Print Friendly VersionAugust 2005 Issue 92
ADVOCACY ACTION NEWS
August 2005, Issue 92
• Children's Eye Health and Safety Month
• Eye Injury Prevention Month
• National Immunization Awareness Month
• Spinal Muscular Atrophy Awareness Month
• National Pain Awareness Month
• National Minority Donor Awareness Day - Aug 1st
Monthly News Bulletin Published by IndependenceFirst
FEDERAL/NATIONAL
WISCONSIN
LOCAL
OTHER REGIONS
RESOURCE ON THE INTERNET
EVENTS/ANNOUNCEMENTS
ADA NEWS
LEADERSHIP IN THE DISABILITY
RIGHTS COMMUNITY
From the Justice For All Listserv
Kelly Buckland, a nationally known advocate for people with disabilities, was honored in May with the 2005 Hewlett-Packard Award for Distinguished Leadership in Human Rights. One hundred-thirty people gathered for an awards program that included a speech by Emmy-winning ABC News anchor and correspondent John Quinones.
Buckland's award presentation received a standing ovation from the invited guests, including HP employees, former award-winners and persons with disabilities who have benefited from his advocacy for disability rights.
"I am especially impressed that the award acknowledges disability rights as a civil rights issue," Buckland said. "Often, mainstream America does not recognize that people with all types of disabilities should have the same civil rights and control over choices in their lives as people without disabilities."
Buckland is Executive Director of the Idaho State Independent Living Council, an advocacy group. He was instrumental in the passage of the Idahoans with Disabilities Act during this year's legislative session.
Other projects he has advocated for include a uniform state building code, amendments to child-custody codes, eliminating discriminatory language and voting rights issues. Buckland has testified before the U.S. House of Representatives and made numerous other national appearances regarding rights for people with disabilities.
Buckland also serves as the Chair of the National Council on Independent Living, where he also Chairs the Legislative and Advocacy Committee.
FEDERAL/NATIONAL
LIFESPAN RESPITE BILL INTRODUCED
From the Lifespan Respite Task Force
The Lifespan Respite Care Act of 2005 was introduced in the Senate (the bill number is S.1283) by Senator Hillary Rodham Clinton (D-NY) and Senator John Warner (R-VA).
What is a Lifespan Respite Program?
Lifespan respite programs provide coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with disabilities.
Use of Funds:
• development of lifespan respite programs at the state and local levels;
• evaluation of such programs;
• planned or emergency respite services;
• training and recruitment of respite workers and volunteers; and
• caregiver training to help make informed decisions about respite services.
For more information, contact: Jill Kagan, Chair, National Respite Coalition, 703-256-9578 (V/Relay), jbkagan@aol.com
www.chtop.com/NRC.htm
QUOTE OF THE MONTH
“Speak your mind –
even if your voice shakes!”—Maggie Kuhn
MONEY FOLLOWS THE PERSON (MFP)
From the national ADAPT mailing list - Adapt MiCASA List http://www.adapt.org
Money Follows the Person (MFP) has been introduced in both the House of Representatives and the Senate. The bill numbers are HR 3063 and S 528.
WISCONSIN
NEW SILC DIRECTOR
Announcement from Leonila Vega, SILC Chair
As part of our transition process in becoming an independent and free organization, the State Independent Living Council of Wisconsin has completed the hiring process for Executive Director. Jennifer Staab-Boyles has accepted the position and will begin August 1, 2005. Jennifer Staab-Boyles is an experienced and passionate advocate. She has experience as the statewide coordinator for a nursing home relocation project, and with administration, staff supervision, and direct care. Most importantly, she has a strong belief in the Independent Living movement. We welcome Jennifer and look forward to future as the Independent Living Council of Wisconsin Inc. (NOTE FROM EDITOR: The State Independent Living Council, or “SILC,” is transitioning out of state government into a free-standing independent organization. The new name of the organization is the Independent Living Council of Wisconsin.)
