Blue Beanie Day 2011: Celebrating Web Standards

Blue Beanie Day 2011 with Logo

Blue Beanie Day 2011, celebrated by The Arc's web crew: Kevin Wenzel and David Kennedy.

Today, The Arc’s web team donned blue beanies. Kevin Wenzel (The Arc’s web producer) and I got a few strange looks, even after he sent out a staff-wide email explaining why web designers and developers everywhere put on blue beanies today.

Colleagues keep asking us and we’ll keep telling them why. We support web standards and the hats signify that we’ll follow that set of best practices for standardized, accessible, universal web design and development.

In the past 18 months, The Arc has made a lot of progress toward doing a better job embracing web standards. We redesigned our main website, rolled out three new blogs and launched two additional sites – keeping web standards in mind from the very beginning. Right now, we’re working hard toward making small tweaks on the back-end of our sites that will make a big difference when it comes to web standards and web accessibility. We’ll share more on that as we move forward.

In the meantime, at least you know why web staffers everywhere are wearing blue beanies, and why Kevin and I look a bit like lumberjacks today.

Hammer Travel and Becky Meet The Big Apple

The Arc and Hammer Travel have had a long standing friendship and partnership working for a common cause. For the last few years Hammer Travel has even been the exclusive travel sponsor for The Arc’s national convention.

Through this partnership, The Arc and Hammer have helped a number of individuals with intellectual and developmental disabilities travel and pursue dreams that otherwise would have seemed unattainable. A particularly moving story is Becky Wilkinson’s journey to New York.

Group shot at Central Park with Becky and Hammer Travel

Group shot at Central Park with Becky and Hammer Travel.

Becky, 27, always dreamed of traveling to New York City. Unfortunately, living with Cerebral Palsy and Arthrogryposis makes traveling a challenge both physically and financially for Becky and her family. Luckily, Susan Wilkinson, Becky’s mom, was forwarded an email from The Arc of The United States highlighting Troy, an individual with an electric wheelchair, who had recently gone on a trip with Hammer Travel.

After contacting Hammer Travel to learn more about ways to make travel accessible for individuals like her Becky, Susan had new hope. She soon started a fundraiser to get the $2,220 needed for the trip. Susan even emailed an array of celebrities in hopes of finding someone interested in helping Becky.  Finally, her work paid off when Rory Albanese, a comedian and executive producer of The Daily Show with Jon Stewart, offered to donate the outstanding balance needed for the trip. In an even more generous gesture, Rory asked for Becky’s itinerary and offered a personal tour of The Daily show studio.

Jon Stewart with Hammer Traveler’s Becky and Michael

Jon Stewart with Hammer Traveler’s Becky and Michael.

This past October, Becky’s dream came true as she joined five other individuals with intellectual and developmental disabilities on a trip to New York City with Hammer Travel. While in New York, Becky and the group viewed a taping of the Today Show, met the hosts, visited the Statue of Liberty, Top of the Rock and Rockefeller Center, Central Park and the Guggenheim Museum. One of the most exciting parts of the trip was a VIP taping of The Daily Show with Jon Stewart, where Becky was able to meet Rory Albanese and thank him for funding her trip to New York. The entire group was able to meet John Stewart after the taping as well.

Becky and Rory

Becky and Rory on the Daily Show set.

More photos available in a Facebook album.

Video available above with an extended version on Hammer Travel’s YouTube channel.

Becky’s story is a reminder that dreams can come true. We thank Hammer Travel for their work to make this dream a reality and welcome your stories as well!

Tuning In

Old RadioThese days, there’s a lot of talking going on. In the disability world, if you turn the radio dial, you can switch the stations from diagnosis, early intervention, and how to manage the new identity of being a family connected to a child with an intellectual and developmental disability. A few clicks up and the voices are talking about friends, inclusion, transition, and a few words on jobs and post-secondary education. Self-advocacy is heard, in some coverage areas. Turn the dial even further and words about community living, placements, institutions, sheltered workshops, supported jobs and community-based employment fade in and out. Futures planning, special needs trusts, and what to do now that Mom and Dad are old themselves. Siblings. Family support. And through it all, you hear: where are the resources to help us…

In the middle of the audible voices is a lot of static. White noise relating, perhaps, to the day-to-day survival, the daze of home to school to work to home to family in any given day; the disconnect between that and the sharp always unanticipated disruption of when the supports fall away. In some places, there is no noise at all.

