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The Arc and UCP Urge Congress to Implement the CLASS Act

/in /by The Arc

Washington, D.C. – The Arc and United Cerebral Palsy (UCP) restate their support for the Community Living Assistance Services and Supports (CLASS) program. Both The Arc and UCP worked hard to support passage of the CLASS Act and support full implementation of the program.

The CLASS program is a new long term care insurance program. It is financed by voluntary payroll deductions and will provide a cash benefit for individuals with functional limitations. CLASS plan benefits can be used for personal care attendants, assistive technology, home accessibility modifications, and other supports and services that help people with disabilities to function in their daily lives.

UCP and The Arc support the CLASS program, in part, due to our concern that individuals and families should not be forced to impoverish themselves to cover the costs of services they or their family members need in the event of disability or advancing age. Long-term services and supports can put enormous strain on both families as well as the federal-state Medicaid program. Both organizations believe it is imperative that the hard-fought CLASS program be fully implemented.

Nearly half of all funding for long term services is now provided through Medicaid, which is a growing burden on states and requires individuals to become and remain poor to receive the help they need. There is also an institutional bias in Medicaid whereby approximately two-thirds of all spending is directed towards nursing homes and other institutions instead of preferred community-based services and supports.

The CLASS program is a national solution to a national problem. The plan should give consumers access to a broad array of support options, including a continuum of home and community-based supportive services. This new system will ultimately relieve pressure on Medicaid. The new system should promote independence and dignity across the lifespan by ensuring beneficiaries the right to control and choose what services they receive, how and where they are delivered, and who provides them.

We are pleased by the renewed attention to the CLASS program brought about by today’s hearing in the House Energy and Commerce Committee’s Health Subcommittee. We urge members of Congress to ensure that the CLASS program is fully implemented as soon as possible so that the working public may begin to participate in the program and insure themselves against future need.

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The Arc to New Hampshire State Rep. Harty: People With Disabilities Are Valued and Achieve

/in /by The Arc

Washington, DC – Comments by State Representative Martin Harty of New Hampshire that “the mentally ill, the retarded, people with physical disabilities…the defective people society would be better off without,” should be shipped to Siberia, harkens back to the darkest days of history for people with intellectual and developmental disabilities when forced institutionalization and sterilization was commonplace.

“Rep. Harty’s remarks are reprehensible and should be condemned by his constituents and colleagues alike. Our society has long ago recognized that people with intellectual and developmental disabilities are part of the fabric of our society with the right to be included and participate in the community,”  said Peter V. Berns, Chief Executive Officer of The Arc.  “While we don’t believe that Rep. Harty views are representative of America’s elected officials, these remarks are especially chilling as budget slashing across the nation threatens the well being of our most vulnerable” Berns added

In 1962, President John F. Kennedy, Jr., sounded a clarion call to bring people with I/DD out of the shadows and into the light and affirmed the fundamental value of people with I/DD and their potential to achieve in every aspect of society.  In the face of Representative Harty’s outrageous behavior, we need to be reminded of that message today.

“People with I/DD can and should lead lives of inclusion and opportunity, realizing their full potential in school, the workplace and throughout the community.  The Arc stands with them as valued, contributing members of their community, and calls on people of good conscience in New Hampshire and nationwide to do the same.” Berns said.

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The Arc Launches Dynamic New National Brand Identity

/in /by The Arc

Washington, D.C. – The Arc, the largest organization advocating for and serving people with intellectual and developmental disabilities (I/DD), including Down syndrome, autism, FASD, cerebral palsy and other diagnoses, is changing its look and adopting a new visual identity. The Arc is joined in the launch of this rebranding initiative by state and local chapters representing more than 30 states.

“This is an exciting time in The Arc’s history,” said Peter V. Berns, CEO of The Arc. Our powerful, new, shared identify reflects the energy and the action of our organization as we work to transform the lives of people with I/DD.  This impactful and fresh identity will move us further in revitalizing The Arc – an organization that has been on the frontlines of advocacy and service for over 60 years –by harnessing the incredible power of those we serve.”

The Arc’s vibrant new logo and tagline communicate the organization’s commitment to promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes. The Arc’s logo is
emblematic of the organization’s embracing nature with the flowing “catalyst” icon; a burst of energy is symbolic of our support of independence. The new tagline, Achieve with us, conveys The Arc as a provider of opportunity, hope, growth and change.

