My day on Capitol Hill

by Lynn Sinnott

Yesterday, I was among hundreds of Easter Seals advocates who climbed into buses and rode to Capitol Hill. We descended on our senators and representatives to talk about the State Children’s Health Insurance Plan (SCHIP). Our goal was to encourage Congress to override President Bush’s veto of SCHIP legislation.

I traveled with volunteers and staff from our four Easter Seals affiliates in Florida. It was inspiring to see Easter Seals folks walking through the halls and engaging our representatives. I dropped off an information packet for Rep. Lincoln Diaz-Balart (R. – Fla.) and told his staff about our new Autism Center of Excellence in Daytona Beach. 

Then I trekked to Rep. C.W. Bill Young’s (R. – Fla.) office — they were very supportive of the SCHIP reauthorization and had already signed on as a sponsor for the Americans with Disabilities Restoration Act — yea! They received a brochure about our Center, too! 

Next, I visited Rep. Tom Feeney’s (R. – Fla.) office. Feeney had toured our Easter Seals facilities last month and actually saw firsthand the Autism Center of Excellence.

I also met with Rep. John Mica (R. – Fla.), who has been a good friend of Easter Seals in the past. Mica has helped us with several bills supporting people with disabilities, and was very interested in signing on as a sponsor for the ADA Restoration Act. Yea! At Mica’s office, I ran into Mike Matousek, who works for Mica and is the son of Diane Matousek. I know Diane from my work in Daytona Beach. Small world!

Those meetings were all in the afternoon — we had already met with our senators that morning!

One meeting went especially well. Sen. Bill Nelson (D. – Fla.) was on board and supported our efforts! The other visit with Sen. Mel Martinez (R. – Fla.) didn’t go quite as well, but we did a good job explaining our perspective and the need for the override.

At lunch I had a chance to sit down and talk with other Easter Seals folks — I heard very encouraging feedback about their visits.

One bit of advice though: if you ever have a chance to visit Capitol Hill, wear comfortable shoes.

I did, and I was very glad! After seven hours on the Hill, I was very tired! And my feet still do hurt a bit, I must admit. But I’m ecstatic about what we accomplished, and now I think everyone should pay a visit to Capitol Hill and their representatives — it’s a great experience!

Read Lynn Sinnott’s biography.

Mr. Simon goes to Washington

by Beth Finke

What an exciting day on Capitol Hill!

Yesterday, 300 volunteers and staff from Easter Seals attended over 250 meetings with their senators and representatives in an effort to urge them to override President Bush’s recent veto of bipartisan State Children’s Health Insurance Plan legislation.

The day kicked off with a press conference in the Cannon House Office Building. There, Sen. Nancy Pelosi (D. – Calif.), Sen. Harry Reid (D. – Nev.) and Sen. Orrin Hatch (R. – Utah) spoke passionately about the need to override Bush’s veto.

The real highlight of the press conference came when musician Paul Simon, also a co-founder of the Children’s Health Fund, spoke.

“The President’s veto of the reauthorization of SCHIP appears to be a heartless act,” said Simon. “I’m here today to ask those of you who supported the veto to re-examine your conscience, to find compassion in your heart for our most vulnerable and sweetest citizens, our children. I am asking you to change your vote. If you do, I believe it will be one of the proudest days of your life.”

Watch the video of Simon urging Congress to override the President’s veto.

Easter Seals Vision 2010

by Beth Finke

I’m writing today from the Easter Seals National Convention in Washington, D.C. I would have posted something yesterday, but I was too busy!

Yesterday started with a convention breakfast at the Capitol Hilton. Easter Seals President and Chief Executive Officer James E. Williams, Jr. spoke at the breakfast. The day ended with a special event for the Presidents’ Council at the National Museum of Women in the Arts. The speaker at this event was… me!

First, about the morning speech; Williams spoke about Vision 2010 – Easter Seals’ plan to extend its reach to 5 million people by the end of this decade.