The Arc is Listening

I wonder who is listening. I wonder what families are going to do.

The answer comes to me: The Arc is listening. The Arc helps families help themselves, as we’ve been doing for more than 61 years. From the listening sessions at our Annual Convention where people were given open access to a microphone in front of the Board, to hear what they wanted to say…. To our Autism NOW Center that reflects an array of information resources for people with autism and other developmental disabilities and their families… to the opportunities we give to the nation to get families involved in advocacy, in membership, participation or leadership at local, state and national levels, in working with us to advance better options for people with I/DD and their families. Our 50 Chapters that are involved in designing customized School to Transition Programs to help young adults adapt to life after high school. Through all of these, there is a listening process occurring, and we are collectively learning from all of you. Only if we listen, can we learn and grow. Only if others express their thoughts, their preferences, will there be something to learn from and something to share.

Get Involved

The Arc has always been about supporting families, and supporting those they are connected to: people with intellectual and developmental disabilities. If you are a family member and haven’t gotten involved in The Arc, think about it. If you’ve thought about creating a new Chapter, go for it. Yes, YOU. If you’ve thought about honoring us with your time, we’d love to have you with us. Now, more than ever, tuning in and getting involved in the dialogue is so important; our country is going through monumental changes that have every possibility of affecting the daily options that we have to choose from.

We’re here. We’re listening. Tune in, wherever you are, any place on the dial.

Reaction from The Arc on The Super Committee Not Reaching a Deal

Washington, DC – As the nation’s largest organization working on behalf of people with intellectual and developmental disabilities (I/DD), The Arc’s CEO Peter V. Berns released the following statement on today’s announcement that Members of the Joint Select Committee on Deficit Reduction have not reached a deal to reduce the nation’s deficit by at least $1.2 trillion over 10 years.

“Throughout the Committee’s process, The Arc advocated for protecting Medicaid, Medicare and Social Security because the budget cannot be balanced on the backs of people with disabilities. It is disappointing that the Committee could not come to an agreement that would have protected these critical programs while ensuring significant revenues were part of the solution. Unfortunately, no deal at the moment leaves lots of unknowns for the rest of the programs on which people with disabilities rely on to live independent lives.

“The Arc believes we must strengthen the economy while protecting the lifelines of people with disabilities, and to honor that commitment, bring in sufficient revenues to provide necessary services. We appreciate Members of Congress who stood their ground and opposed deep cuts to Medicaid, Medicare and Social Security.

“We recognize that this was a missed opportunity, when Members of Congress could have worked across party lines and found a solution to a deficit and revenue problem facing us all – young and old, people with disabilities and without, wealthy and poor. It will take a true bipartisan effort to ensure a secure future for people with disabilities, the elderly, and low income people. Individuals with disabilities, their families, and the professionals who support them will continue to monitor the budget process and advocate for their lifeline.”

Some Thoughts from Tyler Smothers on his Recent Trip to Washington, DC

The Smothers Family

The Smothers Family: Tyler Smother, Cindy Smothers, Jay Smothers and Josh Smothers – visit The Arc's National Office. Tyler Smothers won The Arc's Achieve with us Contest, held last summer.

Winning The Arc’s “Achieve with us” contest was such an exciting experience for me. As if winning wasn’t enough, part of the prize was a trip to Washington, DC to meet with members of the Iowa Congressional Delegation and The Arc’s national office.

Tyler Smothers and Peter V. Berns

Tyler Smothers, and The Arc's CEO Peter Berns, at The Arc's national office during Tyler's visit to Washington, DC. Tyler Smothers is The Arc's Achieve with us Contest winner.

Arriving in DC was a thrill, but even better was getting to The Arc’s office! I loved the banner that said “Welcome Tyler” when we got there. I was also given a bag with The Arc logo and other neat stuff, like The Arc vest that I was able to wear for part of my trip (The Arc’s CEO, Peter Berns was even wearing his vest when we met!). I thought meeting the Arc staff was great and everyone was very friendly, I really enjoyed meeting William Washington, The Arc’s receptionist!

My first day was busy with meeting the national staff and then a trip to The Holocaust Museum. We walked to lots of memorials and I liked the pretty sites. I loved the hotel and it even had a gift shop!

