Historic health care reform

by Katy Beh Neas

I’m sitting in the auditorium at the Interior Department waiting for the president to speak. He just signed the health reform bill into law. I’m struck by the history of the moment. It took our great country almost 100 years to achieve this. Easter Seals played a major role in getting us to today. I’m so proud of what we’ve been able to accomplish and what this accomplishment means for our future. In six months, all children with pre-existing conditions can’t be denied coverage. I get shivers when I think about what this means for our families. And that is only the beginning! The president just arrived. More later …

Resources for military families

by Patricia Wright

While working in Hawaii I had the chance to provide support to many families who were in the military. The needs of these families were similar to any other family living with autism — things like teaching their child social skills and supporting their children to become as independent as possible.

Being in the military did present some unique challenges, however. Military families relocate. A lot! Families have to find local services and supports with each move. And when a family member is deployed, the parent left behind has to manage all of the parenting duties on their own.

The challenges these families faced provided me with a challenge as well. It was necessary to develop a new set of skills to ensure that their family needs were being addressed. I discovered services and supports available solely to military families. There were new acronyms to learn, like EFMP, ECHO and PX.

The Exceptional Family Member Program (EFMP) offers family support services. The Extended Care Health Option (ECHO) is a supplemental program providing financial assistance for services and supplies to eligible active duty family members. I also learned about the Post Exchange (PX) — the military has its own stores where many items families needed were remarkably inexpensive.

I had to learn a whole new vocabulary to work with the military. The military truly is a world unto itself! The Organization for Autism Research has just released a new resource for military families. Life Journey through Autism: A Guide for Military Families hopes to give family members:

• An understanding of autism and related intervention and treatment.
• Strategies for addressing the challenges of autism from the time of diagnosis through adulthood.
• An overview of the Department of Defense (DoD) and service policies related to having a child with autism.
• Information on autism treatment options and coverage within the military healthcare system
• Practical information and tools to guide your child’s education
• Tips and advice relative to transitions such as permanent change of station (PCS) moves, new schools and more.
• Links to additional resources relative to autism and military families.

The resource is free to military families and $5 for the rest of us. I know as a service provider to military families I would have loved to have had this resource in my back pocket.

Ozzie Guillen hosts Easter Seals family at Sox spring training

by Maurice Snell

Remember the blog post I wrote about White Sox manager Ozzie Guillen offering the Martin family to accompany him and other Sox players for a week at spring training in Arizona in 2010? Well, this is the week! The Martins are in Arizona right now! Here are some details from a White Sox press release:

Guillen will host Pete and Margaret Martin, along with their son Noah (age 10) and daughter, Hannah (age 8), from March 14-18. Noah and Hannah are both students at the Easter Seals Therapeutic School and Center for Autism Research. Noah was serving as a child ambassador for Easter Seals Metropolitan Chicago (ESMC) at the organization’s annual Gala where he met Guillen, who then invited Noah and the whole Martin family to Arizona.

A complimentary rental car, along with generous gift bags, will be provided to the Martin family courtesy of Avis, a corporate partner of the White Sox. Complimentary lodging will be provided by the Wigwam Resort in Glendale.

While in Arizona, Guillen has invited the Martins to the White Sox game on March 15 vs. Kansas City. They also will receive a special behind-the-scenes tour of the White Sox facilities and have a special meet-and greet with Guillen and the team.

Guillen has been very active with ESMC the past three years, having visited the school on several occasions, accepting the 2008 Corporate Award on behalf of the White Sox organization, and joining the Board of Directors in 2009.

When I first heard of Ozzie joining the Board of Directors, my jaw dropped. I am a lifelong Sox fan, and it was a good feeling for Ozzie to be involved in Easter Seals services in the Chicago area because he truly cares about the individuals living with autism. Whenever he and the White Sox organization visit the Therapeutic School, his first priority would be to see the children in the different classrooms because he has a huge heart for people with autism and believes they can make a huge impact in life successfully.

When I first met the Martin Family at Easter Seals, they were determined for their son, Noah to live a normal life. Like me, Noah was rolled up like a ball in a corner when he first attended the Therapeutic School. Everything was difficult for Noah in the beginning, being non-verbal in the beginning and struggling to adapt, which reminded me of my frustrating days entering the Therapeutic School.

