Reimbursement for special ed at private schools

Posted by Beth Finke on July 1st, 2009

A story on NPR’s All Things Considered explains how a Supreme Court ruling last week makes it easier for parents of special education students to get reimbursed for private school tuition.

The case started in Oregon — the parents of a teenager who was refused special education services at a public high school transferred the student to a private academy during his junior year, then sued the school district to recover the $65,000 they spent on private tuition. The Supreme Court ruled in favor of the parents.

Writing for the majority, Justice John Paul Stevens said it would be wrong to reward the school district for refusing to find a child eligible for special services. Attorney David Salmons represented the family and pointed out afterwards that the family has won only the right to argue for reimbursement.

“Keep in mind,” he says,” that the decision today does not guarantee the parents reimbursement for private school tuition. The parents have the burden of showing that there was a failure to provide a free appropriate public education, and they have the burden to show that their private placement was appropriate.”

Still, Lindsay Jones of the Council for Exceptional Children worries that the majority decision will hurt school systems by removing the incentive for parents to collaborate with educators.

“Under that situation,” she says, “parents don’t have to even seek special education services or work with the district before they ask that the district pay for their private placement.”

There’s hope this decision will encourage districts to act quickly to identify students with learning problems so that future cases won’t end up in court. It’ll be interesting to see how this all plays out.

Congratulations to high school grad with autism

Posted by Beth Finke on June 30th, 2009

Yesterday’s New York Times featured a terrific story about a high school graduate who has autism. Dan Mulvaney’s story starts like so many others about kids diagnosed with autism:

Dan seemed on a normal developmental track for his first three and a half years until things went haywire. His speech suddenly stopped. He sat in a corner gnawing on his shirt. His parents first thought it would pass, then that it was a hearing issue, and finally the cold, terrifying diagnosis came.

The Mulvaney’s local Long Island school district didn’t know what to do with Dan. They told his parents that Dan would be better off at home or a “special school.” Dan’s parents thought differently. They didn’t want their son in an institution. They wanted him in a local school. They wanted him to live in his own house.

So instead, with the assistance of the district’s head of special education, Mary Tatem, they pushed and prodded, became total pests, made themselves and the district crazy but ended up with the best education Dan could hope for, one where he ate with other kids and became part of their world — good for him, good for them. And along the way, Long Beach transformed itself from a district that barely knew how to deal with special-needs kids into one of the best in the region.

Dan graduated from Long Beach High School last Sunday and will be moving into a group home with three other guys later this summer.

Dan and his parents, like so many this time of year, will start anew with both a new set of possibilities and unalterable ties to the life they’ve somehow suddenly, miraculously outgrown.

Congratulations to Dan, and congratulations to his parents.

People with autism need health insurance reform

Posted by Katy Beh Neas on June 25th, 2009

Too many people with autism and other disabilities are forced to make major life decisions based on whether their insurance meets their individual needs. Parents of a child with autism take out a second mortgage to pay for therapy that helps their child learn and manage his behavior. A young couple decides they cannot get married because one of them has Medicaid coverage which will be lost when their individual incomes become joint incomes and they cannot access private insurance.

Easter Seals needs you to tell Congress to act now on health insurance legislation — this could be the “make or break” week on securing the federal health care reform legislation we need.

Take action — tell Congress. People with autism and other disabilities need health insurance reform now.

Walk With Me TV appearance was “totally cool”

Posted by Bob Glowacki on June 24th, 2009

Last week Milwaukee Fox 6 TV featured an interview about our June 19 Walk With Me event.

The interview gave me an opportunity to spend some quality time with Stephanie Mayer and her son, Kyle. Kyle has autism, and he received a scholarship for inclusion in our P.L.A.Y. Project (Play and Language for Autistic Youngsters) last year.

We all had to wait over 30 minutes for the interview to begin, and Kyle was a pleasure to be with. He admitted he was a little nervous, and he held tight to his Buzz Light-Year and Woody toy for comfort. Eventually he cuddled next to his Mom and asked, “can I sit on your lap?”

