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Disability Advocates Ready to Hear From Candidates at National Forum

The National Forum on Disability Issues is just a few weeks away, but neither presidential candidate has made an official commitment to attend. The disability community is taking note. A lot is at stake in the election for this population, which accounts for one in five American citizens.

The National Forum will be an historic event and the only opportunity during the campaign that President Obama and Governor Romney will have to showcase their views on the myriad of issues facing people with disabilities. Scheduled to take place in Columbus, Ohio on September 28, the Forum will be attended by 500 individuals with disabilities, their families and advocates. The event will be nationally webcast at watch parties all over the nation.

The forum is not a debate, but rather a venue in which the candidates can share their visions for a positive and meaningful future for individuals with disabilities. Ohio Senatorial candidates Sherrod Brown and Josh Mandel have also been invited to attend to express their views.

The Arc has joined more than 50 other national organizations in pledging our support as a co-sponsor of this event.

“People with disabilities are disproportionately impacted by the major campaign issues in this election,” said George Jesien, Executive Director of the Association of University Centers on Disabilities, one of the event’s sponsors. “The fiscal uncertainty of our nation, proposals to reform entitlement programs, the battle over health care reform and perpetually dismal job opportunities for people with disabilities – these are major concerns for our community and we hope to have meaningful participation from both campaigns to address them.”

For the more than 57 million Americans with disabilities, including people who are acquiring disabilities as they age and the growing number of veterans with disabilities, the Forum is the one place they can hear the candidates’ views on issues such as health care, long-term services and supports, education and employment. A Forum was held during the 2008 presidential elections, and both the Obama and McCain campaigns participated.

The issues facing Americans with disabilities and their families are universal and non-partisan. More than 50 diverse aging and disability organizations have come together to host the Forum, with more sponsors joining every day.

The disability community is counting on the presidential candidates to speak up for disability issues and make their voices heard on the nation’s only platform dedicated to this topic. For more information on the Forum and how to invite the candidates, visit The Arc’s Action Center.

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Turbulence for People With Disabilities: What The Arc Is Doing to Make Air Travel More Accessible to People With Disabilities

Recent headlines about people with disabilities facing difficulties while traveling are troubling – just this week, the Vanderhorst family from Bakersfield, CA was not allowed to board an American Airlines flight home from visiting family on the East Coast, after they claim a pilot discriminated against their son Bede, who has Down syndrome. Stories like this one demonstrate the need for the airline industry to work with families to learn what to expect when people with intellectual and developmental disabilities (IDD) travel.

One chapter of The Arc, The Charles River Center in Massachusetts, is leading the way in this type of education. Working with Massachusetts Port Authority, JetBlue, and the Transportation Security Administration (TSA), The Charles River Center has created a new program called Wings for Autism.

Parents of children on the autism spectrum have a lot to take into consideration before making travel arrangements, from how their loved one will respond to the lights at the airport, their comfort level with airport security talking to or touching them, and how the noise on the plane will affect their child.

Wings for Autism sets up simulations of airport travel and security at airports across the country, giving families and airport and airline personnel an opportunity to do a test run for air travel.

At a recent simulation at Logan Airport in Boston, volunteers from JetBlue including flight attendants and pilots, staff from United Airlines, TSA officials, and ticket counter agents practiced the routine of air travel to prepare parents and children for what to expect when traveling. The simulation required families to clear security, board the plane, fasten their seatbelts, and prepare for take-off. For children who had issues with the various steps of the simulation, behavioral specialists were on hand to help parents and children work through the exercise.

While the program’s primary goal is to help children and parents, there is also an orientation process for TSA and airline staff. This is the kind of education that appears to be desperately needed across airlines. And The Arc is looking to expand this program, so that more families and airline and airport personnel can make flying a little smoother.

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Take Action to Continue to Fight to End the “R Word”

The Arc is continuing our efforts to end the use of the “R-word,” and unfortunately our work is not done. The latest instance of the use of the word was on the website of a Florida radio station. Not only was the station using this inappropriate language, but they were using a photo of a person with a disability without permission.

The Arc has a zero tolerance policy for using the R word, and as members of our movement, we always encourage you to get involved to put a stop to the use of the word and educate people about why it is hurtful. The Arc is a part of the “Spread the Word to End the Word” campaign, and we want you to add your voice online via their efforts on Twitter and Facebook.

