A happy day — what the Supreme Court’s ruling means to people with disabilities

by Katy Beh Neas

Wow — this is a really happy day!

Everyday, we advocate for access to appropriate and high quality health care services for everyone we serve. And with this morning’s Supreme Court ruling on the Affordable Care Act (ACA), the Court ensures the continuation of the law’s policies that protect access to private health insurance for children with pre-existing conditions and young adult dependent children up to the age of 26, bar lifetime health insurance caps, and leaves in place the essential policies that will take effect in 2014.

Simply put, the ACA is critical to millions of families living with disabilities. The Court’s ruling today tells our families they can make decisions about what is best for them as a family, and not be controlled by fear of losing health insurance coverage.

Over the course of the past several weeks, I’ve been up at night worrying about the impact of this decision on our clients. Someone said this morning, “prior to the ACA, all of us were all one car accident away from bankruptcy, or a life of poverty and dependence.” No one knows that better than Ben Trockman. Here’s what Ben has to say:

Health insurance is absolutely one of the most important things in my life since my injury. Without having health insurance, I would not have been able to attend many different places around the country, from the Shephard Center in Atlanta and Kennedy Krieger in Baltimore to Easter Seals here in Evansville, where I learned more about my injury and the way life would change.

We learned, basically, how life is different with an injury such as mine, and how to deal with things on a day-to-day basis. We worked with different types of therapy, getting used to my wheelchair, knowing how to treat my body and how dangerous pressure sores were. We gained knowledge about so many important things that would have never been possible because of the extreme expenses, without health insurance. I figured out how much my body could do physically. I spent 3 months doing very intensive therapy, 5 hours a day. I learned so much about the way to treat my body with exercise and how important it was.

And now, I look around my room, all the important things that make life a little easier … my wheelchair, my alternating air pressure mattress on my bed, the lift above my bed that helps move me to and from … NONE of that would have been affordable without health insurance.

Or, for Caroline Long, a sweet 11-year-old girl, whose fun personality comes through despite her inability to speak. She’s a fifth grader from Alabama, who loves school and outings with her family. Caroline has Rett syndrome. Generally considered a severe form of autism, it especially affects expressive language and hand use.

When it comes to health insurance, her mom Drew Ann Long believes:

It would be devastating to lose, it’s that critical. It helps provide Caroline with a quality of life that would be compromised. Having a child with multiple medical needs, never knowing what is around the next corner, I simply cannot imagine not having health insurance. I love having the freedom to choose the doctors I want. Health insurance provides a level of “freedom” from worry, to some degree. Every aspect of Caroline’s existence, and our family’s, is dependent upon health insurance.

The ACA is changing the lives of millions of people living with disabilities. Families no longer have to worry about the financial consequences of not having insurance because the ACA ensures children with pre-existing conditions cannot be dropped from private health insurance. Similarly, individuals with chronic health conditions don’t have to worry about losing coverage if they need care that exceeds their insurance company’s lifetime cap. In 2014, adults with disabilities who have pre-existing conditions will soon be able to buy health insurance that meets their needs. The ACA also provides guidance to states to increase the availability of home and community-based services so people with disabilities can access needed care in settings other than nursing homes.

We just learned that the House of Representatives has scheduled a vote to repeal the Affordable Care Act for the week of July 9, 2012. Watch this blog for more information about how you can share your views on this important topic.

Woo Hoo!

A graduate we’re proud of!

by Bob Glowacki

Nicole Berlowski is the Autism Services Coordinator here at Easter Seals Southeast Wisconsin, and her guest post today highlights some of the amazing work she does with our clients.

A grad we’re proud of

by Nicole Berlowski, MS

This week we celebrated a graduation for one of our Applied Behavior Analysis (ABA) participants. I’m so proud of all of the progress that he has made in the past two years and couldn’t resist sharing this amazing success story.