LOCAL
TWO STEPS FORWARD, THREE STEPS BACK
By Leslie Myers, IndependenceFirst
When I first met “Jane” back in January 2004, I never imagined how this case would impact our community and how it would continue impacting us even after 18 months. This is “Jane’s” story (her name has been changed to protect her privacy).
It was Jane’s employer who made the first contact with our agency. They informed me that Jane’s husband had beaten her 2 days earlier and that she had been staying at the work place ever since, but they could not let her stay there indefinitely. They hoped we could provide assistance in getting her to a safe place and to deal with the domestic violence.
Jane and I met that day and I offered her resources as we went through her various options. It was clear from this first meeting that her disabilities may cause her difficulty in reaching out for help. Her husband of 20 years had kept her isolated and dependent, so one of the first barriers we faced was that she did not know how to use a phone. Though I assisted her in making calls to our local programs, I was unable to find anyone to help. We have 2 shelters in our city and both turned her away because of her disability. Since finding her a safe place to go was the priority, I could not accept this rejection and called in the “big guns” to help me make it happen. After some prodding, pushing and “threatening” from all of us, she did find a shelter to accept her.
Since this was the first time in 20 years that she was not under her husband’s control, Jane’s disability became more pronounced. Her lack of skills to provide for her own personal care and to accomplish daily living tasks became very evident. It seemed that Jane might need intervention from Milwaukee County Adult Protective Services. This was offered to her and the call was made. It was during that call that we found out that she did not “exist” as a person with a disability (at least in the eyes of the county). She had fallen through the cracks in our system, partly because she had been at the same part-time, minimum wage job for over 20 years. She did not receive disability benefits or services and therefore, according to the county she was not registered in their system as “disabled.” They would need a diagnosis before being able to proceed.
Over the next year we would help Jane find a payee, get neuropsychological testing done so that she would have a “diagnosis,” find her a place to live, apply for benefits and get a guardian ad litem for her divorce case. But this is not the end of the story because those calls I made to the “big guns” would lead the community down a path that was long overdue. Meetings and more meetings would be held about the delay in providing domestic violence services to a person with a disability. These meetings continue through the present day. Our group has become a subcommittee of the Milwaukee Commission on Domestic Violence and Sexual Assault. The members of the committee have grown in size and our mission is clear: we will never allow victim services to be withheld simply because the person has a disability.
Some of the obstacles we stumbled over day after day, meeting after meeting were the result of differences in agency “philosophies,” misconception about each other’s role and misperceptions of disabilities as a whole. These obstacles were faced and conquered (for the most part) and we developed the “Milwaukee County Protocol for Addressing Abuse/Violence Against Individuals with Disabilities.” This document outlines our commitment to providing a unified response (D.A.R.T.-Disability Abuse Response Team) to victims with disabilities and to supporting each other’s work in providing the best possible victim services to individuals with disabilities. In May the completed document was distributed… we were all set - or were we?
Let’s call this “2 steps forward” for now. The day before the committee met (this was the meeting in which the finished product would be handed out), I was called to one of our outlying counties where I met a Milwaukee resident with a disability who had been sent to this county after the shelters in Milwaukee refused to let her in! Let’s call this “3 steps back.”
Jane’s case began in January 2004. She is still living in her one room apartment, she is constantly “picked on” by the residents she shares bathroom space with, she has been to court 4 times for her divorce, her husband has only shown up on one occasion and at that hearing he threatened her and scared her to death. He is seeking support payments from her and wants her to pay numerous bills that were incurred during their marriage; she just wants her clothes, bowling ball and maiden name back. She just was approved for Title 19 and for 2 hours of personal care services per day, 7 days a week.
Our group also began back in January 2004; we became a recognized subcommittee of our CCR and we developed a protocol for the county. Our group includes individuals from agencies representing domestic violence, sexual assault, disability, law enforcement and Adult Protective Services. We will begin cross-training events in October and will continue to meet on a monthly basis. Even though we still have some cases of individuals with disabilities who are being refused services, I am no longer alone in my outrage and have a group of people who are committed to this work who will back me up and speak out at their respective agencies. Soon I hope we will be taking 3 steps forward and only 2 steps back! Making progress in Milwaukee has been a hard road but it is slowly happening and it would never have been possible without the lessons learned from “Jane.”
