Easter Seals affiliates in other states are hoping to help pass this type of legislation so that people with autism can benefit from our expertise in diagnosis and screening, and when necessary, from our autism services.

The Act creates a special governmental joint venture between the department of health, the department of elementary and secondary education, and the department of human services to promote public awareness of and the use of early intervention services in regard to autism spectrum disorder.

The legislature specifically wanted to reinforce screening for children who are uninsured and/or underinsured through the Rhode Island department of health with assistance from experts, service providers and parents and to provide appropriate testing and screening models and to create a case management system to properly catalogue such diagnosis.

The department of education will develop a continuing education certificate in autism spectrum disorders at Rhode Island College.

A number of states are looking at similar legislation in their upcoming sessions, beginning in January, to promote awareness, screening and diagnosis, and professional development.

Safeway executives unveiled the 2009 Safeway Foundation’s Empowerment Grant award winners during Easter Seals’ annual convention in Washington, D.C., granting $1 million to expand programs across the country that measurably improve access to services and outcomes for children and adults living with autism and other disabilities.

Now in its second year, the 2009 Safeway Foundation’s Empowerment Grants are awarded to Easter Seals affiliates across the country whose innovative programming truly makes a difference in the lives of people with disabilities, whether through autism services, employment support, inclusive child care, early intervention, medical rehabilitation or respite.

You might remember the post I wrote about Safeway last may, where I mentioned their long-standing commitment to hiring people with disabilities:

Safeway employs more than 10,000 adults with disabilities. You read that right. They hire more than 10,000 adults with disabilities. There are over 1,700 Safeway stores across the United States and Canada, operating under various brand names including Safeway (East Coast, Seattle, Portland, Northern California, Phoenix and Denver), Vons and Pavilions (Southern California and Nevada), Dominick’s (Chicago), Randalls and Tom Thumb (Texas), Genuardi’s (Philadelphia) and Carrs stores (Alaska). Look around the next time you are shopping at one of these stores — it’s likely you’ll find an employee there with a disability. What a welcome sight!

I can tell you firsthand — when you have a disability, it is extremely difficult to convince employers to hire you. Safeway’s commitment has given many adults with autism and other disabilities a career and a means to live independently. Now these new 2009 Safeway Foundation Empowerment Grant awards will support Easter Seals local programs, which will help us reach more families living with disabilities.

I’ve said it before, and I’ll say it again: Thank you Safeway!

We’ll be visiting our legislators and asking them to support health care legislation that includes:

• Coverage for pre-existing conditions, guaranteed coverage renewal, and no annual or lifetime caps.
• Benefits like rehabilitative and habilitative services, medical equipment and devices, and mental health services.
• Affordability provisions, so that all people, including those with disabilities, can receive the health care they need to live, learn, work, and play in their communities.

Send a message to Congress voicing your support, and help reinforce Easter Seals’ message as we head to Capitol Hill to meet with legislators.

And make sure you get our updates during our Capitol Hill Day! Join us on Facebook and Twitter. And if you’re already on Twitter, help us spread the word by tweeting about Easter Seals Capitol Hill Day by using the #CapHill09 hashtag.

Together, I know we can make our message to Congress heard loud and clear!

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.

A publication in Pediatrics indicates that 1 in 91 children between the ages of 3 and 17 has an autism spectrum disorder. The story in Pediatrics came out of a report from the National Survey of Children’s Health, and it indicates a clear increase from the 2007 research that found as many as 1 in 150 children had an autism spectrum disorder.

The news of this increase has many people asking why. As for me, I am asking what. What will we do to meet the increased need for services? What will we do to meet the increased need for supports?

Surveillance studies are important. They inform our society about what is happening to our population, and they should inform our society about the needs of our society members. Every day Easter Seals hears from parents who are not able to access services and supports for their children. The two barriers I hear about most often from families are financial barriers and the lack of trained professionals in their communities.

