Print Friendly VersionMay 2006, Issue 101
ADVOCACY ACTION NEWS
May 2006, Issue 101
FEDERAL/NATIONAL
WISCONSIN
LOCAL
ADA/FAIR HOUSING
RESOURCES ON THE INTERNET
EVENTS/ANNOUNCEMENTS
• Mental Health Month
• Lyme Disease Awareness Month
• Tuberous Sclerosis Awareness Month
• National Osteoporosis Awareness & Prevention Month
• National High Blood Pressure Education Month
• Skin Cancer Awareness Month
• Asthma and Allergy Awareness Month
• Older Americans Month
• Better Hearing and Speech Month
• Healthy Vision Month
• National Arthritis Month
• National Brain Injury Awareness Month
• Multiple Chemical Sensitivity Month
• Children's Mental Health Week, May 1-7th
• National Alcohol- and Other Drug-Related Birth Defects Week, May 6-14th
• National Stuttering Awareness Week, May 9-15th
• National Neuropathy Week, May 16-20th
• Tinnitus Awareness Week, May 21-28th
• Schizophrenia Awareness Week, May 22-28th
• Older Americans' Mental Health Week, May 22-28th
• National Anxiety Disorders Screening Day, May 4th
• HIV Vaccine Awareness Day, May 18th
• Fibromyalgia Awareness Day, May 12th
• Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) International Awareness
Day, May 12th
Monthly News Bulletin Published by IndependenceFirst
Cindy Bentley—Self Advocate and Disability Rights Activist
By Alie Kriofske Mainella
When Cindy Bentley came into this world in 1957, her doctors gave her 24 hours to live. She was born with fetal alcohol syndrome and had other complications due to her mother’s drug addiction. She proved to be as strong a child as she is now as an adult. She fought for her life and lived to tell her story. Today she is a world traveler, Special Olympian, renowned advocate and much more. She works at People First WI as the Advocacy Specialist and is always ready to help out consumers with questions and issues. She is charismatic, friendly and an excellent communicator. When asked what she is most proud of, Cindy has a list: Being a self-advocate, having her dream job at People First WI and “that people believe in me and listen to what I have to say and value me as a person.”
After Cindy’s difficult entrance to the world, things did not get easier. She was placed in several foster homes and in one of them was given third degree burns by her foster mother who set her shirt on fire. After leaving the foster care system, Cindy was sent to the Southern Wisconsin Center, an institution for adults with developmental disabilities. Cindy was an angry young woman at the time.
Over time, she started practicing with the Special Olympics and by the mid 1980s, she had started to grow in many ways. She was playing sports year-round and made measurable improvements in her social life, education and relationships. She was convinced by her counselors and therapists that it was time to move out on her own.
Cindy moved into her own apartment in 1987 and has been living independently ever since. Today, Cindy serves on several statewide committees and coalitions, she is on the board of the Special Olympics, and is still an active sports participant. She was appointed by Governor Thompson in 1996 to serve on the Wisconsin Council on Developmental Disabilities and she has traveled abroad on advocacy efforts and with the Special Olympics. She recently returned from a trip to Scotland where she and a group of self-advocates visited the very first establishment of the People First Organization.
In addition to her work, Cindy is also an avid volunteer and can be found all over the city, state, and beyond, presenting to large audiences on self-advocacy, developmental disabilities and telling her story. She is an incredible public speaker with charisma and expertise in her subject. She fought to live and then, she fought to live independently. Now she’s fighting for the rights of herself and others all over the world.
Cindy adds one more thing that she is proud of to her list: “I am proud that what I look forward to at the end of every day is going home…my cat meeting me at the door. That is independence and I am proud of that”.
Information on this article was taken from a brief interview with Cindy Bentley and from the Heroism Project Website at: http://www.heroism.org/class/1980/bentley.htm
FEDERAL/NATIONAL
ADAPT LAUNCHES CAMPAIGN FOR ACCESSIBLE, AFFORDABLE, INTEGRATED HOUSING
In late March, over 400 ADAPT members – including many from Wisconsin - participated in a day of non-violent civil disobedience at the Nashville Office of the Department of Housing and Urban Development. Protesters blocked the entrance of the building chanting and expected a long stay after requesting a meeting with the Director. Within one hour, Director William Dirl came out to meet ADAPT.
