Notes from the Hill

I’ve been doing public policy for more than 20 years, and I’ve seen a lot of issues rise and fall. The issues surrounding the needs of children and adults with disabilities keep rising to the top. I’m hopeful that we as a society will do something meaningful to help these families.

As Director of Congressional Relations for Easter Seals, I see a lot of similarities between how people with mental retardation were treated 30 years ago and how people with autism are treated today. Back then, people with developmental disabilities were considered too disruptive … incapable of holding down a job or living in their community. I’m hopeful that it won’t take us 30 years to change the way society feels about people with autism.

We have a good shot at getting funding for the Combating Autism Act. The CAA would fund activities that help people with autism live with equality, dignity, and independence. Congress is now beginning to decide on its funding and will make a final decision this summer. And the Expanding the Promise for Individuals with Autism Act is a bill that seeks to increase the supply of services for children and adults living with autism

I’ve been working to try to get groups that advocate for other types of people with disabilities to support autism-specific bills. So far, so good.

You can help too … ask your legislators to fund the Combating Autism Act and to support the Expanding the Promise for Individuals with Autism Act.

Read Katy Beh Neas’ bio


How do we define “appropriate” education?

Under the Individuals with Disabilities Education Act (IDEA), students with disabilities have a right to a free, appropriate, public education. But how do we define what’s appropriate for each child that enters a school system and is in need of services?

Ideally, an Individualized Educational Program team collaborates to define what that individualized education should entail for each child. But collaboration doesn’t always result in agreement. Parents and the school system may not be able to come to an agreement and litigation may result.

Yesterday’s Supreme Court ruling is a demonstration of how far parents are willing to go to secure what they perceive as an appropriate education for their child. Mr. and Ms. Winkelman felt that their son with autism needed to attend a specialized school for children with autism. The school district disagreed and litigation began.

The Winkelmans couldn’t afford an attorney, so Ms. Winkelman fought for the right to represent herself and her son in federal court –- how many of us would feel that passionate about a topic … to be willing to act as your own attorney in federal court! Ms. Winkelman was that passionate about securing what she felt was an appropriate education for her child.

For more information on special education law, and advocacy for children with disabilities, visit Wright’s Law.


Watching Maurice at work

Last Friday night I attended an Easter Seals event where our 2007 adult representative Maurice Snell played a prominent role — as presenter of an award to one of our leading corporate partners, Safeway.

Maurice stood at the podium in front of hundreds of people and was in complete control — of himself and especially the crowd. While his part was scripted and on a teleprompter, he ad-libbed like a pro, even cracking a joke about how much more handsome he was behind the podium than on the televised image on the big screens in the room.

Knowing that most people are very frightened at the thought of public speaking, especially with glaring lights and television cameras, I could not stop thinking about what a remarkable and wonderful thing it was, watching this young man with autism literally control the crowd with his mastery and his personality.

Maurice’s performance also reinforced the power of early diagnosis and treatment. More and more, we need to work together to find ways to increase the availability of early diagnosis and early intervention. The results, as demonstrated by Maurice’s performance, are indisputable.


Maurice and former adult representative Chad Cunningham

Maurice and his family tell their own story. Take a look for yourself. I hope that we can get video of his performance last week up on the web for you to see. You’ll be incredibly impressed … as I was!


A great Celebration of Giving!

I really enjoyed myself at the Easter Seals Celebration of Giving event a few days ago! Every year Easter Seals honors its corporate partners at this event. This year we gathered in Las Vegas.

I was fortunate to meet many people, especially former youth and adult representatives such as Marti Clark, Palmer Harston, Matty Gaughan, Ryan Odens, Chrissy and Elizabeth in honor of the late Lindsey Connelly, and my colleague and former adult representative, Chad Cunningham.

Chad Cunningham and Marti Clark dancing

Chad and Marti cutting a rug at the welcoming reception

It also gives me great joy to run into Tori and Becky Boyles once again. This convention and my life wouldn’t have been complete without them. Overall it’s a great Celebration of Giving event. I thank all of the companies for their contribution to the Easter Seals organization.

