The President Signs Rosa’s Law

E-Newsletter Issue Date: Monday, October 11, 2010

On Friday afternoon, President Barack Obama put his pen to work signing the Twenty-First Century Communications and Video Accessibility Act of 2010 into law, delivering brief remarks on the impact of the law on people with disabilities and celebrating Rosa’s Law. The law, which was enacted by the President on Tuesday, substitutes the term “intellectual disabilities” for “mental retardation” in many federal laws.

Self-advocates William Washington (The Arc’s national office receptionist), Jill Egle (Co-Executive Director, The Arc of Northern Virginia) and Jeremy Jacobson (son of The Arc’s Chief Development and Marketing Officer Trudy Jacobson) joined Paul Marchand, Director of the Disability Policy Collaboration to represent the intellectual and developmental disability community whose advocacy resulted in this bill.

Nine-year-old Rosa Marcellino, for whom the law was named was in attendance with her family and received a hug from the President. Also in attendance were the bill’s sponsors, key policy leaders and musician Stevie Wonder.

Rosa’s Law was passed by the Senate earlier this year and passed the House in September. Self-advocates and The Arc have led the effort to get the bill enacted 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.

Changes in terminology are another stepping stone toward realizing a more inclusive society. The Arc was instrumental in the passage of Rosa’s Law by galvanizing support across the nation and through vigorous advocacy. “We 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.

The Twenty-First Century Communications and Video Accessibility Act increases accessibility for people with sensory disabilities to modern communications, such as internet access over smart phones. The Arc also advocated strongly for this legislation and celebrates its enactment.

Convention: "A Clear Way Forward"

E-newsletter Issue Date:  Thursday, August 19, 2010

Join us at this year’s Convention where The Arc is showing the way to success for its next 60 years!  Experience the excitement of National Convention at the Hilton Walt Disney World in Florida from November 3 – 6 along with self-advocates, families, caregivers, professionals and volunteers to celebrate all we have done and expect to do in the years ahead.

Register now to join The Arc in Florida before September 17th and take advantage of the early bird special savings!  Orlando is an ideal site to enjoy family fun while taking part in Convention activities.  As one of the world's premier travel destinations, it has a wide variety of theme parks, beaches, events, and more,Need more reasons to register now for Convention? 

  1. Come be a part of the first public reveal of The Arc’s new brand look – this innovative look and feel captures the revitalization, momentum and opportunity for our movement.  Our fresh identity will reenergize us and propel us forward as we work to empower people with I/DD and their families.
  2. Join in The Arc’s 60th Anniversary Celebration hosted by The Arc and The Arc of Florida.  We’ve created an unforgettable evening of dancing, a poolside dinner with a tropical theme and more.
  3. Visit our Exhibit Hall where cutting edge products, programs and services will be showcased.  Join the excitement by participating in our newest challenge and enter to win great prizes!

And this year, Hollywood comes to Convention with the presentation of The Arc’s first Image and Inclusion Award to actors Lauren Potter and Robin Trocki from the hit television show Glee.  The actors, both of whom have Down syndrome, will be honored for their contributions to the positive and accurate portrayal of people with disabilities on the program.

Want to explore Magic Kingdom?  Magic Kingdom theme park, one of 4 Theme Parks in Walt Disney World Resort, captures the enchantment of fairy tales with exciting entertainment, classic attractions, backstage tours and beloved Disney Characters.

See you in Florida!

The Arc Joins With Other Advocates to Protect Patients/Keep Health Law Intact

An amicus brief urging the courts to protect Americans from frivolous lawsuits that would have the effect of undermining protections provided by the nation’s new health care reform legislation was filed last week by the Arc in conjunction with other disability and disease-specific organizations.

The brief was filed in the U.S. District Court for the Eastern District of Virginia in response to a Virginia lawsuit (Virginia v. Sebelius).  The lawsuit, advocacy groups say, would weaken health reform’s protection against discrimination based on pre-existing medical conditions.

