Our values create a community that is stronger together.
16 social sensations
Get to know Shane and Hannah Burcaw, Lolo Spencer and Glenn Moscoso—three social influencers who are making a difference!
25 right-to - repair: what it means for you Dr. Mark Schmeler sits down with us to talk about right-to-repair legislation and how it could affect the future of the CRT industry.
28 empathy + equality = accessibility
Steven Aquino weighs in on why accessibility is about much more than providing basic access to society.
A round-up of news items that spotlight disability representation in today's world.
Supply chain delays have disrupted our lives. We delve into three specific ways supply chain issues have disrupted the CRT industry.
Advanced technology and creative solutions are driving innovations across the CRT industry.
10 rolling along
A proposed bill in Pennsylvania aims to keep wheelchair users moving through regular maintenance.
13 best of the best
Help us shape the next issue of Let’s Get Moving by voting for the most accessible airline, best beach, most accessible city and MORE!
The NSM Consumer Insights Council is helping NSM drive innovation while creating a better customer experience.
Alaina Leary is a program manager at We Need Diverse Books and a children’s book reviewer for Booklist. Her work has been published in the New York Times, Good Housekeeping, Refinery29, Cosmopolitan, Teen Vogue, Washington Post, Healthline and more.
Chris Slavin travels the world with her service dog, Earle. Along the way they see great sites and make new friends.
Gabe Trujillo is a journalist and producer from Phoenix, Arizona. In 1997, Gabe became paralyzed after being diagnosed with Hopkins Syndrome. Now utilizing an electric wheelchair, he works as a Digital Executive Producer for 12News in Phoenix, and he can be found playing the wheelchair sport of power soccer.
6 heart to heart
Meet AGT ’s Ben Waites and Paralympic Gold Medalist Dan McCoy as they share how they’re bringing hope and strength to the world.
22 make way for the mighty pens
Supported by the University of Pittsburgh and the University of Pittsburgh Medical Center, the Mighty Pens sled hockey program is a force to be reckoned with.
Get to know more about the Gary Sinise Foundation’s vital work with veterans.
As a volunteer firefighter, Victoria VanValkenburgh was prepared for an emergency. She just didn’t expect it to happen while visiting a client as an NSM employee.
Steven Aquino is a freelance tech journalist based in San Francisco, CA, where he covers accessibility and assistive technologies. His work has appeared in TechCrunch, Macworld, The Verge, and more. Follow Steven on Twitter at @steven_aquino
In today’s fast-moving world, technology plays a vital role in every facet of our lives. From communication to mobility, technology connects us, informs us and keeps us moving.
In this issue of Let’s Get Moving, we will delve into all aspects of technology, from innovation and influencers to emerging technologies. This issue offers an opportunity to explore the role it can play in advocacy and ponder how it can play an active role in shaping a better future.
You’ll meet several people who are using their influence to make a difference in how the world views disability in this issue. Shane and Hannah Burcaw share a little about their daily lives—and how their YouTube channel is giving the world a glimpse of life as an inter-abled couple. Actress Lolo Spencer is focused on her message of living positively with a disability, while Glenn Moscoso, who runs the blog Wheelchair Daddy, is sharing his story as a dad who uses a wheelchair.
Columnist Steven Aquino weighs in on what accessibility truly means—and it’s more than providing access to society. We’re also taking a hard look at service and repair with Dr. Mark Schmeler and learning more about how innovation and technology shapes CRT equipment across the industry.
Technology may drive today’s world, but you, our readers, give it heart. I hope these stories of innovation and influence encourage and inspire you!
Editorial Buckley
Editor Mandy Crow Public
Content Development Alday Public Relations 305 Seaboard Lane, Suite 309 Franklin, TN 37067 615-791-1535 aldaypr.com
Creative Development 5by5 Agency 5210 Maryland Way, Suite 200 Brentwood, TN 37027 615-595-6391 5by5agency.com
Creative Direction Agency
Graphic Design
Abby Weeks
Let’s Get Moving is published by National Seating & Mobility, North America’s largest provider of comprehensive mobility solutions. Have a suggestion or interested in writing for the magazine? Send your ideas and writing samples to Mandy Crow, editor, at 305 Seaboard Lane, Suite 309, Franklin, TN 37067 or mandy@aldaypr.com.
Sincerely, Bill Mixon Chief Executive Officer, National Seating & Mobility Photo
National Seating & Mobility 302 Innovation Way, Suite 500 Franklin, TN 37067 nsm-seating.com
Permobil knows there is no one-size-fits-all solution for wheelchair users. Every individual needs the fit, accessories and style that works best for them. Just as you customize your chair, now you can choose which control options you use for your power assist device.
People are calling the newest option a "gamechanger." This summer, Permobil launched the SpeedControl Dial which allows you to start, stop and change your speed onthe-go. This ergonomic controller is easy to use, and setup takes less than five minutes. End users love this wired control option since it is powered directly by their SmartDrive – that means no need to charge two separate devices!
SmartDrive provides manual wheelchair users like you with more control over their experience. With a variety of wearable or wired control options, you can truly “power your push, your way.” You can even mix & match: an Apple Watch with a SpeedControl dial – definitely! SwitchControl button with a PushTracker E3 – sure thing. You can also use the PushTracker mobile app to personalize your SmartDrive settings such as speed, acceleration and control method, and fine tune your SmartDrive experience to fit your needs.
“ t HERE WERE MANY TIMES I SAID NO TO SOMETHING BECAUSE I DIDN’T FEEL LIKE I COULD. WITH SMARTDRIVE, I CAN GO SHOPPING, MEET A FRIEND FOR COFFEE, WALK THE DOG, AND STILL DO A TON OF OTHER THINGS WHEN I GET HOME,” SAYS JULIE M.
Permobil wants you to choose to do more like Julie! SmartDrive helps you achieve fewer pushes and conserve your energy for things that matter most to you. Want to know more about the clinical benefits of SmartDrive? Check out Permobil’s new White Paper on Power Assist Devices by scanning this QR code.
