What’s Your Definition of Autism?

Young Child With AutismAs you may know, a new edition of the Diagnostic Statistical Manual (DSM) is coming out in May with changes to the definitions of certain disorders on the autism spectrum which is used by medical professionals, government agencies and insurers. There has been much talk about what this will mean to individuals and their families when it comes to obtaining a diagnosis and receiving services. But during Autism Awareness Month in April, The Arc and Autism NOW would like to refocus the conversation on the individuals living with autism day to day and ask: “What’s Your Definition of Autism?” What does the word “autism” really mean to you on a personal and individual level?

This April, we invite you to join us in raising awareness about what autism really means. Here’s how YOU can participate in furthering the conversation during Autism Awareness Month – be sure to jump in with your thoughts and feelings on what the definition of autism is to you and share with everyone you know using the hashtag #AutismAware:

Follow Autism NOW on Facebook and Twitter

Follow The Arc on Facebook and Twitter

Join The Arc’s online community

Read The Arc’s blog

Sign up to receive Autism NOW’s Prism e-newsletter

Join the Autism NOW forums

Forward Motion…The Arc Audi Racing Program Expands in 2013

The Arc Audi RacecarThe Arc Audi Racing Program kicks off our second season at the Pirelli World Challenge Series at the St. Petersburg Grand Prix in Florida March 23.

Although car owner and driver Don Istook will be sidelined for this particular race, The Arc Audi Racing team will still be at the track to host 20 individuals with intellectual and developmental disabilities, support staff and chapter staff from UPARC, a chapter of The Arc in the St. Pete area.

These individuals will serve as “honorary pit crew” members for a day and get hands-on in the paddock with drivers and crews as they prepare for the races and then get to cheer on their favorites as they compete for points in the Pirelli World Challenge Series. And The Arc will be working to raise awareness among race fans and the media of the valuable contributions people with I/DD can make if given a chance. Check out this video from award-winning documentary filmmaker Heidi Reinberg, who captured the excitement of the program in Sonoma, CA last year.

Team owner Don Istook and his wife Laurie share The Arc’s commitment to ensuring that people with I/DD are fully included, especially when it comes to employment opportunities. Laurie’s brother, Mark Hiett, was diagnosed with Fragile X, but that has not stopped him from working as an integral part of Don’s RS Werkes race team. Don and Laurie wanted to give other people with I/DD a taste of what it might be like to be part of a fast-paced race crew and came to The Arc with a unique idea to include individuals in the excitement of race day as the team moves from town to town to compete in the Pirelli World Challenge Series.

Follow The Arc Audi Racing Program as we take yet another exciting ride with Don and his team. The program has expanded to include 9 races with chapters of The Arc in 5 states plus Toronto, Canada, where we will be partnering with Inclusion International to bring Canadian guests to the track. The Arc’s national office will be posting updates from the races on Facebook, Twitter and their blog in the coming months. And you can see the races live online and on later broadcast by NBC Sports (full broadcast schedule).

News from the Social Security Administration

Social Security Commissioner Michael J. Astrue shared with The Arc the following note regarding a welcome change in terminology in the Administration’s Listing of Impairments.

I am pleased to inform you that today we put on public display at the Office of the Federal Register a Notice of Proposed Rule Making (NPRM) to replace the term “mental retardation” with “intellectual disability” in our Listing of Impairments and in other appropriate sections of our rules.

Many of you have rightfully asserted that the term “mental retardation” has negative connotations, has become offensive to many people, and often results in misunderstandings about the nature of the disorder and those who have it.  Partly in response to these concerns, Congress passed Rosa’s Law, which changed references to “mental retardation” in specified Federal laws to “intellectual disability,” and references to “a mentally retarded individual” to “an individual with an intellectual disability.”  While Rosa’s Law did not require us to make any changes to our existing regulations, we are doing so in the spirit of the law and to join other agencies and organizations who are adopting the term “intellectual disability.”

Beginning Monday, you can view the NPRM online at www.regulations.gov.

Thank you for your continued support and cooperation with the Social Security Administration as we work to serve the needs of the American public.