Using cues from both P.L.A.Y. and new techniques from Applied Behavioral Analysis (ABA), Stephanie encouraged his positive behavior. You would never know the struggles the family had with Kyle just a couple years ago. I knew, though — and I was truly amazed at Kyle’s progress.

A number of months ago, the family allowed our P.L.A.Y. Consultant Amanda Dobberstein to share a few videos of Kyle. The first session showed Kyle playing with three sets of objects in less than a two minute segment. Kyle had his back to his Mom and little sister during the entire period. Kyle’s mom kept asking questions, trying to engage Kyle, but he was pre-occupied. No interaction, no warmth — just sharing a room, not sharing an experience.

Now, a year later he is cuddled up next to Mom with his toys in his lap using his “big boy voice.” Of course, moments before we headed to the studio, Kyle asked his mom, “can I go to the bathroom?” Mom answered, “not right now, dear.” Kyle waits. Patiently.

Throughout the interview Kyle sits quietly, the bright lights of TV shining in his eyes. Stephanie tells the audience how the Easter Seals autism Web site helped her realize Kyle’s need for services. What a great feeling it is to know we were there when he needed us.

Later that night, Kyle had over 30 people walk on his team at our Walk with Me event in Milwaukee. One of those walkers was Amanda Dobberstein, Kyle’s original P.L.A.Y. consultant. He and his Mom told nearly 400 walkers about the progress Kyle has made and how grateful they are to Easter Seals for providing the scholarship.

This was a day when all the pieces came together — years of planning, fundraising that resulted in a caring staff providing services that change a life. Kyle may need only limited services when he moves on to first grade next Fall because of the work of Easter Seals early on.

On a personal note, my daughter Molly tagged along to the interview. There she was, off to the side, clad in her Walk with Me tie-died t-shirt, hearing about what an impact the agency Daddy works for makes in someone’s life. She thought it was “totally cool” to meet Kyle and see a TV station. Hearing her say that Kyle is a lot like her little brother Tommy was another life lesson I was glad she gained that morning. And you know what? I thought it was “totally cool” to be at that TV station with Kyle and his mom, too.

Does Spock have Aspergers?

Posted by Beth Finke on June 23rd, 2009

It dawned on me over the weekend. I’d let Father’s Day slip by without publishing anything here about autism and fatherhood. Shame on me!

One father I rely on for insight on this topic is Matthew Baldwin. Baldwin runs the blog Defective Yeti. The blog features posts on politics, writing, movies and the like. After Baldwin’s son was diagnosed with Autism Spectrum Disorder (ASD), Defective Yeti started publishing posts about autism, too. I’ve referred to Defective Yeti in an Easter Seals autism blog post before, and when I started searching on Sunday for something father-related, I was confident Baldwin had written something interesting I could link to belatedly about his relationship with his son. Sure enough, Matthew Baldwin does not disappoint. In a Defective Yeti post about a month ago, Baldwin links readers to an op-ed piece he wrote for The Morning News last month about the new Star Trek movie.

As I watched this film last Saturday and Mr. Spock walked onto the bridge with his stiff demeanor and his formal language, my initial reaction was: “Oh man, that guy is so Asperger’s.”

Baldwin goes on to point out that Spock’s difference from the rest of the crew is central to his character. The difference is largely mental, Baldwin says, and that’s part of the cachet.

He is a man of two worlds, and cherishes the dual nature of his heritage. Unlike Data (the android in Star Trek: The Next Generation who was forever pining to “be more human”), Spock is perfectly comfortable with who he is — not a bad message to send to kids whose neurological state is classified as a “disorder.”

Baldwin describes the way Spock views and analyzes the world in a different way than the rest of the crew. Though Spock’s insight helps the crew face challenges, he is criticized for being impassive and labeled an “unfeeling automaton.”

So too have those with ASD been habitually misunderstood, their reluctance to socialize mistaken for aloofness, their difficulty making eye contact interpreted as signs of deviousness. Emotions run deep in half-Vulcans and persons with autism alike, even if they are not always apparent to the untrained eye.

