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Our Journey to Bring “Our Friend Mikayla” to Schools Across Pennsylvania

/in /by Guest Blogger

By Kim Resh, mother to Mikayla Resh

It is a certainly a most amazing accomplishment that Our Friend Mikayla, the book inspired by my daughter and written and illustrated by her third grade classmates, is now in every public elementary school in Pennsylvania. Still, I’m really not entirely surprised. I believe in kids. I always have. And if at any time I had doubts, kids have always renewed my faith.

No matter how certain we were of our decision to include Mikayla in a regular education classroom, we were afraid of how the other kids would react and respond to her. But our fears were unfounded. From the very first day, the children wanted to push her in her wheelchair, sit next to her at lunch, even turn off her feeding pump when it alarmed. So when they grew old enough to write their story, I knew theirs was a message worth sharing.

I’ve always said that even if the book was never published, the time we all spent working together was an incredible experience. Our honest discussions were priceless and are clearly portrayed through the kids’ writing. When I edited their words into one story, I was surprised at how easily the book wrote itself. And to be honest, almost everything else has fallen into place with equal ease.

I wrote one grant for publishing. That was approved, and another organization asked to help. Individuals and families privately donated copies of Our Friend Mikayla to their own school libraries. It was obviously more difficult to find donors for a statewide distribution program so I am grateful to Walmart and Air Products for their grants, which respectively afforded the printing and mailing of books across the state.

Still, am I surprised every public elementary school finally has a copy? No, humbled and most appreciative, but not surprised. It is all about the kids. They are smart. They understand more than adults at times. Young children are innocent and pure, capable of unconditional friendship and compassion. If learned young, these lessons last forever. By including our students with and without disabilities in the same classrooms, they will teach other life’s most important lessons. Our Friend Mikayla is not just a book, it is a wonderful example of what is possible in every school across the state, country, and beyond.

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Charging Through Belle Isle Raceway With The Arc

/in /by Guest Blogger

By Laurie Istook, wife of driver Don Istook

As Don and I tour the country for the Pirelli World Challenge, we have had the opportunity to meet many amazing individuals with intellectual and developmental disabilities (IDD) through The Arc Audi Racing Program. Most recently we were in Detroit at the Belle Isle Raceway. We were joined by staffers and self-advocates from The Arc of Western Wayne County.

The time leading up to the race and prepping with our new friends from The Arc was wonderful. From teaching them about the car, to having them help Don and his team get ready for the race it was an exciting time for all of us. The real highlight came after the race when Don won the “Hard Charger” award for the race. He won because he moved ahead of more cars during the race than any other driver.

While accepting his award on the winner’s podium, Don dedicated it to my brother Mark and our visitors from The Arc.  He let everyone know that people with intellectual and developmental disabilities can be “hard chargers” too if they are just given the chance.

We look forward to more races, victories, and of course to continuing our work with The Arc and their local chapters.

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Join The Arc and Inclusion International for “Achieving Inclusion Across the Globe”

/in /by The Arc

Registration is now open for the 2012 National Convention and International Forum in Washington, DC October 25-28. This year, The Arc will be joined by Inclusion International, a global federation of family-based organizations advocating for the human rights of people with intellectual and developmental disabilities. This is an incredible opportunity to connect with others in the intellectual and developmental disability community at this annual gathering of The Arc’s membership, chapter staff and volunteers, professionals and experts in the field and individuals with IDD and their families.

Meet us at the Grand Hyatt in downtown D.C. to explore the global implications of Article 19 of the Convention on the Rights of Persons with Disabilities: Living independently and being included in the community. Inclusion International is involved in an important campaign to promote Article 19, which will culminate at this event with the release of a special Global Report. Also, we’ll focus on national and international issues related to advocacy, employment, and public policy.

This four-day event filled with enlightening and informative sessions kicks off with pre-conferences dedicated to the topics of leadership and self-advocacy. Then, The Arc & Sprout National Film Festival brings you a new slate of entertaining short films by and about people with IDD. The Arc will hold three Annual Business Meetings to adopt several revised position statements and hold elections for its Board of Directors among other important business. And, look for Entrepreneur Alley in the Marketplace where businesspeople with IDD can showcase their entrepreneurial spirit. Then, stick around for a closing event with D.C. Mayor Vincent Gray sharing the popular tradition of “Hand Dancing” (similar to swing dancing) with the crowd.

Register now and take advantage of early registration and hotel discounts.

Special Thanks to Our Sponsors: Arc Thrift Stores of Colorado, CARF International, Diversified Nonprofit Services, Hammer Travel, Managance Coaching and Consulting, Marsh, Medisked, MetLife, Mutual of America, NADD, Rest Assured, Special Needs Alliance and Vibrant Creative.

