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.

Raising Awareness of Williams Syndrome

by Mike McFall, Williams Syndrome Association

In 2010, the Williams Syndrome Association designated the 1st full week in May as “Williams Syndrome Awareness Week.”  In the years since, the number of awareness events for Williams syndrome held annually has grown tremendously, and this year, Congressman Jim Moran (D-VA) will introduce a resolution in Congress (H-Res 194) in recognition of the entire month of May as Williams syndrome Awareness month.  What do you know about Williams syndrome?

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical and cognitive problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing.  Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech, physical and occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers, and abstract reasoning, which can make daily tasks a challenge. The majority of adults with WS need supportive housing to live to their fullest potential.  Many adults with WS contribute to their communities as volunteers or paid employees working at senior homes and libraries or as store greeters or veterinary aides, but few are able to work a “full-time” job, or earn a large enough salary to be self-sustaining.

Opportunities for social interaction are vitally important as well. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression and increased anxiety.  Individuals are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often do not process nuanced social cues and this makes it difficult to form lasting relationships.

Common features of Williams syndrome include:

  • Cardiovascular Disorders
  • Kidney & Gastro-intestinal Disorders
  • Similar Facial Features
  • Developmental Delays
  • Learning Disabilities
  • Hypercalcemia (elevated blood calcium levels)
  • Anxiety
  • Low birth-weight / slow weight gain
  • Feeding problems
  • Dental abnormalities
  • Hernias
  • Hyperacusis (sensitive hearing)
  • Musculoskeletal problems

This May, thousands of children and adults are expected to join the Williams Syndrome Association (WSA) to raise awareness for Williams syndrome (WS) by holding events including nearly 50 walks in cities across the U.S. including New York, St. Louis, Detroit, San Diego and Houston. Get a complete list of events and find out more about the efforts to raise awareness at walk4williams.org. And, you can find out more about Williams syndrome at williams-syndrome.org.

You’re Invited to Achieve Momentum at The Arc’s National Convention

2013 National ConventionWhat does it take to achieve momentum in your life, in your work, and in the movement for people with intellectual and developmental disabilities?

Join The Arc for a National Convention filled with innovative ways to help you do just that – new information, new programs, new technol­ogy, and new ways for you to keep moving forward toward your goals! Register now to attend the premiere event for the intellectual and developmental disability movement in Bellevue, Washington just outside of Seattle August 3-5 and join hundreds of other individuals, families, advocates, experts and professionals in the field for three days of informative sessions, unique events and opportunities to connect. Here are just a few reasons to make your reservations now:

  • Cutting-edge technology demonstrations – discover the latest technology innovations from organizations like Verizon, Microsoft and more – and examples of creative ways chapters of The Arc are using assistive technology.
  • Dozens of sessions focused on supporting self-advocacy, cultural diversity, building our grassroots network, using technol­ogy and innovations in family support.
  • A vibrant Marketplace with goods and services catering to you including The Arc Store and Entrepreneur Alley which spotlights microbusinesses run by individuals with I/DD.
  • Meet-and-greet events just for self-advocates and siblings hosted by The Arc’s National Council of Self Advocates and National Sibling Council.
  • Red Hot on the Red Carpet and The Arc & Sprout National Film Festival – we’re bringing back a crowd favorite from 2012 and rolling out the red carpet again as a lead in to our always popular film festival featuring shorts for, by and about people with I/DD.
  • A Night of Laughter and Dance: an opening night event from our local host with live entertainment from Jet City Improv and two local bands with self-advocate musicians.

And, if you book before July 5, you can take advantage of registration discounts and special room rates at the Hyatt Regency Bellevue on Seattle’s East Side. See you there!

Special Thanks to Our Sponsors: CARF, Essential Learning, Hammer Travel, Marsh, MediSked, MetLife, and Rest Assured

Running With A Purpose

Jonathan Brunot

Photo courtesy of Verlaine Brunot

This is a guest blog post from Verlaine Brunot, whose brother Jonathan will be completing the Boston Marathon this Monday in honor of Autism Awareness Month. It will be his 9th Marathon overall and his 5th time completing the Boston Marathon.

By Verlaine Brunot, Guest Blogger

My name is Verlaine Brunot and I would like to share with you all a story about the power of perseverance, dedication and willpower.  This is a story about my youngest brother Jonathan.  Jonathan is severely autistic.

Jonathan Brunot was born on March 14, 1989; a healthy child with an expressive personality.  He had lots of eye contact, and his vocabulary built steadily as he began to learn to speak.  However, when he was about 2 ½ years of age, he began to regress dramatically.  His eye contact became non-existent and the few words and even phrases he had mastered in the previous months slipped away into completely non-verbal interaction.  Jonathan would later be diagnosed as severely autistic, a prognosis that meant he could never develop “typical” brain function for his age.

