Happy Birthday Social Security!

Social Security CardsThis week marks the 78th anniversary of our nation’s Social Security system. At The Arc, we know that Social Security is a lifeline for over 9.6 million beneficiaries with disabilities, including many people with intellectual and developmental disabilities (I/DD).

Social Security improves our lives in so many ways. It provides basic economic security for workers and their families – including children and spouses with disabilities –  when a worker retires, dies, or acquires a significant disability. It helps people with disabilities who work all their lives enjoy a secure retirement. And it provides access to health insurance through Medicare, enabling many people with disabilities to get the medical care they need to survive and live in the community.

Social Security covers nearly all Americans, or an estimated 163 million workers. In comparison, 70 percent of private sector workers has no long-term disability insurance, 50 percent has no private pension, and 34 percent has no savings set aside for retirement.

It’s hard to imagine what would happen without Social Security. Benefits are modest, averaging about $1,100 to $1,200 per month, but go a long way in reducing poverty among beneficiaries with disabilities and their families. Many people with disabilities tell us that even a small cut in their Social Security benefits would mean facing terrible choices, like whether to take a prescribed medication or buy groceries.

The Arc knows how important it is to preserve Social Security. Over the last year, we’ve been on the front lines, speaking out against proposals like the chained CPI that would cut Social Security benefits and providing in-depth analysis.  The Arc also has many recommendations for strengthening Social Security so that the system works better for people with disabilities and stays financially strong for decades to come.

Please join us in making sure this vital protection is there for people with I/DD and their families! For more information about Social Security, or to apply for benefits, visit http://www.ssa.gov.

Social Security Administration Erases the “R-Word”

This week marks a great victory for people with disabilities across the United States.  The Social Security Administration (SSA) announced that it will no longer use the term “mental retardation” and will instead use “intellectual disability” in its official Listing of Impairments and other regulations. SSA started this process in January, and their decision brings us one step closer to a policy world free of the R-word.

This victory comes less than three years after President Obama signed Rosa’s Law, which substituted the stigmatizing word with the terms “intellectual disability” and “individual with an intellectual disability” in federal health, education, and labor policy statutes. The thousands of advocates who have spent decades working in the disability policy field know that change like this doesn’t come quickly or easily. However, once SSA decided to make a change, the agency was able to move from the initial public notice of proposed rulemaking to the final rule in just eight months.

SSA’s decision to use modern, respectful terminology will affect millions of children and adults with intellectual disability who over the course of their lives may need Social Security or Supplemental Security Income (SSI). It’s important to remember that this change will not alter who qualifies for benefits. SSA’s use of “intellectual disability” will not change whether an applicant will qualify for benefits, nor will it change current benefits for people who originally qualified for Social Security disability or SSI benefits with a diagnosis of “mental retardation.”

SSA’s announcement is all the more remarkable because SSA takes this step voluntarily. Rosa’s Law did not include Social Security or SSI, but SSA is making this change because it’s the right thing to do. The Arc and many other disability groups commented in support of this proposed change, which SSA first proposed in January 2013.

We know how powerful words are.  As Rosa Marcellino’s brother Nick said, “What you call people is how you treat them.” Words represent you and your viewpoint, and we can all be happy that SSA is taking a step to change the words being used in their official documents to better promote the civil rights of individuals with I/DD.  The R-word isn’t just a word, it is a stigmatizing term that the disability community has been fighting against for years, and this week we are a step closer to banishing it from our government and our society.

Happy Birthday ADA!

This week marks the 23rd anniversary of the passage of the Americans with Disabilities Act (ADA).  Signed by President George H. W. Bush in 1990, the ADA is the most important civil rights law for Americans with disabilities.  The ADA has increased physical access to all kinds of stores, government buildings, and offices.  In the work place, we are seeing more people who have disabilities working alongside their colleagues who do not have disabilities.  At large conferences, it is routine now to see interpreters for the deaf and hard of hearing and Braille documents for people who are blind or have visual impairments.

For people with intellectual and developmental disabilities (I/DD), the ADA has meant having the right to receive services in the most integrated setting appropriate.  Many people with I/DD have been able to leave large, segregated institutions and move into homes in communities.  We have seen a huge increase in home and community-based services and a steady decline in the number of people living in institutions over the past 23 years.

But, we still have more to do.  Too many people are on long waiting lists for community-based services and supports and are at risk of having to go into an institution.  Too many people who want a home of their own are still living in large congregate settings.  And, too many people with I/DD are living in nursing homes.  Far too many individuals with disabilities want to work but are unemployed.

While many barriers to full participation in society remain, let’s take a minute to celebrate the many positive changes that have been brought about by the ADA!

Here’s what some people and groups are saying about the ADA on this anniversary:

Autism NOW’s Co-Director Receives National Honor

Amy GoodmanEarlier this month, Amy Goodman, Co-Director of the Autism NOW Center, received the Outstanding Advocate of the Year award from The Autism Society of America. This comes as no surprise to The Arc’s national staff who work with Amy on a daily basis. Her passion for what she does is present in every task she undertakes.  The Autism NOW Center wouldn’t be the success it is without Amy’s dedication. You can view Amy at work answering questions in The Autism NOW Answer Series.

