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!

Like so many of our other interns, Kelly came in a little unsure. She is leaving us a pro, though, and I’m so proud of her. Good luck with your future endeavors, Kelly, and keep writing!
 

A few weeks ago I was looking through Ellen Seidman’s Love that Max blog and came across a post called 5 Love Stories to Celebrate. One of the love stories in particular caught my eye, so I read their story and watched their wedding video. Within minutes, my eyes were glossy and I was sniffling at my desk. Luckily, everyone in my cubicle area was at a conference so there were no witnesses.

Ian and Larissa met in college and knew right away that they were meant for each other. They talked about marriage early on and planned to marry once they were finished with college. After ten months of dating, Ian got in a terrible car accident that caused significant brain damage and left him in a wheel chair. At first he couldn’t communicate and needed assistance to do everything from eating to dressing.

Larissa moved in with Ian’s parents to help out. For four years she stuck by his side, knowing their relationship would never be the same, but also knowing their love for each other would never change either. To Larissa, the only thing the accident changed was Ian’s outward physicality; it didn’t change who he was and it did not alter an ounce of the love she had for him.

For four years Larissa told herself that if Ian reached a point where he could communicate with her in basic ways, she would marry him and continue on the life they had planned before the accident occurred. She knew full well how difficult it would be to watch her friends marry men who could dance with them at their weddings and drive them to church on Sundays, but her commitment to Ian did not let those things get in the way.

Larissa was very honest in a blog post she wrote about their relationship, sharing the real challenges she knew she’d face:

Marrying Ian meant that I was signing on to things that I don’t think I ever would’ve chosen for myself — working my whole life, having a husband who can’t be left alone, managing his caregivers, remembering to get the oil changed, advocating for medical care, balancing checkbooks, and on. The practical costs felt huge, and those didn’t even touch on the emotional and spiritual battles that I would face.

Ian and Larissa were married on a warm august evening underneath her parent’s trees in the mountains, surrounded by their family and friends. “The decision to get married was one of the hardest but simplest decisions we’ll face,” said Larissa. “I’ve heard that choosing marriage for anyone can raise doubts and fears. I think a disability takes those normal fears, and multiplies them.”

Their beautiful and emotional ceremony was filled with tears, both happy and sad. “Even though we chose marriage, we chose it sadly,” said Larissa. “Sorrow has been a permanent resident in our 20s.” Larissa shares with her readers that even though sorrow has been such a big part of their life, they find hope and faith and believe wholeheartedly that they do not walk this road alone.

This story hit a soft, almost liquid spot in me because I recently got engaged. I like to think that the love my fiancé and I share is just as strong as theirs, and faced with this same situation, we would have the strength and enduring love that Larissa and Ian display.

I’m sure it’s much easier said than done and I can’t imagine being in her shoes, but I think she is such a great example of what commitment and love really mean in a day and age where people often throw out what’s broken, rather than try to fix it.

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.

News about the fellowship got me wondering whether the National Endowment for the Arts has a history of working with people who have disabilities. I checked out their web site, and wow! Do they ever! an entire department of the NEA is dedicated to making the arts accessible.

The National Endowment for the Arts’ Office for Accessibility does a lot of things to accomplish its goals. When I checked out their web site their Careers in the Arts for People with Disabilities program really stood out. The program partners the U.S. Department of Education, Health & Human Services, and the Social Security Administration with the Kennedy Center for the Performing Arts to sponsor artists and arts administrators with disabilities, You can contact the Kennedy Center for more information on that program, and while you’re at it, why not check out a series of state-wide forums on Careers in the Arts, organized by UCLA’s National Arts and Disabilities Center, too.

I plan on taking a look at (okay, a listen to) these and other NEA programs for people with disabilities once I get a little more settled in here at my artist retreat in Vermont. What a privilege this is, I am truly grateful.

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.”

He and his team hiked through rocky, snowy terrain in below-freezing temperatures for 10 days to accomplish something really amazing. Eli’s father was at his son’s side on the 70-mile trek, and he reported Eli actually led the way at times. “We were dragging. We were experiencing our own sense of disability as we went up into the mountains,” he said. “He led us all the way to base camp.

Over 2,000 people from all over the country signed a card Easter Seals sent to congratulate Eli on his achievement, and we want to congratulate his family, friends and experienced guides here as well. Support like that is crucial for any person to achieve their dream, whether the dream is climbing the world’s tallest mountain or taking a first step during physical therapy. Way to go, Eli, and way to go, team!

Carrying his son in his arms

by Kelly Zatlin

During Monday’s terrible bombing at the Boston Marathon, many at Easter Seals and around the country were immediately concerned about the condition of Team Hoyt, the famous father and son marathon duo in which the father, Dick runs with his son Rick, who has Cerebral palsy. Being new here, I wasn’t aware until this week that The Hoyt Foundation is a partner with Easter Seals.

