choose not to.
Cameron, a 38-year-old Denver resident who uses a wheelchair because of multiple disabilities, will be one of 40 disabled individuals from Colorado who are going on a 144-mile march Sept. 4-17 from the steps of the Liberty Bell in Philadelphia to the steps of the Capitol in Washington, D.C., to bring a message to Congress to pass a bill known as MiCassa.
The health-care bill would guarantee people with disabilities the right to choose to receive health-care service in their homes instead of an institution. It also would allow the money paid to institutions through Medicare and Medicaid to follow the disabled person into the community where they could choose a health-care provider.
The march to Washington, D.C., is expected to be the largest gathering of disability-rights supporters in history.
Cameron knows better than most the horror of living in an institutional setting. Twenty years ago, the civil rights advocate was committed to a mental institution for a year because she was diagnosed with epilepsy and the courts felt she was a danger to herself.
And four years ago, her adopted father, Ricky Bozeman, had a massive heart attack that left him with brain damage, unable to walk and needing long-term health care.
His wife, Alice, who suffers from chronic asthma, took care of him in their mountain home near Empire in Clear Creek County until she had to have surgery for breast cancer and was physically unable to take care of herself without assistance.
Her HMO would not pay for home health-care and insisted that Bozeman be put in a Denver nursing home for at least 30 days. While there, he suffered horrendous treatment at a home his wife thought was “the best nursing home in the group.”
The morning after she admitted him, she walked in his room and found Bozeman “lying in feces from his shoulders to knee.” Bozeman kept saying their were “lizards” all over him. Alice discovered that it was mice crawling on him. His wife also found mouse droppings in his dresser drawers.
If that wasn’t bad enough, the nursing home discontinued his medications for spasms, causing his leg to atrophy so badly that his leg is now perpendicular to his hip and will require surgery to fix it. His wedding band was also stolen while he was at the nursing home.
“This was the first time Anita and I had the reality of what it was really like in a nursing home,” Alice said. “When you saw what the nursing home was doing to other people and to him it just floored you. You can’t even imagine.”
She knew the only way Bozeman was going to live through the experience is if he got sick enough to enter the hospital. That’s exactly what happened. Thirteen days into his stay his bladder became blocked and despite objections from her doctor and the nursing home, she called 911.
“That’s when my mom had what I call a diva fit — a large diva fit — and took him out to the hospital,” Cameron said.
He required emergency surgery to save his life. It would be the last day he spent in the nursing home. Today, Bozeman, 49, is able to live with Alice, 57, at their home in Denver. He receives five home health care visits a day through the Atlantis Community of Denver, which held a rally Friday for Cameron and the others from the disability advocacy group ADAPT that is heading to the march from Philadelphia to Washington, D.C.
While it cost the government $125 a day to house Bozeman in a nursing home, it now costs $73 a day at his home.
More importantly, Cameron said that Bozeman is where he wants to be.
It’s a choice she believes all people with disabilities should have. It’s why she believes in
MiCASSA.
It’s why she also disagrees with those who argue against it because of financial concerns.
Cameron said the chief of staff for Sen. Joe Biden said MiCASSA would be an “uphill battle” because it would cost the federal government $20 billion in 10 years.
Cameron argues that MiCASSA is more beneficial and cost-effective than spending $1 billion a week on the war in Iraq.
“Everybody is concerned about homeland security,” Cameron said. “Well, what about homeland security for people with disabilities?”
It’s security her adopted father never received.
It’s security she hopes people with disabilities will have for a lifetime if
MiCASSA is passed.
Disabled activists are on a roll Adapt volunteers are heading to East Coast
By Ryan Morgan, Daily Camera Staff Writer
September 2, 2003
Mike McCarty, a local activist on behalf of the disabled, is ready to march.
Or, rather, to roll.
"My wheelchair's only about 6 months old, and I have brand-new tires on it," he said.
He's going to need them later this week, when he joins six other members of the local chapter of the disabled-rights group Adapt on a trip to Philadelphia.
Once there, McCarty and 150 other Adapt members from across the country will take two weeks to march the 144 miles to Washington, D.C.
Marchers are hoping to draw support for a proposed Medicaid Community-based Attendant Services and Supports Act, which would let people with disabilities receive care at home.
Under current law, disabled people must live in nursing homes to receive Medicaid-funded care, a policy activists call unfair and inhumane.
"Would you want to live in a nursing home?" Adapt spokeswoman Judy Neal asks.
"If you were to get hit by a truck today and end up in a wheelchair, you would want to be able to work and enjoy your community," she said. "Nursing homes can be just warehouses sometimes to keep people with disabilities out of the way, docile and quiet."
Neal and others marched on the Pearl Street Mall in Boulder last month to draw attention to the nursing home issue and to rally support for the Philadelphia-Washington march.
Last month's march was the first time Adapt has made itself visible in Boulder in the last several years. The last time the group was in the spotlight was in 1998, when members picketed Tom's Tavern, the restaurant owned by City Councilman Tom Eldridge.
They persuaded Eldridge to installed a wheelchair access ramp at the Pearl Street restaurant. He also served a stint on Adapt's board of directors.
Neal said her group's activities over the last month, and its march on Washington, signal that they're starting to remember the importance of being visible.
"We need to be out there," she said. "I think the march will do that for us."
Eldridge agreed.
"Years and years ago, we used to just bury these people in some kind of home, out of sight and out of mind," he said. "Today, they're out in the world, and people are aware. The public can relate much more."
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