Spelling out the effects of the deficit reduction plan

by Katy Beh Neas

On Tuesday, August 2, President Obama signed into law debt limit and deficit reduction legislation. White House and congressional staff tell us that the many calls and letters that Easter Seals supporters sent to Congress, as well as the visit by Easter Seals clients to the White House last month, are a big part of why Medicaid was protected in the final deal.

The federal budget process is not over yet, though. Funding for programs that support people with autism and other disabilities continues to be at risk. Tell Congress: Continue to protect services and supports for people with disabilities at all stages of the deficit reduction process.

The debt ceiling deal has several steps. First, the debt ceiling deal specifically protects from cuts to Medicaid, Medicare and Social Security. The deal calls for an immediate cut of $1 to $1.2 trillion in spending spread over the next 10 years. Programs of importance to people with autism and other disabilities such as early intervention, job training and employment will be subject to these cuts. The decisions on the specific funding levels for specific programs will be made by later this fall.

Another key element of the deal is the establishment of a congressional “Super Committee,” to be made up of 12 members of Congress who will be equally from the House and Senate and from the two political parties. All parts of the federal budget spending and revenues are on the table. The committee must form a set of recommendations by November 23, 2011 and final legislation must be sent to the president by December 23, 2011.

If the Committee’s legislation is not finalized and enacted, an across-the-board cut to all federal programs would automatically go into effect. Medicare, Medicaid, Social Security and other programs serving low-income individuals are exempt from this across-the-board cut. Congress is also required to hold a vote on a balanced budget amendment.

Office of Public Affairs staff will continue to work vigilantly to assure that cuts at any stage in this process do not negatively impact people with disabilities.

Kids with disabilities more likely to be victims of bullying

by Beth Finke

A conclusion to a study reported in the latest issue of the journal Pediatrics might sound like an unfortunate “no-brainer” to those of us who have children with disabilities: being the victim of bullying is more common among elementary school students with disabilities than among children without disabilities.

The study published in Pediatrics surveyed more than 1,450 students in fourth through sixth grade. Parents were surveyed, too, and when researchers from the University of Pennsylvania, Johns Hopkins and Marshall University matched the survey responses up with school records they found that children with disabilities missed more days of school and had lower grades. These kids also reported higher levels of bullying and were less likely to feel safe in school. Students with special health care needs were less likely to report that getting good grades mattered to them.

The authors of the study wrote that these problems threaten the well-being of these kids and their future flourishing as adults.

Health and school professionals will need to work together to identify these children much earlier, ensure that they receive appropriate supports and services and monitor the effectiveness of services.

Ever since we launched our new Make the First Five Count campaign here at Easter Seals, I’ve been paying more attention to stories that emphasize the importance of early identification and supports and services for children with autism and other disabilities. Before reading this report, though, I hadn’t put it together that early identification and supports could prevent bullying.

Small town life has its advantages

by Patricia Wright

I was lucky enough to spend some time with my colleagues in Montana last week at the 8th Annual Autism Conference at Montana State University in Billings. Rural is a way of life in Montana. It’s not uncommon to hear people here saying things like, “I drove 400 miles to be here,” or “We live on a ranch.”

I used to think that children living in a rural area would not have quality services. I assumed their lives would be impacted negatively. But that was years ago, before I took a job with the Special Service Agency of Alaska.

When I was working in rural Alaska, I’d see children with autism playing after school with their cousins who lived in the village, attending school in the village alongside classmates they had grown up with since birth, fishing with their grandfather who was an elder in the village. These children may have had to take a plane in order to see a neurologist somewhere, but they were able to spend every day with an incredibly supportive community.

While at the conference in Montana last week, I heard stories similar to ones I heard in Alaska. Children with autism growing up in small towns in Montana have communities that know, love and appreciate them. The children still have challenges that result from their autism, but their local communities are much more successful in addressing those challenges: they view the child as part of the community.

My time in Montana was a reminder that rural doesn’t necessarily mean lack of quality. Being in a big city might mean that you have your choice of health care providers, but I think children living in rural communities have lots of opportunities, too.

Thanks to the Avril Lavigne Foundation!

by Jim Leiker

Great news from Easter Seals Capper Foundation! Earlier this year, Easter Seals affiliates from across the U.S. and Canada were invited to apply for an Avril Lavigne Rockstar Club at Easter Seals grant from the Avril Lavigne Foundation, and we just found out that Easter Seals Capper Foundation received one of the grants!

Avril Lavigne, a young, talented artist, actively demonstrates her passion about sharing a message of inclusion — that kids and young people with autism and other disabilities want to laugh, have fun with their friends, and just fit in — like all of us! We’ll use the grant for our ARTSTAR Camp — many families seek specialized programs like our camp for children with disabilities and their siblings or friends. Some children with autism and other disabilities require round-the-clock supervision. Our camp provides a fun morning of learning and creating for these young Rock Stars, and it also provides a brief respite for their parents.