As of right now, Noah is doing well in many different services and he is a shining star to the different students and staff. I couldn’t be happier for the Martin Family. Martin Family, if you’re reading this blog, I wish you all a nice trip and I know you’ll have fun out there. Be sure to get a lot of sun and autographs!

Funding autism services: the Census counts!

by Beth Finke

My husband has been working for the U.S. Census Bureau since January. He doesn’t go door-to-door (not yet, anyway) — he works as a recruiting clerk. Five days a week he heads to our local census office to grade the tests people take when applying for a Census job, keys in information, files forms and answers the phone when applicants call with questions. These days when we sit around at home talking about work, the conversation centers around autism, blogging, and … counting!

I figured ours must be the only “Easter Seals and U. S. Census Bureau” marriage. But then, just this week, I found out that Easter Seals has partnered with the U.S. Census Bureau to spread the word about the 2010 Census.

Census data is used to distribute more than $400 billion in federal funds to state and local governments each year, to apportion congressional seats to states and to make important decisions about what community services to provide. The 2010 Census questionnaire is only 10 questions long and should take about 10 minutes to fill out. An accurate count of people with autism and other disabilities is very important because the census count is used to distribute federal funding for Medicare and Medicaid, SSI, Rehabilitation Act, special education and many other grants and programs.

Most census questionnaires are mailed or hand-delivered during March and due to be returned by April 2010. Census workers will go door-to-door to visit households that did not return their forms from April through July 2010.

Completing the 2010 Census questionnaire is simple and safe. For more information, link to the U.S. Census Bureau’s Web site.

People with autism are lifelong learners

by Michael Pelfini

You probably know that guest blogger Laura Shumaker published a post here last week about our Easter Seals Bay Area Autism Community Forum. What you may not know is that Shumaker also wrote an article for the San Francisco Chronicle about the forum.

Laura Shumaker is the mother of a 23-year-old son living with autism and author of a book called “A Regular Guy: Growing Up with Autism.” In her article, Laura walks readers through the experience that she and her husband had in trying to get the best treatments available for their son Matthew when he was five years old.

That’s when we learned about the Lovaas Model of intensive behavior intervention, a highly structured program that used positive reinforcements to reward appropriate behavior. The treatment was administered five to seven days a week with one-on-one tutors. Each session lasted from five to seven hours, totaling an average of 35-40 hours per week — a huge commitment and very expensive. (The program has evolved into the more accessible ABA.)

We read that “a large minority” of children who received the treatment were able to achieve normal educational and intellectual functioning by 7 years of age.

“Matthew’s a little too old for this therapy,” we were told, “The ideal window for the Lovaas method is between the ages of 3 and 6.”

Enter Easter Seals, says Shumaker. She attended the Easter Seals Bay Area Autism Forum and was able to speak with both Patricia Wright and Matt McAlear about what is currently available for children and families affected by autism.

“Things sure have changed,” says Matt McAlear, Vice President and Chief Program Officer of Easter Seals Bay Area. “Now we know that people with autism of all ages are capable of making significant progress through personalized interventions and therapy. They are capable of leading fulfilling lives.”

It’s an article worth reading. I especially like the title: Autism: is there life beyond early intervention? Easter Seals says yes.

The Texas snow couldn’t stop us!

by Jennifer Friesen

The Easter Seals Autism Spokespersons Network and Affiliate Marketing Partners met in Dallas last month during a record-breaking snowfall. Although 12 inches of snow was falling outside, the group of 50 experts joined Texas legislators and other members of the Easter Seals North Texas (ESNT) autism community to make the trek to ESNT’s Trinity Center in Carrollton, Texas.

The members of the Autism Spokesperson Network are autism experts and therapists who work in markets across the country providing help, hope and answers to children and adults living with autism. Each of us is a strong media resource and interview subject to include in discussions, news segments and features about autism … and each of us is happy to open doors for visits to local centers and introductions to families involved in autism treatments.

The spokespeople who visited in February were especially interested in hearing about our partnership with the University of North Texas and learning about our Autism Treatment Program (ATP). I, along with Nicole Zeug (ATP Program Manager) and Dr. Shahla Ala’i-Rosales (Department of Behavior Analysis at the University of North Texas) gave a presentation about the program. We shared information about the program design and systematic procedures, and then we got to the best part: the client stories.

