Does Speaking Up Make a Difference?

In the current political climate, it’s easy to become frustrated and start thinking that your voice doesn’t count. But we’re here to tell you that when you advocate for people with intellectual and developmental disabilities, your voice is heard. It does count. And, we have proof.

Every year hundreds of advocates like you come together on Capitol Hill for the annual Disability Policy Seminar for three days. For the first two days of the seminar, you hear from disability policy experts and other advocates about the most pressing issues facing the I/DD community this year. Then, on the third day, you take the Hill by storm with your fellow advocates and personally meet with your Senators and Representatives, including members of key committees that control the legislation you want to see passed or defeated. We have done some research and discovered that at least for the past few years, Congressional sponsorship of crucial bills important to the I/DD community increased in the months immediately following the annual seminar.

So, what issues were discussed during those meetings? What bills were pushed? That was up to you. All we know is, after your visits, many of those Senators and Representatives seemed to suddenly decide to co-sponsor bills to positively impact the lives of people with I/DD.  And, many of those bills were subsequently passed into law. Maybe it was coincidence. We think it was because of you.

The 2011 Disability Policy Seminar is February 14-16 and early registration ends January 11. Are you registered yet?

Here’s to the Bright New Year

Happ New Year 2011 image

The Arc’s been on a roll this year and everything we’ve accomplished in 2010 has given us momentum in moving full steam ahead in 2011.

Just as we have for the last sixty years, The Arc continues to create opportunity and make incredible things happen. Even in the midst of tough times, we’ve seen our chapters around the country help to create better lives for people with intellectual and developmental disabilities (I/DD).

  • Institutions have closed with all the former members now living in the community;
  • Children with I/DD are finding support and acceptance in their public schools;
  • Young adults with disabilities are realizing their dream of attending community college with their peers;
  • Proud employees with disabilities are retiring after years of service in the workplace, and more.

On the national level we’re not only proud of the work of our chapters but we’re glad for some victories of 2010, including the following top five:

  1. The Arc was on the frontlines to ensure the passage of Rosa’s Law, removing the derogatory term “mental retardation” from federal laws. We were at the table when a coalition of disabilities rights advocates met with the former White House Chief of Staff about the “r-word.”
  2. The Arc’s advocacy was vital to health care reform – perhaps the most important legislation of our generation. New protections guaranteeing people with disabilities can’t be denied health insurance or have their coverage ended, long-term supports and services and access to quality care are several provisions important to people with I/DD.
  3. The Arc awarded subgrants to 50 chapters 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.
  4. The Arc received a $1.87 million grant from the Administration on Developmental Disabilities to launch Autism NOW, a national information and resource center on Autism Spectrum Disorder (ASD) and other developmental disabilities. This innovative and dynamic initiative is a much needed resource; it’s especially significant that self-advocates will have a meaningful role in leading, implementing and realizing the goals of Autism NOW.
  5. Leaders of The Arc were instrumental in the passage of legislation crucial to our community. A Supportive Housing Bill – the Frank Melville Supportive Housing Investment Act – passed both chambers of Congress last week and President Obama is expected to sign it into law soon. The initiative to provide more housing has been a high priority for chapters of The Arc.

As we say goodbye to the old year and ring in the new, here’s a wish from The Arc:

“Here’s to the bright New Year, and a fond farewell to the old; here’s to the things that are yet to come, and to the memories that we hold.” — Author unknown

Many People with Developmental Disabilities Feel Trapped in Nursing Homes

Imagine feeling like you’re imprisoned just because you have an intellectual or developmental disability (I/DD).

That’s a reality for more than 4,500 people with I/DD in Texas “trapped” in nursing homes providing inadequate care, according to The Arc of Texas and the Coalition of Texans with Disabilities.  The two advocacy groups joined to file a class-action lawsuit against Texas earlier this week in San Antonio along with six individuals with I/DD.

