A star is born

by Allison Knopp

I am pleased to introduce Theresa Forthofer, the President and CEO here at Easter Seals DuPage and the Fox Valley Region, as a guest blogger today.

My 15 minutes of fame

by Theresa Forthofer

Last week I had the honor and pleasure of making a guest appearance on NBC 5 Chicago to discuss development milestones in young children and Make the First Five Count. I was thrilled to be able to share this important information, but believe me, I was nervous!

They expected us at the studio at 6:00 a.m., and I am not a morning person — ask my husband! We were escorted in, and while we waited until our segment started we could watch the broadcast on a TV in the waiting area. Kristen Barnfield (the Assistant Vice President of Public Relations at Easter Seals Headquarters), Allison Knopp (Public Relations & Marketing Associate at Easter Seals DuPage and the Fox Valley Region) and I were so excited to see anchorman Stefan Holt and meteorologist Andy Avalos wearing our snappy Make the First Five Count bow ties. We would each let out a little cheer each time one of them motioned toward their neck!

Allison could not get off her phone making sure everyone in the Twittersphere knew that our message was being aired. She was busy interacting with the anchors as well: Daniella Guzman even tweeted a photo of Stefan at the desk with his tie on!

After I got my microphone on I was led back to the studio to meet Stefan and Daniella. They were so personable and seemed to truly care about getting our information out to the public. They made me feel so welcome and as comfortable as I could feel, considering it was my first time on live TV.

During the three-minute segment I was able to educate parents regarding the signs they should look for in their children to detect a developmental delay. We discussed looking for unusual characteristics in the child’s communication, thinking and reasoning, senses, emotions or the way they move. I informed parents that whether or not they have concerns, everyone should take our Ages and Stages Questionnaire because more than a million children enter kindergarten not prepared to keep up with their peers. It was also mentioned that our new Autism Diagnostic Clinic is a great way for parents to get answers if they are concerned that their child may have autism or another developmental delay.

Overall, it was a fantastic experience, and once I started breathing, I actually had fun! I am so happy to have been able to act as a spokesperson for such an important campaign. Thanks, NBC 5!

Helping seniors and people with disabilities get around town

by Beth Finke

My Seeing Eye dog Whitney and I value the importance of public transportation, and with that in mind I am happy to introduce Lucinda Shannon, MPA, the Training and Technical Assistance Specialist for the National Center on Senior Transportation, as a guest blogger today.

Supporting people who need assistance with transportation

by Lucinda Shannon, MPA

Transportation for people with disabilities and older adults is a priority for Easter Seals. In addition to the variety of transportation services provided by many of our affiliate offices, Easter Seals’ Transportation Group administers two federally-funded training and technical assistance centers to support people who need assistance with transportation.

The National Center on Senior Transportation (NCST) works to improve and increase transportation services for older adults, and Easter Seals Project Action (ESPA) collaborates with the disability community, transportation providers and human service providers to improve transportation options for people with disabilities.

Both training and technical assistance centers are funded through a cooperative agreement with the U.S. Department of Transportation, Federal Transit Administration, and they both focus on providing services in the following areas:

• Training online or in-person, where individuals can learn how to strengthen accessible transportation within their own community
• Outreach that includes resources and publications available on a variety of topics (things like accessible transportation, customer service, ADA regulations, and livable communities) plus staff presentations and participation at conferences, and staff participation on advisory committees
• Technical assistance activities through a toll-free hotline that allows customers to connect with us Monday-Friday from 9:00am-5:00pm ET
• Research on various key topics that helps fill research gaps, and helps staff develop useful materials by engaging with scholars and partner organizations to increase greater understanding of issues and best practices associated with accessible transportation across various modes, both public and private.

You can visit the NCST website to learn more about senior transportation, and ESPA’s website to learn about transportation for people with disabilities. Browse both sites for publications and resources, and while you’re there, check our calendars for upcoming training events and online courses. If you have questions, you can reach ESPA at 800-659-6428 and NCST at 866-528-6278.

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!