Disability in Advertising

life beyond wheels

IMAGE IS EVERYTHING: Disability in Advertising

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T11 paraplegic and three-time Mr. Olympia contestant Kris Dim shows off the power of upward mobility with the TEK-RMD at his new gym, Kris Dim’s Fitness Rock, in Sacramento, CA. Fitness Rock is Sacramento’s newest workout facility and has quickly become Northern California’s hot spot for serious bodybuilders.

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vmivans.com | 855-VMI-VANS CONTENTS VOLUME 27 NUMBER 271 April 2016

life beyond wheels

FEATURES

13 GLOBAL PERSPECTIVES What do Costa Rica, Croatia and Ukraine have in common? Wheelchair users fighting for visibility, reports IAN RUDER.

18 TRUE COST OF A WHEELCHAIR High-end power wheelchairs are critical for quality of life. Why are they so expensive? By BOB VOGEL.

37 STAYING FRIENDS Everything changes after a spinal cord injury, but friendships can still thrive. By STEPHANIE LOLLINO. Photo Courtesy of FacingDisability.com

ACCESSING AD LAND 26

From a Kleenex tearjerker about a man and his dog to a sweet Honey Maid offering of an aunt bonding with her niece, Ad Land has never featured so many wheelchair users. ALLEN RUCKER says it’s because advertisers want real people and that means wheelchair users, too. Also, TIM GILMER catches up with one of them — Mr. Wonderful.

Cover Photo by Pascal Demeester, provided courtesy of Nordstrom

DEPARTMENTS

4 BULLY PULPIT 33 UNITED SPINAL NEWS 6 LETTERS 44 PARA/MEDIC 8 NEWS 46 INNOVATIONS 10 SCI LIFE 48 ERVIN 32 SPOTLIGHT 52 CRIP BUZZ JCPenney BULLY PULPIT

life beyond wheels APRIL 2016

NEW MOBILITY IS THE MONTHLY MAGAZINE OF

PRESIDENT & CEO: JAMES WEISMAN VICE PRESIDENT OF PUBLICATIONS: JEAN DOBBS Engineering Healing EDITORIAL The current state of wound care is undergoing EDITORIAL DIRECTOR: JEAN DOBBS changes, in part because numerous wound Potential applications are many EDITOR: TIM GILMER care materials have fallen short. Some even and exciting for this new product. MANAGING EDITOR: JOSIE BYZEK bring about negative results — drying out, SENIOR EDITOR: IAN RUDER scabbing, or maceration (where too much post-doctoral fellows Don Griffin and West- SENIOR CORRESPONDENT: BOB VOGEL moisture from a draining wound enlarges the brook Weaver, along with researchers Dino Di making travel easy for individuals with spinalEDITORIAL cord disabilitie SUBMISSIONS:s wound perimeter). Fortunately, speaking for Carlo and Tatiana Segura, can be injected into [email protected] myself, I have found a systematic approach and a wound bed and easily made to conform to two wound treatments that I can rely on. its exact dimensions. The porous gel, made of In my March column, I reported on a shal- microcellular spherical particles invisible to the CUSTOMER SERVICE low yet dangerous wound I discovered on my naked eye, looks like a cream but lays down a Toll-free 800/404-2898, heel. I followed five critical protocols — elimi- scaffolding that encourages new skin growth nating edema, staying free of pressure and ext. 7203 and inhibits scabbing. infection, having adequate circulation and The soft gel hardens after being injected, eating more protein — and the wound healed then gradually degrades as new growth in one month. I also got help from using two ADVERTISING SALES grows through its porous micro-spaces to Unna boot wraps (see Para/Medic, Feb. 1, 2014) 718/803-3782 knit together. “Over time the hardened gel followed by a flexible silicon mesh dressing NATIONAL SALES MANAGER: solubilizes, falls apart and leaves the body impregnated with petroleum jelly (ADAPTIC). MEGAN LEE, EXT. 7253 through urine,” says Griffin. “The scaffolding is I changed each Unna boot dressing after AD MATERIALS: a support system for the body to do its heal- three to four days. The wound began to heal DEANNA FIKE, EXT. 7250 ing work. As a result, healing happens faster right away. Next, I applied ADAPTIC as a pri- because the body does not have to make its PRODUCTION mary dressing, along with a secondary gauze own scaffolding.” Because the gel is similar to PRODUCTION MANAGER: DEANNA FIKE pad to absorb moisture, and changed this commonly used materials and contains no bio- every three days. Three weeks later the wound logicals, it can be approved for use by doctors CIRCULATION had completely closed over. But the most serious wounds, admittedly, or wound care specialists after large animal CIRCULATION MANAGER: trials that are expected to take place in two to BEVERLY SMITH are more difficult. Complete wound healing often takes months or even years. Knowing this, three years. Mice trials have already demon- CIRCULATION COORDINATOR: strated rapid healing and less scarring. MARIA KURTZ a team of UCLA bioengineers and researchers have developed a gel made from microporous Potential applications are many and exciting POSTMASTER: Send address changes to New Mobility, 120-34 annealed particles (MAP) that promises to for this newly engineered product. For instance, Queens Blvd, #320, Kew Gardens NY 11415. Subscription rates: $27.95/year; $35.95/year in Canada; speed healing and reduce scarring when used the newly injured spinal cord attempts to heal $67.95/year international via airmail. to treat burns and chronic wounds. itself, but that process is short-circuited by scar- New Mobility (ISSN 1086-4741), Volume 27, Issue 271, is A common problem with non-healing ring after two weeks. Ultimately, the injectable published monthly by United Spinal Association, 120-34 Queens Blvd, #320, Kew Gardens NY 11415. wounds is fragility. Too often tender new MAP gel may be combined with stem cells or Copyright 2016, all rights reserved. Reproduction without other healing agents to spur new growth and permission of any material contained herein is strictly growth is either washed away, pulled off by prohibited. We welcome comments; adherent dressings, or aborted by scabbing. inhibit scarring in many soft tissue injuries — we reserve the right to edit submissions. The wound lingers and the danger of infection including the newly injured spinal cord. Periodicals postage paid at Flushing, NY and additional mailing offices. persists. The MAP gel, bioengineered by UCLA — Tim Gilmer www.newmobility.com

