Photos from the Disability Policy Seminar 2012

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Last week, nearly 700 advocates from 48 states gathered in Washington, D.C. for the annual Disability Policy Seminar. Attendees heard from Assistant Attorney General Tom Perez, 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 I/DD community before spending a day in the House and Senate advocating for their cause with their elected representatives. And many attended special meet & 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 D.C.

Nonprofits Lifting Our Voices – Vote November 6!

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Nonprofit Vote Logo

This November voters will elect the president, 33 U.S. senators, every member of the House of Representatives, and countless others in state and local races. 220 million Americans are eligible to vote – including over 25 million young people and new citizens eligible for the first time. But who will turnout?

Voter turnout will be the key, not just to who wins, but to what voters and which communities are heard after Election Day. In 2010, six of ten eligible voters didn’t turnout, and a disproportionate number were younger and lower income.

Many don’t vote because they are not asked to or reminded by a friend or organization close to them. Small things, like forgetting to request a mail ballot or missing a registration deadline, can get in the way.

Our nonprofits can change that. We are a powerful civic force whose status as trusted messengers and personal relationships with the people we serve every day has the potential to reach and engage large underrepresented populations. Whether your agency helps 10 families, houses 200 residents, or serves 5,000 people, you can improve the lives of your clients and constituents by encouraging them to be active in the democratic process.

Nonprofit VOTE makes it easy with clear and concise resources and materials to help you learn how to encourage voter participation. Nonprofit voter engagement can take a variety of forms: you can register voters, educate your clients and constituents about the voting process, engage candidates, or take a stand on a ballot measure. Browse our resources and get started today!

Together, we can raise our voices and encourage everyone to become a voter in 2012. As Susan Dreyfus, the president of the Alliance for Children and Families asked, “Who better than the nonprofit human services sector to embrace participation in the democratic process as a part of how we achieve our missions?”

George Pillsbury is the founder and Director of Nonprofit VOTE, as well as the author of “Nonprofits, Voting, and Elections: A Guide to Nonpartisan Voter Engagement for 501(c)(3) Nonprofit Organizations”. He also founded and directed MassVOTE and started several foundations dedicated to community uplift. His work in the fields of philanthropy, social investing, and voter and civic participation spans three decades. 

Join Us for our First Twitter Chat! We’ll Talk About Autism with the CDC and More

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On Monday, April 30th at 3pm EST, 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.

April is Fair Housing Month!

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Live Free

This April we celebrate the 44th anniversary of the Fair Housing Act – a powerful law that fights housing discrimination and opens doors for people with disabilities across the U.S.

This year’s theme is “Live Free: Creating Equal Opportunity in Every Community.” Fair Housing Month events are being held all over the nation.

What is The Fair Housing Act?

The Fair Housing Act prohibits discrimination in the sale, rental, and financing of housing based on race, color, national origin, religion, sex (gender), familial status, and disability. Under the Fair Housing Act, it is unlawful to discriminate in any aspect of selling or renting housing or to deny a dwelling to a buyer or renter because of the disability of that person, a person associated with the buyer or renter, or a person who plans to live in the residence.  For example:

  • The Fair Housing Act requires landlords to allow tenants with disabilities to make reasonable access-related modifications to their private living space and common spaces (landlords are not required to pay for the changes).
  • The Fair Housing Act requires landlords to make reasonable exceptions in their policies and operations to afford people with disabilities the opportunity to use and enjoy their housing. A landlord with a “no pets” policy may be required to grant an exception for a tenant who uses a service animal.
  • The Fair Housing Act prohibits lenders from imposing different application or qualification criteria on people with disabilities, or inquiring about the nature or severity of a disability (except in limited circumstances). The U.S. Department of Housing and Urban Development (HUD) recently charged Bank of America with discrimination against people with disabilities.
  • The Fair Housing Act requires that new multifamily housing with four or more units be designed and built to allow access for people with disabilities.

It’s been over 4 decades since President Lyndon B. Johnson signed the Fair Housing Act into law.  There’s much to celebrate, but also much work to do.  People with disabilities increasingly want to live in the community in a home that they rent or own. Unfortunately, far too many find that discrimination limits their options: disability-based discrimination is the top reason for Fair Housing Act complaints submitted to HUD.

What can you do?

If you suspect discrimination, you can file a complaint with HUD online or by calling 800-669-9777, or TTY 800-927-9275. You may also file a lawsuit in court.  Contact a local fair housing agency for guidance and help filing a complaint.

A Lifeline for Vernon

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Don't Cut Our Lifeline Logo

We constantly talk about how Medicaid is a lifeline for individuals with intellectual and developmental disabilities (I/DD), but sometimes we need a reminder of what that actually means.

Medicaid provides individuals with significant disabilities who generally don’t have access to employer-based or other private coverage access to health insurance and programs that help them live independently in the community.  For many families a Medicaid waiver is the difference between their loved one living in an institution or remaining at home, surrounded by friends and family.

Please take a moment to read about Colena Jones and her son Vernon.

To learn more about how Medicaid is a lifeline for Vernon and so many others, visit our Don’t Cut Our Lifeline page on our website.

Celebrating National Sibling Day with My Brother

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By Kim Keprios, member of The Arc’s National Sibling Council and the Sibling Leadership Network

Kim Keprios and Family

Kim Keprios and her family share a day out on the water.

My brother Mike, “Kep” as I affectionately call him, is a man of tradition. As a family we are bound together by Kep’s desire to celebrate every Hallmark Greeting Card holiday ever invented. Add the National Sibling Day to our list of gatherings on the calendar that we will joyfully honor as a family this spring! National Sibling Day celebrates the unique bond between people with intellectual and developmental disabilities and their brothers and sisters.

