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Hjem / Albumer / Washington DC, Spring 2007 16
Dato for opprettelse / 2013 / July
- ADAPT (1714)
- ADAPT (1723)
[Headline] Community Choice Act NOW By Tim Wheat [Subheading] Saturday-ADAPT Arrives in Washington, DC On the heels of the success of Money Follow the person, ADAPT activists gathered in the capitol to follow-up with The Community Choice Act (S 799 and HR 1621). This legislation will address the institutional bias that favors expensive facilities over home and community services, a situation that forces Americans into undesirable nursing homes and state facilities. ADAPT is leading the push for long-term [image] [image caption] Photo by Tim Wheat [text resumes] Medicaid reform needed to end the insti-tutional bias. The logical next step to the Money Follows the Person legislation that passed last term is the Community Choice Act. MFP allows states to redirect long-term care funding from institutions to alter-natives in the community. This will allow many Americans to choose to live at home rather than an expensive institution. Do you want to live in a nursing home? [Subheading] Sunday The ADAPT Community's Fun Run It was a perfect day in the Upper Senate Park for the ADAPT Fun Run for Disability Rights. The event is unique in ADAPT history: a fundraiser on the first day of the Action to raise money for local grassroots actions and to support National ADAPT's efforts in system change. The walkway around the grassy area of Upper Senate Park served as the quarter-mile track. Large deep green trees lined the path, providing welcome shade to the runners. The fun and the fundraising were differ-ent, but getting the Community Choice Act (S 799 and HR 1621) passed is ADAPT's objective. All of the money is used to sub-sidize expenses to get ADAPT activists to the action. Many ADAPT members have spent years in institutions, isolated from the community and job opportunities. The subsidy is essential to get the real grass-roots message of people with disabilities to lawmakers who may have had no interaction with the disability community. The morning was used for training and organizing, but at noon, ADAPT split into groups and made their way to Upper Sen-ate Park for the event. The detail on the massive marble buildings stood out in the sunlight as the shadows cut distinct lines in the elaborate structures. From Upper Senate Park, the Capitol dome is a powerful reminder that the Fun Run for Disability Rights has the ultimate purpose to change the direction of the national Medicaid policy. Mark Johnson of Georgia, this year's winner of the Henry Betts Award, pledged $5,000.00 of his award money to match runners pledges. DJ Johnny Crescendo and "master of ceremony" Bob Kafka kept the energy level up and motivated Bunny McLaude to do one 100 laps. "The Fun Run for Disability Rights is a way that disability rights activists can raise bucks for both national and their local chapters," said Kafka. Jim Ward, head of the ADA Watch and Andy Imparato, director of the American Association of People with Disabilities, came to support ADAPT. "I think it is an amazing day and a great turnout," said Imparato, "So what's not to love?" Fun Run sponsors included: The Democratic National Committee Centene Corporation; Liberty Resources, Inc.; tri-County Patriots for Independent Living; AmeriGroup Foundation; Mark Johnson; Topeka Independent Living Resource Center; Powers Pyles Sutter & Verville , P.C.; Acumen Accent; Cornell Pharmacy; Holiday Inn Capitol; Janine Bertram Kemp and Tom Olin; Personal Assistance Services of Colorado; Alpha One; The Ability Center of Greater Toledo; American Association of People with Dis-abilities; Castro Enterprises-McDonald's in El Paso; Sovereign Bank; and Yoshiko Dart . [Subheading] Monday -- Boisterous, Loud and Proud. Ninety-nine ADAPT activists were arrest-ed today after demanding a hearing for the Community Choice Act of 2007. Remembering the multiple offices shutdown that ADAPT engineered in September of 2005, the inhabitants of offices in the Rayburn House Office Building pleaded for quick action from the Capitol Police. In the driveway on the east side of the Rayburn building, the ADAPT Community was given three quick warnings to disperse before about 40 people were arrested. Three groups took over the of-fice the House Energy and Commerce Subcommittee on Health, as well as the offices of Rep. John Dingell (D-MI) and Rep. Joe Barton (R-TX) "We are here at the Rayburn," said Randy Alexander of Tennessee, "because it is time for Congressional hearings on the Community Choice Act." Charged