Helping older adults and people with disabilities get going

by Beth Finke

I am happy to have Lucinda Shannon, MPA, the Information Specialist for Easter Seals Project ACTION, return to us with another great guest blog post today.

Learn about our “Get Going!” guide

by Lucinda Shannon, MPA

Last month NorthJersey.com. published a story about our GET Going! Guide, which helps adults with autism deal with unexpected interruptions in their travel routines.

Mary Leary, vice president, Business Innovation and Easter Seals Transportation Group, was featured in the article along with Linda Walder Fiddle, founder and executive director of The Daniel Jordan Fiddle Foundation. The two of them worked with their teams to develop the pocket-troubleshooting guide after Fiddle heard a young man with autism speak last year at a conference on transportation for people with disabilities.

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. 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.

Handicap This!

by Beth Finke

A guy named Tim Wambach left a message on the Easter Seals Facebook page a few weeks ago inviting us to come up with a guest post for the Handicap This blog.

Handicap what?! I’d never heard of the blog before and had to check them out before agreeing to write anything for them. Here’s what I found out: Mike Berkson has cerebral palsy, and he met Tim Wambach when Wambach became his aide in seventh grade. The two became devoted friends after that. Mike is in his twenties now, and Handicap This is a stage show that details their history together.

The Handicap This web site describes the show as “a provocative look at friendship, breaking down barriers, and living with handicaps — most of all about everyone’s potential.” A quick read of their events page with the help of my talking computer showed that Tim and Mike had performed plenty of gigs in the Chicago area last year, and after reading all this, of course I agreed to write up a little something for them. You can read my guest post on the Handicap This blog — they published it last Friday, and it’s all about how losing my sight has left me opting for live theatre over movies. I’m going to keep my eye (okay, my ear) on their schedule and hope to be able to attend one of their live shows in 2013.

Thankful for the parachute, but aware there’s still work to do

by Jennifer Dexter

Easter Seals is pleased the president and Congress have come to an agreement to avoid going over the “fiscal cliff,” averting devastating across-the-board cuts to federal programs and many of the scheduled tax increases. This agreement begins the path to addressing our nation’s fiscal issues without negatively affecting people with disabilities and their families.

Additionally, it’s important the bill minimizes the impact people who take itemized deductions for charitable contributions and continues the critical Medicare therapy cap exceptions process.

While disappointed the bill repeals the Community-Living Assistance Services and Supports (CLASS) Act, the new long-term services and supports commission appears to be a serious attempt to address the issue of access to long-term services and supports for people with disabilities and older adults.

As the across-the-board cuts are only postponed until March, there is still much work to do. These automatic budget cuts will affect almost all federal programs serving people with disabilities. The consequences to children and adults with disabilities and their families are significant if the sequester is allowed to go forward:

• Fewer infants with cerebral palsy will have access to speech or physical therapy.
• Fewer teachers will be trained to meet the special needs of students with autism.
• Fewer high school students with disabilities will get the resources to get a job or go to college.
• Fewer people with disabilities will get employment supports.
• Fewer children with autism will get essential health services.
• Fewer veterans will get needed supports like job training and employment services.

These programs provide vital — even life-saving — services to millions of kids, adults and families living with disabilities. Moreover, they are wise investments — leading people from lives of dependence to lives of independence.

Easter Seals is committed to working with our nation’s leaders to avoid devastating cuts to such important programs while still being fiscally responsible.

Feeling good about my December birthday

by Rachel Talen

I’m a December baby. Those of you with birthdays around the holidays will be able to empathize: birthday presents wrapped in Christmas paper, friends who care more about ringing in the New Year than watching you blow out your candles, people forgetting your birthday altogether. One year even my parents forgot my birthday!

Back in September, The Avril Lavigne Foundation celebrated Avril’s birthday by creating a Rockstar Room for her fans and encouraging them to donate to her cause. I was so inspired by this idea that I decided to do something a little different for my birthday this year as well.

