Transition team wants your input on health care policy

by Beth Finke

President-elect Obama is looking for your help in reforming the health care system to provide quality, affordable health care for all Americans. From now until the end of the year, you can sign up on the Obama-Biden transition team Web site to lead a Health Care Community Discussion in your home, community center, or even a local coffee shop. The site will provide you with a special moderator kit that will give you everything you need to get the discussion going — Sen. Tom Daschle (D.-S.D.), the leader of the Transition’s Health Policy Team, will even choose one discussion to attend in person.

Change.gov: the Obama-Biden Transition Team web site is a site for the Office of the President-elect and Office of the Vice President-elect. The Presidential Transition Act specifically authorizes the Administrator of GSA to provide services and support to the Office of the President-elect beginning the day after the election until 30 days after the inauguration to support the orderly transfer of executive power after a general election.

Maybe it’s just good politics, or the president-elect and vice president-elect just trying to make us feel like we’re part of the change to better health care. But heck, what’ve we got to lose? It wouldn’t hurt to get a Health Care Discussion going in our communities.

To sign up or for more information, go to change.gov.

With kids home from school, you need a break

by Beth Finke

Breaks from school can be hard on kids with autism — not to mention their parents! While the weather is wintry, and the kids are home from school, Here are three ways to get some emotional support without leaving the house:

1. Watch the press conference about the Easter Seals Living with Autism Study. The press conference last Tuesday was so positive — I especially liked the part when Barbara Gaither and William Snell talked about raising their sons who have autism. Some think the media coverage about studies like ours can be all doom and gloom, but in our case that wasn’t true. We have Barbara and William to thank for this — their stories about parenting their sons were so honest, and they spelled out the need for services so well. They were living examples of the way families can survive — and thrive — when services are available for children with autism and other disabilities.

   The two words “other disabilities” are very important in that last sentence. Some who know about our Living with Autism Study are afraid Easter Seals is focusing on autism at the expense of services and attention to other disabilities. This is not true, and listening to the press conference online will assure viewers that Easter Seals continues serving people with all sorts of disabilities. Including autism.

2. Read a book. Check out the “Bookstore” link on our autism Web site — the list features books reviewed on this blog. Every time you order a book through our bookstore, a portion of that sale will go to Easter Seals. Many of the most supportive and hopeful books in the Easter Seals Autism Bookstore are written by family members of people with autism — or by people who have autism themselves.
3. Keep up with our Easter Seals and Autism blog. We’ll be reviewing more books the week after Christmas, so you’ll have more to choose from.

Happy Holidays!

Living with Autism Study in the news!

by Beth Finke

It’s no surprise that the Easter Seals Living with Autism Study has been getting a lot of media attention since Tuesday, when we revealed the results. After all, autism now affects more than 1.5 million Americans and their families, and the study results paint a startling picture of the life-long fears, anxieties and critical supports needed to raise a child with autism.

A US News & World Report blog post points out how the strain on families raising a child with autism can be different than that on families raising children with other disabilities.

“But every time we look at autism versus other disabilities, the disparity is greater,” says Patricia Wright, national director of autism services for Easter Seals, a Chicago-based organization that provides services for people with disabilities. She came by U.S. News’s offices today to talk about why autism feels different than other disabilities.

We have a pretty good idea how to accommodate physical disabilities — a person with a wheelchair needs a ramp, or a person who can’t see needs Braille signs. But with autism, the disability comes in communication and social skills. “Having a colleague that would never look me in the eye?” asks Wright. “Our society is not as accommodating.”

The Chicago Tribune ran two stories. One features Wendy Murphy, a member of the Easter Seals Autism Spokesperson Network, and Another story looks closely at the findings.

The Republican, a newspaper in Springfield, Mass., caught Patricia Wright during a cab on her way to US News & World Report.

She said in a phone interview that the number of cases of autism has “risen dramatically in the past five years.”

Her information and referral service at Easter Seals, headquartered in Chicago, gets some 800 calls a month from parents with such questions as “Where can I get a speech pathologist?” and “Where can I find a school that will help my child?

