Obama makes academic success for kids with disabilities a priority

by Katy Beh Neas

I was invited to the White House today to hear the President announce that 10 states are getting waivers under the federal Elementary and Secondary Education Act. These waivers are designed to help states improve their public education systems.

Specifically, states are to take action to improve the academic progress of all children, including children with disabilities. Kids with disabilities have actually benefited a lot from this law and its requirement that their academic progress be measured and reported to the public. As a result, kids with disabilities have had greater opportunities to show what they are made of — that they can master grade level work like their non-disabled peers.

The President actually mentioned that improving the academic success of students with disabilities is a priority for states who were awarded with a waiver. You can read the President’s remarks online and learn more about the waivers at the U.S. Department of Education web site.

Need an autism app but can’t afford it? We can help

by Crystal Ward

I am pleased to introduce Allison Knopp, Development & Public Relations Associate at Easter Seals DuPage and the Fox Valley Region, as a guest blogger today.

Check out this new Proloquo2Go App Donation Program

by Allison Knopp

Good news for Easter Seals and autism blog readers who have been reading all of the posts we’ve been publishing lately about new apps for autism, but are worried this new technology might be too expensive: AssistiveWare (an accessibility and assistive technology company based in The Netherlands) has recognized that not everyone can afford their wildly popular Proloquo2Go communication app, so they launched a new Proloquo2Go App Donation Program.

AssistiveWare sought us out here at Easter Seals DuPage and the Fox Valley Region as a partner in this program because of our assistive technology department’s outstanding reputation. Easter Seals DuPage and the Fox Valley Region has been working with AssistiveWare over the past couple of months to develop an application process that will determine a family’s practical and financial need for the donation of the application. Any applicants will first be reviewed by our financial department for compliance with the financial need requirements of the donation program, and if those requirements are met, the application will be screened by our Assistive Technology department to determine if Proloquo2Go meets the needs of the client.

Easter Seals DuPage and the Fox Valley Region is very excited to partner with AssistiveWare to help distribute Proloquo2Go to individuals who need this support for communication. Along with AssistiveWare, we too believe Proloquo2Go can make a difference in the lives of many individuals with communication impairments.

This donation program is open to anyone in the country. For more information and the policy for the Proloquo2Go App Donation Program, email Easter Seals DuPage and the Fox Valley Region’s Assistive Technology Department at assistivetech (at) eastersealsdfvr (dot org).

Incredibly close to having Asperger’s

by Beth Finke

Every year as Academy Award time draws near our department here at Easter Seals Headquarters gets to talking about the low number of people with disabilities in popular films. This year I piped up. “How about the kid in ‘Extremely Loud and Incredibly Close’?” I said. “He has Asperger’s.” Turns out I was wrong about that, though.

The academy-award nominated film Extremely Loud and Incredibly Close was adapted from Jonathan Safran Foer’s bestselling 2005 novel of the same name. It’s about a 9-year-old boy named Oskar Schell who loses his father in the World Trade Center and becomes obsessed with finding the lock to fit a key his dad left behind. I read the book last year and thought Oskar had many symptoms of Asperger’s, and some blogs and movie reviews refer to the character as “autistic” or having Asperger’s Syndrome. In the movie, however, when Oskar tells a stranger that he was tested for Asperger’s syndrome once, he says, “Dad said it’s for people who are smarter than everybody else but can’t run straight. The tests weren’t definitive.”

A post on the FilmLeaf blog explains that when it came to casting Oskar’s part, filmmakers didn’t go the child-actor route. Instead, they contacted Thomas Horn, winner of a teen version of “Jeopardy!” It’s Thomas Horn’s first acting role, and I guess FilmLeaf wasn’t listening when he gives that line about the tests not being definitive:

Thomas Horn is a gem. Asperger’s boys do make attractive narrators, quirkily articulate, just disconnected enough from the normal feelings to make readers do some feeling of their own.

