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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 Launches Survey on National Disability Needs

/in /by The Arc

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 (I/DD) 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 I/DD, 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 I/DD, 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

/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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Disease and Disability Groups to Hold Media Conference Call on Amicus Brief Supporting Health Reform Law in Virginia Case

/in /by The Arc

Washington, DC – On Thursday, June 17 at 11:00 a.m., leading disease and disabilities advocacy groups are expected to file a formal amicus brief defending the need for the health reform law’s minimum coverage provision being challenged by Attorney General Ken Cuccinelli in Virginia.

The March of Dimes Foundation, The American Association of People with Disabilities, The Arc of the United States, Breast Cancer Action, Families USA, Family Violence Prevention Fund, Friends of Cancer Research, Mental Health America, National Breast Cancer Coalition, National Organization for Rare Disorders, National Patient Advocate Foundation, National Partnership for Women and Families, National Senior Citizens Law Center, National Women’s Law Center, Ovarian Cancer National Alliance, Raising Women’s Voices for the Health Care We Need, and United Cerebral Palsy have all signed on to the brief, which is expected to be filed in the United States District Court for the Eastern District of Virginia on Thursday.

Representatives from these groups will hold a media conference call to discuss the brief and the necessity of standing in opposition of frivolous lawsuits that undermine the new health law’s protections from insurance company abuses on THURSDAY, JUNE 17 at 11:00 am via Teleconference.

Who: Ian Millhiser, Attorney for the Amici; Marty Ford, The Arc of the United States and United Cerebral Palsy; Fran Visco, National Breast Cancer Coalition; Portia Wu, National Partnership for Women & Families; and Chris Jennings, National Organization for Rare Disorders

What: Discussing their opposition to frivolous lawsuits that threaten the minimum coverage provision and the new health law’s protections from insurance company abuses.

When: Thursday, June 17, 11:00 a.m. ET

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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.

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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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The Arc Applauds House Passage of Health Care Reform Legislation

/in /by The Arc

The Arc of the United States applauds the House of Representative’s passage of the historic health care reform legislation that is certain to rank among the top domestic legislative achievements of this generation. “This legislation will bring about comprehensive health care reform that will benefit nearly all Americans while reducing the federal deficit. We are extremely pleased that the Patient Protection and Affordable Health Care Act, passed by the House and Senate, contains numerous provisions of importance to people with intellectual and developmental disabilities,” said Peter V. Berns, CEO of The Arc.

Provisions include:

Coverage

  • Prohibiting private health insurance exclusions for pre-existing conditions.
  • Eliminating annual and lifetime caps in private insurance policies.
  • Restricting the consideration of health status in setting premiums.
  • Expanding Medicaid to cover individuals with incomes up to 133 percent of the federal poverty line (approximately $29,000 per year for a family of four).

Benefits

  • Ensuring that minimum covered benefits include products and services that enable people with disabilities to maintain and improve function, such as rehabilitation and habilitation services and devices.

Access to Quality Care

  • Improving training of physicians, dentists and allied health professionals on how to treat persons with disabilities.
  • Requiring the Centers for Medicare and Medicaid Services to collect data on beneficiaries with disabilities, access to primary care services and the level to which primary care service providers have been trained on disability issues.
  • Ensuring prevention programs include a focus on individuals with disabilities.

Long-Term Services and Supports

  • Increasing the federal share of Medicaid, known as the Federal Medical Assistance Percentage (or FMAP), for home and community-based services (HCBS) and during periods of economic downturn.
  • Allowing states to offer additional services under the 1915(i) Medicaid HCBS Waivers State Plan Option.
  • Providing spousal impoverishment protections for HCBS beneficiaries.
  • Strengthening long-term services and supports through a two-pronged approach:
    • Taking pressure off of the Medicaid program: The Community Living Assistance Services and Supports (CLASS) Act would create a national long-term services insurance program, which assists eligible individuals and their families to meet long-term needs with a cash benefit and without forcing them into poverty to receive Medicaid benefits.
    • Improving the Medicaid program: The Community First Choice Option would help to eliminate the institutional bias by encouraging states to cover personal attendant services under the state’s optional service plan instead of through the waiver system by offering a 6% increase in the federal share of Medicaid for these services.

Cindy Johnson, Chair of the Public Policy Committee of The Arc and a member of its national board said, “People with disabilities—especially young people—can look to a future free from the discrimination of being denied coverage due to preexisting conditions.” Johnson, who is a parent and a sibling to individuals with disabilities, added “this legislation is a relief for families and represents the hope we have that our needs will be met. We are grateful to the advocates and the legislators who fought to have these provisions included.”

The Arc greatly looks forward to President Obama’s expected signing of the Patient Protection and Affordable Care Act (H.R.3590) into law early this week. Enactment of this landmark law will result in the attainment of several of The Arc’s priority public policy goals. “We are hopeful that the subsequent consideration by the Senate this week of the Reconciliation Act of 2010 (H.R. 48772) will also be successful, resulting in fundamental and lasting improvements to the Nation’s health care system,” Berns said.

The Arc urges families with individuals with disabilities to call their congressional representatives who supported this legislation and thank them. To learn more about the impact of health care reform and other legislative priorities impacting people with intellectual and developmental disabilities, register for the Disability Policy Seminar (www.disabilitypolicyseminar.org) from April 12-14, 2010, in Washington, D.C.