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It’s About What’s Possible
©2014 Invacare Corporation. All rights reserved. Trademarks are identified by the symbols ™ and ®. All trademarks are owned by or licensed to Invacare Corporation unless otherwise noted. Form No. 14-070 1401114
For more than 30 years, Invacare has provided the products you need to live life to the fullest. Stop by the Invacare booth to see the latest products available to help you do the things that are important to you.
For more information visit www.invacare.com or call 1.800.333.6900
4 TheMobilityProject.com2014 | The Mobility Project
the mobility project 2014 news
Convaid, manufacturer of specialized positioning, seating and mobility systems
for kids and adults, has launched a new Web site for consumers, assistive technology providers and clinicians.
The all-new Convaid.com, according to Convaid Marketing Communications Manager Elizabeth Harris, seeks to provide all visitors with an easy-to-navigate-and-use experience that also is more vibrant thanks to larger product photos and dynamic, colorful graphics.
The homepage gives visitors a bold over-view of what’s new with Convaid, such as the Carrot 3 car seat; Convaid’s rainbow array of upholstery color choices; and the Cruiser all-terrain Scout option for kids who love to roll off the beaten path.
Confi gure Your Own Chair atNew Convaid.com
Convaid’s navigation has been stream-lined into two horizontal rows at the top of each page. The main navigation bar, in blue, includes the three major groups of site visi-tors: Dealers, Medical Professionals, and Patients & Families. The secondary navi-gation bar, in gray, features Convaid’s tech-nology categories: Upright Wheelchairs, Fixed-Tilt Wheelchairs, Tilt-in-Space, Restraint Systems, and Wheelchair Accessories.
Once visitors land on a product page, they can view product images, read about product features and benefi ts, and do product comparisons to view specifi cations, sizes, etc., side by side.
Visitors get the chance to customize their own Convaid chairs via a virtual confi g-
The negative aspects of caregiving often make the headlines. Issues such as fatigue, burnout, stress and depression are some of the
most common problems associated with caregiving.A new study is helping to shift the negative outlook on care-
giving to a more positive one. In a report published in the current online version of the American Journal of Epidemiology, researchers at Johns Hopkins in Baltimore found that providing care for a chron-ically ill or disabled family member not only fails to increase health risk, but also is associated with a nine-month extension in life expec-tancy over the six-year period of the study. The study, which includes data on more than 3,000 family caregivers, suggests that those who assist a chronically ill or disabled family member enjoy an 18-percent survival advantage compared to statistically matched non-caregivers.
“If highly stressful situations can be avoided or managed effec-
Report: Caregivers Can Live Longertively, caregiving may actually offer some health benefi ts for both the care recipients and the caregivers, including reduced risk of death for those providing care,” says fi rst author David L. Roth, Ph.D., director of the Johns Hopkins University Center on Aging and Health. “Negative public health and media portrayals of the risk of family caregiving may do a disservice by portraying caregiving as dangerous, and could potentially deter family members from taking on what can be a very satisfying and healthy family role. Public discussions of caregiving should more accurately balance the potential risks and gains of this universal family role.”
So how can you help manage the stresses of caregiving? Author and Life Coach Yosaif August of yestolifecoaching.com shared tips for caregivers with The Mobility Project. Go to TheMobilityProject.com and use the search word caregivers. ●
— Cindy Horbrook
urator that enables them to add a transit option, choose positioning accessories, and pick the color for the chair’s base. They can then generate a quote for their personalized Convaid vehicle.
Throughout the site, high-priority action buttons are colored orange to be easy to fi nd and use.
The new site also features customer testi-monials, a consolidated contact form, and one of our favorite new bonuses: a pictorial History of Convaid page. ●
6 TheMobilityProject.com2014 | The Mobility Project
Wheel:Life Fundraising Book Can Make Great Things HappenYou’re looking to upgrade your everyday wheelchair, or you’re
a parent who knows a backup chair for your child would make a world of difference. You know you could benefi t from additional rehabilitation, or you want to fi nally launch your dream project.
What do all these ideas have in common? They need fi nancial support to get off the ground. When traditional funding sources can’t or won’t help, you might think about trying to raise the money your-self. But where and how should you start?
A new book from Wheel:Life can help.It’s called 10 Fundraiser Ideas to Help People with Disabilities, and it
features case studies of real-life successful fund-raising projects.Among the contributors to the book are Paralympian Bert Burns,
founder of UroMed (see page 12). Burns discusses how he raised funds to start his wheelchair racing career.
“Within the book, readers will discover brainstorming ideas for different types of fundraiser events to benefi t an individual with a disability who needs fi nancial assistance for medical equipment, phys-ical rehabilitation, adaptive sports equipment or daily medical needs,” says Lisa Wells, the book’s author and the director of Wheel:Life.
The book can be purchased as a Kindle download for $1.99, but people with disabilities can also request a free copy of the book by registering at wheel-life.org.
The fundraising book is just one of the many resources at Wheel:Life.
“Wheel:Life is an online global initiative that helps people fi nd answers to the questions and challenges that they have in using a wheelchair,” Wells says. “The goal of the resources we provide is to help people enjoy a full and active life, whether they’re using a wheelchair or not. We offer health and medical resources. We share research news. We offer educational resources. We do product reviews that are going to improve their quality of life.”
Even more valuable, though, is how Wheel:Life seeks to bring people together.
