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The Arc and the Autism Society Annouce Collaboration on the Autism NOW Center

/in /by The Arc

The Arc and the Autism Society collaborate on Autism NOW: The National Autism Information and Resource Center — a National Initiative of The Arc and funded by the Administration on Developmental Disabilities. The partnership will include the engagement of the Autism Society in several aspects of the Center’s activities, including participation on the National Advisory Committee, providing information and referral services through the Autism Society’s AutismSource™ national contact center, and utilizing the Autism Society’s chapter network to disseminate information to the broader autism community about the Autism NOW Center’s activities and resources.

“We are thrilled that Autism Society will play such an important role in the operations and outreach of the Autism NOW Center,” stated Peter V. Berns, CEO of The Arc. “The Arc and Autism Society working together will ensure that more families connected to autism and other developmental disabilities have more meaningful resources and solutions for their needs.”

“We are looking forward to working with The Arc on Autism NOW to ensure that individuals on the autism spectrum and their families get the help they need in finding quality resources,” said Lee Grossman, President and CEO of the Autism Society. “We applaud  the Administration on Developmental Disabilities for responding to the community’s call for this much needed national resource and are pleased to contribute to it.” The Autism Society has provided information and referral services to the community through AutismSource since 1971.

In October, The Arc received 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. In collaboration with several key partners, The Arc is implementing an innovative and dynamic initiative 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. More information about the Center can be found at autismnow.org.

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The Arc Announces New Members to Serve on National Board

/in /by The Arc

Washington, D.C.—A roster of dynamic new members have joined the national board of The Arc. This distinguished group includes activists in the intellectual and development disability (IDD) movement and leaders from a wide range of professions, including business.

The new board includes a vice president of one of the world’s leading investment groups, a former Policy Director for a United States Senator, a corporate attorney, an executive with MetLife and a coach with the Washington Redskins football team.

“It is my privilege to serve as the new President of The Arc,” said Mohan Mehra who has served on The Arc’s Board of Directors since 2004. “This remarkable group shares the quality of being deeply committed to improving the lives of people with IDD and each brings talent, energy, insight and experience. This is an exciting time for The Arc as we assume our position as the largest human service organization in this country serving those with intellectual and developmental disabilities. I look forward to working with board members to move us into the future,” Mehra said.

“The Arc is moving in a clear, new direction as we experience rapid growth including plans to launch a fresh and powerful brand identity this spring. These leaders will help to reinvigorate our organization and propel us even further with their passion and energy. The board brings additional bench strength to The Arc in their communities and nationally; their unique skills will complement and enhance the board’s collective contributions,” said Peter V. Berns, CEO of The Arc.

In a recent survey by Forbes magazine of the 200 largest U.S. charities, The Arc ranks eight (8) in total revenue https://www.forbes.com/lists/2010/14/charity-10_land.html?boxes=listschannelinsidelists

National Board Members of The Arc:

  • President: Mohan Mehra served as Secretary of The Arc and has been a member of the Board of Directors since 2004.
  • Vice President: Nancy Webster, who has served on the Board since 2002.
  • Treasurer: Ron Brown has served on the Board since 2006.
  • Secretary for the Board: Michael Mack, who previously served as Vice President and as Treasurer.
  • M.J. Bartelmay, Hermitage, PA. Immediate Past President of The Arc of Pennsylvania. Previously served as Director at Large on The Arc’s national board.
  • Barbara Coppens, Cherry Hill, NJ, Self-Advocate, Advocate Assistant with Disability Rights New Jersey.
  • Hugh M. Evans, CFA, Baltimore, MD. Vice President of T. Rowe Price Group, Inc.
  • Connie Garner, Ph.D., Burke, VA. Policy Director with the law firm of Foley Hoag LLP. Former Policy Director, Special Populations for the Senate Committee on Health, Education, Labor and Pensions (HELP) where she worked closely with the late Sen. Edward M. Kennedy.
  • Gary Horner, Chief Financial Officer, ACHIEVA. Elected by the National Conference of
    Executives (NCE) to serve a two year term as NCE’s second representative.
  • Thomas A. Judd, Minneapolis, Minnesota. Attorney, Fredrikson & Byron P.A.
  • Joe Meadours, Sacramento, CA. Self-Advocate and Executive Director of People First of
    California. Elected to a second term on the Board.
  • Pat Napoliello, San Francisco. Founder of the California Alliance for Inclusive Communities and former President of The Arc of San Francisco. Elected to a second term on the Board.
  • Kurt Rutzen, Minneapolis, MN. Self-Advocate. Program Specialist for the University of
    Minnesota Institute on Community Integration’s Research and Training Center on Community Living.
  • Lou Spanos, Pittsburgh, PA. Linebackers coach for the Washington Redskins. Previously spent 16 seasons as a defensive assistant with the Pittsburgh Steelers.
  • Directors-At-Large
    • Doug Church, Oak Hill, VA. Vice Chairman, Virginia Heritage Bank.
    • Kelly Piacenti, Chester, NJ. Director of the MetLife Center for Special Needs Planning.
    • Stacy Taylor, San Diego, CA. Partner in the international law firm DLA Piper.

