JFActivist

AAPD and Friends Remember Fred Fay

 September 12, 1944- August 20, 2011

From AAPD (8.25.2011):

Dear Friends:

By now many of you have received the sad news that Fred Fay passed away this past weekend.   Our movement has lost a fighter, an innovator, and a problem solver.  We have also lost a friend. 

Through the assistive technology he developed or the legislation he championed, Fred changed our lives and our world in tangible ways.  When Fred was invited to the White House in 1964, his wheelchair had to be bumped up the steps because the White House was not accessible.  It is accessible today, and that means more than just being able to attend a signing ceremony or go on a tour.  It means having the opportunity to make our case to the highest levels of government.  We owe this opportunity in no small part to Fred, who fought with equal passion for access to education and employment and who inspired so many people to fight alongside him.
 
It would be impossible to give a complete recitation of Fred’s accomplishments in this letter.   We are posting links to some of the articles that have been published in the past few days.   We’re also pleased to share letters from Yoshiko Dart and Becky Ogle. 

We believe that the best tribute we could pay to Fred is to use Justice for All —which Fred co-founded and loved—as a forum to share our thoughts about Fred’s life and about how to continue our civil rights work together.    Please submit your comments below to join in the conversation about taking this work forward with the same passion that Fred brought to it.

Sincerely,

Mark  Perriello      Helena Berger
President and CEO    Executive Vice President and COO

Related links 
On October 27, PBS will air A Life Worth Living, a film about Fred's life and his role in the Disability Rights Movement, is scheduled to air on PBS on October 27.
http://concord.patch.com/articles/disability-policy-advocate-remembered http://www.wrightslaw.com/nltr/10/al.fred.fay.htm

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From Yoshiko Dart (8.25.2011):

 
Yoshiko Dart remembers Fred Fay:

“I am with you always. I love you. Lead on. Lead on.”

Justin Dart, Jr.

August 22, 2011

Dear Trish, Family, and Friends of Fred Fay:

Please accept our deepest condolences for the recent passing of Fred.  Our thoughts and prayers are with all of you for your peace, comfort and strength to live through this difficult time.  You all did a magnificent job assisting him to live a life of quality to his fullest.  Hats off to you!

Justin and I had the privilege of working closely with Fred for many years on the ADA, Justice For All, political campaigns of/for/by the disability constituency and more.

When Fred received the 1997 Henry Betts Award at the Library of Congress via Satellite, Justin stated,
Congratulations to Fred Fay, one of the greatest human beings I have ever known.  He has been a pioneer of the international movement to liberate the hundreds of millions of people with disabilities from subhuman status.  He has been an outstanding leader in research, philosophy, advocacy and politics.

His every act has communicated the courage to stand for principle, and the profound love for every person that has characterized the truly great moral leaders of history.

He has made monumental contributions to the quality of my life, and to the quality of the lives of millions in present and future generations.

Fred, Yoshiko and I are so proud to be associated with you.  We love you.  Lead On!

The monuments to Fred Fay will live and grow as increased quality of every human life as long as humans exist.

Fred, we love you.  We cannot replace you, but we will multiply our passion and our actions to achieve the golden Dream that we share – the individualized empowerment of all human beings to live their full personal potential.

Beloved family members and friends of Fred, we love you.

FAY FAMILY POWER!  POWER OF FRED’S LOVING AND FIGHTING SPIRIT!  POWER OF DISABILITY PRIDE AND DIGNITY!  POWER OF GLOBAL SOLIDARITY!

Leading On Together No Matter What!

Yoshiko Dart and the family

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From Becky Ogle (8.25.2011):

 
Becky Ogle’s tribute to Fred Fay:

Dr. Fred Fay was many things to many people.  I could write about how proud he was to be a father of a bright and talented son and how proud he was of his wife Trish and her accomplishments as a business owner and wife, but my writing would not do justice to either so I will stick to what I knew best about Fred; his talent, commitment to disability rights and friendship to many.

