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The Council for Disability Rights |
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April 2004
The Roller Coaster in Passing the Health Care Justice Act The agreed-upon amendment with Senate Insurance Chairman Jacobs no longer was agreed upon as of last Tuesday. He refused to call the amendment for a vote. Options for further activity were: (1) Take the amendment to another committee; or (2) since the bill was on 2nd reading already, call it for 3rd reading (full Senate vote). We decided to do the latter. Result : During the first hearing (March 2nd) of the Health Care Justice Act, Senator Obama stated that he would not move the Health Care Justice Act (HCJA) forward until discussions between proponents and opponents could be held.
Next steps: HB 2268 will be sent to the Senate Health and Human Services Committee for action during either the week of April 19th or 26th. HB 2268 will be amended with this year's new language for the Health Care Justice Act. A full Senate vote will then occur. After passing the Senate, HB 2268 will then be sent to a House committee for concurrence (since it already passed the House). After passing the committee, the full House will have to vote for concurrence. The support for this bill in the House this year is stronger today than it was last year when it was passed. Enough is enough. Pass the HCJA now! Whether this is a political game to delay the passage of the HCJA or not, it is time to turn up the pressure. We have the votes in the Senate and the House. It is time to act. It is time to take action. Take action! Call Senate President Jones and tell him to pass the Health Care Justice Act. The House passed this bill last year; it is time for the Senate to pass it as well. The votes are there! Call your State Senator and ask them to do three things:
Source: cbhconline2 Condo Rule Biased, Suit Says Boy in wheelchair told to use back door By Matt O'Connor A 9-year-old boy who uses a wheelchair because of physical and developmental disabilities has been forced to use a rear service entrance by the board of a suburban condominium complex where he lives, a federal lawsuit filed Monday alleges. The suit, which says the restriction violates the U.S. Fair Housing Act, contends the boy was barred from using the front door of Triumvera Towers Condominium in Glenview out of unwarranted concerns that the wheelchair could damage the entrance. "My son is not a piece of furniture. He is a human," said Claudio Trujillo, whose son, Jaime, cannot walk or speak because of a seizure disorder. "He is entitled to every right." The suit seeks unspecified monetary damages for "pain, suffering and humiliation" from the 16-story condominium complex's board of directors and its president, identified as Sarah Stollberg. Stollberg did not return a telephone call seeking comment on the allegations. In a statement Access Living, an advocacy group for the disabled that filed the lawsuit on the family's behalf, compared the prohibition on wheelchairs using the front entrance of Triumvera Towers to African-Americans being forced to sit in the back of the bus or drink from "colored-only" water fountains until the 1960s. Claudio Trujillo and his wife Luz, both Colombian immigrants who came to the U.S. seven years ago, sought the approval of the complex's governing board to buy a two-bedroom unit last summer, according to the lawsuit. The couple have a second child. During an interview with the board, Claudio Trujillo mentioned that his son needs a wheelchair, prompting Stollberg to announce that was a "problem," the suit alleges. Citing concerns of damage to the front entrance, Stollberg said Trujillo's son was prohibited from using it and must use a rear door "otherwise reserved for furniture delivery and garbage disposal," the suit says. In a telephone interview Monday, Claudio Trujillo said he wanted to oppose the rule, but feared if he did, the board would block his family from buying the condominium. After the family moved in last September, they attempted to use the rear entrance with Jaime, but the door was barely wide enough for the wheelchair to pass through, the lawsuit says. So the Trujillos used the front entrance without incident for several months. But in a letter last month, the condominium board reiterated that the rear entrance must be used, the suit alleges. On March 4, as Jaime waited in the building lobby for his school bus with a nurse, Stollberg announced that he couldn't use the front door, and when the nurse objected, Stollberg "became angry and hostile," the suit says. Allegedly raising her voice, Stollberg threatened to fine the Trujillos $50 every time Jaime used the front door, according to the suit. Later that night Stollberg told the Trujillos that the association's rules required furniture, strollers and wheelchairs be moved through the rear service entrance, the suit says. "I have never felt so discriminated," said Claudio Trujillo, a front-desk clerk at the Hyatt Regency Hotel in Chicago. "You cannot imagine the feeling inside ourselves, especially since it's our son. He is our precious treasure." Source: The Chicago Tribune, 3/16/04 My Only Hero By Mike Ervin My sister Cris and I checked into the state-operated gimp boarding school in Chicago in 1969. She