Senator Clinton joins Easter Seals in honoring advocates

by Katy Beh Neas

Recently the Easter Seals Advocacy Awards Benefit was held in Washington, D.C. with an all star cast.

We were thrilled that Sen. Hillary Clinton was able to drop by and give special recognition to Rep. John D. Dingell. Rep. Dingell was honored for his half-century of advocacy on behalf of the health of all Americans, including those with disabilities. In March, Sen. Clinton introduced the Expanding the Promise for Individuals with Autism Act.

Rep. Dingell joins a distinguished list of legislators who have received the Advocacy Award in years past, including U.S. Sens. Charles Grassley, Paul Sarbanes, Barbara Mikulski and John Warner; Reps. Steny Hoyer and Eleanor Holmes-Norton; and Secretary of Transportation Norman Mineta.

The Eastern Division of Safeway, Inc. was also honored for their efforts on behalf of those who need Easter Seals services the most. During the month of April, they raised $443,000 for Easter Seals.

Judy Woodruff of the NewsHour with Jim Lehrer was the Mistress of Ceremonies. Ms. Woodruff is no stranger to disabilities — her twenty-something son who has Spina Bifida worked in the Easter Seals Office of Public Affairs as an intern last summer.

Who knows what next year will bring?

Book Review: Stephen Shore’s “Beyond The Wall”

by Ellen Harrington-Kane

You may be familiar with Stephen Shore. He’s an author, public speaker and member of the Autism Society of America’s Board of Directors. He’s also an adult on the spectrum. He gave the closing speech at the recent Easter Seals Training Conference. It was very engaging, with a modest humor.

Shore is good at explaining what autism is like to a “neurotypical” like me. I could start to imagine what his world might be like. Maybe autism is one extreme of a continuum of human experience. Perhaps it is, as Shore says, simply “a different way of being.”

Shore’s autobiography, Beyond the Wall, should be required reading by anyone involved with people with autism, including young adults with ASD. It’s sprinkled with comments from Shore, his mother, his wife and others, allowing the reader to see the story from different perspectives. Written with a touch of humor and ample doses of reality, it puts autism in an understandable framework. Through his life’s journey, Shore shows the importance of interdependence … as you see that the ability to communicate and engage with others is what ultimately results in his many accomplishments.

Shore’s stories about making friends, dating, and employment can be very helpful to others as they approach important milestones. His open sharing of growing up with some of the “pitfalls” of autism — and successfully navigating them — is one of his book’s most important features.

Nancy Pelosi’s National Summit on Children

by Donna Davidson

Last Tuesday I was asked to speak on Capitol Hill at House Speaker Nancy Pelosi’s National Summit on Children. I was honored to appear at the summit along with 20 other national experts and academics. The focus of the summit was on recent scientific findings and how they relate to early childhood education. The audience included 300 national leaders in research and services to children.

Donna Davidson with U.S. House Speaker Nancy Pelosi

I had the opportunity to share my experiences as a speech and language pathologist, an administrator of Easter Seals North Georgia and as the parent of a child with a disability.

I spoke of the importance of early intervention and treatment for children with disabilities. We need to improve the overall quality of services through the funding of research on best practices, as well as the development and implementation of a set of standards for early intervention practice. I cited the treatment of autism in young children as an example. We need research on best practices to support the effectiveness of these treatments so that both public programs and private insurance will cover these types of interventions.

I also spoke about the importance of strengthening linkages between Medicare Part C, Medicaid, private insurance, Temporary Assistance for Needy Families (TANF), and early care and education systems to ensure that decisions are being made in the best interest of children with disabilities.

The room was filled with energy and excitement and I left feeling hopeful. As Rep. Fattah of Pennsylvania stated in his closing remarks, the summit gives members a “baseline of knowledge that will help Congress come to grips with its responsibilities to children and families.”

Read Donna Davidson’s bio.

Autism’s best friend

by Beth Finke

Recently, my Easter Seals colleague Ellen Harrington-Kane emailed me an article from the Star Tribune about a school in Canada that trains dogs to help people who have autism.

I am blind and use a Seeing Eye dog to guide me safely to work each day. Ellen knew I’d be interested in this story because I know how valuable a service dog can be. I’m delighted to hear stories of people with other disabilities benefiting from dogs trained to do work or perform tasks for their benefit. To qualify as a service animal under the Americans with Disabilities Act (ADA), a dog must be partnered with a person with a disability and individually trained to do work or perform tasks for the benefit of that person.