Cassie James, Campaign Coordinator for Access Across America (AAA), presented a letter for Secretary Alfonso Jackson detailing ADAPT's demands. "See, when you meet with us, we go away," James said with a smile.
"Even with the increasing availability of services and supports in the community, people with disabilities are being stopped from relocating to housing in the community because they cannot get any real access to housing," stated James. "This affects and elderly and disabled people who continue to wait to get out of nursing homes," Ms. James continued.
ADAPT demands that HUD Secretary Jackson implement the following four policies:
1. Improve the timing and coordination of affordable, accessible, integrated housing with the receipt of home and community-based services;
2. Facilitate the rebalancing of the long term care system;
3. Implement the goals of the New Freedom Initiative;
4. Assist states in implementing the Supreme Court's Olmstead decision.
FOR MORE INFORMATION on ADAPT visit their website at http://www.adapt.org/
Tobie Tyler, South East Wisconsin ADAPT, and IndependenceFirst Board member, participates in the Nashville protest activities
SOURCE: ADAPT Listserv
REINSTATEMENT OF VIDEO DESCRIPTION IN TV PROGRAMMING - S. 900 & H.R. 951
In our society, individuals rely primarily on television programming as a means of not only entertainment, but also as a way of obtaining crucial news, weather and current event information. The ability for individuals who are blind or who have a visual disability to access information through TV is enhanced by a specialized feature known as video description. Equivalent to closed captioning for the deaf, video description is audio narration that describes the visual elements in a broadcast. This feature is accessed through a special channel programmed into most televisions called the Secondary Audio Programming (SAP) channel. Video description can make it possible for a person who is blind or who has a visual disability to know what emergency warning information is being scrolled across the bottom of the screen as well as when scenes change in television shows.
In 2002 the Federal Communications Commission (FCC) required the top 25 television markets to produce a limited amount of audio-described programming. However, shortly afterward the requirement was overturned in federal court due to challenges from the broadcasting and motion picture industries that the FCC exceeded its authority. Since that time, advocates have worked tirelessly with Congress to reinstate the video description mandate through legislation.
The blind community and advocates for adults and children with visual disabilities have succeeded in getting legislation introduced in Congress that, if passed, will reinstate video description in television programming. The bills are Senate bill 900 (S. 900), introduced by Sen. McCain (R-AZ), and House bill 951 (H.R. 951), introduced by Congressman Edward Markey (D-MA). Please contact your representatives to let them know what you think of these bills. For more information, call the American Council of the Blind at 1-800-424-8666 (V/Relay) or email at info@acb.org.
SOURCE: Justice For All Listserv
WISCONSIN
STATE'S HOME HEALTH CARE RANKED AMONG THE WORST
Home health care in Wisconsin ranked among the lowest in the nation in quality, according to a recent report by the federal government.
The state's home health care agencies overall ranked below average in 11 of 12 quality measures, according to the National Healthcare Quality Report compiled by the Agency for Healthcare Research and Quality.
The agency ranked the quality of home health care in Wisconsin as "very weak" - the same rating as last year.
The poor showing contrasted sharply with the performance of the state's hospitals, clinics and nursing homes. In those health care settings, the state ranked above average in quality performance.
The report is based on surveys and information filed with the Centers for Medicare and Medicaid Services.
Information on Wisconsin and other states is available at www.qualitytools.ahrq.gov/qualityreport/2005/state. The Web site was redesigned this year to show the overall ratings in a "performance meter" ranging from "very weak" to "very strong."
The Web site rates hospitals, clinics, nursing homes and home health care agencies as well as the state overall.
It also has information on specific quality measures. The quality measures for home health care, for example, include improvements in pain management, mobility and drug management.
The results are statewide averages and do not reflect individual home health care agencies.
Information on the quality performance of specific companies can be found at www.medicare.gov/HHCompare/Home.asp.
