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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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Meet Teddy: Self-Advocate, Entrepreneur, and Inspiration

/in /by Guest Blogger

By: Annette Downey, Director of Community Living Services of Oakland County in Ferndale, Michigan

Teddy Fitzmaurice is a 28 year old energetic entrepreneur with Down syndrome who promotes human rights and disability advocacy. Teddy lives in his own apartment and loves to play his music loud and watch TV whenever he wants. He enjoys taking care of his bunnies, Chloe and Amy, walking, running, biking, swimming, and hanging out with his many friends.

Teddy began his own business, Teddy’s Ts, in 2006. He sells T-shirts that come in many sizes, along with a multitude of buttons. Teddy has taken his business around the country including Washington DC, Chicago, New York, San Juan, St. Louis, and Columbus just to name a few of his stops. He also displays his shirts in several stores.

The logos displayed on Teddy’s t-shirts and buttons promote improved quality of life, social justice, and equality for all. Teddy promotes community living, self-determination, inclusive education, and people first language. His merchandise proudly displays messages such as “Label Jars, NOT People”, “Shred the word – R E T A R D E D” and “Disabled, Sexy, and Proud!”. Teddy uses a variety of creative methods to share his vision and passion for advocacy.

Always the happy salesman, Teddy is eager to attend every conference he can to sell his shirts. Teddy’s products are creative and inspirational, and they promote disability rights and social justice.

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Finding Your Perfect Summer Job

/in /by The Arc

With summer’s arrival, thousands of teens across the country are looking for their perfect summer job. Individuals with intellectual and developmental disabilities (IDD) have a lot to consider as they start applying for summer jobs, and we hope the following resources will be useful as they begin the process not only for summer employment, but for a meaningful long-term career.

For a comprehensive list of terms that will help you or your loved one as they begin to look for a job, visit the Autism NOW Center’s employment glossary. This compilation will explain some terms that may otherwise be confusing and answer questions about different work environments.

Planning is key. If you break your job search down into a series of small, workable tasks, the process will be more manageable. One way to keep tasks in order is to create a 30-Day Placement Plan. The following brief provides a placement plan form, along with instructions about how to use it: The 30-Day Placement Plan: A Road Map to Employment.

The Arc’s Resource Center has a number of links to help you learn about additional programs, and how to utilize the transition services that you already have in place to find employment.

There are also a number of resources available in your community:

  • Contact your state or local IDD agency or State Vocational Rehabilitation Agency for information about employment services for people with disabilities in your area.
  • If you are a student age 16 or older who receives special education services, your Individualized Education Program, or IEP, should include a transition plan with goals for your transition to adult life, including employment. While you are still in school, you should be learning how to find a job or continue your education after you graduate.
  • Contact your local chapter of The Arc. They can assist you in finding out what you need to do and who to contact in your area. Find your local chapter’s contact information.
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Wings for Autism Workshop: A Parent’s View

/in /by Tonia Ferguson

By Tonia Ferguson, Director, National Initiatives, The Arc

Last month, I had the pleasure of attending Wings for Autism Workshop at Logan International Airport in Boston, MA. As a parent of a child with autism I didn’t know what to expect, but was excited to participate. I can’t even begin to describe what a wonderful program this is and how much of a difference it can make to children on the spectrum and their families.

I’ve never travelled with my son, Jared because I have always had concerns about how he would deal with security and the excess of people and noise that fill airports on a daily basis. Observing the way that Wings for Autism addressed the concerns I had, and went into further detail to prepare individuals for all the aspects of travel truly impressed me.

The daylong event gave parents and children a “test run”, where they went through every step of traveling on a major airline. With volunteers from JetBlue including flight attendants and pilots, officials from the Transportation Security Administration (TSA), ticket counter agents, and collaboration with other airlines and their staffs the simulation truly prepares parents and children for what to expect when traveling. The simulation requires families to clear security, board the plane, fasten their seatbelts, and prepare for take-off. A highlight for the kids was a tour of the cockpit given by a pilot.

For children that are having issues with the various parts of the simulation there are behavioral specialists on hand to help parents and children work through any problems they may be having.

While this event is intended to benefit the families participating, I was impressed to see the volunteers from TSA and JetBlue benefiting from the experience as well.

The Arc’s national office plans to work with The Charles River Center (a chapter of The Arc) to expand Wings for Autism. If you are interested in the program and want to find out how to bring a workshop an airport near you, please email wingsforautism@thearc.org.

This experience opens up a world of possibilities for my family and other families with children on the spectrum, the sky’s the limit. I look forward to working with Wings for Autism as they expand this innovative program and I hope to take Jared to a simulation at our local airport in the near future.