Michael J. Astrue
Commissioner

January 25 Is EITC Awareness Day

Friday, January 25, 2013 is the Seventh Annual Earned Income Tax Credit (EITC) Awareness Day. Do you know if you are eligible for this important tax credit? The IRS is reaching out to underserved taxpayers such as people with intellectual and developmental disabilities to make sure they are aware of the credit and how to claim it. The EITC can increase federal income tax refunds from $1 to more than $5,891, depending on individual circumstances which can include workers with disabilities and workers in non-traditional situations such as grandparents raising grandchildren. You can find out more about the Earned Income Tax Credit at EITC Central, a special website set up by the IRS.

Be a presenter at this year’s convention!

We are currently seeking proposals for innovative, motivating, and interactive presentations for our 2013 National Convention in Bellevue, Washington. Next year’s theme “Achieving Momentum” reflects The Arc’s continuing progress and forward movement. Each year, we are growing not only as an organization but as a grassroots movement working in communities across the country to promote our mission. Utilizing new technologies and innovative programs, we are extending our reach and more importantly making more of an impact.

The Arc encourages proposals that reflect our core values, involve people with intellectual and developmental disabilities (I/DD), family members, advocates and/or professionals, and/or provide opportunities for participants to walk away with a vision and concrete plan for action.

As we continue to achieve momentum in all we do as an organization, we have specific topics we want to discuss during next year’s convention:

  • Technology: Presentations/Sessions that introduce and/or educate individuals about how technology can improve the lives of individuals with I/DD by assisting them in school, work, recreational activities, and facilitate better inclusion in their communities either through assistive technology, online educational tools or better communications and operations systems for more effective delivery of services.
  • Family Support: Presentations/Sessions that demonstrate creative supports for family members as they work to help promote their loved ones’ full inclusion in the community. This can include community activities or groups, programs, community tools or online resources that can be utilized by family members to assist them with advocating for their family members, communicating with their family members and each other, planning for the future and accessing services and supports.
  • Chapter Innovations: Presentations/Sessions that demonstrate innovative programming or initiatives of chapters of The Arc or collaborations with community partners which are propelling the intellectual and developmental disability community forward, either by providing innovative avenues for inclusion, increased competitive employment, better and/or more efficient services and supports, or the development of innovative leadership, collaboration, fundraising/friend-raising, or operational activities that can serve as best practice examples for other nonprofit organizations.
  • Growing the Grassroots: Presentations/Sessions that demonstrate progressive and impactful advocacy for people with intellectual and developmental disabilities at the local, state, regional or national level through the development and mobilization of a strong grassroots advocacy community.

Please keep in mind that concurrent sessions will be held between August 2-4, 2013. As a presenter, you must be available on these dates. We encourage self-advocate participation in all sessions as participants and presenters. Submit your application using this form.

The deadline for submission of presentation ideas is February 1, 2013. Selection of presentations will take place on or about March 29, 2013. Please contact Laurie Edson, Director of Chapter Excellence: edson@thearc.org if you have any questions.

Generous Donor Offers Matching Gift

Donate Now!

Good news! A generous donor and long-time supporter of The Arc, Quincy Abbott, offered to match any donation you may make by the end of the year up to $2500. That means that we have an opportunity to double our impact on the lives of people with intellectual and developmental disabilities with your help! Know that any amount you give by December 31, 2012 will be matched dollar for dollar by this benefactor and that money will go toward fulfilling The Arc’s goals to promote and protect the rights of people with I/DD to live, learn, work and play as valued and contributing members of their communities. Every dollar counts – donate today!.

The Arc’s Statement on the Tragedy in Newtown, Connecticut

“On behalf of The Arc and the families we represent, our thoughts and prayers are with the families of these children and their teachers in this horrific tragedy.  Our hearts are simply broken for the parents, loved ones, and the community of Newtown.

“There are so many questions surrounding this tragedy.  As more information comes to light, the media is reporting that the individual responsible for this violence may have Asperger’s Syndrome, a diagnosis on the autism spectrum.  As we struggle with this tragedy, it is important that the public is aware that people with autism spectrum disorders are not more likely than others to be violent.    This is a horrific event in our nation’s history, and as we mourn, we must come together as a nation to support this Connecticut community.”

Media inquiries can be sent to Kristen McKiernan, mckiernan@thearc.org

Do You Want to be a Presenter at Next Year’s Convention?

