Don’t miss the Advancing Futures for Adults with Autism town hall

by Patricia Wright

You are invited! 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. On November 13, Americans in 15 cities will come together to create a policy agenda for addressing the needs of adults with autism. These needs include housing, jobs, recreation, friends and supportive communities.

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!

Transportation: a link to a quality life

by Patricia Wright

On Wednesday I was fortunate enough to attend a roundtable on Transportation for Students with Disabilities. The roundtable was sponsored by Easter Seals Project Action, which promotes cooperation between the transportation industry and the disability community. The goal of Wednesday’s event was to identify the transportation needs of youth with disabilities and develop a set of actions to address the barriers they face when it comes to transportation access. A fabulous, diverse group of people were in attendance. Youth with disabilities, parents, service providers, educators, vocational rehabilitation counselors, and others all spent the day engaged around the issue of transportation.

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.

Maurice celebrates autism services in Wisconsin

by Bob Glowacki

I am writing to give a huge thanks and “shout out” to our good friend Maurice Snell. Before I left for Capitol Hill Day and the Easter Seals National Convention last week, Maurice came to Milwaukee to share his story with nearly 100 Easter Seals friends and donors.

This was a special night for Easter Seals Southeast Wisconsin, as we were publicly announcing our merger with Waukesha Training Center. I was so grateful Maurice spoke after I did. Everyone knows there’s no topping Maurice’s inspiring personal story.

Maurice has autism, and when he was a child the system very often considered institutionalizing children with his symptoms. In his speech, Maurice shared his life and a tale of his personal strength, devoted family and the help of Easter Seals Metropolitan Chicago. Today Maurice is a college graduate, and I actually heard a gasp of surprise from the audience as Maurice shared the story of earning that degree. When Maurice’s talk drew to a close, the audience gave him a standing ovation.

Maurice’s personal story spoke to one aspect of our merger, bringing together an array of services:

• Early intervention
• Work services
• Case management
• Adult day and recreation

Families seeking help, hope and answers will find resources and support at Easter Seals. Maurice’s story also speaks to the need for a continuum of services across the lifespan, to give people with all types of disabilities more opportunities for inclusion, access to services, careers and most importantly, choices in their futures!

Thanks, Maurice, for coming to Milwaukee! We want to bring you back to share your story with our work services participants so they can start dreaming of their futures too.

A special interest in weaving

by Beth Finke

This month Patricia Wright, Easter Seals National Director of Autism Services, wrote two posts about careers for adults who have autism. The first one was about an IT firm that goes out of its way to hire individuals with autism who have a special interest in internet technology. The second post was about a business professor with autism who says his special interest in consumer behavior contributes to his professional success. In both posts, Dr. Wright warned against assuming people with autism all have the same special interest.

After these posts were published, I received a note about an interview with artist Gary Rosenthal. In the interview, Rosenthal discusses a new line of woven Judaica he is producing with the help of two workers who have autism. The artist says:

I like to say that all of my staff/associates do what they do better than I would do. Nowhere is this clearer than with my autistic associates. Everyone is different, but John and Tim love to work on repetitive tasks where precision is critical. Weaving is a favorite task and the more the better.

Rosenthal says that the success of the mezuzahs have motivated him to create more woven items and hire more staffers who have autism. I think that’s great! Just hope he’s read Patricia Wright’s posts here and knows that not all people with autism are precise and like repetition the way his workers John and Tim Do.

A terrific Capitol Hill Day!

by Bob Glowacki

What a terrific Capitol Hill Day we had in Washington D.C.!

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!

Help us take our health care message to Capitol Hill tomorrow

by Katy Beh Neas

Hundreds of Easter Seals volunteers and clients are heading to Capitol Hill tomorrow to tell Congress that health care can’t ignore families living with disabilities. Our message is clear: families with disabilities should have affordable health care that provides the services they need, when they need them.

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!

Dr. Lars Perner’s personal perspective on “special interests”

by Patricia Wright

In my blog post yestrday, I talked about a Danish entrepreneur who used a great business strategy. He found an area of special interest, and employs people with autism who have that special interest.

I warned against assuming people with autism all have the same special interest. A good example: Lars Perner.

Dr. Perner is an assistant professor of clinical marketing at University of Southern California’s Marshall School of Business. He also happens to be a person with autism. Perner keeps a personal blog called Delightful Reflections, and often shares that his special interest in consumer behavior has contributed to his professional success.

