Autism insurance sure can be confusing

by Patricia Wright

Autism insurance mandates have been passed in 29 states. Clearly something to celebrate! Unfortunately though, some challenges have come along with the coverage.

MedClaims Liaison and Autism Speaks recently conducted a survey on the issue of autism and insurance. The majority of respondents indicated confusion around their own state’s law and how it impacts their coverage. Seventy-seven percent of respondents are frustrated by the process of dealing with medical bills and reimbursements.

Trying to access effective treatment, and then trying to pay for those services, is challenging for families. And these are families who are already experiencing significant stress. Medical insurance covering autism treatment is definitely a step forward. Now I guess we all need to work together to make the system of care transparent and accessible to the people truly in need: families and children living with autism.

A perfect escape for kids with autism

by Beth Finke

With spring break coming up, you might want to take a look at this great article in the spring 2012 edition of Special Parent magazine. The piece is called Five Travel Ideas for Families with Kids on the Autism Spectrum, and I appreciated the way Author Cindy Richards acknowledges that it’s tough to predict what destination will work for kids on the spectrum — in fact, places that work for kids on one part of the spectrum don’t always work for kids with Asperger’s and vice versa.

With that caveat, the author offers five suggestions: book a condo, house or suite (rather than a small confining hotel room); visit during a less chaotic period; look for places that offers special programs for special needs visitors; visit a dude ranch; and consider Madison, Wisconsin.

Richards goes into detail about each suggestion, and I was especially tickled to read about Madison. My son’s group home is near Madison, and it’s a great place to go with Gus: vibrant, yet calming at the same time.

The article is spot on when it says, “The capital of Wisconsin has a small town feel, but a plethora of autism-friendly attractions and support programs.” And I’m giving the city of Madison extra points for having the wisdom to have an autism expert on staff. Richards quotes Judy Frankel (public relations manager for the city’s visitor bureau) in the piece, and Frankel has a son with autism.

Zzzzzzzzzzzz

by Beth Finke

My husband and I went to Wisconsin over the weekend to visit our son. Gus is 25 years old and lives in a group home with three other guys. In many ways it is nearly impossible to believe he’s old enough to live on his own already. But then when I think about it, hmmm. He really did age us when he was still living at home!

Gus has always, always had problems falling asleep. And then he had problems staying asleep. As a result, so did we. Research published in the Journal of the American Academy of Child & Adolescent Psychiatry shows that children with autism sleep significantly less than typically developing kids in a 24-hour period. Recognizing this, the Vanderbilt Kennedy Center has created a resource that might help improve sleep for children and teens with autism. The
toolkit is called Sleep Strategies for Children with Autism: A Parent’s Guide and it offers ideas for families whose children with autism have difficulty falling asleep and staying asleep through the night.

It goes without saying that we’ve missed having Gus at home since he moved away … but I have to admit: I really do appreciate a good night’s sleep now! If you are suffering from sleep deprivation at home, read this toolkit for ideas. And hey, you don’t even have to lose sleep worrying how much the resource guide will dent your wallet: you can download the toolkit for free!

A real game-changer for children with autism

by Jim Leiker

Easter Seals Capper Foundation received a generous gift of five iPads from the Downtown Topeka Rotary Club Foundation on February 16th. The iPads can be loaded with special applications for communication that will assist nonverbal children with autism or other disabilities to communicate with audible sentences. Children will be able to select images on the iPad screen, and the images translate into words to form sentences, allowing the children to audibly express their thoughts.

This is a real game-changer for children with autism, and their families are amazed at the abilities that can be demonstrated via the iPad. The kids are able to communicate. They are able to express understanding, emotions and preferences in a way that wasn’t possible before.

Research from the National Center on Educational Outcomes shows that when kids with significant cognitive disabilities have access to appropriate assistive technology they are often able to demonstrate abilities that might have otherwise been lost or unseen. We are very grateful to the Rotary for bringing up-to-date assistive technology to children and their families who might otherwise not have access. Thank you.