Did you have a great time at convention this year but leave wishing you could have participated in a bigger way? Well you are in luck because we are currently seeking proposals for innovative, motivating, and interactive presentations for our 2013 National Convention in Bellevue, Washington. Next year’s theme “Achieving Momentum” reflects The Arc’s continuing progress and forward movement. Each year, we are growing not only as an organization but as a grassroots movement working in communities across the country to promote our mission. Utilizing new technologies and innovative programs, we are extending our reach and more importantly making more of an impact.

Please keep in mind that concurrent sessions will be held between August 2-4, 2013. As a presenter, you must be available on these dates. We encourage self-advocate participation in all sessions as participants and presenters. Submit your application using this form.

The deadline for submission of presentation ideas is February 1, 2013. Selection of presentations will take place on or about March 29, 2013.

Meet Martha

Martha and Nancy Webster

Martha and Nancy Webster at The Arc’s National Convention and International Forum in October 2012.

We’d like you to meet Martha. Why? Because we just can’t get enough of her infectious smile and positive personality. Martha has an intellectual and developmental disability (I/DD), but thanks to the support she receives from her family and programs such as Medicaid and Social Security, her disability has never held her back. She enjoys baseball and bowling and lives independently in an apartment in Indiana with her friends. She thinks everyone with I/DD should have a chance to do the same.

“People should be able to live like I do,” Martha states confidently…with a smile.

Maybe you know someone like Martha….or like Nancy Webster, her concerned sister?  Nancy was recently elected president of the board of directors of The Arc, the nation’s largest community-based organization advocating for people with I/DD. But long before Nancy was a part of our movement, she was Martha’s sister.

Help raise $2,013 for 2013

Nancy recently told us: “Like many sisters, I worry that if Martha’s Medicaid lifeline is cut, her only option would be to live in an institution or somewhere else she doesn’t want to be, in order to receive the services she needs such as income support, help with her health care needs and the basic assistance she requires on a daily basis.”

The Arc has accomplished a lot during the past year in helping to protect the Medicaid lifeline that Martha depends on, but there is much more to do in 2013. Your support ensures that The Arc can continue to connect families to our national chapter network, influence public policy and improve systems of support and services to people with I/DD on a daily basis.

In the remaining few weeks of 2012, we have a modest goal: to raise 2013 for 2013. How the numbers add up is up to you. If you can spare $20.13, great! If you can donate $2,013, wow! Even if you can’t spare a dime but would like to stay connected on Facebook, you can help us get to 2,013 new fans by liking and sharing our page with your friends and family. Every little bit helps, not just for Martha but the more than 8 million Americans with I/DD and their families. Remember what Martha says, that everyone “should be able to live like I do!”

The Arc in Hurricane Sandy’s Path

In the last few days, all eyes have turned to Hurricane Sandy’s destruction of large portions of the U.S. East Coast. In the wake of the storm, affected areas will now begin to reassess, recover and rebuild.

We are reaching out to chapters in the 13 states most affected by the storm to find out how they and the people they serve fared. If you are with an affected chapter and need help, please contact Dee Dee Eberle, Director of Chapter Organizing and Advocacy, at Eberle@thearc.org or 202-534-3726. Or you can reach out via our social media channels – Twitter, Facebook and The Arc’s blog. Please use the hashtag #TheArcRelief for any storm-recovery related posts.

Those of us lucky enough to have escaped unharmed may be looking for ways to help chapters recover and rebuild to ensure that they can continue to serve people with intellectual and developmental disabilities especially in this time of need. We have activated The Arc’s Disaster Relief Fund, which allows us to take in donations from across the country, and quickly distribute them to chapters that need emergency resources to carry out their mission in the aftermath. If you would like to help people with intellectual and developmental disabilities and their families recover and rebuild chapter programs and offices, consider contributing to The Arc’s Disaster Relief Fund: Donate online now or simply send a check to The Arc’s national office at 1825 K Street NW, Suite 1200 Washington, D.C., addressed to The Arc Disaster Relief Fund. If you can’t make a monetary donation, we encourage you to monitor our social media channels to see if someone in your area posts a need which you might be able to fill directly. If you have non-cash resources that might be able to help a specific person or chapter, you can offer those to that individual or organization through our social media channels using the hashtag #TheArcRelief and be sure to post your location and how someone might respond to you. Keep in mind, The Arc CANNOT accept or distribute any non-cash donations.

As we learn more, we will keep you updated via our social media channels – Twitter, Facebook, The Arc’s main blog, and our new chapter blog, wearethearc.org, which chapters across our network can use to keep current with each other.