For hospitals, specific information is at www.hospitalcompare.hhs.gov. For nursing homes, it is at www.medicare.gov/NHCompare/home.asp.
SOURCE: Milwaukee Journal Sentinel
QUOTE OF THE MONTH
Democracy is not a spectator sport.
~Randy Schutt
WISCONSIN HEALTH PLAN INTRODUCED
Representatives Curt Gielow (R-Mequon) and Jon Richards (D-Milwaukee) have introduced a bill to establish the Wisconsin Health Plan into the legislature. While the bill has little chance of moving in the short time remaining in this legislative session, it may be considered more seriously in the 2007-08 session. The bill is the first comprehensive health insurance reform measure to be introduced on a bipartisan basis in recent memory.
The plan would require all employers to contribute to the cost of health insurance for their employees through a payroll tax, raising costs for some employers but ending the cost-shifting that takes place when one employer provides health benefits and another doesn't. It would transform the way health insurance is bought and sold in Wisconsin, potentially increasing competition. And, at least theoretically, it would force hospitals and doctors to become more efficient. Since the Wisconsin Health Plan was announced last summer, Gielow and Rep. Jon Richards (D-Milwaukee), along with David Riemer and Lisa Ellinger of the Wisconsin Health Project, have been quietly working to generate interest.
SOURCE: Milwaukee Journal Sentinel
LOCAL
MILWAUKEE JOURNAL SENTINEL PUBLISHES 3 PART SERIES OF ARTICLES EXPOSING HORRID LIVING CONDITIONS FOR SOME MILWAUKEE RESIDENTS WHO HAVE MENTAL ILLNESS
See: http://www.jsonline.com/
“Abandoning Our Mentally Ill”
PART 1: Preyed upon by opportunists and neglected by the people we pay to care for them, hundreds of Milwaukee's mentally ill people are fending for themselves. It's killing them - literally.
PART 2: How did filthy homes with questionable landlords and long lists of building code violations become acceptable housing for people with mental illness?
PART 3: A host of steps can be taken to make sure people with mental illness live in safe places. One of the first: Local bureaucrats need to stop ignoring the problem and blaming each other.
After the articles were published, public officials and mental health advocates hustled to find ways to improve conditions for people with mental illness who are living in squalor.
Officials from the city, county and state moved quickly in response to a Journal Sentinel investigation that found hundreds of mental patients living in illegal or unregulated homes, many filthy and dangerous, some deadly.
Advocates for people with mental illness called for the city and the county to set aside 100 housing units a year for the next five years for people with mental illness. Peter Hoeffel, an advocate with Disability Rights Wisconsin, said the group will join forces with the Milwaukee Trust Fund Coalition, which advocates for more low-income housing, to expand the number of subsidized housing units in the city.
SOURCE: JSOnline
ADA/FAIR HOUSING
TARGET CORPORATION SUED
The National Federation of the Blind (NFB) filed a class action lawsuit in California against Target Corporation, the nationwide discount retailer which operates more than 1,300 stores in 47 states. The suit --brought by the NFB, the NFB of California and Bruce "BJ" Sexton, a blind student going to school at the University of California Berkeley --alleges that Target's website violates the California Unruh Civil Rights Act and the California Disabled Persons Act because it is inaccessible to persons who are blind.
Online services at issue. "Blind customers should have the same access to Target's online services that Target offers its sighted customers," stated NFB President Dr. Marc Maurer. Dr. Maurer explained that persons who are blind access websites by using keyboards in conjunction with screen-reading software which vocalizes visual information on a computer screen. However, Target's website --which according to its home page is "powered by Amazon.com" --contains significant access barriers that prevent customers who are blind from: (1) browsing and purchasing products online; and (2) finding important corporate information, such as employment opportunities, investor news and company policies.
SOURCE: http://hr.cch.com/news/employment/033006a.asp
ARLINGTON, VIRGINIA TO FIX 700 INFRACTIONS ON ACCESS
Arlington officials say it will take three years and about $3 million to correct more than 700 violations of the Americans with Disabilities Act identified last year when federal officials inspected county facilities.