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2012 Disability Policy Seminar Recap

/in /by The Arc

Last week, nearly 700 advocates from 48 states gathered in Washington, DC for the annual Disability Policy Seminar. Attendees heard from Assistant Attorney General Tom Perez, and Special Assistant to the President on Disability Policy, Kareem Dale, and were treated to a reception on Capitol Hill hosted by Sen. Tom Harkin (D-IA). They also had the chance to gather information from policy experts and representatives from the Obama administration about key issues for the intellectual and developmental disabilities community before spending a day in the House and Senate advocating for their cause with their elected representatives. And many attended special meet and greet sessions for self-advocates and siblings from The National Council of Self Advocates of The Arc and the National Sibling Council. If you missed this year, be sure to plan to attend the 2013 Disability Policy Seminar April 15-17 at the Grand Hyatt in downtown Washington, DC.

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Join Us for Our First Twitter Chat

/in /by The Arc

On Monday, April 30 at 3:00 p.m. ET, The Arc will host a Twitter chat with the Centers for Disease Control and Prevention (CDC) and other organizations to talk about the latest data on the prevalence of autism and the resources available to people with autism spectrum disorders and their families. During the hour-long chat, we will take your questions and comments – so join us for this Twitter dialogue!

We will explore topics like the early signs of autism in a child, the latest research, including the CDC’s new prevalence data, and resources available through The Arc’s Autism NOW Center.

Following the chat on Twitter is easy. First, follow @TheArcUS and @AutismNowCenter on Twitter. We’ll be using the hashtag: #TheArcChat – this link will allow you to follow the conversation.

There, you’ll be able to follow the conversation in real-time. Keep in mind, if you want to participate in the chat, you’ll need an account on Twitter. If you haven’t used Twitter before, here’s a great link to learn more about it and the basics of Twitter.

If you need an accessible version of Twitter, we recommend using Easy Chirp. Simply visit its website, and sign in with your Twitter credentials.

If you want to be part of the conversation on Twitter, simply use the hashtag: #TheArcChat when you tweet. You can find out more about hashtags in Twitter’s Help section.

We hope to hear from you on Monday, April 30th during our Twitter chat on autism.

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Start Your Engines!

/in /by The Arc

The Arc is excited to race into cities across the country with Istook’s Motorsports, Volkswagen Group of America, and the Pirelli World Challenge Series to raise awareness of The Arc and and IDD among racing fans everywhere.

We officially kick of The Arc Audi Racing Program at the Long Beach Grand Prix on April 15. Twenty individuals from The Arc of Los Angeles and Orange Counties, including people with intellectual and developmental disabilities are heading to the racetrack to serve as honorary crew members for Istook’s Motorsports. They’ll get hands-on in the paddock with the drivers and crews as they prepare for the race and then watch the team compete for point in the Prielli World Challenge Series with their Audi TT RS.

Team owner Don Istook and his wife Laurie share The Arc’s commitment to ensuring that people with IDD are fully included, especially when it comes to employment opportunities. Laurie’s brothers Mark and Tyson Heitt both were diagnosed with Fragile X, but that has not stopped them from working as an integral part of Don’s race team. Don and Laurie wanted to give other people with IDD 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 this exciting ride with Don and his team. The Arc’s national office will be posting updates from the races on Facebook and Twitter in the coming months. And you can see the races live online and on later broadcast by NBC Sports.

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The Countdown Is On to All-Electronic Social Security Payments

/in /by The Arc

The Treasurer of the United States, Rosie Rios, started an official “countdown clock” marking less than one year until the March 1, 2013 deadline when all federal benefit recipients must receive their Social Security and other federal benefit payments electronically.

The move will help taxpayers save $1 billion over 10 years and will greatly decrease the risk of identity and check theft faced by recipients of mailed benefits. Currently, about 90 percent of Social Security and Supplemental Security Income (SSI) payments are being made electronically. The remaining 10 percent have less than a year left to switch over before electronic benefits become mandatory.

This will impact many of the millions of individuals with intellectual and developmental disabilities (IDD) who are eligible for and rely on these benefits, their families and those who act as trustees for federal benefit payments. . However, the Treasury Department has attempted to make it easy to set up electronic payments through its “Go Direct” campaign. Free financial education materials are available along with a “Go Direct Money Matters” page at www.godirect.org which offers not only information about how to receive electronic payments, but tips for retirement planning, preventing theft and more. Check it out and mark your calendar for March 1, 2013 if you or someone you care about receives federal benefit checks by mail.

