Print Friendly VersionADVOCACY ACTION NEWS
October 2007, Issue 118
FEDERAL/NATIONAL
LOCAL
ANNOUNCEMENTS
Monthly News Bulletin Published by IndependenceFirst
[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 #2.]
“THE TAO OF ED”
The doctor told my mother, ‘Well, maybe you should hope he dies, because if he lives he’ll be nothing but a vegetable.” To have a doctor say it’s better that he should die than live as a cripple – well, he doesn’t know!
True: early in my rehabilitation days, I think I was trying to kill myself – by not eating. It wasn’t a conscious effort, and the anorexia may actually have been a result of the disease. But the day they took my last special-duty nurse away, I started to eat again. Talk about symbolism! All of a sudden I was on my own, and I had to make my own choices. Again, I chose life. Still… I stayed inside for five years. I was terrified that if I went out, people would stare at me. I wanted to die.
You’re 14 and you’re paralyzed from the neck down and you’re in an iron lung – you have all these people around you, doctors and nurses, and their job is to save life. You have to be pretty creative to commit suicide. But I was just totally depressed and not knowing what the hell my life was going to be all about.
Don Galloway, manager of blind services, and Ed Roberts, executive director of the fledgling Center for Independent Living, in1974, on the Berkeley campus.I had totally accepted the whole idea that being crippled was terrible, the worst thing.I remember being on my father’s shoulders, at the State Fair or something, when I saw a woman in a wheelchair who had cerebral palsy. She was just moving about in her chair, and I was fascinated by this person. I’d never seen anybody like that. I was really looking, and all of a sudden my father reached up and yanked me back and said, ‘Don’t stare! I thought, ‘Well, my God, if you can’t even look at it, what must it be?
Something really to be afraid of! It’s terrible!’ But she was fascinating! She was different! After the polio, I didn’t want to go out. I went to high school by radio/telephone. I was terrified that people would stare at me; I didn’t like myself very much. As I said, I accepted all those old stereotypes. A swift kick in the butt – I believe in that. We’re too gentle sometimes. We don’t teach people to take risks; people have to learn how to take risks. Whether we’re young or old, that’s the only way we can learn, by taking that next step, that risk. My mother came to me and said, ‘If you don’t begin to get out of here, you’re going to be here the rest of your life!’ She said, ‘I want my life, too.’
Nothing cruel, just a kick in the butt. So I decided I’d physically attend the high school. They got me in the car, and drove me to this courtyard where about 200 students were I went, ‘Oh, no!’ That feeling… and everyone turned to stare at me. When I’d look up at them, they’d look away. Here I was, sitting in the middle of my worst fear! And something remarkable occurred to me: It didn’t hurt! It didn’t hurt for people to stare at me. Then I thought, ‘Whoa, this is kind of like being a star! Hey, it’s not so bad. Then I also thought, ‘Hmmm, you know something?
I have a choice here. I can decide it’s because I’m ugly, or I can decide, I’m a star! I’m different.’ I could enjoy being stared at. That day was very important to me because that’s the day I realized, ‘Hey, I’m going to separate what’s my problem from what’s somebody else’s problem.’ Those things happened to me all through my life, the ‘Aha!’ moments. Why do we build self-hatred around this stuff, and actually be the people, become the people, who put us down? Today I try to teach that you make choices about how you feel – whether people stare at you or not.Misery is optional.
SOURCE: Mouth Magazine
OCTOBER MARKS NATIONAL DISABILITY EMPLOYMENT MONTH
Congress designated each October as National Disability Employment Awareness Month (NDEAM). The Office of Disability Employment Policy within the US Department of Labor has the lead in planning NDEAM activities and materials to increase the public's awareness of the contributions and skills of American workers with disabilities.
FEDERAL/NATIONAL
TAMPER-PROOF PRESCRIPTIONS FOR MEDICAID PATIENTS
As of October 1, 2007, a provision tucked in a spending bill for the Iraq war requires that prescriptions for Medicaid patients be written on "tamper-resistant" pads. The law is designed to make it harder for patients to illegally obtain controlled drugs and easier for the government to save money. The tamper-resistant pads often contain a chemical that reveals when efforts have been made to alter the paper. For example, the heat from a copier may cause the word void to appear. Sometimes, the pads contain serial numbers that are entered into a computer by the pharmacist so that they can be matched against a doctor's order. Medicaid is the federal-state partnership that provides health coverage to about 55 million poor people.
