The Roving Activist’s Blog

It’s about that time again — the time that Jerry Lewis and his MDA Telethon invades our TV sets with their stomach-turning pity party exploiting people with disabilities. You would think that as many times as he and his PityThon has been crashed and protested by Disability Rights activists (including some ex-MDA poster folks) that he would get the picture, but he continues to cling to the outdated view of people with disabilities as objects of pity and exploitation. He continues to use his telethon to perpetrate the false notion that people with disabilities are hopeless, pathetic creatures who are not fully human.

The pity pot, charity model of giving must go! It’s tired, outdated, and perpetuates all of the negative stereotype of people with disabilities. If you think that there is nothing that you can do, think again! You can write a letter to the TV station in your town that airs the MDA telethon to remove it from the air. You can write a Letter To The Editor of your local newspaper speaking out against it. If you have a blog, or website, speak out against the telethon on your blog or site. Finally, you can do what I love doing best — protesting. Many ADAPT folks, and members of other Disability Rights groups have found out where in their city the telethon was being held, or what TV station was airing it, and picketed outside the venue, or even managed to disrupt the proceedings! Through the years, I have done ten to twenty actions against Jerry Lewis and his telethon. One of the coolest slaps in Jerry’s face, in my opinion, was back in 2003. His telethon had come to Philadelphia with the usual nauseating drivel, and got lots of media coverage. Less than 24 hours later, over 200 people with disabilities marched from Philadelphia to Washington, DC ro bring awareness of the legislation formerly know as MiCASSA. We, too, got lots of media coverage, and the contrast between the pathetic creatures that Jerry Lweis portrays us as, and the powerful and strong activists who were embarking on this historic March was brought up over and over again. I was one of those marchers, and proud that WE, not Jerry, had the last word.

So, get out there folks, and say NO to Jerry and his PityThon! Do it not only over this weekend, but every day. Do it by getting out there, and living your life the way you see fit. Do it by living, and learning, working, and loving, and writing and voting, and being out and about and visible in your community. Every person with a disability who lives life to its fullest, realizes his or her potential, and gets up, and stands up for their rights, is a slap in the face of Jerry. One day, we shall overcome, and be free of the stereotypes!

I rarely ask for help with a project, but now I’m going to. As many of you know, I have been asked by the editor of the Empty Closet, our local GLBT newspaper, to be a regular columnist. I only have to submit a photo, and the name of the column to get set up. Unfortunately for me, naming things is not my forte, so I am asking you, my Gentle Readers, to help me come up with a suitable name for the column. Send me your ideas for a name, and I’ll pick the best one. If your name is chosen, I will credit you in my first column!

The column will be a look into ordinary life from my perspective as a Lesbian Disability Rights activist, and Woman of Color. While the column is serious, there will also be an element of light-heartedness and humor.

So, send in those names via the Comment section, and may the best name win!

Yesterday evening, August 23rd, RGRTA, our local transit authority, had a Customer Town Hall meeting. CEO Mark Aesch began the meeting with his usual rah-rah and tales of fancy. It’s amazing that he always starts these meetings out telling the same concoction of lies, half-truths, and spin. He forever talks of programs involving technologies that won’t be available until about 2010, or later, yet, he talks as if they’ll be rolling out in a couple of months.

The usual assortment of Rochester ADAPT, CDR, and RCIL folks were on hand, as well as some new folks from our group, and some seniors and folks with disabilities from around the Rochester region. Of course, the majority of people wanted to speak about Lift Line, and the extreme fares for those who live or do business in the expanded service area. Mark kept saying that there were those in the disability community and the media who are spreading misinformation and confusion. Oddly, when pressed about what misinformation was spread, he could not come up with a single incident of misinformation. It was obvious that he was trying to slam CDR without coming right out and doing so, but he would have had hell to pay had he done so. He also blamed the disability community for not raising money for the HONOR Foundation, a fund that RGRTA set up in order to offset the high cost of Lift Line rides. I found it amusing (NOT!!!) that he tries to portray people with disabilities as bums wanting a handout when talking with the media, but tries to come off all sympathetic when speaking to us face to face. Whether Mark realizes it or not, we are not fooled by his two-faced, slimey, oily, charming behavior. We know him for the snake in the grass that he is. I feel that his soul is as black and as cold as outer space, and that there is a black hole where his heart should be.