4 NEW MOBILITY CONTRIBUTORS

life beyond wheels APRIL 2016

CONTRIBUTING EDITORS Allen Rucker grew up in Bartlesville, Oklahoma, and went to MICHAEL COLLINS Washington University in St. Louis and Stanford. In the ’70s, he co- founded the pioneering video group, TVTV and in the ’80s he wrote MIKE ERVIN comedy with Martin Mull as well as others. In 1996, he became para- ROXANNE FURLONG lyzed at T10-12 via transverse myelitis. More recently, he has written RICHARD HOLICKY three books on The Sopranos, and a memoir of life after paralysis, The PRISCILLA MALTBIE Best Seat in The House. A longtime New Mobility contributor and colum- ALLEN RUCKER nist, he lives in Los Angeles with his wife, Ann-Marie. ROBERT SAMUELS ERIC STAMPFLI ELLEN STOHL Maureen Gazda remembers reading her first copy of New Mobility from BOB VOGEL her hospital bed in the summer of 1997. The 12-year-old competitive LOREN WORTHINGTON swimmer had just been thrown into the world of quadriplegia after diving into a friend’s backyard pool, sustaining a C5 incomplete SCI. Writing became her escape and she went on to earn a bachelor’s degree in English from The University of Massachusetts Amherst in 2007. She is beyond excited that her relationship with NM has come COMMUNITY PARTNERS full circle, from avid reader to contributing writer. KIM ANDERSON CHRISTIAAN “OTTER” BAILEY MARTY BALL Bob Vogel has a unique insider’s view of the complex rehab DME TIFFINY CARLSON industry. A T10 para, he was a pioneer of extreme adaptive sports in the late ’80s, which led to marketing a gig touring the country LAWRENCE CARTER-LONG working with a wheelchair manufacturer’s sales reps. He was a manu- RORY COOPER facturers rep in the mid ’90s and worked for a complex rehab DME JASON DASILVA dealer in the early 2000s. When he isn’t writing for New Mobility, he DEBORAH DAVIS spends his time sharing adventures with his teenage daughter, Sarah, TOBIAS FORREST and Killy, his German Shepherd service dog. JENNIFER FRENCH ALLISON CAMERON GRAY MINNA HONG MARK JOHNSON GARY KARP COMMUNITY PARTNER NANCY BECKER KENNEDY BRITTANY MARTIN LINDA MASTANDREA In 1979, as a result of employment discrimination during a temporary LYNN MURRAY disability, Tari Hartman Squire joined forces with other performers ASHLEY LYN OLSON with disabilities, including Alan Toy and Christopher Templeton, to spearhead the Screen Actors Guild Committee of Performers with SCOTT RAINS Disabilities. She then launched Media Access Office’s first casting TEAL SHERER clearinghouse of performers with disabilities and produced talent TARI HARTMAN SQUIRE showcases. Squire co-chairs National Disability Leadership Alliance’s MITCH TEPPER Employment Team and produces Lights! Camera! Access! 2.0 to REVECA TORRES improve disability portrayals, and increase employment in media. Her ANTHONY TUSLER company EIN SOF Communications specializes in disability-inclusive KARY WRIGHT diversity strategic marketing and employment.