Start, stop, and change your speed on-the-go with our new SpeedControl Dial! This intuitive control option is ergonomically designed and ready to use out of the box, making it easier than ever to achieve fewer pushes! Scan to learn more!
we would like to thank permobil for sponsoring this article
In this issue, we’re highlighting the work of Rob Lins, an NSM assistive technology professional (ATP), who went out of his way to find a customer solution for a young client, Jameson. Here’s what Jameson’s mother had to say:
“For this new chair, Rob made special accommodations … to make Jameson’s foot box area soft and padded, created a one-of-a-kind custom padding solution for his hip area to prevent Jameson from being
injured from his movements, and even created a custom padded solution for under the tray of this new chair —after taking a note that Jameson’s legs kick up and down a lot and that he could get hurt without padding.
At the fitting appointment after the chair was delivered, Rob took so much time making sure every little bolt was where it needed to be, precisely adjusting the different parts of the chair to be sure it all worked with all the variable adjustments and drilled holes into the IV pole when I asked if it could change directions.”
Photos Courtesy of Apple
Apple previewed accessibility features available later this year with software updates across Apple platforms.
These include:
• Door Detection, a navigation feature on iPhone and iPad for users who are blind or low vision. The tool helps users navigate the last few feet to their destination, providing detailed information about the door location, type and more.
• Apple Watch Mirroring, which allows users to control their Apple Watch remotely from a paired iPhone, including assistive features such as Voice Control and Switch Control and allows for alternatives to tapping the Apple Watch display.
• Live Captions for iPhone, iPad and Mac for the deaf and hard of hearing community.
• Increased support for VoiceOver, Apple’s screen reader, with 20 additional languages and locales added.
Microsoft celebrated the expansion of the Microsoft Inclusive Tech lab, as well as several adaptive accessories, such as:
• Microsoft adaptive mouse, which can be customized to fit user needs;
• Microsoft adaptive hub, allowing users to replace or augment traditional keyboards with a central hub and wireless buttons;
• Microsoft Adaptive button, which can be paired with the adaptive hub and topped with a variety of button toppers (d-pade, joystick or dual button) to meet users’ specific needs.
Martyna Majok’s Pulitzer Prize-winning play, Cost of Living, made its Broadway premiere this fall at the Samuel J. Friedman Theater. Described by the Pulitzer committee as “an honest, original work that invites audiences to examine diverse perceptions of privilege and human connection,” Cost of Living focuses on the experience of two people with disabilities and their caregivers. Cost of Living opened on October 3.
Photo Courtesy of MTC
Photo credit: Gwen King / Unsplash
Photos Courtesy of Microsoft
Ben Waites “America’s Got Talent” journey may have come to an end, but the talented singer and ordained minister still has a lot of hope, joy and music to share with the world. Get to know him a little better with our 5 things to know!
Ben, who holds an interdisciplinary degree in music, communications and theater arts, regards his love for music as a calling. “At 10 years old, I had a salvation experience with God,” Waites says. “I felt a pull in my heart to become a singer.”
By the time he was 11, Ben was traveling and performing with his grandfather’s Southern Gospel quartet. He’s released a number of Southern Gospel albums and continues to perform and tour. Ben, who was born with Arthrogryposis Multiplex Congenita, currently lives in Nashville and works as a vocal coach.
It’s no coincidence that Ben’s audition song for “America’s Got Talent” was Cindi Lauper’s “True Colors.” When Waites began his musical training with his grandfather, Jim Waites, also a Southern Gospel musician, his grandfather feared Ben was tone deaf. When Ben learned to match the color he saw in his mind (a condition called chromesthesia) with the note his grandfather played, his musical skills grew quickly.
He met his wife through a karaoke app.
Ben met his wife, Natalie, through the karaoke app SMULE, which allows singers from all over the world to sing together and share those performances on social media. Ben frequently chatted with Natalie, one of his favorite duet partners, and soon they were communicating outside of the app. The couple celebrated their fourth anniversary in June 2022.
personal stories that inform , inspire and empowerHe thought the first invitation to audition for “America’s Got Talent” was spam.
After a video of one of Ben’s performances went viral on TikTok, he got an email from someone asking him to audition for the TV show. “I thought it wasn’t real, and I deleted it,” he recalls. The emails kept coming, so Ben checked out the AGT employee on LinkedIn. “I wasn’t sure I was interested,” he recalls, “but here was an opportunity to easily reach millions of people with the gospel, which was something I’d been praying for.”
Although Ben’s AGT journey has ended, he plans to keep performing and creating music. “Fame and fortune have never been my goal,” he says. “My goal is to share a message of hope, redemption and forgiveness through my music. I hope people get a sense from my music that no matter what they’ve done or not done or even how old they are, you can do whatever you want with perseverance.”
The first time Dan McCoy got on the ice to play sled hockey, he cried.
“I was 4 years old the first time I got on a sled, and I hated it,” McCoy recalls. “My pusher had bent down to tie her skates or left to help someone else, and I just started crying because I wasn’t moving.”
McCoy, who has spina bifida, soon learned to love the sport. He and his family first learned about sled hockey from a family friend who was involved with the sport. To support their son, McCoy’s parents played an instrumental role in starting Pittsburgh’s Mighty Penguins sled hockey program.
“When I was 8 years old, I told my parents I wanted to win an Olympic gold medal,” he says. “All credit to my parents, they were fully supportive. My mom was the first executive director, and my dad was the first assistant coach of the organization that is now the Mighty Penguins.”
After a few seasons on development teams, McCoy made the U.S. Paralympic sled hockey team in 2010 and achieved his gold medal dream in 2014. He currently serves as a trainer at the University of Pittsburgh Medical Center’s (UMPC) spina bifida clinic.
LEARN MORE about Ben at BenWaites.com
Photos Courtesy of Trae Patton / NBC
“People really relate to someone in their own situation,” McCoy says. “As soon as I tell them I have spina bifida, the barrier goes down. They feel more respected and like they’re talking to someone who really understands what they’re going through.”
McCoy is still active as a member of the Mighty Pens senior team, also serving as an assistant coach, captain and director of player development. He’s also building a business as a personal trainer, training people who have disabilities as well as those who don’t. He currently offers training in-person and online.
“I became a personal trainer so I could help people with disabilities see what they can do and, as best they can, not worry about what they can’t do,” he says. “People with disabilities have so much resolve to achieve what they want to achieve.”
LEARN MORE about Dan McCoy’s personal training business at danmccoyfitness.com. Read more about his involvement with the Mighty Pens on page 22.
I became a personal trainer so I could help people with disabilities see what they can do and not worry about what they can't do.