Arlington was one of 134 communities nationwide picked for inspections by the Justice Department as part of a federal initiative, Project Civic Access, aimed at improving civic life for people with disabilities.
County officials have outlined their plan to make the fixes, some as small as correcting the height of toilets by an inch, others as large as adjusting wheelchair ramps.
Among the changes the county has agreed to make, according to federal officials:
„Ï Modifying parking, routes into buildings, entrances, public telephones,
restrooms, service counters and drinking fountains.
„Ï Training staff members in the use of the Virginia Relay Service.
„Ï Developing a method for providing emergency management policies and
procedures for people with disabilities.
„Ï Ensuring that the county's website is accessible to people with disabilities.
SOURCE: http://www.washingtonpost.com/wp-dyn/content/article/2006/04/12/AR2006041200647.html?nav=rss_metro/va
PIZZA HUT FRANCHISEE SETTLES WITH THE DEPT OF JUSTICE
The U.S. Justice Department announced a settlement agreement under Title III of the Americans with Disabilities Act (ADA) with NPC International, Inc. (NPC), which will make NPC's Pizza Hut restaurants accessible nationwide to people with disabilities. NPC, which operates approximately 800 Pizza Hut restaurants in 25 states, is the largest single franchisee of Pizza Hut restaurants in the United States.
The agreement covers parking lots, entrances, seating areas, toilet rooms, self-service counters, and other spaces and elements. It requires NPC to:
-complete access work to all existing NPC-owned Pizza Hut properties so that each restaurant will meet minimum, detailed criteria listed in the agreement;
-survey and evaluate all NPC-owned facilities that are subject to the ADA's more stringent new construction and alterations standards at the time of their construction or alteration and bring them into full compliance;
-work with the landlords at the 180 facilities not owned by NPC, which are dedicated only to delivery and carry-out, to ensure accessibility; and
-complete ADA training of all personnel involved in the implementation of the agreement, including a designated compliance officer, and a separate training of all store managers.
For more information, call the Justice Department's toll-free at 800-514-0301 or 800-514-0383 (TTY), or access its ADA Website at http://www.ada.gov.
SOURCE: Great Lakes ADA and Accessible IT Center Listserv
CHARGING 'RETALIATION,' HUD TAKES CASE OF DISABLED RENTER
Harry Tyus wanted to pay his rent. The problem was his Social Security check didn't come on time. Each month he was a few days late, and the apartment management company for the Fairway Trails Apartments in Ypsilanti, MI, charged him a $50 late fee each time.
Tyus asked property manager Nicole Morbach if he could please pay his rent a few days late, without incurring the late fee. Morbach refused. Tyus brought his problem to the Fair Housing Center of Southeastern Michigan, which contacted Fairway Trails, asking that they make a "reasonable accommodation" for Tyus's disability.
Nope. "Doing so would result in extending a preference," they said, and denied the request. This was back in 2004. From HUD's news information service:
In July 2004, when rent was not paid on time Fairway Trails Apartments started the process to evict [Tyus]. Despite the rent and the late fee being paid on July 22, Fairway continued the eviction process. In October 2004, a Michigan court agreed that Tyus should have received the rent reset as a reasonable accommodation. The judge also ruled that Fairway Trails Limited L.P. was not entitled to a late fee for the previous two months and that the pay date would be reset.
Unhappy with the court ruling, Fairway Trails Limited L.P. informed Tyus in October 2004 that they would not renew his lease when it expired in January 2005.
Last week, HUD announced that it has charged Morbach, the management company Benchmark Management Corporation and Fairway Trails Limited, L.P. with a violation of the Fair Housing Act, for retaliation against Tyus.
According to HUD's press release, "Housing discrimination charges heard before an administrative law judge carry a maximum civil penalty of $11,000 for a first offense, in addition to actual damages for the complainant, injunctive or other equitable relief, and attorneys’ fees. Sanctions can be more severe if a respondent has a history of housing discrimination. If either party elects to go to federal district court, either party may request a jury trial, and punitive damages may be awarded."