APRIL 2016 5 LETTERS Wishing them a lifetime of love.

Best Wishes many of his clients with SCI who had some find what works, keep with it, and then all Happy for all the couples [“Weddings and version of this vibrator procedure done in his of the sudden, it stops. Usually I just need to Wheels,” February 2016]. Wishing them a office — for in vitro fertilization purposes — take some time off, give it a few weeks and lifetime of love. reported a pleasant side effect. Their spasticity then try again. The dysreflexia has gotten Jonnie Finley went away for 12-24 hours following ejacula- easier over time, but it is usually still there Via newmobility.com tion. I’m curious if anybody else has experi- to some degree. I can’t speak for all rela- enced this. Sure beats high doses of baclofen. tionships, but I gather from others and my How Can I Get on Trials? Roger Ellsworth own experience that your partner usually [Re. “Epi-Stim Opens Up Pleasure Pathways Berkeley, California wants/needs to see it [ejaculation] happen for Paras and Quads,” February 2016:] I’m a occasionally, just so that they don’t feel any T8 complete and have been for only a year Spasms Complicate Collection sexual guilt or greediness. I think to most and a half. I’m a 40-year-old single dad who The Viberect has gotten the job done for women, seeing it equates to sexual gratifica- lost my insurance after my accident. State me, a T6 para, with no autonomic dysre- tion. And while that is somewhat true, it will insurance wouldn’t pay for a wheelchair let flexia complications besides flushing of never be the same as it was pre-SCI. alone this procedure [epi-stim] — or physi- the face [“The Ejaculation Affirmation”]. I It would be interesting to see if down the cal therapy for that matter. How can I get on was an early adopter and they sent me a road, centers like Shepherd introduced this a list for this or any procedure? new and improved model in 2014 after in their sexuality classes. Kurt Lutz I pointed out the ineffectiveness of the Thomas Sessions Via newmobility.com original product. In using it for at-home Charleston, South Carolina artificial insemination, I’ve found the hard- The author responds: As I write this, est part is one not often talked about — Ali’s Broadway Success implanting epidural stimulators at the level “catching” the money shot. Ejaculation Yay, this just makes me happy [“Ali Stroker: of SCI is in very early stages of clinical tri- causes major spasms, which make “aiming” Bright Light on the Great White Way,” als. Only a few people have received these nearly impossible. And wearing a condom February 2016]. implants, which are being done via the decreases the likelihood of ejaculation. Jen Halbert Christopher and Dana Reeve Foundation Mark Demaris Via newmobility.com to Cure Paralysis’ “The Big Idea” project. The Stockton, California next goal is to implant devices into 36 more MS Curve Ball people, analyze and publish the results, That Primal Feeling Your story of being diagnosed is so close to and go from there. If you are interested in I thought your information on “electro mine [“An Unexpected Plot Twist in My Life.” becoming a participant, you can sign up nut busting” was good [“The Ejaculation I remember being in the neurologist’s office and get on a list of potential volunteers by Affirmation,” February 2016]. I was one of after having an MRI for severe and chronic going to victoryoverparalysis.org, scroll- the early posters in the thread and I am migraines and having her ask me, “What ing down to the bottom of the page and glad that it has reached so many males types of MS symptoms have you had so far?” I clicking the red button on the left that says with SCI and has seemingly helped many think my dumbfounded reply was something “Participate in Research.” achieve ejaculation. It is a huge mental like, “I came in for a headache.” I am also an Best of luck, and please keep us posted if aspect, especially being younger (I was 25 educator and starting to find that I can’t really you are able to receive an epi-stim implant. when injured). Not only does it help bring handle the demands of the job very well any- — Bob Vogel back that primal feeling, but it is healthy more. At 40 I am hoping I will find some sort for the prostate to flush the pipes out occa- of new career path that will allow me to keep Break from Spasms sionally, and it’s nice to have some time off working. Five years later I am still struggling Great article [“The Ejaculation Affirmation,” from spasms, even if for a few hours. with accepting this curve ball. February 2016]. I was discussing this option It does take time to “figure yourself out.” Amy Renea with a fertility specialist who told me that It can be extremely frustrating when you Via newmobility.com

