Easter Seals “tackles” autism

by Maurice Snell

Hello to all my friends in the Easter Seals network!

It’s that time of year once again for the annual Easter Seals Walk With Me event. I sense another great year for the families and children diagnosed with autism, with everyone pitching in to do their part to support those in need.

Recently, I went with Alex Steele (Associate Director of Marketing and Corporate Relations), Kristen Barnfield (Director of Public Relations), and Jeanne Sowa (Senior Vice President of Marketing and Corporate Relations) to Houston, Texas to take part in a great campaign called “Houston Tackles Autism.” This campaign highlights the future for many autistic individuals and it would require $1 million for it to be completed.

For those of you who may or may not know, Easter Seals is partnered with the Avondale House to provide services to many children with autism. When I first stepped into the Avondale House, it reminded me of the good times I’ve experienced in my youth at Easter Seals.

The icing on the cake was the Houston Texans players – Matt Schaub and Ahman Green — being a part of this campaign. Their stories relating their experiences of autism were inspiring and send a message that we have to work together.

I was fortunate to express my story to both of these talented football players. It was a great feeling to be in the presence of two individuals who aim to make a difference.

I ask that all people in this country give their 100% to fight autism. Don’t give up, just work together like Matt and Ahman to reach our ultimate goal – $1 million.

Of course, the money doesn’t just satisfy individuals with autism; it’s our devotion to Easter Seals and Avondale House that will send million-dollar smiles to everyone in this country.

What to do after school?

by Patricia Wright

My students with autism always did better with their day being structured, with a schedule of activities and a clear understanding of what was going to occur. As a teacher, it was my job to provide this structure and predictability.

But the school day is only six to eight hours long — how does that predictability and structure continue the rest of the waking hours for a student with autism?

AutismVox called out this need for after-school supports for students with autism, and how a new program in New Jersey — Anything is Possible — is meeting that need for five students. With as many as one in 150 children in the United States experiencing autism, there is significant need to develop programs like Anything is Possible.

Easter Seals also provides after-school programs for children with autism. Easter Seals Metropolitan Chicago, Easter Seals Hawaii, and Easter Seals Bay Area are just three of the sites where Easter Seals delivers structured after-school opportunities for youth.

Don’t hesitate to contact us if you are looking for an after-school program in your area.

Anything is Possible and the Easter Seals programs are just a drop in the bucket for what is needed. Quality after-school programming is important for all students, and structured quality after-school programming is also needed for the one in 150 children in this country who experience autism.

Book review: Mary McHugh’s "Special Siblings"

by Beth Finke

In Special Siblings: Growing Up With Someone with a Disability, Mary McHugh doesn’t shy away from the troublesome aspects of sibling relationships — she addresses them. It is emotional and enlightening; I recommend this book to teen and adult siblings, as well as all professionals who support families of children with autism and other disabilities.

McHugh is a writer in her 70’s. She’s written dozens of books and hundreds of articles, but this book is her only one specifically written about disabilities.

McHugh’s younger brother, Jack, was born with cerebral palsy and mental retardation. She and Jack were adults when their mother died, and McHugh had to take on the responsibility of caring for Jack.

Ambivalent feelings toward Jack — anger, resentment, guilt, and disappointment — had all been repressed before then. By getting to know Jack better, McHugh soon realized the important role her brother played in shaping her character, her life, and her other relationships.

Far from being just a “poor me, wonderful me, look at my special life” memoir, Special Siblings includes relevant research and interviews with more than 100 other siblings and experts. McHugh addresses the things brothers and sisters of a sibling with autism or other disabilities need from their parents; how having a sibling with autism or another disability may affect the child’s or adult’s social and professional relationships.

In addition, McHugh’s book shows how career options for the sibling without a disability are affected, and how families can plan together for the future of the child with the disability.

And what I like best about this book — it’s honest.

Learning in Hong Kong

by Patricia Wright

As mentioned in my previous post, I attended the Asian Autism Conference in Hong Kong this past weekend along with an estimated 500 parents, care-providers, specialists, and health-care professionals. The aim of the conference is to share insight into research and treatment methods from experts spanning the globe.

The demand for information and services is evident throughout the world. U.S. Consul General James B. Cunningham delivered the opening remarks. Cunningham provided a wonderful introduction to the conference; conveying the sense of urgency and need around autism — as well as his personal learning in the area of autism through reading works of fiction, including The Curious Incident of the Dog in the Nighttime.

Cunningham’s interest in autism service delivery is clearly established as he provided the opening remarks last year as well.

