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.

Partnering with your child’s school: a guide for parents

by Beth Finke

A November 2 Associated Press article “Autism ‘epidemic’ largely fueled by special ed funding, shift in diagnosing” reports that “autism has become… a ticket to a larger range of school services and accommodations.”

Trouble is — it’s not always easy for parents to figure out which services and accommodations are available to their children. There were times that Mike and I didn’t find out about available services for our son Gus until the school year was nearly over.

To that end, the HSC Foundation produced a new booklet to help parents learn about available resources.

The booklet also offers information to help parents develop a partnership with their children’s schools. The information is available in English and Spanish, and the content has been reviewed by groups of parents, youth, and educators. The booklets are produced in partnership with George Washington University’s Graduate School of Education and Human Development, the Council for Exceptional Children and the National Association of State Directors of Special Education.

Give this booklet a look — we all know how time flies. The school year will be over before we know it!

An electric experience in New Hampshire

by Katy Beh Neas

Today my colleague at Easter Seals’ Office of Public Affairs, Jennifer Dexter, is guest-blogging from a presidential candidate’s forum on disability in New Hampshire. Jennifer is Assistant Vice President of Government Relations and works on housing, aging issues, assistive technology, telecommunications, transportation, and AgrAbility appropriations. It sounds like the forum is an exciting experience.—Katy Beh Neas

An electric experience in New Hampshire
by Jennifer Dexter

I’m on lunch break at the first Presidential Candidate’s Forum on Equality, Opportunity and Access in Manchester, New Hampshire.

The forum is sponsored by over 20 national disability organizations, including Easter Seals. All major presidential candidates were invited to come and present their vision for the future of U.S. national disability policy. There are about 500 advocates in the room from New Hampshire and around the country. So far, Senators Hillary Clinton, Chris Dodd and Joe Biden have spoken and this afternoon Representative Dennis Kucinich, Senator John McCain and Senator Mike Gravel will address us.

I had to take a minute to share how electric this experience has been. To see people with disabilities treated as a significant voting block gives me hope for the future — that the needs of people with disabilities and their families will be prioritized by our leaders in a way they haven’t been before.

One of the most striking things about this experience has been how each candidate has clearly taken time to figure out what will set them apart in the area of disability. As a lobbyist, I know that there are a few “go to” issues that politicians usually identify as key for people with disabilities, things like the Americans with Disabilities Act and special education. The speakers here have certainly addressed those topics, but they’ve also each found something unique and important to them that will address an unmet need of people with disabilities.

It’s truly a testament to the importance of flexing our political muscle and making sure that candidates know that people with disabilities will have a significant say in who will be our next President. You can join us by signing up for our Legislative Action Network enewsletter.

Book review: Karen L. Simmons’ “Little Rainman”

by Donna Davidson

Little Rainman: Autism — Through the Eyes of a Child takes what many children with Autism Spectrum Disorder (ASD) experience and puts it into words and pictures. It would be a wonderful book to share with children who have been diagnosed with autism. More importantly, I think this is a wonderful book to share with children in kindergarten and elementary school — it helps explain what life may be like for their peers who have autism.

As an Easter Seals Administrator and Speech and Language Pathologist, I spend a lot of time reading clinical textbooks, business books, and articles on the latest in best practices. It isn’t often I get to read a book written through the eyes of a child.

Little Rainman was a breath of fresh air. It was so revealing to hear a child explain the symptoms of a complex diagnosis that has baffled the most brilliant physicians, clinicians and researchers.

Simmons’ book describes symptoms and characteristics that we, as parents and clinicians, have observed in some children diagnosed with autism. The great thing is, she does it in language that’s easy for children with and without disabilities to understand.

This book helps readers understand that children with autism are not “strange” — they just process information differently. And just like all of us, people with autism have some skills that are strengths, other skills that are somewhat challenging.

Thanks to Karen and her son Jonathan for sharing this book with us.

Listening to families: early autism screening

by Scott Fogo

By now you’ve all seen the wave of media coverage about the American Academy of Pediatrics’ (AAP) two most recent reports on autism.

A national AP article broke the story Monday. Truth is, though, that AAP has been encouraging its membership to conduct early screenings for some time. 

I was reminded, after hearing the stories from the AAP, about one of their own publications: “The Pediatrician’s Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children.” This 2001 report suggests that “early diagnosis is dependent on listening to the parents’ concerns about their child’s development.”

Their studies showed that most parents were concerned by age 18 months — it took six months for them to seek help, and then when they did – 50% were reassured and told not to worry. The study found that the “usual interval between the parents’ first awareness of a concern and a definitive diagnosis of autism was almost four years.” 

The pediatrician has the greatest opportunity in the first two years of life to screen. But step one in the screening is to listen to families!

That’s where Easter Seals comes in – providing children and adults with autism critical services, treatment, and support.   

Read Scott Fogo’s biography.