SOURCE: http://www.raggededgemagazine.com/departments/news/000869.html
DEAF STUDENTS FILE LAWSUIT OVER FEE FOR DRIVER'S ED INTERPRETER
A group of deaf teenagers are suing five driving schools in central Minnesota, claiming the schools violated federal and state human rights laws by refusing to provide sign language interpreters. They are seeking a minimum of nearly $300,000 in punitive and compensatory damages.
School owners say they want to do the right thing, but the cost is high -- as much as 10 times the cost of the course. Since the suit was filed at least two schools have said they will begin paying for interpreters.
The teens' attorneys claim state and federal laws make such accommodations mandatory.
The U.S. Department of Justice settled a similar case against a Wisconsin driving school in 1999. In that case, Wold Driving School of Wausau was found in violation of the Americans with Disabilities Act and ordered to reimburse a deaf student for interpreter costs.
Midwestern driving schools usually charge between $250 and $300 for 30 hours of classroom time and six hours of behind-the-wheel training. It would cost about $3,000 to get an interpreter for that many hours. Since the suit was filed, Kleis' school and the Superior Driving Academy in Sauk Rapids said they have agreed to cover interpreter costs. Superior Driving Academy will reimburse interpreter costs for Breitbach and Amelia Boos, another deaf student who attended class there. The families paid for interpreters on their own after, they say, the school initially refused.
SOURCE: http://www.kare11.com/news/news_article.aspx?storyid=122462
DISABILITY DISCRIMINATION LEADING REASON FOR FAIR HOUSING COMPLAINTS TO HUD IN 2005
According to the US Department of Housing & Urban Development (HUD) FY 2005 annual Fair Housing Report, disability discrimination has again surpassed racial discrimination as the number one basis for fair housing complaints to HUD. In 2005, HUD received 1095 complaints of disability discrimination (49% of all complaints) as compared to 911 (41%) for racial discrimination, By comparison,in 2004, HUD got 1112 complaints of disability discrimination (39% of all complaints) as compared to 1130 complaints of racial discrimination (40%) .
A copy of the report may be obtained from www.hud.gov/offices/fheo/library/FY2005_Annual_Report.pdf.
SINERGIA WINS $175,000 SETTLEMENT IN DISCRIMINATION SUIT
Sinergia has won a $175,000 award in a settlement against a Manhattan landlord. The suit, which was filed by the U.S. Attorney for the Southern District of New York, grew out of the refusal by Kaufman Realty, to lease space at 460 West 34th Street to Sinergia for a day habilitation program serving adults with developmental disabilities. Sinergia had been working with the landlord and an architect on plans to relocate both the program and its administrative offices to the building last October. Kaufman subsequently refused to proceed with a lease for the space after another tenant raised concerns about the proximity of the adult day rehabilitation program to its own pre-school program on the same floor.
"The voice of persons with disabilities has been heard," said Cuadra-Lash in response to the settlement announcement. She acknowledged the assistance of the Fair Housing Justice Center (FHJC) of HELP-USA in filing the complaint with the Department of Justice.
"We are glad we could help a housing and social service organization like Sinergia exercise its rights under the ADA," said Diane Houk, Executive Director of the FHJC. "By pursuing its claim, Sinergia has sent a clear message that it is unlawful to discriminate against organizations serving people with disabilities."
SOURCE: Press Release
RESOURCES ON THE INTERNET
The National Center for Education in Maternal and Child Health at Georgetown University released a new knowledge path edition that offers a selection of current, high-quality resources about caring for children and adolescents with special health care needs. This knowledge path for health professionals, policymakers, program administrators, and families includes information on (and links to) websites, electronic and print publications, databases, and online discussion groups.
Separate sections list resources on specific aspects of care and development such as adolescent transition, advocacy, financing, and screening. This knowledge path is available at http://www.mchlibrary.info/KnowledgePaths/kp_CSHCN.html .
Knowledge paths on other maternal and child health topics are available (See http://mchlibrary.info/KnowledgePaths/index.html ).