Fred Fay, like those who left before him; Ed Roberts, Justin Dart, Jr., Mark Smith to name just a few, was a pioneer in every sense of the word.  Fred managed to lead one of the most impressive, productive and meaningful lives all the while being flat out on his back 24-7.  Some people who are upright won’t come close to accomplishing all Fred was able to accomplish flat out on his back.  Granted Fred was fortunate to have Trish and others in his life who supported his goals and desires, but they will be just as quick to dismiss their own contributions and give full credit to Fred.

Fred Fay embodied all that is good and true in life.  Fred was instrumental in mobilizing the grassroots during the ADA, political actions and of course his infamous role in Justice for All.
Fred and I had a limited relationship prior to the creation of JFA, but this changed dramatically once JFA was up and running.  Fred was the Moderator of JFA, which was no small undertaking, especially given the newness of the technology and the end users (me).  Fred had spent many years building his own list of email addresses and it continued to grow it as JFA gained popularity.  Few individuals at this point in time had the technological grasp Fred possessed and we all benefited greatly for his knowledge, because without his participation nothing got posted.

Many days Fred and I spoke as many as a dozen or more times.  Usually our discussion began with my terrorizing Fred and threatening to roll up to MA to beat him senseless for not posting my alerts.  Fred’s responses to my rants were always the same; he laughed.  This incited me more, which only caused Fred to laugh more.  I finally learned that Fred would always come through, but on his own time and not mine or others.  Thankfully Fred’s timing never impeded people receiving alerts in a timely manner. 

Little did I understand how Fred worked his magic during all the years of JFA, but this changed when Fred and I met in October, 1996 during the re-election campaign of Clinton-Gore.  An opportunity presented itself for my being in the general vicinity of Boston for the campaign. I took advantage of it to meet this mystery man behind the voice I heard multiple times on a daily basis.  Knowing a bit about Fred and his background did not prepare me in the least for our actual in person encounter.

Again, it was 1996 and technology was in its’ infancy for many, but not Fred Fay.  Fred had his life wired into three different computers that hung from the ceiling enabling him to see them all at once.  One computer was set-up for work related activity, another controlled his telephone and allowed him to play scrabble with his son and others.  The third mounted computer appeared to give him total control over the surrounding environment allowing full independence.

The real shock for me came when Fred escorted me outside to choose where he wanted to place the Clinton-Gore yard sign I had brought for him.  I had no idea the contraption/bed that held him flat on his back would also motor him out into his yard.  No big deal or so it seemed to the neighbors driving by and waving as we planted the political sign.  Apparently the only one surprised by Fred being outside was yours truly.

I had heard stories about Fred and his legendary relationship with Senators Kennedy and Kerry, and how often Senator Kennedy paid visits to seek out Fred’s advice.  Legend held that Senator Kennedy came to Fred’s house on many occasions to discuss disability policy.  The Senator took his cue from Fred and the assembled group of activists that Fred rounded up.  Fred could have easily kept his visits with Senator Kennedy to just the two of them, but that was not in Fred’s nature.  He invited everyone in the area interested in disability policy to attend every meeting he and the Senator conducted at Fred’s home.  Pretty impressive, but you’d never know it from talking to Fred, because he never boasted or tooted his own horn the entire time I knew him. 

Our community has seen its’ fair share of loss in terms of leaders leaving us way too soon and it is a given that many more will follow.  It is my sincere desire that for those that knew nothing of Fred Fay’s contributions to our community you may have learned more here.  I cannot do justice to all Fred gave, and hope others’ will take it upon themselves’ to add in their own perspective.  The Dr. Fred Fay I got to know was a fine human being, and deserves to be remembered for all he did. 

--Becky Ogle

Health Care Reform: Insurance Available for People with Preexisting Conditions

via AAPD (8.9.11):

Health Care Reform: Insurance Available for People with Preexisting Conditions

By David Heymsfeld, Policy Advisor, AAPD

On August 4th, AAPD participated in a meeting convened by the Department of Health and Human Services to increase awareness of a new program established by the health care reform act (the Affordable Care Act) to make insurance available at reasonable prices to persons who are unable to get insurance to cover preexisting conditions.

