Jim Williams, president and chief executive officer of Easter Seals, said, “Transportation is literally the link to schools, the work place, and every other destination in community life.”

Employment, recreation, education … accessing all of these experiences require transportation. One thing the group could agree on is that the current public transportation system has many barriers. Inaccessible fixed route systems, limited para-transit and a complete lack of resources in rural areas were all mentioned.

The people at this event were focused on solutions. Solutions such as incorporating transportation education into high school curriculum standards, providing sensitivity training to public transportation operators, and promoting self-advocacy skills throughout a student’s years in special education.

The conversation at the roundtable was just the beginning. This group and others will continue to work towards ensuring that youth with disabilities have the transportation they need to lead the lives they deserve.

I’m an MSU student. I have a son that suffers from many disabilities. He’s disabled for the rest of his life. He’s 11 years old. He suffers from autism. He has been sick with these ailments ever since he was nine months old. My question to you is, I rely heavily on his Medicaid to support good health care for him. What, with this reform, would happen with his Medicaid?

When it comes to health care, Americans with autism and other disabilities are arguably the most vulnerable population in the nation. Easter Seals believes that health care reform must guarantee that all Americans, including people with autism and other disabilities, have access to high quality, affordable health care that meets their individual needs.

In June, Easter Seals staff testified before the Senate Committee on Health, Education, Labor, and Pensions (HELP), telling them that meeting the needs of people with autism and other disabilities is an important component of health care reform. Mary Andrus, Easter Seals Assistant Vice President for Government Relations and Co-Chair of the Consortium for Citizens with Disabilities’ Health Care Task Force, told committee members that, “an essential element of health care reform is ensuring that vulnerable populations have access to coverage that meets their care needs.”

It sounds like her message got through to the top. At the health care town hall meeting on Friday, President Obama responded to the concerned mother by first thanking her for sharing her story. Then President Obama told her how lucky her son is to have such a heroic mom. After waiting for the applause to die down, the president answered her question about Medicaid.

If you currently qualify for Medicaid — your son currently qualifies for Medicaid, he would continue to qualify for Medicaid. So it would not have an impact on his benefit levels and his ability to get the care that he needs.

Please contact your lawmakers and urge them to support health care reform that promotes quality health care for people with autism and other disabilities.

FRIENDS WHO CARE® is an interactive educational program designed to help children understand what it means and how it feels to be a young person with a disability. The program shows kids how their peers with autism and other disabilities adapt to live life, go to school make friends and play. The goals of the program are simple: to encourage typically developing children to accept their peers with disabilities as people first, and to find ways to include everyone in school and after-school activities.

Now you can read an Education Week interview where Patricia discusses the curriculum with senior columnist Michael F. Shaughnessy. As the national director of autism services for Easter Seals, Patricia is an old hand at these interviews. She knew just what to say when asked about what was included in the kit and where to find more information.

What types of ancillary materials are available?

The materials include a teacher’s guide, activity sheets, a poster, bookmarks, and online videos.

How can teachers can a copy of this free curriculum?

The fun and colorful components can all be downloaded separately for use at home or in the classroom at www.easterseals.com/friendswhocare.

And of course, she handled the final “Did we forget anything?” question perfectly:

What have I neglected to ask?

Let me tell you a little more about Easter Seals. Easter Seals is a leading non-profit provider of services for individuals with autism, developmental disabilities, physical disabilities and other special needs. For 90 years, Easter Seals has been offering help and hope to children and adults living with disabilities, and to the families who love them. Through training, education and support services, Easter Seals creates life-changing solutions so that people with disabilities can live, learn, work and play.

She lived long enough to see her hopes fulfilled — it’s impossible to count the number of our own Easter Seals clients who benefit from the sports training and competition they receive by participating in Special Olympics. Two perfect examples? Team USA member Jamie Smith, and our blogger Maurice Snell.

Jamie Smith, a graduate of Easter Seals’ Autism Therapeutic School in Chicago, traveled with the Special Olympics to Shanghai, China in September, 2007 and brought home two bronze and two silver medals for powerlifting.

Earlier this year Maurice applauded Jamie Smith’s efforts in a blog post about Special Olympics:

It has helped change the lives of many different people — including my colleague, Jamie Smith. Jamie went to Shanghai, China and did extraordinarily well -– he won four Olympic medals!

Maurice benefited from his own participation in the Special Olympics. He was diagnosed with autism when he was six years old. At age seven, he and his family visited what today is the Easter Seals Therapeutic Day School, a place where students with autism ages 3 to 21 receive not only an education and therapy, but recreational services, too. During Maurice’s 10 years at the school, a team of professionals helped him develop his speech, language and communication skills. They helped with his social skills, too: he learned to swim and play baseball, and competed in the Special Olympics. Today, Maurice works as a classroom aide and mentor at his former school.