UNIQUE VIBRATING CROSSING SIGNAL Press Release from Alderman Zielinski (edited)
Crossing a city street can be a difficult experience for those who are able to hear and see the traffic and crossing signals. But for those with a combined hearing and vision loss, that trip can be treacherous.
The newest in technology for those with hearing and vision loss, a vibrating and voice traffic signal has been installed at the corner of S. Superior St. and E. Oklahoma Ave. Installed with the help of Alderman Tony Zielinski, who represents the area, the system does not change the operation of the signal but simply adds features that help persons with visual and hearing disabilities who cross Oklahoma Ave.
The device is called an audio-vibro-tactile (AVT) pedestrian signal. The audio part is both a locator tone that helps those who can hear find a pushbutton as well as a voice message that comes on when the walk light is on. The vibro part is the pushbutton that vibrates when the walk light is on. This helps those that may not be able to hear the voice message. And the tactile part is a large raised arrow on the pushbutton that helps guide the pedestrian in the direction to cross the road.
Clients from the Center for Deaf-Blind Persons, Inc., have had numerous near-misses battling traffic as they navigate their way through the intersection, which includes two traffic islands. It is the main crossing for the clients, most of whom use public transportation, as they travel to and from the Center for Deaf-Blind Persons at 3195 S. Superior St.
Clients from the Center for Deaf-Blind Persons praised the decision. “The signal has enhanced my independence and made travel safer in this neighborhood,” said JoAnn Van Der Zee. “I’ve been using buses for years and this intersection has always been difficult,” said William “Bill” Thill. “The signal makes it much easier for me to travel. It’s a blessing and I’m grateful to the city and Ald. Zielinski for responding to our needs.”
The new Executive Director of the Center, Paulette Bartelt, also has low vision and uses the new signal. “It’s great that the city took this opportunity to be innovative and installed the signal at our request,” Bartelt said. “It can serve as a model for other cities.”
OTHER REGIONS
MEDICAID CRISIS IN TENNESSEE
In Tennessee, the Governor has cut Mediciad services and is moving folks who are dependent on ventilators into nursing homes. There has been widespread protest and a group of advocates are doing a "sit-in" at the Governor's offices. As of 7/13/05, the Governor ordered the cessation of food and water to the protesters.
Go to http://www.mcil.org/mcil/ for updates on the sit-ins and protests. Some stories from the website:
Enrollees Refuse to Leave, Present List of Demands, by Chris Lugo
On June 20, 2005 at 10:00am, twenty TennCare enrollees entered Tennessee Governor Bredesen's office with a list of demands, including a request to halt all of the termination of health insurance letters immediately and to provide written agreement to resume talks before June 30th and to review reforms and revenue generation that could allow TennCare to be maintained for those who are proposed to be cut and receive benefit limits.
Glenn Barnhill, who uses a wheelchair and needs the assistance of a respirator to breath, came to the Governor's office with the help of his home health aid assistant. Mr. Barnhill said that he doesn't think that the state has its priorities straight.
"I don't think that this is fair. They're going to put us in a situation where I will have to be put in a nursing home. If I go back to that I will have one nurse per thirty to sixty patients. I will be lying in my bed, flat on my back, gasping for breath, waiting for someone to help me. I feel that is inhumane. There has got to be something that could be done for this. TennCare has given me a lot of freedom and made my life worth living. What I can't understand is that there is more media coverage about poor neglected animals than there is for people that need medical care. The people that I am with feel that the State's priorities are really backwards, and that is what we want to see changed."
