Join The Arc and Inclusion International for “Achieving Inclusion Across the Globe”

Convention attendees giving a thumbs up
Registration is now open for the 2012 National Convention and International Forum in Washington, D.C. October 25-28. This year, The Arc will be joined by Inclusion International, a global federation of family-based organizations advocating for the human rights of people with intellectual and developmental disabilities. This is an incredible opportunity to connect with others in the intellectual and developmental disability community at this annual gathering of The Arc’s membership, chapter staff and volunteers, professionals and experts in the field and individuals with I/DD and their families.

Meet us at the Grand Hyatt in downtown D.C. to explore the global implications of Article 19 of the Convention on the Rights of Persons with Disabilities: Living independently and being included in the community. Inclusion International is involved in an important campaign to promote Article 19, which will culminate at this event with the release of a special Global Report. Also, we’ll focus on national and international issues related to advocacy, employment, and public policy.

This four-day event filled with enlightening and informative sessions kicks off with pre-conferences dedicated to the topics of leadership and self-advocacy. Then, The Arc & Sprout National Film Festival brings you a new slate of entertaining short films by and about people with I/DD. The Arc will hold three Annual Business Meetings to adopt several revised position statements and hold elections for its Board of Directors among other important business. And, look for Entrepreneur Alley in the Marketplace where businesspeople with I/DD can showcase their entrepreneurial spirit. Then, stick around for a closing event with D.C. Mayor Vincent Gray sharing the popular tradition of “Hand Dancing” (similar to swing dancing) with the crowd.

Register now at www.thearc.org and take advantage of early registration and hotel discounts.

Special Thanks to Our Sponsors: Arc Thrift Stores of Colorado, CARF International, Diversified Nonprofit Services, Hammer Travel, Managance Coaching and Consulting, Marsh, Medisked, MetLife, Mutual of America, NADD, Rest Assured, Special Needs Alliance and Vibrant Creative.

NYSARC Weighs In on Justice Center Legislation in New York

New York Governor Andrew Cuomo addressed last year’s New York Times expose on abuse and neglect in the state’s system by proposing “The Justice Center for Protection of People with Special Needs.”  NYSARC issued a memorandum of support of the plan –  read the full memo here: Memorandum of Support – S7400 Protection of People with Special Needs (PDF).

The Arc Responds to the National Disability Rights Network’s Newest Report

Washington, DC – The Arc of the United States applauds the National Disability Rights Network for its report “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.” The report reviews the facts of Ashley X, who five years ago made national news when her parents decided to medically stunt her physical growth and maturation. The report presents a compilation of similar experiences and “treatment” of individuals with disabilities that discriminates against them based on their disability and undermines the integrity of their unique individuality.

“We are saddened and angered by the evidence NDRN presents about people with intellectual and/or developmental disabilities who continue to experience disability–related discrimination in decisions to provide, delay, deny, or limit health care interventions or treatments. Protections must be in place to assure that an individual’s health, well-being, and expressed wishes, if known, are the only justifiable bases for making medical decisions,” said Peter V. Berns, CEO of The Arc.

The Arc has a history of speaking out against such medical atrocities and advocating for changes to ensure the rights of individuals with intellectual and/or developmental disabilities are protected. For years, The Arc has held the belief that growth attenuation treatment to modify a child’s typical development should be prohibited.

The Arc looks forward to working with NDRN and other organizations to create additional safeguards to protect the civil rights of people with disabilities.

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 (I/DD) 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 I/DD, 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 I/DD, 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 I/DD 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 I/DD field, self-advocates, professional support staff, and families) to help explain the complex issues facing people with I/DD 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 I/DD. On behalf of people with I/DD 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 I/DD have a seat at your table in upcoming episodes.

Sincerely,
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

Important Survey from the Disability and Abuse Project of Spectrum Institute

Your Participation is Appreciated

A startling fact that many not be aware of is that individuals with intellectual and developmental disabilities are not only more likely to be victims of abuse, but they are more likely to be victimized repeatedly.

Struck by the number of abuse cases against individuals with disabilities appearing in the media, the Disability and Abuse Project of Spectrum Institute created a survey on the attitudes, beliefs and experiences of many demographic groups (including individuals with disabilities) that have encountered abuse as victims and through their profession.   The survey was created to help advocates and professionals better understand what victims are saying about their abuse experiences and how professionals view their experiences with abuse/crime victims.

This survey will provide professionals in the disability field useful information that can help better serve our community.  The survey takes about 8 minutes, is completely anonymous, and all results will be published online.

Whether you are a person with a disability, a family member of someone with a disability or a professional in the disability field, you are welcome to take this survey. Over 2300 have already let their voices be heard, make sure yours is one of them!

Photos from the Disability Policy Seminar 2012

Last week, nearly 700 advocates from 48 states gathered in Washington, D.C. for the annual Disability Policy Seminar. Attendees heard from Assistant Attorney General Tom Perez, Special Assistant to the President on Disability Policy  Kareem Dale and were treated to a reception on Capitol Hill hosted by Sen. Tom Harkin (D-IA). They also had the chance to gather information from policy experts and representatives from the Obama administration about key issues for the I/DD community before spending a day in the House and Senate advocating for their cause with their elected representatives. And many attended special meet & greet sessions for self-advocates and siblings from The National Council of Self Advocates of The Arc and the National Sibling Council. If you missed this year, be sure to plan to attend the 2013 Disability Policy Seminar April 15-17 at the Grand Hyatt in downtown D.C.