with disorderly conduct, the ar-rest documents said that each individual was "boisterous, loud and incommodious." Many ADAPT activists were held by the Capitol Police for over 12 hours. [image] [image caption] Outside Rayburn Building. Photo by Tim Wheat. The first group was released just before 9 p.m., and small groups were released until long after midnight. ADAPT stayed up late into the night and welcomed the groups back to the hotel with cheers and pizza. "When the officer told me that I was being charged for being boisterous," said Herman of Rochester, "he realized I was using sign and not talking. The officer had to ask the supervisor what to charge me; but the supervisor said everyone gets the same charge. I guess I was guilty of being with ADAPT." "I will do it again tomorrow," said Kathy Curiso following eleven hours of detention, "I will fight for the right till the day I die." ADAPT was following up on written requests for hearings from the Congressional leadership. The hearings would allow testimony into the record from people with disabilities who have been forced into institutions because of the lack of services in the community. "We've been waiting for ten years for this legislation to pass, and all the while Congress has refused to act on this national scandal," said Dawn Russell, Colorado ADAPT member. "I had to leave my home state of Tennessee to get the assistance that would keep me out of a nursing home. I want so much to be able to go home to be with my family, but I can't, because I'd be forced into a nursing home. "I won't give up my freedom, my privacy, my dignity and the control over my life, so I have to stay in exile in Colorado." On March 19, 2006, ADAPT held an historic day of testimony in Nashville that focused light on the dark halls of institutions and nursing homes all over America. Sixty people related personal accounts of horrifying and gruesome mistreatment. But the real impact of the face-to-face narratives of rape, abuse, neglect and lonely death is not to say that the nursing home industry and institutions fail, but that the community works. People with disabilities need the CCA to join typical American life and Congress needs hearings on CCA, because they have ignored people with disabilities too long. "It's easy for Congress to ignore us," said Guadalupe Vasquez of Texas ADAPT. "After all, they all make a very good living and will never have to face the prospect of institutionalization and loss of their freedom. On the other hand, many of us live on $600 a month, so we are the people who Congress, by its inaction, is guaranteeing will lose our freedom." CCA is an essential next step to ADAPT's success with last year's Money Follows the Person (MFP) legislation. MFP made it possible for states to redirect funds to Home and Community Based Services rather than expensive and undesirable institutions and nursing homes. Many states do not offer those services or similar programs that would enable people to live at home. [image] [image caption] Tomas Esquibel and Pat King outside of Rayburn Building. Photo by Tim Wheat CCA will change the institutional bias of the current system and give people with disabilities the tools they need to live and work in the community. Many people see CCA as liberation because it breaks the mold of society "caring" for "the needy" to providing people with disabilities the instrument to participate equally. [Subheading] Tuesday ADAPT Power and Progress ADAPT gained ground today, confronting two players in the campaign against institutional bias. [image] [image caption] Secretary Alfonso Jackson. Photo by Tim Wheat Housing and Urban Development (HUD) Secretary Alfonso Jackson faced up to ADAPT, promising an end to housing discrimination. HUD recently reported that 40% of the Fair Housing complaints are based on the "protected class" of disability. Jackson agreed to recover housing vouchers lost to bud-get cuts and to broker a meeting between Congress members on key committees. He vowed to eliminate the "outrageous" level of discrimination in housing against persons with disabilities and he said he would work with ADAPT. "We are committed to work with you and we will do everything in our power to make sure you have affordable accessible integrated housing options in this country," he said, adding that he experienced segregation and discrimination while growing up in Dallas. "You know, March 1965 on the E. Pettis Bridge — I was there," Jackson said, referring to the Alabama site where police attacked African American marchers. "I have the dog bite in my left leg still today." The