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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 (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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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

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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.

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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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Joint Statement of Disability Leaders

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Julie Petty, Ricardo Thornton, Hannah Jacobs, Andy Imparato, Peter Berns, and Tim Shriver

We came here today to meet with Rahm Emanuel and share with him our views on the importance and impact of language. We wanted to invite Mr. Emanuel and all of America to understand the collective efforts of our community to remove the words “retard” and “retarded” from every day speech.

The “R-word” is polluting our language. Every day our community hears this word – in schools and workplaces, in print and movies, and on radio and television. And every day they suffer its dehumanizing effects: mockery, stigma, and ridicule. This is a word that is incredibly damaging, not only to the seven million people with intellectual disabilities, but also to their friends, family, and to all of us.

We are thankful to Mr. Emanuel for meeting with us today and hearing our concerns. He sincerely apologized for his mistake and the pain it caused in our community.

We are happy that he will join more than 54,000 other Americans in pledging to end the use of the “R-word” at www.r-word.org and that he committed that the administration would continue to look for ways to partner with us, including examining pending legislation in Congress to remove the “R-word” from federal law.

Our community has earned the right to be respected instead of ridiculed. We have suffered injustice for generations and we are demanding that it end.

This is another small step on the road to a country that accepts the gifts of all.

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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.

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The Arc Condemns White House Aide’s Use of “R-Word”

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Washington, DC–Reports that White House Chief of Staff Rahm Emanuel used an epithet relating to people with intellectual and developmental disabilities is both shocking and disappointing.

According to a Wall Street Journal story on an embattled White House, “Some attendees said they were planning to air ads attacking conservative Democrats who were balking at Mr. Obama’s health care overhaul. “F—ing retarded,” Mr. Emanuel scolded the group, according to several participants. We hope that the Members of Congress in that meeting were equally offended.

This is the second serious verbal miscue by the Administration about people with intellectual and developmental disabilities. President Obama’s unfortunate statement last year on The Tonight Show with Jay Leno, equating his poor bowling performance with that of people with intellectual disabilities, sparked justifiable outrage from people with intellectual and developmental disabilities and their families. The President subsequently apologized for his remarks and disability advocates saw it as a teachable moment. Mr. Emanuel’s use of hateful language would suggest that it is the White House staff that needs to be taught a lesson in respect for people with disabilities.

Statements such as these—particularly when used by someone at a high level—amplify pervasive societal attitudes that people with intellectual and developmental disabilities somehow don’t measure up or that their lives are worth less. “Using a slur about people with intellectual disabilities to criticize other people just isn’t right,” said Peter V. Berns, Chief Executive Officer of The Arc of the United States. “For people with disabilities, it is disrespectful and demeaning and only serves to marginalize a constituency that already struggles for empowerment on every front,” Berns added.

Disability rights advocates had high hopes for this Administration when the President appointed a Special Assistant to the President for Disability Policy. This was a move that the Administration called, “Our first step to ensure that we have a strong advocate for people with disabilities at the highest levels of our Administration.”

The more than seven million individuals with intellectual and developmental disabilities and their families demand an apology for Mr. Emanuel’s use of language that denigrates our constituency. The White House needs to lead by example and demonstrate through words and actions that it is not acceptable to use people with disabilities as a source for ridicule. To condone this language is to deny opportunities for people with disabilities in the workplace, in the community, in school, and in every other quarter of society.

The Arc of the United States strongly supports legislation (S.2781) introduced by Sen. Barbara Mikulski of Maryland that would change the term “mental retardation” or “mentally retarded” to “intellectual disabilities.” Given the two White House incidents of inappropriate use of the term regarding these constituencies, The Arc hopes that the Obama Administration will put its full force behind the enactment of this legislation.