Spacious halls, natural lighting and larger therapy rooms!

by Allison Knopp

Read Allison Knopp’s biography

We just opened a new facility here at Easter Seals DuPage and the Fox Valley Region, and it has made the news. The new space offers bilingual social work therapies in English and Spanish in addition to our recognized therapy services.

Our President and CEO Theresa Forthofer was quoted in a TribLocal article saying that this new facility (in Elgin, Illinois) is “a vital step” in helping more families. “The quality of our facility was achieved with careful planning in order to match the excellence of our skilled and experienced therapists,” she told the reporter, pointing out that our other space was older, darker and very crowded. “Our therapists are some of the best in the nation. We wanted (the space) to match that level of service.”

Every year here at Easter Seals DuPage and the Fox Valley Region we provide physical therapy, social work programs, early learning intervention and occupational and speech therapy for more than 1,000 people who have autism and other disabilities. Our new facility is 7,200 square feet and features more spacious halls, natural light and larger therapy rooms for us to serve these clients.

Look for us in the news again next week — we’re having our official ribbon cutting and open house on Thursday, March 8!

Two brothers with autism: a 17-year-old tells all

by Beth Finke

A while back I posted a review of Mary McHugh’s book Special Siblings: Growing Up With Someone with a Disability here on the Easter Seals and autism blog. From that post:

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.

Five years later, a teenage special sibling has published a book of his own. It’s called Here’s What You Can Do: A Teenagers View of Joy, Laughter and Hope While Living in a Family with Two Brothers Affected By Autism and you can download a PDF of it here for free.

The author, Alek Gensel, is 17 years old, and two of his brothers have autism. His book outlines methods he uses to live in what he calls a “non-typical family.” He also shares personal experiences that give him “a certain attitude that ultimately leads me to happiness — much more happiness — than if I let the situation define me instead of defining the situation for myself.”

Gensel’s book is well organized, arranged by the “4 A’s” the author uses to manage life at home: Acceptance, Affection, Appreciation, Availability. Pretty smart stuff for a 17-year-old! Alek Gensel’s book is far from being a “poor me, wonderful me, look at my special life” memoir. It provides helpful examples and suggestions for siblings of children with autism. Best of all, just like Mary McHugh’s book, Alek Gensel’s is beautifully honest.

Let’s give all children with autism the support they need

by Beth Finke

A study published in the Journal of Autism and Developmental Disorders reports that children with autism who come from minority backgrounds are more delayed than their caucasian peers on the spectrum. Researchers at the Kennedy Krieger Institute in Baltimore assessed 84 toddlers with autism from a variety of ethnic backgrounds and found significant differences between white children and their non-white peers that spanned from language to communication and gross motor skills. Researchers say one likely reason for this delay is that in minority communities, symptoms go unnoticed longer.

The fact is, we’re just not doing enough for our nation’s youngest and most vulnerable children. Far too many infants and toddlers are being left behind — every year, we as a nation fail to identify more than one million children, all under the age of five, who have a disability or are at risk for developmental delay, and many will never catch up. But we know young children with autism can succeed in school alongside their peers if they receive early intervention services — therapies that work to strengthen their physical, social, emotional and intellectual abilities at a very young age. That’s why we launched our Make the First Five Count awareness and advocacy campaign last year. Make the First Five Count is our effort to give children with or at risk of autism, developmental delays or disabilities the right support they need to be school-ready and build a foundation for a lifetime of learning.

We can give every child an equal opportunity to learn and grow, but we need to get kids the help they need in the critical years before they turn 5. If you believe all kids deserve a chance to learn, build lifelong skills, and live up to their full potential, your elected officials need to hear from you. Please visit the Make the First Five Count site and learn how you can add your voice to this important issue. You can also download our report on the availability of early intervention services in your state.