“We don’t just give out information,” Wells says. “We provide a community for people to meet new friends, no matter where they’re located, to assist with personal questions that they may have and to grow their own personal relationships that they may have with each other.”
Among Wheel:Life’s most popular features are the periodic free giveaways made possible by the site’s sponsors. A recent example: a decal that reads Keep Calm, It’s Just a Wheelchair. Stay tuned to Wheel:Life to see what other fun offers are planned. ●
© 2012 ROHO, Inc.
Introducing the
ROHO® AIR TECHNOLOGYfor Adjustable Support. www.roho.com
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the mobility project 2014 news
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Leslie Schneider puts her law degree to good use as the U.S. clinical & regulatory affairs manager at Ottobock, a world leader in orthotics, prosthetics and mobility manu-facturing. But Leslie, who lives in Minnesota, has also worked as a nurse, and her interest in medicine may have sprung from an accident she had as a little girl.
Today, Leslie volunteers as a peer mentor to people of all ages living with limb loss. She recently starred in an Ottobock-produced documentary called Limitless. Here, she describes what it’s like…
…To Adjust to Limb LossLeslie was just 6 when, on the fi rst day of summer vacation, she was hit by a truck while playing outside her home in New Ulm, Minn.
“When I woke up in intensive care, my mom, my dad, my grandma and grandpa were standing around the bed, and my mom told me about the accident,” Leslie recalls. “I’d lost my leg and she said they amputated, and that means it’s not going to grow back.”
Leslie received that news with surprising calmness. “I think at that stage of child development, kids say, ‘Oh, OK,’”
Leslie notes. “You just accept it.”Rather than spending her vacation at home, Leslie says, “I spent
the entire summer in the hospital, and I was in isolation for about four weeks because I had staph infections and a lot of revisions [additional surgeries]. I had to be NPO [not allowed food or fl uids by mouth] because I had to get anesthesia so they could debride my leg.”
Looking back at that time, Leslie now says, “That’s how my interest in medicine probably started.”
Still, being in the hospital was scary, especially decades ago, before more child-centered healthcare became the norm.
“My parents couldn’t stay the night with me,” Leslie says, citing strict hospital adherence to visiting hours. “My parents owned a restaurant, so my dad stayed home with my brother, and my mom got a room at a boarding house a couple of blocks from the hospital so she could be [at the hospital] every day. When I would change rooms, I’d always try to get a room that would face the boarding house so I could look out in the night and at least know that she’s out there.”
Leslie says her parents were “honest and forthright all the way through” about what was happening. “They didn’t really hide anything,” she recalls.
Those early childhood experiences, she adds, helped shape her
adult personality. “I think it really formed a lot of who I am, my independence.”
And from the start, losing her limb wasn’t going to defi ne who she could become.
“My goal was to get back to second grade,” she says. “I was not going to let this little accident stop me. I was not going to miss any school. And so I got back to school on the fi rst day with my little cane and my prosthesis. I was still Leslie, with my same classmates at the same school. I just happened to have a prosthetic leg. I was back into tap dances, back into Brownies, and back to all my friends.”
…To Mentor Others Who Live with Limb LossLeslie writes a blog (onelifeonelimb.com) and mentors others living with limb loss. Many people that Leslie works with are newly injured. But not all.
“In the last year, I’ve mentored a young woman — she’s 16 — who was born without her leg,” Leslie says. “Her experience is a little more similar to mine, being a child and growing up with limb loss. But being a teenager with limb loss is challenging. It wasn’t new for her, but adolescence is new to her. Any time we’re physically different, people tease you.”
One of the fi rst challenges, Leslie notes, is to build trust.“Just because we have this commonality doesn’t mean they’re going
to instantly put themselves out there,” she says. “Every introduction is a little awkward, and you have to feel it out about how forthright are they going to be, or how forthright I should be. I let them lead.”
Leslie says her skills as a nurse can help her to start by assessing the situation objectively.
“And then once they start talking, I go into ‘Me’ mode,” she explains. “’We’re peers: I have limb loss, you have limb loss.’ It’s not like we instantly become best friends, but I think so many people are so overwhelmed with questions and the unknown that I think there’s a lot of trepidation on their part.”
Leslie adds that she doesn’t give out legal or medical advice. Instead, she listens and then encourages her new friend to check with a medical professional, for instance, if a prosthetic is causing pain.
“I hear a lot of ‘Is it normal to have to wait for my pain medications?’ and ‘I’m getting a lot of phantom pain,’” Leslie says. She then suggests, “Talk to your doctor, talk to your nurse, talk to your prosthetist. If you’re feeling that you’re not getting what you need, talk to somebody.”
Regarding pain issues, Leslie says, “I absolutely say it’s not normal. You do have pain, especially post operatively or post amputation. But it’s manageable, and that’s what I know as a nurse. If it’s out of
Real Voices Tell Real Stories of Living Well with Disabilities By Laurie Watanabe
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TheMobilityProject.com 9The Mobility Project | 2014
control, speak up. “People I meet when they’re
getting fi t with their prosthesis or when they’ve had a prosthesis and it’s not working or not comfortable, that’s again when I say it is OK to go to somebody else. You have to speak up.”
The possible questions are infi nite, Leslie says: “’Do I wear my leg when I sleep? What do I do when I get up in the middle of the night and have to go to the bathroom? What do I do for work?’ It’s very much an open dialogue. Sometimes the family will be there, and family members will have a lot of questions.”
And mentoring relationships are ongoing, Leslie says, as people encounter new situations.
