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Thoughts From Tyler Smothers on His Recent Trip to Washington, DC

/in /by Guest Blogger

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.

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!

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.

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An Update on Eliza: “Why Not Me?”

/in /by Shelly DeButts

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.

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

/in /by The Arc

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 (IDD).

“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 IDD 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.

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Victims With FASD Highlighted in Academic Journal

/in /by Leigh Ann Davis

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, DC 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.

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The Arc Can Help You Ditch That Clunker!

/in /by Shelly DeButts

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!

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Imagine What We Can Do Together

/in /by Shelly DeButts

Do you believe that all people, including those with intellectual and developmental disabilities (IDD) have abilities and value? Do you believe people with IDD have the right to live and work in communities of their choosing? Have you thought about aligning your group with The Arc as a chapter?

The Arc is the largest community-based organization for people with IDD, leading a national movement advocating for and supporting families and individuals with IDD across their lifetimes and across all diagnoses. We believe in self-determination and empowering people with the support they need to make informed decisions and choices about how they live. Do you?

Although we’re a large, national organization with a strong, 60-year history of advocating for people with IDD, our true strength is found within our network of more than 700 chapters across the country. It is people like you working through local organizations who are on the front lines serving and supporting people with IDD and their families. How much more could you do with the power of The Arc behind you?

We’d like to find out. The Arc is now actively seeking organizations to join our chapter network and take advantage of benefits such as strong federal advocacy initiatives, organizational support, a bold national identity, discounts on training and events, access to collaborative fundraising projects, a network of experienced executives offering professional support, and other resources to make the work you do a little easier. Find out more.

P.S. If becoming a Chapter is not your cup of tea, but you still would like to support The Arc, consider becoming an Organizational Member. Explore the benefits.

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A Blueprint for Change

/in /by Shelly DeButts

Earlier this year, The Arc of Indiana embarked on a broad-based campaign to create change in Indiana’s systems for serving people with intellectual and developmental disabilities (IDD). Starting with the creation of a Big Minds Group made up of leaders in the field, and continuing with Pathways Forums held throughout Indiana to gather input from individuals with IDD and their families, their efforts led to the formation of the Indiana Response Team to develop goals and take action. All of those elements of the campaign have come together in The Arc of Indiana’s Blueprint for Change.

The Blueprint for Change is a thorough report which takes a fresh and sometimes hard look at current systems in Indiana then lays out a bold action plan for creating change in how individuals and families receive services. The Arc of Indiana is actively distributing this blueprint online and sending out hard copies upon request. They recently distributed copies to attendees at their annual state conference and provided additional copies to local chapters throughout the state so those chapters could lead the way in taking action in their communities. Contact The Arc of Indiana at 1-800-382-9100 for more information.

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Nationwide Emergency Alert Test May Not Have Visual Disclaimer

/in /by Shelly DeButts

On November 9, 2011, at 2:00 p.m. ET, the Federal Communications Commission (FCC) and the Federal Emergency Management Agency (FEMA) will conduct the first-ever nationwide test of the Emergency Alert System (EAS) consisting of an announcement on every TV and radio channel. This system allows FEMA to communicate important information to citizens in the event of a national emergency. The November 9 alter is ONLY a test of the notification system and no action is required.

However, some people watching cable television may receive only an audio – not visual – notice that this is only a test due to technical limitations of the system. People with hearing impairments will see what appears to be an actual emergency alert but will not see any text on the screen indicating that this is only a test. If this applies to you, don’t be alarmed if you see what appears to be an emergency alert on November 9, it is only a test and no action is required.

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Senators Harkin and Grassley and Congressman Loebsack Meet With The Arc’s “Achieve With Us” Contest Winner

/in /by The Arc

Washington, DC – This week, The Arc of the United States welcomed Tyler Smothers from Cedar Rapids, Iowa to Washington, DC to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack (IA-2) to share his story of achievement.

In August, The Arc announced that Tyler was the winner of the first ever “Achieve with us” social media contest. The contest invited individuals with intellectual and developmental disabilities (IDD) to share their stories of achievement. Out of 119 contestants garnering more than 25,000 votes, Tyler was selected for his impressive achievements in his community, which had been devastated by floods in 2008.

Tyler was and remains very involved with his local chapter, The Arc of East Central Iowa. As downtown Cedar Rapids succumbed to flood waters, and the chapter’s office sustained major damage, Tyler saw the need to help his community get back on its feet. So he became the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.” Putting aside his wheelchair and using an adaptive bike, Tyler leads the ride, and every year since, has raised an impressive amount of funds for his chapter.