was 15 and a high school sophomore. I was 13 and in eighth grade. Cris' thick, smooth mane of brunette hair hung to the middle of her back. Her hair was very important to her. Part of it was teenage vanity — her hair obscured the arch of her scoliosis. Her housemother — that's what they called the nurse's aides who took care of us — immediately put her hair in braids. And, the housemother told Cris, next time the itinerant hairdresser came, she would shear it off to above her shoulders. No one had time to be washing and combing all that hair. My sister was panic-stricken. She felt like she'd been drafted into the marines and was being herded into the long solemn line to face the dreaded barber. It seemed we had entered a place where some people thought humiliation was so inherent in living with a disability that we couldn't even feel it any more. But then our mom stepped in. When she found out about all this, as I remember it, she measured the length of Cris' hair. Then she told the housemother that if her hair came up any shorter, she'd raise so much ass-stinging hell they'd have to rebuild the place. They never cut my sister's hair. Our mom, Irene Ervin, died in January. I realized as I broke the news to many that she was my only hero. A hero to me is someone who helps you find perspective that puts you on the right course. We have such gratitude for heroes because they make us feel as if we're not as lost. I often wonder how lost we might have been without our mother. What if my sister had no one to stop them from lopping her hair off? She might have come to accept powerlessness as the way things had to be for kids in wheelchairs. We saw that state of institutionalized listlessness in so many of the kids around us. That's what scared us most about being in the gimp school. Without our mother, my sister most likely would have died in the gimp school. Once she was so sick with pneumonia her lips were blue. None of the houseparents reported this to our mother or me. We only found out because my sister implored her roommate to call our mother. Mom came running, took one look and whisked Cris to the hospital. Our mom sent us to the gimp school reluctantly. Three years earlier she kicked my dad out, so it was just her and us. She shoveled the snow, cut the grass with a creaky push mower, changed tires and sewed us prizewinning Halloween costumes. She toted us all around Chicago in a station wagon that huffed and puffed. And if anyone tried to paint her as a martyr for is, she'd be insulted. She wasn't lugging a burden. She was having fun. We didn't feel cursed. We felt lucky. But the gimp school gave us a place to stay during the week so mom could go to secretarial school. Her waitress pay wasn't cutting it anymore. She always took us home weekends, holidays and summers. Many of the other kids lived hours away from home or were state wards with no families. Few of them graduated, let alone went to college. They just treaded water and yawned until they were too old to stay at the school and then moved on to who knows where. My sister and I graduated from gimp school, went on to college and for better or for worse, here we are. The big secret about raising kids with disabilities to be learned from our mother is that there's no big secret. All kids are talented in some way. The job of parents is to help their kids discover their talent. Kids with disabilities are no different. Our mother had the nerve to make us believe we had important talents to share at a time when there was little else in the environment reinforcing that message for a kid in a wheelchair. She embedded in us a blessed oneriness that got us through the gimp school and beyond. We could've easily gone the other way, sinking with quiet resignation in the quicksand of law expectations. She was the difference. Source: New Mobility, April 2004. A Seemingly Small Thing Can Be a BIG Thing E-mail alert organizes community presence and action By Elizabeth Patience The Northern Regional Center for Independent Living sent an Action Alert to its community regarding a same-day event recently, and it inspired a small group of five to go to the Watertown Housing Authority Mid Town Towers to hear Senator Charles Schumer speak. We carried our bright florescent signs about MiCASSA. We were greeted by folks with some trepidation as they thought we were there to protest against Schumer. We let them know we were there to show support for Senator Schumer as a sponsor of MiCASSA and also for MiCASSA itself. The group of seniors relaxed some. They asked what MiCASSA was, and I was quick with the handouts. Then the head of the Watertown Housing Authority came along and asked us to leave because our signs were not allowed in the building. We didn't argue with the man but rather stepped outside to the front doors. There we were greeted by WWTI TV 50. They asked us about our signs and MiCASSA and if they could interview us. We happily agreed to an interview. They spoke to me first and Aileen Martin covered more when I got stuck. Then the gentleman from the Watertown Housing Authority came outside and asked us what our issue was. We explained our position and he apologized, welcoming us back in. So back in we went. Senator Schumer was around 20 minutes late which gave us more time to talk to people about