Some insurance policies cover autism therapy; however the majority of children are utilizing Medicaid funding. Here in chilly Wisconsin the wait list is approaching two years. When we let families know their child may not be eligible to receive services for another two years, we feel terrible. After brainstorming ways to support families in another capacity, we’re thrilled to be launching our new Start Early program.

Start Early is targeted for families who recently had a child diagnosed and are unable to start services right away. It’s an intensive, four-week class that gives families the tools to help their child while they are on the wait list for services. Classes focus on the basics of autism, how to target communication, handle maladaptive behaviors, IEPs (Individualized Education Programs), toilet training and other topics that we feel are the main things parents may struggle with at first.

The biggest benefit of the Start Early program is that families will have access to current, research based information on how to begin teaching their child skills! In addition, parents will learn that all behaviors serve a function, making it not only easier for them to manage problem behaviors, but also to understand why they are occurring. During each session, families will attend a 90 minute presentation followed by time to work one on one with a Board Certified Behavior Analyst. During this time, the family will be able to practice the techniques they were taught during the presentation. Families will develop familiarity with the principles of Applied Behavior Analysis (ABA), which will make the transition into receiving services easier for both parent and child.

Parent training is a key piece of Easter Seals Southeast Wisconsin’s in-home ABA program. Board Certified Behavior Analysts (BCBAs) and Senior Interventionists work to train the line interventionists to best implement the programs, but they also work with the parents to explain why ABA is effective, what the programs accomplish, and the functions of all the behaviors a child can display. The families that we serve love to share amazing stories of their children excelling and learning new skills both during and outside of therapy sessions. Start Early will allow families to have that information up front, before they finish the long wait for waiver funding.

We’ve already had some pretty creative fundraising ideas this year, including:

• a raffle and ticketed networking event
• an accessible Wrigleyville rooftop night at a Cubs game
• a team of runners who raced from Madison, Wisc. across the Midwest to Chicago.

We only established NAB last summer, and the passion each board member has for Easter Seals grows with every interaction. This is National Volunteer Week, so I asked a couple NAB members what they had to say about volunteerism.

Mike Sandy — Chairman of the Easter Seals National Associate Board
Mike said, “It is an incredible honor to be part of the inaugural group for the NAB and I could not be happier to be involved with Easter Seals as an organization.” Mike met Melissa Hohimer from Easter Seals’ Finance Department when he was in graduate school. “I don’t believe I have ever met someone with more passion around their organization and its mission. She continuously spoke about Easter Seals and the type of work they were doing, which lead me to take a deeper look.” Mike has several friends with children who have autism and says the fact that Easter Seals is a leader in providing direct service to children with autism really resonated with him. ”Several of my friends completed tours in either Iraq or Afghanistan, so counseling and reintegration for returning veterans is also near and dear to my heart.”

After graduation, Mike was interested in putting his new found free time to good use. “So it seemed only natural that Easter Seals would be a perfect fit. The fact that the timing coincided with the establishment of the NAB couldn’t have worked out any better.”

Maria Mazza — Vice Chair of the Easter Seals National Associate Board
Maria said she decided to become involved with Easter Seals because of a long standing desire to give back to the community and her interest in working with an organization making a significant impact in the lives of children. “I’ve reached a point in life where I felt I had the time and resources to put my skills, energies and enthusiasm to use for an important cause,” she said. Maria is particularly interested in Easter Seals’ initiatives in the areas of early intervention and therapeutic services. “With such services facing increased demand, Easter Seals is playing an important role in helping children reach their potential. All children deserve in equal opportunity to succeed and Easter Seals is striving to help children in this regard.”

As a board member, not only has Maria had the opportunity to see how children and adults are benefitting from the extensive services provided by Easter Seals, but she has also had the opportunity to personally contribute to one of Easter Seals’ initiatives. “I recorded a PSA in Spanish about Make the First Five Count and the online screening tool created by Easter Seals for the assessment of potential developmental delays. I was truly honored by the opportunity and am excited about the upcoming events the NAB has planned for this year.”

I had the pleasure of participating in the Make the First Five Count Spokespersons Network and Affiliate Marketing Partners Meeting in Chicago a few weeks ago. Thirty-degree temperatures and freezing cold Chicago wind might have pushed the teeth-chattering and ear-numbing limits of this island girl, but the warmth of the personalities, and the very intelligent, altruistic people at Easter Seals and its affiliates got me through.