At the end of his op-ed piece, Baldwin acknowledges that some people with autism might not appreciate being compared to movie aliens. Still, Baldwin says, Spock gives him hope for his son’s future.

All I can say is that, as the father of an autistic son and a lifelong member of the Trek-curious club, the new film filled me with hope. Watching Kirk and Spock — two men with vastly different worldviews — form a friendship based on mutual trust and admiration, I found myself thinking, “that’s the future I want my child to grow up in.

Hope you dads out there had a happy Father’s Day last Sunday, and that you enjoy many, many more in the future. Live long and prosper.

Adults with autism thrive at new inclusive adult day center

Posted by Bob Glowacki on June 18th, 2009

When we think of autism, we tend to think of early childhood therapeutic interventions. I received a reality check when Easter Seals Southeast Wisconsin opened a new inclusive adult day center in Kenosha. The center is located inside the YMCA of Kenosha Callahan branch, and the first three participants who enrolled there have autism. Later on, more adults with autism signed up. As of June, the enrollment is a total of nine participants — six with autism. The youngest is 19, and the oldest is 60.

While Easter Seals has been facilitating day programs in the Milwaukee area for many years, we are new to the Kenosha area in terms of providing direct care. Susan Klawien coordinates our new inclusive Adult Day Center in Kenosha, and I am pleased to introduce her as a guest blogger. Susan will share her thoughts on how the program operates and the level of support necessary.

Adults with autism thrive at new inclusive adult day center
by Susan Klawien

Our Kenosha Adult Day Services program is set up in an organized fashion — from a daily schedule of activities, to the room layout. There are places for our participants to receive sensory breaks within the room. We also give our participants the opportunity to select the activities they wish to do. This promotes independence and choice.

Through our collaboration with the YMCA, we have jobs for the participants, such as folding towels and sheets, caring for the indoor plants in the fitness area, and planting seeds in the gardens. They also learn specific activities of daily living skills each day.

Being an inclusive environment at the YMCA helps our participants adapt to surroundings and changes. YMCA patrons and staff have been welcoming in their daily interactions. Children in the YMCA’s after-school, day care, and summer camp programs have been curious, but have also shown respect and understanding.

Communication is a big factor. Some of our participants understand through sign language or verbal cues, others use different methods. Board maker pictures of the daily schedule are on the wall, and we use a dry erase board to list activity options. The options are erased after completion.

Adults with autism can — and do — lead meaningful lives. Easter Seals believes that with proper supports, adults with autism can all live, learn, work and play in their communities. Families living with autism need supports after their loved ones leave the school system. Providers need to prepare for the future strengths, needs, hopes and dreams of those individuals living on the spectrum.

Easter Seals testifies on health care reform before Senate committee

Posted by Katy Beh Neas on June 17th, 2009

Last Thursday Easter Seals staff testified before the Senate Committee on Health, Education, Labor, and Pensions (HELP), telling them that meeting the needs of people with autism and other disabilities is an important component of health care reform.

Mary Andrus, Easter Seals Assistant Vice President for Government Relations and Co-Chair of the Consortium for Citizens with Disabilities’ Health Care Task Force, told committee members that, “an essential element of health care reform is ensuring that vulnerable populations have access to coverage that meets their care needs.” Andrus also stated that, “for persons with disabilities and chronically ill older Americans — arguably the most vulnerable populations in the nation — long-term services and supports are their primary unmet care need, and are critical to promoting health and preventing illness.”

Easter Seals believes that health care reform must guarantee that all Americans, including people with autism and other disabilities, have access to high quality, affordable health care that meets their individual needs.

What can you do? Contact your lawmakers and urge them to support health care reform legislation and to support inclusion of long term services in health care reform.

Hope for adults with autism

Posted by Beth Finke on June 16th, 2009

You know the prevalence of autism statistic — that one we hear all the time about one in 150 children having autism? Well, until I read Patricia Wright’s Advancing Futures for Adults with Autism post last week, I just assumed that number had been measured fairly recently. But it turns out that the original findings from the Centers for Disease Control and Prevention (CDC) are from the year 2000. Nine years ago!