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Tennessee Not Only Cuts Tenncare Care, But Kicks Out People with Disabilities
By Gene Gantt, CEO, Respiratory Support Services
When asked directly by Randy Alexander what his plans were in relation to these specific cuts Governor Bredesen replied, "I'm not going to cut their services, I'm just going to put them in the nursing home."
It’s worse than can be imagined. If he plans to put vent-dependent individuals in a nursing home then it will be in a nursing home in another state. Last year more than 30 Tennesseans were sent to nursing homes in Kentucky, Virginia, North Carolina or Ohio. In Tennessee there are no nursing homes who will provide chronic ventilator care! The state doesn't have a program for this level of care.
So, worse than sending them to prison is sending them to a leper colony in another state. We are diligently working to bring some of them home. Today one came home from Kentucky, next week I hope to get another home from Ohio. It is simply inhumane.
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323,000 -- A Documentary About The Largest Health Care Cuts In American History
This chilling 29 minute documentary, “323,000," is about the 323,000 who are now losing their health care under TennCare, Tennessee's Medicaid program. It is the culmination of a 6 month investigation into the largest health care cuts in the history of America. In the course of the investigation and filming, documents were discovered that definitely prove that the drastic nature of the cuts now are part of a bigger political strategy.
To understand the REAL issues with TennCare, the motives behind the cuts, the advocacy happening now, the people who will die from losing heart, anti-transplant rejection and other medications and those on respirators losing all their in-home care that keeps them alive, you MUST watch "323,000." The documentary "323,000" is available at http://www.tenncare.org/323000.wmv
RESOURCES ON THE INTERNET
MEDICAID MATTERS
www.medicaidmatters2005.org
This website was developed through a joint effort by a number of groups, including Community Catalyst, Georgetown University Health Policy Institute, Northwest Federation of Community Organizations, the Center on Budget and Policy Priorities, Neighborhood Health Plan, and Families USA. It has been developed as a resource for people working across the country to protect Medicaid, the health insurance that 50 million of us rely on. The website stores a ready-to-use toolkit of messages, materials and dissemination ideas. Users of this site are able to download, at no cost to them, tested messages emphasizing the importance of Medicaid and the threat now facing the program. Messages are enhanced by high quality, full color photography.
This site also provides helpful suggestions for how the materials can be used as part of an existing campaign, as well as tips for launching a Medicaid Matters Campaign in your own community. It also includes an extensive list of links to other useful resources and materials generously provided by Families USA on the topic of personal stories and creating your own story banks.
EVENTS/ANNOUNCEMENTS
AIRPORT SECURITY SURVEY
From: Maureen McCloskey [MaureenM@pva.org]
If you have a disability and have recently taken an airplane trip, the Transportation Security Administration (TSA) would like to know about your experience with airport security. They are trying to reach as broad a sector as possible.
In order to assist persons with disabilities or medical conditions, TSA has developed guidelines with input from various disability-related groups and organizations. We then trained our airport screeners in the methodology needed to ensure effective, safe, comfortable, dignified, and respectful screening at all TSA security checkpoints.
From May 23 through August 23, 2005, TSA will be conducting a “Persons with Disabilities and Medical Conditions Customer Satisfaction Survey.” If you would like to participate in the survey, you can access it on-line at: http://websurveyor.net/wsb.dll/29926/pwd.htm
WASHINGTON UNIVERSITY SCHOOL OF MEDICINE, DEPARTMENT OF PSYCHIATRY
SCHIZOPHRENIA STUDY
From Michael Bedford, NAMI of Greater Milwaukee
Schizophrenia is a chronic and disabling disease of the brain. It affects about 1 to 2 percent of the population or about 2 million Americans. Washington University School of Medicine in St. Louis has been awarded federal funds from the National Institute of Mental Health to study the genetics of Schizophrenia. This study is a collaborative effort with eight other sites in the United States and Australia. The study will focus on individuals with a diagnosis of schizophrenia or schizoaffective disorder. Participants will be asked to complete a diagnostic interview and answer questions about their family history. Participants who live too far away from the medical school can be interviewed over the telephone. Each participant will also be asked to give a small blood sample for DNA research. Blood samples will be drawn by a trained phlebotomist or local physician and mailed directly to the laboratory if a visit is not possible.