On day two, Lee Grossman, president of the Autism Society of America, welcomed the group and shared a vision of his organization’s commitment to the global issues affecting the autism community.

The Autism Parents Network of Hong Kong sponsored the event and organized the extensive array of learning opportunities. The message from parents, who reside throughout Asia (Hong Kong, mainland China, Philippines, Japan), was the same — we need information and support.

Liberty, justice, and health coverage for all

by Beth Finke

A comment to our blog this week expressed a mother’s frustration in finding health insurance for her sons with autism. The lack of health care coverage in America puts many at risk, but none more so than the 100 million Americans with autism and other disabilities.

For the first time ever, America’s leading patient groups — charitable organizations that represent people with a chronic disease or disability — are joining forces to support the improvement of health coverage.

The National Health Council (NHC) is leading this effort to educate presidential candidates and the media about the health coverage crisis. Easter Seals is joining the NHC in this effort, and so are nearly 50 other patient groups.

“We’re facing a grave crisis that demands immediate action,” said Easter Seals Chief Executive Officer Jim Williams, who also serves as Chair of the National Health Council. “Many are at risk, but none more so than the 100 million Americans we represent.”

Williams hopes this effort educates candidates, compelling them to act on this vital issue.

You can help.

Send a letter to the editor of your local newspaper explaining how this problem affects you and your family. And while you’re at it, send a copy to the presidential candidates, too.

Let’s get them talking — and doing something — about this.

Teenager is second mom to brother with autism

by Beth Finke

Recently, National Public Radio’s All Things Considered featured a story written and recorded by a 17-year-old in New York who helps take care of her younger autistic brother.

Sara Martinez speaks English. Her parents, who are from Mexico, do not. As her family’s bridge to the English-speaking world, Sara takes on a lot of responsibility for her little brother.

She knows taking care of Diego has helped her grow up faster than her peers, and sometimes she feels she missed out on being just a regular teenager. As Sara says in her radio documentary, “When my mom was telling me her worries about Diego, inside I was like, ‘why are you telling me this? I’m just a kid — why should I have to worry too?’ But instead I just let my mom talk.”

Radio Rookies is a New York Public Radio initiative that provides teenagers with the tools and training to create radio stories about themselves, their communities and their world.

The documentaries usually just air locally on WNYC, but National Public Radio found Sara’s piece so compelling that they chose to air it nationally.

Labor Day, autism and unemployment

by Beth Finke

A Wall Street Journal article (subscription only) this summer, titled “Erasing ‘Un’ From ‘Unemployable’ “, opens with a story about Harrison Mullinax, an 18-year-old in Anderson, SC who has autism.

“Unlike most who are autistic,” the article reads, “he now has a real job.”

The article goes on to talk about efforts to enable those with disabilities to hold regular jobs.

I am one of those people.

I am blind. I use a talking computer to do this “regular” job. As far as I know, I am the only blind woman in America being paid to moderate a blog.

The simple fact that I am employed at all puts me in a minority. A story in the New Standard titled “Unemployment, Poverty Higher for People with Disabilities” says only 38 percent of nearly 21.5 million people with disabilities between the ages of 21 and 64, or what is determined as “working-age,” are employed in the United States. That figure compares to just over 78 percent of people without disabilities.

Monday is Labor Day, and I’m celebrating Easter Seals’ efforts to make “real jobs” a reality for people with autism and other disabilities. Easter Seals provides job development and employment services in many geographic regions.

And Easter Seals is not alone. Other organizations are working to erase the “un” from “unemployable” when it comes to people with autism and other disabilities. APSE (formerly the Association for Persons in Supported Employment) is another resource. APSE and the Autism Society of America recently partnered to present a conference focusing on the employment needs of people with autism.

Also worth noting: the U.S. Business Leadership Network’s 10th Annual Conference, “Building the New Workforce — Inclusion and Innovation” is set for September 23 to 26 in Orlando. The national event is intended for business, community leaders and Business Leadership Network chapters that have an interest in hiring, retention and marketing to people with disabilities.

Don’t get me wrong — I’ll enjoy my day off! But like many people with disabilities, I look forward to getting back to work, too.

Happy Labor Day!

Are people with autism “disabled enough” for the ADA?

by Katy Beh Neas

An article on the Americans with Disabilities Act (ADA) at govtech.com points out the confusion about who is “disabled enough” to qualify for ADA rights and why the ADA needs restoration.

