Helping Military Families Find a Path to Happiness

happy-family-weekendFor the past five years of my 15 year tenure with Easter Seals, I’ve had the privilege of stewarding our organizational efforts in support of Military and Veteran Caregivers. The Elizabeth Dole Foundation’s groundbreaking research, Hidden Heroes: America’s Military Caregivers told us an estimated 5.5 million spouses, parents, siblings, and friends provide care to those wounded, ill or injured who have served our country across the eras of WWII through the more recent conflicts in Iraq and Afghanistan.

Those research findings made me think: is there an immediate action we at Easter Seals could offer that would inform and inspire these caregivers, help them feel restored and relieved, leave them connected and confident? Thus, Easter Seals’ Military Caregiver Webinar Series was born.

We started out with no additional funding support, no collaborative partners and a limited organizational infrastructure. What we did have, however, was a vision and commitment in support of Easter Seals’ mission to provide exceptional services that ensure all people with disabilities (or other special needs) and their families have equal opportunities to live, learn, work and play in their communities.

A little over one year later, from these modest beginnings, we’ve produced nine hour-long informative and skills-building webinars (including two in Spanish!) and have assembled a team of six passionate partner organizations:

Newman’s Own Foundation has also provided valuable financial support. Most importantly, we’ve reached over 1,300 military caregivers who have either joined us in-person or on-line when they may have a spare moment in the midst of their very busy lives. Most rewarding has been some of the feedback we’ve received. Some examples:

You are putting us back on a path to a happy life. My husband (26 years my senior) is a WWII vet and we had such a bout with anxiety because of his asthma treatment, I thought we were going to be forced into moving into an assisted living facility pronto. All the little grievances we were both experiencing have been subdued and we are actually having more fun now than before he started the medications. Thank you, thank you…

This is my first meeting/ webinar and this is great! I see now that I am not the only one. I have two little ones that I can’t put in daycare and can never make it to any meetings down here since I cannot leave my husband with the kids. I am so thankful for these

Gracias, [ese programa] es de gran ayuda para todos aquellos que por la distancia y situaciones personales no podemos llegar a las clases presenciales. (Thank you. [This program] is a big help to those who, due to distance and personal situations, can’t come to classes in person.)

During our March Spanish webinar, participants contributed more than 100 questions and comments through the webinar software’s chat feature — sharing their experiences and challenges with caregiving, requesting advice, and expressing gratitude for the support and resources provided by the speakers.

Last month, Today’s Caregiver magazine and Caregiver.com awarded our webinar series a Caregiver Friendly Award in the “services” category. While this is a great honor, my hope is that the caregivers know this award is all about them — their passion, their commitment, their dedication. Easter Seals is just hoping to make the world a little more “friendly” for military caregivers.

 

What Was it Like for People with Disabilities 25 Years Ago?

Twenty-five short years ago, the United States Capitol had no wheelchair ramps. You read that right. The monument that pretty much defines American equality and justice was inaccessible to people using wheelchairs.

Disable demonstrators crawl the Capitol steps. Photo: Action for Access, Tom Olin

Demonstrators with disabilities crawl the Capitol steps. Photo: Action for Access, Tom Olin

In 1990, activists in Washington, D.C. struggled out of their wheelchairs and crawled up the Capitol steps to urge lawmakers to pass the Americans with Disabilities Act. The Capitol Crawl and other demonstrations across the country were modeled on tactics used in the Civil Rights Movement of the 1960s, and they helped push legislators to pass the ADA 25 years ago this month.

Some Millenniums, and all members of Generation Z have no concept of life before curb cuts on sidewalks and Braille on elevator buttons.. Accessible design is so common now that even older generations hardly remember buildings without wheelchair ramps or public transportation without lifts to accommodate people who need them.