Read in Amy’s own words why winning this award is so important to her:

This award means a lot to me because it is proof that all my hard work and dedication to my profession has paid off and that individuals do appreciate me. It stands as a testament that what I do makes a difference in the lives of individuals with autism. I am so lucky to be able to share my life with those in need and I feel proud to be able to say I’m an individual with autism who has paved the way for others to enjoy life to the fullest extent.

This award is not only for me personally but to be shared with all my colleagues at The Arc, my friends and colleagues at The Autism Society of America, Robert Hunter of The Grateful Dead for enabling my brother to make a connection with Kent Moreno, who told us about Asperger’s syndrome in the first place, and all my friends and colleagues at Marshall University and the College Support program because if it were not for all their support and encouragement I would not be where I am today. I owe it all to them.

I may not move mountains by myself, but I can advocate and give others a voice they may not know they even have. This award has validated my life for me and I now know I am where I need to be and that I will survive in this world. It has given me a sense of self-worth and the confidence to know I can achieve or accomplish things above and beyond what others said I would never do.

Where Have You Been, Barbara Walters?

Barbara WaltersBy Mohan Mehra, Immediate Past President, The Arc of the United States Board of Directors, and Brian’s dad. Brian is a young man with Down syndrome.

Last week, Barbara Walters used her platform on “The View” to defend comedian Bill Maher when he used the “R” word to describe Sarah Palin’s five year old son, Trig, who has Down syndrome.  You can watch the clip on YouTube.

“I don’t think he intended to be mean spirited,” said Ms. Walters. Of course he did. Hiding behind jokes often becomes a form of bullying. We see it in schools, on the playing field, and in the media when celebrities who have a large platform like Mr. Maher are looking for a laugh or attention.

To excuse Maher due to possible “ignorance of the language” is unacceptable. He is a public figure, seeks the limelight in his public and private actions, and pleading ignorance does not fit his outspoken style. Where have you been, Bill Maher and Barbara Walters?

Historically, the “R” word was a clinical term used to describe people with an intellectual disability. Today, society uses it as an insult or to degrade people with intellectual disabilities. A recent survey of youth age 8-18 done by Special Olympics and the University of Massachusetts showed that 63% said that they felt bad for the person being picked on and only 9% of the youth said that they laughed or did not care. Where have you been, Barbara Walters?

In 2010, both houses of Congress unanimously passed, and the President signed Rosa’s Law, a bill that removes the “R” word from all federal health, education and labor policy and replaces it with “intellectual disability.” Nick, Rosa’s eleven year old brother said during the hearings, “What you call my sister is how you will treat her…. It invites taunting, stigma and bullying.” Words are mere vessels for meaning. Where have you been, Barbara Walters?

In our culture, the media enjoys a special status. With over 3 million viewers of “The View”, and a large following on social media, Ms. Walters has a large platform to inform and educate, in addition to entertain. It would indeed be fitting that in the memory of her sister, Jackie, who had an intellectual disability, she calls out such use of the “R’” word as hurtful and insulting to people with intellectual disabilities and their families.

Top Technology Companies Coming to Convention

Dan Hubbell

Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group

Verizon and Microsoft will be joining The Arc at our National Convention August 3-5 in Bellevue, Washington for a program focused on technology, innovation and Achieving Momentum in the movement for people with intellectual and developmental disabilities.

Convention attendees will hear from Jack P. McArtney, Director, Corporate & Community Responsibility; Global Corporate Citizenship Group of Verizon, Inc. who will kick off a technology-focused plenary session with thoughts on the new role of corporate social responsibility as a technology company.  And, Dan Hubbell, Sr. Marketing Manager for Microsoft’s Accessibility Group will speak about the newest assistive technology for individuals with disabilities.  Known as the Technical Evangelist for the Accessibility Business Unit at Microsoft, Dan is sure to infect all with his enthusiasm for innovation when it comes to making life better for people with I/DD.  Both men will participate in a panel discussion giving you an opportunity to ask your most pressing technology questions and capping off a Convention full of information and inspiration.

In addition to these noted speakers, this year’s Convention features demonstrations of cutting-edge assistive technology, breakout sessions on cloud computing, tablets and applications, visual story-telling, transitioning to a paperless office and more technology topics. This year’s Convention is shaping up to be a don’t-miss event with the addition of Verizon and Microsoft to an already stimulating program featuring acclaimed author Buzz Bissinger and sessions on innovations in family support, cultural diversity, building our grassroots movement and more.

Check out the full schedule and register now! Be sure to book your room at the Hyatt Regency Bellevue before July 2 and take advantage of early registration discounts before July 5, but there’s still time to save.

