Road trip: Milwaukee or bust

by Rachel Talen

I love my job at Easter Seals headquarters office in Chicago. The one thing we can miss out on at headquarters, though — unlike the thousands of affiliate staff across the country — is daily interaction with the families we serve. After all, that’s truly what we’re all about.

So when we got the chance to work with WGN-TV in Chicago to develop a few segments and a public service announcement about our client families, services, and Walk With Me signature event — we jumped on it and literally hit the road. One hundred miles north to Milwaukee, to be exact: we went to the Walk With Me event put on by Easter Seals Southeast Wisconsin!

WGN-TV shot some awesome footage of the event with the beautiful scenery of Lake Michigan in the background, and the best part was catching up with Easter Seals 2011 Child Representative Kyle Mayer. Kyle and his family were all clad in neon green Walk shirts — Way to represent Easter Seals!

And did I mention all of this happened in the middle of Milwaukee’s Polish fest? What a fun, out-of–the-office day for us headquarters staffers!

My go-to site for autism resources? The CDC

by Patricia Wright

I’m afraid a lot of people think of the Centers for Disease Control and Prevention (CDC) as a place that monitors infectious disease, or sometimes maybe gets involved when a plague is looming on the horizon. I have some sense of this from my time working for the Department of Health in Hawaii. When I was asked, “where do you work?” and answered, “the Department of Health,” people would launch into something about their water quality or a restaurant that was in need of a cleanliness citation. As my area of expertise is limited to autism I didn’t have a lot to contribute to these conversations!

The CDC perhaps suffers from this same lack of awareness. The CDC and particularly the National Center for Birth Defects and Developmental Disabilities at the CDC is a phenomenal resource for families and professionals. One of my go-to sources for quality materials on early childhood development there is an awareness campaign entitled “Learn the Signs. Act Early”. The list of resources at the Learn the Signs. Act Early page includes information for parents, early care and education professionals and healthcare providers.

The autism prevalence data that has been reported for several years (most recent prevalence 1 in 88) is also a product of the CDC. Easter Seals utilizes this data frequently to advocate and raise awareness about the need for services and supports for this growing prevalence.

CDC also recently developed a resource for physicians-in-training. The site describes Autism Case Training as a developmental-behavioral pediatrics curriculum “designed to educate future healthcare providers on fundamental components of identifying, diagnosing, and managing autism spectrum disorders through real life scenarios.”

There is a lot more to be found related to autism at the CDC. There are so many websites and resources related to autism. The great thing about the CDC is that I know that these materials have been vetted and that the quality is guaranteed.

One remarkable woman!

by Rachel Talen

We often see Easter Seals in the news, but it’s not every day one of our own staffers snags a full-page color ad in the Chicago Tribune!

To encourage people to find out more about the Chicago Tribune Charities “$100 Million Celebration” campaign, they are featuring Antonette Hernandez and her remarkable story of overcoming adversity brought on by addiction. From the full page ad :

“I can’t describe the pain of trying to do better and being unable to,” says Antonette, looking back at those wasted years. “I did a lot of things I wasn’t proud of, including not raising my children.”

But her family didn’t give up on Antonette. And Antonette decided to stop giving up on herself.

The story describes Antonette’s decision to take part in Inspiration Corporation’s four-week employment preparation training program.

“It was a very, very cold winter and I remember taking the bus and I would always have a little frost bite from waiting. But I remember telling myself I can do this,” says Antonette.

Once she graduated, Antonette found a job here at Easter Seals Headquarters as Administrative Assistant for the Senior Community Service Employment Program. She’s paying it forward by empowering low-income older workers and helping them target and achieve personal employment goals. Antonette also serves on the Board of Directors for Inspiration Corporation, one of the nonprofits funded by the Tribune Charities and the organization where she received employment services support that eventually led to her position here. Again from the story :

There, she strives to provide insights and help to those in need, and keep them from avoiding her mistakes.

Antonette is also part of her children’s lives again. She now believes in herself. And she takes comfort in knowing her family believes in her, too.

You can read the entire story about Antonette on the web or watch it on YouTube. I love how her story comes full circle: someone helped Antonette when she was in need and now she is able to be that source of hope for others. She is truly an inspiration to us all!

Volunteering is part of our “work” here at Easter Seals

by Patricia Wright

Easter Seals recently launched a program called Outside In. Outside In will give Easter Seals employees one week “on-the-clock” (paid time) to volunteer for another non-profit organization.

Easter Seals knows the value of volunteers and supports volunteerism among its employees. Volunteers are vital to our own operation, and this awareness of the value of volunteerism is what launched the Outside In program. Our employees can engage in meaningful work and gather knowledge and awareness from the outside and then bring that experience back in to our work here.

I used my Outside In hours to provide consultation and training on the topic of autism to individuals with autism, healthcare providers, educators and parents in the town of Suide in Shaanxi, China with the non-governmental organization The Five Project.

This trip was a little different than other trips I’ve taken to China. We traveled to an area where no formal autism programs are currently available. There are approximately 100,000 people living in the city of Suide. We worked with an active parent support group — with no educational programs available parents are keen to learn about autism to support their children. We covered topics like communication, behavior and social skills and did some lectures, too. Of course the most fun was spending time with children, putting the concepts we talked about into practice.

