The law’s on our side: happy anniversary, ADA

by Beth Finke

My guess is that when President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law 20 years ago, people with autism weren’t on his mind. But thanks to the way the law was written, and how it has been interpreted, people with autism are benefitting just like people who use wheelchairs or people like me, who are blind.

The ADA is landmark federal legislation designed to improve access to services and employment opportunities to the 50 million Americans living with disabilities. It was intended to eliminate illegal discrimination and level the playing field for those of us who have disabilities, and an op-ed piece I wrote for yesterday’s Chicago Tribune describes how ADA legislation can, at times, be used to do just that: make things fair.

The essay is about a young woman who was fired from her job when her boss realized she has a visual impairment. Jocelyn Snower took her case to the Equal Employment opportunities Commission, and last month a federal judge here in Chicago entered a consent decree requiring her employer to pay Jocelyn $100,000. From my Tribune piece:

As for me, I started losing my eyesight in 1984, when I was 25 years old. At first I didn’t use a white cane or a guide dog. I quit driving or riding my bike, but I could still see well enough to walk to work. Most of my day was spent counseling college students on study abroad options; I could have done that with my eyes closed.

As my eyesight got worse, though, I started making mistakes in the office. I still remember spilling grounds all over the floor on my way to make the morning coffee. I had to sit close to my computer screen to see the words. I ran into tabletops. At one point my boss took me aside and told me I wouldn’t be going to the annual convention with my colleagues. “You’ll embarrass the office,” she said.

Months later, my contract was terminated.

The Americans with Disabilities Act was passed five years after I lost my job. I am totally blind now, and I use speech software to write for magazines, newspapers and public radio. I’ve had two books published, and I teach a weekly memoir-writing class at the Chicago Cultural Center, sponsored by Mayor Daley’s Commission on Aging. Twice a week my Seeing Eye dog, Hanni, leads me to the Willis Tower, where I moderate this blog about autism for Easter Seals.

It’s true we have a long, long way to go before hiring practices are totally fair to those of us who can’t see, or use wheelchairs, or have autism. But things are moving in the right direction. And thanks to the wisdom and determination of all the many, many people who banded together to get the ADA passed 20 years ago, we have the law on our side.

Meet Daniel: a true Texas Star

by Jennifer Friesen

Easter Seals North Texas has been quite busy this year. Ever since we merged with the DFW Center for Autism last January we’ve been able to serve even more children with disabilities in our community.

One of our new programs is the Texas Star Academy (TSA) in Grapevine, a full-day preschool for both typically developing children and children diagnosed with an Autism Spectrum Disorder. TSA is a replication of the Walden model at Emory University. It provides services within a highly structured and supportive environment, targeting skills that are typically difficult for children with autism: communication, socialization, and appropriate engagement throughout the day. Children in the preschool receive services within an Applied Behavior Analysis (ABA) construct and have the opportunity to interact with neuro-typical peers since it is an inclusive setting.

One child that has benefited from services offered at TSA is Daniel. He began attending the ABA program in the summer of 2007 showing severe deficits in social interaction, communication, and play skills. With a well-tuned behavior intervention program and a lot of dedicated intervention by his parents, Daniel learned to communicate very effectively, made several friends, and blossomed in all areas in the years that followed.

Daniel graduated from the program in 2009 and last year attended a regular kindergarten program in a local public school with no additional assistance in the classroom required. He returned just for the summer this year alongside some of the friends he made at Texas Star Academy as a typical peer for our students needing ABA support.

Daniel’s brother attends also as a typically developing student in the program and the two boys are very popular with all of the children. Daniel and his family are truly giving back by sharing his amazing friendship skills and love with all of us here at Texas Star Academy, and TSA has been a wonderful complement to the other programs here at Easter Seals North Texas, including the Autism Treatment Program, Outpatient Rehabilitation Program, and our Respite Care Services.

Staff turnover rate at group homes

by Beth Finke

Our 23-year-old son lives in a group home. Gus is healthy and well taken care of. His life doesn’t change much, and stability is good for him. And for us, too.

When friends ask how Gus is doing, I give them my pat answer, tell them he’s fine. Really, the only thing we can imagine changing in Gus’ life from here on out is the staff at his group home. Working at a group home is such hard work, usually the turnover is high. “So at least there’s one good thing about the recession,” I say. “There aren’t many other jobs available, so for a long time now no one on staff has quit.”

Funny, the things we say sometimes without really knowing they’re true. I mean, I know the staff at the group home hasn’t turned over much the past two years. But is the turnover rate genearlly high in group homes? Or has that just been our experience where Gus lives?

Turns out hard statistics on this are difficult to come by. From a web site called SparkAction:

Though little studied and rarely acknowledged publicly, high staff turnover plagues the entire children and youth out-of-home care industry — and much of the developmental services field as well. The reasons vary from locale to locale, but experts in the field say the primary ones are: low pay, long hours, absence of career ladders and lack of pre-service and in-service training and skills to deal with sometimes difficult young people.