Williams described how Vision 2010 will enhance direct service and advocacy in four areas of great need: Children’s Services, Older Adult Services, Veterans Services and Autism Services.  

When it comes to autism, Vision 2010 will: 

• strengthen Easter Seals programs for individuals with autism
• ensure that children receive early diagnosis and treatment
• implement new models of “best practices” for care and support across the lifespan
• develop strategic partnerships to advance awareness, public policy and funding initiatives
• create networks offering support and information to families, caregivers and professionals 

My speech last night mentioned Vision 2010, too. I talked about how the computer training I’ve received at Easter Seals helped me gain independence, and how support for Vision 2010 will make me just one of five million that Easter Seals has helped by the end of this decade.

It’s all very exhilarating – now, I can’t wait to hear what happens tomorrow at Capitol Hill Day!

Books about autism

by Beth Finke

Our blog readers are bookworms! In the six months since we launched the Easter Seals and Autism blog, it seems the posts that get the most comments are about… books!

Many of you have suggested different books about autism. And as the recommendations come in – I put them on a list for us to review for the Easter Seals and Autism bookstore. Our bookstore features books reviewed on this blog, and every time someone orders a book through our bookstore, a portion of that sale from Amazon goes to Easter Seals.

The list of suggested books is growing fast. So fast, in fact, that I’ve realized our experts at National Headquarters can’t keep up.

What to do?

Call on Easter Seals’ Autism Spokespersons Network for help!

Easter Seals’ network of autism experts are professionals who work in markets across the country providing help, hope and answers for families living with autism. Members of the network are often interviewed as local media resources and included in discussions, articles and news segments about autism. They seemed a perfect choice to add to our panel of book reviewers.

Those of you who have posted comments about books should be on the lookout for these new voices on our blog — they’ll be reviewing your suggested readings. Those of you who haven’t commented yet: if you know of books you’d like our panel to read, please comment to this post and let us know!

Pop culture and autism

by Patricia Wright

I am amazed at the recent volume of stories about autism in pop culture media. The demand for information and awareness regarding autism is significant; and it is reflected in the volume of pop culture venues that take autism on as a topic of interest.

There was Jenny McCarthy in People magazine, Oprah has dedicated shows to the topic and even Law and Order has included characters with autism in episodes. Popular media can certainly garner significant attention and raise awareness but I worry about some of the information that might be conveyed about autism via this venue.  

By nature, pop culture media includes opinions, personal beliefs and individual stories in both fictional and real contexts. For a parent, filtering all of this information and its applicability to their child must seem daunting.

Jenny McCarthy spoke eloquently about the intervention approaches she chose for her child. As a person with financial means, living in a major metropolis — this is the path she selected. 

On Oprah, families shared their personal experiences. One father even referenced a mainstream movie “my son was not like Rain Man” when he was describing coming to terms with his son’s diagnosis. The movie Rain Man is often cited as a reference point for autism. And indeed, most individuals with autism are “not like Rain Man.” 

Perhaps pop culture can work to raise awareness of autism but families need reputable sources that they can use to educate themselves about autism. Popular media usually tells a compelling personal story — but this story is by nature unique, and it is not applicable to the entire autism community.

Sources such as the Centers for Disease Control’s Autism Information Center and the Autism Society of America look at the big picture of autism. Information on these sites is meant to educate people about autism — not to showcase one compelling story about an individual with autism.

I applaud the efforts of pop culture and their desire to address the topic of autism. I would like to request that these stories include information and content from sources — such as the Autism Society of America and the Autism Information Center — so that parents who read these articles have a reliable source for information.

Easter Seals, autism and SCHIP

by Katy Beh Neas

A grandmother commented to last month’s blog about the expansion of SCHIP. She was concerned about her grandson – he has autism and needs dental insurance, but the family doesn’t qualify for the State Children’s Health Insurance Program (SCHIP).