6 NEW MOBILITY www f

New Mobility April 2016 Ad - AllTrack.indd 1 2016-02-22 11:10 AM NEWS

Greyhound Settles with DOJ over Department of Justice has also left that In addition to reimbursing disabled ADA Violation Claims number uncapped, saying that anyone passengers, the bus line will also pay Greyhound Bus Lines, the nation’s larg- who received unfair treatment because of $75,000 in civil penalty fines to the U.S. est bus company, has agreed to pay over their disability within the past three years is government. The DOJ has requested that $375,000 in compensation and penalty fines eligible to submit a claim and can contact a Greyhound report on its compliance prog- to settle claims that it repeatedly violated designated DOJ claims administrator. ress every three months. the Americans with Disabilities Act. The bus company has also agreed to — Maureen Gazda According to the Department of Justice, hire an ADA compliance manager to train Greyhound routinely disregarded numer- employees and contractors on important United Spinal Member Sues for Ferry ous ADA requirements, including “failing ADA practices such as accurate manage- Access to Statue of Liberty to maintain accessibility features on its bus ment of the fleet’s accessibility features. United Spinal Association member and fleet such as lifts and securement devices, “The ADA guarantees people with dis- employee David Heard, a wheelchair user, failing to provide passengers with disabili- abilities equal access to transportation filed a lawsuit in February against Statue ties assistance boarding and exiting buses services so that they can travel freely and Cruises, LLC, for its failure to provide safe at rest stops and failing to allow customers enjoy autonomy,” principal deputy assistant and lawful ferry access for wheelchair traveling in wheelchairs to complete their attorney general Vanita Gupta, head of the users, thereby violating the Americans with reservations online.” DOJ’s civil rights division, said in a state- Disabilities Act and New York State and As part of the Feb. 8 settlement, disabled ment. “Today’s agreement marks a major New York City Human Rights Laws. passengers who experienced discrimina- step toward fulfilling the promise of the Wheelchair-using tourists from all over tion or unnecessary barriers will be com- ADA, and we applaud Greyhound for enter- the world are among the 4.2 million people pensated $300,000 by Greyhound. The ing the consent decree.” who visit the Statue of Liberty every year.

People in the News: Joe Stone Fights to Stay in the Race

andcyclist Joe Stone has settled his disability dis- runners. He protested these requirements by participating with- crimination complaint against Run Wild Missoula after out registering and video recording a race volunteer telling him Hmarathon organizers agreed to allow handcycles and to either get off the course or “get up and walk.” Soon after the wheelchairs in the race with no restrictions. As part of the Jan. race, Stone filed a discrimination complaint against Run Wild 22 settlement, the organization agreed to pay Stone $13,000, Missoula with the Montana Human Rights Bureau. which includes his court costs, as well as have its staff and Stone considers the settlement to be a big step forward. board members undergo two hours of training on accommo- ”This is really the first case that’s gone this far when it comes to dating people with disabilities. inclusion in races like this,” he says. He wants Run Wild Missoula “I’m glad the Missoula Marathon is now to know people with disabilities are part of the going to be a truly inclusive race,” says community and need to be included in commu- Stone, a quad who lives in Missoula. “It’s nity events. “I hope this makes them realize that going to make a big difference in the way they can’t just say someone with a disability is a directors look at their races in the future. safety hazard,” he says. They’ll know it’s time to start including Tony Banovich, executive director of Run Wild people with disabilities.” Missoula, declined to comment on the specifics Stone says that although he was denied of the case. “We’re just happy to have the issue access to the marathon in 2013, Run Wild resolved, and we are moving forward with our allowed him to race in July 2014 — but only planning for the 2016 Missoula Marathon,” he said. if he obeyed a speed limit and yielded to foot — Mark Boatman