Ann Curry posted an inspiring status update on Facebook after the tragedy at Sandy Hook Elementary School in December, and that’s when I got the idea. Rather than wishing me a happy birthday on my Facebook wall, I challenged my friends to do a random act of kindness and post that on my wall instead. They came up with great stuff.

One friend paid for the car behind her at the Starbucks drive thru and another donated pet beds and food to the shelter where she’d adopted her dog. One friend stopped to talk to a homeless man he sees on his way home every day and gave him a Christmas card, and someone else paid for a woman’s leg brace while at a doctor’s office because her insurance wouldn’t cover it.

I am so proud of my friends, and as a “gift” to myself I made a donation to one of my favorite charities. It feels good to give, especially when the gifts are the type that keep on giving, like these do. Thanks to everyone who rememberred my December birthday in such a special way this year!

Time names autism treatment one of 2012’s top medical breakthroughs

by Patricia Wright

Easter Seals’ mission is to provide services and supports to individuals with autism and other disabilities so that they can live, learn work and play. One of the services we provide is the Early Start Denver Model (ESDM). ESDM is a comprehensive treatment intervention delivered by highly trained professionals for young children with autism. The outcomes for ESDM have been quite good. Many children who have received ESDM intervention have significant improvement in their adaptive behavior, IQ and autism diagnosis.

Time magazine has taken notice of the ESDM and named it one of the Top 10 Medical Breakthroughs for 2012. I still find it amazing when an autism treatment receives attention from a mainstream publication. I am particularly pleased that this focus addresses autism treatment that results in meaningful outcomes.

Sadly, many young children with autism cannot access quality intervention like the ESDM. Many barriers exist to accessing effective treatment: finding trained therapists, paying for therapy, finding time every day to engage in the intensive therapy and so on. Perhaps raising awareness via media channels like Time magazine will raise awareness about meeting the needs of children with autism.

Thanks to my autism heroes!

by Patricia Wright

I am celebrating my 30th professional year of providing services and supports to individuals with autism, and when I reflect on the past three decades I realize that one of the things that motivates me most to stay engaged promoting autism services and supports is listening to stories from the experts in the field: individuals with autism and their families.

I learn best when working right in the same room with individuals with autism, but when I’m home alone writing or working on research, or when I can’t be out in the field, I feel fortunate to have a great book on my shelf I can pull out for inspiration, too. Autism Heroes contains 38 phenomenal family stories about living with autism. One of the stories is written by the famous actor Joe Mantegna, and he and the other 37 authors all write with a tenor of encouragement to the reader. The book is organized into four sections:

• Dignity
• Hope
• Opportunity
• Love

The essays are honest and insightful, providing a pure view into the life experiences of these families who live with autism. The book contains incredible photographs, too, and the pictures provide readers with a wonderful visual connection to the essays.

Reading the essays of the 38 families willing to share their stories in Autism Heroes provides inspiration for my continued work in the field. Seeing the smiles in the photos and reading the anecdotes — funny at times, heart-breaking at others — reinforces my commitment and understanding that working with individuals with autism is a privilege.

Last-minute gift ideas for special kids come in handy

by Beth Finke

Christmas is this Tuesday already? Yikes! If you’re having trouble coming up with an idea for a special gift for a special kid, don’t despair. Once again this year, Toys “R” Us has published its free toy-selection guide for parents and friends of children with disabilities. The Toy Guide for Differently-Abled Kids features items that promote the development of specific skills, such as auditory, language, visual, fine motor, thinking and social skills.

Our son Gus is 26 years old now and living with three other guys in a group home in Wisconsin. While most of the gifts in the Differently-Abled Toy Guide are not age appropriate, we were still able to find a perfect gift in the catalog for him this year.

Gus misses hearing our voices sometimes, so we got him a recordable Christmas book. The recordable book allows my husband and me to read and record a Christmas poem out loud to him. This way when Gus turns a page, he’ll hear us reading. Now all Mike and I have to do is sit down and make the recording.

Did I say that Christmas is Tuesday already? Yikes!