As Patricia points out, those one in 150 children diagnosed in the year 2000 are now turning into one in 150 adults with autism. The good news is that they’re following in the footsteps of some truly remarkable people. The Stories of Hope section of our Web site was just updated with some new inspiring profiles. Take a few minutes to read some great stories about adults currently living with autism — it’s always good to hear real, human stories in addition to statistics!

iPhone app for people with autism

Posted by Beth Finke on June 11th, 2009

Our son Gus doesn’t talk. I can tell if he’s hungry or thirsty by the way he smacks his lips, and he can grunt a certain way to make some of his needs known. Otherwise he expresses desires by going to the thing he wants — heading to the door when he’d like to go outside, or pushing on the piano lid when he feels like playing duets with me.

When Gus was little, his elementary school sent him home with a picture-communication-board-type thing for us to use on a trial basis. If Gus touched a picture of a cookie on the board, for example, the board would say “I’d like a snack.” The machine was about the size of a cafeteria tray and was a bit unwieldy. Once we found out how expensive a machine like this can be — a few go for $8,000 to $10,000 — we decided to stick with Gus’ grunting and lip-smacking methods.

So I was interested to hear about a new application that people with autism and other disabilities are using to communicate — Proloquo2Go is an application you can download from Apple’s iTunes onto an iPhone or iPod Touch. The total cost of the app: $149.99.

A story in USA Today describes how a 7-year-old boy with autism uses the iPhone his mother, Leslie Clark, bought for him at a local store.

A month later, JW goes everywhere with the slick touch-screen mp3 player strapped to his arm. It lets him touch icons that voice basic comments or questions, such as, “I want Grandma’s cookies,” or “I’m angry — here’s why.” He uses his “talker” to communicate with everyone …

Penn State doctoral student Samuel Sennott is a co-developer of the app. In the article, Sennott points out that using an iPhone to talk to friends provides a hip, cool way to communicate — especially important to children with autism, who can find it so difficult to try and fit in with their peers.

Using the iPhone and Touch allows developers to democratize a system that has relied on devices that were too expensive or difficult to customize, Sennott says. “I love people being able to get it at Best Buy,” he says. “That’s just a dream.”

Advancing Futures for Adults with Autism

Posted by Patricia Wright on June 9th, 2009

I recently overheard someone say, “it took us 20 years to figure out what to do in early intervention and autism — we don’t have that kind of time when it comes to adults with autism.” It’s true. We don’t have time. The much-lauded statistic of “1 in 150 diagnosed” is usually accompanied by a picture of a young child’s face.

Thing is, though, the data for 1:150 was collected nine years ago on a sample of eight year olds — that figure represents individuals who are now 17 years old! These 17-year-olds will be exiting the educational system very soon. They’ll be joining many other adults with autism already challenged by our lack of services and supports for adults.

Easter Seals is taking action to address this need through participation in Advancing Futures for Adults with Autism (AFAA). AFAA is a national consortium seeking to create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. This unique national consortium has united to set national priorities for adults on the autism spectrum and to transform public policy and programming for teens and adults with autism spectrum disorders.

In January, AAFA held a Think Tank. Nationally recognized experts in a variety of fields (e.g., individuals with autism, program operators, university professors, public policy authorities and specialists from both the public and private sectors) met to begin addressing the issue of autism and adulthood. The summary report from that think tank is available at the AFAA web site, and national town halls are next — Americans will come together across at least 15 cities on November 13, 2009 to create a policy agenda for addressing the needs of adults with autism. Over 1,000 people — including caregivers, advocates, elected officials, family members, and adults with autism — will join the discussion to make recommendations on this important issue. The event will be orchestrated from a central hub in Chicago and available nationally via webcast. The unprecedented scale and diversity of the AFAA National Town Meeting will attract attention to the issue and build momentum.

Adults with autism can — and do — lead meaningful lives. Easter Seals believes that with proper supports, adults with autism can all live, learn, work and play in their communities. AFAA is helping to make this happen.