What You Can Do

And you can go further, by encouraging your friends and neighbors to get involved with The Arc at the local, state, and national level. The larger our movement, the louder our voice.

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An Open Letter to the Dr. Phil Show: People With Disabilities Have a Voice

Dear Dr. Phil,

What the disability community can do:

I am writing on behalf of the millions of people with intellectual and developmental disabilities (IDD) in our nation and their loved ones that may have seen the April 13, 2012 Dr. Phil episode entitled “Deadly Consequences.” As the nation’s largest organization serving and advocating on behalf of people with IDD, with a network of over 700 chapters across the country, we’ve received many outraged complaints about the content of this program, and after viewing it, I felt compelled to contact you to voice our concerns.

Frankly, we are appalled by the superficial coverage given to a subject that is, literally, a matter of life or death for Jeffrey, Janet and many other people with severe physical and cognitive disabilities. Your show did a great disservice to people with intellectual and developmental disabilities, as well as others who develop severe disabilities throughout their lifetimes as a consequence of traumatic brain injury, trauma experienced in serving our country, and the natural process of aging. Moreover, asking the audience to serve as Dr. Phil’s death panel and vote on whether Jeffrey’s and Janet’s lives are worth living was simply wrong. It is reassuring that the majority of people taking the online poll on your website reject the audience’s conclusion.

Annette Corriveau is entitled to free speech. But so are her son Jeffrey and daughter Janet. While they cannot physically speak for themselves, your program still could have provided for their voice to be heard. It should not be presumed that people who can’t speak are totally unable to communicate. Perhaps you could have interviewed the caregivers who interact with them on a day to day basis and could speak with authority about how Jeffrey and Janet communicate what they are feeling and about their quality of life. Often it is more a matter of our learning how to listen and to interpret the other cues that individuals with severe disabilities are able to provide. Your show focused only on Annette’s opinion, and while she is their mother, she admitted that she sees them only every other month and institutionalized her children many years ago.

You also could have interviewed other people with severe disabilities who, like Jeffrey and Janet, were written off as having no value and no abilities, yet who have succeeded in living in and in participating in their communities. Too often people with severe disabilities are dismissed, yet when given a chance and provided appropriate supports they can rise above the low expectations that others have for them. You might, for example, have interviewed other parents who fought to get their son or daughter out of an institution and have been amazed at how they have succeeded far beyond what anyone expected.

The show would also have been enriched by interviewing some of the many experts that have a deep understanding of individuals like Jeffrey and Janet and extensive experience in supporting people with severe disabilities to live meaningful lives in the community. There are families all across the nation fighting to get their sons and daughters with severe disabilities out of institutions and get them the home and community based services they need. Their perspective, and that of advocates in the disability rights movement, would have added balance to the show. Your viewers need to understand the history of oppression of people with severe disabilities in the country and how far we’ve come. The viewer has no idea of the dark history of the eugenics movement in the United States and globally because you didn’t show it.

The Arc is the largest national charity federation advocating for and serving people with IDD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

We can serve as a resource for future shows, providing technical assistance and suggesting guests (experts in the IDD field, self-advocates, professional support staff, and families) to help explain the complex issues facing people with IDD for the audience who may have no interaction with people with disabilities in their daily lives. The result of your failure to include this perspective left the impression on your millions of viewers that Jeffrey, Janet, and other citizens with disabilities don’t have a voice and rights. They do.

The Dr. Phil show has a responsibility to get it right for your viewers, including people with IDD. On behalf of people with IDD and their families, we ask that you plan another show that would demonstrate this history, illustrating how people with severe disabilities who were previously relegated to institutions have defied all expectations.

The timing is right for you to put these issues in the living rooms of Americans, as fifty years ago, President Kennedy made a call to the nation to help bring people with intellectual and developmental disabilities out of the shadows, to give them opportunities to lead productive, quality lives. We are also approaching the 30th anniversary of the state of New York announcing the closure of the nation’s most notorious institution, Willowbrook, which was an overcrowded, filthy, deplorable warehouse for thousands of children for decades and the site of a highly controversial Hepatitis A study starting in the mid-1950s through the 1970s.