An NPR reporter asked Katy Neas, ‎Executive Vice President of Public Affairs here at Easter Seals Headquarters, to remind us what things were like back in the 20th Century, and Katy told the reporter that when she was working with Easter Seals to get the Americans with Disabilities Act passed in 1990, too many people with disabilities were out of sight — and therefore out of the minds — of the general public.

“There was a lot of ignorance about the interests and abilities of people with disabilities,” she said. “Discrimination and low expectations were part of the mainstream culture. Why would someone who uses a wheelchair want to go to the movies? Why would someone who is blind want to eat in a restaurant?” that last quote stopped me in my tracks. We’ve come a long way, baby.

Twenty-five years ago, Easter Seals hired a Minneapolis ad agency to create posters for adults and children with disabilities to bring along to protests and events across the country. The posters were used in print public service announcements, too. More from the NPR story:

As an outspoken advocate for the ADA, Easter Seals created a series of powerful posters that illustrated the dilemmas — and desires — of disabled Americans and helped the country understand the reasons for, and responsibilities resulting from, the anti-discrimination legislation.

We’ve still got a ways to go (for example, the unemployment rate among people who are blind still hovers around 75%) but we really have come a long way in a short time. See for yourself – take a look at our historic ADA posters now for an idea of what things were like for people with disabilities back in the dark ages.

 

Putting Words Into Action

The U.S. Flag by a windowThis country has a long history of men and women making sacrifices for the freedom of our country.

As I celebrate our freedom and our county’s independence this holiday with my family, I especially appreciate how actions across the country are enhancing the independence of those touched by military service.

Independence is not driven by words but by actions.

It is in our DNA as a country, an attitude across the nation, to want to assist those individuals who have served in uniform and their families. At the Joint Chiefs of Staffs we called this the “sea of goodwill” and our mission was to turn this groundswell of support into actionable steps.

So this July 4th, I’d ask everyone to go beyond what they might usually do (for example, thanking us for our service) and get to know us through action. A little creativity and an inquisitive mind will turn up lots of opportunities to put your talents to good use.

For example, to the medical professionals who don’t currently accept Tricare, would you consider doing so? It would mean a lot for spouses and children to be able to work with doctors located outside of the military medical system.

Or to the business professional at the airport, would you email your HR team and ask what your company is doing to hire veterans?  Ask them how many veteran candidates the organization has in the hiring pipeline and what is being done beyond online job boards to recruit veterans. Encourage them to send you resumes of veterans for positions that you have opening up.

Myriad organizations serve veterans and they are always seeking new volunteers. If you are a frequent reader, you know that I work with Easter Seals, the number one provider of services to the disabled. It offers many ways to engage military families within your community through activities such as summer camps for military children or respite services for spouses and caregivers.

In New England, our affiliates are implementing Veterans Count, a one-of-a-kind care coordination program that provides free and confidential support to veterans and military families.  Care coordinators travel to the client, responding to needs while being unencumbered by office hours or locations.

Easter Seals care coordinators would welcome local business and community professionals who are willing to lend their time with employment issues (think mentorships and career advice), mental health/substance abuse support (such as pro bono counseling), deployment support (transportation assistance is always appreciated) and in-kind provisions. Grocery store and gas cards are items that can be easily picked up and dropped off at a local Easter Seals and truly make a difference when a family or veteran is struggling to make ends meet.

I will pledge this to you. If you extend your thanks by taking some action, you will become an honorary member of a special network of people who represent less than one half of one percent of the U.S. population. Then we can thank you for your service.

 

When not being independent is good

Beth and Whitney, racking up the stepsI gave a presentation to senior citizens at the Skokie Public Library’s Talking Books Club, and a lot of the conversation afterwards centered on independence. We shared tips for keeping track of our prescriptions, identifying colors of clothing, and using talking computers to read and write.

A woman there who has macular degeneration piped up and said she loves to cook, but when her daughter offered to buy her a bag of frozen, chopped onions at the grocery store, she agreed to finally give in and quit insisting on dicing them herself. “I’m learning to stop being so goddamned independent and accept help,” she said. “But it hasn’t been easy.”