The Arc is especially grateful to Lynne A. Cleveland who served as the President of the national board since October, 2008 and has served on the Board of Directors of The Arc since 2000.

The Arc also thanks our outgoing Board members: Kim Brown, Shirley Dove, Bill Dusold, Chester Finn, Janet Albert-Herman, Cindy Johnson, Mary V. Jordan, and Deb Seman, NCE Representative to the Board.

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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.

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The Arc Applauds the Passage of Rosa’s Law

/in /by The Arc

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

/in /by The Arc

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: www.thearc.org and link to the survey “Military Families: Click Here.” Please direct questions to Ann Cameron Caldwell, Chief Research and Innovations Officer at Caldwell@thearc.org.

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The Arc to Jennifer Aniston — Apologize

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Washington, DC – On “Live with Regis and Kelly” this morning, actress Jennifer Aniston used offensive and inappropriate language when speaking about a recent photo shoot. “You’re playing dress up!” Regis told her. She replied, “Yes, I play dress up! I do it for a living, like a retard!”

On behalf of the millions of Americans impacted by intellectual and developmental disabilities, The Arc is calling on Aniston to apologize for her inadvertent remark.

“Aniston employed language that is offensive to a large segment of the population in this country and when someone with her visibility uses language like this, it only reinforces stereotypes and perpetuates negative perceptions,” said Peter V. Berns, CEO of The Arc.

“We estimate that there are probably in excess of 5 million people in the country with intellectual disabilities, and when you think about all of them, their family members and friends, you’re talking about tens of millions of people who find the use of that term to be really offensive,” Berns said.

“Every time folks hear that word, it reminds them of all the discrimination and oppression they’ve experienced in their lives. Even if it wasn’t intended to insult them, that is the effect of it,” Berns said.

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The Arc Launches Survey on National Disability Needs

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FINDS (Family and Individual Needs for Disability Supports)

Washington, DC – As we pause to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA), The Arc recognizes that there has been significant progress made on behalf of people with disabilities. There is more still to be done, however, and The Arc is initiating a national effort to tap into the knowledge and perspectives of individuals and families within the intellectual and developmental disabilities (IDD) community.

Our goal is to assist the sector in determining needs for services and supports. This survey—The Arc FINDS (Family and Individual Needs for Disability Supports) —will enable those in the field to better understand what services are available, what gaps exist and what new supports are needed.

The Arc FINDS launches July 21 and will be accessible until September 1 to all families and individuals with IDD, both in and outside of The Arc’s chapter network. Dissemination of the survey to a broad range of disability and caregiving networks across the country and throughout our allied organizations will maximize the survey’s reach and findings.

“The Arc FINDS will capture the perceptions of individuals with intellectual and developmental disabilities of all ages, as well as those of their families and caregivers. The results will provide us with a much-needed candid and current view on issues concerning the needs for disability supports across the life span,” said Peter V. Berns, CEO of The Arc.

“We are committed to finding a meaningful way to involve the population we serve in determining the services provided and gauging the successful delivery of these services—just as any business would involve its consumer network through an open market-research style survey. We’re thrilled to be promoting FINDS in collaboration with other top disability organizations focused on those with intellectual and development disabilities,” Berns said.

Ann Cameron Caldwell, Chief Research and Innovations Officer for The Arc, is directing the survey and its evaluation. “The information gleaned from the survey will help identify—and document—nationally, by state and locally what families want in terms of needed services and supports. This information, including personal stories, will be valuable in informing and supporting ongoing program development, advocacy and policy work,” said Dr. Caldwell, who is the parent of a teenager with Down syndrome.

Questions are being asked in 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 assumes for the differences in service and supports required at different stages of life.

