Dr. Shore understands autism

by Patricia Wright

Last week, the Department of Health and Human Services (HHS) announced the appointees for a new Interagency Autism Coordinating Committee. 

In a press release, HHS Secretary Mike Leavitt said:

“This important committee will play a key role in coordinating autism research, services, and education related to Autism Spectrum Disorder. I’m pleased that its members bring to the committee a wide range and great depth of expertise, including research and program administration, advocacy and personal experience with the condition.”

I was absolutely delighted to hear that Dr. Stephen Shore, a person with autism, has been tapped for membership. Shore is executive director of Autism Spectrum Disorder Consulting and serves on the board of the Autism Society of America (ASA). His books about autism are available at the Easter Seals and Autism bookstore, and you can read a review of his book, Beyond the Wall, on our blog.

I had the pleasure of meeting Shore at our 2007 Easter Seals Training Conference in April. Shore is a well-known public speaker, and at the conference he provided a personal perspective on the experience of living with autism. His presentation was truly one of the highlights of the conference. There were over 400 people in attendance that day and they walked away with a much better understanding of autism.

Individuals with autism have the greatest understanding of the nature of their disorder. Through advocacy efforts, people with autism can convey their unique needs to the community and support providers.

Shore’s appointment gives the Interagency Autism Coordinating Committee the “personal touch” it needs. 

Autism an issue in presidential campaign

by Katy Beh Neas

Autism is turning out to be an issue in the upcoming presidential campaign. Last weekend, presidential hopeful Hillary Clinton announced an autism plan that calls for significant resources in both research and services for people living with autism. Easter Seals helped shape some of the legislation that Clinton incorporated in her plan, and her policy experts came to Easter Seals for guidance.

Here’s what Easter Seals President and CEO Jim Williams said about Clinton’s plan:

“Senator Clinton’s proposal is a comprehensive plan that will help children and adults living with autism and their families today and in the future. It’s not enough to support research aimed at finding the cause and cure for Autism Spectrum Disorders. We must also increase the availability of services to help meet the needs of people with autism today.”

The autism plan proposed by John Edwards reflects Easter Seals’ priorities of access to services people need now. The same is true of the autism plan proposed by Barack Obama.

I searched the Web sites of four of the top Republican candidates — McCain, Giuliani, Thompson and Romney — and couldn’t find a mention of an autism plan. Hopefully, all of the presidential candidates will have a plan in the near future.

If your candidate of choice doesn’t have an autism plan yet, ask them to develop one.

A holiday greeting: sharing and caring

by Maurice Snell

Sharing is caring. That phrase can be best applied to the services of Easter Seals, especially through the holiday season. Now that Thanksgiving has come and gone, we have six weeks of 2007 left to cherish the good memories.

I have many things that I am thankful for this year. I wouldn’t be where I am today if it wasn’t for my family: my mother, father and sister. We, the Snell family, would like to give thanks to the people of Easter Seals for opening their doors to us. I know the Easter Seals doors will always be open, no matter what next step I choose to take in life.

I have battled through the 24 years of my life and I have won the battle. I have beaten the odds and became a new man, both a high school and college graduate, and finally, being employed by the Easter Seals organization.

All these things, I am thankful for.

I am thankful for having claimed the prestigious position of being Easter Seals 2007 National Adult Representative. Being the Adult Representative has given me new ways to express myself to the nation, along with meeting new people who share a common bond: stepping up to make a difference in today’s society.

That difference will change the lives of many people with disabilities across the country.

I was fortunate to have met the Boyles family, the Odens family, the Owens family, the Gaither family, along with many more. I am proud to have made a difference and impact people’s lives by visiting many places, especially places I even dreamed of going to.

Happy holidays and a great 2008 to the people at Easter Seals!  

Thankful … for autism

by Beth Finke

I am delighted to introduce guest blogger Barbara Gaither, the proud mother of this year’s National Child Representative for Easter Seals. I met Barbara, her son Scottie and the rest of the wonderful Gaither family at the Easter Seals National convention last month.
— Beth Finke

Watch a video about Scottie and the Gaither family and see how you can give help and hope to children like him.

What I am thankful for
by Barbara Gaither 

This time of year, I find myself reflecting on what I am most thankful for. I have so many things in my life that have truly blessed me, but one of the most amazing blessings is having an autistic son.

Now, I can’t say that I’ve always felt that way.

When Scottie was first diagnosed with autism, I was devastated. He was our last child and our first and only son. We pinned so many hopes and dreams on him when he was born, and with that diagnosis – those dreams seemed to be crashing down one by one.