“I leave my contact information, because the questions don’t stop,” she says. “Some people I hear from right away, and with some people, nothing. Then six months later, I’ll hear from them. Especially here in Minnesota, maybe it’s summertime when I meet them, and suddenly it’s winter and they’re like, ‘What am I going to do about the snow? How am I going to walk across the ice? Nobody told me about this!’”
In a wider-reaching sort of mentor-ship, Leslie and her family recently starred in a documentary called Limitless, produced by Ottobock. The fi lm debuted in November 2013 at the ReelAbilities Disabilities Film Festival in Minneapolis.
“It was atypical of me to be willing to put my story out there,” Leslie says. “Like I said in the fi lm, it’s not that I hide the fact [that she uses a prosthesis] by any means. I just don’t think of it as a
defi ning characteristic of mine. And so when I fi nally came to the decision to go ahead with it, I thought ‘I’ve come full circle, living with limb loss and trying to pay it forward.’
“I can’t help thinking that somebody who is new to it might think, ‘What am I going to do? Is there a future for me or my child or my loved one?’ My story can show them: ‘This is just one person, but there is hope.’ That’s really why I did it.”
…To Love Shoes, Boots, Skirts & Dresses!In her Limitless fi lm, we see Leslie rocking a collection of above-the-knee skirts and a range of shoes, from ballet fl ats to sophisticated
Photo courtesy Leslie Schneider/Ottobock
10 TheMobilityProject.com2014 | The Mobility Project
black boots.“I wear skirts practically very day,” Leslie says. “I think I have one
pair of jeans.” She laughs. “I just hate pants!”But her fashion preferences also serve a purpose when she’s
meeting people living with limb loss.“When I meet women -- or even men -- I purposely wear a skirt
or a dress, and if it’s decent weather, without tights,” she explains. “And black boots in the winter.”
That fi rst impression can be eye opening, especially to newly injured patients accustomed to seeing, for instance, athletes with clearly visible prosthetic limbs.
“The trend in prosthetic wear is you see people without foam covers,” Leslie says. “You see a lot of the hardware exposed.”
In comparison, Leslie’s prosthetic is so realistic that it can be diffi -cult to tell it apart from her other leg.
Appearance is a common concern, Leslie says. She says that when meeting women who are newly living with limb loss, they’ll tell her, “I’m an accountant or a lawyer, I work in an offi ce, and I like to dress professionally. Will I still be able to when I get a prosthesis?”
Leslie says yes, though the process can be lengthy. “It took so long for me to get a pretty leg,” she says. “It wasn’t
until I was 16 that I got a leg that had the foam cover with the socket on the inside and all the hardware on the inside. I could not imagine not having a cover on my leg.”
Having a prosthetic limb she’s happy with is at least partially the result of working well with her prosthetist.
“I tell a lot of women, ‘This is what my leg is like, I have this cover,’ and they’ll say, ‘Your left leg looks exactly like your right leg.’ I demand perfection from my prosthetist. First and foremost, you want a socket that fi ts and is comfortable because without a good-fi tting socket, nothing else matters. If you’re not comfortable when you’re wearing it, you’re not walking. Once you get that and the componentry that works best for you, then it’s okay to say, ‘I want a
leg that looks like my other leg.’”When Leslie met with a survivor of the April 2013 Boston Marathon
bombing, “I started telling my story, and she looked at me like, ‘You’re an amputee?’ And I said yes, and she just started crying. She looked at my leg and said, ‘I just had no idea. All I’ve seen is all the hardware. I didn’t know I could have a pretty leg.’ Her mood just changed.”
It’s those vital questions that Leslie hopes to answer when working with people living with limb loss.
“I think a lot of what we see in the media are the Paralympic athletes,” she says. “We see the Wounded Warriors. And I have the utmost respect for athletes and Warriors without a doubt. What we don’t see a lot of are normal people, the people who, like me, just happen to be in an accident as a kid and have grown up with limb loss and try to make the world a better place.”
While Leslie understands why the media is attracted to elite athletes and courageous veterans, she feels concern for “ordinary” people “because they think, ‘What about me? I work in a hospital lab and happened to get hit by a drunk driver, and I still have to work for the next 20 years. What about normal people who happen to have limb loss?’”
The answer that Leslie hopes to convey: “It is kind of a roadblock to a certain extent,” she says, “but then life goes on.
“I’ve always taken an approach — unless it’s in peer meetings – that I never go up to somebody and say, ‘Hi, I’m Leslie, I have a prosthetic leg.’ I don’t say anything unless somebody asks me because I honestly don’t think about it. To somebody who’s new to it, that doesn’t make sense because how can it not be in the forefront of your mind?”
Leslie says she tells people newly living with limb loss, “I’ve had x number of years to live with this and to get used to it. And you will get to that point too, where it’s not the fi rst thing you think about. We’re humans fi rst: we’re females, we’re males, we’re mothers, we’re children, we’re sisters, we’re friends. So we think about those things fi rst — and then maybe we think about what is different later.” ●
living with limb loss
what it’s like:
Johnny Chao & Creating Accessible Living Spaces
It may sneak up on us: Door handles become harder to turn; lights look dimmer. Or it may occur suddenly after serious illness or
injury. In either case, the time comes when we need our beloved homes to support us much more than we’ve needed in the past.
The good news is that home builders and designers have taken note that all of us — aging Baby Boomers, adult children with aging parents, people of all ages with disabilities — would rather stay in our own homes than live in medical facilities.