Secretary's comments were greeted with cheers, but ADAPTers knew they had to keep the pressure on. Activists held "WANTED POSTERS" with Jackson's photo. They hoped to tear the poster up as a demonstration of faith that the pressure was no longer necessary. Cassie James, however, asked the crowd to hang on to the poster until he made good on his promises. The American Hospital Association (AHA) needed some ADAPT-style persuading before they agreed to a conversation about discharging people with disabilities from nursing homes to their own homes. Two hours after the end of Sec. Jackson's [image] [image caption] Outside Parking Garage at American Hospital Association. Photo by Tim Wheat visit, the whole of ADAPT marched to the headquarters of the AHA. One group rushed the doors, while a second group blocked the subterranean parking garage. ADAPT crowded into the lobby and blocked traffic, demanding that the AHA check the discharges of people with disabilities to nursing homes. "I wanted to go home, but the doctor said that I should go to the nursing home for just one week to get better," said Lupe Vasquez of Austin. Two weeks later I was still in the nursing home. I never got any rehab or anything. They did not get me out of bed, or even reposition me. I was getting bedsores." Dale Reid, an Advanced Practice Nurse from Denver, explained that if people with disabilities go to the hospital — even for something typical — they may be deemed not competent" to live in the community. "I believe people with disabilities are being tracked into nursing homes," Reid said. ADAPT asked the AHA to support the Community Choice Act of 2007 (S 799 and HR 1621); to send a letter to member hospitals to ensure that referrals complied with federal law; to develop a protocol so that a discharge to an institution will not discriminate against people with disabilities; and to let ADAPT present on this issue at the AHA national conference. [Subheading] Wednesday Capitol HID Success ADAPT activists spent the day on Capitol Hill contacting lawmakers about the importance of the Community Choice Act. Introduced in March, CCA will end the nation-wide institutional bias in Medicaid funding and give Americans with disabilities the real supports and services they need to get out of expensive institutions and rejoin community life. Our country's population is aging and more people with disabilities need assistance with daily living tasks. Although community services have been shown to be less expensive than institutional services, and home and community services are preferred by individuals, most public funding goes to facilities. In FY 2005 two-thirds of the $94.5 billion long term care Medicaid dollars were spent on nursing homes and other institutional services, with the rest going to community services. ADAPT has recorded a small part of the human tragedy in the DVD that activ- [image] [image caption] March home from AHA. Photo by Tim Wheat. [text continues] ists delivered to every Congress member Wednesday. The recording is from the 2006 historic Day of Testimony in Nashville Tennessee where 60 people testified about the inhuman conditions forced on people with disabilities. Following up on ongoing efforts to get the support of the Republican National Committee, ADAPT members met with Mike Duncan, the Committee Chair of the RNC. Mr. Duncan agreed to send communications to state and local organizers to cooperate with state ADAPT organizers, but he said they would not yet endorse the bipartisan legislation. It was originally introduced ten years ago by a Republican, then-Representative Newt Gingrich, when it was known simply as CASA. This action has been a great success. Sunday's picture-perfect ADAPT Fun Run garnered about $75,000. On Monday, Senator Arlen Specter agreed to request a CCA hearing after 99 activists were arrested when they took over congressional offices. Tuesday saw ADAPTers stormed the headquarters of the American Hospital Association, demanding an end to the practice of sending people straight to nursing homes. The AHA agreed to meet with ADAPT flooded the halls of our congresspersons, armed with DVD recordings of Nashville's testimonies, compelling CCA literature and most important, ADAPT member's own words. And we'll be back! [ADAPT symbol] - ADAPT (1717)