The suit focuses on the approximately 4,500 people with disabilities living in nursing homes in Texas; advocates say that thousands more are at risk of the same fate.

“Many are denied the opportunity to live where they choose,” said Mike Bright, executive director of The Arc of Texas. “In other words, they have been imprisoned simply for having a disability.”

Texas ranks 49th among 50 states in providing community-based services to people with developmental disabilities according to a 2010 report by the Texas Council for Developmental Disabilities.

In The Arc’s fight for inclusion, we’ve argued that most people receive better care in a community-based facility or in their own homes.  By shining a light on this issue, The Arc of Texas has proven our point while improving the lives of thousands.

The Arc and the Autism Society Team on the Autism NOW Center

Autism NOW Logo imageThe Arc and the Autism Society are joining forces on Autism NOW: The National Autism Information and Resource Center – a new and dynamic National Initiative of The Arc funded by the Administration on Developmental Disabilities.

The partnership includes participation on the National Advisory Committee and providing information and referral services through the Autism Society’s AutismSourceTM national contact center. The Autism Society’s chapter network will also be tapped to share information with the broader autism community about the Autism NOW Center’s activities and resources.

The Autism Society has provided information and referral services to the community through AutismSource since 1971. Families can access AutismSource at www.autismsource.org, submit an inquiry through www.autism-society.org/asa_contact or by phone at 1-800-3Autism.

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. To learn about the Center visit http://www.autismnow.org.

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

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. Families can access AutismSource at www.autismsource.org, submit an inquiry through www.autism-society.org/asa_contact or by phone at 1-800-3Autism.

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 http://www.autismnow.org or by contacting TFerguson@AutismNow.org.

Morgan Stanley Smith Barney Recommends The Arc

Morgan Stanley Smith Barney recommended The Arc along with just 19 other national nonprofits to individual investor clients through their Holiday Gift Catalog. That means that high net worth investors (we’re talking millionaires and billionaires) received a beautifully-produced catalog this holiday season containing MSSB’s list of the top twenty organizations deserving of their support. The list is eclectic to say the least, including Doctors Without Borders, The Julliard School and the National Disaster Search Dog Foundation. But, as Douglas Ketterer, MSSB’s Head of U.S. Private Wealth Management says in his introduction to the catalog, “This publication contains a wide assortment of unique gifts and exceptional funding opportunities offered by 20 highly vetted nonprofit organizations.” He goes on to state that each organization was chosen based on an application in which they were asked to illustrate how they fulfill a crucial need that would otherwise go unmet in the community.

We take inclusion in this catalog as a very high compliment – and as a supporter of The Arc, so should you. Members of the intellectual and developmental disability community are all too aware of the crucial needs The Arc meets for individuals with I/DD and their families every day. This wider recognition in MSSBs catalog and promotion to their wealthy and powerful clients can do nothing but help further our mission.

We crafted three unique “gifts” to help those investors connect with The Arc. The catalog recipients will find a special donation page through at button on our home page reflecting our listing in the catalog. All of these gifts relate to direct service programs offered by our chapters, and dollars received from these gifts will be re-granted to chapters. Happy holidays, everyone!

Looking Back, Looking Forward: 2010 Wrap Up

Thank You imageIt’s been an amazing year to be a part of The Arc. The support of people like you has been crucial in furthering our mission to provide hope and opportunity for those with intellectual and developmental disabilities. Looking back on 2010, our 60th anniversary year, we are in awe of what you have helped us accomplish. And, looking forward to 2011, with your continued support, we are poised to accomplish even more.