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The Arc of Alameda County Shifts Gears

/in /by Guest Blogger

By Richard Fitzmaurice, Director of Community Relations at The Arc of Alameda County

It was loud. It was smelly. It was crowded. It was the thrill of a lifetime!

Eleven of The Arc of Alameda County’s 600 clients traveled some 100 miles south to California’s central coast for the Monterey edition of the Pirelli World Challenge motor race.

It was not the typical community-based excursion.

Carrying personal belongings in backpacks specially designed for The Arc of Alameda County, the group entered Laguna Seca raceway and was immediately dazzled by the sights, sounds, colors and cars. Of particular interest was the white Audi TT RS with The Arc’s logo on the hood sandwiched between the Revo technik and Pirelli logos.

Representing The Arc of Alameda County was: Peter Parkins, Angel Peregrina, Dania Leyva, Peter Roe, David Robinson, Laimone Williams, Nelvin Goree, Annick Woodall, Dominic Lerona, Kenneth Lee and Terry Newman.

Staff members included Mark Caleira, Jr., Ed Segovia and Juan Ramirez. They were assisted by Joann Scruggs and Raymond Gaddis.

The Arc crew was immediately ushered not to the usual grandstand seats but straight to the pit where they served as honorary members of the ISTOOK’s Motorsports pit crew. After enjoying a homemade bag lunch and helping wax the car, driver Don Istook and his wife Laurie offered insights into the world of racing.

“He told us about the car – showed us how everything works,” said David Robinson, a client at the vocational development center in San Leandro.

It was personal experience involving family members with intellectual and developmental disabilities that led Don and Laurie Istook, owners of ISTOOK’s Motorsports, to form a partnership with The Arc and create the Arc Audi Racing Program. It was that focus on the abilities – not disabilities – of the people we serve that made the Istooks comfortable giving The Arc of Alameda group total access to the pit. Clients even got to check out the other cars.

“I got to meet other drivers,” said Angel Peregrina also of San Leandro. “Don was nice and super helpful.”

“Everyone was great,” commented Community Service Manager, Mark Caldeira. “Even crew members not affiliated with ISTOOK’S Motorsports took time to explain what they were doing and why they were doing it. It could not have been a better experience for our clients,” he said.

As race time approached, the Arc crew was invited to participate in “the walk to the grid.” Don, who also has The Arc logo on his race suit, climbed into the Audi and fired up the 2.5L turbocharged engine and began creeping toward the gate leading to the track. The Arc crew walked along side.

“It was loud but it was good,” said Peregrina.

When the race started, clients were in their seats and gave Don a huge cheer on every lap as he passed by.

Monterey was the third stop on the Pirelli World Challenge seven-race circuit. At each venue, the Istooks invite local chapters of The Arc to attend. They even invited the Alameda County group to return to Laguna Seca next year.

“We’re going. We’re definitely going!” Peregrina said with a huge smile.

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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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NYSARC Weighs in on Justice Center Legislation in New York

/in /by The Arc

New York Governor Andrew Cuomo addressed last year’s New York Times expose on abuse and neglect in the state’s system by proposing “The Justice Center for Protection of People with Special Needs.” NYSARC issued a memorandum of support of the plan.

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The Arc Responds to the National Disability Rights Network’s Newest Report

/in /by The Arc

Washington, DC – The Arc of the United States applauds the National Disability Rights Network for its report “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights.” The report reviews the facts of Ashley X, who five years ago made national news when her parents decided to medically stunt her physical growth and maturation. The report presents a compilation of similar experiences and “treatment” of individuals with disabilities that discriminates against them based on their disability and undermines the integrity of their unique individuality.

“We are saddened and angered by the evidence NDRN presents about people with intellectual and/or developmental disabilities who continue to experience disability–related discrimination in decisions to provide, delay, deny, or limit health care interventions or treatments. Protections must be in place to assure that an individual’s health, well-being, and expressed wishes, if known, are the only justifiable bases for making medical decisions,” said Peter V. Berns, CEO of The Arc.

The Arc has a history of speaking out against such medical atrocities and advocating for changes to ensure the rights of individuals with intellectual and/or developmental disabilities are protected. For years, The Arc has held the belief that growth attenuation treatment to modify a child’s typical development should be prohibited.

The Arc looks forward to working with NDRN and other organizations to create additional safeguards to protect the civil rights of people with disabilities.