Senator Tom Harkin and Tyler Smothers

Tyler Smothers, The Arc's Achieve with us Contest winner, meets with Iowa Senator Tom Harkin with his mom, Cindy Smothers.

The next day I visited Capitol Hill to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack. I thought the Senators and Representative were friendly. I told them about my services and supports in Cedar Rapids and why they are important to me. I told them about winning the Arc’s “Achieve with us” contest and doing a fundraiser for the last 4 years now and raising over $40,000. My mom got to talk to them too about not cutting Medicaid and why that would be bad for so many people like me. Congressman Loebsack’s staff even gave me a personal tour of the U.S. Capitol. I loved the Capitol and getting the tour and seeing all the neat stuff there, like lots of big statues.

On my last day in DC, my family and I were given a tour of the White House. It was a shame that President Obama was busy, but I enjoyed the tour of the White House and going on the elevator in the White House kitchen with the Secret Service and my dad.

I thought the trip was great and fantastic. I loved taking the metro to the airport and riding in the accessible taxi to get to the Hill. The whole trip was a blast and I am sharing pictures with all my friends

Thank you for all that The Arc does for me, my family, and people like me all over the country.

An Update on Eliza – “Why Not Me?”

Eliza Schaaf Artwork image

Eliza Schaaf works on one of her projects.

Readers of The Arc’s blog might remember Eliza Schaaf, the college student with Down syndrome who was removed from her art class at Southern Oregon University just a few hours shy of completion last year because school officials determined that she did not meet academic standards for participating.

Eliza, her family, fellow students and others in the community petitioned the school to allow her to finish the course, but ultimately they declined. Eliza’s family started a blog for her detailing her experiences and allowing others to express support for her. Throughout the spring and summer of 2011, Eliza asked the school to address the issue of her exclusion and garnered support in the form of a petition signed by all of her classmates and a resolution passed by the school’s Student Senate. Although the school eventually did revise some of their policies, they would not respond to Eliza directly.

Although Eliza was disappointed by the outcome of that situation, she has moved on to bigger and better things! Students from Chapman University filmed a documentary about Eliza’s experiences. The film, called “Hold My Hand,” is currently screening at film festivals across the country and will be aired on Southern California Public Television. And, now Eliza is on a speaking tour advocating for inclusion at colleges and universities. In addition to being invited to participate on the keynote panel at the State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities at George Mason University in Virginia, she has conducted workshops with SOU and Chapman University Students and it taking her “Why Not Me?” presentation to a variety of conferences in hopes of creating change in the way postsecondary educational institutions work to include students with intellectual and developmental disabilities. Find out more about what Eliza has been up to on her blog at www.elizaschaaf.com.

The Arc Supports Members of Congress in Unveiling Legislation to Give Families Greater Financial Flexibility for Loved Ones with a Disability

Washington, DC – Today, The Arc of the United States joined Congressman Ander Crenshaw (R-FL), Senator Robert Casey (D-PA), Congresswoman Cathy McMorris Rodgers (R-WA), and  disability organizations to unveil the “Achieving a Better Life Experience Act of 2011” (ABLE Act) at the U.S. Capitol.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation. By creating ABLE accounts, this bill would let families plan and save secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities that will supplement, but not replace, benefits provided through private insurances, the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  Instead of penalizing people with disabilities whose families are able to set aside some funds to allow them to be more independent in life down the road, the ABLE Act provides new opportunities and breaks down barriers for people with intellectual and developmental disabilities (I/DD).

“The ABLE Act is about giving people with intellectual and developmental disabilities the opportunity to achieve their dreams.  Families are looking for ways to finance things like an apartment, or a ride to work, or additional educational opportunities after high school that don’t jeopardize other necessary services provided by federal programs.  This bill creates a tool for families that could lead to a more independent and fulfilling life,” said Peter V. Berns, CEO of The Arc.

Berns spoke at a press conference on Capitol Hill and highlighted some of the important benefits for individuals with I/DD and their families. Members of the National Down Syndrome Society, Autism Speaks, and other organizations were also on hand to support the cause.