The Arc stands ready and willing to assist you in preparing a program that accurately portrays the lives of people with intellectual and developmental disabilities, shows the rich history of this movement, and makes the public aware of just how similar people with severe disabilities are to you and me.

I hope you take The Arc up on our offer to be a resource for you so that you can live up to your duty as a journalist and so that people with IDD have a seat at your table in upcoming episodes.

Peter V. Berns
CEO, The Arc of the United States

What the Disability Community Can Do

If you share the same concern that we do about this episode, send Dr. Phil a message on Twitter and let him know your feelings. Use the hashtag: #VoiceofTheArc

Here’s an example:

@DrPhil Individuals who are non-verbal still have a voice. Give everyone a chance to hear them on a future show. #VoiceofTheArc

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The Arc Speaks Out on Potential Closing Mabley and Jacksonville Developmental Centers in Illinois

The Arc of the United States fully supports the closure of the Mabley and Jacksonville Developmental Centers. With 2,027 individuals in institutions, Illinois now institutionalizes more people with intellectual and developmental disabilities (IDD) than 48 other states. Closing these facilities will start a new chapter in the state – one in which people with IDD can move on to a life that is more inclusive and allows for the opportunity to live in the community, rather than in isolation.

Institutions enforce an unnatural, isolated, and regimented lifestyle that is neither appropriate nor necessary. According to The Arc’s Families and Individuals Needs for Supports survey (FINDS), less than 1 percent of families thought institutions were the right place for their son or daughter with IDD – so more than 99 percent of respondents wanted their loved one to live elsewhere. We should be allocating resources to create new supports and services in our communities so that individuals have a choice in how and where they live, instead of simply placing them in facilities like the Mabley and Jacksonville Developmental Centers. Shifting the use of funds from institutions to individualized supports, including housing, will help make the transition easier for individuals who reside in these facilities and create a more inclusive society – which is win-win for people with disabilities and people without disabilities.

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The Arc Responds to Announcement on CLASS Program

Today, the Department of Health and Human Services announced that it doesn’t see a path forward for Community Living Assistance Services and Supports (CLASS) Program at this time.

The Community Living Assistance Services and Supports (CLASS) Program was created to help working adults prepare for their future in the event they need help maintaining independence in the community. It was also intended to take the pressure off Medicaid, so that Medicaid can better serve the needs of low income communities. If CLASS is not implemented, the Medicaid program will continue to take on the load of long term service needs for many Americans, who will be forced into a lifetime of poverty to qualify for this assistance.

The need for long term care remains a major issue facing millions of American families, and it will take real leadership in Washington to solve this problem so that families face a more certain economic future. Members of The Arc expect the Obama Administration to find a way to keep the promise they made to individuals who need the services CLASS would provide. We stand ready to help the White House and HHS find a solution to make the CLASS program viable.

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Autism Bill Now Law: Let’s Celebrate and Get Back to Work!

Thanks to many of you who reached out to your Members of Congress as the clock ticked down on the Combating Autism Act – President Obama signed a three year extension of the law on Friday. Without approval by the House and Senate, and President Obama’s signature, this important law for children on the autism spectrum could have disappeared.

The Combating Autism Act provides funding to educate professionals about proper screening, diagnosis, and intervention for children with autism spectrum disorder and other developmental disabilities. It also funds autism research and surveillance. The Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program is just one of the things that the law supports.

While this is a moment to celebrate our success, our work is far from over. In 2014, Congress will need to revisit this law, and The Arc is committed to pushing for the next version to include services and research across the lifespan.

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Why FINDS Matters

On June 14, 2011 at our press conference announcing the release of our report, Still in the Shadows with Their Future Uncertain, The Arc’s long time friend and colleague, Dr. K. Charlie Lakin, offered the following remarks about the importance of this research. Charlie has now moved on from his position at the University of Minnesota to take the helm at the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education’s Office of Special Education and Rehabilitation Services. His comments at the press conference are well worth thinking about, and are as follows:

“Over my 25 or so years of association with The Arc as a member of various boards at the local, state and national level and as Chair of the Research Committee, one overarching idea has been that The Arc should always be a leader in the movement for people with intellectual and developmental disabilities (IDD) – the first and foremost authority on the issues that concern those individuals. And, the first rule of leadership is to always listen carefully to the source of one’s authority. The Arc’s moral authority is derived directly from listening to and reflecting in its actions the will of those in whose name it exists. It is individuals with IDD and their family members who founded The Arc, who currently sustain The Arc and who are the future of The Arc. They are The Arc.