One client started our program about nine months ago. Before he began receiving Applied Behavioral Analysis intervention, his language was extremely limited. When it came to meals, he only ate pizza, chocolate chip cookies, and limited types of dry cereal. Now, after receiving about 20 hours of direct intervention each week, he is talking in full sentences, asking and answering questions, and eating a variety of fruits, vegetables, and proteins. This client’s mother talked with the Spokesperson Network members, conveying a message of hope to families and encouraging families to seek the sort of help and support she found through the Autism Treatment Program here at Easter Seals North Texas.

We at Easter Seals North Texas feel so fortunate to have a program that is able to help families affected by autism. The Autism Spokespersons Network and Affiliate Marketing Partners make an impressive group. We were proud to host such professional, compassionate, and knowledgeable people from across the country.

It’s never too late to learn as we grow

by Matt McAlear

One of my favorite things about living in San Francisco (other than the weather — sorry East Coasters!) is the people that make up our city. Our population is made up of dynamic, intelligent and progressive thinking individuals. It’s my pleasure to introduce to you one of those people … and today’s guest blogger, Laura Shumaker. Laura is a writer for the San Francisco Chronicle, mother of a young man living with autism and author of a book called “A Regular Guy: Growing Up with Autism.” Laura has become a great friend of Easter Seals Bay Area — enjoy reading!

Learning as we grow
by Laura Shumaker

When my husband and I suspected that our 3-year-old son Matthew might have autism, we believed we could “nip it in the bud,” but we had no idea how. Our pediatrician didn’t have a clear idea, either, so we bombarded Matthew with speech therapy, play therapy, auditory training therapy (because it cured that girl on Oprah), and countless other therapies that didn’t make any sense. We felt like we had to do something in a hurry before Matthew was ready to start school and real autism “set in.” By the time Matthew was 5 years old, though, we could see that we hadn’t done enough.

I was reminded of our cockeyed view of autism when I attended the Easter Seals Bay Area Autism Community Forum in Oakland last month. The message of the forum — that people with autism of all ages are capable of making significant progress through the lifespan — was an epiphany for me. Matthew is 23 years old now and making progress, but until I went to the Autism Community Forum last month, I still believed early intervention was the only real time treatment that mattered.

In her keynote, the wonderful Patricia Wright, National Director of Autism Services for Easter Seals, told me just how wrong I was about that. In her speech, Dr. Wright talked about her passion for providing evidence-based treatment for individuals with autism through the lifespan. She said that families, educators and service providers can be bombarded by a massive amount of confusing and sometimes conflicting information about the countless treatments available.

Amen!

Patricia told us that the National Autism Center had recently completed an unprecedented multi-year project — the National Standards Project — to establish a set of standards for effective, research-validated educational and behavioral interventions for children on the spectrum. These standards identify treatments that effectively target the core symptoms of autism spectrum disorders.

I could have used the results of this project all those years ago. I remember feeling guilty when I didn’t try every single treatment that came along. Now parents have a reference point that they can trust. The National Professional Development Center on Autism Spectrum Disorders is another organization that promotes the use of evidence-based practice for children and adolescents with autism spectrum. They provide professional development to teachers and practitioners who serve individuals with autism from birth to age 22.

It’s hard to teach a tired and brainwashed mom new tricks. All these resources and I still couldn’t help but wonder what the best treatment for autism is. “When we talk about treatment for individuals with autism spectrum disorders through the lifespan, we’re not just talking about therapy treatments,” Dr. Wright said, shaking me by the shoulders (not really, but I’m sure she would have liked to). Patricia explained that “lifespan” includes providing job supports and development as treatment. Building social skills and assisting with appropriate interaction in the break room is treatment. Anything that helps individuals lead fulfilling lives is a necessary component of treatment.

I get it now. Thank you, Easter Seals!

General Mills joins Food Lion in helping Easter Seals

by Beth Finke

Good news! Food Lion’s Shop&Care campaign doesn’t end until Tuesday, March 9th. That means you still have time to shop at Food Lion, save money and help children with autism and disabilities get a healthy start.

For nearly a month now, cashiers at Food lion, Bloom, Bottom Dollar Food and Reid’s have been asking customers to join them in supporting Easter Seals by giving a donation at checkout. If you hurry in this week, you can join the others who have donated $1.00 and posted their name on an Easter Seals Shop&Care hang tag.

