IndependenceFirst - May 2005, Issue 89

Advocacy Action News

May 2005, Issue 89

SPOTLIGHT: ADVOCACY LEADERSHIP
FEDERAL/NATIONAL
WISCONSIN
LOCAL
RESOURCES ON THE INTERNET
EVENT 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
Better Hearing and Speech Month
Healthy Vision Month
Children's Mental Health Week, May 1-7th
Multiple Chemical Sensitivity (MCS) Awareness Week, May 1-7th
National Alcohol- and Other Drug-Related Birth Defects Week, May 6-14th
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 8th
Chronic Fatigue Syndrome International Awareness Day, May 12th
National Senior Health and Fitness Day, May 25th

Monthly News Bulletin Published by IndependenceFirst

Spotlight:Advocacy Leadership
From an archived article posted on npr.com (edited)

M I K E O X F O R D

Thirteen years ago, activist Mike Oxford helped a 35-year-old woman with muscular dystrophy, WyLma Mortell, to leave her nursing home in Kansas. She told Oxford she desperately wanted to be reunited with her two teenage sons. But Kansas state officials argued the woman had to stay in the nursing home, for her own health and safety.

"So we literally just set it up with her that at a certain day, at a certain time, we were going to go over there. And we literally went in and just wheeled her out of there. They were chasing us. (The nursing home) called the police."

As an active organizer with American Disabled for Attendant Programs Today, or “ADAPT,” Mike has been a disability rights activist for 20 years. He has been instrumental in researching, drafting and passing the historic legislation that gives people with disabilities the right to self-direct their personal assistance services. Oxford is now the director of the Topeka Independent Living Resource Center (TILRC). He has an understanding of why liberty is precious to people with disabilities - he has a rare degenerative disc condition and needs an electric scooter to get around.

"There's really nothing that goes on in a nursing home that can't also be provided in your own home and community -- nothing," he says.

Mike Oxford, also President of the National Council on Independent Living, leads a June 13, 2002 march on Capitol Hill in Washington, D.C. Photo by Tom Olin

Federal/National

Federal Housing Update
By Brian Peters with information from an Action Alert distributed by the National Council on Independent Living (NCIL)

At the request of the Bush Administration, Senator Wayne Allard (R-CO) introduced S. 771, the “State and Local Housing Flexibility Act of 2005.” This bill would convert the Housing Choice Voucher (Section 8) into a type of block grant program called, “Flexible Voucher Program.” Many people believe that the “Flexible Voucher Program” would be very vulnerable to budget cuts.

Another part of the bill would eliminate the affordability requirements for Public Housing. This would allow Public Housing to charge higher rent amounts.

Current housing-related cuts in the Bush Administration’s budget include:

· $4.56 billion from Community Development Block Grants (CDBG); Administration proposed to transfer much of CDBG program to Dept of Commerce
· $118 million from Housing for persons with disabilities (Section 811);
· $14 million from Housing for Persons with AIDS;
· $24 million from Rural Housing and Economic Development;
· $24 million from Brownsfields;
· Almost $286 million from HOPE VI (Housing Authority of City of Milwaukee used those funds for projects such as Carver Park);
· $226 million from Section 8 Project-Based Assistance; and
· $252 million from the Public Housing Capital Fund.

A proposal would shift the focus of HUD’s programs from mostly people who are “Extremely Low Income” (under 30% of Area Mean Income) to include more who are “Low Income” (up to 60% of Area Mean Income). A reason for this shift is most likely the fact that those who earn more don’t need as much assistance, which will save the Public Housing Authorities money.

In Wisconsin, nearly 1 in 5 of rental households are “Cost-Burdened” (paying more on housing than recommended). Approximately 91% of Wisconsin households (87% nation-wide) that are Cost-Burdened are those who are “Extremely Low Income.” In the current budget constraints, any shift toward serving more of those who earn up to 60% would result in less money for those who need assistance the most.

It is VERY important that you contact your Senator to let them know what you think of S771 and to contact all of your Federal legislators to tell them how important housing is. If you are interested in further updates on housing issues, please contact Brian Peters at bpeters@independencefirst.org to be put on the HousingForAll group in Yahoo!Groups.