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Top Five Reasons to Attend the 2012 Disability Policy Seminar

/in /by The Arc

Are you joining us at the 2012 Disability Policy Seminar in Washington, DC? If you haven’t made up your mind yet, here are some great reasons to register. We don’t want you to miss your single best opportunity to connect with the intellectual and developmental disability movement this year, but if you’re still on the fence, consider this:

Top Five Reasons to Attend the 2012 Disability Policy Seminar:

  1. Meet face-to-face with your elected representatives and take advantage of a unique opportunity to let them know in person what’s important to you and what they can do to earn your vote. On the third day of the seminar, we’ll visit Capitol Hill for scheduled meetings with Congressional representatives and their staff.
  2. Learn how to be an effective advocate, not just in Washington, but in your community once you return home. The information provided at the Disability Policy Seminar will give you a broader and better understanding of the role public policy plays in the day-to-day lives of people with IDD and what you can do to create change. You can event attend a pre-event Seminar Trainee Orientation webinar hosted by AUCD.
  3. Make your mark on an important election. The focus of the Seminar is giving you the tools you need to educate elected officials and candidates running for office on IDD community’s most crucial issues. The Seminar should inspire you to engage in the political process and give you the information you need to understand exactly how public policy impacts people with IDD.
  4. Network. Meet with other from your state and across the country who share your passion. If you’re a self advocate or a sibling of someone with IDD, attend special breakfast meet & greets to find out more about how you can get involved in The Arc’s new National Council of Self Advocates or our The Arc’s National Sibling Council.
  5. Visit Washington DC’s famous Cherry Blossom Festival! There’s no reason you can’t have a little fun while you’re here. Explore DC from your convenient downtown base at the Grand Hyatt where restaurants, entertainment, shopping, public transportation and the historic National Mall where the cherry blossoms bloom is close by.

Get the best rates and availability – special early registration rates until March 20. Get more information or register and book your room now at www.disabilitypolicyseminar.org.

The annual Disability Policy Seminar is hosted by: The Arc, United Cerebral Palsy (UCP), Association of University Centers on Disabilities (AUCD), American Association on Intellectual and Developmental Disabilities (AAIDD), National Association of Councils on Developmental Disabilities (NACDD), and Self-Advocates Becoming Empowered (SABE).

Sponsored by Hammer Travel – a unique travel planning resource for people with disabilities. www.hammertravel.org.

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March Is the Month to Make Your Mark

/in /by The Arc

March is Developmental Disabilities Awareness Month thanks to a 1987 Presidential Proclamation from Ronald Reagan, which was the direct result of the advocacy efforts of The Arc. A lot has changed since then, more people with intellectual and developmental disabilities (IDD) are living and thriving in their communities rather than institutions, there are more opportunities, more protections and more respect for and inclusion of people with IDD in their communities. But we must remember that many of those advancements were hard won. Advocacy was the impetus for many of the positive changes in our society, such as the creation of DD Awareness Month. And that will continue only as long as we fight for it.

In 2012, a pivotal Presidential election year, we are fighting to protect Medicaid. Since many people with disabilities rely on publicly funded services to fully participate in their communities, policy makers need to know you are concerned about continuing those services in the face of budget cuts during tough economic times. Take advantage of March to make your mark on the candidates who hope to hold office in 2013 and beyond. Use Developmental Disabilities Awareness Month as a reason to get involved and get active today!

What Can You Do?

  • Help us educate candidates about the issues concerning people with IDD. Learn more about public policy that impacts people with IDD and then write letters and email and go to campaign events to tell the candidates what you expect them to do to earn your vote.
  • Find a local chapter of The Arc and get involved. Over the coming months we will be working through our national chapter network to help people talk to the candidates, register to vote, get to the polls and collectively make their mark!
  • Consider attending The Disability Policy Seminar in Washington, DC in April. Each year we spend two days covering current public policy in depth to prepare you for a third day on Capitol Hill actually meeting with your Members of Congress and discussing the issues.

Look for more information about our We’ve Got the Power Campaign to engage voters and candidates over the crucial months leading up to Election Day. Together, we do have the power and we can continue to create change!

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Autism NOW Center Launches Local Agencies Directory and Mobile Site

/in /by The Arc

Check out the announcement over on the Autism NOW Center website about new features on its site:

“Led by The Arc and funded by the Administration on Developmental Disabilities, 2011 was a busy year for the Autism NOW Center. With five regional summits, dozens of webinars, and the creation of a top-notch informational website with input from partners in the disability field, we went into 2012 with exciting ideas to expand upon that important work. While www.autismnow.org is becoming a go-to resource for families, individuals with autism, and experts in the field, we’re still working hard on adding new features and content!

We just rolled out two exciting new features on the site recently – a mobile version, allowing users on mobile devices like smart phones and tablets to see an optimized version of the site, and a local agencies directory in the form of a map. This mobile version lets users get to content faster on the go, and creates better accessibility overall for the site. The local agencies directory provides an easy-to-use way to find agencies in your state that can help with services, support and resources for living with autism and other developmental disabilities.”

The Autism NOW Center staff, a national initiative of The Arc, has a busy year planned. Other planned features include commenting on blog articles, a message board, an enhanced community calendar and new video content. Keep an eye on autismnow.org for the latest announcements and resources!