As the winner of the contest, Tyler and his mother received a two day trip to Washington, DC. Tyler was in Washington, DC from November 1-3, meeting with The Arc’s National staff in addition to members of his Congressional delegation. Tyler was also joined by his father, J.J. Smothers, and his brother, Josh Smothers, who submitted Tyler’s entry on Facebook.

During his meetings, Tyler shared the challenges of living with a disability. He also told Congressman Loebsack how the services he and his friends receive allow them to remain active in the community and how that is important to him. Tyler’s mother Cindy spoke about how Medicaid is a lifeline for her family. Without Medicaid, Cindy would not be able to work and Tyler would not be able to be the active member of his community that he is.

Tyler’s meetings on Capitol Hill come at a critical juncture in budget negotiations, where programs that people with IDD rely on could be on the table for cuts. The Arc is in the midst of an advocacy campaign, called “Don’t Cut Our Lifeline,” to protect Medicaid.

“Anyone that meets Tyler will learn that he is a young man who values his independence and loves his community. Medicaid cuts in Washington would cause great harm to Tyler, his family, and millions like him across the country because they would be left without the services and supports that allow them to live the kind of life we all want for people with disabilities,” said Peter V. Berns, CEO of The Arc.

Tyler made an impression on each elected official.

“Tyler is an incredible young man – an Iowan who demonstrates why we must focus on an individual’s abilities, not their disabilities. After meeting with Tyler and his family, it is no surprise why he won The Arc’s ‘Achieve with Us’ award. His spirit and dedication to community are an inspiration to all of us,” said – Senator Tom Harkin (D-IA)

“I appreciated getting to meet with Tyler,” Senator Chuck Grassley (R-IA) said. “Tyler is literally leading the way for his neighbors as Cedar Rapids continues to recover from flooding. He’s an inspiration and deserving of this recognition. I encouraged him to keep up the good work, but it was clear to me he was already planning on that.”

“It was an honor to meet Tyler and his family while they were in Washington. His work to raise money for The Arc of East Central Iowa should serve as inspiration for us all,” said said Congressman Dave Loebsack (IA-2). “I applaud The Arc for their work to provide assistance to people with disabilities and I will continue to work to ensure that families like the Smothers have access to the programs and services they need. It is vitally important that people with disabilities have every possible chance to participate in their communities and that their families have the support they need to care for their loved ones.”

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The Arc Welcomes Iowa’s Tyler Smothers, “Achieve With Us” Contest Winner, to Washington, DC to Advocate on Capitol Hill

/in /by The Arc

Washington, DC – This week, The Arc of the United States will welcome Tyler Smothers, from Cedar Rapids, Iowa to Washington, DC to meet with members of the Iowa Congressional delegation.

In August, The Arc announced that Tyler was the winner of the first ever “Achieve with us” social media contest. The contest invited individuals with intellectual and developmental disabilities (IDD) to share their stories of achievement. Out of 119 contestants garnering more than 25,000 votes, Tyler was selected for his impressive achievements in his community, which had been devastated by floods in 2008.

Tyler was very involved with his local chapter, The Arc of East Central Iowa, where he participated in day programs, social events, and interacted in his community. As downtown Cedar Rapids succumbed to flood waters, and the chapter’s office sustained major damage, Tyler saw the need to help his community get back on its feet. So he became the driving force behind The Arc of East Central Iowa’s annual bike riding fundraiser “Tour de Flood.” Putting aside his wheelchair and using an adaptive bike, Tyler leads the ride, and every year since, has raised an impressive amount of funds for his chapter. In fact, in the first year of the ride, Tyler set a goal of raising $2,000 – he far exceeded that amount, bringing in $18,000. The fourth annual “Tour de Flood” took place on September 18.

As the winner of the contest, Tyler and his mother received a two day trip to Washington, DC. Tyler will be in Washington, DC from November 1-3, meeting with The Arc’s National staff in addition to members of his Congressional delegation. He is scheduled to meet with Senator Tom Harkin, Senator Chuck Grassley, and Congressman Dave Loebsack (IA-2) to share his story of achievement. When asked what he will discuss when he comes to Washington, Tyler said, “I am going to tell them living with a disability is challenging.”

Tyler’s meetings on Capitol Hill come at a critical juncture in budget negotiations, where programs that people with IDD rely on could be on the table for cuts. The Arc is in the midst of an advocacy campaign, called “Don’t Cut Our Lifeline,” to protect Medicaid.

“Tyler exemplifies what The Arc stands for and we are honored to host him and his family during their trip to Washington, DC. Tyler is an inspiration to his friends and neighbors in Iowa, and this week, he will take his message to leaders in Washington to demonstrate why in particular the Medicaid lifeline is so important,” said Peter V. Berns, CEO of The Arc.