National Housing Trust Fund
From Karen Avery, IF Associate Director

The affordable housing crisis affects every part of the country. Trust funds are a proven way to build needed housing. More than 280 state and local housing trust funds have produced hundreds of thousands of units across the country. There is bi-partisan support in Congress for housing production and preservation in the form of a National Housing Trust Fund. For further information, please call the National Low Income Housing Coalition at (202) 662-1530 (V/Relay) or visit http://www.nhtf.org/.

QUOTE OF THE MONTH
"Until the day when disability means as little as differently colored eyes, we will fight. And let those who oppose us run before us like wax before a flame." — Mike Oxford

Fact Sheets on Social Security & Disability
From Marty Ford of The Arc and UCP Public Policy Collaboration

Social Security provides benefits to 47 million people. They include over 7 million people with disabilities, their spouses and children. When most people talk about Social Security changes, they only discuss retirement benefits. This is a very serious concern for people with disabilities and their families because changes in the program will have a huge impact on everyone who gets benefits - not just people who retire.

The Consortium for Citizens with Disabilities
(CCD) Social Security Task Force created a set of seven Fact Sheets in March 2005 to educate people about the effects of major program changes.

The Fact Sheets discuss the following topics:
* What Benefits Do People with Disabilities and Their Families Get from SocialSecurity?
* How Does Social Security Help People with Disabilities & their Families?
* How Does Social Security Protect Young Workers and Their Families?
* How is Social Security Funded?
* How Will Individual Private Accounts Affect Social Security?
* How Are the Social Security & SSI Disability Programs Different?
* Checklist: Effect of Proposed Changes on People with Disabilities & Their Families
Electronic copies of the Fact Sheets are available to download from the CCD web site, at http://www.c-c-d.org/FactSheets/index.htm

Workforce Investment Act Reauthorization
From Mark S. Quigley, National Council on Disability

In 1998, Congress passed the Workforce Investment Act (WIA), creating authority for the Workforce Development System, a federal employment services program, which provides assistance through One-Stop Centers across the nation. This system replaced a number of smaller federally supported employment programs, consolidating the funds into what was intended to be a more user-friendly, universally accessible system of employment services. The Rehabilitation Act was included as a separate program with separate funding under the new Act. The Act also makes clear that One-Stop Centers are to be available and accessible to individuals with disabilities and includes non-discrimination language that specifically references disability.
Originally slated for reauthorization in 2003, WIA now appears to be on track in both the House and Senate to move forward in 2005. With so much of importance to the disability community in the Act, the National Council on Disability (NCD) offered to the 108th Congress detailed recommendations. NCD observations and input are included in the following recommendations, which are offered as a guide to disability-related issues for the current reauthorization process.
The full document can be found at http://www.ncd.gov/newsroom/publications/2005/workforce_investment.htm.

Medicare Part D
By Kathy Altman, IF Benefits & Employment Services Director

The Medicare prescription drug benefit called “Part D” begins on January 1, 2006. People with Medicare will have an option to choose this benefit. The monthly premium cost is unknown but is expected to be $35 to $38 per month. There are also co-payments and deductibles. Beneficiaries who cannot afford the Part D drug plan can apply for a subsidy or “extra help”.

Someone with both Medicare and Medicaid is automatically signed up for the subsidy. They need to do nothing to get the “extra help”. Generally, individual Medicare beneficiaries with a monthly income under $1,200 are eligible for this subsidy or “extra help”. A couple’s monthly income must generally be under $1,605.00. The “extra help” pays the premiums, deductibles and co-payments. It requires an “extra help” application be filed with Social Security. The federal agency, the Centers for Medicare and Medicaid will handle the Part D plans, but the Social Security Administration takes the “extra help” applications.

It is important to know how much Part D will cost before deciding which drug plan to choose. Social Security will have these “extra help” applications available beginning in May, 2005. After completing an application, an “extra help” award letter will tell the beneficiary how much Part D will cost. Then starting on November 15, 2005 the beneficiary can select a prescription drug benefit plan. With the “extra help” award letter in hand, they can make an informed choice when choosing a Medicare Part D prescription drug plan. The subsidy application is not an application for Part D. It's only a request to know how much “extra help” is available.

If you questions about Medicare Part D, contact an IndependenceFirst Benefits Specialists at 414-291-7520 (V/TTY). IndependenceFirst intends to hold informational sessions on Medicare Part D. Watch for announcements or contact us if you’d like to be sent information once we have these scheduled!

