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Convention Day Two: Honors, New Projects, and Reflecting on the Past and Future

/in /by David A. Kennedy

The second and final day of The Arc’s 2010 National Convention wrapped up yesterday, and the highlights flowed all day. In fact, there were so many highlights, we’re putting them into a list! Here are the top five moments from day two at The Arc’s 2010 National Convention:

Paul Marchand Closing Banquet image

1. Paul Marchand, the longtime Director of the Disability Policy Collaboration, was honored for his three-decade-long career in the disability community. The Arc sent Paul off in style with a closing banquet that was attended by many of his colleagues, friends, and family. You can view a photo montage of Paul’s career here. Paul presented The Arc with a gift, the pen used by President Barack Obama to sign Rosa’s Law, framed and ready to hang in The Arc’s national office as a symbol of progress and inspiration.

2. Marty Ford, the current Acting Director of the Disability Policy Collaboration, received The Arc’s President’s Award for her work with The Arc’s public policy efforts.

3. Margaret-Lee Thompson received the Advocacy Matters! award, which was established in honor of the late Lorraine Sheehan. Margaret was chosen to receive the Advocacy Matters! Award because she exemplifies the spirit of Lorraine, who spent her life advocating for the rights of people with intellectual and developmental disabilities.

4. Ann Cameron Caldwell provided an overview on the exciting new Autism Now project, stemming from a $1.87 million grant awarded to The Arc by the Administration on Developmental Disabilities in September.

5. Sharon Lewis, Commissioner of the ADD and Kathy Greenlee, Assistant Secretary for the Administration on Aging, spoke at plenary sessions. Plus, Melody Musgrove, Director of the Office of Special Education, also took the podium at a plenary session.

For more photos of yesterday’s activities, see our Facebook page and our Flickr profile. And remember, you can get breaking updates from our Twitter profile, and follow the conversation via our hash tag: #thearc10.

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A Glee-ful Start to Convention 2010

/in /by David A. Kennedy
Image and Inclusion Award 2010

Actresses Robin Trocki and Lauren Potter, from the hit show Glee, received The Arc’s Inclusion & Image Award in recognition of their achievements in television for breaking down barriers, increasing awareness, and challenging stereotypes.

Yesterday turned into one of the most memorable days in The Arc’s history. The Arc’s celebrated its 60th year with an opening day at its National Convention. The day included a sneak peek of our new brand and logo, to be revealed to the public in March, and a visit by Actresses Lauren Potter and Robin Trocki from the hit show Glee.

The stars received The Arc’s Inclusion & Image Award in recognition of their achievements in television for breaking down barriers, increasing awareness, and challenging stereotypes. The actresses answered questions from the audience, signed autographs for people, and posed for pictures with fans. Both women said they love acting and being on the TV show Glee.

But all fun aside, both actresses and their family members, emphasized the importance of people with intellectual and developmental disabilities embracing a life full of determination, advocating for themselves all along the way. Their example is an inspiration to many.

For more photos of yesterday’s activities, see our Facebook page and our Flickr profile. And remember, you can get breaking updates from our Twitter profile, and follow the conversation via our hash tag: #thearc10.

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Four Ways to Follow the 2010 National Convention

/in /by David A. Kennedy

The Arc's 2010 Convention image

Whether you’re attending this year’s convention or not, there’s plenty going on that you’ll want to keep up with. Following all the happenings is easier than ever, thanks to the web and social media.

  • Follow this blog. It seems like a no-brainer, but we just launched, so help us spread the word. We’ll fill this spot with all the news and information coming out of convention. You can find the latest headlines from the blog right on our home page, in the bottom left-hand corner.
  • Like us on Facebook and follow us on Twitter. Each day, we’ll be posting real-time updates on our social media profiles as well, in addition to meatier updates here. On Twitter, you can use the hash tag, #thearc10 to follow the conversation centered around the convention. If you’re at convention, and tweeting, feel free to jump into discussion.
  • Visit our Flickr page. Flickr, a place to share photos, will be the first place we post photos each day from convention events. Also, if you’re taking and posting photos there, we invite you to post them to our group page.
  • Use the Convention website. Our convention website is still the best place to go for all the convention particulars, like the schedule, list of sponsors, and exhibitors and more.
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Interpretations of Rosa’s Law Confusing: Clarification From the DPC

/in /by The Arc

There has been some confusion among intellectual and developmental disability advocates over varied interpretations of the language in Rosa’s Law and how it will be implemented at local, state, and federal levels. The Disability Policy Collaboration has offered some clarification on key points in the legislation to help chapters of The Arc respond to questions by their constituents.