The Axiom AS and ASP both incorporate a patented self-adjusting fluid system that uses a rider’s body weight and physical characteristics to control the amount of immersion and envelopment within the cushion.
The cushion design allows for the femurs, trochanters, and ischia to be independently loaded, creating optimal pressure distribution and maximum stability. Once the desired fitting is achieved, the adjustment can be locked in. The fitting can be readjusted if needs change but refitting solely for maintenance is unnecessary.
Axiom AS and ASP utilize Hydrolite fluid, which is incredibly lightweight and less sensitive to temperature, so it maintains performance consistency regardless of climate. Surface tension is significantly reduced with our super 4-way stretch Lycra outer cover, providing better immersion. In addition, the patented design features a dense layer of reticulated foam under a layer of spacer fabric to allow superior airflow and moisture control. The result is an easily adjustable cushion with an ideal fit and a cooler, drier skin interface for the rider.
We recently chatted with Matt Berwick, president of the Western Pennsylvania Chapter of the United Spinal Association, about legislation he’s advocating for in Pennsylvania.
The Wheelchair Quality Insurance Act is currently under consideration in Pennsylvania’s House of Representatives. If approved, the bill would ensure that wheelchair users in the Commonwealth of Pennsylvania have access to two wheelchair well visits each year covered by their insurance provider, a benefit that is not currently provided.
Tell us a little about this legislation, where it stands and how it’s different from “Right-to-Repair” bills.
The Wheelchair Quality Insurance Act is a bill that Rep. Dan Miller from Mt. Lebanon put together working with us at the Western Pennsylvania Chapter of the United Spinal Association. The bill seeks to provide individuals in Pennsylvania with a covered benefit to have their wheelchairs evaluated on a six month basis, a lot like your dental cleanings. There’s nothing in the legislation that sets out how a supplier has to do it. The bill simply creates a covered benefit that provides you the option for a six-month maintenance check on your chair that insurance will pay for, whether the check happens in person or on the phone.
how a proposed bill in pennsYlvania aims to keep wheelchair U sers moving throUgh regUlar maintenance
If my supplier were to call me and ask, “How are your casters? How are your wheels and your backrest?” I would be able to tell them confidently if something felt a little wonky. This type of legislation would really help wheelchair users because we won’t have to think about the maintenance of our chairs anymore. Somebody else will be calling to ask about it.
How do you think a bill like this could help wheelchair users?
Think about it like a well visit for your wheelchair. We know that well visits increase the health of individuals, so if we have well visits for wheelchairs, it will prolong the lifespan of the chair and make it safer so people can get to work. I think that’s a big piece of it: once my wheelchair breaks, I can be out of work for four to six months waiting for the parts to come in. This bill is going to help wheelchair users maintain the level of activity they want.
Service and repair are vital components of the complex rehabilitation technology (CRT) industry.
Remember why you are advocating, Berwick advises.
“In Pennsylvania, this is something that we need,” he says. “This is something that will improve the quality of life for people with disabilities in Pennsylvania.”
Advocating can be nerve-racking, but remember that legislators “work for us,” Berwick says. “The laws they pass are supposed to better our states and our nation,” he says. “They need to make sure the bills they are passing are important to their constituents.”
Photo
In today’s world, every day brings news of a new shortage or production delay. We’ve scoured the shelves for everything from baby formula to toilet paper and watched as manufacturing and shipping delays have stymied the car industry.
The complex rehabilitation technology (CRT) industry hasn’t escaped these challenges. The CRT supply chain is a complicated, intricate system that involves organizations, people, activities, information and resources. So when something changes in one of those areas, it affects the rest of the supply chain.
CRT equipment is also highly customized, designed to fit the specific needs of each user. While some components of manual wheelchairs and powerchairs may be used in every chair, other components are more specialized. “This makes it hard for the entire supply chain to maintain service levels during these periods of disruption,” says Darren Lowman, NSM Chief Transformation Officer. Let’s take a closer look at a few shortages or issues that are having a direct impact on CRT orders and repairs.
Aluminum is in short supply.
Aluminum, a metal used in wheelchairs and a wide variety of CRT products as well as durable medical equipment such as crutches, walkers and canes, is in great demand. Intense workforce shutdowns in other parts of the world and rising energy costs have slowed production of the lightweight metal, creating a shortage of aluminum that’s affecting a number of industries beyond CRT, such as packaging, breweries and more.
There’s a shortage of semiconductor chips.
Semiconductor chips, sometimes called microchips, are used in countless consumer products, from cars to video game consoles as well as diagnostic equipment used by healthcare providers, such as ultrasound machines, CT scanning devices and more. They are also a vital component of power wheelchairs and power-assisted manual wheelchairs. With production slowed around the globe, the chips are in high demand and short supply, leading to longer lead times on CRT orders and repairs.
Logistical challenges are further stressing the supply chain.
Moving raw materials, components and products between locations is a major part of the CRT supply chain. While congestion at U.S. ports has begun to ease, transporting goods from place to place is still a challenge. Labor shortages have further exacerbated delays in production, shipping, repairs and more.
Through all of these challenges, new ways of thinking and doing things have arisen. At NSM, we have created new processes and improved our communications—and those improvements won't go away even after supply chain issues subside. “Our main focus has always been to ensure we meet our clients' needs so they can live life to the fullest.” Lowman says.
kick it up
Reebok is launching its first line of adaptive footwear, developed in collaboration with Zappos Adaptive.
The Reebok Fit to Fit collection includes features like zippers, heel pull tabs, extra wide options, removable sock liners and low-cut designs for enhanced accessibility. To create the shoes, Reebok enlisted the help of people with disabilities, medical professionals and others.
Learn more at Zappos.com.
all dolled up
Focused on diversity and inclusion, Mattel’s 2022 Fashionista line includes the first Barbie with a behindthe-ear hearing aid as well as a Barbie with a prosthetic leg, a Ken doll with vitiligo and Barbie and Ken dolls with a variety of body shapes and hair textures. The Fashionista 2022 lineup is available in stores now.
Photo Courtesy of Airbnb
Photo Courtesy of Mattel
Photos Courtesy of Reebok
HOW DISABILITY ADVOCATES ARE CHANGING THE NARRATIVE ON SOCIAL MEDIA gabePhoto Courtesy of Studio Twelve52
Vacation selfies, tortilla challenges and pink sauce. No, it’s not the beginning of a bad joke, it’s a list of just a few of the many things you can find on social media.