And while you’re shopping at Food Lion, here’s another way you can help Easter Seals. General Mills has produced specialShop&Care co-branded packages for four of their cereal brands: Cheerios, Honey Nut Cheerios, Cinnamon Toast Crunch and Lucky Charms. If you buy any two of these specially marked Shop&Care cereals, General Mills will make a donation to Easter Seals.

General Mills is a long-standing supporter of Shop&Care, contributing more than $1 million to Easter Seals since 1991. This is the fourth year General Mills has created these special cereal boxes for Easter Seals. A hearty thanks to General Mills, Food Lion and you, their customers! Together you’re helping children with autism and disabilities get a healthy start.

We love the ‘Dallas Moms’ Blog

by Beth Finke

Hats off to the Dallas Moms Blog for its post about the Easter Seals Autism Spokespersons Network (ASN) meeting in Dallas last month.

Easter Seals is the nation’s leading non-profit provider of services for individuals with autism and other disabilities, and the Dallas Moms Blog explains why it is so important that we get word out to those who need our services.

Many people in our society today may not know that Easter Seals has been a great source of information, services and support for families living with various disabilities for nearly a century. With the sharp increase in Autism diagnoses over the past two decades, Easter Seals astutely recognized the critical need for quality treatments for young children, on-going support for families and continued services for adolescents, young adults and grown men and women living with Autism Spectrum Disorders (ASD). Not only does Easter Seals work “nationally to provide children and adults with autism individualized treatment plans and comprehensive services,” they also advocate in our nation’s capital for increased research financing. Their motto is basically that any person living with an ASD, no matter the age at diagnosis, is capable of tremendous progress through individualized therapies and interventions so that they may lead meaningful lives.

The author of the poast, Leigh Attaway Wilcox, has a son with Asperger’s Syndrome. She sat on a panel at the Autism Spokespersons Network meeting last month, where Easter Seals Autism Spokespersons Network and Affiliate Marketing Partners met in snowy Dallas to network, brainstorm and share ideas of ways to let people know about Easter Seals’ extensive array of autism services. Dallas Moms Blog Administrator, Healthy Living writer and Dallas Morning News columnist Nancy Churnin was also on the panel

The group of experts Nancy and I met last week are proactive, devoted people focused on spreading the word that Autism is treatable and that Easter Seals might be a good place for families to find help. Their questions for Nancy centered around professionally approaching members of the media to effectively utilize the mainstream media to share information about ASD across the nation.

Nancy graciously shared information, including what a typical week might look like in her office at the Dallas Morning News. She also offered information regarding the kinds of things which have motivated her in the past to write about special needs topics in the Healthy Living section of the paper. I was personally asked to share tips and suggestions for blogging about special needs topics, with ASD front and center.

Members of the Autism Spokespersons Network must have been taking notes during that panel — since that meeting in Dallas we’ve published a post by ASN member Lisa Tate from Easter Seals Central Texas, one from ASN member Erin Rogers of Easter Seals Peoria & Bloomington-Normal, and one from Affiliate Marketing Partner Mike Pelfini of Easter Seals Bay Area. Keep your eye on the Easter Seals and autism blog for more posts from ASN members in the future.

Thoughts on the Wakefield study

by Lisa Tate

Those of us providing services to children with autism here at Easter Seals Central Texas often find ourselves working with families who are also receiving services from Thoughtful House, an autism center in Austin. Thoughtful House was founded by Andrew Wakefield, the doctor whose research triggered a health scare over the MMR vaccine in Britain.

A recent article in Time Magazine discredited his study; the MMR vaccine is now deemed to be safe. Medical authorities in the U.K. have also ruled that the manner in which Wakefield carried out his research was unethical.

Wakefield has resigned from Thoughtful House, and after hearing news of that resignation Dr. Arthur Kingsman (known for his evaluation and treatment of gastrointestinal pathology common in children with autism spectrum disorder) also resigned.

The recent Time Magazine article has served to bring the questions about vaccines back to the forefront of the minds of parents in our community. Questions continue to arise from families on a regular basis regarding any connection between vaccines and autism. As I stated in my blog in December, 2008, the questions regarding a connection between Autism and vaccines is still quite controversial and a topic of conversation with almost every family we encounter when an autism diagnosis is received.

Here’s something that is beyond question, until a cause 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.