Johnny Chao is a Certifi ed Kitchen Designer (CKD) with Designer Kitchens Inc. (designerkitchensoc.com), a home design/remodeling
company in Tustin, Calif. Johnny and his colleagues have decades of design experience and have heard it all when it comes to customers’ dreams for their homes. Here are four key points to keep in mind if you’re thinking of renovating your kitchen, bathroom or other living space to improve its accessibility.
Good Design Can Make a DifferenceNo remodel can alleviate all the physical challenges of a disability. But a good design can support the needs and activities of both the person with the disability and other family members or caregivers.
renovating your home
TheMobilityProject.com 11The Mobility Project | 2014
Johnny recalls working with a couple a few years ago: “The husband has MS and is in a wheelchair. Basically [his wife] has to wheel him around, get him out of bed, wash him. So when we did the remodel of the kitchen and the bath-room, we had to make sure it allowed her to bathe him, to do all the things she can do. She’s half the size of him, so it was really diffi cult for her before the remodel. We had to make sure that whatever we did would accommodate both her and him.”
Designs Should Look to the FutureYes, a home renovation will help you today. But the best home designs also anticipate future needs.
“Every client that we talk to wants some form of accessibility,” Johnny says. “We’ll have clients who say, ‘My dad just passed away, and my mom’s going to move in.’ Or older clients who say, ‘We want to plan ahead. We’re not moving: This is our one and only remodel, and we want to spend the rest of our lives here. We want to make sure that whatever we put in will still be valid and also will be able to accommodate what happens to us physically later on.”
That’s why your designer will consider not just conveniences and safety measures you need today, but also what you’ll need later.
“We always look fi ve years, 10 years ahead,” Johnny says. “What will the state of this particular space look like or function as fi ve years from now? Is your mom going to move in in fi ve years? In 10 years, maybe? Do we need to have the cupboards accessible, or have to have grab bars, for example?”
Accessible Product Choices Are Available“Typically, we tell clients that projects should be split into three phases,” Johnny says. “Phase one is design, product selection and
[specifi cations]. The second phase is ordering all those materials, fi nishing products, appliances if it’s a kitchen, plumbing fi xtures if it’s a bath-room, tiles, what have you.”
The third phase, demolition, ideally begins when the materials arrive, which reduces the “down time” of the area being renovated.
Is selection more limited if clients want their appliances, fi xtures, etc., to be accessible?
“In terms of materials, fi nished products, availability, options — it’s much lower than for standard items,” Johnny admits. “You might have more than 100 standard faucets. When you’re looking at full-access faucets, your selec-tion is going to shrink. You’ll be lucky if you have 10 to 20 percent to choose from.”
But universally designed and accessible products are available, and Johnny says delivery times are comparable to those of standard prod-ucts. Plus, having fewer choices “helps to keep focused on the project,” he says. “Sometimes when you have too many options, you can’t make decisions. It is frustrating that there aren’t as many options, but it makes it easier to address design issues and to keep going.”
Form & Beauty Still CountPerhaps the biggest fear about using universal design or accessible products is that the room will look “medical” or “hospital like.”
But Johnny says he generally asks the same questions of all clients: “What do you love and what do you dislike about your kitchen? We try to understand the diffi culties they have in the kitchen. Everybody’s different. If the person’s in a wheelchair, he might say, ‘I can’t reach my third drawer’ or ‘I can’t reach anything further than arm’s length; I can’t reach the back of the counter.’ So that tells me I cannot create a counter that’s too deep, or I have a limitation on height: Because of a shoulder injury, he cannot reach
Designer Meet & GreetA good relationship with your designer is crucial. Johnny
Chao, Certifi ed Kitchen Designer, says early in the renova-tion process, clients and their prospective designer will meet for an interview.
“It’s not just us interviewing them,” Johnny says. “They’re interviewing us also to make sure we’re compatible. It’s extremely important that whoever they hire as the designer be on the same page as them. For us to be effi cient, we have to understand where the client’s coming from. If we are not on the same page, then we will go through revision after revision. And after awhile, frustration will set in.”
Johnny says a renovation typically takes six months from that fi rst meeting to project completion — though that can vary by project size and complexity. That’s a big time invest-ment, so here are tips on making the most out of meetings with your potential designer:
• Do your homework. That used to mean tearing pictures out of design magazines. That still works, but so does searching for ideas online. Johnny says houzz.com is a popular site for consumers to post information about their projects, including product reviews. Also, have a budget in mind when you go to your fi rst meeting.
• Bring everyone to the table. Who will be using the living space? For example, if grandparents will spend a lot of time in the newly renovated kitchen, the designer might want to talk to them, too.
• Go with a pro. Johnny notes that the National Kitchen & Bath Association (nkba.org) offers certifi cations in kitchen and in bath design. “They are the authority when it comes to design standards for those two spaces,” Johnny says. “There’s a set of laws that we follow in terms of designing a space, and all of that incorporates universal design. Which is fantastic.” ●
Istockphoto
12 TheMobilityProject.com2014 | The Mobility Project
above a certain distance.” Johnny says designers don’t want to sacrifi ce form for function.“The important part is not to compromise the look of the space,”
he notes. “[Clients] should notice the conveniences we’ve built in for them, but it shouldn’t look like it. You’d have to look carefully to iden-tify those features, like a lower counter height or lower cooking area.”
Opportunities to improve accessibility and safety exist even when discussing such seemingly aesthetic topics as colors.