Kai was adopted from an orphanage in China at 28 months. When his parents brought him home they quickly learned that he could not walk, speak, or interact with others. In May of 2010 Kai saw a nationally known specialist in Virginia and his parents were told that their 4-year-old son may never be verbal and would need long term care. He began services with Easter Seals in September of 2010.

After 9 months of intensive ABA-based intervention services (30 hours every week), Kai went from 10 requests to over 75, and from communicating by pointing to using complete sentences. He had less frequent negative behaviors and more interactions with family and peers. He began to enjoy age-appropriate activities and after a total of 21 months he learned to have age-appropriate conversations, too — including using eye contact and directing his attention toward the person he is speaking with.

These days Kai enjoys playing different games like Trouble, Sorry, Connect 4, and Chinese checkers. He enjoys time around his family and peers at school. He wants to be involved in what is going on around him. He has also become advanced in his academic skills (spelling, counting, naming numbers, reading, and writing).

Kai is no longer in need of special education services, and due to his quick advancement of skills, he no longer qualifies for the criteria for autism waiver funding. We will miss Kai, but are so proud of him for graduating from Easter Seals services and happy to see him looking forward to the summer with his family and friends. Congratulations to all!

Senate committee moves key funding bill

by Jennifer Dexter

A major part of my job at Easter Seals is working with Congress to assure that funding for federal programs supporting people with disabilities remains strong. As you can imagine, the last few years working on this issue have been intense as our nation’s fiscal pressures have increased. So, when a little bit of good news broke last week, I thought I would take to the blog to tell you about it.

Last week the Senate Committee on Appropriations approved the fiscal year 2013 Labor, Health and Human Services, Education, and Related Agencies bill. The measure is heading to the full Senate for its consideration.

I am pleased to report that overall, programs serving people with disabilities fared well. Some could even receive small increases — notably: early intervention (+$20 million). Other programs slated for increases include special education (+$100 million), Head Start (+$70 million), child care (+$160 million) and Lifespan Respite (+2.5 million).

I know that the several thousand messages that Easter Seals supporters sent to Congress helped make this happen. The House has not yet crafted its bill (and final action on this legislation is not expected before the fall) but this is a great first step.

While we have a hard road ahead, and this is likely to be the high-water mark, we need to call attention to good things when they happen. A big thank you to all of you that weighed in with Congress and asked them to support these programs. I would also like to thank the Senators, particularly Chairman Tom Harkin (D-Iowa), who crafted this bill and showed that we can work within tight budget controls without harming people with disabilities. There is much more to come in this process, so please visit our Web site regularly to follow the progress.

Award-winning books teach kids about disabilities

by Beth Finke

It happens every year. On the second weekend in June, the little neighborhood I call home here in Chicago is overtaken by over 100,000 bookworms.

My neighborhood is called Printers Row. A long time ago it was Chicago’s “bookmaking hub,” and every summer it celebrates that history by hosting the largest free outdoor literary event in the Midwest.

Spending a weekend surrounded by books and authors and bookworms reminded me of something I’ve neglected to do here on the blog: let readers know about the Schneider Family Book Award winners this year!

Every year the American Library Association gives the Schneider Family Book Award to authors and/or illustrators who have excelled with their “artistic expression of the disability experience for child and adolescent audiences.” From a press release about this year’s winners:

For the category of books for children age 9-13 the jury chose two winners listed alphabetically by author:
“Close to Famous” written by Joan Bauer and published by Viking, a division of Penguin Young Readers Group.

Twelve-year-old Foster dreams of growing up to become a famous celebrity chef despite her reading disability. Can the quirky townsfolk of tiny Culpepper help Foster succeed?

“Wonderstruck: A Novel in Words and Pictures,” written by Brian Selznick and published by Scholastic Press, an imprint of Scholastic.

Rose and Ben are deaf children living 50 years and worlds apart, yet both marvel and connect with the world around them. The American Museum of Natural History links their separate stories – one narrated in text, the other through cinematic illustrations.