I haven’t seen the film, and doubt I will — it was too weird to think of Tom Hanks and Sandra Bullock getting starring rolls. I liked the book, and I want to keep it that way.

Reading to the kids

by Beth Finke

A couple years ago my Seeing Eye dog Hanni and I traveled to Topeka to visit Easter Seals Capper Foundation. While we were there, we met with some of their clients who have autism, we got a tour of the facilities and did a talk at Capper’s all-staff meeting that day. We had lunch with folks who’d helped sponsor our trip, and in the evening I gave the keynote at their advisory board dinner. It was a lot to pack into one day, but we enjoyed every minute of it. My favorite part of the trip? No question, it was reading to the kids at Kidlink Childcare and Preschool, their inclusive preschool and child care program for children with or without disabilities.

Apparently I’m not alone. It turns out Kansas Gov. Sam Brownback enjoys reading to the kids at Kidlink, too! Gov. Brownback is a fan of Easter Seals Capper Foundation, and he stopped by there last week to read books about pets to the kids, lining up with what the children at Kidlink were learning. I have to believe my book about Seeing Eye dogs was one of the books the Governor read to them, don’t you?

iPads and apps — a mother weighs in

by Bob Glowacki

Earlier this week I shared a guest post about autism and apps. The post was written by one of our senior therapists here at Easter Seals Southeast Wisconsin, and as a follow-up I am introducing another one of our senior therapists here. Her sons both have autism, and in this guest post she explains how they use iPad apps to help them communicate.

Mom gives autism app a thumbs-up

by Autism Senior Therapist

Our two boys have come a long way over the years, and we credit a good portion of their recent improvements to the iPad and its apps, as well as to their hard work.

Zack is 8 years old and does not meaningfully use verbal language besides a handful of verbal approximations such as “dada,” “mama,” “wee” for swing, and “ah ol” for apple. Zack does try very hard to imitate the sounds and words that he hears, but when he isn’t sure, falls back on sounds he knows like “buh” or “duh” to request items. Braeden is 7 years old and has started to use quite a few spontaneous and meaningful words within the last year or so, but not always enough to convey a clear message, especially if he is upset or hurt.

Both Zack and Braeden are currently working with therapists to improve their language skills, cognitive abilities, and social awareness. The use of an augmentative communication device has helped both boys tremendously in these areas. Where there once may have been frustration, both boys are now able to look through buttons in the Proloquo2Go app on their iPad or iPhone. They select from pictures and words of items in our home, at school, and in the community to help them express themselves. Becoming frustrated has decreased significantly now that they are able to easily ask for desired items, where once they may have gotten upset when we did not understand.

The iPad requires them to hold the device and use their hands to push buttons and scroll through pages, which means their self-stimulatory hand flapping and hand clapping behaviors have decreased, too.

The iPad is able to support hundreds of educational and reinforcing apps that both boys enjoy — their attention and focus have increased substantially. Even during therapy, the boys want to work when the iPad is involved! Both boys have been moving much quicker through their therapy programs, which means they are learning at a faster rate. The boys are more social and seem happier than ever before, which we attribute greatly to the fact that now we are able to understand what they are trying to tell us or ask for and that they get many of the things they commonly ask for, such as tickles or playing chase.

The ability to individualize the app allows it to be used exactly as needed by each owner. As an Autism Services Senior Therapist, I have encouraged countless families to invest in their children by focusing on communication. One of the ways that I do this is by promoting the iPad and the ProLoQuo2Go app. Experience has shown me that children pick up how to use the device and app very quickly. The iPad can be used as a communication device, an academic and social skill builder, a visual schedule, a reinforcer, and so much more! It is by far the best tool that I have come across to give individuals with autism a voice.

Advocates worried about changes to autism diagnosis criteria

by Beth Finke

A recent article in the Detroit Free Press quotes Dr. Patricia Wright, our National Director of Autism Services here at Easter Seals. The article covered the proposed changes to the criteria for diagnosing autism and the concerns around shrinking eligibility to receive services. It explains that a committee appointed by the American Psychiatric Association has recommended defining several levels of autism as a single new category called autism spectrum disorder:

The new guidelines would require clearer assessment of a person’s overall developmental status, including social communication and other cognitive and motor behaviors.