“If I’m working with an elderly couple, I might look for more contrast in colors vs. colors that tend to be more monochromatic,” Johnny says. “Even though people may be comfortable with mono-chromatic colors, you can’t separate the colors as well as you get older. It’s very diffi cult to see changes of planes, for example: steps and countertop edges. With a sharp enough contrast, you under-stand that this is one surface, and this is another surface. Or here is
When asked what a typical day in his life is like, Bert Burns fi rst mentions his family.
“I have twin sixth-graders, so fi rst thing in the morning, my wife Joy and I get them up, get them breakfast and off to school,” he says. “We do carpools with a couple of other people.”
Then it’s off to the garage, where Bert’s exercise equipment is set up. After putting in about an hour’s workout, “I get into the shower and then head into work.”
In the afternoon, “I usually take off a little early if I can, because the kids play soccer or basketball or tennis, depending on what season it is. My son plays football and baseball, and I help coach
both. Now he plays soccer, and I have no idea of soccer rules, so I just watch.”
On other afternoons, Bert — who founded UroMed, a urolog-ical supplies company in Suwanee, Ga. — can be found at the kids’ school, volunteering as a math tutor. In the evenings, “We usually all have dinner here together and work on homework together and put the kids to bed. And then my wife and I have some time together.”
Listening to his cheerful Southern drawl, it’s easy to imagine Bert shrugging at what a happy routine it usually is.
“It’s a pretty full day,” he says, “but pretty similar to everybody else’s day out there in the real world. I’m just doing mine from a chair instead of walking.”
“A Little More Time Consuming”Bert has been using a wheelchair for more than 30 years, ever since the car he was in was struck by a drunk driver who ran a red light. At age 20, Bert was a C6-C7 quadriplegic.
He did his fi ve months of spinal cord injury rehab at Lucerne Spinal Center in Orlando, Fla., which Bert says was a “model center” at the time. He was introduced to wheelchair sports during his stay and became an accomplished wheelchair racer and 1992 Paralympic gold medalist. Today, the workouts in his garage still consist of pushing his racing chair, on a set of rollers, for 12 to 15 miles per session.
In terms of the impact of his injury on his daily life, Bert says, “I use a wheelchair; I use hand controls in my car. Whenever we travel
the edge of the step, so I’m not going to fall over or trip.”Designers can also help by explaining the pros and cons of factors
such as fl ooring: “Tile fl oors — porcelain, ceramic or stone — are going to be durable,” Johnny says. “If you have a dog, the dog won’t scratch the heck out of it. But it is one of the hardest products on your legs. If you stand for 30 minutes prepping food, your joints are going to feel it vs. wood, cork or vinyl.” Tile is also relatively easy to clean, but its grooves can be jarring to wheelchair users or tricky for people who use walkers. That’s the kind of insider information that professional designers can offer.
“Every design that we do, there are going to be positives and negatives, advantages and disadvantages,” Johnny says. “Our job as designers is to tell you those things and let you make the decision as to which way you want to go. Because we don’t live in that space; you do.” ●
Bert Burns & Rolling Through Life
bladder & bowel management in a busy day
what it’s like:
renovating your homePh
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TheMobilityProject.com 13The Mobility Project | 2014
than having to scoop up a baby with my [quadriplegic] hands.”
Bert was also fond of taking the babies to the mall — sometimes both at the same time. After parking at the mall and changing the twins into fresh diapers in the car, Bert would load the kids onto his lap and off they’d roll.
Shoppers would do double-takes, wondering if the man who’d just rolled by was holding a doll in his lap
or a real baby. Taking the kids on outings provided great bonding opportunities, but Bert — by then a successful business owner and accomplished athlete with international credentials — did it for another reason, too: “To prove to myself I could do it.”
In 2012, the Burns family went to London for the Paralympic Games, where the kids “got to meet a bunch of athletes, some I used to compete with. They got to see wheelchair racing, and my son was like, ‘So that’s what you used to do, Dad?’ And I said, ‘Yes, sir.’ And he asked, ‘Did you win?’ And I said, “Well, sometimes I would, sometimes I wouldn’t.’”
Bert admits of his kids, “They’re 12 1/2 now and are starting to understand. I’ve always wondered if eventually they would be embarrassed that their dad’s in a wheelchair.”
During a winter trip to Orlando, Bert said William remarked, “Dad, being in a wheelchair isn’t all bad.”
William went on to list several “good things,” including better parking spaces and not having to wait in line so long at Disney World.
“That’s a good way of looking at it,” Bert told his son.That perspective, Bert adds, is what he shares with new wheel-
chair users who wonder how to cope with all the changes in their world.
“I tell folks it takes time,” Bert explains. “If you’re at my level of injury or below, if you’re a paraplegic, you could be 100-percent inde-pendent real soon, within a year. Things take a little longer, things will always take a little bit longer. Before I was injured, I’d get up in the morning, shower, shave, dress, get out of the house in 30 minutes. After I got paralyzed, that took two hours.
“But then it took an hour and a half. Then it took an hour. I fi nally got it down to about 30 minutes. Now that I’m getting a little older, it takes me about 45 minutes. But it doesn’t take much longer.”
Editor’s Note: Bert Burns is the senior market manager for UroMed. He also serves as an ambassador and customer advocate for Life After Spinal Cord Injury (facebook.com/LASCIonline), UroMed’s non-profi t motivational program. Headquartered near Atlanta, UroMed (uromed.com) is a leading provider of single-use catheters, urological and disposable medical supplies, including inter-mittent catheters, closed system catheters, condom catheters, pedi-atric catheters and continence care products. ●
somewhere, in any major city you can get a rental car with hand controls.”