For the category of books for children age 14–18 the jury chose “The Running Dream,” written by Wendelin Van Draanen and published by Alfred A. Knopf, an imprint of Random House Children’s Books, a division of Random House, Inc.

When sixteen-year-old track star Jessica loses her leg in an accident, she is devastated believing she will never run again. Rehabilitation forces Jessica to confront disabilities and rethink her physical limitations.

Confession: I haven’t read any of these books. Not yet, anyway. But The Running Dream sounds particularly interesting. Being around all these bookworms for an entire weekend was contagious. I caught the bug! Time to download the audio version and start listening.

We can rock a BowTie … can you?

by Rachel Talen

We’re celebrating Father’s Day and helping kids with disabilities … by wearing BowTies! Easter Seals is partnering with BowTie Cause, an organization launched in 2010 to challenge others to rock a BowTie for a cause that they believe in. They’ve made us a special Make the First Five Count BowTie, and we’re asking Easter Seals supporters to wear one today, Friday, June 15th, for BowTie Friday.

We’ve sent out hundreds of BowTies to TV anchors, so watch for them. Your local meteorologist could be rockin’ one for Make the First Five Count! If you love our style, you can order your very own Make the First Five Count BowTie online.

This has been one of the most interesting and quite possibly in the top ten coolest projects I’ve worked on. BowTies are stylish! I think they’re a great conversation piece and a very creative way to raise awareness. Here are ways you can help:

• Wear your Make the First Five Count BowTie to spread awareness about the importance of early identification and early intervention services for kids with disabilities,
• Encourage all dads, moms, grandparents and caregivers to visit MaketheFirstFiveCount.org for a free, online developmental screening to track their child’s progress and development,
• Tweet your BowTie picture to @Easter_Seals and use #MFFC.

If you do plan on tweeting, use these other important handles, too: @DhaniJones, @BowTieCause, @Ken_Rosenthal and @BowTieCEO.

Why? Because early identification and services are key for every kid’s success. Every year, more than one million children with unidentified disabilities and developmental delays enter school with learning and health issues that have a lasting, negative effect on their ability to meet their full potential.

Healthy, happy kids ready to enter school on par with their peers and set to learn — what better Father’s Day gift is there?

Maps may help special kids enjoy the ride

by Rachel Talen

A colleague here at Easter Seals Headquarters came across a post called Maps written by mommy blogger Jessica on her Courage & Coffee blog. I thought it was too cute not to share.

But what do maps have to do with Easter Seals? Turns out Jessica’s son Ethan has autism. He used to get anxious on the 35-minute drive to their local Easter Seals’ summer preschool. She noticed Ethan loved video games and TV shows like Dora the Explorer, where the characters used maps. And so, Jessica created a picture map for Ethan so he could follow along and watch for landmarks — the grocery store, restaurants, and a bridge along the way, with Easter Seals as the final destination. Now longer car rides are fun for both Jessica and Ethan.

You might also want to read about Ethan’s diagnosis on the Courage and Coffee blog. It really helped me picture what trying to get help for a child with autism might actually be like — and I’m sure these were only a few of the hurdles Jessica and her family faced. Their story is another real-life example of why our Make the First Five Count program and other programs here at Easter Seals that raise awareness around early intervention services are so important!

Assisting each other … with assistive technology

by Scott Fogo

I am pleased to introduce Sara Croft, our Social Media and Events Coordinator here at Easter Seals Crossroads, as a guest blogger today.

Comcast increases access to assistive technology

by Sara Croft

The last time you attended a class, seminar, workshop or conference, did you learn by having conversations with fellow participants, asking questions and forging relationships that continued beyond the training?

People who are learning to use assistive technologies for work, school or independent living are often taught by an instructor one-on-one and don’t have the benefit of establishing peer-relationships with others who use the same types of assistive technology. The Comcast Foundation recognizes this need and has awarded the Assistive Technology Center at Easter Seals Crossroads a $35,000 grant to design POLLCAT, the Pilot Online Learning Community for Assistive Technology.