The grants’ initiative evolved from the collaboration between Easter Seals and The Avril Lavigne Foundation originally announced in September 2010 to identify and support recreational programs for kids with disabilities and their families and communities. Thirty affiliates applied for grants to fund a program, and we are truly honored to be one of the four chosen to embody the Avril Lavigne Foundation’s R.O.C.K.S. mission: Respect, Opportunity, Choices, Knowledge, and Strength.

It’s just so exciting that Easter Seals Capper Foundation is one of the national affiliates selected to partner with Avril Lavigne, her foundation and Easter Seals — it speaks highly of our organization, Topeka, and the northeast Kansas community.

Get our free disability awareness curriculum

by Beth Finke

Yikes! Is it almost August already? Next thing you know, the kids will be back in school!

What better time to share our free disability awareness curriculum — FRIENDS WHO CARE® helps parents and elementary school educators teach kids about people with autism and other disabilities.

Our FRIENDS WHO CARE® program is a fun, interactive program that helps students learn how kids with autism and other disabilities go to school, make friends and play. The program teaches empathy, too, helping children understand what it means and how it feels to be a young person with a disability.

FRIENDS WHO CARE® is sponsored by our long-time Easter Seals partner, the Friendly Ice Cream Corporation. The program encourages kids to accept their classmates who have autism or other disabilities as people first, and to find ways to include everyone in school and after-school activities. Visit our Web site to learn more about FRIENDS WHO CARE and download the materials.

Advocating for school-aged kids with disabilities

by Beth Finke

A few weeks ago I met with another woman who is blind to have her tutor me on using my talking iPhone. I’m starting to get the hang of it now and even getting interested in all the apps available … well … at my fingertips!

Example: I just heard about a new iPhone app for parents with school-aged children who have autism or other disabilities. iAdvocate was developed by Syracuse University School of Education and is available free at the iTunes store. The app links parents to laws, websites, videos, organizations, books and articles about inclusive education.

iAdvocate also connects to the Syracuse University Parent Advocacy Center (SUPAC) website:

SUPAC provides parents of children with disabilities with information, resources, and strategies to:

• promote their meaningful involvement in their children’s education, including information regarding the special education process;
• assist in understanding their children’s disabilities;
• promote early resolution of disputes between parents and school districts;
• promote the use of resolution sessions and special education mediation;
• assist in understanding procedural due process rights; and
• enhance parents’ skills and levels of confidence to communicate effectively and work collaboratively with schools and other stakeholders to advocate and actively participate in their children’s education.

One way SUPAC provides this service is by maintaining its website, newsletter, and Listserv for parents. So hey, even if I never do figure out this talking iPhone thing I can still use my laptop to go to the SUPAC site to exchange ideas and information — think I’ll give that a try right now!

Tips for trips with more rewards than meltdowns

by Beth Finke

Do you have vacation horror stories?

Family trips or vacations are supposed to be times for families to take a break from the routine and do something different … and maybe even relax a bit. For parents of children with autism or other special needs, this can be a difficult proposition. For that reason, many families stick to “staycations.”

I was happy to discover that Easter Seals Central Texas had posted a link on their Facebook page to a Washington Post article with tips for travelling with a child with special needs:

Experts say with some careful planning and preparation, families with children of all types can enjoy hitting the road (or skies) for a trip that will yield more rewards than meltdowns.

The article quotes Chantal Sicile-Kara (founder of the Autism College and author of Autism Life Skills), and Cathy Pratt, a member of the board of directors of the Autism Society and the director of the Indiana Resource Center for Autism at the Indiana Institute on Disability and Community at Indiana University.

Give it a read!

Celebrating 90 years of building abilities in Topeka

by Jim Leiker

Last Thursday was proclaimed Easter Seals Capper Foundation Day in Kansas. And in Shawnee County. And in the City of Topeka! Although it was a typically hot, humid Kansas summer day, It was a fantastic day for Easter Seals Capper Foundation.

Many found a spot of shade to hear WIBW-TV anchor Melissa Brunner emcee the event, which featured an impressive slate of speakers:

• Governor Sam Brownback
• Representatives from Senators Pat Roberts and Jerry Moran (they presented a commemorative flag)
• Mayor Bill Bunten
• Nancy Landon Kassebaum-Baker, former Senator from Kansas
• Brandon Van Becelaere, whose brother Alex receives services here at Easter Seals Capper Foundation

Reporter Phil Anderson quoted from some of the speeches in an article on the front page of the Topeka Capital-Journal:

Kassebaum Baker, who divides her time between a home in Tennessee and a ranch in Morris County, said she recalled the work the Capper Foundation did in the late 1930s and 1940s to help young people with polio, which was “a great concern” at the time.

