JFActivist

A Guide for Supporting Vital Services at Upcoming HHS Meetings

by David Heymsfeld, AAPD Policy Advisor

“Open microphone” meetings are being convened in major cities by the US Department of Health & Human Services. These forums enable advocates and others interested in the implementation of the Affordable Care Act to comment in-person on the essential health benefits (EHB) – the core of health services which must be provided in health plans available through health insurance exchanges starting in 2014. 

The purpose of the meetings is to get public input on the requirements established by the 2010 health care reform act for the health care services which must  be covered by health insurance (“essential benefits”)

AAPD suggests that persons appearing at these hearings discuss specific services which they believe must be covered, based on their own knowledge and experience.

The types of services which could be discussed include:

• services needed to enable persons with significant disabilities to learn or keep the skills and functions needed for independent living and working in the community (the technical term is “habilation.”)  This could include occupational therapy, physical therapy, and speech therapy. The services could include training persons with disabilities in communication skills, medication management, personal hygiene skills, behavior management, and social skills  For example, teaching social skills to a person who developed schizophrenia at an early age; teaching people with developmental disabilities how to administer their medication safely or the fine motor coordination needed to dress themselves; and physical therapy to prevent a decline in function for a person with a congenital spine condition. These services could prevent the need for costly institutional care.

•  durable medical equipment needed to improve a persons mobility, hearing, vision, and the ability to communicate. This could include prosthetic limbs ,  orthopedic braces, durable medical equipment (such as power wheelchairs), and other assistive technology.

• Necessary services should not be subject to arbitrary and unreasonable limits, such as limits  on the number of visits, limits on the number of prosthetic limb per lifetime, or unreasonable limits on the costs of durable equipment.

 

Seizing Internship Opportunities

by Sarah Amin, AAPD Programs Intern

“We are lucky to have grown up in the post-ADA generation. The ADA has done a lot for us, but we have a long way to go. Let’s influence the generations after us, and show them that what is good for us is good for everyone else”-Leah Katz-Hernandez, AAPD Youth Transitions Fellow

 On Thursday, October 6, Gallaudet University’s Career Center hosted the event, “Finding Your Perfect Experience to Jump-Start Your Career,” featuring a presentation by guest-speaker Leah Katz-Hernandez, former Gallaudet student and current The HSC Foundation Youth Transitions Fellow with AAPD. The goal of the information session was to highlight meaningful internship experiences as crucial stepping stones to future employment for students with disabilities. As the Youth Transitions Fellow, Leah works closely with The Greater Washington Internship Coalition to develop innovative ways to facilitate collaboration among internship programs serving young people with disabilities in the Greater Washington, DC area. The Coalition is a one-stop opportunity for college students and emerging professionals with disabilities to obtain information on internship programs committed to being accessible and including disability within their framework of diversity.  For more information about the Greater Washington Internship Coalition, please visit www.aapd.com/internshipcoalition.

Before an overflowing crowd of students, faculty, and staff in the I. King Jordan Student Activities Center (named after the university’s first deaf president), Leah took the stage and captivated the audience with stories of her own personal experiences. As a deaf student, she had a very positive and comfortable transition to college life at Gallaudet University, where all programs and services are designed specifically for students who are deaf or hard of hearing. But she stressed that for all individuals with disabilities, the post-college world should be no less intimidating.  There are plenty of internships out there for students with disabilities, in every interest area, from science to public policy to the arts. Students and young professionals should confidently reach out and grab internship opportunities that will test their full potential. As Leah put it, “Don’t let opportunities pass you by!”

During the segment, “Out There: Being a Deaf Intern, ” Leah invited a panel of speakers to the stage, featuring Dylan Hinks, who recently participated in the AAPD Summer Internship program, working in the office of Rep. Ed Markey. Currently a junior at Gallaudet, Dylan’s motto after his internship experience is “Know Thy Opportunities.” His advice to fellow students who are applying for internships is to “Ask for help! Don’t be scared to ask your teachers to help you look over your applications. Don’t be shy!”  Also featured on the panel was Briana Johnson, who had previously interned for Rep. Sam Brownback. Leah, Dylan, and Briana are great role models for other motivated students who wish to take full advantage of programs within the Coalition to secure brighter futures in the professional arena.