I lost my sight when I was 26 years old. In 1991, after four weeks of training in Morristown, New Jersey, I flew back to Chicago on my own, guided by my first Seeing Eye dog, a Black Lab named Dora. It was the first time I’d traveled alone since losing my sight. Now I work with Hanni, a Golden Retriever/Lab mix.

The Seeing Eye is 77 years old this year. Along with other training centers, they fought long and hard for the right of people with disabilities to bring service dogs to public places. There’s still work to be done. For example, we’re still working to bring our guide dogs with us on some international flights.

I hear about people bringing pets into places and claiming they are service animals. This makes me sad. Dogs who aren’t truly trained for this kind of work don’t qualify as service dogs under the Americans with Disabilities Act. Their presence could ruin the good name we’ve built over all these years. I know that any regulatory line can look arbitrary. And I know pets provide comfort and stress relief by their mere presence. But I worry that a backlash could result from unqualified dogs showing up in public places.

I’m glad to hear that National Service Dogs (NSD) of Kitchener, Ontario is serious about training dogs to do work or perform tasks for the benefit of people with autism.

Notes from the Hill

by Katy Beh Neas

I’ve been doing public policy for more than 20 years, and I’ve seen a lot of issues rise and fall. The issues surrounding the needs of children and adults with disabilities keep rising to the top. I’m hopeful that we as a society will do something meaningful to help these families.

As Director of Congressional Relations for Easter Seals, I see a lot of similarities between how people with mental retardation were treated 30 years ago and how people with autism are treated today. Back then, people with developmental disabilities were considered too disruptive … incapable of holding down a job or living in their community. I’m hopeful that it won’t take us 30 years to change the way society feels about people with autism.

We have a good shot at getting funding for the Combating Autism Act. The CAA would fund activities that help people with autism live with equality, dignity, and independence. Congress is now beginning to decide on its funding and will make a final decision this summer. And the Expanding the Promise for Individuals with Autism Act is a bill that seeks to increase the supply of services for children and adults living with autism

I’ve been working to try to get groups that advocate for other types of people with disabilities to support autism-specific bills. So far, so good.

You can help too … ask your legislators to fund the Combating Autism Act and to support the Expanding the Promise for Individuals with Autism Act.

Read Katy Beh Neas’ bio

How do we define “appropriate” education?

by Patricia Wright

Under the Individuals with Disabilities Education Act (IDEA), students with disabilities have a right to a free, appropriate, public education. But how do we define what’s appropriate for each child that enters a school system and is in need of services?

Ideally, an Individualized Educational Program team collaborates to define what that individualized education should entail for each child. But collaboration doesn’t always result in agreement. Parents and the school system may not be able to come to an agreement and litigation may result.

Yesterday’s Supreme Court ruling is a demonstration of how far parents are willing to go to secure what they perceive as an appropriate education for their child. Mr. and Ms. Winkelman felt that their son with autism needed to attend a specialized school for children with autism. The school district disagreed and litigation began.

The Winkelmans couldn’t afford an attorney, so Ms. Winkelman fought for the right to represent herself and her son in federal court –- how many of us would feel that passionate about a topic … to be willing to act as your own attorney in federal court! Ms. Winkelman was that passionate about securing what she felt was an appropriate education for her child.

For more information on special education law, and advocacy for children with disabilities, visit Wright’s Law.

Watching Maurice at work

by Jim Williams

Last Friday night I attended an Easter Seals event where our 2007 adult representative Maurice Snell played a prominent role — as presenter of an award to one of our leading corporate partners, Safeway.

Maurice stood at the podium in front of hundreds of people and was in complete control — of himself and especially the crowd. While his part was scripted and on a teleprompter, he ad-libbed like a pro, even cracking a joke about how much more handsome he was behind the podium than on the televised image on the big screens in the room.

Knowing that most people are very frightened at the thought of public speaking, especially with glaring lights and television cameras, I could not stop thinking about what a remarkable and wonderful thing it was, watching this young man with autism literally control the crowd with his mastery and his personality.

