Long-term services and supports — like adult day services, personal attendant care, assistive technology, transportation and housing — are critical to helping people with disabilities of any age. Our current system forces people to spend down their financial assets until they reach poverty before they can receive the help they need. It fails to provide realistic opportunities for personal planning, and support to families and caregivers. We can and must do better.

Easter Seals needs your voice to help to make it easier for people to access long-term services and supports. We are partnering with other national organizations in sponsoring a petition to Congress. Please follow the link below and add your name to the thousands of supporters who have already signed the petition!

Tell Congress: Address Financing for Long-term Services and Supports.

Thank you for your advocacy!

With 50 million people with disabilities across the country, the need for Easter Seals life-changing work continues to grow. But we are making progress every day thanks to you. We encourage you to help us call attention to the experience of people with disabilities, and to raise awareness of and advocate for the services they need.

• The president’s budget recommends a much-needed increase for the federal early intervention program. But we need to convince Congress that this program needs to be a high priority. Sign our Make The First Five Count petition. Help us break last year’s record of 40,000 signatures!
• Spread the word about our Ages and Stages Questionnaire. To date, thousands of parents have used this free online developmental milestone tool to track their child’s development.
• It’s Spring and that means thousands of supporters like you are signing up online for Easter Seals Walk With Me events across the country. Find an event near you and join in the fun!

Well, Easter Seals long-time corporate sponsor MassMutual really wanted to dive into this issue by raising awareness about siblings with disabilities and offer ways to help with financial planning for caregivers.

To celebrate siblings and provide financial and educational resources for those who are caring for a sibling with a disability, MassMutual is speaking out over social media.

They’re encouraging everyone to share what their sibling means to them. It can be on Facebook, Twitter or Instagram — just use the hashtag #siblingsmatter any time from April 30th to May 31st. Even if you don’t have a sibling, you can still post about friends and family who are like a sibling to them.

And, it gets better! Once the hashtag has been used 10,000 times, MassMutual will donate $25,000 to Easter Seals to supports its mission of providing help, hope and answers to the more than one million children and adults living with disabilities and other special needs each year.

If you have a sibling with a disability, they can find helpful information, connect with others in similar situations or access help from a MassMutual SpecialCare expert by visiting facebook.com/massmutual or massmutual.com/specialcare.

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.”

Congress decides the funding level for this program each year, which means we need to sign the Make the First Five Count petition each year. So, if you signed the petition last year, you need to sign it again for it to help this year. Let’s break last year’s record of 40,000 signatures!

It’s very easy. All you have to do is link to our Make the First Five Count page and scroll to the bottom. Hit the “sign the petition” button and fill out your contact information. In less than two minutes, you can make your voice heard. Thank you — your voice really matters!

An online support group called My Autism Team describes itself like this:

A social network to make it easier for parents to connect with each other and exchange insights about providers. Our philosophy is to make it easy for all parents to get to the answers they need.

I’ve found My Autism Team to be a fantastic resource to parents raising a child with autism. Their site features four main sections:

• 1. Find Providers
• 2. Find Parents
• 3. Question & Answer
• 4. Activity

With more than 40,000 parents on the My Autism Team site, there is a wealth of expertise from other parents. Parent-to-parent support is important, and social networking provides another opportunity to build connections and a community of support. Check out My Autism Team and see if it’s a site that works for you.

Awareness is great, but maybe acceptance should be part of the message, too. The Autistic Self Advocacy Network (ASAN) is leading a campaign to emphasize the importance of moving from awareness to acceptance, and labeling April Autism Acceptance Month is part of this movement. From the ASAN web site:

Autism Acceptance Month is about challenging ignorance, prejudice, fear and hysteria about autism and autistic people.
Autism Acceptance Month spreads the word that autism is both a neurological disability and a natural part of human diversity, and centers the voices of autistic people in the conversation about us.

I would like to think that everyone already knows about autism, that we are done with awareness, but I know this isn’t true. I would like to think that acceptance is a given, that our society accepts all people with disabilities, but I know this isn’t true, either. Awareness and acceptance are both important.

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.

World Autism Awareness Day has succeeded in calling greater international attention to autism and other developmental disorders that affect millions of people worldwide. The current session of the United Nations General Assembly has adopted a new resolution on this issue, demonstrating a commitment to help affected individuals and families. The resolution encourages Member States and others to strengthen research and expand their delivery of health, education, employment and other essential services.

There continues to be a growing demand for services and supports to ensure individuals with autism experience a high quality life. Having high profile organizations such as the United Nations taking an interest in autism increases visibility to the needs of those living with autism.

April 2nd is an important day for autism, and Easter Seals will continue to send the message every day that individuals with autism deserve to experience life to the fullest.

I was introduced to Ben at Easter Seals Celebration of Giving in San Diego last May and was immediately struck by his positive attitude, not to mention his wit. And his charm! So now I’m one of the lucky ones to call Ben a friend. There’s no doubt his personality is magnetic: he wins over every crowd he speaks to. My grandparents attended the event in San Diego, too and had the honor of meeting Ben. They were so taken by him that they asked me for his photo. One year later, it’s still on their fridge!

I highly recommend you join me in regularly reading Ben’s blog: he is so active that it’s the only way to keep up with him.

In the post about his accident, Ben writes that when he was a teenager, he and his brother rode dirt bikes with their dad just about every weekend. On race weekends, their mom would come too, joining other motocross moms to set up tents, get the food together and eventually help strap up a boot or two.

Ben was 17 years old on March 19, 2006, the day his family traveled together to Poole, Kentucky for a race. “The track at Poole was extremely poorly designed,” Ben wrote. “We as a family had always said we would never race there because of the quality of the track. But, for some reason, that weekend we decided to go ahead and race there.”

Race officials cancelled the race after realizing there weren’t enough racers to fill the track, but after a little lobbying, the officials changed their minds. The race was back on.

Most of the people in the race that day were either family, friends of Ben, or guys Ben knew from previous practices or races. He recalls that “after a little stretching, some warm-up starts, and chugging an energy drink, I competed in my last motocross event.”

Ben doesn’t go into details about the accident, only saying that he was unable to breathe on his own immediately after the wreck. His father performed CPR for nearly 30 minutes before LifeFlight arrived to fly him to Deaconess Hospital in Evansville, Indiana, where it was determined that he’d broken his C1 and C2 vertebrae and suffered a spinal cord injury.

Ben was eventually transferred to the Shepherd Center in Atlanta for three months, and then after a short stint at home he shipped off for three months of rehab at the Kennedy Krieger Institute in Baltimore, where he worked with the same doctor who treated Christopher Reeve. From Ben’s post:

Since the day of my injury, so many things have changed. I’m not that cocky, stubborn 17-year-old boy anymore. I am now a 24-year-old man living with a disability in a much different world than in 2006.

I cannot pop out of bed every single morning and do what I please. It takes somewhere around an hour and a half, and two nurses to get me up. Then, I have to have someone who knows exactly how to take care of me, drive me to where I need to go. Whether I am going to class, where I am now a junior at the University of Southern Indiana, traveling to therapy, or driving to a speaking engagement.

Either way, things just are not as effortless and simple as what they used to be, but I am still living and breathing.

Ben uses his blog post to thank all of the people, friends, family, nurses, therapists and total strangers who helped him along the way. “I would not be here, living my life happily, not living in regret, without the people who have supported me along my travels,” he says, adding that at age 24, he’s accomplished more with his life than he ever imagined before his injury, including his year as a national adult representative for Easter Seals. “During my travels as the local and national representative, I have met some incredible people that are destined to be lifelong friends.”