The Arc works to foster respect and access for individuals with I/DD and their families, giving them the power to achieve full and satisfying lives as valued, contributing members of their communities. In 2010 alone we moved ever closer to our goals through:

  • The passage of Rosa’s Law, removing the derogatory term “mental retardation” from federal laws
  • The establishment of new protections guaranteeing people with disabilities can’t be denied health insurance or have their coverage ended
  • The creation of a new voluntary public insurance program for long-term services and supports to help people live in their own homes, not institutions
  • The development of new criminal penalities for hate crimes against people with disabilities
  • The launch of Walmart Foundation-funded School-to-Community Transition services in 50 U.S. communities

The Arc is determined to build on the progress of 2010 and foster change in 2011 through a huge initiative to provide a strong new brand identity under which all of our 730+ chapters can come together. You’ll find out more about that in your February 2011 E-newsletter just before the national launch of the new brand. In the meantime, we’ll be moving forward with Autism NOW, an information and resource center just established by a $1.87 million grant from the Administration on Developmental Disabilities. And, we’ll be putting to work a large grant from NISH to foster community-based employment opportunities for people with intellectual and developmental disabilities.

Thanks for being a supporter of The Arc. We rely on the generosity and loyalty of friends like you. We hope you will take this opportunity to visit www.thearc.org for more information about ways you can help make a difference for years to come.

Image by Flickr user woodleywonderworks.

Affordable Care Act Vital to People with I/DD

Vigorous advocacy by The Arc and a coalition of disability rights and other champions was crucial to the enactment of the historic health care reform legislation nine months ago. The Patient Protection and Affordable Health Care Act and the Health Care and Education Reconciliation Act of 2010 (together known as the Affordable Care Act) contain numerous provisions of importance to people with intellectual and developmental disabilities (I/DD).

Now, the constitutionality of the Affordable Care Act is being tested. A narrow ruling yesterday in Virginia on the constitutionality of a provision of the Affordable Care Act is one of many recent rulings on similar cases in the past few months.

Opponents of reform have filed more than 20 different legal challenges since the law passed. The Administration’s motion to dismiss 12 of these cases has already been granted by judges. Moreover, in two cases, federal judges looked at the merits of the opponents’ arguments and determined that the Affordable Care Act is constitutional and upheld the law.

Since the health reform law was passed there’s been tremendous progress to strengthen the nation’s health care system. A new patient’s bill of rights has been implemented to end some of the worst insurance company abuses and we are on a path to eliminate discrimination against people with disabilities in health insurance.

It’s vital to our constituency that the courts find the Affordable Care Act constitutional, so that people with I/DD can have access to the following provisions and more:

  • Prohibiting private health insurance exclusions for pre-existing conditions.
  • 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).
  • 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.
  • Improving training of physicians, dentists and allied health professionals on how to treat persons with disabilities.
  • Medicaid Community First Choice Option long term services and supportswith a 6 percent increase in the Federal Medical Assistance Percentage (or FMAP).

A member of The Arc who is a parent and a sibling in Minnesota said, “People with disabilities — especially young people — can look to a future free from the discrimination of being denied coverage due to preexisting conditions. This legislation is a relief for families and represents the hope we have that our needs will be met.”

Read more on Health Care Court Ruling on The White House Blog.

The Arc Announces New Members to Serve on National Board

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 http://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.

Film Company Seeks Families Living with Autism

Television imagePie Town Productions, which has produced television shows for Discovery, TLC and A&E including the Emmy award-winning A Baby Story, is seeking families with multiple children diagnosed with Asperger’s and/or autism. They are planning a documentary-style series to shed light on misconceptions about the disorders.

The company would like to connect with families who have two or more children on the autism spectrum who are under 18 years of age and live at home. Focusing on a family with multiple children with ASD will allow the series to explore how it affects each individual differently. Their stated intent is to follow such a family and produce a thoughtful and respectful series leading to greater understanding and sensitivity about the disorders through the real-life perspectives of the family members featured.

You can find out more about Pie Town Productions at www.pietown.tv. They are currently producing Meat and Potatoes for the Food Network and the family documentary series Downsized for WE. If your family is interested, you can contact Lauri Lannan at 818-255-9277 or lauri_lannan@pietown.tv.

Image by Frecuencia.