“In that regard, it was important, even essential that The Arc engaged those primary stakeholders in providing the valuable information contained in the FINDS (Family and Individual Needs for Disability Supports) survey and summary report. . . . Advice is sometimes given that if one is not prepared to deal with the answer, then one shouldn’t ask the question. In asking the questions of this survey The Arc has challenged to respond not only in its advocacy, but also in service delivery. The Arc has committed itself to lead by its own example. It will become an organization to which the sizable majority people with developmental disabilities who want real work can turn to obtain real work. It will be an organization to which the majority of people who want support to live in their own homes or in homes with their family members can turn for in-home support. It will commit itself to divesting of the segregated vocational and congregate residential programs operating under its new, progressive logo. And as it has for 60 years it will continue to take the message of people with disabilities and their families to places of power to assure that the promises made to people with disabilities are promises kept.”

I invite you to dig into the data starting first with the FINDS report, Still in the Shadows with Their Future Uncertain, and then into the technical report and data tables if you are so inclined. Consider what it means for you and the people you care about and consider joining the movement or finding out more about what The Arc is doing for people with IDD.

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Hollywood Needs to Show People With IDD Some Respect

With social media enabling us to stay connected and engaged with communities around the world, the words of individuals, celebrities, and authors can very quickly be spread and deemed acceptable without question simply because we are on the receiving end of too many messages. And when celebrities and entertainment mediums are the messengers, they often rise to the top of our overloaded brains, even when they disseminate derogatory phrases that offend and belittle members of our society.

Although we have made so much progress in removing the ‘r-word’ from our society, some in Hollywood just don’t seem to get it, as we see in the new Universal Pictures movie “The Change-Up.” The kind of language used is hurtful to so many who sit in the theaters thinking they are in store for entertainment, not insult. Words matter, and the film industry needs to learn that people with intellectual and developmental disabilities and their families find this kind of language to be totally unacceptable.

GQ is another recent offender, with a July 15 article by author John B. Thompson reviewing fashion in the United States titled, “40 Worst-Dressed Cities in America.” The article described Boston, MA as number one saying, “Due to so much local inbreeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.” This language has since been removed online, but an explanation from the magazine or apology from the author has not been issued.

The only way to stop offensive language like this is to continue working together to express what these words actually mean. Stand up and be heard! Contact both GQ and Universal Pictures about their offensive comments about individuals with Down syndrome:

This isn’t a question of free speech; this is about respecting people with IDD and understanding that words are powerful, especially when they are coming from sources that are viewed by millions of people worldwide.

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The Arc Urges White House Senior Advisors to Continue to Support Medicaid

It was an emotional morning as the Keatons from West Virginia, the O’Briens from Georgia, the Rodriguezes from Texas, and the Brandts from Virginia shared their personal stories with Phil Schiliro, Assistant to the President and Special Advisor, John Carson, Deputy Assistant to the President, Jeff Crowley, Senior Advisor on Disability Policy, and Kareem Dale, Special Assistant to the President. What an important opportunity for The Arc to touch the hearts and minds of some of the most powerful people in government yesterday, and to show the faces of Medicaid, a program that is a critical lifeline for families with loved ones with intellectual and developmental disabilities (IDD). The Arc appreciates the support the Administration has shown for Medicaid and other programs vital to people with IDD and urges the Administration to continue to champion these programs during the deficit negotiations.

The concern that Medicaid – which millions of people with IDD rely on for health care and assistance with living in the community – is on the chopping block led us to create the “Don’t Cut Our Lifeline” campaign. In April, the House of Representatives passed a budget that would have disastrous consequences for members of The Arc, and we’ve been asking you to take action and contact your legislators to let them know how important Medicaid is to you and your family. The House plan included deep cuts to Medicaid, changed it into a block grant, and seriously harmed other vital programs. The Arc believes that the budget should not be balanced on the backs of low income people and those with disabilities, and Congress must consider raising revenue and ensuring that wealthy Americans and corporations pay their fair share.