The AAPD Summer Internship Program offers undergraduate and graduate students as well as recent graduates with disabilities the opportunity to work in public service for ten weeks on Capitol Hill, at federal agencies, and non-profit organizations. The AAPD Summer Internship Program allows students with disabilities to gain invaluable hands-on experience in government, including insight into government office operations, public policy development, law-making and research, and constituents’ roles in the legislative and administrative processes.  

For more about the AAPD Summer Internship Program, visit www.aapd.com/internships or e-mail [email protected]. AAPD’s program is just one among nearly thirty great programs within the Greater Washington Internship Coalition. For the full list of participating organizations, please visit www.aapd.com/internshipcoalition. 

 

The Canary in the Coal Mine

From AAPD (11.3.2011):

by Leah Katz-Hernandez

Just as I’m flying to California State University Northridge to present at their Deaf College Student Leadership Conference, I was reading a copy of Newsweek. There was a story on the infectious appeal of the #Occupy Wall Street movement. One particular quote stood out to me:

“In 2008 vast new numbers of Americans transformed the political process through social media and small-donor fundraising, electing a rank outsider, Obama, who challenged the natural heirs to the old system, the Clintons. The next year Iranians, empowered by the same technologies, called their own leaders’ electoral bluff and nearly changed the world. This year the very same empowerment gave us the Arab Spring.” - Andrew Sullivan, October 31 2011

The narrative goes on to link the meteoric trajectory of social media’s increasing presence in our daily lives and its impact upon global politics and - yes - corporate responsibilities. The “99%,” as they unveiled themselves on Wall Street more than six weeks ago, spoke out against growing income inequality and argued that financial institutions played a large role in it. The #Occupy Wall Street movement quickly expanded exponentially, garnering solid support through public opinion, even seeing #Occupy camps being set up in other cities. Soon, the #Occupy movement had hit the international level. I was starting to become accustomed to seeing the pictures of frustrated people getting their message out. I was inspired when these same pictures from places such as India, Italy, Chile, Russia, the United Kingdom, Algeria, and Spain appeared.

Some people criticized #Occupy as disorganized and lacking focus.  But other pundits took to the pages of newspapers, magazines, and blogs to defend the #Occupy movement, calling it “not a protest but a true movement.” Regardless of how one defines #Occupy it’s clear to me that it could not have been possible without the power of social media.

We now see where the narrative has led us to, but the untold story is how the narrative didn’t begin at Obama’s 2008 campaign. The revolution of the social media hit the people with disabilities community, with their unique needs and perspectives, and changed their lives before the 2008 campaign. I’m telling this story not to have the disability community take credit as the originators but to give evidence of and solidify our unique status as “the canaries in the mine.”

What, canaries? How does that relate to #Occupy Wall Street and the world of Facebook/ Twitter/ YouTube?

In the olden days, when there was no technology to detect dangerous and deadly carbon monoxide in the mine, people used to bring canaries - bright, yellow, and singing - into the dark pits of the mines. Their purpose was to keep the miners alive. Because the canary was such a small, fragile bird, the carbon monoxide severely damaged the canary’s lungs long before it could have detectable effect on the miners. As soon as the canary stopped singing and dropped dead, the miners knew it was time to get out of the mine. Through this strategy, hundreds of human lives were saved.

The disability community - especially the deaf community, where I hail from - is likewise smaller, more fragile, and the “first to be impacted” by nearly anything that happens in the real world.