He also uses urological supplies every day. “For my urological needs, I use what’s called a suprapubic,” he says. “It’s a Foley catheter that goes directly into your bladder. There’s a hole a couple of inches below your belly button, and the catheter goes in there and stays in there and drains into a leg bag.”
When it comes to his bowel regimen, Bert admits, “My fi rst few years sort of revolved around when I had to do my bowel program.” Today, though, he says, “My bowels are paralyzed, but I got enough sensation back to where I know when I need to go. So I can empty my bowels pretty well. That didn’t come back for 10 to 15 years, and it was a big thing when it did. I can go like everyone else can, just like normal, but I now can actually tell when I need to. That helps me not to have accidents.”
Bert learned bowel and bladder care while in rehab. “In the hospital I was learning to cath, but I didn’t have the hand function to catheterize real well, so they offered the option of having the supra-pubic so all I had to do was empty the leg bag once or twice a day,” he says. “I did have the hand function to reach down and unclamp the leg bag and drain that into a toilet.”
Bert adds that his hand function has since improved: “I can cath now if I needed to, but I’d have to have a bunch of operations to change back to a regular [catheter system]. So I keep what I’ve got, and it works real well for me.”
His bowel and bladder program doesn’t prevent him from doing what other parents are doing, which includes driving from home to work to wherever his kids happen to be practicing or playing that day.
“The big difference is everywhere I go, I have to take the wheel-chair apart, put it over the back of the seat,” Bert says. “When I get to where I’m going, I have to pull the wheelchair back out, put the wheels back on. And if I get the urge to have to go to the bathroom, it’s more time consuming for me. My house is better, but if I’m at work or at a baseball fi eld, I have to fi nd a restroom that’s accessible. Sometimes that can be kind of a pain, but it’s always worked out.”
“To Prove to Myself I Could Do It”Thanks to some creative thinking and planning, Bert was able to be just as hands-on when the twins, William and Emma, were born.
“We had a changing table made,” Bert says. “I could roll up under it and change diapers.” For the twins’ cribs, “We took a regular crib, put it on legs, made it higher so I could roll under it, then [put the side of the crib] on hinges so it opened like a door. I’d roll up under the crib, open the door, and slide the baby into my lap. It worked out great.”
The right clothing helped, too: “My kids wore overalls for the fi rst three years of their lives because I could reach out and grab an overall and pick them up and put them in my lap. So much easier
Photos courtesy Burns family
14 TheMobilityProject.com2014 | The Mobility Project
Ask healthcare professionals when a child can be given a power wheelchair, and you’ll get different answers,
especially from those not familiar with power mobility. But talk to parents, and they’ll note that rolling and crawling usually happen in a child’s fi rst year, with walking not far behind.
If those are the milestones for typically developing children, should it be any different for children with special mobility needs?
“We can remind ourselves as well as the families of the children with whom we are working that between three and 13 months of age, infants undergo three periods of profound changes in perceptual, cognitive and socio-emotional behavior,” says Sharon Pratt, a phys-ical therapist specializing in mobility.
Pratt points out “three signifi cant times of mobility development”: When infants start to reach (typically between 3 and 4 months of age); to creep (7 to 9 months); and to walk (12 to 13 months).
“Locomotor experience facilitates psychological development,” Pratt says. “With this in mind, children ideally should be allowed to meet recognized milestones, even if modifi ed.”
Maggie Love, an occupational therapist and clinical education specialist at Permobil, says of this important time in a child’s life, “While the brain has shown neuroplasticity throughout the lifespan, it is less able to change after critical periods of development have passed.”
Love refers to research (Stiles, 2000) that says active experiences are crucial for a child’s brain development.
“It is during this time that the brain is developing motor and
sensory neural pathways required for cognition and language devel-opment,” Love says. “Consequently, a moderate mobility impairment can cause impairments in language, vision and intellect.”
So mobility is more than just an accomplishment for a growing child; it’s also a way that children learn.
“Mobility helps with other skill acquisition,” says Jay Doherty, an occupational therapist, ATP/SMS, and regional manager for Quantum Rehab. “It also helps in prevention of learned helplessness, which is diffi cult to overcome once it has been established.”
When Is a Child Ready?But how do the grown-ups on the mobility team — parents, the child’s occupational or physical therapist and the assistive technology provider — know when a child is ready to try a power chair?
For a long time, clinicians thought a child had to have a solid understanding of cause and effect — I push this button, and my chair moves! But is that fair to expect of toddlers and infants?
While Doherty says understanding cause and effect is neces-sary for the child to understand that he is controlling his wheelchair, he says, “When we are talking about very young children, we have to be sure that the requirements are age appropriate. A 2-year-old may have an understanding of driving a power chair, but still requires supervision, as with any toddler.”
So Doherty would like to “see the beginnings of understanding that they are moving the chair through space. Other skills such as
Can Very Young Children Really Handle Power Wheelchairs? Experts Say Yes!
By Laurie Watanabe
Power Mobility: When’s the Right Time?
TheMobilityProject.com 15The Mobility Project | 2014
safety while driving will develop over time.”“As a therapist with much less experience with children many
years ago,” Pratt says, “I used to think that children would need to at least be able to use switches or joysticks with toys or computer-type devices fi rst. But I have since learned through experience as well as from reading others’ experiences and research that young children learn cause and effect and direction more easily in power mobility because it provides more sensory experience. In other words, allow the child to sit in a power wheelchair and develop their cause-and-effect skills!”