Thankfully, Team Hoyt remained unharmed. Just one mile from the finish line, they were told to stop because of an explosion. Not knowing what to do or where to go, the father and son were helped by a stranger who took them back to their hotel in his SUV. Dick had to carry his son into the hotel because Rick’s wheelchair got lost in the chaos of everything.

The Hoyts and the 30 other members running in support of Team Hoyt remained unharmed at the race. This was Team Hoyt’s 31st run in the Boston Marathon, and they are quick to say it won’t be their last.

While what happened in Boston taught us that there are some awful people in this world, it also taught us that there are some really fantastic people who want to help, serve and be there for others. Even now in this sad time after the 2013 Boston Marathon, Team Hoyt and the good that they do can be an inspiration to people around the country. The events of this week aren’t going to stop Team Hoyt from running marathons, and it’s not going to stop other athletes with disabilities from taking part in marathons and triathlons, either.

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 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.”

So when I heard that the Segal Design Institute at Northwestern University was looking for projects to help people with disabilities, I suggested they have their freshmen engineering students try to come up with some easy way we blind folks could keep track of the color of our clothing. Right now I put a safety pin in the tag of anything I own that is black, and a paper clip on anything white. I wear other colors, too, and I memorize what color those other things are by the feel of the clothing.

My proposal got a thumbs-up, and after my Seeing Eye dog Whitney and I visited Northwestern to explain what I needed, one engineering class there divided into four different groups to tackle my problem. They visited our apartment a couple of times to take a look at the way I arrange my clothing now and to ask questions that would help with their research. Freshmen in other Design Thinking and Communication class sections were working on other projects for people with disabilities at the same time. Here are some examples

• A man who uses a wheelchair wanted an easier way to fold up the footrests when it came to transferring into a car or a regular chair
• A man with cerebral palsy was looking for a more efficient way to pull his trousers up on his own
• Occupational therapists asked for a device that might encourage their clients with Parkinson’s disease to do finger exercises on-the-go
• The Rehabilitation Institute of Chicago hoped a class could figure out a way for clients with visual impairments to know how fast (and at what speed) they were walking on exercise treadmills
• a woman who uses a wheelchair and enjoys outdoor concerts was looking for a way to slide from her chair onto the lawn, then get back into her chair again on her own when the concert was over.

Whitney and I traveled to a Design Expo at Northwestern to hear all of the students present their completed projects. When the students working on my color identification challenge had visited our apartment in February with prototypes, they ranged from carabiners to iron-on tags to QR codes that my talking iPhone could read to me. Seeing (okay, touching) what these four teams had come up with in the end made me glad I’d come out of the closet about my wardrobe woes! All four teams had expanded on my tried and true safety-pin method, each team inventing different things to hang from the pin to correspond to the color of the item.

The “Fantagstic!” team came up with acrylic shapes on cloth tags. They reasoned that cloth tags would be lightweight, so I could use two or more at a time to identify multi-colored items. The tags another team came up with were laser-cut acrylic shapes called “Depindables.” The “Code of Many Colors” team used small glass beads on the safety pin: one bead means black, two beads mean white, and so on. “Tag Team” was the only team to use traditional Braille code on its tags — the other teams learned from research that a majority of people who are visually impaired do not read Braille. The tags that all four teams came up with had all been tested to withstand high temperatures in the washer and dryer.

Judges from engineering firms were on hand to decide on winners for each proposal, and the winner for mine was … drumroll, please … Tag Team!

The Tag Team system is more than a label to safety-pin onto my clothes. It’s also a way to organize my closet and laundry. Tag Team includes a laundry hamper that holds a number of mesh bags, each bag with a tag attached that corresponds with a single color. They figure doing laundry will be easier if I don’t mix all my clothing in the hamper, only to have to resort it all again when the wash cycle is over. “All you do is put your clothes in the bag it belongs in, take the bag out, tighten the string, and throw the bag in the washing machine.”

I had to hand it to ‘em. But if you ask me, all the teams at the design expo were winners. These kids are just freshmen, and not only have they learned about design process, but also how much it can mean to work together to help people with unusual, unique, and unmet needs. I was the biggest winner of all, though: I got to work side-by-side with these talented and thoughtful young people, and when design expo was over, I walked out with custom-made prototypes of all the tags!

Folks I talked to from the Segal Design Institute at Northwestern University told me they’re always looking for new project proposals from people with disabilities and organizations who work with us. If there’s something you need and you live in the Chicago area, submit a proposal soon. If you don’t live near Chicago, I strongly suggest you encourage a college near you to start a similar program. Working with this one at Northwestern was, well … fantagstic!