At generally the same time as the hearing world, the deaf community discovered blogging and vlogging (video-blogging). In May 2006, as the members of Gallaudet University rose up in a protest against the Board of Trustees’ decision to select a controversial candidate as the next President, the impact revebrated through the circles of deaf social media with a sonic boom. The administration presented their side of the story, which the protesters disputed and learned through the hard way that the mainstream media wasn’t always so fair in their coverage. The frustration of having one same article published in hundreds of newspapers through the Associated Press intensified the protesters’ dissent and added more to their argument that the perception and explantation of the protest was distorted and dishonest by the administration. We were merely students, staff, faculty, and alumni up against media professionals!! Such was the frustration we faced, but I’ll never forget this one game-changing line from the University’s offical public-relations spokesperson, defending the administration’s public relations tactic of distortion and giving misleading explanation of the protest’s real issues:

“Actually, the protesters have been very effective in getting their messages out through blogs and vlogs.”

That was true. Very true. Game-changing true. Ever since before the protest had happened, the deaf community was watching the protest closely and with deep interest through the internet. There was a blog set up that tracked the candidates for the Gallaudet University Presidential Search. Vlogs were made, hot discussions were had, and comments numbered well into the thousands. The anticipation was ripe when the announcement was made in May 2006 and when the information was disseminated, the blogosphere exploded in discussion and activism. There were a few blogs that ultimately became a kind of news channel for the deaf community, rapidly updating nearly daily with new information and developments. This gave us opportunity to present our side and our story, absolutely unfiltered and unmanipulated by the mainstream media.

At the time, we had only one media strategy - tell the truth. Tell the truth. Try to get the mainstream media to explain the truth. We didn’t have any other strategy than that but looking back, we utilized many tools that were enormously effective through the use of social media. We were able to galvanize and organize the community in a mass, to control and continue pushing our message out, and stick a powerful thumb in the side of the big guys.

The underdogs won in October 2006, when the Gallaudet Board of Trustees announced that the president-designate’s appointment would be rescinded. We cheered our victory! And in the aftermath, we were proud that our internet outreach had been so powerful to expand the tent city on Gallaudet University’s front lawn to a series of tent cities across the nation and internationally.

In 2007, when Dr. Robert Davila became the first person of color to serve as Gallaudet University’s president, the moment had great signifiance to many communities. As he took the podium to give his acceptance speech to the community, the first thing he said was “I’m home.” The deaf community cheered once again! That same year, then-Senator Barack Obama surveyed the landscape and decided that the moment was ripe for him to run for the President of the United States.

What the deaf community went through in these turburlent times of 2006-2007 ultimately gave us a small prediction of what would happen in the larger American and even international society. First, the impact of social media and the use of internet campaigns completely changed the way we organized ourselves for social and political causes. Secondly, people of color are now becoming more and more in our society. We are no longer survivors of outdated perceptions, inspiring in their climb towards the top. They are now university presidents, Commander in Chief, even overthrowing regimes.

Wherever you live, whatever your goals, whichever candidate you support, you are living in a world where social media – as mastered by the Deaf community—is a source of power that can’t be ignored.  We tested the atmosphere and carved out a space for great work. What we have done will have a profound impact on movements that follow. 

Watch and take your cues from us.

New York City Cabs Must be Accessible to All

By Alexandria Braboy, AAPD intern

The Justice Department recently backed a lawsuit filed by disability rights advocates that charges New York City Taxi & Limousine Commission (TLC) with non-compliance with the Americans with Disabilities Act. Of the more than 13,000 taxis in NYC, only 232 are accessible to wheelchair users. The lawsuit makes it clear that this disproportionate statistic isn’t good enough. The lawsuit argues that New York is required to make all taxis wheelchair accessible or guarantee an equivalent alternative.

New York City Mayor Bloomberg took issue with a completely accessible taxicab system. A few days ago, he publically dismissed making taxis accessible to all New Yorkers and visitors. He argued that accessible cabs sell for more money, “use a lot more gas,” and that the “average person” would be uncomfortable in an accessible cab, among other things.  

But arguments like his miss the point of the lawsuit. Keeping the majority of cabs—an “essential [service] […] for the public”—inaccessible excludes people with disabilities from an essential mode of transportation. All New Yorkers regardless of whether they have disabilities need taxis; they should be accessible to all.

AAPD is a strong advocate for accessible transportation. We believe that our nation needs to invest in modes of transportation that promote opportunities for everyone.  Fully accessible taxis are an important part of that. 

