Print Friendly VersionNovember 2007, Issue 119
ADVOCACY ACTION NEWS
November 2007, Issue 119
Monthly News Bulletin Published by IndependenceFirst
FEDERAL/NATIONAL
STATE
LOCAL
RESOURCES ON THE WEB
ANNOUNCEMENTS
“THE TAO OF ED”
[NOTE: Ed Roberts is known as the “Father of Independent Living.” We are sharing some of his thoughts over several issues of AAN. This is installment #3.]
I don’t have to tell you, or anybody else, about disability and weakness. I want to talk to you about strength. I want to talk to you about what people can do when they’re motivated and when they’re clear about who they are.
I’ve become a very strong person over the years, not only because of life in general but because I have a disability.
It forced me to do things and learn things that many young people never have to learn. I have come to terms with death, for instance. I’m not afraid of that. And I learned about the staring thing that it’s totally their problem. I’m not going to internalize that and feel bad about how I am. I learned, too, that when people look at me as so different that they want to feel pity, I can probably get anything I want out of them. I can manipulate the hell out of them.
While they see me as weak and unable – well, I’m not. I can come on strong and capable when they’re staring at my wheelchair and my respirator and feeling entirely sorry for me. I can use that, tactically. It’s a very powerful tool and it’s something we should teach people to use in practical ways.
You see a lot of people who take that role as part of their whole life. That’s a whole different thing. When you use that sick role all the time, it’s toxic.
My mother, Zona Roberts, was probably the most important person in my life. She would believe in me. Together we had to learn to fight [discrimination] because there were so many people with their little narrow rule books who were always willing to say ‘no.’
One of our first struggles was to get me a high school diploma. This school guy came out to our house to tell me that I couldn’t graduate because I didn’t have driver training and phys ed. But I was the number two student in school!
The guy looked right at me and said: ‘You wouldn’t want a cheap diploma, would you?’ Feeling so humiliated, working so hard and feeling like I’d earned it, at the same time both my mom and I feeling like we wanted to kill the guy…
So first we threw the guy out of the house. Then Mom and I said, ‘How can we change this decision?’ We went to the school board. It was very important for me and my mother, fighting together. It was a landmark for me. I don’t think I could have done that alone, at all. Both of us were terrified. Oh boy, were we afraid – not that we’d lose, but it is scary going up against authority. It is! It takes a lot to be able to do that.
There was no question, though, once they heard. They gave me my diploma.
I learned from that fight. You don’t let people walk all over you. You fight for what you believe is right. The fight for my diploma taught me that. That is the model I’ve followed ever since.
SOURCE: Mouth Magazine
FEDERAL/NATIONAL
The NCIL Healthcare Subcommittee Needs to Hear from You!
The Center for Medicare and Medicaid (CMS) is implementing changes to the Durable Medical Equipment (DME) regulations. The National Council on Independent Living (NCIL) would like to hear from you, the consumer, regarding changes in obtaining wheelchairs and other needed medical devices. Send your stories to Elizabeth Leef, NCIL Healthcare Policy Analyst, at Elizabeth@ncil.org.
Consumer Complaint Campaign: People with Disabilities Fed Up With Poorly Designed Phones
Over the past several months, the American Association for Persons with Disabilities (AAPD) and several other national disability organizations, have been assisting consumers with disabilities with their complaints about phones that are not accessible or usable. These complaints are from persons with vision loss, physical disabilities, hearing loss, and in several cases multiple disabilities. Several of the complaints involve aging boomers who expect the same usability they used to have when younger. Complaints include: lack of access to the information on the cell phone screen (such as not being able to navigate through the menus or being able to enter caller information from the keypad); lack of hearing aid compatibility; keypad buttons that are too small or keypads with no indicators; missing calls because the ring tone and vibrate function cannot be turned on simultaneously; customer service reps ignoring disability concerns; bills and product materials unavailable in alternate formats; and other barriers to making and receiving calls like everyone else.
AAPD will continue to assist consumers with informal complaints involving cell and other phones. Please contact Jenifer Simpson, AAPD staffer, if you have just such a concern. Alternatively you can file your complaint directly at the FCC using their online Form 475 at http://fjallfoss.fcc.gov/cib/fcc475.cfm
Jenifer's Email is aapdjenifer@aol.com. Put "phone complaint" in the subject line for faster handling.
SOURCE: AAPD
Funds for Housing
The House recently passed The National Affordable Housing Trust Fund Act of 2007, H.R. 2895, to establish a national affordable housing trust fund to build or preserve 1.5 million homes or apartments over the next 10 years, without increasing government spending or the federal deficit. The bill will initially allocate between $800 million and $1 billion annually directly to states and local communities, targeting funds for the construction of affordable housing and for lower income families facing the greatest housing affordability challenges.
STATE
Budget Impasse
As we go to print, the state budget has still not been approved by the state legislature. This could have serious implications for Wisconsin’s citizens. We here at IndependenceFirst are hoping for a expeditious resolution to the budget impasse. Call us if you have questions on how the impasse may affect you!
LOCAL
Make It Work Milwaukee Transportation Rally
By Autumn Manz
On September 26th, Make It Work Milwaukee (MIWM), held a rally to advocate against the proposed transportation cuts and fare increases in the Milwaukee County Executive’s proposed 2008 budget. The rally was held at the Milwaukee County Courthouse in front of the County Executive’s office. IndependenceFirst took the lead and was involved along with many other organizations. Make It Work Milwaukee is a coalition composed of over thirty organizations and groups that are dedicated to strengthening health and human services in Milwaukee County.