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.

The Arc was a key force in the passage of health reform law and supports the goals of the Patient Protection and Affordable Care Act (Affordable Care Act).  This legislation offers individuals and their families the promise that they will be able to access affordable, non-discriminatory health care coverage.

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.

In all, 17 groups signed the statement to the courts to protect patients and keep health care intact, including The March of Dimes Foundation, The American Association of People with Disabilities, Breast Cancer Action and the National Women’s Law Center.

500 Advocates for Disability Rights in Washington, D.C.

E-newsletter Issue Date:  Wednesday, April 28, 2010

In case you missed the 2010 Disability Policy Seminar, Working Together for a Future that Works, over 500 advocates for disability rights gathered in Washington, D.C. to hear from government officials, policy experts, advocates and others. Jeffrey Crowley, Director, Office of National AIDS Policy and Senior Advisor on Disability in the White House, addressed those gathered saying that health care reform is a major advancement for disability policy. Crowley’s remarks kicked off an entire day focused on health care reform.

On the second day of the seminar, attendees heard presentations on employment, education, housing and the ABLE Act. The ABLE Act of 2009 (Achieving a Better Life Experience) would give individuals with disabilities and/or their families access to savings accounts that would allow individual choice and control while protecting eligibility for Medicaid, SSI, and other important federal benefits for people with disabilities.

The issue briefings and plenary sessions provided critical information on key issues for attendees going to Capitol Hill to meet their representatives.  Among those who went to Capitol Hill was Leo Berggreen, Past President of The Arc and a member of The Arc of Baton Rouge. Berggreen, who lives in Baton Rouge, LA, his wife Madeline and their son Robert met with Congressman Charles Melancon (D-LA) and Congressman Bill Cassidy (R-LA).

In a letter to The Arc, Berggreen wrote, “It went extremely well in both sessions. As we know, our best advocates are self advocates. Robert stole Melancon’s heart and the Congressman insisted on having a picture taken with him. Both Congressmen said that the ABLE Act and the Modernization of Disability Terms were legislation with which they could agree and Congressman Melancon agreed to co-sponsor both.”

The seminar, now in its 34th year, was presented by The Arc of the United States, United Cerebral Palsy, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, National Association of Councils on Developmental Disabilities, and Self Advocates Becoming Empowered.

Be Part of the Action of The Arc!

E-newsletter Issue Date:  Thursday, February 25, 2010

Welcome to the first edition of The Arc’s E-newsletter for members, volunteers, employees, activists, friends, and supporters of The Arc and everyone interested in our movement.

As The Arc celebrates our 60-year history, we can look to the many successes we have achieved.  Our advocacy initiatives such as recent hate crime legislation, shaping the health care debate and addressing years-long waiting lists for supports and services has made it possible for people with intellectual and developmental disabilities (I/DD) to live, work and fully participate in their community. 

In recent weeks, The Arc has been at the forefront in speaking out on the issue of the ”R-word”.   An invitation to The Arc to join a meeting at the White House to discuss the issue resulted in widespread national media coverage from The New York Times, Washington Post, MSNBC, ABC and more. Read more on The Arc’s advocacy efforts on Rosa’s Law and the protection of the civil rights of our constituency in this, our first issue of our E-newsletter.     

We are launching this new E-publication to enhance and grow our ability to communicate directly with you.   It will be published electronically six times a year along with another print companion piece that will be published four times a year by The Arc.  The print publication will be mailed to members only, and also be available on our website.

We believe sharing news of current trends, employment and housing victories, legislation, events, people in the news, self-advocate profiles, spotlights on supporters and members, and more will connect you to everyone working around the country to create a better present and future for people with I/DD and their families. So enjoy reading about the inspiring action around the nation and don’t forget—Be a Part of the Progress, The Arc is more important than ever!

-Peter V. Berns
Chief Executive Officer