The Arc’s new identity grew out of a lengthy, collaborative effort that began in spring 2008 and has involved literally thousands of The Arc’s volunteer and staff leaders, constituents and other stakeholders to create a visionary plan for the future: The Strategic Framework 2010-2019. A survey of chapters of The Arc demonstrated widespread support to rebrand and create a more compelling vision for The Arc.

The launch of The Arc’s new brand coincides with the commemoration of Developmental Disability Awareness Month in March. Nearly a quarter century ago, The Arc’s advocacy led to President Ronald Reagan officially proclaiming March to be Developmental Disabilities (DD) Awareness Month. Chapters of The Arc across the nation are celebrating DD Awareness Month with special events and activities. Over the past six decades, The Arc has championed groundbreaking legislation that has improved the lives of people with I/DD.

“There is tremendous energy and ‘buzz’ as we begin to implement The Arc’s new brand identity” said Mohan Mehra, Board President of The Arc. “This will help raise public awareness of The Arc and translate to greater support at both the local and national levels. I am especially invested in the new brand and have been involved since the start of the process. Having served as a business manager with Kraft Foods with experience in business strategy, marketing and sales I know that a new brand can make a real difference.”

The Arc selected CoreBrand, an award-winning branding firm, to design and execute the new identity led by Brand Director Jonathan Paisner.  “As a branding consultant, this was the rare opportunity to help discover and unleash a powerful brand simply waiting to be born,” Paisner said.  “A true collective voice –- one shared by and reflected in over 700 chapters – will certainly be a boon to fundraising, volunteerism and visibility in the corporate world. Yet the true impact of a greater national presence will ultimately bring all of these elements together to advance The Arc’s goals of inclusion, hope, opportunity and achievement.”

The look and feel of the new brand will advance further with the May 10, 2011 national announcement of The Arc’s FINDS (Family and Individual Needs for Disability Supports) survey results at the National Press Club in Washington, D.C.  The FINDS survey will yield a candid and current view on issues concerning the needs for disability supports across the lifespan. This unprecedented assessment of data from nearly 6,000 individuals will enable those in the field to better understand what services are available, what gaps exist and what new supports are needed.

Today, across the United States, the 700+ chapters of The Arc share common goals:

  • The Arc is embracing, determined and experienced in promoting and protecting the rights of people with I/DD;
  • The Arc provides key needed services and supports across the arc of a lifetime and across diagnoses, such as Down syndrome, autism and many other intellectual and developmental disabilities.
  • The Arc is banding together around the new and vigorous identity that embodies the energy and movement of The Arc to help people with I/DD feel empowered and included.

“We are thrilled,” Berns added, “that upon the launch today we will have more than 150 of The Arc’s state and local chapters simultaneously unveil The Arc’s new brand identity in communities across the country.  With close to 25% of chapters of The Arc on board already, and more chapters signing on daily, the successful implementation of our new brand strategy is well underway,” Berns explained.

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The Arc and UCP to Create New Policy Operations

/in /by The Arc

Since 2003, the Disability Policy Collaboration (DPC) has been the shared public policy arm of UCP and The Arc. The DPC focuses on federal legislative and regulatory efforts to improve the lives of individuals with disabilities and their families.

Since its inception, the DPC has been a vital force in shaping federal legislation to advance the lives of people with disabilities and, most recently, played a significant role in the passage of Health Care Reform as well as Rosa’s Law.

With the announced retirement of Staff Director Paul Marchand in December 2010, the two organizations began a reassessment of the collaboration to determine the most effective way to engage in advocacy and policy efforts in the future.

Effective April 1, 2011, the DPC will cease and each organization will resume its own public policy program while continuing to join together on select projects as well as actively participate as members of the Consortium for Citizens with Disabilities (CCD).

“We are proud of all that the DPC has accomplished over its eight years, pushing for civil rights protections and public policies that provide support to ensure fair and full citizenship for people with disabilities,” said Stephen Bennett, President and Chief Executive Officer of United Cerebral Palsy. “We look forward to continuing our partnership with The Arc, both as a member of CCD and through shared, targeted projects. We believe that our new approach will only expand the number and strength of advocates striving to create a life without limits for people with disabilities.”

“The efforts of the DPC have had an immeasurable impact on federal legislation and regulatory efforts that improve the lives of people with disabilities and their families,” said Peter V. Berns, CEO of The Arc. “As we move forward, The Arc and UCP will continue to be vigorous advocates for people with disabilities and to create opportunity in every aspect of their lives.”

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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 (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.