“Just as polio has been eradicated, we now meet new challenges,” she said. “There will always be new challenges, but it’s the dedicated people at Easter Seals Capper Foundation who meet these special needs.”

Also speaking was Brandon Van Becelaere, 11, the son of Eric and Teresa Van Becelaere and brother of 6-year-old Alex, who receives services at Capper.

Brandon said Alex was born deaf-blind but through the assistance of Capper professionals has been able to gain a limited amount of sight and hearing.

“All the teachers and therapists have been so kind,” Brandon said. “They’ll never give up on anyone.”

The legendary Santa Fe Band played both prior to and following the formal program. 580 WIBW radio broadcast the 25-minute ceremony on stage at Gage Park Amphitheater, then followed up with interviews of our 90th Anniversary partners. Our glorious day was covered in stories on WIBW-TV and KTKA-TV — what a wonderful opportunity to share how Easter Seals Capper Foundation has evolved over 90 Years and talk about the importance of early intervention for children with autism and other disabilities.

Celebrating 90 Years of Building Abilities outdoors in Topeka , KS on a very toasty day with ice cream , ice water, cool celebrities and guests was lots of fun. We are truly blessed!

An easy way to get needed services to kids

by Bob Glowacki

The first I heard of Kyle Mayer was two years ago, when I saw his name on an application for a scholarship for autism services here at Easter Seals Southeast Wisconsin. He and his family needed help, and we awarded them a scholarship to develop new skills for Kyle and discover new ways to interact with him.

Today, Kyle’s Mom, his sisters and Kyle are all National Ambassadors for Easter Seals. The same Kyle that could not sit still for five minutes can now sit for an hour or more to have pictures taken with friends and supporters of Easter Seals. Kyle never used to play with his sister Julia. Now at photo shoots Julia thanks people who get their photos taken with Kyle. “Thank you for helping my brother,” she says.

Ella was born prematurely in 2008, weighing in at only 3.5 pounds. She was born with a bowel obstruction that led to serious complications, and spent 18 months in the hospital before she finally came home. Easter Seals was there, her mom said. “There was always someone there in my house every day, helping me with her medical needs, strengthening her fine and gross motor skills …”

Ella turns 3 this year. She has developed skills, and her feeding tube maybe removed soon! Her Mom says, “She is where she is today because of all the help she received from Easter Seals.”

All our affiliates have these stories to tell, and we’re all strapped to continue our work effectively as states continue to make drastic cuts to services. With thousands of children touched by our services, what a relief it is to know that we can help raise tens of thousands of dollars to help with just one push of a button.

Here’s how you can give one minute of your time to help thousands of kids like Kyle and Ella. Northwestern Mutual Foundation is donating a total of $200,000 to three charities. The participating charities are Easter Seals, Teach for America and Action for Healthy Kids. Voting is easy, and every vote for Easter Seals is worth $10 for our charity.

In order to vote, you must have an active Facebook page, and then:

• Log on to Facebook.
• Like Northwestern Mutual Life.
• Click the “Click for Kids” link on the left side of the page and then click on the Easter Seals button.
• Spread the word!

Nearly 2,000 people have already supported this effort, raising over $19,000. There is still over $125,000 available to support services to kids like Kyle and Ella, so if you have a minute, please go to Facebook and support the cause. You are only eligible to vote once and voting ends August15, 2011.

What?! You’re not one of the 500 million people on Facebook? No problem — just forward this blog to others you know who are on Facebook. Tell them to support Easter Seals because you believe every child deserves the best start in life!

12-year-old with autism, visual impairment, is off to college

by Beth Finke

I know firsthand how difficult it can be to take college courses without being able to see. But imagine being visually impaired and having autism, too! That’s what life is like for Alex Beach, who is headed to North Georgia College and State University this fall.

Oh, and did I happen to mention? Alex is only 12 years old! From a story on FOX 5 news in Atlanta:

Alex’s family said intellectually speaking he was ready to go to college at age ten, but they held him back until now to let his social skills catch up.

The story says Alex’s mother plans on driving him to college each day, but she won’t be sitting in class with him. Her 12-year-old is fluent in Japanese and Latin. He composes music and is a master at chess. She says she knows her son may always lag behind when it comes to emotional development, but she doesn’t want that to hold him back. “If you hold back the intellect,” she said in the news story, “you have more problems with the autism.”

I’m going to keep my eye (okay, my ear) on this story — will be interesting to see how Alex fares this fall. My prediction: come December, I’ll be publishing a post about Alex making the dean’s list!