“Parents are overwhelmed just by daily activities,” said Wright. “Trying to network and find resources can be overwhelming.”

MassMutual is headquartered in Springfield, and Joanne M. Gruszkos, director of the SpecialCare program of MassMutual, was also quoted in that article.

“Parents don’t want to live one day longer than their child,” said Gruszkos, and their fear is “a tremendous stressor.”

In planning for the future, said Gruszkos, it’s especially important for families with autism to work with a professional who specializes in special needs life-care planning.

Such a professional would know, for example, that having more than $2,000 in assets in a child’s name would disqualify him from government benefits, she said.

Also important, said Gruszkos, is to put into writing care instructions for the autistic child, including emergency contacts, medical history and arrangements for living, education and work. MassMutual calls this a “letter of intent.”

Read more about the Easter Seals Living with Autism Study in the Peoria Journal-Star and in Education Week (subscription only).

Blogger Kristina Chew also highlighted the study on AutismVox, and Lisa Jo Rudy covered it on the About.com: Autism blog.

This media attention is terrific. It will help Easter Seals use these findings to raise awareness of — and advocate for — the life-long services families living with autism desperately need.

Living with Autism Study reveals parents’ fears for their children with autism

by Patricia Wright

The one consistent message Easter Seals hears from families — after the initial apprehension and anxiety of learning their child has autism – is an overwhelming concern about the life-long supports their child with autism may need to be independent.

Until today, we have had no data to quantify what we’ve heard anecdotally over the years. So Easter Seals worked with Harris Interactive, and in cooperation with the Autism Society of America, to conduct the Easter Seals Living with Autism Study. The study, made possible through the generous support of Easter Seals corporate partner MassMutual Financial Group, surveyed 1,652 parents of children who have autism and 917 parents of typically developing children about daily life, relationships, independence, education, housing, employment, finances and healthcare.

I just now sat down after participating in a national press conference at the National Press Club in Washington, D.C., to announce the results. The press conference was hosted by James E. Williams, Jr., President and Chief Executive Officer, Easter Seals, Inc., who presented the key findings along with me.

We were joined at the podium by John Chandler, Chief Marketing Officer, MassMutual Financial Group ; Lee Grossman, Chief Executive Officer, Autism Society of America; and Maurice and William Snell and Barbara and Scott Gaither, who represent Easter Seals families.

The Easter Seals Living with Autism Study results reveal parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal cconnections, and employment and housing opportunities — and with good reason.

Autism is a growing public health crisis, and families are desperate for solutions and resources. Easter Seals and others in the autism community are doing their best, but current systems, structures and resources to help people with autism and their families do not adequately meet the growing need,
especially for adults with autism.

Easter Seals will use the study results to raise awareness of and advocate for the life-long services millions of families living with autism desperately need — including school to work transitions, employment support, residential and community support, and financial planning.

Easter Seals strives to make data-based-decisions, and with this study, the disparities that parents of typically developing children and parents of children with autism experience can now be shared via solid numbers.

For parents of kids with autism, there are no simple answers. There is an urgent need for increased funding and services — especially for adults with autism. Easter Seals wants to help change all of this and make a difference for families living with autism today.

Download the Easter Seals Living with Autism Study results and key findings.

Holiday tips for families with autism

by Beth Finke

The holidays can be an especially difficult time for people with autism. And who can blame them? Changes in routine, different demands, new foods, sounds, textures — what a challenge!

A holiday post on the ABA4Autism or other Neuropsychological Disorders blog offers tips to make the winter holidays better.

1. Try to keep your child in his or her usual routine as much as possible.

2. Sensory over stimulation — the lights, the sounds, the smells, the relatives touching your child — are the main culprits during the holidays. Eliminating or minimizing these culprits are your best bet.

3. Some families who have children with autism or other neuropsychological disorders wait until Christmas Eve to put up their tree and decorate.

4. Some families let their children with autism or other neuropsychological disorders do all of the decorating. Children with autism or other neuropsychological disorders may line up or stack decorations rather than decorate in the traditional way, but so what.