President Bush had recommended the requirement for tamper-proof prescription pads in his 2008 budget. The Congressional Budget Office projected that the requirement would save taxpayers $355 million over the coming decade, mainly through preventing fraudulent prescriptions. In response to concerns by advocates and lawmakers, the Centers for Medicare and Medicaid Services (CMS) released a State Medicaid Director letter regarding the use of tamper-resistant prescription drug pads to reduce instances of unauthorized, improperly altered, and counterfeit prescriptions. The letter defines the characteristics of a tamper-resistant prescription pad:
• One or more industry-recognized features designed to prevent unauthorized copying of a
completed or blank prescription form;
• One or more industry-recognized features designed to prevent the erasure or modification of
information written on the prescription by the prescriber
• One or more industry-recognized features designed to prevent the use of counterfeit
prescription forms. To meet the definition, prescription pads must contain at least one of these
characteristics by October 1, 2007 and all of these characteristics by October 1, 2008. The
State Medicaid Director letter also clarifies the application of the new statutory provision. The
limitation on payment and the requirement for the use of tamper-resistant prescription pads
does not apply to:
• Drugs provided in nursing facilities, intermediate care facilities for the mentally retarded (ICF-
MRs), institutions for mental disease, and other specified institutional and clinical settings;
• Prescriptions in managed care settings when the managed care entity pays for the prescription
• Electronic prescriptions transmitted to the pharmacy,
• Prescriptions faxed to the pharmacy, or
• Prescriptions communicated to the pharmacy by telephone by a prescriber.
Further, the State Medicaid Director letter clarifies that the guidance does not restrict emergency fills of non-controlled or controlled dangerous substances for which a prescriber provides the pharmacy with a verbal, faxed, electronic, or compliant written prescription within 72 hours after the date on which the prescription was filled.
COAT MEMBERS URGE ACTION BY WIRELESS INDUSTRY TO IMPROVE DISABILITY ACCESSIBILITY
Persons with disabilities are taking their concerns about lack of accessibility of cell phones to the Federal Communications Commission (FCC) this month, with multiple complaints against numerous companies submitted by representatives of the Coalition of Organizations for Accessible Technology (COAT). The FCC is the federal agency that enforces Section 255, an eleven-year-old law that requires phones designed to be accessible for people with disabilities. Complaints are filed against both cell phone carriers and manufacturers.
The complaints from consumers with disabilities include:
• Cell phones not providing for audio output of information displayed on the screen for users with
vision disabilities;
• Cell phones not built for compatibility with hearing aids;
• Visual displays difficult or impossible to navigate for persons with fine motor disabilities;
• No easily-found disability 'point of contact' at the company as required by FCC regulations;
• Number and control keys hard to distinguish by touch;
• Product manuals not available, and not available in alternate formats such as Braille or large print;
• No easy-to-find descriptions of accessibility features;
• Phone bills and customer contracts not available in Braille, large print, or other easily readable
formats; and
• Customer service personnel ill-equipped to handle concerns of consumers with disabilities.
COAT is a new coalition of disability organizations, launched in March 2007, to advocate for legislative and regulatory safeguards that will ensure full access by people with disabilities to evolving high speed broadband, wireless and other Internet protocol (IP) technologies.
The Coalition of Organizations for Accessible Technology, or COAT, consists of over 100 national, regional, and community-based affiliates dedicated to making sure that as the nation migrates from legacy public switched-based telecommunications to more versatile and innovative IP-based and other communication technologies, people with disabilities will benefit like everyone else.
(NOTE: IndependenceFirst is a member of COAT.)
SOURCE: Coalition of Organizations for Accessible Technology
LOCAL
LONG-TERM CARE REFORM INFORMATION FORUMS
Community forums are being held for Milwaukee County residents with disabilities under age 60, and their families/guardians, to discuss proposed changes in the delivery of County-administered long-term support services. Long-term support services include personal care, home delivered meals, respite care, residential options, day and work services, transportation, home modifications and other services that promote independence.
Forums will be held:
TUESDAY, OCTOBER 2nd from 12:30-2:30 PM at Goodwill Industries, 6055 North 91st Street, Milwaukee
(Park in the far west side of the employee lot.)
MONDAY, OCTOBER 22nd from 12:30-2:30 PM at Milwaukee Center for Independence, 2020 West Wells Street, Milwaukee
TUESDAY, OCTOBER 30th from 5:00-7:00 PM at Washington Park Senior Center, 4420 West Vliet Street, Milwaukee
EACH FORUM WILL INCLUDE THE FOLLOWING TOPICS OF DISCUSSION:
• Proposed changes in the delivery of long-term support services
• What these changes could mean for you
• Questions and answers
• Your ideas and opinions about the proposed changes
To request any disability-related accommodations for the forums, please let us know by calling 414-224-0404 (voice/relay). Every effort will be made to support your participation.
Hosted by: Milwaukee County Disabilities Services Division and Milwaukee County Department on Aging.
NOTE: You can also provide input on the “Your Space” page of the Milwaukee County Long-Term Care Planning website (www.planningcouncil.org/longtermcare). Milwaukee County is interested in hearing from adults with disabilities who receive or are waiting to receive long-term care services.
QUOTE OF THE MONTH
“People expected us to fail. That didn’t happen. We became powerful. We stuck together, we worked together, we drew the line of what was unacceptable… All things change when you get political power.”
~ Ed Roberts
ANNOUNCEMENTS
TELL US YOUR STORY!
The University of Pennsylvania Collaborative on Community Integration (www.upennrrtc.org) is seeking stories from parents with mental illnesses regarding their experiences with the child welfare system, child custody issues, barriers to reunification associated with having a mental illness, and custody being used to encourage treatment compliance. Please contact Pam Cousounis pamelac2@mail.med.upenn.edu or at 215-746-1950 if you have a story that you would like to share.
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)
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