To weigh in with Mayor Bloomberg, call 311 (or 212-NEW-YORK outside NYC) or email http://www.nyc.gov/html/mail/html/mayor.html 

 

Increasing Diversity in the Workplace

by Helena Berger, AAPD Executive Vice President and Chief Operating Office

Last week I traveled to Philadelphia to be a panelist on Comcast’s Diversity & Inclusion Enrichment Series.  Each month the Enrichment Series celebrates the diversity of their employees, the work they do, and how diversity strengthens the communities they serve, and in the process, their business.  This month Comcast was celebrating National Disability Employment Awareness Month. Joining me on the panel was Comcast’s Director of Recruitment, AAPD’s board member Fred Maahs who is Comcast's Sr. Director of Community Investment, Vice Chair of NBCUniversal Pictures & EVP of NBCUniversal Studios, and Comcast’s Senior Counsel. The theme of the panel was profit by investing in workers with disabilities – people with disabilities represent a highly skilled talent pool that can help employers compete in today’s economy. 

The one-hour panel discussed a wide array of topics, from eradicating attitudinal barriers to employment, to best practices for indentifying qualified candidates with disabilities, to improving disability employee awareness, and creating a culture where all employees feel comfortable seeking the things they need to perform their jobs effectively.  Most of the panel and audience were surprised, if not shocked, when I revealed the current disability employment statistic.  As of September 2011, the labor force participation rate for people with disabilities -- those individuals working, actively looking for work, and available to work -- was 21.1%; for people without disabilities it was 69.7%.  So, 21 years after the passage of the Americans with Disabilities Act (ADA), people with disabilities continue to face pervasive unemployment.  While our society has become far more accessible to people with disabilities, the promise of equal employment opportunities remains largely unfulfilled.

To strengthen the path toward equality and full access for people with disabilities, the public and private sectors will need to work together to increase employment opportunities and address disincentives to employment.  People with disabilities should not have to fear losing their health care and other public benefits in the quest for a job.  Access to transportation, personal care assistance, education, and training must be improved for people with disabilities to participate fully in the 21st century workforce.  And, like Comcast, more private sector companies need to commit to improving employment outcomes for people with disabilities as part of their diversity efforts by devoting human and financial resources to creating inclusive workplaces.  With an enhanced focus from the business community and support from the government, we may finally begin to see an increase in the employment of people with disabilities.    

 

An Opportunity to Transform the Disability Rights Movement

by Jessica Lehman, 2011 Hearne Awardee

In September, thousands of people came out to say: My Medicaid Matters! In front of the U.S. Capitol, a diverse crowd of people came together from all over the country. People with HIV, deaf people, and people with non-apparent and apparent disabilities all shared the importance of our community uniting to stand up for what is right. And people who could not get to Washington DC took action in their own communities, holding local rallies, posting messages about health care, and sending postcards to legislators. The thousands of people who showed up were not just people with disabilities. Allies from women’s organizations and health organizations joined the crowd. Union members and domestic workers were there. Friends came out to show solidarity.

Our movement continues to grow. Incredible sparks are flying today through the Occupy Wall Street movement. People from varied backgrounds and communities are talking about inequality and justice. Thousands are taking to the streets. People with disabilities are camping out in New York, Chicago, and San Francisco. This movement has created a buzz among disability rights organizers and activists across the country. Last week, more than 60 people with disabilities participated in an Organizer’s Forum call to explore the role of the disability community in the Occupy movement. The phone lines carried incredible energy, with excitement about seeing people with disabilities take to the streets, attention to what it means to see people with disabilities claiming solidarity with other oppressed communities, and the possibility of reinvigorating the disability rights movement.

This reinvigoration is what I hope to contribute to as a Hearne awardee, and this energy is what sustains me. Over the last several months, I have dedicated time to growing the Organizer’s Forum as a means to supporting community organizing within the disability rights movement and with the ultimate aim of engaging more people with the movement. Our monthly calls now average 40 participants, and a facebook site notifies people about the calls and allows people to post questions and comments. We now have an email group to allow disability rights organizers to discuss issues of community organizing in the disability rights movement.