Just. Like. That.

Autism is a lifelong, pervasive disorder.   However, no matter how difficult the circumstances; an autistic person is only limited by the limits we put upon them.

Case in point, our amazing mother. She always taught us that Jonathan wasn’t merely an “autistic” individual, but rather we were an “autistic” family.  It was incumbent upon us as a family to do whatever we could to help Jonathan navigate through this difficult world.

That is why throughout Jonathan’s adolescence; my mother contacted many different special needs programs to enroll Jonathan in as many extracurricular activities as possible.  Since Jonathan wasn’t capable of telling us what new things he wanted to try, we effectively had to “throw him in the deep end” so to speak and immerse him in EVERYTHING.

We signed him up for a bowling league, took him to horseback riding, as well as registered him for a special needs basketball league.  These activities gave Jonathan an outlet in order to expend all his energy as well as to help him assimilate “normal” activities like his older siblings.  Jonathan was not always enthusiastic or attentive during some of these activities; however our mother was still determined to at least give him as much exposure as possible to these different environments.  It was precisely this determination and persistence that prompted my mother to have Jonathan join a special needs running club called ROLLING THUNDER.  The selfless volunteer coaches at Rolling Thunder specialized in assisted running with the mentally disabled and they welcomed Jonathan with open arms.

When Jonathan first joined the running club, he struggled tremendously.  For the first couple of weeks, Jon could not run more then 10-15 yard without stopping, or getting distracted or wanting to lie down.  In fact, Olga began running side by side with Jonathan, at times gripping his belt and effectively pulling him along the trails.  Even after 2 months of practices, Jonathan was still not really grasping the concept of running.  Olga was nearly ready to have him quit, both as a result of her fatigue from constantly pulling him and Jonathan’s inability to connect with the sport.  The leader of Rolling Thunder, Steve Cuomo, encouraged Olga to not give up on Jonathan and worked with her to help Jonathan continue running.  That led to the fateful day when Mr. Cuomo introduced Olga to a running coach named Vincent Delcid.

Over the upcoming months, Vincent was able to teach Jonathan to pace himself, and stretch, as well as how to approach hills and to sprint at the finish line.  Over time, Jonathan developed a great “coach – athlete” relationship with Vincent during their runs and really began to embrace the sport.

After several months of running, coach Vincent  REALLY upped the ante.  He could see that Jonathan was really enjoying their runs and was getting faster and faster by the day.  Coach Vincent told us that he wanted Jonathan to run the NYC Marathon. Yes, THE NYC MARATHON.  26.2 long, difficult miles across all the boroughs of Manhattan!

To me, this seemed initially like an OUTRAGEOUS,  INSANE, EXTRAORDINARY goal to set for Jonathan; but at the very same time there was no way we could doubt the determination of coach Vincent.  Between Coach Vincent and Olga, Jonathan had a support system that could NEVER fail.

On November 2, 2008 Jonathan completed his first marathon in 4 hours and 48 grueling minutes (ING NYC Marathon 2008) and he has hit the ground running ever since!

My youngest brother Jonathan has evolved into a gifted runner and a tremendous athlete. He’s an amazingly inspiring marathon runner who shows me strength and courage everyday… and oh yea, he happens to be autistic.

The proudest older brother in the whole world,

Verlaine Brunot

You can track Jonathan’s progress via the Athlete Alert text system.
Text RUNNER to 345678
Wait for a confirmation text message.
Reply to the confirmation text message with Jon’s bib number 20973
You will be signed up.

Eight Former Commissioners of Social Security Voice Support for Disability Programs, Concerns with High Profile Series on NPR

In the aftermath of a series recently aired on This American Life, All Things Considered, and National Public Radio (NPR) stations across the U.S. (“Unfit for Work: The Startling Rise of Disability in America”), eight former Commissioners of the Social Security Administration (SSA) released an open letter in support of the Social Security disability programs.  The former Commissioners also raised concerns with how the series characterized the programs, stating:  “We are deeply concerned that the series ‘Unfit for Work’ failed to tell the whole story and perpetuated dangerous myths about the Social Security disability programs and the people helped by this vital system.  We fear that listeners may come away with an incorrect impression of the program—as opposed to an understanding of the program actually based on facts.

“As former Commissioners of the agency, we could not sit on the sidelines and witness this one perspective on the disability programs threaten to pull the rug out from under millions of people with severe disabilities.”

The letter was signed by:

  • Kenneth S. Apfel
  • Michael J. Astrue
  • Jo Anne B. Barnhart
  • Shirley S. Chater
  • Herbert R. Doggette
  • Louis D. Enoff
  • Larry G. Massanari
  • Lawrence H. Thompson

Read the full letter here.

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.