Under ACA ,after 2014 health insurance must cover pre-existing conditions. Before 2014, the law requires each State to establish a Preexisting Condition Insurance Program, or to participate in the federal program. The insurance is now available in all States at premiums of about $200 a month for persons under 35, and $400 a month for persons over 50.

The insurance will not be of interest to everyone. Persons on Medicaid and persons who are satisfied with their existing insurance will probably not want to buy PCIP policies. To qualify for PCIP, a person must show that they have been without insurance for 6 months, and that they have a preexisting condition.

Further information on the program and on policies available in particular states may be found at https://www.pcip.gov/

Unemployment Down for General Population, Up for People with Disabilities

via AAPD (8.5.11):
 

 

People with Disabilities Remain Unemployed at Higher Rate than Other Americans

July Stats Show Year-Over-Year Increase in Unemployment for Americans with Disabilities

 

While the unemployment rate for Americans without disabilities dipped slightly in July, the American Association of People with Disabilities (AAPD) decried the disproportionately high unemployment rate for people with disabilities and its increase since July 2010. 

“A 16.8 percent unemployment rate is unacceptable.” says Mark Perriello, President and CEO of the nation’s largest cross-disability advocacy organization. This is a significant increase from July 2010, when we were at 16.4%. This needs to change.”

“More than three quarters of a million people without disabilities have been hired over the last year,” Perriello added. “It’s time for employers to step up to the plate, set some targets, and hire qualified people from our community as well.”

“For a qualified person with a disability who wants to work, who wants to get out there and contribute to her community, to be responsible for herself — we can’t say to that person, no, this country doesn’t value what you have to offer.” said Joyce Bender, AAPD Board Chair and President of Bender Consulting. "We need to open the doors of freedom through competitive employment to all people," she added.

According to the latest information released by the Bureau of Labor Statistics, over 970,000 people with disabilities were unemployed in July 2011, compared to 919,000 last year.  [BLS table at http://www.bls.gov/news.release/empsit.t06.htm]

AAPD has long recognized that employment plays a critical role in economic sufficiency and independence for people with disabilities. The organization is committed to improving employment outcomes for people with disabilities, and reversing the persistently high percentages of people with disabilities who are not working but are ready, willing, and able to work.   

For more on AAPD and employment visit: http://www.aapd.com/site/c.pvI1IkNWJqE/b.5606959/k.6189/Disability_Employment.htm

Priced Out in 2010: Why We Can’t Find Housing

by Julia Feinberg, AAPD Policy Intern (8.4.11):

The Technical Assistance Collaborative (TAC) and the Consortium for Citizens with Disabilities (CCD) Housing Task Force recently released Priced Out in 2010 that shows the average national rent for a one bedroom apartment is more than the monthly payments received by people with disabilities on Social Security Income (SSI).  The average SSI monthly payment with state supplemental payments is $703 yet the national average rent is $785.  So even if a person spent all of their income on rent, most would not be able to afford it. 

 Priced Out in 2010 brings to the forefront terrifying realities that millions of people with disabilities face everyday.  It shows that people all over the country have no choice but to rent the cheapest housing they can find or live in an institution.  This fact alone has many large and looming consequences.  Finding the cheapest housing often means living in an unsafe and run-down neighborhood.  For people with disabilities, living in a dangerous environment is more risky and can have greater consequences such as difficulty finding a personal attendant who is willing to come at night. 

Studies have shown that low income housing is further from hospitals, public transit stops, and even grocery stores.  If a hospital is not close to where someone lives, it can have lasting medical costs.  Additionally, the quality of a hospital is often linked to the wealth of its surrounding areas.  For many people with disabilities, living near public transit is essential for becoming independent and holding a steady job.  Relying on ParaTransit for transportation is not a choice many want to make. 