As the years passed since that initial diagnosis in 2002, I’ve grown more and more thankful for him and his diagnosis. Many would think that I’m crazy — and maybe I am a bit, but he is such a tremendous joy to me and our entire family. He has taught me not to take the little things in life for granted — and by watching him grow and learn, I have learned so very much.

It’s simply amazing. Sometimes, I wonder what life without him would be like, or even life without him being autistic and I cannot imagine it. At this point I don’t even want to. I wouldn’t change a thing about him even if I could.

Being selected as the Easter Seals 2008 National Child Representative not only gives a lot more people an opportunity to know and love this wonderful little boy, but it gives us — as a family — a chance to give back. We can give back to Easter Seals as an organization because they have given us more than words could ever express. It also gives us a chance to offer hope to other families facing the darkness of autism.

I hope that somehow, by seeing and hearing our story, there will again be light.

So, as we gather to celebrate this Thanksgiving, I will give thanks for Scottie and his sisters, Sarah and Carly, as well as my husband Shannon and all of our family, including our wonderful Easter Seals family.

Watch a video about how Easter Seals helped our family.

To my Easter Seals family, thank you

by Jim Williams

With Thanksgiving coming tomorrow I find myself thinking of the Easter Seals family, a family I am so very thankful for.

From people with autism and other disabilities who are served by Easter Seals, to our volunteers, staff and those who support our work, we are all enriched by being a part of this wonderful Easter Seals family.

I want to send a personal thank you to each one of you for your involvement with Easter Seals.

To those of you who volunteer and contribute your time and talents to Easter Seals, thank you. You are a major part of what makes this organization great. Sharing your caring and enthusiasm makes us all better. 

To those who are members of the Easter Seals staff, thank you. Your hard work and dedication to our mission make dreams become a reality. 

To donors who support our work, thank you. You enable us to provide quality services that children and adults with autism and other disabilities – and their families – can rely on.

To our clients and their families, thank you. It is a privilege to provide the services that you expect – and deserve.

All of these parts working together form an organization that creates solutions for people each and every day. No matter what part of the organization you’re involved with, please accept my sincere thanks.

Enjoy the Thanksgiving Holiday.

Autism rocks in NYC

by Patricia Wright

Here’s a quiz. Name one topic that interests both Ladies’ Home Journal and VH1 Classic.

Give up? The answer is… autism.

These days if you Google “autism” you get more than 20 million hits — an overwhelming amount of information! Editors and television/film producers need access to reliable sources for the autism stories they run. That’s where the Autism Society of America and Easter Seals come in — we are two sources that the media can count on for accuracy.

Last week, communication specialists from the Autism Society of America and Easter Seals teamed up to meet with media contacts in New York City, and I was lucky enough to be invited along for the adventure. 

When I reviewed my schedule for our two day junket of media meetings, I was taken by the number of diverse venues who were interested in meeting with us about autism. The topic of autism can coexist next to an article on quilting in Ladies’ Home Journal while getting air-time next to Kurt Cobain on VH1 Classic.

Everybody wants to know more about autism. Many want to know what they can do to help.

VH1 Classic’s Rock Autism campaign gives viewers an avenue to contribute to the needs of those with autism. Other media outlets do their part by conveying information and resources, thereby helping to raise autism awareness. Easter Seals and the Autism Society of America will continue to contribute to that information, helping to ensure that the autism stories people read — and watch — are accurate. 

Restoring the rights of Americans with disabilities

by Beth Finke

It gives me great pleasure to introduce Denise Rozell, Assistant Vice President of State Government Relations at Easter Seals’ Office of Public Affairs, to our blog community. The following is her report from yesterday’s Senate hearing on the ADA Restoration Act.
— Beth Finke

Restoring the rights of Americans with disabilities
by Denise Rozell

Room 430 in the Dirksen Senate Office Building overflowed with people with disabilities and their advocates for the first Senate hearing on the ADA Restoration Act of 2007 (S.1881). The purpose of the ADA Restoration Act is to restore the original intent of the Americans with Disabilities Act (ADA) – that all people with disabilities should be protected from discrimination under the law.

It was particularly striking for me to have Sen. Tom Harkin (D.–Iowa), the lead cosponsor from the original ADA; former Attorney General Dick Thornburgh, one of the lead negotiators on ADA for the Bush Administration in 1990; John Kemp, a long time disability advocate who was involved in the passage of the ADA; and Chai Feldblum, a lawyer who negotiated the language of the ADA, all say yesterday that what the Supreme Court has done to the definition of disability is not what Congress, the Administration, the disability and the business community agreed to in 1990, and it must be fixed.