But some worry that the new standards would mean those with the least severe forms of autism may no longer fall within the newly defined spectrum. Those with Asperger’s disorder, for example, have deficits in social skills but not thinking and reasoning abilities. Because some are higher functioning, advocates worry they may no longer fit the criteria.

Dr. Wright points out that those of us who advocate for people with disabilities push for broader definitions of conditions to ensure that everybody who needs services can access them. “But our society has a need for labels,” she says. “And we use it to decide who can and cannot access services.”

The article also quotes Dr. Walter Kaufmann, the director of the Center for Genetic Disorders of Cognition and Behavior at Kennedy Krieger Institute in Baltimore. Kaufmann helped develop the proposed new guidelines and sees them as a potential help. “Rather than cutting off services for some, the changes might better define where patients fit along the wide autism spectrum and whether their main problem is in social interaction. And that would mean more targeted, more effective interventions,” he said.

Guess we’ll have to wait until the guidelines are implemented to see the true impact on services.

More on apps and autism

by Bob Glowacki

When I read a story about apps and autism on the BBC News website I thought it would make a great discussion on our autism blog. At Easter Seals Southeast Wisconsin we have grown our autism services and added a few iPads to begin tapping this technology. I asked our staff what they are seeing and recommending with the children we serve. Today’s guest post is written by senior therapist Melissa Born. In my next post I’ll introduce another senior therapist at Easter Seals Southeast Wisconsin who explains how her own two sons, both who have autism, use iPad apps to help them communicate.

App gives individuals with autism a voice

by Melissa Born

A very popular augmentative communication app called Proloquo2Go is being purchased by assistive technology specialists, occupational therapists, speech language pathologists, behaviorists, special education teachers, and other professionals and parents to help meet the communicative needs of children and adults who are unable to communicate verbally.

AssistiveWare first released Proloquo2Go in April of 2009, and it can be purchased on iTunes and is fully compatible for easy use with the iPad, iPod Touch, and iPhone. This remarkable App helps children and adults who are unable to speak to express themselves through text-to-speech voice, and can be modified and individualized in many different ways to meet the dynamic needs of different users.

Proloquo2Go comes with a very large default vocabulary, almost 8,000 up-to-date symbols, and the capability to immediately import photos on the spot and incorporate them into the user’s word/picture library. The app can be modified in numerous ways, such as voice (age, gender, volume, pitch, rate, dialect, etc.), symbol size, and number of symbols appearing on the screen at once.

Proloquo2Go allows its users various options to communicate through the iPad’s touch screen. A user may select symbols, words, symbols paired with words, or even letters on a QWERTY keyboard.

When Proloquo2Go is purchased and loaded onto an iPad, it comes with a large library, organized into different categories. However, at any point, the application can easily be programmed and tailored to meet the needs of each individual user. You can change initial settings by deleting, adding, cutting, and pasting words/pictures.

An individual can use a symbol from the default symbol library, take a picture with the iPad/iPod Touch/iPhone to use, or even find a picture on the internet (such as a place in the community that the individual might go) to use in Proloquo2Go.

Previously, a person unable to communicate verbally may have carried around a relatively bulky and expensive dedicated device in order to meet their communication needs. But now, a simple augmentative communication app is available to purchase and load onto the convenient and lightweight iPad device … a device that can also hold many other reinforcing and/or educational apps that appeal to individuals with autism.

More on proposed change in autism diagnosis

by Lisa Tate

I read the post Patricia Wright published here (titled Autism services should be based on need, not diagnosis) with great interest. The revisions proposed to theDiagnostic and Statistical Manual of Mental Disorders (DSM-5) will be part of the first major revision to this manual in 17 years, and an expert panel appointed by the American Psychiatric Association is assessing the impact of a narrowed definition of Autism Spectrum Disorder.