Another side affect of living in a low income neighborhood is the quality of education in the school district.  Since public schools are largely funded by local taxes, poor neighborhoods often mean poor schools.  As we all know, when money is tight special education programs are severely underfunded and overall quality of education decreases.  As AAPD has said, education is the key to the future.  By living in neighborhoods with bad schools, we are continuing the cycle of relying on SSI instead of being able to get a good job to become self-sufficient.

When looking at the deeper meaning of Priced Out in 2010, we should think about how relying on an insufficient SSI payment affects people with disabilities, not only by being forced to live in low income housing but also the negative aspects of a poor neighborhood.

Advocacy Steps:

1. Conduct a review locally of average rents in your area and compare with the typical SSI check in your state.
2. Issue a report and demand more affordable housing!

NY Times Highlights Mismanagement of Group Homes

via the NY Times (8.2.11):

For Executives at Group Homes, Generous Pay and Little Oversight

Medicaid money created quite a nice life for the Levy brothers from Flatbush, Brooklyn.

The brothers, Philip and Joel, earned close to $1 million a year each as the two top executives running a Medicaid-financed nonprofit organization serving the developmentally disabled.

They each had luxury cars paid for with public money. And when their children went to college, they could pass on the tuition bills to their nonprofit group.

Philip H. Levy went as far as charging  the organization $50,400 for his daughter’s living expenses one year when she attended graduate school at New York University. That money paid not for a dorm room, but rather it helped her buy a co-op apartment in Greenwich Village.

The rise of the Levy brothers, from scruffy bearded social workers in the 1970s to millionaires with homes in the Hamptons, Sutton Place and Palm Beach Gardens, reveals much about New York’s system for caring for the developmentally disabled — those with conditions like cerebral palsy, Down syndrome and autism...

>>>For the Full Article

Addressing Accessibility in Social Media

via the Nonprofit Technology Network (7.11.11):

Addressing Accessibility in Social Media

By Stuart Holland, Sr. Web Consultant and Dan Mouyard, Sr. Web Developer, TerpSys

In an ever-changing world of social media and web collaboration, tools for user interaction and engagement are becoming increasingly prevalent. Many non-profits have embraced features such as forums, blogs, user profiles, and photo/video sharing as a means to extend their reach.

Your organization may have implemented any number of social tools in the past, or may be considering doing so in the future, but with these decisions often come concerns about how to best address your audience’s diverse needs. These needs may relate to accessibility and the user-friendliness of your site for those with auditory, visual, cognitive or mobility impairments...

>>>To Read the Full Article

Chipotle Loses Disability Access Case

via Disablog (4.26.11):

Chipotle Loses Disability Access Case

Maurizio Antoninetti sued Chipotle Mexican Grill arguing that the restaurant chain’s 4-foot counters were too high for people using wheelchairs. On April 18, 2011, the U.S. Supreme Court upheld a ruling made by the Federal Court of Appeals last year which found in favor of Antoninetti saying that the counter “significantly reduced Antoninetti’s ability to enjoy the ‘Chipotle experience.’”  Chipotle has said they will be retro-fitting the counters in their restauraunts to make them accessible to wheelchair users. Now my only question is - what about other restaurants like Subway, Qdoba, etc? Are they already in compliance with the law, and Chipotle just dropped the ball?

>>>To View this Blog Post

Program Helps Vets with Disabilities Become Entrepreneurs

via the Department of Defense (8.1.11):

Program Helps Disabled Vets Become Entrepreneurs

By Donna Miles

Retired Army 1st Sgt. Renee Floyd wasn’t about to let a disability stop her from realizing her dream of having her own business.

Applying 21 years of experience as an Army mechanic, she launched BRF Mobile Lube Service in Phenix City, Ala., in 2009 and began traveling to people’s homes and businesses to provide convenient oil changes and maintenance services.

But her big break came last month, she said, when she attended the Entrepreneurship Bootcamp for Veterans With Disabilities at Florida State University. The nine-day EBV crash course is part of a program designed to help participants get their businesses off the ground or enhance ventures they have started...

>>>For the Full Article