Mark has a habit of trying to avoid questions from ADAPT members, and will often make us wait until the very end of the meeting to get around to our questions. I swear that he is trying to wear us down, and make us give up on getting our questions in. Sometimes, that, in fact, does happen; either the person is exhausted from raising his or her hand all that long time, or the person must leave because their Lift Line ride has come. Rasheem, an Independent Living specialist with RCIL, got lucky because Mark had never seen him before, and managed to ask several good and pointed questions about Lift Line services, the high expansion service area fares, and if there was so much extra funding, why was the cost being taken out on the backs of the poorest people? I am positive that Mark won’t forgert Rasheem! 

Several othr people who were not with our group asked similar questions, or made statements against the fare increase for the expanded service area, which goes into effect September 4th.

One question that I asked was this: Does RGRTA have a policy of blaming people who use wheelchairs for late buses and people missing their connections? I asked the question because of an incident that happened to me on August 8th. At 10:29 am, I called the customer service line to ask about bus schedules so that I could get to a doctor’s appointment later that afternoon. Dan, the gentleman who took the call, advised me to take an earlier bus than I had originally planned because, “one wheelchair, and you’ll miss your connection.” I informed Dan that I used a wheelchair, and sarcastically thanked him for his disrespect of people who use wheelchairs. He tried to make excuses and explanations, but I immediately reported him.

Mark Aesch’s response to my question was to laugh, and say, “no, we don’t have such a policy.” He then went on to say that perhaps, Dan was trying to be helpful. I was incredulous, and asked if he, Mark, thought that Dan was being helpful by effectively blaming all people who use wheelchairs for the tardiness of buses, and wondered aloud how many other people he’d imparted his sage advice to. I went on to tell him that I have repeatedly timed myself when getting on a bus, and found that it takes me less than 30 seconds to get on the bus, and into the securement area. Mark’s response was his mantra for the evening that he spouted whenevr someone complained about rude bus drivers and other staff: “We hire from the human race, and people sometimes have bad days.” Unlike others in the audience, I challenged Mark on this, saying that I could understand if the problems that people with disabilities experienced were the exception, rather than the rule, but unfortunately, these incidents happen far too often to be isolared incidents of people having a bad day. I reminded Mark that I have repeatedly spoken to him in these types of meetings and elsewhere, regarding the culture of disdain and disrespect for people with disabilities that permeates the entire agency, starting at the top. I asked him, “How are you going to address this?” “What are you going to do about this?” As expected, Mark had no answer.

After only two more questions, Mark ended the meeting, remarking that he had nineteen pages of notes. I’m sure those nineteen pages will go into the circular file, or into some forgotten corner of his desk drawer, since I have, to date, not seen any changes in RGRTA’s policies or practices, especially as it relates to customers with disabilities.

One item of interest was a gentleman who remarked that he noticed that the buses were cleaner. I wondered aloud whether he used the buses in the city or the suburbs, because all of the buses that I ride are filthy and smelly. I tell you, Mark practically creamed his jeans in ecstacy, and gushed all kinds of mushy and self-congratulatory platitudes to this gentleman and the audience. Mark, and Bruce Philpott, who runs the bus stuff, were later heard to say that they were going to give the guy a free all day pass for his positive statement, since he was the only one who wasn’t slamming RGRTA. Hmmm. I could spout all kinds of catty, snide, and nasy remarks, but I’ll hold my tongue for now.