MiCASSA. Two reporters from the Watertown Daily Times spoke to Aileen and the other advocates. Also Matt Delsignore, from WLOT interviewed Aileen about MiCASSA. We may have been picked up by WTNY-Channel 7 and other sources but it was hard to tell. I will get the proper names of the stations and reporters later. Senator Schumer arrived. He walked through the aisle to the podium and stopped to check out our signs. He said "MiLASSA?" (I wasn't hired for my drawing ability.) Then we said no MiCASSA and said, "You sponsor it." He said, yes he knew what MiCASSA was and supports it. He went on down and had his speech. His speech was related to stopping the move to change Social Security. Alan Greenspan has issued a statement recently arguing for cutting benefits to people who are not retired yet. Senator Schumer spoke that there is a movement in Congress to follow this argument. He said, "You know sometimes Congress will ask how high when Greenspan says jump." Sen. Schumer circulated a petition to the President opposing this sort of benefit slashing in Social Security. He took questions from the floor. When all questions about the Social Security topic were covered he looked back to us and said, "Do you folks that are here for MiCASSA want to say anything?" Well, you know we did! I point blank told him that we need Congress to move now and get hearings started on MiCASSA. Also Rebecca, a volunteer advocate, spoke up on how long we have been fighting for MiCASSA and on how much money the government can save with MiCASSA through deinstitutionalization. He was also asked a question about the Our Lady of Peace legislation Sen. Schumer sponsored. I was sorry to say that his people first language skills are in the dark ages where mental illness is concerned. He referred to people with mental illness as the "mentally incompetent". I had to do some serious tongue biting on that. I did approach Schumer at the end to personally thank him for sponsoring MiCASSA and introduce myself. He was in a hurry but took the time to speak to as many of us as possible. Meantime Rebecca was speaking to the lady staffer he had with him (did not catch her name but will find out). All in all it was an awesome experience!! It also goes to show that even a little mouse can approach a lion. Source: Elizabeth A. Patience, Statewide Systems Advocate, Northern Regional Center for Independent Living, NY, March 18, 2004 Editor's Note: Bravo, Elizabeth and your small band of great friends, for a job well — and quickly — done! ADAPT Lie-In in Freezing Weather to Secure Health and Human Services Meetings, Letters Washington, DC — Braving six hours of unseasonable freezing temperatures in the nation's capitol, 500 members of ADAPT staged a "lie-in" around the Health and Human Services (HHS) Building Monday, demanding that HHS leaders restart the process to reverse the institutional bias in the Medicaid long term care program. Arriving from 7 a.m. on, HHS employees and visitors were greeted by a long string of empty wheelchairs, and the building doors blocked by several hundred persons with disabilities who were wrapped in sleeping bags and lying on foam mats. Carrying signs reading, "We're lying, cuz you're lying"; protestors chanted, "It's cold, it's freezing, but ADAPT's not leaving" until meeting with top HHS officials. With HHS Sec. Tommy Thompson out of the country, Dennis Smith, Acting Administrator for the Centers for Medicare and Medicaid Services, met outside in the cold with all 500 ADAPT members. Pressed by ADAPT, Smith issued a letter committing incoming CMS Administrator Mark McClellan to a meeting with ADAPT within 30 days. With phone confirmation from McClellan, Smith also promised that regular meetings between ADAPT and HHS officials would resume. As the protesters disassembled the lie-in and received assistance to return to their wheelchairs, 15 ADAPT members met with Smith inside HHS to negotiate on the additional ADAPT demands. Smith and HHS agreed to meet one of those demands by issuing a "Dear State Medicaid Directors" letter. The letter will underscore for states that they currently have the ability, with no regulatory or legislative changes, to move people from nursing homes and institutions by transferring the funding to the preferred community services. States like Kansas, Texas and Montana have utilized this approach to move many people out of nursing homes and can offer information and guidance to other states. Further, the letter will encourage all states to utilize this strategy to provide more home and community based services, as per the US Supreme Court Olmstead decision that ruled that forced institutionalization of people who can be served in the community amounts to illegal segregation. "Were here in Washington to meet with everyone who can help us remove the institutional bias in Medicaid," said Shona Eakin, ADAPT Organizer from Pennsylvania. "That means people in the Medicaid system, like today, and people in Congress who can hold hearings on and pass MiCASSA (S.971 and H.R. 2032) and the Money Follows the Person Act (S. 1394). And we won't give up until all disabled and older Americans have choice in where they live and receive the services and supports they need." MiCASSA, the Medicaid Community-based Attendant Services and Supports Act, and Money