Her words were refreshing, and she didn’t have to be able to see to know we were all nodding in support. Our hour at the library went by quickly, and once I’d thanked the Talking Books Club for having us, a dapper 80-year-old man named Jim guided Whitney and me to his car to take us home.

I’ve known Jim for years now – his wife is in one of the memoir-writing classes I lead here in Chicago. He drives Whitney and me to that class every Thursday, and when he found out I’d be speaking to a Talking Books club, he volunteered to drive Whitney and me to the library for our presentation, too.

Jim has the wisdom of age and the spirit of youth. During our rides to the memoir class every week I’ve had the privilege of hearing his stories about growing up in a small town in Illinois, the mother who gave him his first violin, and getting free room and board in exchange for working as a houseboy for John Kenneth Galbraith’s family at Harvard. “They said they named their son Jamie after me,” he says shyly. “But I’m not sure that’s true.”

Jim is not exactly forthcoming, but when I ask questions, he answers. In our 20-minute rides to class he’s shared the agony and ecstasy of raising children, his appreciation for his talented grandchildren, his work writing the Illinois Power of Attorney Act and then getting it through the state legislature during his career as partner in the Chicago firm of Chapman and Cutler, and his current role as president of the board of the Chicago School of Violin Making.

The Chicago School of Violin is one of only a handful of such schools in the world, and it happens to be located very close to the Skokie Public Library. “Would you like to stop at the school along the way for a tour?” I would. We did. It was amazing.

On my rides to memoir-writing class with Jim, I often remind him that he doesn’t have to come each and every week. Whitney and I are capable of taking a bus. He pretends he doesn’t hear, and you know what? That’s okay with me. Just like my new friend in the Talking Books Club, I’m learning to stop being so darn independent.

 

Being a mom with a disability

Linda Long and her son when he was a toddler (he's now 10)

Linda Long and her son when he was a toddler (he’s now 10)

I am pleased to introduce Linda M. Long-Bellil, Ph.D., J.D. as a guest blogger today. Linda is an Assistant Professor at UMass Medical School/Center for Health Policy & Research. Linda  and her husband happen to be parents with disabilities who are raising a typically developing child. Linda shares her experience and advice for other women with disabilities who want to become moms, too.

Ten years of being a mom

by Linda M. Long-Bellil, Ph.D., J.D.

This year, my son, Ben, turned 10, which for me meant 10 years of being a mom. I recently rediscovered an article that I wrote when our Ben was only 6 months old. It’s quite something to look back and see how far we’ve come – my husband, Ben and I.

I remember the sense of wonder (combined with exhaustion) I felt when he was born. And how it took awhile for it to really sink in that I was a mother. Now it seems like second nature and I barely remember when I wasn’t a mom.

I remember the challenges we faced when he was little, figuring out the logistics of caring for a baby when we both have physical disabilities (I have spina bifida and my husband had polio). Luckily, a lifetime of disability has its benefits – it teaches you to be resourceful and to adapt. And so, my husband and I were able to figure things out. We have also been lucky to have lots of family support. Thank goodness for Grandma!

The days of nighttime feedings and wet diapers are long gone, replaced with new challenges. How much time to let him spend on his iPad? How can we get him interested in reading a book?

Sometimes we need to do things a little differently to connect with him. For example, we can’t really ride bikes with Ben, but my husband works on the bike with him. Instead of running around the yard together, they wrestle, which keeps them close.

I love to watch Ben play with his friends. The joy I see on his face and his happy laugh make me smile all over. There is nothing more fun than watching your child have fun.

Having a child connects me to other people in ways that I never anticipated. I now have a topic of conversation with people with whom I might otherwise have none. At work, I probably have at least one conversation a day with another parent about our kids. One Mom and I bonded over the fact that a conference out of town forced us both to miss Halloween.