HR 1441 Federal Visitability Bill Introduced
From an email circulated by Access Living, Chicago

Ninety-five percent of federally supported homes are not required to meet any standard of accessibility. Rep. Jan Schakowsky (D-Ill.) cited that shocking fact two years ago when she introduced the Inclusive Home Design Act. The term “visitability” incorporates three requirements: at least one no-step entrance; doors and hallways wider than usual; and at least a half- bathroom on the first floor big enough to accommodate a person in a wheelchair and allow that person to close the door.
The concept of visitability has been growing for the past decade or so. In fact, many states and cities have already trumped the federal government by enacting their own
versions of this concept. The first city to do so was Atlanta, in 1992, largely as a result of the efforts of the grassroots group Concrete Change (online at www.concretechange.org). Others were quick to follow, including Arizona, Vermont, Texas, Kansas, Oregon and the cities of Chicago, Champaign, Urbana and Bolingbrook, Ill. All of these mandates require visitability features in
single-family housing paid for with public money.

The bill was referred to the House Committee on Financial Services. (Note from the editor: Currently, the only federal legislator from Wisconsin who has signed on to this bill is Rep. Tammy Baldwin.)

Wisconsin

Disability Access Lawsuit Settled
From an edited email sent by the Great Lakes ADA and Accessible IT Center

Thirteen area businesses sued by Miss Wheelchair Wisconsin have settled a lawsuit alleging Americans with Disabilities Act (ADA) violations. In January, a Florida law firm representing Hackel, of Freedom, filed several lawsuits in U.S. District Court alleging a litany of ADA violations, ranging from narrow aisles to door hardware that prevented disabled people from using the doorknob. The suits also alleged that bathroom fixtures and other items were mounted too high for those who use wheelchairs. Shumaker said changes are on the way under the advice of an expert. Shumaker said that many of his clients planned to use Options of Independent Living, a Green Bay-based nonprofit organization specializing in accessibility issues related to the ADA.

Local

SSI Managed Care Milwaukee County Pilot Project - Announcement
From Sean Gartley, Dept of Health & Family Services

The SSI Milwaukee County Managed Care Enrollment Guide is now available online in English, Spanish, Hmong, Laotian and Russian. The link to the Enrollment Guide is:

http://dhfs.wisconsin.gov/medicaid7/recipients/index.htm

Milwaukee Housing Trust Fund
By Brian Peters, IF Housing Program Coordinator

A coalition of agencies, led by Mike Soika, Executive Director of YMCA Community Development Center, is working to establish a local Housing Trust Fund. The hope is to put together a $15 million trust fund to be used for the development of affordable housing using a variety of revenue sources. It would be administered by the City of Milwaukee Community Block Administration department. The Trust Fund won a victory when Governor Doyle included in his budget an item to transfer $1.2 million from the Real Estate Transfer Fee from the County to the City. The Trust Fund was able to persuade members of the City Council on a 12-1 vote (one abstaining) to dedicate the new funds to the Housing Trust Fund. Unfortunately, the State Legislature removed the line item out of Doyle’s budget soon after the City Council vote. Some of the opposition was from the County, which would lose the funds, and also say that they do the work on the real estate fee transfer and should keep the funds. Some members of the legislature also objected to changing the rule for just the City of Milwaukee. The Council vote also directed the City Intergovernmental Relations to lobby for $5 million in funding. The Housing Trust Fund will continue to search for additional revenue sources. The group is also looking for endorsers, so if your organization would like to endorse, or for more information, please go to http://www.broomtreeenterprise.com/6955/13214.html. The Housing Trust Fund also recently picked up an endorsement from Aurora Health Care, which has pledged the use of their lobbyist on this issue.

Milwaukee Nursing Home Hurts Patients

In April, nearly 50 state and federal agents raided Havenwood Nursing and Rehabilitation Center, 3333 W. Highland Blvd., in Milwaukee. Court records filed as part of the investigation reveal that residents suffered both because Havenwood was short-staffed and because bills for drugs and medical equipment weren't paid.

In one case, a psychiatric patient jumped out a window to his death. Another psychiatric patient repeatedly sexually assaulted a fellow resident, yet nothing was done, according to the records. Other patients didn't get proper treatment for bedsores and were given expired medicines, records say.

The criminal investigation began after several current and former employees reported concerns with patient safety and financial matters, according to an affidavit that was filed in support of a warrant to search the nursing home.