National Convention Preconference Dedicated to Self Advocacy

Joe Meadours at ConventionThe Arc’s annual National Convention kicks off August 3 with a preconference dedicated to fostering self-advocacy among people with intellectual and developmental disabilities. Join us on Seattle’s East Side for “Oh, the Possibilities: Self-Advocates as Leaders in Your Community”  hosted by The National Council of Self-Advocates of The Arc.

We will explore the all of the possibilities for self-advocate leaders in the community with training on effective communication, networking, building leadership skills, developing funding for self-advocacy group startups, and a demonstration of Self-Advocacy Online, a website dedicated to the self-advocacy movement. Don’t miss a special presentation of the history of the disability movement and civil rights and an art activity to get the crowd going as well.

Register now! A separate preconference registration is required in addition to your Convention registration but is only $15 for self-advocates! And, take advantage of early bird discounts on Convention registration when you sign up before July 5! Get the full Convention schedule and check out the other special events we have planned at www.thearc.org/convention.

Red Hot on the Red Carpet Returns to Convention in 2013

Red Hot on the Red CarpetFor those of you who attended The Arc’s 2012 National Convention in Washington, D.C., you may remember the “Red Hot on the Red Carpet” event leading up to The Arc & Sprout National Film Festival. Convention attendees had a chance to walk the “red carpet,” pose for paparazzi photos and even be interviewed by The Arc’s version of Ryan Seacrest.

Just take a look at these pictures of everyone hamming it up with feather boas, Hollywood-style sunglasses and their own “Academy Awards.” It was an evening to remember and such a popular part of that year’s festivities that we’re bringing it back for an encore.

The Arc’s National Convention in Bellevue, Washington (on Seattle’s East Side) this August 3-5 will again feature a “Red Hot on the Red Carpet” event. And, we will again treat attendees to a screening of short films by, about and for people with intellectual and developmental disabilities at The Arc & Sprout National Film Festival.  Don’t miss this special evening of fun to cap off three full days of innovative and enlightening sessions at this annual gathering of the I/DD community.

We’re expecting 700 or more individuals with I/DD, family members, professionals in the field and staff from The Arc’s chapter network along with special guest, acclaimed author Buzz Bissinger. Sessions will focus on technology, advocacy and public policy, supporting families, employment and more. Plus there are two pre-conferences dedicated to self-advocacy and leadership. Check out the full schedule and register now at www.thearc.org/convention. Take advantage of early bird discounted rates when you register before July 5.

Talking About Inclusive Education

Inclusive Class podcastAmy Goodman, Co-Director of the Autism NOW National Autism Resource and Information Center, will join The Inclusive Class Podcast on Friday, May 17 at 9:00 a.m. EST for a 30-minute chat about inclusive education for students with autism and other developmental disabilities.

The Inclusive Class is hosted by Nicole Eredics, founder of the online resource, The Inclusive Class and Terri Mauro, author of 50 Ways to Support Your Child’s Special Education and The Everything Parent’s Guide to Sensory Integration Disorder.  Nicole is an elementary educator who has spent over 15 years teaching in an inclusive classroom setting creating and discovering solutions for integrating students with special needs in the classroom.  Terri Mauro is one of the most recognized experts on special education and special needs parenting on the Internet.

Tune in for Amy’s unique perspective as a person who identifies as being on the autism spectrum on Blog Talk Radio on May 17. Also, you can access the podcast after it airs on Blog Talk Radio, on iTunes and on The Inclusive Class website.

Autism NOW is a project of The Arc funded in part by the Administration on Intellectual and Developmental Disabilities and was created to provide quality, vetted information and resources for individuals on the autism spectrum and with other developmental disabilities.

There’s a Buzz Building around The Arc’s National Convention

Buzz Bissinger and son Zach

Buzz Bissinger with son Zach

Planning is well underway for The Arc’s annual National Convention August 3-5 outside of Seattle, WA. And we’re already starting to hear a buzz about the program we have planned for you this year. People are starting to talk about our keynote speaker, Buzz Bissinger.

The excitement is building to have such a noted best-selling author (Three Nights in August, Friday Night Lights) speak to The Arc about his latest book. But Buzz Bissinger is not just a celebrity, he’s a parent. His sons Zach and Gerry were born prematurely in 1983 and Zach was born with significant intellectual disabilities. Recently, Buzz set out to document his special relationship with Zach in the book Father’s Day: A Journey into the Mind & Heart of My Extraordinary Son. The story revolves around a cross-country road trip Buzz planned to revisit all of the places they had been together during Zach’s life. During the trip, Zach ultimately teaches Buzz a vital lesson: character transcends intellect. Buzz comes to realize that Zach’s approach to life, while different, has a sturdy logic that deserves to be respected.

Father’s Day will resonate with any parent who has a child that is “different.” And all parents will recognize themselves in Buzz as he wrestles with the questions that tug at every mother and father as their children grow up. The Arc’s National Convention is your chance to hear Buzz’s perspective on what it means to be a parent of a child with I/DD so make plans now to join us in August. Find out more about the full program, other planned special events and register today at www.thearc.org/convention.