Being a Mom has opened up a whole new world for me. I only hope that other women with disabilities who want children have the opportunity to experience the sense of wonder and feeling of belonging that motherhood has brought me.

 

The Supreme Court Hands Down a Major Victory for People with Disabilities

ES_Marque_Supreme-062515

The U. S. Supreme Court’s historic ruling upholding affordable care subsidies is an enormous win for people with disabilities.

Had the plaintiffs in King v. Burwell prevailed, as many as 6.4 million Americans would have been in danger of losing the federal tax credits they need to pay insurance premiums under the Patient Protection and Affordable Care Act (ACA). Of vital importance is the fact that of those eligible for assistance — individuals and families with incomes between 100 and 400 percent of the federal poverty level – many are people living with disabilities.

According to a 2014 Senate report, over 28 percent of non-institutionalized adults aged 21-64 with a disability in the United States live in poverty compared to 12.4 percent of those without a disability, more than any other demographic measured. The report also found that American households with an adult member with a disability earn 38.4 percent less than households without an adult with a disability.

But these figures only hint at the importance of the tax credits to those with disabilities who need them. In our Easter Seals communities, where we serve individuals with disabilities and the families that care for them, we see daily the difference affordable healthcare makes. For many, access to medical services and products, including rehabilitative and occupational therapies, is the only way they can hope to achieve and maintain independence and employment.

The welfare of so many depends on the survival of the ACA, and this latest legal challenge was a true cliffhanger, turning on the court’s interpretation of a few words of statutory language.

In King, the petitioners argued that the Act only allows tax credits for healthcare plans bought in a market, or exchange, set up and run by a state. The problem is that when a state declines to set up an exchange, the law requires the federal government to step in and operate a federal exchange in that state. The petitioners argued that the language of the law precluded tax credits in these states. The court viewed the ambiguous language in the context of the whole Act and, in a 6-3 ruling, found that the federal tax credits applied to both state and federal exchanges.

The majority opinion noted that “state and federal exchanges would differ in a fundamental way if tax credits were available only on state exchanges—one type of exchange would help make insurance more affordable by providing billions of dollars to the states’ citizens; the other type of exchange would not.” The Court further found that such a distinction “would destabilize the individual insurance market in any state with a federal exchange, and likely create the very ‘death spirals’ that Congress designed the Act to avoid.”

The Supreme Court may have been speaking to the specific legal issue in King, but the words of the justices have particular and powerful resonance for those living with disabilities. Access to affordable healthcare is integral to lives filled with promise and potential. Ensuring that those who need it, wherever they live, have access to federal subsidies is the fundamental essence of the law. Put another way, every challenge to the ACA is a challenge to the health, functionality and independence of those with disabilities. Let’s hope King marks an end to it.

 

Visit easterseals.com/advocacy to stay on top of breaking news from Capitol Hill and to find ways to have your voice heard in Washington D.C.

 

 

Disability fraud is such a problem, Florida passed a new law

dog-blogStarting one week from today, Floridians who misrepresent themselves in order to use a service dog could face criminal charges. Newly created F.S. 413.08(9) was passed in response to a growing number of fake service dogs in Florida, and starting on July 1, 2015, a person “who knowingly and willfully misrepresents herself or himself, through conduct or verbal or written notice, as using a service animal and being qualified to use a service animal or as a trainer of a service animal commits a misdemeanor of the second degree.”

Violators must perform 30 hours of community service for an organization that serves individuals with disabilities, or for another entity or organization chosen by the sentencing court. Community service must be completed within six months of sentencing.

I know any regulatory line can look arbitrary, and some people may think this new law in Florida is too harsh. But just think about it. Faking a disability to bring a dog to a place of business really can cause harm to people with disabilities. We understand that people want to bring their beloved dogs with them everywhere they go, just like people with disabilities who use service dogs do. The difference here is that those of us who have disabilities and use service dogs need to have them along to do tasks we are incapable of doing ourselves.