As I left, I stopped to speak to Rick, a supervisor in Bus Operations. He is one of the few, indeed, the only staff at RGRTA with whom I have a good relationship. He doesn’t tolerate his drivers disrespecting any customer, including customers with disabilities. It was he whom I was alluding to when I stated publicly at the meeting that there was a few nice bus drivers, and one shining light at RGRTA. Of course, I didn’t get a fee pass for my positive remarks, but I don’t care, since I’m no cheap date, and It’ll take a complete culture and policy change, starting with the replacement of the entire Board of Commissioners, as well as upper and mid-level management. If that leads to a climate of true cooperation and respect for people with disabilities, that will be thanks and reward enough for me, and I will be the first to sing the praises of RGRTA. Until then, the battle continues…

Governor Spitzer Signs Legislation Increasing Rights for The Disabled

Governor Eliot Spitzer today announced that he has signed legislation significantly expanding the avenues for people with disabilities to assert their rights.  The new law will make it far easier for disabled New Yorkers to seek relief when public facilities fail to reasonably accommodate their disability.

“It is critical that the state provide individuals with disabilities full and equal opportunities,” said Governor Spitzer. “This law takes a significant step towards a New York that removes barriers to the full enjoyment of the rights of all of its citizens.”

Specifically, the new statute would make it a discriminatory practice under New York law for places of public accommodation to:

-        Refuse to make reasonable modifications in policies, practices, or procedures necessary to afford facilities, privileges, advantages or accommodations to individuals with disabilities, unless making such modifications would fundamentally alter the nature of the facilities, privileges, advantages or accommodations;

-        Refuse to take steps necessary to ensure that no individual with a disability is excluded or denied services because of the absence of auxiliary aids and services, unless taking such steps would fundamentally alter the nature of the facility or would result in an undue burden; or

-        Refuse to remove structural architectural or communication barriers in existing facilities, and transportation barriers in existing vehicles and rail passenger cars, where removal is readily achievable.

These principles bring New York State law in alignment with the federal Americans with Disabilities Act, and thus will not present businesses or government agencies with a new or unfamiliar set of rules to follow.  

The new law will allow persons with disabilities the ability to file certain complaints related to discriminatory practices through the State Division of Human Rights rather than pursuing costly litigation in federal court.  Individuals can bring their complaints at one of the numerous DHR centers around the State.  If the Division finds probable cause of a violation, a lawyer will present the complainant’s case.  In addition, the Division itself can bring affirmative investigations and initiate complaints.

Senator Steve Saland, Senate sponsor of the legislation, said: “New York State has led the nation for many years in ensuring that accommodations are made for people with disabilities. It is vitally important for the State to continue this commitment to assure adequate protection against discrimination on the basis of disability.  By putting the federal requirements in state law, we are greatly enhancing the availability of state enforcement mechanisms through the Human Rights Law.”

Assemblywoman Amy Paulin, Assembly sponsor of the legislation and former Chair of the Assembly Task Force on People with Disabilities, said: “I am absolutely thrilled, after at least ten years of intense advocacy from New York’s disability community, that Governor Spitzer has signed this measure into law. People with disabilities need to be assured that their civil rights are well protected in this state.  This measure will go a long way toward both preventing and, hopefully eliminating, discrimination against people with disabilities when they choose to utilize areas of public accommodations in New York, regardless of what happens to the ADA on the federal level.   I look forward to working with the Governor to ensure that all existing protections offered under the ADA are put into state law as well.”

Sim Goldman of Disability Advocates said: “We are pleased that New York has clarified and strengthened the legal rights of New Yorkers with disabilities under State law.  We thank the Assembly, the Senate and the Governor for their collective efforts in enacting this law, as well as our fellow advocates who have worked tirelessly for years to achieve this goal.”

Frank Pennisi, the Chair of the ADA Committee of New York State, said:  “With the enactment of this law, Governor Spitzer has shown his commitment to true equality for all New Yorkers.  This bill will make it possible for individuals to assert their right to access to public facilities, and to make those rights guaranteed them by law a reality.”