5. Rather than try to do the Christmas shopping with children with autism or other neuropsychological disorders in a crowded, noisy mall, many families shop by catalogue or online and let the child point to or circle the toys he/she wants. Websites, such as www.stars4kidz.com, offer a variety of toys for children with autism or other neuropsychological disorders. Just type “autism toys” in your search engine.

6. Tactile toys are often a better choice for children with autism or other neuropsychological disorders. Toys that make sounds or involve too much stimulation or are too complex may not cause an aversive reaction in the child. As mentioned above there are web sites that sell toys designed for children with autism or other neuropsychological disorders. Try ordering some of these toys and then let your child select the ones to play with as they are unwrapped.

7. Talk to relatives before they come over about the best way to behave with children with autism or other neuropsychological disorders. Have them read my article, “What Horses Tell Us About Autism,” which is available for free on the second page of my website.

8. Generally, kids with autism or other neuropsychological disorders do better in the morning than in the late afternoon or evening when they are tired. It may be better to schedule Christmas events at these times.

9. The parents of children with autism or other neuropsychological disorders need to relax themselves. Often the child with autism picks up on the parents’ stress and that is enough to ruin Christmas.

10. And last but not least, realize that you are probably not going to have a perfect food, perfect decorations, and perfect gifts. Christmas with children with autism or other neuropsychological disorders may not be traditional, but it can still have real meaning. (Sometimes I wonder if children with autism or other neuropsychological disorders know that Christmas has become too commercial.)

We’re off to Wisconsin this weekend to celebrate an early Christmas with our grown son Gus in his group home. I’ll keep some of these tips (especially the one reminding parents to relax!) in mind.

Join us Tuesday as Easter Seals unveils its Living with Autism Study

by Jim Williams

Please join us this Tuesday, December 16 when we unveil Easter Seals’ Living with Autism Study, a nationwide study made possible through the generous support of Easter Seals National Corporate Partner MassMutual Financial Group and conducted by Harris Interactive.

The study asked families from Easter Seals and the Autism Society of America about their concerns for their children with autism (up to age 30). Their issues were then compared with parents of typically developing young people. The contrast is stark — our key findings show that Easter Seals’ work to provide services is just the beginning.

We are releasing the study findings Tuesday, December 16 via a press conference at the National Press Club in Washington, D.C., from 9:30 to 10:30 a.m. EST. You can join us in a live Webcast online and be among the first to hear the findings and take away new insights into the ongoing challenges facing individuals and families living with autism. Online attendance is free, and no other special technology is needed — you’ll be able to see and hear the information provided in real time just as if you were present at the event.

We are excited about the opportunities this study offers Easter Seals to address the very real concerns of families living with autism — to the media, to our national and state legislators, and to other current and potential community partners. In January, we will begin to host local autism community forums (thanks to additional support from MassMutual Financial Group) to start the conversation about solutions for families. Stay tuned for those local autism community forums, and in the meantime, join us this Tuesday, December 16 from 9:30 a.m. to 10:30 a.m. EST.

And be sure to come back to the Easter Seals and Autism blog next Tuesday to get the Study results and key findings.

Vaccines and autism … controversy or not?

by Lisa Tate

A Today Show feature about autism that aired back on October 30 is still weighing heavily on my mind. Matt Lauer spoke with Dr. Nancy Snyderman — she had recently interviewed Dr. Paul Offit, the author of Autism’s False Profits: Bad Science and Risky Medicine and the Search for a Cure. Offit disputes the link between Vaccines and Autism.

When Lauer referred to the topic as “controversial” he was quickly corrected by Snyderman. She passionately stated the link is not controversial, saying the science supports no link in many documented scientific studies.

Snyderman’s statement about the lack of controversy concerns me. As a provider of services to children from birth to age three and their families, I find it important to listen to parents as they share their thoughts and their fears regarding media attention surrounding autism and vaccines. Listening helps me provide support.

Anyone who provides services to and listens to families of children with autism quickly learns that the question of the cause of autism weighs heavily on their minds. It is still controversial.