Dr. Perner has a free audio lecture too. You might want to check it out — we can all learn a lot more about “special interests” by getting a personal perspective from an expert: an individual with autism.

Putting “special interests” to work

by Patricia Wright

A story in Wired Magazine explains how the news of his son’s autism diagnosis inspired Danish entrepreneur Thorkil Sonne to start Specialisterne (Danish for “Specialists”), an I.T. firm that hires mostly people with autism spectrum disorders (ASD).

One characteristic we often hear about people with autism is an intense interest in a particular subject. Colloquially in the field of autism this is called a “special interest,” and Specialisterne hires individuals with autism who have a special interest in internet technology.

In Sonne’s native Denmark, as elsewhere, autistics are typically considered unemployable. But Sonne worked in I.T., a field more suited to people with autism and related conditions like Asperger’s syndrome.

“As a general view, they have excellent memory and strong attention to detail. They are persistent and good at following structures and routines,” Sonne says. In other words, they’re born software engineers.

Too often I hear people say things like, “People with autism are really good at (name a topic).” CAREFUL! I think people with autism are really good at something that interests them, at a particular time, and in a particular environment. Kind of like the rest of us!

Take me, for example. I’m good at cooking, in the evening, in my kitchen. In the morning, it’s a bowl of cereal. In an unfamiliar kitchen, I’m a little shaky. Each person with autism is an individual, and their interests emerge in particular environments in a particular time frame.

It’s fantastic when anyone’s interest intersects with a vocation, and if you are a person with autism who loves Information Technology, Specialisterne may want to hire you. Mr. Sonne used a great business strategy: find an area of special interest, and employ people with autism who have that special interest. Given the vast number of adults with autism who have difficulty securing employment, it would be great of other business leaders took on this model with their own area of special interest.

“The Story” on Disability Employment Awareness Month

by Beth Finke

It’s Disability Employment Awareness Month, and An NPR show called The Story contacted me last week to record an interview. If you’ve never heard The Story, here’s a description of the show from their Web site:

At a time when “celebrity rules” and the only “ordinary” people we see are faces in the crowd, The Story reminds listeners that their stories and their lives matter. We believe that by creating a space for first person stories we are choosing not to accept a pollster’s version of our thoughts and attitudes.

The Story originates on North Carolina Public Radio, so Dick Gordon, the show’s host, was in Chapel Hill during Friday’s interview. Me? I sat alone with my Seeing Eye dog Hanni in a recording booth in Evanston, Illinois. The sound man, seated in another room behind a plate of glass, says if you listen carefully you’ll hear Hanni’s harness jiggle as she settles in at the beginning of the taping. She slept for the rest of the hour. She’d heard this all before.

The interview questions centered on my working life. I lost my sight in 1985. The Americans with Disabilities Act wouldn’t be signed into law until five years later. When I lost my sight, I lost my job. Worse than that, I lost my self-confidence. It took a while for me to get the gumption to apply for work again, but once I did I met up with some pretty wonderful, flexible employers. A series of part-time jobs helped rebuild my confidence back. Today I’m a published author, a teacher, and … a blog moderator!

If you read my blog post about a speech Sen. Richard Durbin (D-IL), gave on hiring people with autism and other disabilities, you know he mentioned a recent DePaul University study on the costs and benefits of employing people with disabilities. Durbin used the study to remind 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.

I wasn’t savvy enough to refer to research studies when they taped my interview for The Story, but I hope the spirit of that study shines through when the show airs. The Story is distributed nationally by American Public Media. It can be heard in North Carolina on WUNC-FM and WRQM-FM (90.9) in Rocky Mount. The show can also be heard on other stations across the U.S. including WBEZ in Chicago and KPCC in Los Angeles. I’m not sure yet when my particular segment will air, so stay tuned — I’ll let you know as soon as I find out.

In the meantime, take a look at a post called Disability Employment Awareness in the News on the Justice for All Activist Blog. The post has a nice round-up of articles about disability employment awareness that have already been published this month.

NJ law keeps autism on legislators’ minds

by Kathy Patrick

On August 13, 2009, New Jersey became the 15th state to enact a law requiring many insurance companies to cover the screening and therapeutic treatment for children up to age 21 who are diagnosed with autism and other developmental disabilities.

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.