The legislation will go into effect in January 1, 2008.

My friends in Salt Lake City are among the people who spoke out against this new rule.

Medicaid Rule Change Means Outdoor-designed Wheelchairs May Not Be
Covered

By Kirsten Stewart

The Salt Lake Tribune

Wheelchairs designed for use outside the home will no longer be covered by Medicaid under a rule change that disabled-rights advocates say is misguided, and one occupational therapist likened to placing hundreds of Utahans on house arrest.

Utah health officials say the rule simply codifies existing practice. For more than a decade, Medicaid has paid only for manual and motorized wheelchairs deemed medically necessary and designed for use in the home, said Medicaid budget supervisor Don Hawley.

“Just because the design is for the home doesn’t mean it won’t be suitable for outside,” said Hawley. “But we’re not going to pay for someone to have knobby sports tires.”
 
Advocates fear, however, the rule will be taken too literally by front-line claims workers and used to deny benefits. “In the home” is a Medicare term that has been misinterpreted and expanded over the years, said Matt Knotts, director of the Disability Law Center. “A disability doesn’t stop at the door.” Jerry Costley, with the Disability Rights Action Committee, finds the rule offensive, saying “the message it sends is very much one of segregation.”

Matt Lowell, a physical therapist at Shriner’s Hospital, said he has worked with patients who might be able to get around in the home with a walker, but need a wheelchair to go to work, grocery shopping or church.

“This is like placing disabled people on house arrest,” said Lowell. Lowell was among a dozen people to protest the “in the home” provision at a hearing Wednesday. The rule also seeks to stop Medicaid payment for prosthetic limbs with special shoes and post-chemotherapy wigs and hair replacements.

Fewer than 1,000 beneficiaries would be affected, said Hawley. By comparison, the temporary loss of dental and vision care in previous years touched tens of thousands of people.

Hawley said the goal isn’t to save money, but to guard against overspending and fraud. About $13 million of Medicaid’s $7 billion budget was spent on medical devices in 2006.

What is affected

* Wheelchairs specifically designed for use outside the home

* Prosthetic limbs with special shoes

* Post-chemotherapy wigs and hair replacements

Come Join Us!

Road to Freedom Bus Tour

When:   September 4, 2007
Time:    10:00 AM – 3:00 PM
Where:  497 State Street
              Rochester, NY

Hosted by the Center for Disability Rights and Regional Center for Independent Living

National Disability leaders are visiting Rochester as part of their year-long tour across the nation to restore the intent and power of the Americans with Disabilities Act!

Activities to include:

11:00 Press Conference with Mayor Robert Duffy

12:00 Community Meeting regarding the ADA

Photographic, narrative and multimedia displays of the history of the disability rights movement

Visit the Road to Freedom Website: www.roadtofreedom.org

For more information about this event, please contact: Terrie Lincoln at (585) 442-6470.

Location is wheelchair accessible and sign language interpreters will be provided.

SSAN Action Alert

August 21, 2007

Community Choice Act

ISSUE:

U.S. Senator Tom Harkin (D-IA) and House of Representative member Danny Davis (D-IL) have introduced the Community Choice Act of 2007 (S.799/H.R.1621). Formerly known as MiCASSA, this legislation would increase access to community-based services and other supports for Americans with disabilities and older Americans. The Community Choice Act of 2007 is being co-sponsored by Senator Arlen Specter (R-PA) and Rep. John Shimkus (R-IL).

The Community Choice Act builds on the Money Follows the Person initiative, paving a way to Real Choice in long term care. The bill will allow people who are eligible for nursing homes or other Medicaid-funded institutions to have the choice of living in the community through various services and supports. The legislation also provides enhanced federal matching funds to help states develop their long term care infrastructure and grant funds to help states increase their ability to provide home and community-based services. Finally, this bill creates a demonstration project to evaluate service coordination and cost sharing approaches for those eligible for both Medicaid and Medicare services.