The Arc appreciated the opportunity to meet with these high-level Obama Administration officials and for these families to share their story about how Medicaid has been critical to their daughter or son with IDD and their entire family. Listening closely to the families’ presentations, the officials thanked them for providing real life examples of the enormous challenges they face on a daily basis, underscoring the importance of the critical public policy decisions that are being debated in our nation’s capitol. The tension in the voices of family members made clear that the budget debate isn’t about numbers, it is about people’s lives.

Without Medicaid, the lives of the Keatons from West Virginia, the O’Briens from Georgia, the Rodriguezes from Texas, and the Brandts from Virginia would be dramatically different. Some of these parents would have to quit their jobs, some would be forced to choose between keeping their loved one at home or moving them into an institution. Some would be forced into bankruptcy and potentially lose their home simply to provide for the health needs of their loved one. This is unacceptable to The Arc, and the White House staff we met with were visibly moved by each of these families.

We know there are millions more families like the Keatons, O’Briens, Rodriquezes, and Brandts across the country. There is still time to make your voices heard too – join our “Don’t Cut Our Lifeline” campaign!

About the Keatons of Milton, West Virginia

Amanda and Greg Keaton are parents of 18-month-old Graysen, who has DiGeorge Syndrome. DiGeorge syndrome is a disorder caused by a defect in chromosome 22, resulting in the poor development of several body systems. Graysen’s main medical conditions include two severe congenital heart defects – Tetralogy of Fallot and Pulmonary Atresia. In addition, Graysen has required a tracheostomy and ventilator support since 8 weeks old. Graysen spent his first six and a half months in the hospital, and his one year anniversary at home was June 21, 2011. In his young life, Graysen has suffered two strokes, undergone three open heart surgeries, a feeding tube placement, multiple heart catheterizations, and he hit the $1 million cap on his mother’s health insurance before he turned four months old. Graysen’s nursing care, specialized pediatric tube feedings, along with other important therapies and preventive medications and vaccines are covered by Medicaid through West Virginia’s Children with Disabilities Community Services Program.

About the O’Briens of Waycross, Georgia

Deirdre O’Brien has two children, including her 13-year-old daughter, Clare, who has significant intellectual disabilities. Clare also suffers from abdominal migraines, which are similar to traditional migraines but the pain is in the stomach and causes her to vomit continuously for days. Two years ago, Clare’s migraines became very severe, occurring nearly every two weeks. Her hemoglobin dropped severely, she missed a significant amount of school and her parents missed work to take care of her. During this period, the O’Brien family saw no alternative but for Deirdre to quit her job and stay at home in case her daughter became ill. The state of Georgia recognized Clare’s needs and she was granted a small Medicaid home and community based waiver, which allowed Deirdre to hire staff to help care for her daughter.

About the Rodriguezes of Tomball, Texas

Natalie and Ruben are parents of 31-year-old TJ, who was born with significant intellectual and developmental disabilities. TJ needs assistance with everyday activities like bathing, brushing his teeth, getting dressed in the morning, communicating effectively, walking, and preparing his meals. As he has gotten older, TJ’s mobility challenges have greatly increased along with his medical needs. Medicaid covers TJ’s neurologist, endocrinologist, rehabilitation specialist, occasional home care, speech therapist, orthopedic specialist, primary care, and his prescriptions. In addition, through TJ’s Medicaid Home and Community Services slot, which took nine years to receive, his parents have been able to make modifications to their home that allow TJ to live with them, like ramps and bathroom modifications.

About the Brandts of Springfield, Virginia

Carrin and Mitchell Brandt are parents of 10-year-old Bailey, who has an intractable (uncontrolled) seizure disorder, cerebral palsy, a history of aspiration and significant global delays. Bailey needs assistance and support with all daily living and recreational activities, and Medicaid helps pay for it. She has a shunt, a G-tube, and uses a communication device. Bailey has had more than five seizures daily, and Medicaid paid for her brain surgery to remove her left hemisphere for better seizure control. Medicaid has paid for over fifteen seizure medications, one of which was over $1,000 for a one week supply. She has had orthopedic issues, including a hip displacement and a leg length discrepancy. When Bailey grows older, she will need Medicaid for long-term support needs, such as residential and day support.