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[Heading] Delaware woman among hundreds fighting for right o live independently [image] [image caption] Daniese McMullin-Powell of Newark and fellow demonstrators prepare to enter the Rayburn building in Washington, which houses a hearing room of the House Committee on Energy and Commerce, and the offices of its chairman and another congressman with a key role on the panel. The News Journal/BOB HERBERT [Headline] Disabled activists descend on D.C. By Beth Miller The News Journal Washington-A pair of handcuffs is tucked into one side of Daniese McMullin-Powell's wheelchair-as always. She keeps a stash of about 150 pairs at home in case she needs to attach herself to a fence to hold her ground when others want her to yield. She won't need the handcuffs in this protest, though. Her job will be more pedestrian, if you can say that about someone who gets 'most everywhere in a power chair. McMullin-Powell, 61, of Newark, will be a negotiator and strategist as members of ADAPT-American Disabled for Attendant Programs Today-converge on Capitol Hill to seek support for legislation they believe will allow people to avoid life in a nursing home. Hundreds of demonstrators are in this Monday morning entourage, which starts at a Holiday Inn near the National Air & Space Museum and makes slow, traffic-stopping progress to its target about a mile away-the Rayburn House Office Building. McMullin-Powell, the lone Delaware representative, is at the end of the line, anchoring a strand of humanity that has traveled from all over the country to be here. [boxed text] Delaware's disabled face shortage of attendants. A2 [text resumes] Most are in power chairs. A few use walkers or canes. Some bring attendants, friends and family members, some have no visible means of support. They carry signs, shout slogans, blow whistles. Some roll in silence, allowing their T-shirts to speak for them. Their messages are simple: See ACTIVISTS-A2 A2 The News Journal...Saturday, May 5, 2007 [Headline] Activists: Let us live on our own, they say FROM PAGE A1 "our homes, not nursing homes!" "Not dead yet" and "Piss on pity." And, most often, "Our Choice, Community Choice. Act Now." ADAPT says the Community Choice Act will remove the nursing-home bias built into federal funding that assists those with disabilities. Robert Kafka, an ADAPT leader from Austin, Texas, says almost 70 percent of that Medicaid money ends up in nursing homes. The protesters make their way past the Voice of America building, move in fits and starts past the Department of Health and Human Services and fill most of the right lane on Independence Avenue. They roll into the driveway of the Rayburn building, where Rep. John D. Dingell, D-Mich., and Rep. Joe Barton, R-Texas, have their offices. Three groups-about 60 demonstrators-already are inside the building by the time McMullin-Powell arrives. It is a carefully planned action, with logistics known only to ADAPT's top leaders, including McMullin-Powell. She wears a headset, through which she receives regular updates from leaders stationed elsewhere. [image] [image caption] Members ADAPT-American Disabled for Attendant Programs Today-spent Monday demonstrating in the nation's capital. The News Journal/BOB HERBERT Ninety-nine demonstrators in this day's protest-including those inside-will be arrested. McMullin-Powell wouldn't mind being among them but her assignment here is to shepherd those who want to be part of the action, not the police log. "She's a good friend to a lot of people," said Roxan Perez, 52, of Brookfiled, Wis., who is a cancer survivor with multiple sclerosis. "She's always solid, and she doesn't say anything that isn't worth saying. She does what she needs to do. She's a role model of mine." Perez-whose service dog, Max, is a poodle/Bichon mix that can pull her chair almost a mile if necessary-works the line, offering sunscreen and mist from a spray bottle to those feeling the effects of the sun. Perez spent six days in a nursing home when her family thought there was no other option. "A lot of people don't know there are options," she said. "We need more advocates inside nursing homes. ... [ADAPT] gives people choices like everyone else has. We are getting more money, but the majority of it still goes to institutions." McMullin-Powell has been fighting this battle-and the battle for accesible transportation and integrated housing-on the front lines nationally and in a quieter way in Delaware, where she founded the state's chapter of ADAPT and leads the State Council for People with Disabilities. "ADAPT is my passion," she [text cuts off] [Subheading] Persistence and perseverance Today, as McMullin-Powell and her Labrador, Inky, circle Capitol Hill with the line, they pass places that are far more than tourist attractions to her. She remembers camping overnight in front of the Supreme Court in 1999 so she could hear the