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President Barack Obama speaks at the official ceremony of the signing of Rosa’s Law Friday, October 8.

Quick Facts about Rosa’s Law

  • The term “mental retardation” will be replaced with the term “intellectual disability” in federal health, education, and labor statutes. Rosa’s Law applies only to programs under the jurisdiction of the Health, Education, Labor and Pensions (HELP) Committee, such as IDEA, vocational rehabilitation, ADA, health care, and a few others.
  • The law does not require any terminology change in state law. However, since many of the affected federal laws relate to state programs, the states will likely begin using the new term for these programs. More importantly, when a program covered by Rosa’s Law, such as IDEA, is reauthorized, any rules to implement the changes will then use “intellectual disability” instead of “mental retardation.”
  • While most states have changed some terminology voluntarily and by statute, the changes vary in scope. For example, the vast majority of states have changed the names of their respective state agencies, using the term “developmental disabilities” in the agency name. But many of the programs overseen by these agencies still use the term “mentally retarded” (for example: Intermediate Care Facilities for Persons with Mental Retardation (ICF/MR)).

A goal of The Arc is to get a similar bill introduced in the 2011-2012 Congress, which will apply to other programs that are just as important to people with intellectual and developmental disabilities, namely Medicaid.

To download these quick facts as a PDF, click here.

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Bullying in Schools Could Violate Anti-Discrimination Laws

/in /by The Arc

The Department of Education issued guidance last week to support educators in combating bullying in schools by clarifying when student bullying may violate federal education anti-discrimination laws. The guidance comes in the form of a “Dear Colleague” letter sent to schools, colleges and universities, explaining educators’ legal obligations to protect students from student-on-student racial and national origin harassment, sexual and gender-based harassment, and disability harassment. President Obama also recorded a message about the problem broadcast on YouTube.

The White House and Department of Education also announced next steps to address bullying and harassment in schools. Early next year, the White House will host a conference to raise awareness and equip young people, parents, educators, coaches and other community leaders with tools to prevent bullying and harassment. This conference will build upon efforts led by the U.S. Department of Education and other federal agencies to spark a dialogue on the ways in which communities can come together to prevent bullying and harassment.

“We’ve got to dispel the myth that bullying is just a normal rite of passage, or an inevitable part of growing up. It’s not,” said President Obama. “We have an obligation to ensure that our schools are safe for all of our kids. Every single young person deserves the opportunity to learn and grow and achieve their potential, without having to worry about the constant threat of harassment.”

Following the release of today’s guidance, the Department plans to hold technical assistance workshops around the country in early 2011 to help educators better understand their obligations and the resources available to take prompt and effective steps that will end harassment and bullying in schools and on college campuses.

The Obama administration launched a Stop the Bullying Now campaign and www.bullyinginfo.org, a national database of effective anti-bullying programs. Read the “Dear Colleague” letter here or hear the President’s message here (or view it above).

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The Arc of Indiana’s John Dickerson on the “Real Problem”

/in /by The Arc

On Wednesday, the Associated Press reported that some state workers in Indiana suggested leaving people with intellectual and developmental disabilities at homeless shelters if they can’t be cared for at home due to decreased funding for support services.

The Arc of Indiana’s John Dickerson wrote on his blog about the “real problem.”

He said:

No family who cares for a loved one with a developmental disability—such as autism, Down syndrome, or cerebral palsy—should ever be told that a homeless shelter is an option. But, punishing state employees will not address a very real problem.

The real problem is that viable options are not being made available to families due to Indiana’s revenue short fall and changes in state policy. Families in need are facing a crisis in receiving critical services.