But beyond all of the viral trends and media, something incredible is happening.
Several social media influencers are using their online platform to help change the narrative about the lives of people with disabilities.
Shane and Hannah Burcaw are two such creators in this growing community. Known as Squirmy and Grubs on their YouTube channel, they are giving their audience an intimate look into their lives as an inter-abled couple.
Shane lives with Spinal Muscular Atrophy and uses his platform to show others that being disabled doesn’t mean you can’t live a successful, fulfilling life.
“Visibility and representation has come a long way in the last few years for disability,” Shane says.
Shane and Hannah’s path to becoming content creators and advocates began by accident, the couple says, after they uploaded a video of a road trip for family and friends.Since starting their YouTube channel in 2018, they have built a follower base of more than 946,000 subscribers.
“We were just documenting our lives,” Shane says about his early life on YouTube. “But now we had this new audience and suddenly we were like ‘OK, we have a platform now.’”
According to Shane, he and Hannah weren’t intentionally trying to normalize disability, but as the channel grew, they realized it could be a vehicle to advocate for the disability community while sharing their story. During their time together, the couple has shared insight into everything from traveling with a wheelchair to how their evening sleeping routine works.
And while those with disabilities are one of the largest minority groups in the country, channels like Squirmy and Grubs are most people’s only exposure to disability.
“We've definitely gotten comments from people, like non-disabled people saying that they've learned so much from our content,” Hannah says. “They had no experience with disability before.”
Photos Courtesy of Studio
Another one of those people sharing their everyday lives online is disability influencer Lauren "Lolo" Spencer.
As an advocate, model and actress, Spencer has amassed quite an online following. Her 58,000 Instagram followers and nearly 15,000 YouTube subscribers follow her adventures as a wheelchair user. Diagnosed with ALS at 14, Spencer now uses an electric wheelchair to navigate through her career and personal adventures. After earning a degree in TV production and wanting to rebel against a former employer who encouraged conformity, she branched out on her own and her YouTube channel was born.
“What am I good at and what do people want to know,” Spencer said when she talked about determining what her channel would be about. “Everyone always wanted to know, ‘How do you live positively with the disability.’”
As Spencer began sharing her life on social networks like Instagram, Facebook and Twitter, people began to see that a wheelchair user can live a fun and fruitful life. And then followers began commenting and asking her questions about disability.
“This content is bigger than me. It's bigger than just my own lived experience,” Spencer proclaimed. “And I should talk about more of what's happening than just partying and doing this and doing that.”
You can now find Spencer filming a new season of “The Sex Lives of College Girls.” The popular teen drama, created by Emmy Award-nominated writer/ producer Mindy Kaling and Justin Noble, is in its second season on HBO Max. Spencer will continue to promote disability awareness on social media.
Photo Courtesy of Lorene JanaeWhile Spencer offers unique insight into the entertainment world, another influencer is sharing his perspective on the world of parenting while disabled.
Glenn Moscoso is a 51-year-old blogger with cerebral palsy who’s using his online platform to share how he navigates fatherhood with a physical disability. At Wheelchair Daddy (wheelchairdaddy.com), Moscoso explores a variety of topics designed to educate and inform, ranging from posts about essential products for wheelchair parents of newborns to ideas about kid-approved adaptive activities kids and parents can share as well as general disability lifestyle content. The all-new from Rifton hits the this
While CP has impacted Moscoso’s speech and mobility, technology has allowed him to share his unique parenting perspective with a global audience for more than nine years.
“I like social media because I can reach a wider audience and therefore hopefully educate more,” Moscoso says. “The instant feedback and engagement are very interesting and engaging.”
“This content is bigger than me. It's bigger than just my own lived experience.”Photo Courtesy of Lolo Spencer
Moscoso added that online platforms like social media give him the chance to share short snippets of his life that can spur productive dialogues about disability. While the dialogues are changing constantly, he says deciding on what to post can sometimes be a struggle.
“I go back to why I started blogging and share what will foster the original purpose,” he says. “But it's always evolving and changing.”
Along with the content, Moscoso is sometimes hesitant to share his actual voice online but hopes to overcome that hesitancy.
“I have a speech impediment. I’m very self-conscious of how my voice sounds,” he states. “So I've been a bit hesitant about doing any reels or video. Hopefully, I'll get over that hesitation.”
For now, Moscoso continues to build his following online and share his unique perspective.
Those with disabilities continue to be one of the largest minority groups in the country and disability awareness is growing. With the help of people like Shane and Hannah Burcaw, Lauren Spencer and Glenn Moscoso, the narrative behind the disabled community will continue to normalize.
“I can reach a wider audience and therefore hopefully educate more.”
ACCORDING TO THE CENTER FOR DISEASE CONTROL, 26 PERCENT OF PEOPLE IN THE UNITED STATES HAVE SOME TYPE OF DISABILITY.
the nsm consU mer insights coU ncil is helping nsm drive innovation while creating a better cUstomer experience
For Kaity Ellis, joining the National Seating & Mobility Consumer Insights Council was an important decision.
"I hope what comes out of the council is society sees the people, not just the product," Ellis says. "Everyone has a different version of independence that should be treated with dignity and respect no matter what version of independence the person has."
Launched in 2021, the NSM Consumer Insights Council is composed of NSM clients and caregivers with personal experience navigating the CRT industry, unique knowledge
and a passion for the future of mobility solutions. Council members participate in quarterly virtual meetings focused on roundtable discussions around a variety of topics centered on the complex rehab technology (CRT) client journey.
“Insight gained from the council will fuel strategic direction and innovation at NSM,” says Bill Mixon, NSM CEO. “We launched the NSM Consumer Insights Council to better understand our clients’ needs and prioritize those needs to guide us toward client experience excellence. Delivering a best-in-class client experience is as important as delivering a safe and quality mobility product or solution that meets each client’s needs. While we are proud of our progress, we are always looking ahead to find new ways to take client service to the next level.”
NSM will use insights gained from the council strategically, allowing it to shape the customer experience as well as influence and drive innovation.