Always-advancing electronics can help young children with another power chair requirement: Having dependable and functional control over some part of the body that can be used to drive the chair.
“We have to remember that any part of the body where we can mount a switch can be used as an access point to control a power chair,” Doherty says. “I remember working with a little boy many years ago. He was 3 when I met him and he was very smart, but only had one consistent movement. I educated his mother and father that he could still drive a power chair with that one movement. They were surprised because they thought he had to be able to use his hand to control a power chair.”
Regarding other factors that can shape a child’s power mobility experiences, Love says, “Problem-solving skills, understanding spatial relationships and cognitive developmental abilities infl uence a child’s potential for successful independent power mobility; however, these very skills can develop through the use of powered mobility.”
And Pratt says, “I personally do not believe that there are devel-opmental or cognitive pre-requisites for young children and power mobility. I think it is way more important that we introduce the mobility to the child and their environment in a way that the child can immediately begin to manage it, because it is through the use of mobility/locomotion and discovery that development can progress.”
What If They Don’t Follow Directions?A common concern among parents is that infants and toddlers trying out power chairs don’t always obey directions such as “Slow down” or “Stop!” If a child can’t or won’t listen to grown-ups’ commands, is that a deal-breaker?
“I believe the child has to be safe in the wheelchair with supervi-sion,” Doherty says. “The basic ability to follow simple directions is important, but if more time is needed for them to develop this skill, I believe a longer trial period may be necessary.”
And Doherty says the mobility team should also keep in mind that no child always listens to Mom and Dad.
“I think back to my own children and how many times I told them to stop or slow down, and how often they didn’t listen,” he says. “It was an opportunity to ultimately teach them a lesson. We have to keep in mind that children who have a disability that has prevented them from moving through space have not had the opportunity to ignore an adult, and I believe this is part of learning independence. So, the child will need to learn to listen, but we can only do this if the
opportunity arises to teach them.”“If a child is unable to follow basic directions such as ‘stop’ and
‘slow down,’ that should not disqualify them from having access to independent mobility,” Love agrees. “There are plenty of typically developing toddlers who do not consistently listen to adult directives, even if the adult uses the child’s fi rst, middle and last name.”
Rather than just assuming that child isn’t yet ready for power mobility, Love suggests digging deeper. For instance, does the child have a behavioral issue? Is it hard to stop the chair quickly because of muscle spasms? Does the child have diffi culty understanding and acting on what he or she hears?
“Depending on the reasons, different interventions are warranted,” Love says. “Case studies have found that there are improvements in receptive language skills and overall development with access to powered mobility.”
And anyway, Pratt recommends against constantly lecturing a child who is just learning the joy of moving on his own.
“Children learn best through play and exploring for themselves,” she notes. “Too many verbal directions can be confusing, distracting and create fear. They are not like adults learning to drive a car, for example. At fi rst, children need a large, open, safe space where they can learn to control direction and just ‘explore.’ A great example is chasing balloons in an open, safe environment. Sometimes power mobility toys can be easier for very young children to experience the concept of locomotion with power at fi rst. Once children have learned to control direction and to stop in a safe environment, they are then most likely ready to progress to other places. It needs to be recognized when going through this experience that the young child needs to explore mobility fi rst, not ‘driving.’”
Power Mobility & WalkingTraditionally, power chairs have been issued to young children unlikely to ever walk. But could power chairs also benefi t children — such as those with Down syndrome — who probably will learn to walk, but will do so much later?
“Yes, absolutely yes,” Love says. “Introducing and assessing for powered mobility at an early age is worthwhile if you feel that the child will not be able to effi ciently ambulate in all age-appropriate environments before the age of 4. They should be considered for power mobility.”
And fi nally, parents shouldn’t worry that putting their child in a power chair might discourage the child from learning to eventually walk.
“I have heard from some parents that they are concerned that providing power mobility will slow down their child’s desire to ambu-late,” Love says. “However, the research says the opposite, that access to mobility may actually improve the child’s motivation to participate and use their trunks and hands to explore the environment.”
“Just because we are working with a child and power mobility doesn’t mean he or she has to give up on ambulation and standing activities,” says Doherty confi rms. “Many children need both.” ●
early intervention
16 TheMobilityProject.com2014 | The Mobility Project
product revuethe mobility project 2014
Rio Bath LiftRub-a-dub-dub, everyone in the tub! The Rio bath lift has a mod-ern, easy-to-clean design that
features smooth surfaces and an aluminum frame.
Installation is tool-less and can be performed by the buyer. A compact footprint makes the Rio easy to store or transport.