Here’s one thing I know that is not controversial, though: until a cause and a cure is found, Easter Seals is dedicated to doing what we’ve always done — supporting people with autism and their families today by providing supports and services to those living with a diagnosis.

Starbucks’ grande gesture for people with disabilities

by Paula Pompa-Craven

Over a year ago, I was invited to represent Easter Seals at a two-day meeting at Starbucks Headquarters in Seattle, Washington. There were about a dozen disability services and advocacy organizations represented at this meeting, along with a dozen or so members of the Starbucks team. We were there to provide input as to how Starbucks could better market to — and increase customer service to — people with disabilities.

The group looked at all aspects of Starbucks — including the physical store, marketing campaigns and product displays. We had a discussion about the rise in the number of people diagnosed with autism and talked about how Starbucks could possibly share information at the stores about Autism and services for autism. You know, like they did recently for the presidential election. We also spoke about having “smart” stores where the environment could be modified for people with sensory needs. Suggestions were made about possibly changing the volume of music, dimmer lighting, and so on.
It was a great two days of idea sharing, and I had a chance to meet a lot of really great people from all over the country. The Starbucks representatives seemed very receptive to our suggestions.

After the meeting, we heard very little from Starbucks (except that they were going through some corporate changes). But then last week, I received an e-mail from Marthalee Galeota, Program Manager of Accessibility at Starbucks. The email introduced the new Braille and large print beverage brochures at Starbucks — these brochures were based on a recommendation from our group. Marthalee credited the guidance and support provided by our group for this accomplishment! It was a long time coming, but hopefully just the start for Starbucks and their increased awareness of people with disabilities as a strong customer and employee base.

Maurice reaches new heights at the Sears Tower

by Maurice Snell

I welcome you all to this FUN holiday season. I hope every one of you has already finished your Christmas shopping! If not, you have 23 days left until Christmas to buy presents for your loved ones!

I’m writing to you about the great changes Easter Seals made prior to the holiday season. First of all, Easter Seals Headquarters just moved their offices to the 24th floor of the Sears Tower. When I first walked into the new office, all I saw was great atmosphere. It was amazing! Easter Seals has found themselves at home in the tallest building in the United States.

To celebrate, on the afternoon of December 1, Easter Seals and other tenants of the Sears Tower joined in the lobby for the annual lighting of the holiday tree. Many contributors stopped by and celebrated, including the Chicago Fire soccer team’s Brian McBride and Jarrett Payton, son of the late great Chicago Bear Walter Payton.

The afternoon started with some orchestral music, setting the atmosphere right. There were words of inspiration delivered by our own Jeanne Sowa and yours truly. After that, the crowd gathered to watch me — along with Brian McBride and his family — turn on the switch to light the tree. It was a memorable experience to take center stage and make history.

As I mentioned at the end of my speech, the holidays are the time of giving back; especially give back to those families affected by different disabilities. As a former client and current employee of Easter Seals, my mission is to continue giving back — I give to others what Easter Seals has given me. That’s the spirit of the holiday season!

Except Me: Award-winning radio piece about a brother with autism

by Beth Finke

I love making homemade bread. Kneading can get tedious though, so I usually listen to the radio during that part of the process. On Thursday morning, while preparing a loaf to bring to my sister’s house for Thanksgiving, I switched on National Public Radio.

Lucky me — they were playing all the winners of the Third Coast Festival’s Richard H. Driehaus Foundation radio essay awards! I happened to hear the “Best New Artist” winner’s essay — Except Me — about a teenager who has a little brother with autism.

Andrew Skillings is 11 now, but he was first diagnosed with Asperger’s Syndrome, a high functioning form of autism, when he was just two. Andrew’s challenges impact the whole family, especially his older sister Marissa, who struggles to find normalcy in a life that revolves around her disabled little brother.

One of my favorite lines from the essay is this: “I don’t hate my brother — I’d kill for him. But there are times I’d like to kill him, too!” Except Me is a very honest — and sweet — piece of work. If you missed hearing it Thursday, you can still hear this award-winning essay online.

I was so captivated by the piece that I ended up kneading my bread twice as long as usual!