“At NSM, we are passionate about driving innovation in the CRT/mobility solutions industry,” Mixon says. “The individuals who comprise the NSM Consumer Insights Council share that passion and provide valuable, insightful input that helps us understand and prioritize our clients’ needs and create an excellent client experience.”
Driving innovation was a key reason Jason Price joined the council. “I hope that we see a new golden age of complex rehab equipment, a time in which manufacturing giants are held accountable both in terms of providing stock to the consumer as well as being truly committed to finding real innovations,” he says. “I believe NSM is key to making this happen, and I’m glad to be part of that partnership.”
calvan fergUson fargas tU man moore martha siravo stU man and lori stU man ermolik samantha good price kait Y ellis jennifer harrison Council members participate in quarterly virtual meetings focused on roundtable discussions around a variety of topics.
bY mandY crow
When John Fitzgerald gets on the ice to play hockey, he feels unstoppable. “When I’m on the ice, I don't think I have a disability at all,” says Fitzgerald, a member of the Mighty Pens sled hockey team in Pittsburgh, Pennsylvania. “When I’m on the sled, nothing’s there to stop me.”
Fitzgerald, who has cerebral palsy, has been a member of the team for three years. Using his dominant right hand, he “kayaks” down the ice and loves playing defense. When people find out that Fitzgerald plays hockey, they often ask who pushes him on the ice.
“Me,” Fitzgerald retorts with a laugh. “I push myself down the ice!”
Photo CourtesyFitzgerald’s sled hockey team is one of several adaptive sports programs supported by volunteers from the University of Pittsburgh and the University of Pittsburgh Medical Center. Ranging from wheelchair basketball teams to handcycling and other sports, physicians, professionals and students within the Department of Physical Medicine and Rehabilitation are dedicated to serving players and their caregivers.
“I was working with a resident who volunteered with the team,” Darrah recalls. “I went to one of the practices and that was my introduction to sled hockey.”
Very quickly, Darrah realized how beneficial adaptive sports are for the players and their families—emotionally and socially as well as physically. It’s something Dan McCoy, a longtime Mighty Pens player and a gold medalist in sled hockey at the 2014 Paralympics, understands very well.
Despite the benefits, adaptive sports can be expensive.
“A lot of the players have medical needs that necessitate a lot of doctors’ visits and mobility equipment and that’s all very expensive,” he says. “But ice time is also expensive—and so is the cost of the sleds, sticks and travel expenses.”
Dr. Shaun Darrah first got involved with the sled hockey team during his fourth year of medical school at the University of Pittsburgh. Darrah grew up playing hockey and jumped at the chance to volunteer with the sled hockey team.
“Adaptive sports and adaptive fitness help individuals with disabilities and their families to see that they can have a successful, happy life and do everything their body allows them to do,” said McCoy, now a member of the Mighty Pens senior team and a personal trainer with UMPC’s spina bifida clinic.
Recognizing this barrier, Darrah and his resident devised a plan for the Department of Physical Medicine and Rehabilitation to begin supporting the sled hockey team financially.
Most of the funds are raised through a charity game held each year, with the Mighty Pens players taking on the physicians. The event has been paused during the pandemic, but it’s something Darrah continues to look forward to.
"I look forward to planning and participating in the event every year,” Darrah says. “It is a great opportunity for us to get on a sled alongside the players and let them showcase their skills.”
Whether they’re playing recreationally or at the highest levels of the sport, players like Fitzgerald and McCoy love all the sport has to offer. “It’s a lot of fun,” says Fitzgerald, who also participates in axe-throwing and a variety of other sports.
“It helps people to see what else is there beside stand-up hockey.”
McCoy, who currently serves as assistant coach and the director of player development for the Mighty Pens senior team, agrees.
“When you’re on the sled and playing full contact hockey, it gives you a different perspective about what you can and can’t do,” he says. “Sled hockey players aren’t fragile—and it’s good for the players, spectators, parents and students to get that perspective."
Read more about Dan McCoy and his experiences as a Paralympic gold medalist and personal trainer on page 7 of this issue!
“Adaptive sports help individuals with disabilities to see that they can have a successful, happy life.”
“Sled hockey players aren't fragile... and it's good to get that perspective.”
The Jazzy® EVO 614 and Jazzy EVO 614HD provide outstanding performance indoors and out and are engineered with the capabilities that push boundaries.
The Jazzy EVO 614 offers a 300-lb. weight capacity (Group 2 Standard, K0822/K0823) and for the heavy-duty power wheelchair class, the Jazzy EVO 614HD has a 450-pound weight capacity (Group 2 Heavyduty, K0824/K0825).
Both power chairs feature 13.75” perforated drive wheels, front and rear independent Active-Trac® ATX Suspension with Mid-Wheel 6® Technology, a new memory foam seat and six color options.
** Jazzy® Power Chairs are FDA Class II Medical Devices designed to aid individuals with mobility impairments. HCPCS coding shown is pending PDAC approval.
we would like to thank pride mobility for sponsoring this article
Robin’s Egg Blue (matte)
Red (matte) Iceberg Blue (matte) White (matte)
Black (matte) Sugar Plum (matte)
bY alaina learY
Right-to-repair legislation is being considered in states across the country, aimed at allowing people to repair everything from electronics to tractors themselves without fear of voiding the warranty. Legislation recently passed in Colorado has extended the right-to-repair to include mobility equipment such as wheelchairs.
Recently, we spoke to Dr. Mark Schmeler, occupational therapist and associate professor at the University of Pittsburgh, about the complicated and multilayered issue. Here are a few of his thoughts about the repair and service side of the complex rehab technology (CRT) industry and how insurance providers, suppliers, clinicians and customers can work together to ensure mobility equipment lasts longer and can be repaired in a timely manner.
Can you sum up what rightto-repair legislation is and why some states are passing these kinds of laws?
It’s allowing a person, a consumer, to fix their own stuff, and not have to depend on a supplier or a repair shop to do it. It started with the iPhone, actually. People thought they should have the right to fix their own phone.
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When it comes to wheelchairs, there’s been a growing issue with equipment failing and needing repairs. Suppliers need to be attentive to the issue, but repair reimbursement is also a lossleader for the CRT industry because insurance reimbursements don’t cover the actual labor and parts related to the service. The CRT industry is also experiencing supply chain and labor market issues right now. Wheelchair users don’t have a lot of options when their wheelchair fails. For an ablebodied person, if your car broke down, you could always find an alternative way to get where you need to go whereas if your wheelchair breaks, you’re stuck at home. Wheelchair users are probably looking for a solution, but weren't getting it, so right-to-repair became an option that would allow consumers to purchase their own parts and replace them themselves versus having to go through an intermediary supplier.