One of my earliest organizer mentors taught me about seizing opportunities. He taught me that when a hot issue arises, and people are ready to mobilize and take action, jump on it! Over the past year, a new movement has taken shape – a movement for securing fair treatment and respect for domestic workers, including the personal care attendants who allow many of us as people with disabilities to live our lives with dignity and fulfillment. As a Hearne awardee, I have taken on the work of organizing people with disabilities who employ attendants, as an opportunity to connect the disability rights movement with a broader struggle for justice. Through educating the disability community about workers rights, educating workers on the history of disability rights, and working together for mutually respectful, beneficial relationships, we are moving toward collective liberation.

Would I be doing this work without the Hearne award? Some of it, sure. But my work is stronger because of it. The Hearne award has allowed me to set aside time to do new, cross-movement organizing that I hope will change the course of the disability rights movement. The Hearne award has given me access to people from state and national organizations with a wealth of creative and insightful perspectives. And the Hearne award has given me a strong responsibility to do everything I can to build the disability rights movement, to think outside the box, to not be afraid to take actions that might challenge people in uncomfortable ways, as we work to transform the disability rights movement and get a little closer to justice.

The Hearne award can provide a thousand different opportunities for transforming the disability rights movement. As my early mentor taught me, seize that opportunity! Put in your application. Take the process as an opportunity to share your vision of how the disability rights movement can grow and change, and then take us with you on your way to make that happen. 

 Click Here to Apply for the 2012 Hearne Award!

First-ever Nationwide Test across TV and Radio Scheduled for Nov. 9th

by Jenifer Simpson, AAPD Senior Director for Government Affairs

On Wednesday November 9, 2011, at 2 PM EST, the FCC will be conducting the first ever nation-wide test of the Emergency Alert System or EAS. TV viewers -- and radio listeners -- are advised to take no action as it is only a test of the Emergency Alert System.   At that time, an announcement will come on every TV and radio channel indicating that the emergency alert system has been activated.  Audiences are advised to not be alarmed when they see or hear the message, which will be about 3 minutes long. 

The purpose of the test is to assess how well the EAS can alert the public during certain national emergencies.  Although the FCC and FEMA are taking steps to ensure that everyone has access to announcements made during the test, some people watching cable television (as well as some others) may receive only an audio (not a visual) notice that this is a test.  The FCC and FEMA want to make consumers aware of the test so that they understand that this is only a test and that there is no real emergency.  This test of the EAS is a little different than what's happened before. Such tests usually include an audio EAS tone and a message indicating that “This is a test of the Emergency Alerting System.”  Not only will the Nov 9 test be a little longer--about 3 minutes, but, due to technical limitations, a visual message indicating that “this is a test” may not appear on every television channel, especially for cable TV subscribers.  For these reasons, the FCC and FEMA are taking extra steps to educate the public, especially people with hearing disabilities, that this is only a test.  

What is the EAS?  EAS alerts are sent over the radio or television (broadcast TV and radio, cable and satellite).  State and local emergency managers use these alerts to notify the public about emergencies and weather events, such as tornadoes and hurricanes.  The EAS can also be used to send an alert across the United States if there is a national emergency.  It is common for state and local EAS tests to occur on a monthly and weekly basis, respectively, but there has never been a test of the nationwide EAS alert on all broadcast, cable and satellite radio and television systems at the same time.  The November 9th test will help ensure that the EAS will work if public safety officials ever need to send an alert or warning to the entire country or to a large region of the United States.  

 

Video: English voice and text/ASL: http://deaflink.com/video/eas/eng.html

Video: Spanish voice and text/ASL: http://deaflink.com/video/eas/span.html

 

Click here for more information

 

Click here to complain about problems with the EAS system or the Nov 9 test 

 

Protecting Medicaid across Faith Lines for People with Disabilities: Leaders from the Religious Community to Host a Web Chat

Dear Religion and Disability Leaders:

The shared values of our faiths lead us to support policies and programs that promote independence and dignity for people with disabilities so they can continue contributing to their communities and congregations. Medicaid is one such program.  As we pursue our mission of preserving Medicaid, it is important that the voices of the faith community be a vibrant part of the national conversation.