Havenwood is home to 268 residents. The majority of them are funded by Medicaid, Hanrahan said. Relatives of former Havenwood residents said the government intervention is long overdue.

Report from the Mental Health Task Force of Milwaukee County

The Mental Health Task Force (MHTF) in Milwaukee County is a coalition of 43 entities - consumer groups, community service providers, state and local government, and health care providers. The MHTF is dedicated to identifying issues faced by people with mental illness and facilitating improvements in mental health services and programs in Milwaukee County.

The Mental Health Task Force was formed in 2003 to address the alarming number of emergency detentions at Milwaukee County's psychiatric hospital.

A fact finding effort that included focus groups and dozens of key stakeholders led to a Community Summit attended by more than 300 people. As a result, strategic efforts focused on three primary areas:
· Training for law enforcement to improve officers' crisis intervention skills and build partnerships with community resources;
· Establishment of a Crisis Resource Center that would provide immediate assessment, limited treatment, and referral for persons in crisis.
· Enhanced crisis prevention services - a wide range of services including greater opportunities for peer support, better crisis planning, strengthened jail diversion, and increased access to consumer-run services of all types.
The MHTF is pleased to share Critical Juncture: A Report to the Community from the Mental Health Task Force. A PDF version of this report is available for community organizations and MHTF stakeholders to include on their web sites. This report is available to view at www.mhamilw.org/advocacy/taskforce.asp

Resources on the Internet

National Council on Disability Launches New Disability Listserv

The National Council on Disability (NCD) has launched a new disability listserv that will provide critical information on issues affecting people with disabilities, including a monthly newsletter known as the NCD Bulletin, news releases, legislative updates, and other newsworthy items.

To subscribe to the NCD’s listserv, send the following command: SUBSCRIBE NCD-NEWS-L (FIRSTNAME LASTNAME) to LISTSERV@LISTSERV.ACCESS.GPO.GOV or go to http://listserv.access.gpo.gov/ and click on Online mailing list archives, then select NCD-NEWS-L and complete the short subscription form.

NCD is an independent federal agency making recommendations to the President
and Congress to enhance the lives of people with disabilities and their families. In 1986, NCD first proposed and then drafted the original ADA.

Disability is Natural Website

Are you ready for a change? Ready for some good news?

But what do apples have to do with disability? One of the five apples is green.
One American in five is a person with a disability.
A green apple is more like red apples than different. An individual with a disability is more like people without disabilities than different.
Apples are natural. Having a disability is a "natural part of the human experience" (as expressed in the U.S. Developmental Disabilities Act).
The sun shines equally on all the apples in the bowl, and it's time for the light of inclusion, opportunity, freedom, and dignity to shine equally on all people—including people with disabilities.
Welcome to the Disability is Natural website! What will you find here? Thought-provoking articles, products to promote new ways of thinking, and much, much more!http://www.disabilityisnatural.com/

"Know Your Rights" Brochure
The Substance Abuse and Mental Health Services Administration (SAMHSA) has introduced a new brochure for people in substance use disorders treatment and recovery, their allies, advocates, and employers. “Are You in Recovery from Alcohol or Drug Problems? Know Your Rights" provides information about federal laws that protect against discrimination in employment and job training, housing, health care, education, and government services and programs. The brochure is available in both English and Spanish. To obtain the brochure, or for more information, call (800) 729-6686 (V/Relay) or on the web at www.ncadi.samhsa.gov.

Events/Announcements

May 12th - Chronic Fatigue Syndrome International Awareness Day
Submitted by Deborah Ullenberg

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

Medicaid Survey
From www.TheDesk.info

We are looking for stories from people with cognitive disabilities and family members about how they have used Medicaid to increase their independence. We will collect written and recorded stories for use on www.theDesk.info, the only website that explains Medicaid for people with cognitive disabilities. If we use your story, you will receive a free T-Shirt and $50. If you have a story send an email message to stories@thedesk.info or call toll-free at 1-877-431-8532. If you know someone else who has a story, forward this message to them or tell them about it. We are especially interested in stories from Hispanic families, for presentation in Spanish.

The Medicaid Reference Desk is an online resource at www.TheDesk.info that explains Medicaid in basic terms, state by state. It gives people with cognitive disabilities, family members and advocates information about what is available through their State Medicaid Plans and waivers.

** P L E A S E N O T E **
You may now 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).

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.

IndependenceFirst
The Resource for People with Disabilities…

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