Invacare Corp. (800) 333-6900
invacare.comFoam-in-Place SeatingKids require seating systems that keep up with them as they grow. SunMate’s Liquid Foam-in-Place Seating is a quick and conve-nient way for mobil-ity providers to create custom-contoured foam cushion inserts that offer postural control and pressure relief.Dynamic Systems (855) SUNMATEsunmatecushions.com
APK2 Seat CushionThe Airpulse pressure sore treatment wheelchair seat cushion is battery powered and stimulates the user’s circulation by alternat-ing internal air bladders — working similarly to an alternating pressure bed mattress, but in a mobile package. It can be custom-ized to offl oad weight under an existing pressure sore so healing can happen while the wheelchair user is seated. The cushion can be made in any shape or size and has an unlimited weight capacity.Aquila Corp. (866) 782-9658aquilacorp.com
2000/2500 IPSFor kids on the go who need special support, the Integrated Position-ing System (IPS) provides built-in lateral positioning and features independently height-adjustable head pads or soft-padded headwings. Two sizes are available to fi t kids weighing from 20 to 130 lbs. and up to 5'6" tall. IPS model 2000 is certifi ed for air travel.Columbia Medical (800) 454-6612columbiamedical.com
Door OperatorPower to the people! The Open Sesame Model 100 door opera-tor enables its user to use a remote control to release and open a locked or unlocked door, while pausing to allow entrance or exit. Then the door returns to its locked position. Push the remote control again to keep the door open until you press the control to close it. The door remains free swinging for manual use.Open Sesame (800) 673-6911opensesamedoor.com
K300/M300 PS JuniorThese power wheel-chair bases — front-wheel (K300) or mid-wheel-drive (M300) — have 165-lb. weight capacities with plenty of growth built right in. Seat widths range from 11" to 16", while depths go from 5" to 18". Larger drive wheels and casters can handle all the places kids want to go, including grass, mulch, dirt trails and playgrounds. The bases have crash-tested securements points for car or bus rides.Permobil (800) 736-0925permobil.com
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product revuethe mobility project 2014
Cruiser with Scout OptionWhen the great outdoors call, the Scout package for the Convaid Cruiser is ready to answer! Disc brakes — like the kind on mountain bikes — plus knobby tires help the Scout-optioned Cruiser to handle many different terrains. There’s also built-in lumbar support and a 20° fi xed tilt at shoulder level to encourage stability and good posture.Convaid(888) CONVAIDconvaid.com
Stress-Free ShirtsCreated by a clothing designer whose husband has Parkinson’s disease, Mag-naReady shirts look like button-down dress shirts, but use magnets as closures so wearers can get dressed/undressed on their own. Men’s shirts are sized small to XXL; a women’s line is in development.MagnaReady (866) 635-8866magnaready.com
Unbreakable CupholderThis is how you roll! Diestco’s Unbreak-able Cupholder is made of 600x300 poly-ester to prevent shattering and has a draw cord with a lock to keep drinks upright and secure. It holds an array of containers up to 32-oz. sports drink bottles, and can be mounted vertically to your wheelchair’s armrest, or to the armrest’s front or side. DIESTCO Mfg. (800) 795-2392diestco.com
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product revuethe mobility project 2014
Aquila Corp. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18
Columbia Medical. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Diestco Mfg.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Dynamic Systems. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Invacare Corp.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
National Ramp . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
Open Sesame. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
Permobil. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20
Prime Engineering . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
ROHO Inc. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Advertisers’ Index
Editor Laurie Watanabe (949) 265-1573
Associate Editor Cindy Horbrook (972) 687-6573
Group Publisher Karen Cavallo (760) 610-0800
Group Art Director Dudley Wakamatsu
Director, David Seymour Print & Online Production
Production Charles JohnsonCoordinator
Director Marlin Mowatt of Online Product Development
National Sales Caroline Stover Manager (323) 605-4398
SECURITY, SAFETY & HEALTH GROUP
President Kevin O’Grady & Group Publisher
Group Publisher Karen Cavallo
Group Circulation Margaret Perry Director
Group Marketing Susan May Manager
President & Chief Neal Vitale Executive Offi cer
Senior Vice President Richard Vitale & Chief Financial Offi cer
Executive Michael J. Valenti Vice President
Vice President, Christopher M. Coates Finance & Administration
Vice President, Erik A. Lindgren Information Technology & Application Development
Vice President, David F. Myers Event Operations
Chairman Jeff rey S. Klein of the Board
mobilitymgmt.com
TRAThe newest member of TiLite’s titanium line takes the fl agship TR and adds the benefi ts of full adjustability. The new TRA features a dual-tube frame geometry that stiffens the chair and transfers more of each push stroke directly to the forward motion of the chair. The TRA is also “TiFit,” built to fi t just one person. TiLite (800) 545-2266tilite.com
REACHING THE STAFF
Staff may be reached via e-mail, telephone, fax, or mail. A list of editors and contact infor-mation is also available online at mobilitymgmt.com.
E-mail: To e-mail any member of the staff , please use the following form: [email protected]
Dallas Offi ce (weekdays 8 a.m. - 5 p.m. CT)Telephone 972-687-6700; Fax 866-779-909514901 Quorum Drive, Suite 425, Dallas, TX 75254
Corporate Offi ce (weekdays, 8:30 a.m.-5:30 p.m. PT) Telephone 818-814-5200; Fax 818-734-1522
9201 Oakdale Avenue, Suite 101, Chatsworth, CA 91311
Now there are more reasons than ever to visit your favorite mobility website!
TheMobilityProject.comAccess TheMobilityProject.com, a site created especially for wheelchair users, their families, friends and caregivers. Story and news topics include The Enabled Life, Accessibility & Travel, Seniors, Veterans, Sports & Recreation, and Families & Kids.
FOR THE PAST 50 YEARS, we’ve led the way in power mobility continuously developing innovations for our customers, whether it’s front-wheel, mid-wheel or rear-wheel drive. So join us as we take a moment to reminisce, and check out our full range of mobility solutions.
Permobil.com Scan here for a trip down memory lane.