The event ended with a great evening of entertainment and humor from Jim Williams and Elgin Manhard, along with the other representatives in the awards ceremony. I absolutely loved the theme of this year’s Celebration of Giving … Oscars night!

Jim Williams carries Oscar onstage

Easter Seals President Jim Williams brings the next “award” to the podium

I was fortunate to present the final award of the evening to Larree Renda, from Safeway, for her contributions and dedication toward Easter Seals. She is a very nice lady and wants nothing back in return; that was also the case of our other award recipients that evening.

Larree Renda receives award for Safeway

Me with Jim Williams, Larree Renda and Elgin Manhard.

So, I would like to thank Jim Williams, Elgin Manhard and the other representatives for making me and Tori feel welcome at this prestigious event. We really enjoyed ourselves and met wonderful people from many different organizations. I encourage the people from these organizations to continue giving 100% to Easter Seals. There will always be hope provided from these organizations who lend a helping hand to those who are in need. That’s what we want in this world today, everyone helping out those in need, for a good cause. We must not give up hope — never.


Clearly, frankly, unabashedly disabled

Working in occupational therapy and rehabilitation, I’ve seen many people overcome challenges that are different from my own. This New York Times article is an interesting read about the concept of being “differently abled.” Whether a person has autism, cerebral palsy, depression or is a person with a different ethnic or religious background — they are a person first. A person with feelings, intellect, desires and goals.

Who’s to say at what point a person is disabled and not just doing things differently?

Read Ellen Harrington-Kane’s biography.


How do special moms celebrate Mother’s Day?

Mother’s Day can be a mixed blessing for a woman who has a child with a disability. For years after my son was born, I begged my husband not to get me a gift for Mother’s Day. “I’m not your mother!” I told him.

I knew my son wouldn’t be making me a card. He wouldn’t be presenting me with dandelions picked especially for me. My son has severe mental and physical disabilities — he doesn’t understand what Mother’s Day is.

I was determined not to let any of that bother me though. I knew I was a good mother, and I knew my son loved me in his own special way.

And then one year — my son must have been 5 or 6 — I burst into tears on Mother’s Day. “I’ll never get to celebrate like all the other mothers do!” I wailed. My poor husband didn’t know what to do.

This article on parental grief and adjustment to a child with disabilities reassures me I am not alone when it comes to feeling a bit of sadness on Mother’s Day. It lists Mother’s Day as one of the “common occasions of stress for families of a child with a disability.”

Ever since that outburst of mine, we’ve gone out of our way to celebrate Mother’s Day. This year we started early. Last weekend I needed new clothes. My husband came along on a shopping spree. When I couldn’t decide between two outfits, he whispered, “get them both.” He said our son wanted me to have new clothes for Mother’s Day. I wore one of the new outfits last night. We went out for a special dinner. I’m making up for lost time — instead of Mother’s Day, I now celebrate Mother’s Week!

And for the real Mother’s Day we’re heading to Wisconsin to visit our grown son in his group home. We’re proud of him. I’m proud to be his mom and happy to celebrate as a family.

I’d love to hear how other special moms have come to terms with Mother’s Day and how other families with special children celebrate each year — I’m always open to new ideas.


Training Conference wrap-up

Hello, to everyone! Last week was interesting. I was not at my current place of employment, which is Easter Seals Therapeutic Day School. I was attending a conference by, wouldn’t you know, Easter Seals, Inc.

The first day I had to admit was entertaining to me. I knew I had to deliver a speech to all of the Easter Seals affiliates, but I didn’t know I would carry a life-sized cutout of myself on the stage. First, I asked myself, “Who is more handsome, me or this piece of cardboard, who is an imitation of me?” The audience (consisting of the people from various Easter Seals affiliates) loved the cutout of me, but they loved me even better in person. Overall, the presentation was the one people will never forget during their time in Chicago.