arguments made in the Olmstead case, now a landmark decision that requires states to allow people with disabilities to live in the "least-restrictive" environment. She remembers spending a night in 20-degree weather outside the Department of Health and Human Services. She remembers handcuffing herself to the fence outside the White House, when ADAPT wanted Bill Clinton to allow federal funds to follow the person they supported, instead of going to a program or a facility. Al Gore came out and talked to the group that day, she said, and the money stream has started to shift. She know many of those around her form previous actions-including the times they lay down in front of Greyhound buses to insist on accessibility-and many know her. Some, like Cassie James of Philadelphia, were born with a medical condition. "I'm mostly here because I think nursing homes are the most horrific rights violations in our country," said James, who has spina bifida. "Look what we take for granted-our dignity and control and the ability to live life the way we choose. If we had the supports, we could be as free as anybody else." Others, like Ben Barrett of Trego, Wis., joined the disability community later in life. Barrett, 49, was mugged, beaten and left unconscious on railroad tracks in Appleton, Wis. He was hit by a train, lost his left arm, had all but one rib broke, his lungs punctured, five vertebrae crushed, and sustained a compression fracture in his neck. His "spark got lit" for this mission when he was about to leave the rehabilitation center. Officials planned to send him to a nursing home for six months, at $3,000 per month. "But I had friends who came and built a ramp to my house," he said, his voice quavering. "It was no more than $800....What's cheaper for America?" [Subheading] 'Waiting 10 years' Out in the Rayburn driveway, a longtime Dingell aide-Bridgett Taylor-is meeting with Kafka and ADAPT leaders including McMullin-Powell. ADAPT insists Dingell Schedule a hearing on the Community Choice Act, which was introduced in 1997 and has languished ever since. Dingell, though supportive of Medicaid, has ignored their letters and requests, Kafka says. "We're not going to leave until we get a commitment," said Kafka, who had a spinalcord injury that left him with quadriplegia. Taylor tells them she can't reach Dingell; he's she can't reach Dingell; he's out of town. She promises to talk to him Tuesday, to "exert every bit of energy I have to get him to hold a hearing on it." She starts to cry. At 11:51 a.m., police Capt. Mark Sullivan asks the group to "cease and desist" or arrests will follow. He is firm but polite. Kafka, who has been arrested 35 times before, stays put with several dozen others. He is polite but firm. "People have been waiting 10 years," he said. McMullin-Powell puts her chair into gear and heads to a nearby park with those who have decided not to be arrested. They watch and cheer as police escort their comrades-one by one-down the street to a door on the ground floor of Rayburn, where they will be processed. Bystander Shane Piccinini, who works with a civics education program in Nevada, watches from the sidewalk. "I'm a little leery of a one-size-fits-all policy," Piccinini said. "But these folks have a long row to hoe-and they don't have Bono to draw attention to their cause." The demonstrators are hungry, thirsty and trying to find share, but nobody whines-not publicly anyway. "People in nursing homes are counting on us," Mike Oxford, 49, of Lone Star, Ka., reminds them through a bullhorn. "If you get hot or inconvenienced, think about them." They cheer and another chant begins" "I'd rather go to jail than die in a nursing home." An hour later, the queue heads for a the hotel, taking a longer route to distribute more leaflets and spread their message a little further. "if they don't see us, they don't mind us," Barrett says. "That's why it's so easy to put us in an institution." McMullin-Powell, bringing up the rear again, looks at those around her. Some are drooling. Some have twisted faces. Some look defiant, some triumphant. "I love these people, " she says. And she hopes to be in their company for years to come. "it's my life," she said. "I live it every day. It's not something you can retire from." She puts her chair in gear and rolls-behind them all the way. Contact Beth Miller at 324-2784 or bmiller@delawareonline.com. - ADAPT (1716)
