Easter Seals is proud to be part of Advancing Futures for Adults with Autism (AFAA), a national consortium seeking to create meaningful futures for adults with autism. At the town hall meeting this Friday, over 1,000 people in 15 cities will join the discussion to make recommendations on these important issues. Caregivers, advocates, elected officials, family members, and adults with autism will participate, and we hope you will, too!

The event will be orchestrated from a central hub in Chicago, and a webcast will allow us to hear ideas from participants at satellite sites all over the country. The unprecedented scale and diversity of the AFAA Town Meeting will attract national attention and build momentum around addressing the needs of adults with autism. Easter Seals is hosting the satellite sites in Long Beach and in Fort Worth.

There are a few slots left in these sites — register now!

Over 1,000 people (caregivers, advocates, elected officials, family members, and adults with autism) will join the discussion to make recommendations on these important issues. The event will be orchestrated from a central hub in Chicago, and a webcast will allow us to hear ideas from participants at satellite sites all over the country.

The unprecedented scale and diversity of the AFAA Town Meeting will attract national attention and build momentum around addressing the needs of adults with autism.

Easter Seals is hosting the satellite sites in Long Beach and in Fort Worth.

Sign up now to be part of Advancing the Future of Adults with Autism. Be part of the solution. Ensure adults with autism have the quality of life that all citizens deserve!

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.

We started the day off with a tour of the White House. About 200 Easter Seals staff and volunteers got to take advantage of this rare opportunity!

Then we met with members of Congress for our home state of Wisconsin — Senators Kohl and Feingold, and Representatives Kagen, Sensenbrenner and Moore. We had a half-hour with Sen. Kohl discussing health care and long term care. We were pleased to find all the members we met with agreed with ending pre-existing conditions as a major policy goal for people living with disabilities. Each office told us they agree on 80% of the issues involved. Rep. Kagen is a doctor and is following this issue closely. We even got a fist bump from him for the work done at Easter Seals!

As an organization, we were pleased to hear the praise from all our visits about the work done by Easter Seals. This year, Easter Seals Southeast Wisconsin is investing $100,000 to start to a new Applied Behavioral Analysis (ABA) program for children with disabilities. Annually, we raise over $100,000 to cover shortfalls in our Birth-to-4 program. Each person we met with knew Easter Seals is a vital piece of the network in providing community supports for children and adults with disabilities.

But one day of staff and volunteers in D.C. is not going to get the job done. One office told us the people back home need to weigh in.

It’s not too late to keep calling, mailing and emailing your thoughts. It helps in guiding policy and letting members know what people back home are thinking. There are concerns within any of the current bills that can affect those living with disabilities, their care and their supports. Many people living with disabilities have long term health conditions and will be impacted directly by the changes in our health care system.

So … stay tuned and stay involved!

The law is scheduled to take effect in February, 2010. Under the legislation, insurance companies will be required to provide up to $36,000 a year for medically-necessary behavioral early intervention for all patients with autism, and with other developmental disabilities, who are under 21 years of age. New Jersey health insurers would provide diagnostic coverage for screening for autism and other developmental disabilities.

The mandate also includes therapeutic services, including any medically-necessary occupational, physical and speech therapy. The law provides up to $36,000 a year, per child, for behavioral, speech, and occupational therapy. Of 15 states with similar requirements, New Jersey is the first to include coverage for other developmental disabilities, too.

This new legislation has autism on people’s minds. I recently attended a political rally where I felt like I was at an autism advocacy rally! A lot of people were talking about autism. I heard more talk about autism at that rally than I have ever heard at a non-autism event. The speakers, the folks at my table (whom I had just met), municipal officials, school board officials, state and county officials, the candidates … everyone was talking about the importance of New Jersey making the diagnosis and treatment of autism spectrum disorders a top priority.

That rally was one of those rare times when I witnessed my professional and personal values mesh with my vision — governing leaders were ensuring that all people are included, and that supports are provided to achieve that goal.

Google had a booth at the Autism Society of America conference last month so they could show off their free software program SketchUp. SketchUp was originally developed for users to create, modify and share 3D models. Turns out SketchUp helps folks with autism develop some skills, too. Check out this youtube video to see some of the autism SketchUp success stories.

On Tuesday I visited the Google Chicago office to brainstorm possibilities of how to reach out to people with autism and let more of them know about SketchUp. Google has heard the success stories from people with autism and is interested in spreading the word so others may benefit.