This project is designed as a pilot program to explore various on-line teaching methods that are accessible and allow for peer-to-peer interaction. The anticipated result is an accessible system that will be appropriate for training users of assistive technology, regardless of their physical location. POLLCAT will have the overall effect of increasing access to assistive technology training and peer-support while reducing the need for assistive technology trainers and specialists to travel to provide services. If you have questions or would like to know more about POLLCAT or assistive technology, feel free to contact Wade Wingler, our Director of Assistive Technology, at wwingler(at)eastersealscrossroads(dot)org.

First sign of summer? Cookies!

by Beth Finke

Your calendar says the first official day of summer isn’t until June 20, but the first sign of summer always comes early here at Easter Seals with the launch of Sweet Tomatoes’ annual cookie campaign.

This year, Sweet Tomatoes restaurants in Colorado, Illinois, Georgia, Kansas, Missouri, North Carolina, Oregon, Utah, Washington, and Phoenix, Arizona, are participating in the fundraiser.

From now until the end of June, select Sweet Tomatoes restaurants will donate $1 to Easter Seals for each bag of homemade chocolate chip cookies sold. And that’s not all — restaurant guests will also receive a coupon for a future visit as a thank you for their cookie purchase.

Sweet Tomatoes has supported Easter Seals for six years and has raised nearly $145,000 in support of Easter Seals families. Donations collected from the campaign support Easter Seals programs for children and adults with disabilities.

So just think: you can go ahead and indulge in a bag of homemade cookies without feeling guilty! Each and every time you and your family visit a Sweet Tomatoes in June, you can help support essential Easter Seals programs in your community!

These wristbands might be able to predict seizures

by Patricia Wright

There are some great researchers looking at technology and how it can be used to benefit those living with autism. Matt Goodwin is one of them, and I had the opportunity to hear him speak at the Autism New Jersey conference last year.

Dr. Goodwin’s name popped up recently after he and his colleague Dr. Rosalind Picard delivered a presentation for KiDA’s Innovation Series. KiDA stands for Kids Institute for Development & Advancement, and it is a center for treatment of Children with autism in Orange County.

Their presentation was titled Advances in Personalized Technology for Autism, Emotion, Sleep and Seizures and it highlighted a new technology: “wireless wristbands whose sensors measure the electricity being conducted through the skin to determine the state of the sympathetic nervous system, which controls the fight-or-flight response in humans.” It’s true these wristbands were able to assess emotional stress and arousal, but there was another benefit: the wristbands showed signs of being able to predict seizures.

Many individuals with autism have seizures, and being able to predict them would certainly be a bonus.

Technology makes everybody’s life easier. It is great to hear that technology is improving the lives of people with autism too.

Crafting a Better World

by Rachel Talen

You know how much I love crafting from my April blog post, when I talked about A.C. Moore’s register donation program and Make n’ Take crafting event. Well, the event was a huge hit! A.C. Moore educated thousands of customers about autism and the importance of early intervention.

Yesterday, my colleagues Sara and Katy joined Pepe Piperno, president and owner of A.C. Moore with Robin Beam, Jacquie Panto and the top 10 fundraising stores at the A.C. Moore store in Deptford, New Jersey, for this year’s check presentation. And Easter Seals New Jersey’s CEO Brian Fitzgerald and VP Helen Drobnis were there with Easter Seals consumers as well. They loved thanking store managers and team members who made this April’s campaign a success. A.C. Moore stores — managers, employees and their customers — raised an impressive $150,000 for Easter Seals to use to deliver local services for kids with autism and other disabilities.

The most amazing part was that A.C.Moore staff are already thinking about next year and have lots of ideas brewing on how to make the campaign an even bigger success!

Since A.C. Moore launched this campaign as part of its Crafting a Better World program in 2010, customers and store team members have raised nearly $500,000 to support Easter Seals families! Thanks to A.C. Moore, we will be able to help more families and make the first five years of life count for kids with autism and other disabilities.