What is missing from how we handle wheelchair and other mobility aid repairs now and what barriers does this cause for those who use mobility equipment?
I think the one thing missing is maintenance. When Medicare, being the nation’s largest payer of wheelchairs, creates a policy, most of the private insurance companies follow suit. The Medicare policy clearly says that they do not pay for maintenance. It further states in the policy that users themselves are expected to be able to do this maintenance. For the most part, you can’t put a blanket responsibility on a person with a disability to maintain their wheelchair.
I think we need to replace that policy with a policy or benefit that states something to the effect of, “We will pay for a six month check up on your wheelchair.” It’s not forcing people to do it, but rather making that option available to those who choose to do it and who are not in positions where they could do their own maintenance. It would be like your six-month dental checkup or doing regular maintenance on your car—you don’t have to complete these steps to continue your coverage, but the option is there and it will help minimize major issues from arising.
I think if we change policy to include maintenance and repair and make that part of a payment model, maybe more people will pay attention to it. If we move more toward a pay-for-performance model, you would pay a certain amount of money per year, and your health plan may choose to buy that maintenance coverage for you. When something goes wrong with your wheelchair, they connect you with the first available provider that can fix it. I also see an opportunity for new businesses and new ways of doing business that would mitigate some of these problems, like anticipating issues and taking care of them before a massive failure. Fundamentally, we have to all agree: payer, supplier, clinician, consumer. Chairs are not designed to never fail. They’re going to fail, but with regular preventive maintenance, like on your car, we can help prevent catastrophic failure.
How might right-to-repair legislation change options for wheelchair users and other mobility aid users?
Dr. Mark Schmeler is the lead investigator of a research project funded by the National Institute on Disability and Independent Living Rehabilitation Research. Read more about the project in “Finding a Better Way to Pay” at nsm-seating.com/blog
When most people think of accessibility, the images likely to be conjured up in their minds are people in wheelchairs or people who are blind using a cane.
This is classically and fundamentally true: accessibility has, and always will be, first and foremost about providing access to people with bonafide disabilities. Whether visible or not, the whole reason accessibility exists is to give the world’s largest marginalized group— over a billion people worldwide identify with some sort of disability —access to an inaccessible-to-them society.
But accessibility has so much more breadth and depth. And it isn’t merely for disabled people.
The scooters used by people with limited mobility and the elderly are accessibility. The subtitles in the Best Picture Oscar-winning film CODA are accessibility. The captions in your kids’ TikTok videos are accessibility. The list goes on. The subtitles exist in CODA because obviously not everyone speaks sign language; how else are audiences supposed to know what members of the Rossi family are saying? That the subtitles exist gives watchers access to the language.
Accessibility has so much more breadth and depth. And it isn't merely for disabled people.
ACCESSIBILITY IS RIGHTFULLY FOCUSED ON PROVIDING ACCESS TO SOCIETY—BUT IT'S ALSO MUCH MORE THAN THAT.
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Likewise, the captions on TikTok are useful if you have trouble understanding what a person is saying. The captions exist to give you another modality with which you can understand dialogue without solely relying on your hearing. Even more mundane things like the food processor in your kitchen is accessibility—because the machine makes quick work of food prep that would otherwise be time-consuming and/or laborious due to lackluster knife skills. The lesson here is that accessibility truly benefits everyone, regardless of ability. For instance, you needn’t have a medically-recognized condition to reap benefits from your phone or laptop having larger, easier-to-read text. Everyone likes text that’s easier to see.
The push for greater accessibility, in technology or otherwise, should always be about inclusiveness. Having diverse representation is one thing, but diversity rings hollow if, say, the wheelchair-using person can’t access a particular venue because there is a lack of adequate ramps. To be truly diverse and inclusive is to be mindful of everyone’s particular needs and tolerances. Otherwise, it’s just grandstanding.
In a nutshell, accessibility is about empathy and equality. It’s about abled people making affordances for those with disabilities because they care and they want the disability community to be seen and participate. Disability is not a failure of the human condition; it’s not something to be pitied and our bodies meant to overcome. Disability is simply part of the human experience, and disabled people deserve the opportunity to share their unique lived experiences with others.
Accessibility helps make that possible; without it, intentional or not, is pure exclusion.
The lesson here is that accessibility truly benefits everyone, regardless of ability.
FROM MOBILITY MANAGEMENT MAGAZINE
Invacare has been recognized by Mobility Management magazine in multiple product categories for outstanding product and technology development in complex rehab.
“We are pleased to once again be recognized for our industry-leading mobility products which deliver important user benefits. These awards are a testament to our culture of innovation and reflect our commitment to keeping our customers and end users needs at the forefront of our design process,” said Joost Beltman, Sr. VP & General Manager, NA.
Invacare’s leading mobility and seating products span a breadth of categories, with awards in the following categories:
A complete list of winners can be found in the Aug/Sep 2022 issue of Mobility Management magazine and featured on the brand’s website https://mobilitymgmt.com/ productawards
The Gary Sinise Foundation’s mission is clear: to support service members, veterans, first responders and defenders in need, as well as their families.
“For over 40 years, Gary has made it his life’s mission to serve those who protect and keep us safe at home and around the world,” said Jim Ravella, Vice President of Programs. “He established the foundation to give the American people a reliable and trusted way to help the men and women who serve our country.”
The foundation fulfills its mission through four pillars:
To qualify for a specially adapted mortgagefree home, the veteran’s injury must be post-9/11 and have occurred during combat, training or in theater. First responders injured while in service or in the line of duty can also apply. Veterans and first responders who suffered severe injuries prior to 9/11 and/or while off duty can be considered for the Foundation’s home modification program.
The acronym stands for Restoring Independence Supporting Empowerment —focuses on helping injured veterans keep moving forward.
“Our R.I.S.E. program provides specially adapted, mortgagefree smart homes for our most severely wounded heroes,” Ravella said, “as well as home modifications, mobility devices, and adapted vehicles to our injured, wounded, ill, and aging heroes.”