Aloha, Senator Daniel Inouye

by Katy Beh Neas

We at Easter Seals are joining the nation this week in mourning the passing of United States Sen. Daniel Inouye (D-Hawaii). Inouye long championed the cause of justice and equality for all Americans, including people living with disabilities and other special needs.

Inouye lost an arm in World War II combat, and he paid special attention to the needs of military service members, veterans and wounded warriors. In 2011, Easter Seals affiliates Serving Maryland, Virginia and Washington, DC honored Sen. Inouye with its Advocacy Award, and in his very poignant acceptance speech during that awards dinner Senator Inouye humanized how difficult the experience is for military families when their loved ones leave for combat and they are separated.

As Chairman of the Senate Appropriations Committee, Senator Inouye directed our nation’s resources to investments in children and adults with disabilities and their families. In his 53 years in Congress representing Hawaii, he contributed to the passage of major legislation that ensures people with disabilities can live, learn, work and play in their communities, including the Americans with Disabilities Act of 1990, the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act of 1975, the Fair Housing Amendments Act of 1988 and countless other civil rights laws for people with disabilities.

Thank you for a life of service, Senator Inouye. You will be deeply missed.

She’s still a special sibling!

by Beth Finke

Reading Rachel Talen’s post about the Siblings Study Easter Seals released earlier this month made me think about my young friend Carly Gaither. Carly Gaither’s little brother Scott has autism, and he was the Easter Seals National Child Representative in 2008.

I interviewed Carly for an article back then and found out her class was reading Rules, an award-winning fictional children’s book by Cynthia Lord that looks at autism from an older sister’s perspective. “My language arts teacher told me we’re reading it because of Scottie,” she beamed. “And because of me, too!”

When I interviewed Carly for the story, she admitted that growing up with a brother who has autism is not always easy. Other kids made fun of her little brother sometimes. She described one time when Scott approached her group of friends and wanted to play with them. “We were playing something he probably wouldn’t want to play, and we told him that,” she said. “He started whining, and crying, and yelling really loud.” A group of teenagers hanging out nearby pointed and laughed at Scott. “It’s sort of embarrassing, but then it’s really sad, because they don’t know what’s going on with him. They just think he’s an eight-year-old baby.”

Carly had been through this before. Many times. She knew what to do. “I ignored them and pretend they didn’t do anything wrong,” she shrugged. “I just, like, forgot about ‘em.” Carly told me back then that reading Rules helped her realize she was not alone, and now, thanks to the generous support of MassMutual Financial Group, Easter Seals’ Siblings Study shows she won’t be alone as she enters adulthood with a sibling who has a disability, either.

Carly is 17 years old now and a senior at Hardaway High School. She is on the swim team and in chorus, and she participates in a dual enrollment program at their local technical college for a certification as a nurse aid. Adult siblings who care for their sibling with a disability who responded to our study said their sibling has had a positive impact on their quality of life — helping them develop patience, understanding, compassion and providing perspective — and from what Carly’s mother Barbara reports, the same goes for Carly’s relationship with Scott. Barbara told me that since Carly got her driver’s license, she frequently picks her little brother up from school. “They squabble like many siblings do,” Barbara said. “But she is still protective of him, and she has learned so much about compassion and tolerance from being his big sister.”

Milwaukee Family success stories!

by Bob Glowacki

Remember the guest post our Autism Services Coordinator Nicole Berlowski wrote about Kai, a client here at Easter Seals Southeast Wisconsin who was able to reach his developmental milestones through early intervention services ? Well, he and Scott — a client who found work thanks to our job services here — were both featured in a recent article in Milwaukee Family magazine.

The article highlighted the Applied Behavior Analysis and autism services we offer here at Easter Seals Southeast Wisconsin. It included information about Make the First Five Count and the Ages and Stages Questionnaire, too, and stressed the importance of early intervention services:

Both Scott’s and Kai’s stories show the importance of early screening, identification and intervention. It can make all the difference in the world for some individuals and their families.

Susan Russell, the vice president of Community Engagement here at Easter Seals Southeast Wisconsin, was quoted in the article, too. She said, “We are literally involved from a person’s first steps in life to their last.” I couldn’t agree with her more.