SCHIP is a top legislative priority here at Easter Seals. We have been working to see that all children who are eligible for its coverage can be enrolled.

Nearly 4 million children are eligible, but can’t get the coverage because of funding limitations.

Last week, President Bush vetoed SCHIP legislation that Easter Seals supports. The bill that was sent to the President would make it easier for children to get health services, including dental services — the very thing the concerned grandmother who commented to our blog needs for her grandson with autism.

In addition, this bill would have allowed states to use SCHIP funds to enable a child to be enrolled in his/her parent’s insurance plan, making it easier for everyone because the family would only have to navigate one insurance plan’s rules.

There is still a chance that Congress can reverse the President’s veto and the improvements to SCHIP can become law. Take action — tell your senators and representatives to override the President’s veto of SCHIP.

When our national convention is held in Washington, D.C. next week, we will take our message to Capitol Hill. SCHIP must be strengthened and continued — our nation’s children deserve the right to be healthy.

Jenny McCarthy, louder than words

by Beth Finke

I was on vacation last week and during some long flights, I had time to think over some of the things I’d heard about Jenny McCarthy’s September 18 appearance on the Oprah Winfrey Show. McCarthy was on tour promoting Louder Than Words: A Mother’s Journey in Healing Autism.

During her Oprah appearance, McCarthy mentioned how her son Evan’s autism diagnosis had a negative affect on her marriage. The divorce rate among parents of children with disabilities is something I’ve blogged about in a previous post — “Divorce and disability: is it all a lie?” But one thing McCarthy said regarding her feelings after divorcing Evan’s father really stuck in my head.

When I got home from vacation, I looked the quote up.

“After the divorce, even though it felt good and the right thing to do, I felt, as I’m sure many mothers with children who have autism feel, ‘Who in the heck is going to love me with my child who has autism?’ I don’t care how big your boobs are or blonde your hair is — you’re going to feel that way.”

Now, that’s the sort of quote that sticks with you. Truth is – it’s sad.

What’s even sadder, though, is the fact most single moms with children who have autism or other disabilities don’t even think about being loved. They don’t have time. They’re too busy raising their children.

Easter Seals programs across the country provide a wide variety of interventions that help individuals of all abilities, including those with Autism Spectrum Disorder (ASD).

Our Web site lists the Easter Seals affiliates that provide services near you — give it a look.

Single moms – and all parents and caregivers – need all the support and services they can get when it comes to raising children with autism and other disabilities.

Wrap-up to a great year!

by Maurice Snell

First of all, I want to say that I have really enjoyed my year as Easter Seals’ 2007 National Adult Representative. Even though it might have been a demanding job, I truly enjoyed the opportunities that I endured for the past 11 months. Now, entering my 12th and final month of this prestigious honor, I know the next Youth and Adult Representatives will perform their services with honor and represent the Easter Seals organization in a great way.

As the 2007 Adult Representative, I was fortunate enough to travel to several different cities and states across the United States. I’ve traveled to places such as Puerto Rico (both San Juan and Ponce), New York (White Plains), San Francisco (twice), Las Vegas (twice), Dallas (three times), and cities in my home state of Illinois. A lot of people welcomed me and my family with open arms and we were blessed to meet the courteous people at many different Easter Seals affiliates and deliver my message to those individuals.

Maurice Snell and his band The Naturals performed Stevie Wonder’s ‘Living for the City’ at Brookfield Zoo during the September 15, 2007 Chicago Walk With Me event

I would like to wish the team at Easter Seals, Inc. the greatest of thanks for showing me the way – the in and outs while being the Adult Representative for this year.

I also thank those from many different Easter Seals affiliates for extending their invitation to me and my family to discuss my experiences with autism, the neurological disorder that has affected me most of my life.

I, in turn, am grateful to meet many people of Easter Seals, prestigious organizations such as Safeway, Quixtar, Food Lion, Century 21, and others, along with different families who aim to help a very common cause, such as autism.