Maurice’s performance also reinforced the power of early diagnosis and treatment. More and more, we need to work together to find ways to increase the availability of early diagnosis and early intervention. The results, as demonstrated by Maurice’s performance, are indisputable.

Maurice and former adult representative Chad Cunningham

Maurice and his family tell their own story. Take a look for yourself. I hope that we can get video of his performance last week up on the web for you to see. You’ll be incredibly impressed … as I was!

A great Celebration of Giving!

by Maurice Snell

I really enjoyed myself at the Easter Seals Celebration of Giving event a few days ago! Every year Easter Seals honors its corporate partners at this event. This year we gathered in Las Vegas.

I was fortunate to meet many people, especially former youth and adult representatives such as Marti Clark, Palmer Harston, Matty Gaughan, Ryan Odens, Chrissy and Elizabeth in honor of the late Lindsey Connelly, and my colleague and former adult representative, Chad Cunningham.

Chad and Marti cutting a rug at the welcoming reception

It also gives me great joy to run into Tori and Becky Boyles once again. This convention and my life wouldn’t have been complete without them. Overall it’s a great Celebration of Giving event. I thank all of the companies for their contribution to the Easter Seals organization.

The event ended with a great evening of entertainment and humor from Jim Williams and Elgin Manhard, along with the other representatives in the awards ceremony. I absolutely loved the theme of this year’s Celebration of Giving … Oscars night!

Easter Seals President Jim Williams brings the next “award” to the podium

I was fortunate to present the final award of the evening to Larree Renda, from Safeway, for her contributions and dedication toward Easter Seals. She is a very nice lady and wants nothing back in return; that was also the case of our other award recipients that evening.

Me with Jim Williams, Larree Renda and Elgin Manhard.

So, I would like to thank Jim Williams, Elgin Manhard and the other representatives for making me and Tori feel welcome at this prestigious event. We really enjoyed ourselves and met wonderful people from many different organizations. I encourage the people from these organizations to continue giving 100% to Easter Seals. There will always be hope provided from these organizations who lend a helping hand to those who are in need. That’s what we want in this world today, everyone helping out those in need, for a good cause. We must not give up hope — never.

Clearly, frankly, unabashedly disabled

by Ellen Harrington-Kane

Working in occupational therapy and rehabilitation, I’ve seen many people overcome challenges that are different from my own. This New York Times article is an interesting read about the concept of being “differently abled.” Whether a person has autism, cerebral palsy, depression or is a person with a different ethnic or religious background — they are a person first. A person with feelings, intellect, desires and goals.

Who’s to say at what point a person is disabled and not just doing things differently?

Read Ellen Harrington-Kane’s biography.

How do special moms celebrate Mother’s Day?

by Beth Finke

Mother’s Day can be a mixed blessing for a woman who has a child with a disability. For years after my son was born, I begged my husband not to get me a gift for Mother’s Day. “I’m not your mother!” I told him.

I knew my son wouldn’t be making me a card. He wouldn’t be presenting me with dandelions picked especially for me. My son has severe mental and physical disabilities — he doesn’t understand what Mother’s Day is.

I was determined not to let any of that bother me though. I knew I was a good mother, and I knew my son loved me in his own special way.

And then one year — my son must have been 5 or 6 — I burst into tears on Mother’s Day. “I’ll never get to celebrate like all the other mothers do!” I wailed. My poor husband didn’t know what to do.

This article on parental grief and adjustment to a child with disabilities reassures me I am not alone when it comes to feeling a bit of sadness on Mother’s Day. It lists Mother’s Day as one of the “common occasions of stress for families of a child with a disability.”

Ever since that outburst of mine, we’ve gone out of our way to celebrate Mother’s Day. This year we started early. Last weekend I needed new clothes. My husband came along on a shopping spree. When I couldn’t decide between two outfits, he whispered, “get them both.” He said our son wanted me to have new clothes for Mother’s Day. I wore one of the new outfits last night. We went out for a special dinner. I’m making up for lost time — instead of Mother’s Day, I now celebrate Mother’s Week!

And for the real Mother’s Day we’re heading to Wisconsin to visit our grown son in his group home. We’re proud of him. I’m proud to be his mom and happy to celebrate as a family.

I’d love to hear how other special moms have come to terms with Mother’s Day and how other families with special children celebrate each year — I’m always open to new ideas.