The article reports millions of citizens have been left vulnerable to a narrow interpretation of the law, and that people with other disorders and disabilities such as autism, epilepsy, muscular dystrophy and those who use hearing aids may not be “disabled enough” to be protected under the ADA.

“The Supreme Court’s interpretation has created a vicious circle for Americans with disabilities,” said Congressman Jim Sensenbrenner (R – WI), cosponsor of the ADA Restoration Act of 2007. “It has created a broad range of people who benefit from ‘mitigating measures’ such as improvements in medicine, who still experience discrimination from employers, yet have been labeled ‘not disabled enough’ to gain the protections of the ADA. This is unacceptable.”

Easter Seals is encouraging lawmakers to pass the ADA Restoration Act, which will help restore the basic rights of people with disabilities.

At last count, 181 members of the House of Representatives had cosponsored the ADA Restoration Act, just shy of the 218 needed for a majority vote.

Although members of Congress are on recess, they will be back on Capitol Hill next week. But you can contact them now!

Locate your local representative and check to see if that representative is a co-sponsor. Then, find out who your senators are and see if your senators are cosponsors too.

Visit their websites for contact information to local offices, and then call, fax, email, or SHOW UP at their door.

If your representatives are among the cosponsors, thank them. If they are not cosponsors yet, urge them to support the ADA Restoration Act of 2007.

A global issue, without boundaries

by Patricia Wright

Autism does not have geographic boundaries –- the growing autism prevalence rate is of world-wide concern.

I am currently in Los Angeles waiting for my flight to Hong Kong where the Asian Autism Conference is being held this weekend. Hundreds of parents, care-providers and professionals will converge to learn how to meet the growing need for services and supports.

Although Easter Seals provides service primarily in the United States, we do have an affiliation with Ability First in Australia and a strong belief that all individuals with disabilities deserve the right to quality services and supports — regardless of political boundaries.

I am also happy to join and support our colleague Lee Grossman, president of the Autism Society of America, who will be providing a presentation at the Conference.

Autism is a global issue. I look forward to spending my weekend hearing about the unique tools and strategies being used in Asia. Through advocacy, education and global collaboration, the needs of individuals with autism can be addressed.

Book review: Joanne Cafiero’s “Meaningful Exchanges for People with Autism”

by Patricia Wright

Meaningful Exchanges for People with Autism: An Introduction to Augmentative and Alternative Communication, by Joanne Cafiero, Ph.D., is an excellent resource for AAC (Augmentative and Alternative Communication) intervention for people with autism. The content is provided in a user-friendly format which includes qualitative stories, quantitative data and pictorial representations. This book would be particularly helpful to those new to the field of AAC or new to the delivery of AAC service and support to individuals with autism.

Approximately 50% of individuals with autism do not develop effective spoken language according to research published in the 2001 book, Educating Children with Autism.

AAC provides a means to communicate for those who do not have spoken language. AAC is any tool, device, picture, word, symbol or gesture that compensates for expressive and receptive communication deficits. Individuals with autism who are not able to effectively utilize spoken language can use AAC to interact with others.

Cafiero’s style of writing is immediately accessible to both the skilled AAC professional and the novice reader. She opens her book with an explanation of why the AAC tools and strategies discussed are important for individuals with autism. This content is provided in both descriptive stories and with scientific data. The first two chapters provide an introduction to the strengths and challenges that individuals with autism experience in regards to communication.

Chapter three provides information on the AAC tools, devices and strategies that can be used to promote effective communication for individuals with autism. Cafiero covers the range from the low-tech picture communication symbol through high-tech electronic systems and everything inbetween. In addition to the descriptions of available tools and devices, there are personal stories of how these tools were used by individuals with autism to promote effective communication. Most importantly, Cafiero provides direct guidance and how-to instructions. 

AAC assessment is addressed in chapter four. Three distinct models of assessment are described and examples are given. The necessity of a quality assessment is highlighted. Cafiero states that the nature of learners with autism and the continued progress of technology require that the AAC assessment process be dynamic. Assessment decisions may need to be modified as the learner with autism gains skills and/or as technology development advances.

Chapter five is an overview of AAC and the law. Cafiero provides a comprehensive list of the laws that support the provision of AAC tools and supports. The majority of the chapter addresses the needs of children; however, there is some content for adults as well.

Cafiero’s book also includes a helpful section titled “frequently asked questions.” This question and answer format is reader-friendly and allows for quick access to the common areas of concern a reader might ponder.

Meaningful Exchanges for People with Autism should be considered a go-to resource for readers interested in providing effective language and communication interventions for individuals with autism.