The real story about early autism diagnosis

by Patricia Wright

Early identification of children with disabilities is important to Easter Seals. Our recent awareness campaign, Make the First Five Count, was launched to ensure the screening of all children and any child showing a delay receives appropriate early intervention services. There has been a lot of media attention since the American Journal of Psychiatry published a study last Friday about emerging research imaging to identify children as young as 6 months of age. This research isn’t yet to the level to be used by the general public, but the study was picked up by a large number of media outlets nonetheless.

The general public is clearly interested in identifying autism early, and so am I. I have seen the fantastic outcomes that can result from children with autism getting the services they need at the youngest age possible. Whether it’s brain imaging or a new behavioral diagnostic tool I am all for earlier identification, but the researchers conducting brain imaging studies have more work to complete before it can be determined if brain imaging is a good way to diagnose autism.

Current best practices in autism identification can provide a diagnosis as early as 24 months, but even though we have diagnostic tools to diagnose two-year-olds, the average age of diagnosis is still at age 4.5 years. What I’d really like to see the media cover is why this 2.5 year gap exists between our ability to diagnose autism and the age that so many children are finally diagnosed.

Kudos to the brain imaging scientists and their recent accomplishment. Thank you to the media professionals who are interested in covering early autism diagnosis, and a shout-out to all of us to keep working to ensure children with autism are diagnosed and receive quality intervention at the youngest age possible.

Shop at Food Lion and support Easter Seals

by Beth Finke

This week Food Lion launched its annual Shop&Care campaign to benefit children receiving Easter Seals services. Since 1991, the Food Lion Shop&Care program has raised nearly $30 million to help children with autism and other disabilities get a healthy start.

This year’s program runs from February 15 to March 13 in all participating Food Lion and Reid’s stores throughout the 11 southeast and Mid-Atlantic States. When you donate $1 at the register, you will receive $9.50 in money-saving coupons.

Food Lion’s goal is to raise $4 million in 2012. Here are ways you can participate:

• Make an online donation today.
• Donate $1 at check and receive $9.50 in coupons from Kraft and Proctor & Gamble (each time you redeem a coupon, these manufacturers will make an additional donation to Easter Seals, up to $50,000 each).
• Food Lion will donate $0.25 to Easter Seals for every 24-pack of Food Lion water purchased during the campaign (at participating Food Lion stores).
• General Mills will donate $0.10 (up to $50,000) for every participating product you buy. Look for specially marked packages and pallet displays in participating Food Lion stores.
• Look for specially marked packages of Breyer’s Vanilla Ice Cream. Unilever is donating $10,000 to Easter Seals.

We’re proud to partner again with Food Lion to support services that offer help, hope and answers to individuals with special needs and their families. Just think: by shopping at Food Lion this month you can feel good about helping people and save money at the same time!

Stamps of approval

by Beth Finke

In my other life, I’m a writing teacher. I give seminars on writing at libraries and conferences, and I teach a weekly memoir-writing class for senior citizens here in Chicago.

Earlier this month my memoir-writing class was all a-twitter about a new Black Heritage stamp the U.S. Postal Service had released that day honoring publishing legend John H. Johnson. Johnson was the founder of Johnson Publishing Company, which publishes Ebony and Jet magazines. A number of my writing students had attended high school with him here in Chicago, and one had even run against him for class president. “He won,” she lamented. “I was an also-ran.”

Today I learned that come this April, I’ll have even more postage stamps to celebrate: on April 2, 2012, the United Nations Postal Administration is going to issue eight autism awareness stamps. The U.N. Postal Administration issues stamps every year to call attention to different causes, and 2012 is the first year these stamps will highlight autism awareness. From a Disability Scoop article:

Artwork for the stamps was solicited from artists with autism around the globe. The eight winners include five from the United States.

“It was an extremely difficult and challenging process to choose only eight designs from all of the artwork submitted,” said Rorie Katz, creative director for the U.N. Postal Administration. “All of us were personally touched by the stories of the artists and their families who are extremely passionate and supportive about raising awareness for autism.”

These special stamps will be available at U.N. offices in New York, Geneva and Vienna, and the postage is valid for mailing correspondence from any U.N. location globally.