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

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

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.

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The Arc Applauds the Passage of Rosa’s Law

Washington, DC – In a huge victory for self-advocates and The Arc, Rosa’s Law – legislation that substitutes the term “intellectual disabilities” for the term “mental retardation” in many federal laws – passed the House last night.

The Senate passed Rosa’s Law earlier this year. Passage by the House will send the measure to President Obama for his signature. The Obama administration supports this legislation and it is anticipated that the President will sign the bill into law shortly.

This is an important stepping stone for shaping future legislation that will transform these outdated terms in entitlement programs. This legislation substitutes the outdated, stigmatizing terms “mental retardation” and “mentally retarded” with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education and labor policy statutes. The legislation does not cover entitlement programs, which includes SSI, Medicare, Medicaid and Social Security.

The Arc was instrumental in the passage of Rosa’s Law by galvanizing support across the nation and through vigorous advocacy. “When President Obama signs this into law we will have achieved another historic milestone in our movement. We understand that language plays a crucial role in how people with intellectual disabilities are perceived and treated in society. Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights,” said Peter V. Berns, CEO of The Arc.

Joe Meadours, Executive Director of People First of California and a member of the board of directors of The Arc of the United States said, “As a self-advocate, passing Rosa’s Law sends a powerful message that people with intellectual and developmental disabilities deserve respect. We want the same things everyone wants and deserve to live in the community just like everyone else. We want to take advantage of our constitutional rights to access education, employment and independent living in the communities we call home.”

Self-advocates and The Arc have led the effort to get the bill enacted into law as part of a nationwide effort to remove the stigma of the “R-word.” The majority of states have altered their terminology by replacing the term “mental retardation” with “intellectual disability” in state laws and in the names of state agencies that serve this population.

“Adoption of people first language by the federal government encourages the general public to follow suit and is a major step forward in changing attitudes, which will ultimately result in increased opportunities for people with IDD to be fully included in society,” said Berns.

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The Arc’s Disability Survey Focuses On Military Families

Washington, DC – The Arc, a national organization that supports individuals with intellectual and developmental disabilities (IDD) and their families is engaging military families connected to individuals with IDD to determine their disability needs through a national survey. The Arc is partnering with the National Military Family Association (NFMA) and other military channels to distribute a special version of The Arc FINDS (Family and Individual Needs for Disability Supports) survey to military families who have a family member with a disability.

The Arc FINDS (Family and Individual Needs for Disability Supports) is a free online survey designed to tap into the knowledge and perspectives of families and individuals with disabilities on issues which arise across an individual’s life span. FINDS has been in the field since late July and already has more than 4,500 respondents, which makes it one of the largest single collections of perspectives from individuals and families connected to intellectual and developmental disabilities in the history of the field. Results will provide greater understanding about what disability-related services and supports are being received currently, where gaps exist, and what new supports may be needed from the military family perspective.

“Reaching out to military families through The Arc FINDS survey increases the meaningful involvement of populations we serve in determining what services are provided and our success rate in delivering those services. We have much to gain from the perspective of military families when you consider the diversity of the force and the unique challenges these families face while serving our country,” said Peter V. Berns, CEO of The Arc.

Survey questions cover areas of advocacy, education, transition, employment, housing, community participation, civic engagement/voting, transportation, caregiving, and demographics. It is written to allow for both the perspective of individuals with IDD, as well as their parents/caregivers. It also allows for the differences in service and supports required at different stages of life.

To access the online survey, go to: and link to the survey “Military Families: Click Here.” Please direct questions to Ann Cameron Caldwell, Chief Research and Innovations Officer at