An article I found in the Salem Statesman Journal said the staff turnover rates in Oregon group homes average about 85 percent a year.

Studies in other states have found annual turnover rates ranging from 57 percent to more than 100 percent.

Unfortunately, the story did not quote a source for those numbers. The most definitive study I could find comes from Cheryl A. Larson, the co-author of a book called Staff Recruitment, Retention, & Training Strategies For Community Human Services Organizations. Larson’s dissertation looked at turnover in small group home settings and revealed an annual turnover rate of almost 50%. The SparkAction web site quotes Dr. Larson:

“Even more challenging, of direct support workers who left during the previous 12 months, 41 percent had left before finishing six months on the job, and another 25 percent left before finishing 12 months on the job,” she said.

So I guess it’s not just Gus’ group home that had always experienced a high turnover rate. I wonder, though, if the recession is having the same effect on other group homes that it seems to be having where Gus lives. Whatever the reason, we are grateful for the hardworking an dedicated staff there. A Godsend.

Not always the teacher, at times the student

by Bob Glowacki

I am pleased to introduce Damaris Williams as a guest blogger. Damaris is an Assistant at our Kenosha Adult Day Center, and will share his experiences supporting adults who have disabilities.

“Not always the teacher, at times the student”
by Damaris Williams

Every day at the Kenosha Adult Day Center is unique, and every individual is unique. Most days are full of fun, laughter, and joy. Other days may be more of a struggle. You have to be creative and come up with ways to make something fun, or to try and get them to laugh.

You need to be patient and understanding of how each person may be feeling or what challenges they may be facing. The techniques that I try to use one day in certain situations may not work the next day. I find that while I’m trying to figure out who they are and what I can do to make their experiences the best they can be, they are trying to figure out ways they can communicate their needs to me.

My goal is to build strong relationships and trust with each person. I have found that whether they are verbal or nonverbal my approach is always the same: I am always friendly and smiling. I speak with an inviting tone and I always offer choices so that they can make their own decisions.

One participant in particular is nonverbal and her primary way of communicating is through sign language. I started working at the Kenosha Adult Day Service Program in May of 2010 and I didn’t know any sign language, which created a communication barrier for us. However, after two months of working with her, she has taught me several signs and other ways to communicate with her, such as reading, writing, and gesturing. Since I have been working at Easter Seals I have learned that I am not always going to be the teacher, but at times the student.

Easters Seals Adult Day Service Program allows individuals to socialize and express themselves creatively. Because the program is located in the Kenosha YMCA it also provides individuals with community interactions and ample ways to be active. While the participants are here with us, their families and caregivers have an opportunity to care for themselves. This program allows both participants and caregivers the opportunity to enjoy and make the most out of each day.

Lemonade stand raises money for (and inspires!) Easter Seals Crossroads

by Scott Fogo

An 8-year-old girl from Greenfield, IN put up a lemonade stand to sell drinks during her family garage sale last month and raised hundreds of dollars to donate to our Easter Seals Crossroads Autism Resource Center. Anna Scott’s goal is $2,000, and she’s already raised about $1,400 at the garage sale stand.

A story about Anna Scott’s philanthropy aired on WTHR-13 News.

The fourth grader plans to split the money between Easter Seals Crossroads Autism Resource Center and her uncle recently diagnosed with stage four lung cancer.

The news story says Anna got her inspiration from a book called Lemonade for Sale by Stuart J. Murphy. In the book, children decide to sell lemonade to make money to fix their clubhouse and keep a bar graph to track their sales.

More from the TV news story:

One of her best customers didn’t even get to quench his thirst.

“He didn’t buy any lemonade and handed me a $50 bill and said, ‘Use this for your cause’ and then left,” said Anna.

The entire staff at Easter Seals Crossroads was humbled by the generosity of this young lady. She worked hard and gave from her heart because she became close friends with a young lady with autism. Her kindness helps us all remember why were doing the work we do! Thanks Anna!

Thanks for your Friendly-ness

by Beth Finke

Remember my Friendly’s blog post back in February? The one where I asked you to put down your shovels and head over to Friendly’s before it started snowing again?!

Support Easter Seals Camp Friendly’s programs for kids at any Friendly’s Restaurant and be rewarded with a sheet of Valentine Cards. The Valentine Cards can be redeemed at Friendly’s for 5 free Kids Cones and $5 off any $25 purchase.

Well, five months and 100 degrees later, I’m here to thank you for your generosity during that very harsh winter season — Friendly Ice Cream Corporation recently announced that its company-wide Cones for Kids campaign raised nearly $750,000 for Easter Seals Camp Friendly’s! Funds raised through Friendly’s successful 2010 Cones for Kids campaign help kids with autism and other disabilities enjoy a total of 30 Easter Seals Camp Friendly’s programs and 3 camperships. Easter Seals Camp Friendly’s makes it possible for kids with autism and other disabilities to participate in regular camp activities like boating, canoeing, swimming, archery, ropes courses, horseback riding, hiking, basketball and fishing.