ACTION:

Both NY Senators Hillary Clinton and Charles Schumer have signed on as co-sponsors of the Community Choice Act of 2007.

As of August 21, 2007, Representative James Walsh is the only New York Congressperson signed on! Congress is heading home for the month of August. Now is the time to urge our Congressional Representatives to support Senator Tom Harkin’s Community Choice Act of 2007. We need the rest of New York’s delegation to understand the importance of this issue and become co-sponsors of the Community Choice Act! Urge your Congressional Representative to sign on!

Use the Center for Disability Rights’ advocacy website to take
action:

• Go to this link: http://capwiz.com/rochestercdr/issues/alert/?alertid=10155901&type=CO&show_alert=1

• Type in your name and e-mail and mailing address.

• Click on “send message.” You can send the message as is or enhance the letter by inserting additional text after the second paragraph. Include personal stories or share any facts you may know about the issue.

ADDITIONAL INFORMATION:

Original Sponsor:
• Danny Davis (D-IL)

Current co-sponsor Total: 27 (last sponsor added 08/02/2007)
• 19 Democrats
• 8 Republicans

RA’s Note: Please respond to this Action Alert, even if you don’t live in New York. As you can see from the numbers, many more members of Congress and the Senate mst see the importance of the Community Choice Act and sign on!

This Democrat and Chronicle article is part of an ongoing education effort by Linda Fullerton, co-founder of the SSD Coalition. She feels that it is very important that people know just what those of us with disabilities who try to get on Social Security must go through.

Backlog leaves disabled in limbo

Those seeking Social Security benefits often wait years for OK

Erica Bryant
Staff writer

(August 21, 2007) — John Johnson left the U.S. Army with such physical and mental scars, the U.S. Department of Veterans Affairs rated him 100 percent disabled in 2003.

But it took nearly four years for the Persian Gulf War veteran from Rochester to win approval for and finally receive Social Security Disability Insurance benefits.

About 65 percent of the 2.5 million people who file disability claims each year are initially denied and have the right to appeal. At Social Security’s Buffalo Hearing Office, where Johnson’s case was heard along with most local cases, the average time between a request for an appeals hearing and the hearing is 22 months.

Nationally, the average wait is 17 months, the longest in Social Security history.

“The process is horrifying,” said Johnson, whose SSDI benefits started last month.

Social Security Administration Commissioner Michael Astrue has blamed understaffing and an increase in claims for the backlog.

When he addressed the Senate Finance Committee in May, he lamented the fact that Congress has provided the SSA with an annual average of $150 million less than what has been requested by President Bush since 2001.

Meanwhile, the disability hearings backlog has doubled to more than 745,000 cases.

“The length of time many people wait for their final disability decision is unacceptable,” Astrue told the Senate Committee.

As of the end of July, 14,707 cases were waiting for an appeals hearing at the Buffalo office. Close to 8,000 had been pending for more than a year. There are currently 13 judges working out of the Buffalo office. Social Security Administration spokesman John Shallman says that an additional administrative law judge should be added there in October.

As a veteran, Johnson was able to appeal to his congressional representatives to get his case pushed along faster.

Service in the first Persian Gulf War and a blow to the head he received while stationed in Korea left him suffering with post-traumatic stress disorder, a traumatic brain injury, degenerative disc disease and other ailments.

When Johnson applied for SSDI in 2003, he was denied. Because of the massive backlog at the Buffalo hearing office, he did not get his first appeals hearing until July 2006.

During his four-year wait, Johnson had Veterans Affairs benefits to help him manage. Terry Nichols, a Greece resident who was diagnosed with multiple sclerosis in 2002, did not.

Nichols applied for Social Security disability benefits in November 2002, after blurry vision, debilitating fatigue, persistent pains and cognitive issues made it impossible for him to keep his lawn maintenance business.

After an initial denial, he waited 18 months for a hearing. In May 2004, he received a favorable decision.