The business community witness, of course, disagreed and engaged in a spirited debate on the matter. But for me, she never seemed able to answer the questions:

• How can what the court is doing be right?
• How can someone who is an amputee, or has an intellectual disability or has epilepsy not be protected under the law?

While it was a little disappointing to have only two senators show up; part of the purpose of hearings is to “build a record” of why we need the legislation and what Congress and the Administration’s original intent was — and we certainly did that!

Plus, the two senators who were there — Harkin and Sen. Patty Murray (D.–Wash.) — are committed to this struggle. They understand the need for the changes to the ADA from a deeply personal level.

Harkin was the original cosponsor of the bill and had a brother, now deceased, who was deaf. He has talked at length about his commitment to this issue in large part because of his brother and has worked to pass disability legislation throughout his career in Congress.

Murray shared at yesterday’s hearing about her father, who has multiple sclerosis, using a wheelchair during most of her childhood and her commitment to this issue because of him.

I believe it is with this personal understanding and commitment to the civil rights of people with disabilities that will ultimately push through the legislation. You can do your part to support the rights of Americans with disabilities — urge your senator to restore the promise of the ADA!

The cost of treating autism

by Ellen Harrington-Kane

In a previous post titled “Autism…should health insurance cover treatment?” — I blogged about a parent who pushed through legislation in South Carolina to provide insurance coverage for autism services in that state. Now, a bill in the Ohio House would require health insurance companies to cover autism treatment in that state too — the same way they cover other medical conditions.

A November 8 story in the Columbus Dispatch called “The cost of treating autism” lays out two views of the debate. First, it quotes an insurance industry representative who worries autism is just another cause in a list of causes some people would like to see insurers cover:

“Each individual has the belief that their cause is the one that the government needs to find the solution to,” said Kelly McGivern, president of the Ohio Association of Health Plans. “We believe employers who buy policies should make the decision.”

On the other side of the debate, the story quotes Jacquie Wynn, director of the Center for Autism Spectrum Disorders at Nationwide Children’s Hospital:

Autistic children, she said, need 30 hours to 40 hours of intervention a week. She said 30 percent of families who come to the center for treatment leave because they can’t afford it.

“There’s a cost savings in the reduction of aggressive behavior or the self-care skills they learn. With short-term, early intervention in their early years you see the payoff in their lifetime.”

We all know autism is treatable, so of course it makes sense to have health insurance cover autism. A growing number of states are instituting laws requiring coverage of autism services. Let’s hope Ohio will be next.  

CVS: working with autism

by Paula Pompa-Craven

The U.S. Department of Labor’s Office of Disability Employment Policy and CVS Caremark announced last week that they’ve established a two-year nationwide alliance to promote the employment of people with disabilities. The effort will include technical assistance, training and education, outreach and communication.

CVS Caremark will share information, guidance and resources that will help to develop model programs for other employers, particularly in the retail and pharmacy services industries. 

As a Regional Vice President at Easter Seals Southern California, I’ve worked for years integrating adults with autism and other disabilities — many who had been living in institutions and very segregated settings — into communities. It is so important for businesses — like Easter Seals’ amazing partner, CVS — to provide opportunities for people with autism and other disabilities.

This is especially important after these young adults turn 22 and “age out” of many services and supports.

Beyond a paycheck, a job can help workers learn new skills, improve decision making, and take responsibility. A job gives a person enhanced community value; it creates new relationships beyond family and paid supports.

Ultimately, employment supports an adult’s progress towards equality, dignity and independence.

Hiring, retaining and advancing employees with disabilities is just good business. At Easter Seals, we are proud to have a business like CVS as a partner.

Book review: Ellen Notbohm’s “Ten Things Every Child with Autism Wishes You Knew”

by Beth Finke

Ellen Notbohm’s Ten Things Every Child with Autism Wishes You Knew gives readers a broad overview of the symptoms associated with Autism Spectrum Disorder (ASD). It’s not available in an audio format yet, but the book is such a quick, short read that volunteers were willing to read it aloud to me.

We all know that behaviors and symptoms can be extremely different in every child diagnosed with ASD – that makes it difficult to list the “ten things” each child with autism might want you to know. Notbohm makes a good attempt, though, and she presents the information in a way that is easy to understand.

People who care for children with autism don’t always have a lot of time to read books on the subject. If you only have time for a quick read, this one is a good choice.