These individuals tirelessly dedicate themselves to the well being of children and adults with disabilities and special needs, and they’d fit in perfectly with my fellow residents of Hawaii. In Hawaii, we pride ourselves on living through “Aloha,” which means “hello,” “goodbye” and, most importantly, “love.”

Many think of Hawaii as a place of paradise, a never-ending tropical vacation. But the truth is my dear island Oahu is becoming over-populated with a growing crime rate and homelessness. The cost of living is rising and we often come across families that do not have the means to afford proper care for their loved ones.

So if the lives of island locals are not what others perceive them to be, where does the “Aloha” lie? The proof is in the way we interact with each other. Our passion and manner in which we come together to help a struggling member of our tight-knit community is “Aloha.” When I see our therapists, social workers, activity coordinators and caregivers interact with our participants here at Easter Seals Hawaii, I’m reminded that it is people like them that uphold and sustain our island values as well as the mission of Easter Seals.

During the meeting in Chicago, we discussed how many know the Easter Seals name but often forget or are unaware of what we do for others. I am confident in stating, “Easter Seals means Aloha.” The people I met at that Chicago meeting are proof that despite economic hardship and limited resources, “Aloha” will always prevail. We help and guide those with disabilities and special needs to reach their full potential. There is nothing more satisfying than being a stepping stone to make that happen.

And so, if you ever walk past Easter Seals Headquarters office in gusty Chicago, expect to be greeted with one of the most powerful quotes I’ve ever known, “Your life and mine shall be valued not by what we take … but by what we give.” That quote comes from Edgar Allen, the founder of Easter Seals. I’m a true believer.

The Living Our Values award recognizes staff members that go above and beyond in living the values of our affiliate: welcoming, humility, respect and integrity. The award is one I created within the first month I became CEO/President here in Milwaukee, and I was especially moved by the way each one of this year’s four award-winning individuals lives our mission.

One therapist in our early intervention services connected two families together because each had twins with special needs. Her goal was to help them learn from each other and feel less isolated. One of our management team has grown and expanded our workforce services so that in 2012, 17 individuals now are employed in community employment. She was also responsible for expanding our Project SEARCH to a new hospital in 2013. The growth of our job placement has been phenomenal over the last two years. We started with just a handful of success stories in 2010, and now 90 individuals are moving toward community employment.

Another staff member dealt with a family who had been evicted from their home and was living in their car. The children could have been taken from their mother, but this staff member found housing and the family remained together. Another individual started a knitting class at our Workforce Training Center, and the hats, mittens and scarves were donated to a local agency to help those in need.

These staff members represent the creativity, dedication and compassion of Easter Seals staff members across the country. Our awards mark a year in the life of Easter Seals, but the impact of caring staff like these last a lifetime.

Easter Seals 2013 Youth Representative Auburn Smith is a nationally ranked tennis player and aspiring musician who enjoys riding her adapted bicycle and loves to travel. This active high school sophomore doesn’t let a disability get in her way.

There was a time when her doctors couldn’t imagine Auburn doing what she does today. Born with spina bifida and clubfoot, she was just a day old when she had her first surgery. Her parents were told she would likely never walk — something no one in the family accepted.

As she’s grown and faced new challenges, Easter Seals has been there. Auburn’s teachers say she projects a calm confidence and that she is wise beyond her years. Her ceramics teacher says she’s a rock star and “a one of a kind kid.” You can read more about Auburn’s story here.

Is Your Child at Risk? Auburn and her parents attribute much of her success to the treatment she got early in life. The first five years are critical in a child’s life. How is your child doing? You only need 10-20 minutes to check via a free, online screening tool: the Ages & Stages Questionnaires®. Your results will help you see if your child’s developmental progress is on time and alert you to concerns that you can talk over with your health care provider.

We saw so many different classrooms and accommodations for kids with autism — everything from an art therapy room to a calming room where kids can go to chill out and refocus. As Maurice led us to a school store where students work to stock items and cashier, he explained that the school doesn’t use fluorescent lights in the classrooms, and no patterned carpet, either. “It can be distracting for kids with autism,” he said.

I thought it was really cool that Maurice is a huge rockstar — everywhere he went, people were calling out his name and high-fiving him. He is a walking piece of encouragement and inspiration to other families living with autism, and it is so great to see him thrive.