By that time, his house was already in foreclosure. He lost the home in June 2004.

“You pay into the system and you always believe there’s a safety net there for you when something like this happens,” he said.

“Then you find out it’s not there to catch you.”

Crunch to worsen

The Social Security Administration is experimenting with new efforts to speed up proceedings. It is using automation tools to screen cases and has been prioritizing cases that are or will be 1,000 days old as of Sept. 30. Astrue requested $10.44 billion for the Social Security disability system for the 2008 budget cycle. President Bush has proposed $9.4 billion and the Senate has budgeted $125 million more than that, specifically to address the backlog. The final figure will be decided later this year.

As baby boomers age and become more prone to disability, Astrue expects the crunch to worsen. He has estimated that the number of pending cases could reach 1 million by 2010.

In 1996, Linda Fullerton of Rochester bumped her head while getting out of her car. A blood clot that formed between her scalp and skull became infected, leaving her in a coma. In the aftermath of the accident, she had to have the base of her skull removed and developed several autoimmune disorders. By 2001, she could no longer work as a computer purchasing agent and filed for SSDI benefits.

She was initially denied and waited a year and a half for an appeals hearing before she started receiving benefits. In 2003, she co-founded the Social Security Disability Coalition to push Congress to reform the system and to help get other people through the appeals process.

“Most Americans can’t live for two weeks without money,” said Fullerton, who says she lost her pension and life’s savings waiting for her disability benefits. “They’re asking people who are sick and can’t work to wait 700 days? It’s insane.”

‘Ready to give up’

Johnson sought help from Fullerton’s organization when he was left stunned that he could be denied Social Security disability benefits, despite the fact that the V.A. had declared him 100 percent unemployable. “I was ready to give up,” he said.

Social Security and the V.A. are separate federal organizations and use different criteria to determine disability, explained Rick Warsinskey, the president of the National Council of Social Security Management Association.

There is no system in place to spare a veteran who has been declared disabled by the V.A. the long wait for Social Security. “It’s unfortunate,” he said.

“It was stressful, painful and humiliating,” said Johnson, who is trying to get his house out of foreclosure. “I worked. It’s not like you’re giving me anything for free.”

Nichols said one of the worst parts of applying for Social Security disability benefits was being treated like he was trying to scam the system.

He said he recognizes that some people try to get disability insurance benefits that they don’t deserve, but he said making people wait years before they get the opportunity to appeal a decision is wrong.

“There should be something in place to protect people from losing everything they’ve worked for,” Nichols said.

“It just shouldn’t take that long.”

EBRYANT@DemocratandChronicle.com

Here is a link to Linda Fullerton’s story, and what she is doing. Linda’s website is called A Bump On The Head.

http://www.frontiernet.net/~lindaf1/bump.html

It is official tomorrow, August 20, 2007 — I will be leaving my position as Systems Advocate at the Regional Center for Independent Living to accept a position as Systems Advocate with the Center for Disability Rights. Whats cool about this is, I don’t have to change a thing! I’ll still be at my same desk, and you can reach me at the same number. If you e-mail me at the old e-mail address, I’ll still get it. Cool, eh? Of course, I’ll have new business cards, and all of my paperwork will be from CDR, but other than that, everything stays the same.

Actually, the transfer went through on August 6th, at least, on paper. Tomorrow, however, is the first day of work for Terrie Lincoln, RCIL’s new Systems Advocate. I’ll still be doing the monthly SSAN reports for RCIL until Terrie is trained. So, welcome, Terrie! I know that you will be a great asset to RCIL!

This Thursday, August 23rd, I will be meeting with the Executive Director of the Gay Alliance of the Genesee Valley to discuss how we can build bridges between the GLBT community and the disability community. We’ll be meeting at CDR, and there will be lots to discuss. I am looking forward to this meeting because I believe that our communities should join forces and work together. I will keep you abreast of what happens.