The third and final day was pretty good. First, I went to a couple of sessions at the hotel, to prepare my mind. Those sessions in the morning were interesting and I got something from both these seminars: always prepare yourself. That is what I ask you to do to be successful in life.

What I got out of this week at the Easter Seals Training Conference was to always look forward to new things in life. That is what I aim to do as long as I’m a representative for Easter Seals, Inc.

Beth Finke and Maurice Snell

Maurice Snell with Easter Seals and Autism blog moderator Beth Finke at the Easter Seals Training Conference


Live from the Palmer House

Hello everyone! I am blogging from the annual Easter Seals Training Conference. This year it’s at the Palmer House Hilton, a legendary old Chicago hotel — Frank Sinatra used to hang out here during visits. Easter Seals staff from around the United States and Canada and Ability First Australia are the ones hanging out here this week, though.

Well, we’re doing more than just hanging out — we’re participating in training sessions and sharing ideas. I am meeting Easter Seals colleagues who provide services and support in their communities. It’s great to have them here in Chicago.

A lot of the scheduled sessions center on autism. In fact, when President and Chief Executive Officer Jim Williams gave his welcome speech this morning, he talked a lot about autism and the services Easter Seals provides to individuals with autism and their families. He also mentioned our ambitious Vision 2010 goal to annually serve five million people with disabilities or special needs.

Nearly 400 people are at this conference — a big group. Everyone here is interested in learning the latest on autism and finding out the newest and best ways to continue serving clients and their families. In the hallways you hear people sharing stories and asking questions. Two well-attended sessions this afternoon focused on autism. It’s very encouraging to be around so many people so sincerely interested in services for people with autism!


Blogging by ear

Hello, I’m Beth Finke, Easter Seals’ Interactive Community Coordinator. I’m thrilled to be hearing from you all. What that fancy “Interactive Community Coordinator” title means is that I’m the one moderating this new autism blog at Easter Seals. I’ll be reading through blog comments on a daily basis and forwarding your comments to Easter Seals blog authors and information and referral staff. We want you all to feel comfortable sharing information and interacting with one another — that way this online community will thrive.

I should tell you — I have firsthand experience with disabilities. I am blind and use assistive technology. A computer program called JAWS reads the text on my screen out loud. That’s how I’m able to read your comments to the blog. I also have a grown son who has developmental and mental disabilities of his own. What that all means is I am familiar with — and have an inherent interest in — the services and feelings you all are writing about when it comes to dealing with disabilities. You are not alone.

If you have any questions about my role as blog moderator or our community guidelines, don’t hesitate to ask. And keep your comments, questions and recommendations coming!

Read Beth Finke’s biography.


Shared space on the ‘L’

My professional life of working with people with disabilities brings me joy every day. And, seeing people with disabilities out and about and living their daily lives in our shared community brings an instant smile to my face.

Living in Chicago, I get to ride the ‘L’ train to/from work everyday. Accessible transportation is a huge issue in the world of disability rights. I get to see people with visible disabilities almost daily on my train. When I see people with disabilities on public transportation, I think that the work I do may be producing results. They -– like me -– are on their way to work, going to a friend’s house or heading downtown for a film -– living life.

Sometimes I get to see a person who is exhibiting some of the characteristics of autism.

Last week I entered the train and took a seat behind a young man who was grinning ear to ear. Most of us have a bit of a scowl, so this in itself was pleasant. As soon as the train took off he began to slowly rock to the motion of the train, and his smile widened.

The world of the ‘L’ is basically each person stays in their space and operates in their own universe. This young man clearly knew the rules. He rocked in his own space and never swayed out of his personal bubble zone.

Did people take notice? Maybe.

Did they see his big smile and experience some shared joy. Hopefully.

Is he a person with autism? I will never know.

But sharing space with someone who experiences that much pleasure from a simple train ride reminded me that everyone has something to contribute to brighten our world.