I was an active participant in the Special Olympics during my days at the Therapeutic School and Center for Autism Research. I enjoyed the opportunities to participate in various events and meet many different people. To me, Special Olympics kept me going throughout my life. It motivated me to achieve higher standards and make me grow as a man. I’m grateful for Special Olympics and Easter Seals’ involvement in Special Olympics.

I don’t think I can say it any better than Maurice did. So many lives have been changed for the better thanks to Eunice Kennedy Shriver’s work. Thank you, Eunice. You will be missed.

FRIENDS WHO CARE® is an interactive educational program designed to help children understand what it means and how it feels to be a young person with a disability. The program shows kids how their peers with autism and other disabilities adapt to live life, go to school, make friends and play.

The goals of the program are simple: to encourage typically developing children to accept their peers with disabilities as people first, and to find ways to include everyone in school and after-school activities. And best of all: it’s free!

FRIENDS WHO CARE® was originally developed in 1990 with a grant from Ronald McDonald House Charities. Now, thanks to sponsorship from our long-time partner, the Friendly Ice Cream Corporation, Easter Seals has significantly updated the resource and we’re re-introducing the FRIENDS WHO CARE® curriculum just in time for the new school year.

The curriculum explores a range of disabilities and includes specially-crafted learning activities, hands-on exercises, guided discussions and guest guidelines. It starts with an introduction to disabilities, and looks at vision, hearing and physical disabilities and then at learning disabilities — including a new section on autism, ADHD and intellectual disabilities. When students gain a better appreciation of what it means to live with autism or some other disability, they are more accepting of their classmates who have those disabilities. Our hope is that children quickly realize, “Kids with disabilities can be my friends, too!”

Download theFRIENDS WHO CARE® curriculum for free and check it out for yourself. The fun, colorful components can all be downloaded separately for use at home or in the classroom.

When I first met Bill from the radio station, I noticed something interesting. He, like my Easter Seals colleague Beth Finke, is blind. And just like Beth, Bill uses a guide dog to assist him living in society. Bill and Beth both have something in common with me, too: we are all die-hard White Sox fans!

Bill, the radio announcer, was highly interested in the controversial topic of autism. But Sunday’s conversation wasn’t controversial at all — it was simply straightforward. Patricia talked from her expertise about autism and how it affects some families. She went on and talked about some services for individuals with autism. I talked about how autism has affected me and my family and how I managed to strive to my highest achievements — such as graduating from high school and college.

Overall, Patricia and I were glad to have shared our thoughts of autism with a cordial man such as Bill. From his point of view, autism can be a controversial topic and he is right when he says there will be many debates about what causes autism. But what was said during the interview on Sunday was knowledgeable. Families of individuals with autism who listened to the interview will have had a helpful learning experience. There are many families still in need of autism services, so we continue to spread the word about Easter Seals to today’s society. You can find services at an Easter Seals near you at our Web site.

After the interview was over for me and Patricia, I was on my way to the Sox game to root them on to victory. That didn’t quite happen on Sunday –- the White Sox lost to the Orioles, 2-10. But I still felt good, knowing our radio day was a big win. “You can put that on the board…..YES!”

The child born in 1980 – the year the American Psychiatric Association first added autism to its list of known mental disorders – is now nearly 30 years old.

The story tracks a couple of young adults with autism, including Eric Foley. Eric graduated from high school at age 20. He has lived with his parents Rob and Donna Foley ever since.

Rob and Donna have worked hard to leave Eric financially secure, but for Donna, the question of Eric’s future is not as simple as money.

“I’m 60. I’m not going to live forever,” Donna said. “Who is going to care for him? Who will treat him with tolerance and patience? Who will love him?”

The story credits our Easter Seals Living with Autism Study for providing quantifiable information about the services and supports that families living with autism desperately need.

In 2008, Easter Seals conducted a national study and found that 1.5 million Americans have an autism spectrum disorder. Twenty percent, or 300,000, of those people are age 22 or older.

The details of the study told a story that parents of children with autism have known all along.

• 76 percent of teenagers with autism over the age of 16 have never looked for a job.

• 79 percent of parents of children with autism are “extremely” or “very” concerned about their children’s future independence. Of “typical” parents, by comparison, 32 percent are equally concerned.

• 79 percent of adults with autism still live at home.

Easter Seals stands out as the nation’s leading provider of services and support for children — and adults — living withautism. The one consistent message Easter Seals hears from the families we serve — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need. More than a generation ago, Easter Seals was front and center during the polio epidemic, working tirelessly to help children and adults with polio gain the skills necessary to live independently. And now, Easter Seals is working internationally to provide help, hope and answers to families living with autism today by delivering personalized services and treatments, as well as advocating with government to encourage financing for research and improved access to services and supports for people with autism.