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An Open Letter to the Dr. Phil Show: People With Disabilities Have a Voice

/in /by Peter Berns

Dear Dr. Phil,

What the disability community can do:

I am writing on behalf of the millions of people with intellectual and developmental disabilities (IDD) in our nation and their loved ones that may have seen the April 13, 2012 Dr. Phil episode entitled “Deadly Consequences.” As the nation’s largest organization serving and advocating on behalf of people with IDD, with a network of over 700 chapters across the country, we’ve received many outraged complaints about the content of this program, and after viewing it, I felt compelled to contact you to voice our concerns.

Frankly, we are appalled by the superficial coverage given to a subject that is, literally, a matter of life or death for Jeffrey, Janet and many other people with severe physical and cognitive disabilities. Your show did a great disservice to people with intellectual and developmental disabilities, as well as others who develop severe disabilities throughout their lifetimes as a consequence of traumatic brain injury, trauma experienced in serving our country, and the natural process of aging. Moreover, asking the audience to serve as Dr. Phil’s death panel and vote on whether Jeffrey’s and Janet’s lives are worth living was simply wrong. It is reassuring that the majority of people taking the online poll on your website reject the audience’s conclusion.

Annette Corriveau is entitled to free speech. But so are her son Jeffrey and daughter Janet. While they cannot physically speak for themselves, your program still could have provided for their voice to be heard. It should not be presumed that people who can’t speak are totally unable to communicate. Perhaps you could have interviewed the caregivers who interact with them on a day to day basis and could speak with authority about how Jeffrey and Janet communicate what they are feeling and about their quality of life. Often it is more a matter of our learning how to listen and to interpret the other cues that individuals with severe disabilities are able to provide. Your show focused only on Annette’s opinion, and while she is their mother, she admitted that she sees them only every other month and institutionalized her children many years ago.

You also could have interviewed other people with severe disabilities who, like Jeffrey and Janet, were written off as having no value and no abilities, yet who have succeeded in living in and in participating in their communities. Too often people with severe disabilities are dismissed, yet when given a chance and provided appropriate supports they can rise above the low expectations that others have for them. You might, for example, have interviewed other parents who fought to get their son or daughter out of an institution and have been amazed at how they have succeeded far beyond what anyone expected.

The show would also have been enriched by interviewing some of the many experts that have a deep understanding of individuals like Jeffrey and Janet and extensive experience in supporting people with severe disabilities to live meaningful lives in the community. There are families all across the nation fighting to get their sons and daughters with severe disabilities out of institutions and get them the home and community based services they need. Their perspective, and that of advocates in the disability rights movement, would have added balance to the show. Your viewers need to understand the history of oppression of people with severe disabilities in the country and how far we’ve come. The viewer has no idea of the dark history of the eugenics movement in the United States and globally because you didn’t show it.

The Arc is the largest national charity federation advocating for and serving people with IDD, including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 700 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

We can serve as a resource for future shows, providing technical assistance and suggesting guests (experts in the IDD field, self-advocates, professional support staff, and families) to help explain the complex issues facing people with IDD for the audience who may have no interaction with people with disabilities in their daily lives. The result of your failure to include this perspective left the impression on your millions of viewers that Jeffrey, Janet, and other citizens with disabilities don’t have a voice and rights. They do.

The Dr. Phil show has a responsibility to get it right for your viewers, including people with IDD. On behalf of people with IDD and their families, we ask that you plan another show that would demonstrate this history, illustrating how people with severe disabilities who were previously relegated to institutions have defied all expectations.

The timing is right for you to put these issues in the living rooms of Americans, as fifty years ago, President Kennedy made a call to the nation to help bring people with intellectual and developmental disabilities out of the shadows, to give them opportunities to lead productive, quality lives. We are also approaching the 30th anniversary of the state of New York announcing the closure of the nation’s most notorious institution, Willowbrook, which was an overcrowded, filthy, deplorable warehouse for thousands of children for decades and the site of a highly controversial Hepatitis A study starting in the mid-1950s through the 1970s.

The Arc stands ready and willing to assist you in preparing a program that accurately portrays the lives of people with intellectual and developmental disabilities, shows the rich history of this movement, and makes the public aware of just how similar people with severe disabilities are to you and me.

I hope you take The Arc up on our offer to be a resource for you so that you can live up to your duty as a journalist and so that people with IDD have a seat at your table in upcoming episodes.

Sincerely,
Peter V. Berns
CEO, The Arc of the United States

What the Disability Community Can Do

If you share the same concern that we do about this episode, send Dr. Phil a message on Twitter and let him know your feelings. Use the hashtag: #VoiceofTheArc

Here’s an example:

@DrPhil Individuals who are non-verbal still have a voice. Give everyone a chance to hear them on a future show. #VoiceofTheArc