The Anchor

Mike has always brought our family together. He keeps us laughing, grounded, grateful and humble. Although he has a significant disability, Kep has been the anchor in our family. On rare occasions I have felt like he is a weight that ties me down when I yearn for the freedom to “leave home,” but mostly he is an anchor in the best sense of the word.

Kep led me to a career path I may otherwise never have pursued, or been afforded the opportunities I have had through my 30 years with The Arc Greater Twin Cities. At the core he is behind the passion and sense of urgency I bring to my work in advocacy with people with intellectual and developmental disabilities and their families.

Mike’s Little Sister

Now my beloved brother and I are on the official AARP membership rolls. Together we are experiencing the painful realities of getting older. Our dad died last September. The hole in my heart is huge, but it is magnified as I watch Kep struggle with the loss of “Daddy George.” At times he says quite calmly, “Daddy George is not here — he is in heaven.” But then there are the times when Kep is anxious, sad and announces “Oh, I miss Daddy so much.” As usual, he says it like it is — his grief is front and center.

For 55 years as Mike’s “little sister,” he has been teaching me how to live life — all of it. Our April family gatherings will reflect the joys and sorrows that come with a rich life – missing dad at our traditional Easter brunch, and celebrating National Sibling Day. My big brother will guide me through both with a grateful heart!

About Kim

Kim Keprios is a member of The Arc’s National Sibling Council and the Sibling Leadership Network. She has developed and implemented programs for kids and adults who are sibling of people with intellectual and developmental disabilities at The Arc Greater Twin Cities since 1990. Her brother, Michael George (Kep) Keprios, was born in 1955 without eyes with a diagnosis of severe intellectual and developmental disabilities. Advised by doctors to institutionalize Mike, his parents George and Dodie ignored the counsel and brought Mike home to be raised with his siblings. Today, the man who doctors said “would likely never walk or talk” loves to dance, works at Old Chicago Pizza, volunteers at The Arc’s Value Village Thrift Stores, enjoys going to church and loves Country Western concerts.

The New Arc Audi Racing Program Gives People with Disabilities a Hands-On Look at the Racing World

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Washington, DC – The Arc is excited to announce The Arc Audi Racing Program, a new partnership between The Arc and Istook’s Motorsports.  The goal is to provide a unique opportunity for people with intellectual and developmental disabilities (I/DD) to get a taste of what it is like to be part of a fast-paced professional race crew at select races in the 2012 Pirelli World Challenge race series.

A partnership with Istook’s Motorsports, Volkswagen Group of America and the Pirelli World Challenge series, The Arc Audi Racing Program will invite 20 individuals with I/DD, their support staff and staff from select chapters of The Arc to be honorary crew members at seven races, giving them a unique race day experience and helping to raise awareness of The Arc and I/DD among racing fans everywhere.  This year, The Arc Audi Racing Program expects to compete in Utah, Michigan, Ohio, in three races in California, and one in Canada.  The first race will be Sunday, April 15 in Long Beach, California, with The Arc of Los Angeles and Orange Counties participating.

“We are thrilled to be able to offer individuals with intellectual and developmental disabilities the opportunity to be a part of a professional race crew team for a day. Through this partnership, we hope to show the public that people with I/DD are capable of achieving their dreams in the professional field of their choice, including the motor sport industry,” said Peter Berns, CEO of The Arc.

Professional race team owner Don Istook and his wife Laurie have a personal connection to the I/DD community. Two of Laurie’s brothers, Mark and Tyson, have Fragile X, but this does not stop them from being an active part of Don’s professional race pit crew. Inspired by their success, Don and Laurie contacted the national office of The Arc to propose a program to give select chapters of The Arc across the country the opportunity to be an integral part of seven races this year. Participants will be able to see The Arc Audi Race Team cars, talk to the crew and play a hands-on role in preparing the cars for the race.

“Mark and Tyson have really taken to the motorsports industry, and they have opened my eyes to the fact that people with disabilities can be a part of any profession with the right support.  This partnership with The Arc was really just an idea Laurie and I had that we hoped would allow more people with disabilities to experience what we experience at the race track, and it has blossomed into a great opportunity for us and for The Arc’s network,” said Don Istook.

Start Your Engines!

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The Arc Audi TT Race Car

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 I/DD 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 I/DD 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 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 this exciting ride with Don and his team. The Arc’s national office will be posting updates from the races on Facebook, Twitter and our blog in the coming months. And you can see the races live online and on later broadcast by NBC Sports (full broadcast schedule).

Why I Got Involved with The Arc’s National Council of Self-Advocates

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By Kevin Smith, one of the founding members of The Arc’s National Council of Self-Advocates

The Arc: For People with intellectual and developmental disabilities

I got involved in the self-advocacy movement because it promoted things that I believed in, both as a person with a disability and as just a person.  When I got involved in self-advocacy in the early 90s, people with disabilities were segregated from the rest of the community.  We were categorized as poor, pitiful, and helpless.

I wanted to join The Arc’s National Council of Self-Advocates because this movement has had a huge impact on my life and I want to share it with as many people as possible.  I hope this Council accomplishes two things: To tell people that they have the right to be included in their community and not be shut behind closed doors. The second would be that together, as a national group, the government will hear our needs and make a difference in someone’s life. I want to leave people with disabilities in better shape than when I started.

About The Arc’s National Council of Self-Advocates

The NCSA was developed to foster the active involvement of individuals with I/DD in the work of The Arc. Its primary purpose is to empower persons with I/DD to voice their opinions about what is important to them and to ensure that they are afforded the same opportunities as everyone else to have a meaningful life in the community. In joining the Council, members will be able to network with others who are involved in advocacy work, educate the public about the issues that are important to people with I/DD, and become active leaders in their communities.

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