8 NEW MOBILITY The complaint states, “Tens of thousands believe that the ferry is in full compliance their mission statement reads. of disabled Americans who depend on with all applicable accessibility laws” and “Our primary message is that disabled wheelchairs for mobility — including many declined to take any steps to compel Statue people are tired of being an afterthought military veterans who were disabled in the Cruises to remedy the alleged violations. to the political establishment,” explains service of this country — cannot easily visit United Spinal had received multiple Beratan. “We are not the last special inter- the Statue of Liberty or Ellis Island, because notifications from wheelchair users iden- est you rattle off at the end of a laundry list defendant Statue Cruises, LLC (“Statue tifying accessibility problems on the ferry of constituencies — we are nation’s largest Cruises”), which holds the exclusive right to boats. As a result, plaintiff David Heard minority, and it’s time the politicians at every operate ferry boats to the Statue of Liberty visited the Statue of Liberty where he, level of our government paid attention.” and Ellis Island, does not make its ferry boats too, faced the same dangerous obstacles Taking place on Twitter before, dur- accessible for wheelchair users.” and difficulties using the inaccessible ing and after presidential debates, United Spinal President and CEO James ferry boats. #CripTheVote conversations allow disabled Weisman sent a letter last December to voters to voice their opinions and concerns the National Park Service that described #CripTheVote Lights up the Internet on such topics as unemployment, health- significant and dangerous problems As the 2016 election process heats care, housing needs and accessibility, just regarding wheelchair accessibility on the up, newly launched online campaign to name a few. “Disabled Americans deal ferry and requested appropriate changes #CripTheVote is lighting up the Internet with twice the unemployment rate that be made in order to comply with the law. as a way to bring awareness to disability nondisabled Americans do, we are more These problems included transition plates related issues in the 2016 presidential cam- likely to live in poverty, end up incarcer- and ramps that are at an unlawful slope, paign. Created by disability activists Gregg ated or experience violence. And much of gangways that are too narrow with unlaw- Beratan, Andrew Pulrang and Alice Wong, the nation’s housing and transportation ful handrails, and restrooms that are inac- #CripTheVote is a “nonpartisan campaign infrastructure is inaccessible to many of cessible and unusable. to engage both voters and politicians in us,” says Beratan. “Add to that an educa- In a letter responding to United Spinal, a productive discussion about disability tion system that treats us as second class the superintendent of the Statue of Liberty issues in the United States, with the hope citizens and we have a situation that is National Monument stated that “the that Disability takes on greater prominence long past needing political action. National Park Service and Statue Cruises within the American political landscape,” — Maureen Gazda