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[first article continues from another, unidentified article] By about 11:15 a.m., the groups inside Rayburn have occupied the congressmen's offices and a hearing room of the House Committee on Energy and Commerce, where Dingell is chairman and Barton the ranking member. The navy blue informs of the Capitol police appear in greater numbers. One is carrying an assault rifle. Demonstrators have to decide whether to leave the area or stay. If they stay, they will be arrested. [Subheading] 'A sense of injustice' McMullin-Powell wasn't interested in getting arrested when she first took up with this bunch 11 years ago. She was permanent disability with post-polio syndrome, and had been readingJoe Shapiro's book "No Pity." In it, she learned about ADAPT's efforts to promote the rights of those with disabilities. The work made sense to her and she decided to go to Atlanta for one of the group's events. She got arrested twice. "It was just too inspiring," she said. "You can't be in the middle of people like that and not do what they're doing. You can't back off when you see the passion they have. There was a sense of injustice as to what was going on-and that hasn't decreased at all." [image] [image capition] Daniese McMullin-Powell has earned colleagues' respect for her dedication and feistiness. [text resumes, but is cut off] said. "The state council is an outlet for that passion, but a bit more subdued because it's with the state." Her family and friends sometimes roll their eyes when they hear of some of her activities, she said. And she is frustrated by the lack of involvement in "wimpy" Delaware. "But a lot of my friends want to be more involved. and just can't," she said. "I guess they don't quite get that little but of an edge they need to put them over." [new article begins] [Headline] Shortage of attendant services keeps many disabled institutions By Beth Miller The News Journal Washington-Daniese McMullin-Powell and other members of ADAPT are pressing lawmakers to give people with disabilities more say and better options in where they live. This week, they protested in Washington, D.C, to draw legislators' attention to the Community Choice Act, legislation they said would give people who want to live in the community-instead of nursing homes-a better shot at federal funds. According to a survey this year by the state Department of Health & Social Services, 797 of the approximately 6,800 people living in Delaware nursing homes said they would prefer to be living in the community. But the community-based support available-nurses, attendants, affordable housing and the like-cannot match the demand. And not all who want to live in the community are able to do so, said Pam Tyranski, deputy director for Medicaid and Medical Assistance for the state social services department. "In Delaware, nursing-home beds are in such demand, we are not seeing inappropriate placements into nursing homes," Tyranski said. "If clients had more opportunities for housing in the community, who's to say that ratio wouldn't shift if they had other alternatives? But we are tight on beds." Tyranski said two primary obstacles keep people in institutional settings. "The nurses in our long-term-care unit will always explore the least-restrictive environment for every client," she said. "Their biggest obstacles are a safe place that is accessible for the client. There are a lot of folks who have no family, friends, and no one willing to take responsibility for coordinating care and helping out clients in the community." Sen. Joe Biedn, D-Del., is among the co-sponsors of the Community Choice Act. "For many years now, I have supported efforts to allow people with chronic illnesses and disabilities to live in the least restrictive, most comfortable environment possible," Biden said in a written statement this week. Rep. Mike Castle, R-Del., also suuports the bill, which creates incentives for states to provice community-based attendant services. "It is necessary to match those in need with the adequate and necessary level of assistance, and this bill creates an additional option of keeping people in the comforts of their own home while providing care," he said. Staffers for Sen. Tom Carper, D-Del., said he supports the idea behind the bill. In Delaware, the Governor's Commission on Community-Based Alternatives has worked on. a comprehensive plan for enhancing community supports for people with disabilities. The commission, chaired by Rita Landgraf and Vincent Meconi, secretary of the social services department, expects to complete its five-year plan this summer. McMullin-Powell is a members of the commission. Contact Beth Miller at 324-2784 or bmiller@delawareonline.com - ADAPT (1718)
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