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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 (I/DD) 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 I/DD 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 (I/DD) 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 I/DD 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 (I/DD) and their families is engaging military families connected to individuals with I/DD 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 I/DD, 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

/in /by The Arc

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 Participates in Amicus Brief in Virginia v. Sebelius Case

/in /by The Arc

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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The Arc of the United States Announces 45 Sub‐Grant Awards for Transitioning Youth From School to Adult Life, Funded by the Walmart Foundation

/in /by The Arc

Washington, D.C. – Thanks to a $3 million grant from the Walmart Foundation, The Arc of the United States (The Arc) is awarding grants to 45 local chapters of The Arc across the U.S. in support of a new initiative designed to help youth with intellectual and developmental disabilities.

These sub‐grants are being awarded as part of the Walmart Foundation School‐to‐Community Transition Project. The project aims to increase transition outcomes and to build inclusion and involvement of youth with intellectual and developmental disabilities in independent living, employment, post‐secondary education or vocational training, and community, social, and civic affairs.

“The sub‐grants for the Walmart Foundation School‐to‐Community Transition represent dynamic, new, and innovative projects of chapters of The Arc. They will set a high standard in best practices for youth to adult transition initiatives for years to come,” said Peter V. Berns, Chief Executive Officer of The Arc.

“The Walmart Foundation is committed to improving the lives of people with disabilities and ensuring they have opportunities to live better,” said Margaret McKenna, president of the Walmart Foundation. “Our recent grant to The Arc reinforces our commitment by supporting programs of The Arc across America.”

The following chapters of The Arc are recipients of these sub‐grants:

Arc Chapter/Affiliate State Executive Director / CEO
The Arc of Shelby Co. AL Karen H. Stokes
The Arc of Southeast Los Angeles Co. CA Kevin P. MacDonald
The Arc of San Francisco CA Timothy Hornbecker
The Arc of Ventura Co. CA Fred Robinson
The Arc of Colorado CO Marijo Rymer
WeCAHR CT Shirley Ricart
STAR, Inc. CT Katie Banzhaf
The Arc of the District of Columbia DC Mary Lou Meccariello
The Arc of Jacksonville FL Jim Whittaker
The Arc in Hawaii HI Michael Tamanha
The Arc of Rock Island County IL Kyle Rick
Community Support Services IL Gaye Preston
Seguin Services IL John Voit
Achieva Resources IN Dan Stewart
Evansville Arc IN Deidra R. Conner
The Arc of Kentucky KY Patty Dempsey
The Arc of Greater New Orleans LA Cliff Doescher
The Arc of Baton Rouge LA Barry Meyer
The Arc of Massachusetts MA Leo V. Sarkissian
Northeast Arc MA Gerard L. McCarthy
The Arc of Frederick Co. MD Joanna Pierson
The Arc of Prince George’s Co. MD Jack Ramsey
The Arc Downriver MI Kevin P. McGuckin
The Arc of Kent Co. MI Tammy Finn
The Arc of Northwest Wayne Co. MI Christine A. Lerchen
The Arc of the Greater Twin Cities MN Kim Keprios
The Arc of St. Louis MO Kathy Meath
The Arc of Mississippi MS Matt Nalker
The Arc of Haywood County NC Holly Lemieux
The Arc of Wake Co. NC Steven R. Strom
The Arc of Nebraska NE Marla Fischer‐Lempke
The Arc of Gloucester NJ Ana Rivera
The Arc of Monmouth NJ Mary Scott
The Arc of New Mexico NM Randy Costales
AHRC – New York City NY Michael Goldfarb
NYSARC ‐ Rensselaer NY Hanns Meissner
NYSARC – The Arc of Oneida‐Lewis NY Angela Z. VanDerhoof
The Arc of Oregon OR Marcie Ingledue
The Arc of Philadelphia PA Bruce Hulick
The Arc of York Co. PA Gregory D. Knox
The Arc of Tennessee TN Carries Hobbs Guiden
The Arc of Davidson Co. TN Norman Tenenbaum
The Arc of Northern Virginia VA Nancy Mercer
The Arc of Washington State WA Sue Elliott
The Arc of Clark Co. WA Jesse L. Dunn
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Letter From The Arc to Rush Limbaugh: Meet With Us

/in /by The Arc

February 5, 2010

Mr. Rush Limbaugh
1270 Avenue of the Americas, 9th Fl.
New York, NY 10020

Dear Mr. Limbaugh:

I am writing on behalf of The Arc of the United States (The Arc), the oldest and largest national nonprofit organization that advocates on behalf of and serves people with intellectual and developmental disabilities. With over 730 chapters nationwide, The Arc is committed to the full inclusion and participation of people with disabilities in all aspects of community life.

Earlier this week, on behalf of The Arc, I participated in a frank discussion with White House Chief of Staff, Rahm Emanuel, regarding comments he made that offended our constituency. On the same day, you engaged in extensive commentary about that meeting, as well as the events surrounding it, using the same offensive language.

I am inviting you to meet personally with a group of individuals with intellectual and developmental disabilities, their parents, and siblings to engage in an open and honest dialogue regarding the language you used in your recent commentary. We would like to provide you the opportunity to hear, first hand, why people with intellectual and developmental disabilities believe the words “retard” and “retarded” and similar phrases need to be removed from common use.

Self-advocates, parents, disability rights activists, and others are rightly concerned that your comments simply serve to further degrade and denigrate the 7 million individuals with intellectual and developmental disabilities who struggle on a daily basis to be included in society. We believe that a face to face meeting to discuss these concerns and share the personal impact on these individuals would go far in informing you and your listeners.

I cannot understate the effect of a word many consider an epithet – it is deeply offensive to people that are living with intellectual disabilities, and the tens of millions of their parents, siblings, family members, and friends. It is a harsh reminder of the institutionalization, sterilization, abuse, discrimination, violence, and exclusion they have faced, and continue to face, as they merely seek to live typical lives.

I invite you to meet with a group of people with intellectual disabilities and their families in a city of your choosing – New York, Washington, DC, or another location. I look forward to a favorable reply.

Sincerely,

Peter V. Berns
Chief Executive Officer

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The Arc Invited to White House Meeting on the “R-word”

/in /by The Arc

Washington, D.C. – The Arc of the United States (The Arc) has been invited to join a meeting at the White House today with other disabilities rights advocates to discuss the controversy around White House Chief of Staff Rahm Emanuel’s use of the “R-word.”

Peter V. Berns, Chief Executive Officer of The Arc, wrote a letter to Rahm Emanuel pressing for White House support of Rosa’s Law. This legislation would change the term “mental retardation” or “mentally retarded” to “intellectual disabilities” in several federal statutes such as education and employment laws.

Who: Peter V. Berns, Chief Executive Officer of The Arc; Andy Imparato, American Association of People with Disabilities; Hannah Jacobs, parent; Julie Petty, self-advocate; Tim Shriver, Special Olympics; and Ricardo Thornton, self-advocate.

What: Meeting with disabilities advocates to discuss Chief of Staff’s use of the “R-word.”

When: Wednesday, February 3, 2010 at 2:00 p.m.