Individuals with autism can and do lead meaningful lives with effective services and supports. Increased prevalence equals increased need. The research has been done. We know that there are more children with autism. This must lead to the logical conclusion that there are more children in need of services and supports.

Remove the barriers to effective services and supports. Our professionals (teachers, childcare workers and therapists) need access to training. Our families need financial support to ensure their children receive quality treatment. Our society funded the prevalence study to find out about how many children have autism. Let us now fund services and supports to meet the needs of those we found.

Durbin talked about the bill during a speech he gave at Illinois Wesleyan University on August 12. The speech stressed the need for more job opportunities for people with autism and other disabilities. Quoting from a recent DePaul University study on the costs and benefits of employing people with disabilities, Durbin reminded his audience that people with autism and other disabilities make very loyal employees.

This is what the study found: on their annual performance reviews, employees with disabilities rated slightly higher than their co-workers without disabilities. Employees with disabilities took fewer scheduled and unscheduled days off work — just the opposite of what many might assume.

In addition, the average cost of accommodating the workers with disabilities — modifying the workplace to meet their needs — was $313. As investments in good, dependable workers go, that’s a bargain. And you know what the most frequent request for “reasonable accommodation” was? Flex time, which costs nothing.

Sen. Durbin ended his speech with a long list of scientists, inventors, and writers with autism whose contributions have changed the world.

Clearly, not everyone on the autism spectrum has the potential to become a Nobel laureate or invent a world-changing device. But millions of Americans with autism and other disabilities do have talents and contributions that our nation needs. And in this economy, with government at all levels facing budget cuts, doesn’t it make sense to try to bring more people into the workforce rather than leaving them to rely so heavily on public programs? That is all people with disabilities are asking for: the chance to be full members of our society, to make the most of their God-given talents, and to work to the best of their abilities.

Amen.

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.

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.

In their fundraising campaign during April (Autism Awareness Month), Safeway invited customers to support Easter Seals services for people with autism and other disabilities at checkout. In just one month, Safeway raised $8,824,141! Safeway employees also raised an additional $1.4 million through local market events, golf tournaments, galas and fundraisers—bringing the company’s 2009 grand total for Easter Seals services to $10.2 million.

And here’s the cool thing –Safeway puts its money where its mouth is. Safeway employs more than 10,000 adults with disabilities. You read that right. They hire more than 10,000 adults with disabilities. There are over 1,700 Safeway stores across the United States and Canada, operating under various brand names including Safeway (East Coast, Seattle, Portland, Northern California, Phoenix and Denver), Vons and Pavilions (Southern California and Nevada), Dominick’s (Chicago), Randalls and Tom Thumb (Texas), Genuardi’s (Philadelphia) and Carrs stores (Alaska). Look around the next time you are shopping at one of these stores – it’s likely you’ll find an employee there with a disability. What a welcome sight!

I can tell you firsthand — when you have a disability, it is extremely difficult to convince employers to hire you. Safeway’s commitment gives many adults with autism and other disabilities a career and a means to live independently. Larree Renda, Safeway Executive Vice President and Chair of the Safeway Foundation, says it best: “Most important, is the message that people with autism and other disabilities are valuable members of the workforce—even in these tough economic times. Too many businesses don’t take the risk in hiring people with disabilities. At Safeway we’ve embraced it, and have had great success.”

THANK YOU Safeway!

Easter Seals President and CEO Jim Williams visited the White House recently to personally thank President Obama for all that he’s done for people living with autism and other disabilities. While he was there, he also urged the president to keep the needs of individuals living with autism and other disabilities a top priority in health care reform.

Millions of people live with a disability and that number increases every single day. Easter Seals works hard to reach as many people as we can, but our efforts alone are not enough to help every person in need of disability services. This is why Jim Williams urged President Obama to keep the needs of individuals living with autism and other disabilities a top priority in health care reform.

You can contact the White House, too — click here to thank President Obama for his work
and to ask him to continue to prioritize the needs of the millions of people who live with autism and other disabilities.