Since 2011, the Gary Sinise Foundation has built 79 smart homes for wounded veterans and first responders, modified or retrofitted 74 homes for those in need, adapted nearly 50 vehicles and provided almost 60 mobility devices.
This spring in Cumberland Furnace, Tennessee, retired U.S. Army SGT Bryan Anderson was surrounded by friends, relatives and neighbors who added personal messages to the foundation of Bryan’s soon-to-becompleted, specially adapted, smart home as part of the Gary Sinise Foundation’s "Walls of Honor" ceremony. The Foundation, along with key partners, is in the process of constructing his mortgage free home specifically built for Bryan, a triple amputee, that uniquely suits his needs.
Visit garysinisefoundation.org to learn more. To request assistance, fill out the form under “How Can We Help You?” at garysinisefoundation.org/contact
Innovative technology and creative approaches are driving equipment design in the world of complex rehabilitation technology.
In the complex rehabilitation technology industry, creativity and innovation are vital. Because each CRT solution is highly customized, finding the right fit for each CRT user requires a creative approach and an innovative spirit. New advances in the industry— driven by innovative technologies and a desire to continually improve—are making it easier to find solutions that fit specific user needs.
Standing in your power wheelchair is not a luxury and we should all be asking “Why NOT power standing?” Now available in both Group 3 and Group 4 base codes, Permobil’s F5 Corpus VS is now more accessible than ever and features fully programmable standing sequences. This means improved health outcomes and meaningful, everyday face-to-face social interactions are within your reach. Learn more at permobil.com.
• Find the perfect position with the most customizable standing sequences, including supine, semi-reclined, and sit-to-stand.
• Users experienced improved outcomes include increased daily independence, improved range of motion, pulmonary function, urinary function, range of motion and psychosocial function.
• Full range of power seat functions for both Group 3 and Group 4 models offer 14 inches of ActiveHeight seat elevation, 85-180 degrees of power recline, 0-50 degrees of power tilt and functional drive speeds in standing.
• The F5 Corpus VS Group 4 comes with additional benefits: 7.5 mph top speed, 2-year warranty, hydrographic accent options at no charge, and a preventative maintenance plan.
The Quickie Access solves multiple seating challenges while also allowing users to selfpropel. Its low seat-to-floor height makes it easy to access tables and desks, while the additional tilt and recline options offer clinically effective pressure relief. Learn more at sunrisemedical.com
• With a 12 inches seat-to-floor height option, the ACCESS provides the user the unique advantage to be positioned closer to the floor, enabling hand and foot propulsion.
• 25 degrees of tilt and 50 degrees of recline providing alternative positions for pressure management and helping to improve trunk posture, which enhances respiration, digestion, and function of other vital organs.
• Posterior tilt allows for ideal positioning for users with kyphosis, while -5 degrees of anterior tilt helps with easy standing and transferring.
Launching soon, the TRU-Balance® 4 Power Positioning System provides enhanced features, such as positional feedback actuators and anterior tilt, to further provide functional benefits to people who use power wheelchairs. TRU-Balance 4 will be available at launch on Quantum’s Stretto, Edge® 3 and 4Front® 2 power wheelchair bases. The system provides several features and benefits, including increasing the user’s visual field, more efficient and safer transfers and increased access to your environment. Learn more at QuantumRehab.com.
• Anterior tilt ranges from 10-30 degrees, promoting functional activities and increasing functional reach, while also helping with trunk and pelvic positioning for upper extremity function.
• Offers up to eight customizable memory seating positions and up to 49 degrees of posterior tilt.
• Making changing positions easy, TRU-Balance 4 Positioning Systems helpwith pain management, tone/ spasticity management and pressure redistribution.
• Users can drive up to 2 miles per hour when using up to 10 degrees of anterior tilt up to full lift.
Traveling is my favorite thing to do! Long trips, short trips—it really doesn’t matter. I want to experience the magic of our world and see all that it has to offer. I typically try to plan at least two big trips a year, even if I don’t always go somewhere new.
So how do I plan the perfect accessible trip without missing the good parts? Thank heaven for the internet and my phone. (And a little sense of adventure!) Here are a few steps I took recently when I planned a trip to San Diego.
When looking for a hotel in the States, it isn’t too difficult to find lodging with accessible rooms. However, not all accessible rooms are created equal—and not all hotels have very many. Once I find a hotel with accessible rooms, I call the hotel and complete the reservation over the phone. This ensures that I have the opportunity to ask a few questions, such as: What makes the room accessible to you? Sometimes the only answer is that it’s on the first floor, and that’s not enough!
What are the accessibility options in the bathroom? This question routinely leads to a few more, such as:
How wide is the door?
Is it a roll-in shower?
Is there a shower chair?
What accessibility options are there throughout the hotel?
I also always try to ask the hotel staff about the available amenities. Is there a lift for the pool and the hot tub? If the pool has a lock that you need to use your key to access, how high is the access entry? I use specific examples so I can make sure the staff clearly understands my needs.
Whether you’re traveling by ground or by plane, you’ll need to plan ahead. If you choose a rental car, hand controls can be added to any car—but the company will need to know at least seven days in advance. I usually call the company directly so I can describe the controls I need and detail where to place a spinner knob. When I fly, I travel with my manual wheelchair. For me that has been the easiest option. When you check your bags, you can ask the airlines to have someone help you through security and then push you to your gate. Employees are trained to assist you in transferring to an aisle chair to get on the plane and into your seat. I have learned that air travel often requires you to speak up and advocate for how you need assistance.
In the states, most museums and theme parks are accessible, but it never hurts to call the location or do a little research on their website before you travel. If you love the beach like I do, you want to be sure you can get as close to the water as possible. I have learned that most beaches have beach wheelchairs. When I go somewhere new, I usually do a quick internet search for where I can find a beach wheelchair. Typically, lifeguard stations will have them available to borrow on a first-come, first-served basis.
Wherever you want to go, remember that traveling is meant to be fun! With a little preparation, you can make any location work for you —and it’s always worth it.
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nsm loves seeing YoU r enth Usiasm aboUt prodUcts & experiences . share YoU r storY with Us todaY !
Christian Ostheimere shares his travels around the world in his TiLite chair with SmartDrive. inspire us every day!
Thank you Jonqualia, for sharing these great photos of Fendi with us!