Every family living with a person who has autism faces unique challenges. Early detection and intervention are the essential first steps. There is an urgent need for increased funding and services — especially for adults with autism.

We want to help change all of this and make a difference for families living with autism today. Help us change the lives of people living with autism by becoming a volunteer or donor — visit www.actforautism.org to learn more about autism, read the findings of the Easter Seals Living with Autism Study, and find services at an Easter Seals near you.

Harry Potter and the Chamber of Autism

July 24th, 2007

What can reading a Harry Potter book teach us about autism? Well, ask a teenager with autism who also happens to be a Harry Potter fan — he can tell you!

James Williams is 18 years old and speaks about autism regularly at conferences. He spoke at the Autism Society of America (ASA) conference I recently attended with others from Easter Seals. The speech James gave at the ASA conference was about being “In Search of the Proper Autistic Friend”.

The transcripts to all of the speeches James gives are available at his Web site – that’s where I found out how someone with autism could relate to the characters in Harry Potter books. In his cleverly-titled speech, “Harry Potter and the Chamber of Autism”, James describes how Harry Potter sometimes has trouble approaching his friends. James can relate. He also relates to Hermione, who obsesses over wizardry, fixates on specifics and is often accused of being a know-it-all.

Most importantly, James says that Harry’s feelings of relief after being “diagnosed” as a wizard are similar to his own feelings of relief being diagnosed with autism. Before Hagrid told Harry that he was a wizard, Harry had no idea that wizards who are angry tend to use magic even if they do not want to.

“Kids with autism often make things happen that they can’t explain,” James says. “And if they don’t know they have autism, they don’t know why, no matter how hard they try, they are always getting in trouble.”

Harry did well when working with teachers who acknowledged and worked with his special talents and needs. James can relate.

Easter Seals needs you to tell Congress to act now on health insurance legislation — this could be the “make or break” week on securing the federal health care reform legislation we need.

Take action — tell Congress. People with autism and other disabilities need health insurance reform now.

Last week Milwaukee Fox 6 TV featured an interview about our June 19 Walk With Me event.

The interview gave me an opportunity to spend some quality time with Stephanie Mayer and her son, Kyle. Kyle has autism, and he received a scholarship for inclusion in our P.L.A.Y. Project (Play and Language for Autistic Youngsters) last year.

We all had to wait over 30 minutes for the interview to begin, and Kyle was a pleasure to be with. He admitted he was a little nervous, and he held tight to his Buzz Light-Year and Woody toy for comfort. Eventually he cuddled next to his Mom and asked, “can I sit on your lap?”

Using cues from both P.L.A.Y. and new techniques from Applied Behavioral Analysis (ABA), Stephanie encouraged his positive behavior. You would never know the struggles the family had with Kyle just a couple years ago. I knew, though — and I was truly amazed at Kyle’s progress.

A number of months ago, the family allowed our P.L.A.Y. Consultant Amanda Dobberstein to share a few videos of Kyle. The first session showed Kyle playing with three sets of objects in less than a two minute segment. Kyle had his back to his Mom and little sister during the entire period. Kyle’s mom kept asking questions, trying to engage Kyle, but he was pre-occupied. No interaction, no warmth — just sharing a room, not sharing an experience.

Now, a year later he is cuddled up next to Mom with his toys in his lap using his “big boy voice.” Of course, moments before we headed to the studio, Kyle asked his mom, “can I go to the bathroom?” Mom answered, “not right now, dear.” Kyle waits. Patiently.

Throughout the interview Kyle sits quietly, the bright lights of TV shining in his eyes. Stephanie tells the audience how the Easter Seals autism Web site helped her realize Kyle’s need for services. What a great feeling it is to know we were there when he needed us.

Later that night, Kyle had over 30 people walk on his team at our Walk with Me event in Milwaukee. One of those walkers was Amanda Dobberstein, Kyle’s original P.L.A.Y. consultant. He and his Mom told nearly 400 walkers about the progress Kyle has made and how grateful they are to Easter Seals for providing the scholarship.

This was a day when all the pieces came together — years of planning, fundraising that resulted in a caring staff providing services that change a life. Kyle may need only limited services when he moves on to first grade next Fall because of the work of Easter Seals early on.

On a personal note, my daughter Molly tagged along to the interview. There she was, off to the side, clad in her Walk with Me tie-died t-shirt, hearing about what an impact the agency Daddy works for makes in someone’s life. She thought it was “totally cool” to meet Kyle and see a TV station. Hearing her say that Kyle is a lot like her little brother Tommy was another life lesson I was glad she gained that morning. And you know what? I thought it was “totally cool” to be at that TV station with Kyle and his mom, too.