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.

Maurice Snell rocks on

by Maurice Snell

I wonder what lies ahead of me as I spend my days being back to the normal Maurice Edward Snell, without the perks of being the Easter Seals 2007 National Adult Representative kicking in. All I can say is — I really enjoyed this time of my life when I visited several interesting places and met many people whom I consider “friends,” or “family” for that matter.

Even though my reign as National Adult Representative is over on paper, I’m still not through. I will still be around my Easter Seals Metropolitan Chicago’s Autism Therapeutic School job and partake on some traveling opportunities even after my 12 months of stardom is in the rear view mirror.

The reality is — I’m not going anywhere!

For the most part, I enjoyed being a part of yet another Easter Seals National Convention in Washington, D.C. I consider my trip “entertaining.” There was a special guest appearance by Bon Jovi… sort of, along with a spectacular evening with my own band, the Naturals, who courageously came out from my hometown of Chicago to perform for the wonderful people of Easter Seals.

Those people were in for a bigger treat that evening with Beth Finke making a special appearance to sign her newly published book about her and her lovely dog, as they travel to many places together. Even though it may be the Naturals night, it was still Beth’s night to celebrate too.

Sadly, I spent my last day in Washington, D.C. saying farewell to many of my colleagues whom I’ve had the pleasure of knowing for so long. That includes the people I’ve visited previously, and of course, my friends from Easter Seals.

Evidently, this is not the last of me with Easter Seals, Inc. I will be around for moral support, especially to David Owens and Scottie Gaither and their families. A great year lies ahead of them.

Here’s a toast to a new year for the 2008 Child and Adult Representatives — Scottie and David — I wish them the very best of luck and encourage them to ROCK ON!

Thumbs up for Music Within

by Beth Finke

Donna Smith is a colleague of mine from Easter Seals Project ACTION in Washington, D.C. She wrote with details about a movie that sounds very interesting, I thought I’d share this with our readers. 
– Beth Finke

Thumbs up for Music Within

by Donna Smith

A limited release of a movie titled Music Within starts this weekend. It is based on the life of Richard Pimentel and his experience with the disability movement as well as the training he developed to help employers become more comfortable with their reactions to people with disabilities.

There’s a great interview with Pimentel speaking about the movie, plus a listing of all its openings, at Diversity World.

Larry King calls Music Within “the sleeper of the year” and everything I’ve read thus far indicates that it’s really good. I hope a lot of people go out to see this movie so that it will be released in a bigger way later.

SOS: Save our SCHIP

by Lynn Sinnott

In the “My day on Capitol Hill” post last week, I blogged about traveling with hundreds of Easter Seals advocates to talk to our legislators in Washington, D.C. Our goal was to encourage Congress to override President Bush’s veto of the State Children’s Health Insurance Plan (SCHIP) legislation.

By now you’ve heard — the House did not have the votes to override the President’s veto last week.

The failure to override the SCHIP veto was disappointing, of course. But still, I feel our day on Capitol Hill was NOT wasted. We feel really great about our effort and remain hopeful that a final SCHIP bill will become law.

Our visit to Capitol Hill put Easter Seals on the minds of our legislators. Speaker Nancy Pelosi mentioned Easter Seals several times in her statement to close the debate last week.

This morning, breaking news came in: the House of Representatives will vote TODAY on revised SCHIP legislation. Contact your representative now and ask them to vote in favor of this legislation today. The reauthorization of SCHIP is a priority for many human service and health organizations. Easter Seals, along with other advocacy organizations, encourages you to contact your legislators.