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APRIL 2016 9 SCI LIFE

By Tiffiny Carlson

A Life Changing Lift “Just because you We all know how long it can take to get dressed when you can’t stand up, have a disability, it which is why Pants Up Easy is one of those products that definitely belongs doesn’t mean you in the “Why hasn’t this been thought of before?” category. have to stop doing An original device not yet covered by what you love.” insurance, Pants Up Easy minimizes how Eric Saunders poses with a young fan. long it takes to get your pants up. The user backs up to either a free-standing or a wall-mounted unit and puts their arms over supports Back In a Different Kind of Saddle that clamp “The only difference between know,” he says about returning below their you and me,” says 23-year-old to racing. Mini sprint cars are armpits. This Eric Saunders to friends and perfect to be adapted for peo- allows just new acquaintances, “is that you ple with spinal cord injuries. A enough lift to put on sneakers in the morn- 600cc street bike engine is put elevate their ing, and I get in my wheel- into a smaller race car chassis, body, leaving chair.” This quote perfectly and each car is custom made their hands free exemplifies how Saunders has by its owner. to pull up their dealt with his 2010 motocross Since venturing out into the pants. crash that changed his entire mini sprint world as a paraple- The device world and introduced him to a gic, Saunders has noticed reportedly new sport he now loves. something very uplifting — his shrinks the time to accomplish the task Saunders, from Lakeville, colleagues accept him fully. to just seconds. Pants Up Easy is best Indiana, was a rising motocross “The other racers don’t treat suited for paraplegics and some low-level racer with big-name sponsors me any differently. They just quads. For pricing and more info, visit like Tony Stewart Racing and always tell me that they could www.pantsupeasy.com. Bass Pro Shop. Then came a never do what I’m doing,” he heartbreaking accident — he says with a grin. It took a cou- crashed on his backyard track a ple of years to excel at it, but in day before his 18th birthday. “It 2015 alone, he won six feature Serving Up Quad Realness was a jump I had done several races. But that’s not why he’s Ryan Atkins was living the so-called per- times before, but I somehow racing again — he has a higher fect life — 21, a junior honors student on landed sideways.” Welcome to purpose. a full-ride scholarship to the University of the world of T4-5 paraplegia. “My goal with racing is to Cincinnati — when he became paralyzed at Fortunately, being from show people that just because C3-4 in a car accident. Now 27, he went on a very active racing family, you have a disability, it doesn’t to graduate last December, works in com- Saunders was able to try out mean you have to stop doing mercial real estate and is engaged to be a new style of racing — mini what you love.” married in November. Read his motivation- sprint — with his family’s sup- Check it out: facebook.com/ al blog posts at www.flatonmyback.com. port after his injury. “It’s all I ericsaundersracing/

10 NEW MOBILITY

“ Not only has my iLevel made my life a little easier, it has restored some of my independence. Being able to elevate the chair has made it much easier to participate in conversations with less strain on my neck. I am also looking forward to attending sporting events where I will actually be able to see if others stand in front of me.”

www.ilevel.rehab • (US) 866-800-2002 • (CAN) 888-570-1113

/quantumrehab @quantum_rehab GLOBAL PERSPECTIVES: WHEELCHAIR USERS FIGHT FOR VISIBILITY BY IAN RUDER

When Alexandra Kutas asked her For Denisse Chavarria, the lack of “How many wheelchair users university professors those same ques- accessibility in Costa Rica has literally tions about their experience in Dnipro- slowed her roll, as the absence of acces- have you seen on the street in petrovsk in her native Ukraine, she was sible sidewalks forces her to regularly the last week? How many have met with silence. In the country’s third- navigate a two-hour gauntlet of pothole- largest city, with almost 1 million resi- strewn roads and unfriendly drivers in dents, none of her professors could think her wheelchair so she can attend therapy. you seen in the last year?” of another wheelchair user they had seen. For Ivan Sosa, Croatia’s physical obstacles Sadly, her experience is shared by pale in comparison to the outdated atti- epending on how big your city is millions of wheelchair users around the tudes on disability that he confronts ev- and how often you are out and world. While progressive laws and atti- about, your answers likely vary tudes slowly improve access and quality ery day in his quest to become a doctor. D In their countries they may be the vis- widely. But if you live in the United of life for wheelers in the United States States, chances are good that you’ve seen and other countries like the United King- ible few, but by sharing their stories, they at least one — and probably many more dom and Australia, progress toward hope to give voice to the marginalized — wheelchair users going about their equality rolls more slowly in many other and help bring about the changes needed daily lives in your area. countries, sometimes not at all. to empower other wheelers. Alexandra Kutas: Dnipropetrovsk, Ukraine

lexandra Kutas knew that wheel- birth and reliant on her wheelchair. She chair users in Ukraine faced an up- thinks Ukraine has the potential to em- Ahill roll long before her professors’ brace disability and accessibility, but lacks silence in response to her simple question the resources and impetus for change. about how many wheelchair users they “Unfortunately on the streets of Kutas says it’s tempting to move to a more disability-friendly country, but for now she has had seen on the streets of Dnipropetrovsk. Ukraine you can rarely see people in committed to working for change at home. A doctor’s mistake left her paralyzed since wheelchairs,” she says. “The problem is