Service dogs are highly trained to learn to complete these tasks without drawing attention to themselves or their human companions — my Seeing Eye dog Whitney had two years of training before being placed with me. It’s not hard to tie a vest on a dog, and it’s pretty easy to get fake certification for a dog as well, but it’s not easy to live with a significant disability.

Faking that you have a disability is an insult to everyone who really needs a service dog, as well as to the airlines, hotels, restaurants and stores who try to do what’s right — the new Florida law also allows businesses to remove a service animal that isn’t under the handler’s control, isn’t housebroken or is a serious threat to others.

I applaud this new law — let’s hope it helps deter people from scamming the service dog system.

Help advocate for laws that protect people with disabilities at easterseals.com/advocacy, and also learn more about legislative landmarks here.

 

Special dads with special sons

David Royko’s poignant Father’s Day post made me think of another loving father I know. Here’s my husband Mike Knezovich with a guest post, an honest and thoughtful tribute to special dads.

by Mike Knezovich

I was walking to a sandwich shop here in Chicago and was stopped in my tracks by the sight of a boy in a wheelchair and a man, presumably his dad, collecting themselves on the sidewalk. They had clearly just unloaded from the car parked nearby, and were readying for a walk.

It wasn’t the kind of wheelchair designed to be propelled by its user. It was, instead, focused on holding the boy—who clearly had substantial physical disabilities—in proper posture, with a headrest, and footrests arranged for that purpose, and with high handles to make it easy for someone else — in this case his dad — to push. Seeing it was a flashback to my own rituals of outings with our son Gus.

A visit with our son Gus at his group home.

A visit with our son Gus at his group home.

The father made a last round of adjustments to the boy’s ball cap, to his seatbelt, and then gathered himself to push his son on a walk.

For a moment, I wanted to walk up to him to say something like, well, I didn’t know what. That it’ll be all right? What the hell did I know about whether it would be all right? And as a frog the size of Alaska grew in my throat, I thought better of saying anything to him just then, because, well, a stranger walking up and breaking into tears might not lift up his day.

By the time I left the shop with my sandwiches, and I was more composed, the man and his son were long gone. For a tiny split-second I wished I’d gone ahead earlier and told him everything was going to be alright. But in the next split-second I realized, again, that I couldn’t, honestly.

Beth and I are better than alright. But it isn’t the all right either of us had in mind. And it was harder than hell to get to our version of all right. That’s what the father and his son on the Chicago street face. Even if they have great friends and family and resources, it’s going to be really hard.

And if I ever see that man and his son again, this time I know what I’ll say to him. I’ll tell him he’s not alone.

 

Fatherhood with autism in the mix

It’s my pleasure to introduce David Royko, PsyD, as a guest blogger to talk about fatherhood and his 22-year-old son Ben, who has Autism Spectrum Disorder. Visit David’s personal blog to learn more about his family and books, including The Chronicles of Ben: Adventures in Autism as well as Royko in Love.

BabyBoys

Babies Ben (left) and Jake

Fact 1: Nothing changes a guy’s life like fatherhood.

Fact 2: Nothing changes fatherhood like autism.

To be clear from the outset, when I refer to autism, I mean the classic, severe disorder that negatively and profoundly impacts the person for their entire lifespan. That is our son Ben’s reality. I am not referring, necessarily, to higher-functioning individuals who live with, for example, Asperger’s. Many, unlike Ben, can speak eloquently – or otherwise communicate – about autism and what it is for them, often not seen as a disorder at all, but a difference. I am writing only about what it has meant for Ben and for us.

Rocking newborn Ben or his twin Jake as they fussed at 3:00am, almost 22 years ago, I was sleepless, sweaty (it was a hot summer), exhausted, and getting to know the local cop’s overnight schedule patrolling the neighborhood.