The Google office was exactly what I expected: incredibly hip surroundings, staff in flip-flops, even lava lamps in the reception area! What came shining through all this grooviness while speaking with the staff at Google during my visit is their desire to contribute back to their community. What a bonus to have such a well-known company take an interest in the world of autism.

So I am on the bandwagon, reaching out about SketchUp. Download the SketchUp program for free and let us know what you think.

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.

Along with other Easter Seals affiliate and national staff members who handle state government relations, I networked with state legislators, learned about the issues facing my state legislators, and educated legislators and their staff on issues facing Easter Seals.

I also wear the “autism spokesperson” hat for Easter Seals New Jersey, so I participated in a session for legislators called Autism Spectrum Disorders: State and Federal Policy Trends. The session was sponsored jointly by Easter Seals and the Association of University Centers on Disabilities (AUCD).

Our session began with George Jesien, executive director of AUCD, and Jennifer Bogin, project manager for AUCD, who discussed research, education and services for individuals with ASD. They were followed by Denise Rozell, assistant vice president for state government relations for Easter Seals. Denise detailed what’s new with state legislators and encouraged them to link to our 2009 State Autism Profiles. The profiles provide factual, objective descriptions of what the 50 states, D.C. and Puerto Rico are doing for people with autism.

After Denise, Pennsylvania Representative Dennis O’Brien and Maryland Representative Kirill Reznik captivated the audience with stories of how they advocate for people with autism. And then it was our turn: Charlie Briggs, assistant vice president of adult and community services for Easter Seals Goodwill Northern Rocky Mountain and I were prepared to discuss our state’s accomplishments and share some personal stories. The reason I say “were prepared” is that the session ran long. By the time Charlie and I were supposed to speak, attending legislators and their staff needed to get on their way to the next event. Bill Gates was presenting immediately following our session! And while fans of Charlie and me would agree that we are two of the most engaging and amazing speakers, we recognized that we are not the great Gates. We let our fans move on.

What I had wanted to share with the audience was my viewpoint as a parent of a child with ASD — to help them understand why all of this matters. Two of the speakers had discussed “the cliff,” the feeling that many families experience when their child with autism turns 21 and the scope of services changes dramatically (for the worse).

My son is only 12 so I haven’t seen that particular cliff yet. But trust me, I’ve had many hair-raising experiences already with other cliffs. I’ve been on the edge, frustrated by the lack of available services my son desperately needed. That feeling is something you never forget. You want to give up and jump off. And, sometimes, you want to push someone else off with you while you’re at it!

I’m a resourceful person with a graduate degree in special education. I have a lifetime worth of contacts and experiences with supporting people with disabilities. I’m a blessed person surrounded by friends, family and colleagues who would all do whatever was necessary to help my son and me. I have a roof, a job and health insurance. But I still couldn’t find the services that would meet my son’s needs. If I can stand on the edge of that cliff and consider how much easier it would be to give up, one can only imagine what it’s like to be in a more challenging situation.

Whether you are a legislator, a friend, a supporter, a fan, a family member, or someone with ASD, you can’t ever give up. You can’t let the cliff get the best of you. Resisting the urge to jump can make you stronger. Let the cliff make the best of you, use your strength to give it all you have — ensure that people with ASD all over this country get the services they need. If we work together, maybe fewer people will end up living on the edge.

In a TASH Connections newsletter, Ralph Edwards, Chair of the TASH Diversity Committee, said it this way:

It is our hope that [people] will understand how having a disability and being faced with racism and ethnic discrimination compounds the challenge of accessing meaningful services…Employment, health status, life expectancy, access to housing and support services, educational attainment, involvement in
the criminal justice system, etc. are more negative for individuals of color with disabilities. While this is not new information in the disability movement, it hasn’t generated research, policies, funding, and programs commensurate with the scope of the problem.

Scholarships to national disability conferences are part of this initiative — individuals of color with disabilities and/or family members are eligible to apply for scholarships. The upcoming Autism Society of America (ASA) conference is one of the disability conferences being supported by this effort. Those who are eligible and complete an application will receive a scholarship to attend the conference free, as well as a year long membership with ASA and TASH. Applications are due this Wednesday, July 15 on a first-come, first-serve basis. To learn more about the scholarship program contact TASH at 202-540-9016 or email them at pdjukes@tash.org or hkimmet@tash.org.

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.