APRIL 2016 13 so I decided to do my best to bring that ticians will do something, but right now about,” she says. “It’s my homeland.” the war is still going on, slowly,” she says. The revolution she speaks of, the Or- “It looks like the media and some groups ange Revolution of 2004, led to a revote are trying to change things, but the whole for the presidential election and was seen country is so inaccessible that it’s going to as evidence that democracy could exist in take time and lots of investments.” a former Soviet country. Kutas’ plan for a revolution of accessibility began to take shape as she wrapped up her undergrad- Fashion Modeling for Access uate studies at Dnipropetrovsk National Still, Kutas isn’t willing to just sit around University. She jumped on an assigned and wait for accessibility to come. When final group project as an opportunity to she failed to secure any funding for her devise a plan to improve access in the city project, she decided to do things differently. center. Knee deep in the heavy winter “I have wanted to be a fashion model snows, her team mapped out the loca- since I was 16 and I’ve had a lot of photo Poor accessibility means Kutas must rely on tions where ramps and curb cuts were shoots, so I decided to try to become a fa- friends and family to carry her up stairs and curbs, needed and then submitted a proposal mous fashion model and get attention for but she hopes to parlay recent media attention people with disabilities in the Ukraine that into better infrastructure in her city and country. for funding and applied for various Eu- ropean Union grants. She won best proj- way,” she says. “I figure it would be easier to ect, which helped propel her to a degree earn money to make the country more ac- mostly inaccessible infrastructure. ... If I in psychology, but the project didn’t have cessible with the help of the media.” need assistance, I can easily find people the impact she had hoped. No one would That may sound like a fantasy, but with who gladly help me. But it’s annoying be- fund the suggested improvements. her natural good looks and tenacity she has cause even though people react nicely, if I “Unfortunately we are having a war and made it a reality. She started out as a host- wanted to go for a walk, I would have to all of our politicians, if they don’t have the ess for Ukraine’s national fashion week. ask for help for every single sidewalk, so I money, say everything goes for the war,” she On the first day she met Andrey Sarym- usually don’t walk alone.” says. She had hoped the mayor would adopt sakov, a photographer who expressed in- Growing up, Kutas relied on her par- her project as part of his election campaign, terest in working with her. One successful ents and friends and the opportunities “but they said it was too expensive.” session later, the two felt confident they they provided. “I’m really blessed for The war with Russia, which started had the makings of a good exhibition. The my parents helping me,” she says. “The two years ago, has drained resources and exhibit, entitled “Break Your Chains,” was country is still not accessible at all. To get left many soldiers and civilians with new picked up by a museum in Kiev and shown around I need my own personal driver be- disabilities. Kutas is optimistic that dis- during fashion week. “It was a big deal because transportation is not accessible and ability and accessibility will soon find cause no one had ever had an exhibition the city center doesn’t have curb cuts.” their time in the spotlight. of a fashion model who uses a wheelchair When she attended university, she relied “Hopefully, after everything ends, poli- in Ukraine,” she says. The show led to an on friends to carry her up four flights of stairs to her classes. The building had no elevators and she was the only wheelchair user asking for improvements. Kutas had little to compare the lack of access against, but as she traveled abroad with her family, and later alone, her eyes opened. “When I started to travel around Europe, I began to realize places can be accessible,” she says. “I fell in love with all the accessible trains and buses that allowed me to get around cities independently. Obviously, accessibility in Europe differs from country to country, but it’s better than Ukraine most of the time.” With that realization, Kutas found herself facing a stark choice. “My first thought was maybe I should move, because it’s really, really difficult to live in Ukraine since not much is accessible, but “Break Your Chains,” a collaboration between Kutas and photographer Andrey Sarymsakov, was after the revolution I started to believe that exhibited during fashion week in Kiev. “No one had ever had an exhibition of a fashion model who it is possible for my country to change, uses a wheelchair in Ukraine,” Kutas says.