Follows the Person would both provide people the choice to receive services in their own homes and communities rather than be forced into institutional settings to receive those services. On the Senate side, both bills are stuck in the Finance Committee, chaired by Sen. Chuck Grassley (R-IA) with Sen. Max Baucus (D-MT) as the ranking minority member. In another gain Monday, ADAPT received a personal statement of support from Democratic Presidential candidate, John Kerry, which said in part, "I applaud the more than 400 ADAPT activists uniting in Washington, DC to demand their voices be heard regarding the critically important issue of ending the immoral institutional bias in the Medicaid program. I am firmly opposed to the Bush administration's proposals to turn Medicaid into a block grant to the states. We must strengthen and protect Medicaid. We should help states carry out the Olmstead decision and enact MiCASSA and the Money Follows the Person Act. As with racial segregation, we must put an end to the institutional bias in Medicaid that prevents millions of Americans of all ages from experiencing freedom, independence and choice." For more information on ADAPT, visit our web site or contact Bob Kafka at 512/431.4085 or Marsha Katz at 406/544.9504 
ADAPT
Source: ADAPT Listserv, 3/28/04. Follow-up to MiCASSA / MFP Hearing Hundreds of advocates attended the hearing on the institutional bias; an overflow room was required to hold everyone. There were folks from Connecticut, Delaware, DC, Florida, Iowa, Kansas, Maryland, New York, Pennsylvania, Texas, Virginia and Washington states. Many of the Senators themselves, as well as staff, were in attendance at the hearing thanks to YOUR work! Senator Grassley, the Chair made opening remarks about the need to end the institutional bias, and Senator Baucus, Ranking Minority member did too, as well as a couple of other committee members. Senator Harkin spoke eloquently about both his bills, S. 971 MiCASSA and S. 1394 Money Follows the Person. He spoke about how we had passed the ADA but had left this important piece to be done. He spoke of the fact that while the hearing was terrific, we need to act to pass this important legislation now. Dennis Smith, Director of Medicaid, outlined the Administration's bill which includes Money Follows the Person, as well as several other initiatives regarding family caregivers, recruiting direct care workers and more. Carol Novak represented the National Council on Disability, and she outlined many of the costs of maintaining the current institutional bias and the need for change. Ray Gerke, Iowa Olmstead Real Choices Consumer Task Force, who as a young person lived in an institution and then got out again to live with his family, spoke about the contrasts in his life before and after, and how the institution had terrible effects on his life. Bruce Darling of ADAPT and Director of the independent living center the Center for Disability Rights, represented those who have been working to help folks move out of nursing homes and other institutions. He eloquently outlined the need for change, the impact on people's lives, and the solutions: Money Follows the Person and MiCASSA. He also emphasized the time for action and change is NOW! Also testifying were representatives of family caregivers (Jan Moss) and direct care workers (Di Findley, Executive Director, Iowa Caregivers Association, Des Moines, IA), who spoke about the need for respite and the need to improve benefits for direct care workers. Several of the Senators, including Binghamen of NM, Baucus of MT, Jeffords of VT, as well as Grassley of IA asked important questions. Senator Lincoln of AR asked about cash and counseling and Senator Graham of FL asked about funding for the Medicare prescription drug bill. After Harkin testified he came down to visit with the people in the overflow room and then went back to his office for a little while. He returned for the press conference after the hearing and said that he had gotten calls from several Senators regarding cosponsoring his bills (MiCASSA and Money Follows the Person)! After the hearing the National Council on Independent Living hosted a press conference. Advocates also made visits to their Senators and Representatives after the hearing. YOU can still submit written testimony to the Finance Committee for 2 weeks, please do so. The Senators and their staff were clearly affected by the strong presence and interest in the topic. Include the hearing date (April 7, 2004 and the topic, "Money Follows the Person." At the top of each page put page #, Senate Finance Committee, Testimony of (Your Name), "Money Follows the Person." Limit to ten pages or less. Sign it. Send it to: Senate Committee on Finance Attn: Editorial and Document Section, Rm. SD-203 Dirksen Senate Office Bldg. Washington, D.C. 20510-6200 Keep contacting the Senate Finance Committee and Congressional Representatives; thank them for the hearing and ask them to pass MiCASSA (S. 971) and Money Follows the Person (S.1394) in 2004. This hearing was a big step in the right direction. We need to build on the momentum of the hearing. Keep contacting the Finance Committee and Congressional Representatives; thank them for the hearing and ask them to pass MiCASSA (S. 971) and Money Follows the Person (S. 1394).