Friendly’s is celebrating its 75th anniversary this month as well as marking the 29th year of supporting Easter Seals through Cones for Kids. Happy anniversary, Friendly’s! And happy anniversary, Cones for Kids!

Employing people with autism — are we there yet?

by Beth Finke

An article called Hiring Employees with Autism (subscription only) in the June issue of Society for Human Resource Management’s HR Magazine mentioned Easter Seals and our corporate partner CVS Caremark.

Easter Seals national director of autism services Patricia Wright is quoted in the article, explaining how popular culture and wider diagnostic tools have led to an increased awareness of autism. In terms of hiring people who have autism, Dr. Wright said, “despite the Americans with Disabilities Act, we’re not quite there yet.” She pointed out that even when a person with a disability has the same qualifications as someone without a disability, it can be more difficult for the one with a disability to get the job.

The one consistent message Easter Seals hears from families — after the initial apprehension and anxiety of learning their child has autism – is an overwhelming concern about the life-long supports their child with autism may need to be independent. Our Living with Autism Study results revealed that parents raising children with autism are very concerned about the future independence of their children. In fact, they’re far more concerned than parents of typically developing children — nearly 80 percent say they’re extremely or very concerned about their children’s independence as an adult, compared to only 32 percent of other parents. This is especially true when it comes to their financial independence, quality of life, social and inter-personal connections, and employment and housing opportunities.

Easter Seals is using the study results to raise awareness of and advocate for the life-long services millions of families living with autism desperately need — including school-to-work transitions, employment support, residential and community support, and financial planning.

We’ve also taken action to address this need through participation in Advancing Futures for Adults with Autism (AFAA). AFAA is a national consortium seeking to create meaningful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. This unique national consortium has united to set national priorities for adults on the autism spectrum and to transform public policy and programming for teens and adults with autism spectrum disorders.

In January, AAFA held a think tank. Nationally recognized experts in a variety of fields (e.g., individuals with autism, program operators, university professors, public policy authorities and specialists from both the public and private sectors) met to begin addressing the issue of autism and adulthood. The summary report from that think tank is available at the AFAA web site.

Few challenges are easy, and as Patricia said, we certainly have a long way to go. But to end on a positive note check out these stories of hope — six of them are about adults with autism.

Bike therapy helps build self esteem

by Beth Finke

Seems like each summer around this time, we hear another story about how a bike therapy program called Lose the Training Wheels is helping people who have autism or other disabilities gain confidence and self esteem.

In 2008 we published a post here about the bike therapy program at Easter Seals DuPage and the Fox Valley Region, and last year Scott Fogo wrote about the Lose The Training Wheels camp at Easter Seals Crossroads.

This year, its Easter Seals Southwestern Indiana’s turn. An article in the Evansville Courier & Press describes their bike camp like this:

This annual program serves youngsters who otherwise might never ride a bicycle. They learn to ride modified bikes and graduate to standard bikes. They gain an immediate boost in confidence and a potential lifetime of rewarding rides.

The Lose the Training Wheels program in Evansville started Tuesday, July 5 and will roll for five days at the National Guard Armory at 3300 Division Street. The program is a joy to behold.

Autism voice on the National Council on Disability … confirmed!

by Patricia Wright

I came home from China to some good news: on June 20th, the U.S. Senate unanimously confirmed Ari Ne’eman to serve on the National Council on Disability (NCD) alongside President Obama’s seven other nominees.

Founder and President of the Autistic Self-Advocacy Network (ASAN), Ne’eman is the first person with autism to serve on the NCD. The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism, and Ne’eman is a good fit for the council.

You might recall from my post last March that his appointment had provoked a bit of controversy. His confirmation has been eagerly anticipated by the self-advocacy community since his nomination last December, and I join them in congratulating Ari and all the new members of NCD for their appointments to such an important post.

Adults with autism are behind the success of Harry’s Buttons

by Wendy Murphy

When Harry Engnell Jr. graduated from high school in 1998, his parents found few supports available to help a young person with autism find work and make other transitions to adulthood.

Harry’s dad knew his son liked repetitive tasks, So he bought him equipment to start making buttons as a hobby. Harry Jr. loved making buttons, and so did many of his friends with autism. And thus, a business was born. From the HarrysButtons.com Web site:

Our buttons are “hand-made” primarily by people with Autism at Easter Seals Metropolitan Chicago Adult Vocational Programs.

Together we make beautiful 1 1/4″, 2 1/4″ and 3″ round buttons for any occasion, campaign, or promotion. Tell us what you’re looking for and we will custom make it for you, with pride.

Easter Seals micro-enterprise coordinator Kelly Anne Ohde oversees HarrysButtons.com and can’t say enough about what Harry’s parents did to make this all happen for their son. “When they couldn’t find work that suited him, they created a solution,” Kelly says. “Now that solution is changing many lives.”

Learn more by visiting HarrysButtons.com.

Read Wendy Murphy’s biography.