Last Wednesday was one of those days when I know why I’m at Easter Seals and everything just makes sense. The combination of a little PR radio interview thrill and seeing the autism services which are impacted by the work at Easter Seals headquarters was extremely fulfilling.

At one point Kelly turned to me and gushed, “I’m becoming such a huge Easter Seals … fan!” I have to agree. Something about this organization just grows on you and makes you fall in love!

The first is the across-the-board cut to most disability programs and the other is the federal fiscal year 2013 appropriations bills. Here’s a summary of the debate ahead in March:

• March 1, 2013: Across-the-board cuts (or sequester) to almost all federal programs goes into effect. Nearly all programs — including early intervention and special education — will be cut equally by approximately 5%. Unless Congress and the president reach an agreement within the next three weeks, these cuts will be implemented.
• Mid-March: The president will release a proposed budget for fiscal year 2014 and both the House and Senate have agreed to pass budgets this year. These activities are aligned with the standard federal budget process. The budgets do not have the force of law but do allow the president and Congress to establish their priorities.
• March 27, 2013: The current funding law expires on March 27, 2013 and
  Congress must take action to continue to fund the federal government through September 30, 2013. If Congress does not act by March 27, the federal government must shut down.

At every stage of the debate, Easter Seals is working with other advocates to convince Congress to take a more thoughtful and needs-based approach to reaching long-term financial security that does not disproportionately harm children and adults with disabilities and their families. TAKE ACTION: Urge Congress to vote to STOP the across-the-board cuts set for March 1 and preserve critical funding for the life-changing programs that support families with disabilities!

Let’s be real: the needs of adults with autism are significant. In an effort to address these needs, AFAA Recently launched AFAA Applauds, a national initiative recognizing innovative, high-quality support programs for adults living with autism. Through a competitive application process, AFAA selected six organizations for their exemplary results in oriented employment, residential support and community life programs (community life includes social skills, transportation, recreational, safety, spirituality or other categories of service that improve life experiences and outcomes for those living with autism).

Each AFAA Applauds winner received a $5,000 grant to develop a video about the program. The videos will be released in April, and AFAA will promote the videos through multiple communication channels. The inaugural winners of AFAA Applauds are:

• Autism Services Inc., New York
  Autism Services Inc. helps individuals with autism become involved in the visual and performing arts and has improved their quality of life.
• Chapel Haven, Connecticut
  Chapel Haven’s supported living program assists individuals with autism as they obtain jobs, gain a network of friends and participate in a vibrant community life. Chapel Haven’s program sets a high standard for excellence.
• Eden Autism Services, New Jersey
  Eden Adult Services’ multifaceted adult employment program promotes the meaningful engagement of adults with autism in their communities through paid employment and active volunteer service. The program has created successful employment opportunities for individuals with autism.
• Family Adult and Child Therapies (FACT), California
  The Generating All Possibilities 4-year program at FACT supports individuals with autism as they make informed decisions about work, college and where to live. The program helps prepare adults with autism for the future.
• Partnerships with Industry (PWI), California PWI provides adults with autism the opportunity to find employment. PWI has helped individuals with autism reach their potential and experience independence.
• The Friendship Circle, California
  The Friendship Circle fosters spiritual, social, and educational experiences for individuals with autism. The program has created activities that bring value to the lives of individuals with autism.

Keep an eye out for the videos. They are in production now, and we will let you know here when you can access the AFAA Applauds videos and learn more about these fantastic programs.

One item on that list for 2013 is already coming along. By March, our organization will vacate two buildings we have owned for a generation and move into a new facility in West Allis, Wisconsin. Buildings are not transformative, people are. With this move we’ll be bringing most of our Milwaukee county staff under one roof — in fact, we’ll be delivering services and programs for children and adults under one roof for the first time in our affiliate’s history.

We are calling the new facility our Easter Seals Generations Center. This huge move is one priority that is above all others and has really added an element of excitement and anticipation to 2013.

What’s more, we’ll be launching a new program called Start Early in April! Start Early is a series of training sessions to help families who have just learned their child has autism. It will offer strategies and support for families who are learning what autism is, and it presents options for parents and caregivers who want to know how they can take an active part in their child’s development.

We will have trained staff to consult, practice and support families navigating Wisconsin’s government systems, and then begin working with their child at home. This will be another way we are creating a world of possibilities for children living with autism.

So Happy New Year! 2013 will be exciting!

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.