All information obtained will be strictly confidential, even from family members. No family members will be contacted without prior permission of the relative who supplied the contact information.
Study Criteria
The study is looking for individuals who have a diagnosis of schizophrenia or schizoaffective disorder. Participants must be willing to participate in the study, which may include confidential interviews (lasting 2 to 4 hours) about the participant and his/her family, and the drawing of a small blood sample. Participants will be monetarily compensated to cover their time and travel.
Benefits of Participating
„X Participants who take part in this research will be contributing to the development of better treatments for Schizophrenia.
„X Participants will also contribute to the identification of genes that may increase or decrease the susceptibility to Schizophrenia.
„X If needed, psychiatric referrals will be provided.
For more information, please contact:
Michael Bedford
NAMI of Greater Milwaukee
3732 W. Wisconsin Ave.
Milwaukee, WI 53202
(414) 344-0447 (V/TTY)
mchlbedford@yahoo.com
ADA NEWS
From the Great Lakes ADA & Accessible IT Center Listserv
T-MOBILE SETTLES DISCRIMINATION SUIT
Wireless company T-Mobile USA will pay $40,000 to settle a disability discrimination lawsuit alleging that it had failed to reasonably accommodate a blind job applicant and hire him at its Lenexa facility in 2002.
TEST-TAKER GETS APOLOGY
Nearly three weeks after the 19-year-old Ferris State University student was reduced to tears when she and her service dog, Sunny, were kicked out of a Pharmacy College Admissions Test given at Grand Rapids Community College, Franklin has emerged the victor. The Texas-based testing firm has apologized to Franklin for forcing her out because she did not give advance notice that she was bringing Sunny to the test. After initially refusing to acknowledge its mistake, the company recently agreed to refund the $105 testing fee and let Franklin take it Friday for free. While he's pleased Harcourt is making amends, Franklin's father, Harry Franklin, isn't ready to drop the issue. "We're still considering a civil rights complaint just to make sure the federal government checks (Harcourt's) policies," he said.
RADIOSHACK ACCESS
RadioShack Corp. will ensure that more than 5,000 of its stores will make it easier for wheelchair users to access interactive electronic displays, according to a settlement recently announced. Wheelchair users alleged that RadioShack stores in the Washington area had barriers that denied them access to entrances, aisles and sales counters. Although the lawsuit involves 49 stores in the Washington area, all 5,000 company-owned RadioShacks nationwide are subject to changes that will provide better access for people in wheelchairs, according to the settlement.
AMTRAK CAN CHARGE EXTRA
A federal judge ruled that Amtrak can charge a group of wheelchair users extra to ride in the same car together. The wheelchair users, members of Disabled in Action of Pennsylvania, travel to Washington regularly to lobby. Amtrak told them that they could ride together on a Philadelphia-to-Washington train but that some of them would have to pay $200 more than the usual ticket price to cover the cost of removing seats. The group sued, saying the policy violated the federal Americans with Disabilities Act. The judge in the case ruled that under federal law, Amtrak must have one space to park a wheelchair and one space to store an unoccupied chair per passenger coach. It can charge extra for anything beyond that.
Advocacy Action News is published by IndependenceFirst on or about the 1st of each month. Submissions of articles are due by the 15th of each month prior to publication. For consideration, send your articles or announcements to Karen Avery, via e-mail to kavery@independencefirst.org.
Advocacy Action News is available by request in alternative formats such as Braille, large print, on disk or audiotape. It is also made available via our website. You may also receive Advocacy Action News via email instead of print copy. Contact Alie at 414-291-7520 (V/TTY) or akriofske@independencefirst.org.
If you do not have access to the internet, and would like assistance in obtaining any of the internet-based items described in this news bulletin, please contact Alie at 414-291-7520 (V/TTY).
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