EVENTS/ANNOUNCEMENTS
CELL PHONE RECYCLING
The IndependenceFirst Violence and Abuse Advocacy Team is collecting used and unwanted cell phones which will be provided to domestic violence victims or potential victims to call 911 in the event of an emergency. A cell phone can be programmed to call 911, regardless of whether the user has purchased a service plan or not. The phone simply needs to be fully charged. If you have a cell phone that you would like to donate, please drop it off at IndependenceFirst, there are collection boxes on all 3 floors. Collection will continue until the end of October.
SOURCE: Submitted by Leslie Myers
CYCLING ACROSS AMERICA
Two young triathletes (Patrick Blair and Adam Driscoll) and a fellow athlete (Jesse Stump) will ride across America during the summer of 2006 to raise awareness and to support children with disabilities in Ghana as well as American with diabetes (see http://www.adventuresforthecure.com/webpages/mission.html ). These triathletes chose diabetes since one of them (Adam Driscoll), one of the founding AFC members, has Type One Diabetes. They want to show people that having diabetes does not mean your life is over! They also want people know that Type II diabetes is one of the leading killers in United States and a healthy lifestyle is very important.
In addition to the three cyclists, Phillip Knowlton will be driving the support vehicle, and two of the world's premiere endurance athletes will be joining the trio: Dean Karnazes and Emmanuel Yeoboah. Dean Karnazes is an American who has run hundreds of miles at once for to raise awareness and support for children with special health care needs. Dean is one of the world's premiere runners and endurance athletes. Emmanuel Yeobah was born in Africa. He biked 600km across Ghana, Africa show others that having a disability does not mean inability!! Emmanuuel is tough as nails. He is an inspiration to thousands of people across the world.
The riders will all be riding on fixed gear, single speed, road bikes. They chose fixed gear bikes to make their cross country trip that much tougher. Many people have ridden across country on bicycles but far fewer have done so with a single speed fixed gear. During their ride they hope to give speeches/talks at cities and to get the word out as much as possible about what we are doing. They want people to know about diabetes and that it can be defeated. They also want people know what it is like to be born with a physical or mental disability in an impoverished country that has traditionally viewed such disabilities as a curse.
To read more about this exciting and unique endeavor in honor of people with disabilities everywhere, and to follow the adventures of the athletes, go to http://www.adventuresforthecure.com.
MAY 12TH - CHRONIC FATIGUE SYNDROME (Myalgic Encephalomyelitis) INTERNATIONAL AWARENESS DAY
This condition is characterized by profound fatigue, not alleviated by rest, lasting six months or more, generalized muscle weakness, ache or pain, concentration problems, sleep disturbance, headaches, dizziness, and other persistent problems.
In Wisconsin approximately 20,000 men, women, and children are affected. The Wisconsin Chronic Fatigue Syndrome Association is a non-profit corporation dedicated to assisting patients and families. We offer information, a quarterly newsletter, support groups, and additional services. For more information call: 1-608-834-1001 (V/Relay) or e-mail wicfsme@yahoo.com
SOURCE: Submitted by Deborah Ullenberg
Alternatives 2006 Conference - "Blazing the Trail to Recovery Through Transformation" October 25-29, 2006 in Portland, Oregon
Center for Mental Health Services Application for Financial Support Application deadline: May 19, 2006
The Center for Mental Health Services (CMHS) within the Substance Abuse and Mental Health Services Administration (SAMHSA); and the Support Technical Assistance Resource Center (STAR Center) through a contract with AFYA, Inc. (AFYA) are providing financial support to consumers of mental health services who wish to participate in the 2006 Alternatives Conference. The conference host is the Consumer Organization and Networking Technical Assistance Center (CONTAC). The purpose of the scholarships is to foster transformation of mental health care to focus on recovery.
Please note: To be eligible for this scholarship, a completed application and letter of recommendation must be received by U.S. Mail, postmarked on or before the deadline of May 19, 2006. NO FAX OR EMAIL SUBMISSIONS WILL BE ACCEPTED.
Conference information is available at www.alternatives2006.org or by calling (800) 776-1286 (V/Relay).
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 the Editor, 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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