Late night feedings are just one of countless little and big parental tasks and challenges – arduous, annoying, mundane, stressful, surprising, and required. They’re ploughed through with eyes (and ears and nostrils) focused beyond. A potentially wonderful, or at least decent and reasonably happy future awaits, we hope — for them and, unconsciously at least, for us too, Mom and Dad, with dreams for them and joy from sharing them for the rest of our lives.

One of those long nights, a favorite symphony of mine came on the radio as I held Ben, and in my drowsy, half-dreamy state, I pictured him growing into a conductor, the top spot in the classical music world, except for being a composer. So I envisioned him as the composer and the conductor. Then I imagined him simply getting to know and love this symphony, of my sharing this with him, discussing it with him, attending concerts with him.

OK, time for some of those changes.

Forget about Ben being a conductor. Or composer.

Forget about Ben talking about music beyond a word or two.

And forget about sitting with Ben in Orchestra Hall with the Mahler 3rd blazing.

But there’s good stuff.

Jacke and Ben, December 2013

Jake and Ben, December 2013 (photo credit: David Royko)

Ben is a musically perceptive guy, and he has strong preferences and loves. Even buried under his autism, with only little geysers of musical awareness bubbling up, we know for example, based on requests, he likes horns and brass, mandolins, violins, Schubert piano music, and Rafi (oh well). Overall, the guy has fine taste.

Our listening is done in the car, where he reads the stereo panel’s display to see what’s being played. Sometimes it’s clear, but he often comes up with his own “interpretations” of what he reads.

Like “Freight Train.” We figured out this means Nickel Creek’s bootleg Freight and Salvage disc, because the display’s limited length only gets as far as “Freight and Sa”.

Then there’s “Monkey’s Music,” which was Thelonious Monk’s “Monk’s Music.” It wasn’t obvious since Ben also loves monkeys, but it does suggest how strongly he feels about one of  Monk’s greatest albums.

And when he spontaneously belts out a chorus of something-or-other at the top of his lungs while loping through Target, it’s always in tune.

So Ben’s definitely musical. And I am deeply thankful for that.

The parental task and challenge for me – arduous, and required, maybe especially on Fathers Day, is to avoid thinking about what his musicality would mean without the shackles of autism.

But if I have a philosophy of life, it’s that life is a re-frame. If the glass is half-empty, find a different glass.

Ben’s aptitude for appreciating and loving music will never put him on a podium in front of an orchestra or behind a drum set driving a band (like his dad’s younger days). Or even sitting at a gig, listening.

Those are “what if”s.

What IS, for Ben, is the pure joy he gets from music. The grin that appears when a favorite tune begins on the stereo, or a request for a certain disc is fulfilled, or a favorite ditty is sung to him, or a favorite ditty is sung BY him in McDonald’s at fortissimo…

There has never been a composer, conductor, drummer or songbird who loves music more than Ben.

That makes my own heart sing. And even without the card, there is no better gift on Fathers Day.

 

Why you should eat this s’mores ice cream

ice cream silver spoonsAt long last, a chance to enjoy ice cream without feeling guilty! This week Friendly’s Ice Cream introduced a new limited edition ice cream, and if you buy a 48-ounce carton to give it a try, Friendly’s will donate a portion of the proceeds to Easter Seals.

Friendly’s new S’mores flavor features toasted marshmallow ice cream with dark chocolate flakes and a graham cracker swirl. Y-U-M. They’re producing 9,500 cases of the s’mores ice cream flavor and will donate $1 from every case to Easter Seals. Based on the projected sales figures of this limited edition flavor, Friendly’s estimates that they will be donating $10,000 to Easter Seals.

For the past 34 years, Friendly’s has supported Easter Seals with its in-restaurant “Cones for Kids” campaign, but this new limited edition ice cream flavor is the first time Friendly’s has created a retail product that gives proceeds to Easter Seals.

So go ahead and enjoy some ice cream – it’ll make you feel good, and it’s good for us, too!