“Fendi Prada got her power chair today... Big thank you to National Seating & Mobility. Y'all are amazing!"
We love celebrating our clients’ new found mobility!
“Thank you for my new independence. I've never been so grateful and optimistic for the future.” We’re thankful we can help keep you moving!
For years Sunrise Medical has worked to optimize tilt-in-space technology.
It can be utilized to provide positional changes required for pressure redistribution in clients who are unable to independently weight shift, to optimize postural alignment utilizing gravity to assist in maintaining seated positioning and to provide positioning to support essential digestive and respiratory functions.
In fact, the application for utilizing tilt-in-space technology is so expansive, there is increasing demand to provide support for those clients who desire to independently propel and navigate their environments. In response, Sunrise Medical is expanding its portfolio with the launch of the QUICKIE® ACCESS™.
QUICKIE® ACCESS™.
BETTER ACCESS TO LIFE.
The goal of the QUICKIE® ACCESS ™ is to address each clients seating and positioning needs while allowing individuals to self-propel, utilizing their preferred combination of upper and/or lower extremities.
indUstrY- leading low seat-to - floor height With an available 12" seat-to-floor height, the ACCESS offers the client the option for foot propulsion, while allowing clients access under tables and works surfaces within their environment.
pressU re relieving knee pivot tilt The ACCESS tilt positions clients in a stable and functional posture, while providing an effective pressure relief, offering up to 25° of tilt and 50° of recline.
anterior tilt The ACCESS offers two distinct tilt ranges, 0-25° and -5-20°. The option for anterior tilt can assist your client with standing, transfers, and functional reaching within their environment.
portable and dU rable At 32 lbs. with a folding backrest, ACCESS can be transported in a standard vehicle. Additionally, its aerospace aluminum-grade is resilient and capable of transporting up to 300 lbs.
we would like to thank sunrise medical for sponsoring this article
INDEPENDENT PROPELLING with the BENEFITS OF TILT
Last April, VanValkenburgh was on her way to a customer’s home for a stairlift evaluation.
“I had a little trouble finding the house at first actually,” VanValkenburgh recalls. “When I got out of my car, I could hear someone calling for help. I found my client on the garage floor.”
In full first responder mode, VanValkenburgh rushed to her client, asking a series of questions
—What’s your name? Do you know what year it is? Who is the current president?—anything to keep him conscious and talking. The client had fallen in his garage and was bleeding profusely after hitting his head.
As a volunteer firefighter and NSM Access Consultant, Victoria VanValkenburgh doesn’t expect her two jobs to intersect. But this past spring, VanValkenburgh found herself using her training as a firefighter to save the life of an NSM client.Photo Courtesy of Montreal Firefighter NSM ACCESS SALES REP, NEW YORK
All alone, he’d been lying on the garage floor and calling for help for more than 15 minutes before VanValkenburgh arrived.
“I immediately dialed 911,” VanValkenburgh says. “The fall had really taken a toll on him, and he had lost a lot of blood.”
VanValkenburgh continued to follow the 911 dispatcher’s instructions, eventually hanging up when the dispatcher notified her that EMS would be arriving in just a few minutes. That’s when the unthinkable happened.
“I realized that he was unresponsive,” VanValkenburgh says. “I did CPR on him for two and a half minutes and got him back right before EMS arrived.”
A second generation volunteer firefighter with seven years of experience, VanValkenburgh is well trained about what to do in an emergency. But until to perform CPR on someone during a real-life medical crisis.
“In the moment, I really had a lot of adrenaline coursing through my body,” VanValkenburgh recalls. “I was focused on keeping the blood flowing and later get his heart beating again, so reviving him was a release. The nerves and the emotion really kicked in after the fact.”
VanValkenburgh’s experience has a happy ending. The client was taken by ambulance to the hospital and made a full recovery.
As he was being loaded into the ambulance, the customer looked at VanValkenburgh and reminded her that he really did need the stairlift —so she rescheduled their evaluation appointment for the next week.
“If I hadn’t been CPR-certified,”
VanValkenburgh says, “we might have had a very different outcome.”
“When I got out of my car, I could hear someone calling for help. I found my client on the garage floor.”
“In the moment, I had a lot of adrenaline coursing through my body.”
When Earle, a handsome male yellow labrador retriever from NEADS: World Class Service Dogs, and I were matched almost seven years ago, I knew
I was getting a dog that was going to increase my independence in a world that is not always easy to negotiate with a physical disability. What I did not know was that I would find my Anam Cara.
Anam Cara , an ancient Irish term that directly translates as “soul friend,” describes the unique relationship between two souls that transcends this mortal world. It is a once-in-a-lifetime relationship that embodies communication, trust and understanding that allows each individual to become their whole self with complete acceptance and without fear. To become more than what is possible on one’s own. When I took the leash of a very chumbly, drooly and wise pup, I had no idea where he was going to take me.
Our first six months together were filled with the “getting to know you” bumps of any new partnership. But I also soon rediscovered my drive to get out into my community, even when it was physically difficult. I was happier, I had a desire to make sure that I was providing Earle with what he needed for a full and healthy life.
In those early months I also began to see the world through Earle’s eyes and witness his big lab heart touching each person he met. Earle is eternally optimistic, he is able to work with a joyful heart, be a patient listener, a non-judgmental teacher and is always willing to make a new friend. Earle seems to look at each moment as both an adventure and an opportunity to share love, he makes my path, and the path of others, smoother and more joyful. In the almost seven years we have been partnered, Earle has picked up my dropped keys or phone thousands of times, but his true work has been how he has taught me that the way we can get the best out of our limited days on this earth, is to share whatever gifts we may have with unabashed generosity, to find joy in the journey, and never turn down an adventure—or a snack. He is truly my Anam Cara, and I am so grateful for what he gives me each day.
bY chris slavin LEADING YOUR BEST LIFEHe has taught me that the way we can get the best out of our limited days on this earth, is to share with unabashed generosity, to find joy, and never turn down an adventure.
We understand what it takes to provide you with the freedom to have the lifestyle you deserve — one where you can go where you want, when you want.
It starts in the home. Ramps, stairlifts, and chairlifts are essential tools that restore your independence where you need it the most. ACCESSIBILITY
We embed it in everything we do. It's more than answering phones and fixing things — it's about being available and present when you need us.