What can you do to help?

  • Learn a bit more about what we do.
  • If you’re in Indiana, join The Arc and contribute to the solution.
  • Or you can make a donation, and know that it will go a long way in helping create solutions to this pressing issue.
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Indiana Ends Food Aid for People With Developmental Disabilities

/in /by The Arc

The Arc of Indiana’s John Dickerson, the chapter’s executive director, says:

We’ve got to have some sort of a way to cover people in the meantime because otherwise this new food policy could leave people without any food budget at all.

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Top 10 Reasons to Attend The Arc’s National Convention in Florida

/in /by Shelly DeButts

Convention Speaker image1. Get an overview of the newly established Autism NOW! Center funded by a $1.87 million grant from the Administration on Developmental Disabilities.

2. Hear from Sharon Lewis, Commissioner of the ADD, and Melody Musgrove, Director of the Office of Special Education, U.S. Department of Education. Both are speaking at this year’s plenary session.

3. Attend the closing dinner to celebrate Paul Marchand’s 38-year career and contributions to The Arc.

4. Take advantage of networking at the single biggest gathering of the year for self-advocates and families, members of The Arc, employees, board members, experts, and disability professionals.

5. Celebrate the 60th anniversary of The Arc and get excited about the next 60 years.

6. Witness the unveiling of The Arc’s new brand identity.

7. Enjoy sunny Florida and dance the night away at a party hosted by The Arc of Florida.

8. Tell your story and be part of The Archive as we record the oral histories of people involved in the intellectual and developmental disability movement.

9. Let Hammer Travel handle the headache of getting there with special travel arrangements personalized for people with disabilities.

10. Have your voice heard and participate in the future of The Arc through elections, forums, roundtable sessions, and more.

To register, visit the Convention website.

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The Arc Receives ACF Award of $1.87 Million for National Autism Resource and Information Center

/in /by The Arc

Washington, DC – The Administration on Developmental Disabilities (ADD), within the Administration for Children and Families (ACF) at the U.S. Department of Health and Human Services, announced yesterday that The Arc will receive an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities.

The Arc, in collaboration with several key partners, will implement an innovative and dynamic initiative, called Autism NOW: The National Autism Resource and Information Center, to engage and leverage a national network of disability, aging, military, and family organizations to deliver information and resources relevant to individuals with ASD and other developmental disabilities.

“The Arc and our partners are primed and ready to build a dynamic resource to address the needs of people with ASD and other developmental disabilities through this national network. We are proud to have the opportunity to launch Autism NOW, a much needed resource. It is especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of this innovative project,” said Peter V. Berns, CEO of The Arc.

Other partners include the Autistic Self Advocacy Network (ASAN), and Self Advocates Becoming Empowered (SABE) to provide expertise from the self-advocate perspective. For research expertise in key areas across the lifespan in ASD and other developmental disabilities, The Arc has partnered with members of the Association of University Centers on Disabilities (AUCD) Network, also referred to as UCEDDs (University Centers on Excellence in Developmental Disabilities), the Institute for Community Inclusion from the University of Massachusetts, the Developmental Disabilities Institute from Wayne State University, and the Center for Community Inclusion and Disability Studies from the University of Maine.

For deep policy expertise in areas of autism, family support, health care implementation, and aging, partners incude Brandeis University’s Heller School of Public Policy and the National Council on Aging (NCOA). The Arc has engaged a national dissemination team that will connect efforts to key stakeholders in every state and territory in the United States, including the National Association of Councils on Developmental Disabilities (NACDD), National Disability Rights Network (NDRN), Association of University Centers on Disabilities (AUCD), the National Military Family Association (NFMA), National Council on Independent Living (NCIL), and the American Association on Intellectual and Developmental Disabilities (AAIDD). Other key autism organizations will also be included in the Center’s activities.