The message has to be delivered to people across the country.

Without people like you supporting me through this period, I wouldn’t have gone anywhere.

As always, I will stay true to the Easter Seals organization, whether it is in Chicago or anywhere across this country. I look forward to telling the rest of my family, friends, and coworkers of the great year I have experienced.

I look forward to seeing you all again in the future!

Effective services requires financial support

by Patricia Wright

When a child is diagnosed with autism, parents do what they know best – pursue the most effective intervention services they can find for their child. This is what Joe and Elizabeth Micheletti did for their son Jake when he was diagnosed with autism two years ago. They found an effective intervention.

What they also found is that their medical insurance would not provide payment for the treatment. The Michelettis pursued this denial of coverage within the court system – and they won.

Coverage for autism intervention is a dilemma. The data demonstrates that intensive intervention at a very young age promotes the best outcomes.

Intensive intervention can be expensive; families need support to fund these services for their young children. Health insurance is often the first funding source pursued by parents. However, most insurance companies do not provide coverage for intensive early intervention.

The Michelettis pushed the health insurance system and received payment for Jake’s services.

Some states, like Texas and Pennsylvania, have legislated coverage for autism, but these states still do not provide full coverage for all of those in need. Unfortunately, there are many young children with autism who are still left without appropriate services.

Effective early intervention services grants the best opportunity for young children with autism to develop to their greatest potential. Insurance coverage, proper funding for state educational agencies and a societal commitment to providing appropriate services is what our young children need to achieve their potential.

Have disability, will travel

by Beth Finke

A quick note from your Easter Seals autism blog moderator – just want to let you know I’ll be away from the blog for a week. A friend is marrying a woman from Poland, and my husband and I are flying to Warsaw for the wedding.

I’m feeling less anxious about this trip than I have in previous ones — probably because this time we won’t have to find a caregiver for Gus while we’re away. Our son, Gus, was born with severe mental and physical disabilities. He is 21 now, uses a wheelchair to get around, and lives in a wonderful group home. When he still lived with us, he would either travel along on vacations or we’d find a babysitter qualified enough to take care of him.

I honestly can’t tell you which was the easier route.

Those of you with children who have autism or other disabilities know what it’s like to plan a family vacation – you take a deep breath, pack up all the prescriptions and medical equipment, cross your fingers and pray to the travel gods that nothing remarkable happens, and there are no “incidents.”

There can be wonderful rewards, of course: I’ll never forget our beach vacations, Gus sitting on the deck, hand held high up in the air, spreading his fingers to feel the ocean breeze.

Simple pleasures.

I am looking forward to enjoying my own simple pleasures during this trip to Poland and have been unusually casual about preparing for it. I am leaving my Seeing Eye dog with friends, and to be honest, without having to pack for Gus or Hanni, the trip seems like a cinch.

For a first-hand look at what it is like to travel with a disability, I highly recommend Bridget Houlihan’s Wheels with a View blog. Houlihan has a long history with Easter Seals — she spent her first summer at Easter Seals Colorado Rocky Mountain Village camp when she was 9 and ended up serving as a counselor there in her teens. Houlihan says the self-confidence she gained at camp, doing things that kids with disabilities weren’t supposed to do, is an important part of who she is today. 

Houlihan was born with cerebral palsy. Now in her mid-20s, she’s among the first generation of kids with disabilities to attend neighborhood schools and go on to college. She was among the first Rotary International Scholarship students with disabilities, studying for a master’s in media, which she received in August 2001.

Her blog is a journal of trips to New York City, Las Vegas and Wrigley Field rooftop decks – this woman has a sense of adventure!

As do I.

I’m looking forward to my week away. I’ll be leaving you in the VERY capable hands of Danny Yuen, a Technology Opportunities Program (TOP) intern here at Easter Seals Headquarters.

More on the TOP grant in a future blog. For now, I’m off to O’Hare.