The New York Times article Patricia mentioned in her post described the proposed narrowing of the definition of Autism — it would consolidate the current definition of Autism Spectrum Disorder, eliminating Asperger syndrome and P.D.D.-N.O.S. from the manual.

Many of us working in social services have already experienced the impact of narrowed eligibility for services. Here at Easter Seals Central Texas, we have already experienced a 25% drop from last year in the number of children enrolled in our Early Childhood Intervention program. We attribute this to the narrowing of eligibility criteria in Texas that already began in September. Eliminating services for children early on like this will surely leave many children with continued needs as they enter the public education system — where the cost for providing services increases significantly.

Criteria proposed for the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders are posted on the DSM-5 web site and will be open for additional public comment this spring. Final publication of DSM-5 is planned for May 2013.

Eat ice cream — it’s good for you!

by Beth Finke

Snowy weather isn’t the only winter tradition up and down the East Coast — so is Friendly’s Cones for Kids! This is Friendly’s 31st annual Cones for Kids and the campaign has raised more than $27 million for Easter Seals since 1981.

Several Easter Seals clients and their families visited Friendly’s headquarters in Wilbraham, Mass., last week to kick off the campaign. Kelli Mead told her family’s story during the festivities. Her son, Carter, is a true early intervention (EI) success story! Born with a condition called tretramelia, Carter is missing bones throughout his body which resulted in anomalies on all four limbs.

Because of the EI services Carter received, he now has an equal chance to learn, grow and achieve his dreams just like his peers. Today Carter is a thriving five year-old boy. He is strong, happy and fearless.

Now through Valentine’s Day, you can support Easter Seals Camp Friendly’s programs for kids with autism and other disabilities every time you visit a Friendly’s Restaurant. Not only will you help kids like Carter, but you’ll be rewarded with a sheet of Valentine Cards! The Valentine Cards can be redeemed at Friendly’s for 5 free Kids Cones through March 14, 2012.

Funds raised in Friendly’s Cones for Kids program support Easter Seals Camp Friendly’s in nearly 30 different locations. Camp Friendly’s provides an opportunity for kids with autism and other disabilities to be included in regular camp activities like boating, swimming, archery, ropes courses, horseback riding, hiking and fishing.

So put down the shovels, turn off the snow blower and go ahead and enjoy some ice cream at a Friendly’s restaurant near you. You’ll not only enjoy a tasty treat, but you’ll feel good about supporting essential disability camp programs in your community. Sweet!

Autism services should be based on need, not diagnosis

by Patricia Wright

An expert panel appointed by the American Psychiatric Association is completing work on the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and the proposed change in the autism diagnostic criteria has been getting a lot of attention. The New York Times discussed the potential effect of the upcoming change, MSNBC produced a piece about it, and Nancy Snyderman, one of my favorite medical media professionals, discussed this issue on the Today Show recently. Clearly this is a big deal in the autism community.

The big deal to those of us at Easter Seals is that individuals with autism receive the supports and services they need to lead a high quality life. In all the media hullabaloo, the discussion about the diagnostic changes are paired with the message that these changes could/would limit access to services. I may be a dreamer, but wouldn’t it be great if individuals received services based upon need instead of a diagnosis?

Even with the current diagnostic labeling strategy, we hear too many reports of individuals with autism not being able to access services — an individual with Asperger Syndrome who didn’t qualify for services as their IQ score is too high … individuals with autism who perform too independently on activities of daily living to qualify for services … that sort of thing. These are people who are not able to find work or engage in education or make friends or find housing because of the nature of their disability — but still, they don’t qualify for services early on?

So, I agree that policies that decrease access to needed services do not assist individuals with autism to become contributing members of our society. But there is a bigger question to be asked than why these changes are being proposed to the diagnostic criteria. The bigger question is this: why hasn’t our society made the decision to support the members of our community who need assistance?