Berns referenced a young man named Geoffrey Mikol, who is a senior at Walt Whitman High School in Bethesda, Maryland.  After Geoffrey graduates, he would like to work in the community, perhaps in the paleontology field.  But in order to fulfill that dream, his mom will need to find ways to make it happen, saving additional dollars for training and transportation, and making sure she can financially plan and save for unforeseeable needs in Geoffrey’s future.

“Right now, there could be too many obstacles in Geoffrey’s way, forcing him to be unemployed and isolated.  The ABLE Act will remove barriers for people like Geoffrey, who shouldn’t have to abandon his dream of working in his community simply because of the logistics necessary to make it happen.  We allow this type of savings for the future of our children without disabilities – this just gives the same opportunity to people with disabilities,” said Berns.

Victims with FASD Highlighted in Academic Journal

Journal of Psychiatry & Law

Many people don’t know about FASD (Fetal Alcohol Spectrum Disorder) or how common it is in the U.S. because it often goes undetected or is misdiagnosed. Similarly, most don’t realize that people with disabilities are more likely to be victims of crime compared to those without disabilities. A new, groundbreaking double issue of the Journal of Psychiatry and Law regarding people with FASD in the criminal justice system is bringing these two “underground” worlds of FASD and victimization together to be dissected and studied under one theoretical roof.

As The Arc’s Project and Information Specialist and an expert on these issues, I had the exciting opportunity to contribute to this issue! Speaking to experts in a wide array of victimization, disability and legal fields served to broaden my own perspective of how to best serve this population, and the co-authors I worked with had a similar experience. I am equally thrilled to be attending a press conference in Washington, D.C. on November 17 hosted by the National Organization on Fetal Alcohol Syndrome (NOFAS) to announce the release of this unique special issue. After the press conference NOFAS is coordinating an “FASD & The Law” policy luncheon to prioritize policy recommendation in the justice arena and develop an action plan after which they will videotape interviews with professionals and experts on the topic. Those video interviews will be available soon on the NOFAS website and possibly distributed via The Arc.

Even though a high percentage of incarcerated juveniles and adults have symptoms of FASD, many lawyers, judges and mental health professionals don’t know much about it so it continues to go unrecognized. This special issue of Journal of Psychiatry and Law helps raise awareness of the serious needs of people with FASD, and gives advocates concrete information that helps them serve victims with an FASD more confidently and compassionately.

Training is a critical tool used to educate parents, self-advocates, victim assistance agencies, court personnel and others about serving crime victims with an FASD. As a follow up to the press conference, experts will offer a free training in the Washington, D.C. area to help practitioners know how to look for red flags that identify individuals with Fetal Alcohol Spectrum Disorders (FASD) who are involved in the court system.  It will address why they may have IQ’s above 70 but have low adaptive behavior skills and describe how courts should treat people who have cognitive and neuro-developmental needs, including the importance of knowing how to provide accommodations. If you are interested in learning more about the journal article, press conference or training, please contact me at ldavis@thearc.org.

The Arc Can Help You Ditch That Clunker!

Old White Car

Did you know The Arc takes donations of old vehicles? Not only can you get an old clunker out of your yard, you can earn a tax break for your donation just in time for the upcoming tax preparation season. Best of all, you help The Arc continue on its mission to advocate for and serve people with intellectual and developmental disabilities.

It sounds like a win-win situation, but I know what you’re thinking….all the paperwork and hassles with the IRS, ugh! Don’t worry, we’ll take care of all of that. The Arc has partnered with the Melwood Charity Car Donation Center to make it as easy as possible for you to donate an old vehicle to The Arc. Simply go online to donate your car or call toll-free 1-877-272-2270 Monday through Saturday and give their friendly operators some basic information and they’ll arrange for FREE towing of your vehicle. And, they’ll process all of the necessary paperwork you need to claim your deduction and mail you a Non-Cash Charitable Contributions form within 4-6 weeks. Many of our chapters across the country participate in The Arc’s Vehicle Donation Program – if your local chapter is participating, you can designate that your donation benefit them. Simply ask the operator or choose your local chapter as the beneficiary when you donate online.

Donate today or find out more about how the program works on our website. And, check out the useful  Donors Guide to Vehicle Donations from the IRS to help you maximize your deduction. You won’t have to worry about the hassle of trying to repair, advertise to sell or attempting to junk your old car yourself. Just one call or click and we’ll take care of it for you!