Options are in place for respondents to contribute personal stories about their experiences with contact information to support advocacy efforts here in Washington. The vehicle for collection will be an online survey that respondents can link to electronically through The Arc’s website: www.thearc.org. There is no cost to participate and all responses will be confidential; it will take respondents about 30 minutes to complete the survey. The survey may also be found at: https://www.surveymonkey.com/s/TheArcFinds2010

This information will be shared initially at The Arc’s National Convention (November 3-6, 2010 in Orlando, Florida), as well as publicly on The Arc’s website.

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The Arc Participates in Amicus Brief in Virginia v. Sebelius Case

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Advocates Press to Protect Americans from Frivolous Lawsuits from Insurance Co. Abuse

The Arc of the United States (The Arc), the nation’s oldest and largest advocacy group for people with intellectual and developmental disabilities, joined with other disability and disease‐specific organizations to support the arguments of the United States in opposing the Commonwealth of Virginia’s legal challenge to the constitutionality of the new health reform law.

People with disabilities are often denied health coverage because of their pre‐existing conditions. Developmental disabilities, such as intellectual disability, autism, Down syndrome, and cerebral palsy, originate in childhood and constitute pre‐existing conditions for purposes of access to health insurance coverage. Without the new health care reforms, these disabilities can mean the loss of health coverage, resulting in economic hardship and bankruptcy for a family, and huge uncompensated care costs for the system, which will be borne by those who have coverage.

The recently enacted health reform law, Patient Protection and Affordable Care Act (Affordable Care Act), offers people and their families the promise that they will be able to access affordable, nondiscriminatory health care coverage. The Arc believes this helps all Americans and that these protections must remain in place.

“The Patient Protection and Affordable Care Act will finally open the doors to health insurance coverage for many of our constituents. Many of our family members have had vital health coverage denied to them due to their child’s pre‐existing disability. It is disconcerting that litigation to remove this critical protection is already being pursued,” said Peter Berns, CEO of The Arc.

The Arc joined with more than a dozen other advocacy groups in its statement to the courts to protect patients and keep health law intact, including The March of Dimes Foundation, The American Association of People with Disabilities, Breast Cancer Action, Friends of Cancer Research, and the National Women’s Law Center.

Virginia’s Attorney General Kenneth Cuccinelli filed suit against U.S. Department of Health and Human Services Secretary Kathleen Sebelius in the U.S. District Court for the Eastern District of Virginia challenging the constitutionality of the Affordable Care Act. No monetary damages or awards are being sought. Specifically, Virginia challenged the minimum coverage provisions which require that individuals maintain health coverage. Experience in several states has shown that it is necessary to require minimum individual coverage in order to successfully eliminate insurance company use of pre‐existing exclusions for coverage.

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Ann Cameron Caldwell Joins The Arc to Lead Philanthropic & Research Initiatives

/in /by The Arc

Washington, D.C. – Ann Cameron Caldwell, Ph.D., has joined The Arc of the United States as the new Chief Research and Innovations Officer. Dr. Caldwell will be responsible for advancing The Arc’s mission at national and local levels through leading innovative growth and outcome opportunities in partnership with public agencies and philanthropic organizations, and implementing effective organizational metrics and knowledge management practices.

“Ann Cameron is widely respected in the disabilities field; she brings a wealth of experience in forging partnerships with philanthropic organizations, public agencies and others on behalf of people with disabilities. Her background in these areas and in academia will serve to strengthen and support The Arc’s continuing growth and momentum,” said Peter V. Berns, CEO of The Arc.

Prior to joining The Arc, Dr. Caldwell was Assistant Vice President for Grant Development at Easter Seals, Inc., a post she held since early 2007. In this role, she led grant development activities for the national headquarters in federal and foundation arenas, and contributed to the organization’s strategic development and knowledge management efforts.

Previously, Dr. Caldwell was an independent consultant to nonprofit organizations in strategic development and program evaluation. She obtained her doctorate in Disability Studies from the University of Illinois at Chicago in 2005, where she also was project coordinator of the Rehabilitation and Research Training and Technical Assistance Center on Aging with Developmental Disabilities, funded by the National Institute of Disability Rehabilitation Research. Dr. Caldwell received her Master’s degree from The University of Chicago in 2000. She is also the parent of a teenager with Down syndrome.

The Arc is the world’s largest community-based organization of and for people with intellectual and developmental disabilities. It provides an array of services and support for families and individuals and has more than 140,000 members with approximately 730 affiliated state and local chapters across the nation. The Arc is devoted to promoting and improving supports and services for all people with intellectual and developmental disabilities.