Although advocacy efforts decreased the severity of transportation cuts proposed in the County Executive’s Budget, the fare increases as well as bus service cuts are still significant. In the original proposed budget, paratransit services for people with disabilities were threatened. The countywide service area was going to be cut to the federal minimum, which meant that service would only be within three-fourths of a mile of a bus route. This would have left many people with disabilities without any transportation. The bus route cuts were also significant. Eleven entire routes were proposed to be eliminated while sixteen others were to be shortened or restructured. On September 24th, the County Executive announced that there would be no cuts in service for paratransit users and no route eliminations for bus riders but that the fare increases would still stand and that there would be some changes to the bus system.
Make It Work Milwaukee members, people with disabilities, older adults and bus riders gathered together to speak up and show support for affordable reliable transportation. People filled the hall in front of the County Executive’s office with colorful signs, proclaiming “We Must Ride.” Our main objectives were to rid the County Executive’s Budget of the fare increases. Paratransit riders faced an increase from $3.25 to $4.00 a trip, while bus riders faced an increase from $1.75 to $2.00. The group also protested any cutbacks in the bus system and advocated for a consensus on a dedicated funding source, which would take transportation out of the competition for funding.
The County Executive did not make an appearance but supplied the group with an informational flyer, which restated his proposal. CBS 58, Fox 6 News and Milwaukee Public Radio all covered the rally, broadcasting it to their audiences. Overall, it was a successful event with at least one hundred people attending to show how important affordable and reliable transportation is in Milwaukee County. Although the fare increases and bus service cuts were still in the County Executive’s Budget that was released September 27th, advocates think there is still a good chance that it will not be in the final budget. Make It Work Milwaukee and IndependenceFirst are continuing their work to rid the 2008 budget of any transportation cuts and fare increases.
IndependenceFirst’s
WORK INCENTIVES PLANNING & ASSISTANCE PROJECT
The Ticket to Work and Work Incentives Improvement Act authorizes the Social Security Administration (SSA) to establish a community-based work incentives planning and assistance program. The purpose of this program is to provide accurate information related to work incentives to beneficiaries with disabilities.
The IndependenceFirst WIPA Project is available to individuals receiving Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI) benefits who are interested in becoming employed. Our primary focus is to assist individuals with disabilities with making informed choices about working.
SERVICES PROVIDED
• Information and Referral – Information on Federal and State benefit programs.
• Problem Solving and Advocacy – Assistance with Federal and State benefit and work incentive problems.
• Benefits Analysis and Advisement – An assessment of a beneficiary’s situation and the impact of work on Federal and State benefits.
• Benefits Support Planning – Assistance with developing a long-term plan incorporating the beneficiary’s work goal and available work incentives.
• Benefits Management – Assistance with managing benefits when a beneficiary experiences changes that affect benefits.
For more information about the IndependenceFirst’s Work Incentives Planning & Assistance (WIPA) Project please call 414-291-7520 (V/TTY) or 1-877-463-3778 toll free.
QUOTE OF THE MONTH
“The world is a dangerous place to live;
not because of the people who are evil,
but because of the people who don’t do anything about it.”
~ Albert Einstein
RESOURCES ON THE WEB
Partnering with Your Child's School: A Guide for Parents
The HSC Foundation, in partnership with George Washington University's Graduate School of Education and Human Development, offers a new resource for parents. The booklet available online and in hard copy in English and in Spanish, is designed to help parents of children who have been diagnosed with health or mental health care needs to learn about available resources and to develop a partnership with their children's schools. The booklet's content has been reviewed and validated by groups of parents, youth, and educators and is produced in partnership with the Council for Exceptional Children and the National Association of State Directors of Special Education.
For more information, go to:
http://www.hscfoundation.org/whatwedo/familysupports.php
SOURCE: HSC Foundation
Disability “Etiquette” Info
A good and FREE resource on disability etiquette is available for download at:
http://www.unitedspinal.org/disability-publications-resources/disability-publications/
There is a Spanish version as well.
ANNOUNCEMENTS
Cochlear Implant Alert
Important new information from the Food and Drug Administration on Cochlear Implants. The Food and Drug Administration (FDA) has issued a new Advice for Patients (AFP) on meningitis and cochlear implants to emphasize the importance of vaccination in cochlear implant recipients.
New Information on Meningitis Risk:
• Two cochlear implant patients recently died from infections. Neither patient was fully vaccinated. One of these patients likely died because of the lack of vaccination.
• A survey of parents of cochlear implanted children showed nearly half of them did not know whether their child’s vaccination status was up to date.
The link to the complete information in the AFP is:
http://www.fda.gov/cdrh/medicaldevicesafety/atp/101007-cochlear.html
WANTED! Advocates to join our Consumer Advocacy Teams and/or the Advocacy Subcommittee of our Board of Directors. If interested, please contact Deb Langham or Karen Avery at 414-291-7520 (v/tty). Remember, “You must be the change you wish to see in the world!”
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 Karen at 414-291-7520 (V/TTY) or kavery@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 Karen at 414-291-7520 (V/TTY).
IndependenceFirst
The Resource for People with Disabilities…
600 W. Virginia Street, 4th Floor
Milwaukee, WI 53204
414-291-7520 (V/TTY)
414-291-7525 (FAX)
www.independencefirst.org