The project will be led by Ann Cameron Caldwell, Ph.D., the Chief Research and Innovations Officer for The Arc and Tonia Ferguson, Special Projects Director.  “The new National Autism Resource and Information Center will fill a great need in the autism community by providing high-quality resources and information on community-based services and interventions for people with ASD and their families.  The Arc understands the challenges that families face; and we also recognize the vast contributions that people with ASD and other intellectual and developmental disabilities make to our societies and communities,” Caldwell said. “We are proud to have people that identify as having ASD or other intellectual and developmental disabilities (self-advocates) as full partners leading and implementing this initiative.”

“Autism is a heart-wrenching condition that presents special challenges for many families,” said HHS Secretary Kathleen Sebelius. “We want families to know that we are listening to them, and
the release of this grant award, brings us one step closer to providing the resources needed to improve the quality of life for people with ASD and other developmental disabilities.”

“People with ASD and other developmental disabilities face significant challenges in accessing the supports they need,” said Commissioner Sharon Lewis of ADD. “This new center will serve to connect people with ASD and their families to services and activities that promote self-determination, independence, and inclusion in the community.”

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The Arc Calls for Boycott of “Pennhurst Asylum” as a Horror Attraction

/in /by The Arc

Assails Use of Notorious Institution as Halloween Fright House

If there is any “haunting” on the 110-acre former site of the Pennhurst State School and Hospital in East Vincent Township, Pennsylvania, it is in the dark vestiges of an institution where residents with disabilities were abused, neglected, beaten, and sexually assaulted.

Shockingly, the suburban Philadelphia Pennhurst site, which closed in 1987, has now become the location that two developers are using to stage a commercial horror house attraction, scheduled to open to the public on Friday, September 24, called “Pennhurst Asylum.”

The Arc, The Arc of Pennsylvania, The Arc of Chester County, and hundreds of advocates for people with intellectual and developmental disabilities (IDD) in neighboring states are calling on their members and the public to boycott the new attraction, which desecrates one of our nation’s most notorious state institutions.

U.S. District Judge Raymond J. Broderick ruled against Pennhurst in a 1977 class action suit finding the institution guilty of violating patient’s constitutional rights. When it was forced to close in 1987 in the wake of allegations of abuse, it sparked the process of deinstitutionalization; the remaining 460 patients were discharged to live in the community, transferred to other facilities or provided with treatment plans guided by family members.

The Arc of Pennsylvania was a key plaintiff in the litigation that resulted in Pennhurst’s closure to stop overcrowding and abuse sending a strong message about the mistreatment of this vulnerable population.

“This outrageous, offensive and disgraceful business venture is an assault on the historical memory of Pennhurst and diminishes the pain of real people with disabilities who endured unspeakable abuse within its walls. “Pennhurst Asylum” exploits the suffering that took place there and undermines meaningful efforts to eradicate stereotypes and negative perceptions that persist in society against people with disabilities,” said Peter V. Berns, CEO of The Arc.

This fright-filled Halloween themed atrocity, according to property owner Richard Chakejian and his partner Randy Bates, aims to attract customers between 12 and 20 years old. Visitors will be “entertained” and scared by an electro-shock therapy scene with a Frankenstein-like monster; an autopsy room will contain some artifacts that the developers said were found on the property.

Reports of the torso of a female monster, complete with a skeleton face in the autopsy room, is said to “mimic” former residents of Pennhurst or people with disabilities. It’s been reported that in response to these claims, Chakejian said, “This is all traditional Halloween fun.”

Despite a lawsuit filed on Tuesday, by a resident of the East Vincent Township, seeking a court injunction to halt the property development of the Pennhurst property, Chakejian in partnership with Bates, who owns and operates Bates Motel and Haunted Hayride in Glen Mills, PA, are moving forward.

“The Arc is making a plea to all people of good conscience to join us in standing against the opening of this truly horrifying project as well as Mr. Bates’ other attraction, The Bates Motel/Haunted Hayride. We want to send a strong message to business people such as Mr. Bates that the public will not tolerate commercial enterprises which are so disrespectful of a large group of people. While we have come far in the struggle to ensure that people with disabilities are not abused, neglected or mistreated, the “Pennhurst Asylum” is an ugly reminder of how far we have to go,” Berns said.