Brothers and sisters of autism

by Beth Finke

A story in this month’s issue of Vanity Fair reports how famous playwright Arthur Miller had his son Daniel, born with Down syndrome, placed in a “home for infants” in New York City.

Miller was concerned about what his daughter Rebecca’s life would be like if she grew up with a brother who had a disability. In the article, a friend recalls Daniel’s mother saying Miller felt it would be “very hard for Rebecca, and for the household to raise Daniel at home.”

Another friend remembers “it was a decision that had Rebecca at the center.”

There weren’t many support services for siblings of children with disabilities back in 1966, when Daniel Miller was born.

Thank goodness things have changed.

The brothers and sisters of children who have autism or other disabilities are a special lot. Easter Seals’ services offer help and hope to children and adults living with autism and other disabilities, and to the families who love them.

This includes siblings.

Through my work at Easter Seals, I’ve also learned about another resource for siblings: the Sibling Support Project offers support to the brothers and sisters of people with special health, mental health, and developmental needs. The Sibling Support Project sponsors the Internet’s first and largest listserv for people who have brothers or sisters with autism, or other disabilities.

Today, with more support services for siblings, the brothers and sisters of children with disabilities can take advantage of an opportunity Rebecca Miller missed out on.

Business gets hip to expansion of SCHIP

by Beth Finke

Those of us who have children with autism or other disabilities have an ongoing concern about the cost of health care and the availability of health insurance. Apparently, we aren’t the only ones.

Last week, an American Public Media radio show called Marketplace aired a story about the State Children’s Health Insurance Program (SCHIP) that surprised me. The story, titled “Children’s med plan has healthy support,” said the business community endorses the expansion of SCHIP.

Congress created SCHIP in 1997. SCHIP allows the states, with support from the federal government, to design insurance programs for children of working families. These families earn too much to qualify for Medicaid, but not enough to buy health care insurance on their own.

The House and Senate have approved different versions of legislation to continue SCHIP. The program is set to end this Friday, September 30, 2007.

Congressional negotiators have been working to sort out the differences in those two bills.

In recent days, there have been positive signs that a deal may be at hand. It is likely the
House will schedule a vote today, Tuesday, September 25 and the Senate on Wednesday, September 26.

Easter Seals has been working for decades to ensure that all children live healthy, happy and productive lives.

One sure way to help make this happen is to promote access to health insurance coverage for all children. To that end, Easter Seals supports the expansion of SCHIP.

And according to the Market Place story I heard, the business community supports it too. If the SCHIP program is expanded, businesses can hire more people without having to worry about paying high health care claims for the children of these workers.

You can listen to a rebroadcast of the story at the Marketplace Web site. While you’re there, check out the “Idea Generator” — Marketplace is looking for your ideas about making health care more accessible and affordable in the United States.

Stories of hope

by Patricia Wright

My desire to provide service to individuals with autism and their families stems from my desire to see positive outcomes for those whom I am providing this service.

I tell people that I am a teacher of students with autism. But when I tell stories about my work, I describe the success of my students — not of my teaching. I talk about the job that Duke held, the friends that Joe made and the prom that Julia attended. 

Hopefully, my role as an educator in these students’ lives promoted some of the positive outcomes.

Stories of Hope sheds a glimpse into this world of success. Take a few minutes to read about individuals with autism who have reached higher – and the support network that has allowed them to achieve their goals. 

Employment, autism and the ADA Restoration Act

by Beth Finke

All the blog comments we’re receiving about health coverage and employment for people with autism prompts me to write again about the importance of restoring the Americans with Disabilities Act.

A National Council on Disability (NCD) report called “Righting the ADA” shows that when it comes to employment discrimination against people with disabilities, the majority of the Supreme Court’s rulings favor business owners.

The Americans with Disabilities Act (ADA) is all about eliminating discrimination against individuals with disabilities. But as NCD Chairperson John R. Vaughn says, “While the provisions of the ADA addressing architectural, transportation, and communication accessibility have been implemented with notable success, the employment provisions of the ADA essentially have been rewritten by the Supreme Court.”

In other words, the ADA is not providing the opportunities and protections the people who helped create and pass it back in 1990 had in mind.

Patricia Wright, the National Director of Autism Services at Easter Seals, posted a blog about the NCD’s press conference marking the 17th anniversary of the passage of the Americans with Disabilities Act.

Two reports released at the press conference, “Implementation of the Americans with Disabilities Act: Challenges, Best Practices, and New Opportunities for Success,” and “The Impact of the Americans with Disabilities Act: Assessing the Progress Toward Achieving the Goals of the ADA” confirm that legislation is urgently needed to restore the ADA.

ADA restoration bills were introduced in the House (H.R. 3195) and the Senate (S.1881) on July 26, 2007.

Katy Beh Neas, Senior Director, Federal and State Government Relations for Easter Seals, posted the “Are people with autism ‘disabled enough’ for the ADA?” blog in order to provide links to locate your local representatives and check if they are co-sponsoring the bill.

The American Association of People with Disabilities (AAPD) has an ADA Restoration blog, and one post this week includes the names of the newest co-sponsors in the House. If your representatives are not co-sponsoring the bill yet, you can visit their Web sites for contact information and urge them to support the ADA Restoration Act of 2007.

Let’s do what we can to ensure economic self-sufficiency for Americans with autism and other disabilities.

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.