As you may know, IDAC Steering Committee Member David Feinman is working with AAPD’s “America’s Supercommittee” project to preserve Medicaid.  He is one of six Americans from a variety of backgrounds who are sharing their perspectives on why Medicaid must be preserved.  To learn more about that project, visit the America’s Supercommittee website at:  http://www.ucp.org/public-policy/america-s-super-committee

We now have a powerful opportunity to bring leaders and supporters of the Interfaith Disability Advocacy Coalition (IDAC) into the conversation.  On November 10th, AAPD, IDAC, and project partner UCP will host a faith community web chat titled: Protecting Medicaid across Faith Lines for People with Disabilities.

Our November 10th web chat is essentially a panel discussion where the “panelists”—including David Feinman—are communicating from laptops and the “audience”— members and supporters and people of faith from across the nation—are asking questions via email and seeing the answers on their computer screens.  Through this technology, we can share questions, concerns, and statements of belief with a wide variety of people.  Unlike a live panel, however, we will retain everything that is shared that day in the form of a transcript.  We can then use these powerful questions and statements to educate leaders and our communities about this urgent social justice issue.

Please save November 10th for the web chat.

In the coming days, you will be hearing from us about how this coalition and our supporters across the country can engage in this web chat, including by emailing questions and statements to the moderators, spreading the word among our grass roots, and promoting this event and its message.

Blessings, Ginny

Director, AAPD Interfaith Initiative

 IDAC Convener

 

TV Worth Watching: PBS Premieres Fred Fay Documentary Tonight

From AAPD (10.27.2011):

Tonight PBS will air the documentary “Lives Worth Living” about disability rights champion Fred Fay.   This is TV worth watching.  In an era when so much TV programming features people who are famous for being famous, we have a rare chance to learn about someone who moved mountains. 

Who was Fred Fay?  He was an architect of the disability rights movement.  He was a founder of the Justice for All web network.  He was an organizer, an innovator, and an inventor.  Working from a motorized bed he designed with three computer screens in reach, Fred Fay connected people to ideas and to each other.  Over the course of decades, he knocked down barriers for people with disabilities and helped change our landscape to be more accessible. 

Watch “Lives Worth Living” with your friends, family, congregation, classmates, or neighbors.  Launch a conversation-- what makes our lives worth living, and what would it take to fulfill our enormous potential as Fred did?  What can we invent?  Whom can we touch with our own gifts? 

For broadcast information visit:

http://www.pbs.org/independentlens/lives-worth-living/film.html

Department of Housing and Urban Development Acts to Stop Discriminatory Prohibitions Preventing Persons with Disabilities from Using Service Animals or Emotional Support Animals

By David Heymsfeld, AAPD Policy Advisor

The United States Department of Housing and Urban Development recently began a series of cases against property owners and condominium associations for applying “no pet” rules to prevent persons with disabilities from using service animals or emotional support animals on the property. 

The cases were brought under the Fair Housing Act which requires that in the sale or rental of housing there must be reasonable accommodations necessary to afford equal housing opportunity for persons with disabilities.

 According to HUD Assistant Secretary John Trasvina , HUD interprets the law as requiring the honoring of “requests for animals like service dogs if a person with a disability requires that dog for daily life activities. In these cases, people with disabilities are not seeking special treatment: they are seeking the equal opportunity to enjoy their dwelling just as anyone else can”

The practices challenged in the cases include:requiring residents with assistance animals to use service elevators; requiring burdensome medical documentation  of the need for a service or emotional support   animal;and refusing to allow a tenant to be visited by a friend with an emotional support animal.

The cases may result in the property owners being ordered to pay fines and attorney”s fees.   

Click here for a summary of the recent cases 

 

Click here for general information about filing a claim of discrimination under the Fair Housing Act