S. 971 MiCASSA
S. 1394 Money Follows the Person
Hearing testimony transcripts
National Council on Independent Living
Contact information for the Senate Finance Committee and Congressional Representatives
Source: Justice For All, and Stephanie Thomas, ADAPT, April 8, 2004 36 Million Americans Lack Health Care A new state-by-state analysis found that 36 million Americans do not have access to basic health care because they live in communities with an acute shortage of health care providers. The study, by the National Association of Community Health Centers, found nearly half of the so-called "medically unserved" have health insurance, almost half are from low-income families, and nearly two in five are members of minority groups. Texas has the highest "medically unserved" population in the US, followed by Florida, Georgia, Louisiana, Michigan, Missouri, New York, North Carolina, Ohio, Pennsylvania and Tennessee, the report indicates.
NACHC report: "A Nation's Health At Risk"
Source: anselmo2@aol.com, March 26, 2004 Mental Health Summit Supports HB 5000 The Mental Health Summit — a statewide coalition of mental health advocates, persons with mental illnesses and the families and mental health service providers — urges passage of HB 5000. Its intent is to insure the implementation of DHS' new Maximizing Accountability and Excellence (MAX) initiative to deliver mental health services in the community. HB 5000 is needed for the following reasons:
The fees provided for those services which will be eligible for state funding are inadequate. DHS will no longer fund mental health services in nursing homes dedicated to serving people with mental illnesses even though neither DHS nor any other state agency is willing to require that IMDs themselves provide mental health services or otherwise comply with the Mental Health and Developmental Disabilities Code. Federal matching funds obtained through Medicaid will no longer be preserved in the Mental Health Fund but will be diverted to the General Revenue Fund. Funding for community mental health services will decline by at least 25%. Although DHS proposes to loan community health providers funds for a two year period, the delays in payment under a FFS model will greatly exacerbate existing cash flow problems for community providers, many of which are small not-for-profit agencies with little or no ability to borrow funds pending state reimbursement. Thus, the FFS model will cause some providers to go out of business. The Summit also supports the concept of selecting community mental health providers through a RFP process, but believes the MAX initiative has the following serious problems: Any method for selecting community mental health providers must provide adequate guarantees for continuity of care. The MAX initiative does not do so. The Surgeon General's recent report, "Mental Health: Culture, Race and Ethnicity", has emphasized the importance of delivering mental health services in a culturally competent manner. The MAX initiative does not assure that this will occur. For more information, contact the Summit Facilitator, Mark Heyrman, 773/702.9611.
More information and background on MAX
April is Fair Housing Month Here is one way to celebrate. On Saturday, April 24, a seminar will be held in Bensenville from 9:30 to 3 PM. Learn how to enhance your home to meet your own accessibility needs from nationally recognized experts and practitioners as well as from consumers who have made their homes accessible. Topics will include common accessibility problems and solutions; elegance in accessibility to enhance resale value; choosing all the right people for the job; problems, pitfalls, and personal experiences; nightmares and success stories; keys to success . . . planning ahead; and the occupational therapist's perspective on modifications. Each registration includes a boxed lunch and beverages during breaks; cost is $17.50 per adult; $7.50 per child. For more information, contact Extended Home Living Services at 847/215.9490. Arts & Access Exhibition Invites Visual and Literary Work Professional and non-professional artists, over age 10, having any type of disability are encouraged to participate in the fifth annual Arts & Access 2004 Exhibition presented by VSA arts of Chicago. The exhibition, which will be held at the James R. Thompson Center, 100 West Randolph Street in Chicago, July 12-22, 2004, is just one component of the Illinois Department of Human Service's ADA: Ticket to Independence Event on July 22, 2004. Artists are welcome to submit one unframed, but matted two-dimensional visual or literary artwork for exhibition. Artworks may be sold and artists receive 100% of all sales proceeds. Organizations and individuals should call VSA arts of Chicago for Participation Forms and NEW Submission Guidelines. Space is limited and Participation Forms are accepted in the order in which they are received. Call us at 312/527.2620(Voice) or 711 (IL/TTY Relay). Free Trunk Lift If you are interested in a Bruno lift that would fit in a car trunk, write the CDR office. It is now in a 96 Olds 98. | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