I have worked with the Five Project before and appreciate how the Outside In program afforded me some additional time to volunteer and support their mission. The Five Project is increasing the capacity of autism and other disability organizations in China to provide effective intervention services.

As always, it was a huge privilege to be welcomed into a community so eager for information and willing to share their culture and life experiences with an outsider. This was my fourth working trip to China, and will hopefully not be my last!

Breaking records at the Paralympics track and field trials

by Beth Finke

I really enjoyed the post Sara Croft (Social Media and Events Coordinator at Easter Seals Crossroads) wrote for their disability services blog after attending the U.S. Paralympics track and field trials in Indianapolis last weekend.

Temperatures have soared into the hundreds here in the Midwest, but Sara reported that didn’t stop these athletes from participating. She wrote that “athletes from around the globe visited the Michael A. Carroll Track and Soccer Stadium on IUPUI’s campus to compete in the Track and Field trials in hopes of getting that plane ticket to London,” and said many of the athletes were participating in multiple events. “Short distance racers were part of the 100m, 200m and 400m while long distance racers competed in the 800m, 1500m and 5000m races.” Four world records and 14 American records were broken on the first day of this year’s trials.

Sara and her friends recorded interviews and races from the trials, and you can view their amazing video on their U.S. Paralympics Track and Field Trials playlist on YouTube. Thanks so much for this insider’s look at the trials, Sara, and … go Team USA!

My Child’s Story: a great resource for communicating with your child’s health care providers

by Patricia Wright

Communication with your child’s healthcare provider is pivotal for ensuring your child receives optimum care. This is particularly important for children with disabilities.

Many parents report that communication about their children with special healthcare needs — and obtaining care for them — can be challenging. My Child’s Story is a new resource developed by the Centers for Disease Control and Prevention (CDC). The tool is described as a “resume of sorts, a printed form you can leave with the doctor that explains who your child is within the family and outlines his or her medical history.” The site shows you a great example, and here’s what they say to include when building Your Child’s Story:

When you’re ready to create your own child’s story, remember to include this information:

• name and birth date;
• social history, including other family members and pets and where your child goes to school;
• birth record;
• medical history including any hospitalizations, contact information for all doctors, medications currently taking, allergies and reaction to any materials; and
• information about who your child is, including his or her hobbies and favorite things.

The CDC recommends you add a photo to the file and then make copies of your child’s story to share with everyone who has a hand in their medical care.

Quality healthcare is important to a quality life. Having a resource like My Child’s Story may assist your healthcare providers in getting to know your child, help them build a relationship with your family, and promote better health outcomes for your child.

Health care decision a big win

by Beth Finke

Katy Neas, senior vice president of government relations here at Easter Seals, was one of the disability advocates quoted in a story in Disability Scoop about last week’s Supreme Court decision to uphold sweeping changes to America’s health care system. From the article:

Meanwhile, leaders from a host of national organizations representing individuals with developmental disabilities praised the decision.

“People with disabilities and their families have their lives dictated by the status of their health insurance,” said Katy Neas, senior vice president of government relations at Easter Seals. “The Supreme Court’s ruling today tells these 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.”

The article goes on to spell out provisions of the health care reform law that are especially significant for people with disabilities, then quotes Jonathan Young (chair of the National Council on Disability) and Marty Ford, (director of public policy at The Arc) hailing the U.S. Supreme Court’s decision to uphold sweeping changes to the nation’s health care system as a victory for people with disabilities. Nearly all of the Affordable Care Act was ruled constitutional last Thursday, which means additional provisions of the 2010 law can take effect between now and 2014.

Do blind people walk more than the average person? Let’s find out!

by Beth Finke

Without being able to drive, I’ve always thought that blind people who use guide dogs — especially those of us who live in big cities — must walk more than the average person does. Now I have a chance to prove it!

Easter Seals Headquarters started a six-week “Walk For U, Go The Extra Mile” challenge last Monday as part of its wellness program. Every employee received a free pedometer to keep track of their progress for six weeks, and those of us who meet the daily goal of 7,000 steps per day — a distance of 3.5 miles — throughout the entire six weeks will be entered into a drawing to win a six-month fitness club membership.

The human resources department here realized I wouldn’t be able to read the number of steps I’d taken each day on my own, so they ordered a special talking pedometer for me — it says my results out loud. And so, I’m on my way to prove my theory.

To apply to train with a Seeing Eye dog, you must be “capable of walking one to two miles a day.” Those of us who live in cities with our guide dogs can’t simply open a sliding glass patio door to let our dogs out. I take my Seeing Eye dog Whitney down the street, around the corner and to her favorite tree at least four times a day. That’s 1,000 steps per trip. And for the rest of the day, well, running errands in a city is like using one big treadmill. My talking pedometer counted out 12,157 steps the day I walked to Walgreens to pick up prescriptions, and that included a safety shortcut I took each way to cross State Street. Rather than deal with traffic, Whitney and I go down the subway stairs on one side, traverse under State Street, then come up the stairs on the other side. The way I look at it, every el station is a StairMaster.

This is only the first week, but thanks to my talking pedometer, I’m up to the challenge. I plan to keep you posted on my results as we go along — stay tuned!

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!