14 NEW MOBILITY article in the United Kingdom’s Daily Mail ing connections and learning how she can has learned that being first isn’t always a bad and an influx of local and national atten- help improve access in Ukraine. During thing. “It has been interesting and fun and tion. “It was great because I could talk her stay she contacted the U.S. embassy really difficult at the same time,” she says. about my project and the importance of about bringing her show stateside and was making cities more accessible.” a guest on John Hockenberry’s Public Ra- Kutas recently visited the United States, dio International show, The Takeaway. She where she spent much of her time develop- is committed to bringing about change and Denisse Chavarria: San Jose, Costa Rica

Although injured more than two years ago, Chavarria just got a chair in January that she can use independently.

he absence of wheelchair users on the streets of San Jose, Costa Rica, Tis more than just a talking point for life to the fullest,” she says. “They treat Chavarria faces a chicken-and-egg situa- Denisse Chavarria. Until January, she me like garbage here.” tion; she wants to work to earn money to was a prime example of the country’s of- Prior to her injury, Chavarria taught pay for her own needs and supplies but ten hidden wheelchair-using population, kids with disabilities and yearns to get back lacks the supplies and resources to get as she lacked a wheelchair she could use to work, though she is unsure if she can lo- and hold down a job. “I just want to teach, independently. Two and a half years ago a gistically. “Right now I can’t even write, so but I need money,” she says. surgery to fix Chavarria’s aneurysms left how am I going to teach them?” she asks. This January, Chavarria’s goal grew her a C3-7 quad. She has spent the ma- She has seen many of her friends with dis- closer when a friend’s crowdfunding ef- jority of her time since then in the three abilities get repeatedly rejected from jobs forts netted her a new Permobil F5, her accessible rooms of her parents’ house, and says discrimination is rampant. dream chair and her first chair she can relying on others to push her around in a “It’s like people with disabilities are use independently. She traveled to Flor- medical transport chair. seen as not worthy and unable to do any- ida to pick it up and marveled at the dif- “When I got out of the hospital, the thing,” she says. “People see me in my ferences in her surroundings. doctors told my mom I would be able to wheelchair and they go up to my mom “I saw that everything was accessible,” move out after a couple of months. Those and ask, ‘Can she speak?’” she says. “It was awesome … and then I were the two longest months in my life. She laughs off the question. “Oh my got back here to Costa Rica and it was I’m still waiting,” she says. “When you god, I speak a lot!” disappointing getting back to reality.” get out of the hospital they transfer you To keep her mind active, Chavarria Chavarria’s first trip to the hospital in to a rehab center for one month. If you works part time for the local university, her new power chair provided a stark re- start doing something new, they give you but doesn’t even make enough to pay her minder of the distance Costa Rica has to more therapy, but if you stay the same, phone bill. Money is a real issue. go before wheelchair users can enjoy any- they tell you that they’re not going to give Chavarria receives a disability pension thing close to a level playing field. you more therapy because you are not go- through Costa Rica’s Social Insurance “When I got to the hospital, the doctors ing to improve anyway.” program, but says, “Social Insurance will and nurses seemed surprised to see me Chavarria says that attitude is emblem- not help me with a wheelchair, it won’t in my big wheelchair. Power wheelchairs atic of the Costa Rican medical commu- help me with my catheters, it won’t do are pretty expensive, and without gov- nity’s regressive approach to spinal cord anything. My parents have to pay for ev- ernment help, very few people get them,” injury. “I tried to tell them that the rehab erything. That’s pretty hard because we’re she explains. “It should be the other way and therapy is not necessarily for me to not rich, and even if I was rich, there’s no around, where everyone who needs one move or walk again, but for me to stay way to buy all the things I need.” has a wheelchair, and doctors and nurses in shape and learn and be able to live my With very little government support, are shocked when that doesn’t happen.”

APRIL 2016 15 Ivan Sosa: Rijeka, Croatia

The Safe, Practical Theand Safe, Convenient Practical way to The Safe, Practical andtravel Convenient wherever way and to and Convenient way to travelwhenever wherever you want. and travel wherever and whenever you want. van Sosa has had plenty of time to think school in Rijeka, Croatia, and was about to whenever you want. No more worries about about the obstacles facing people with start his internship. Instead he found him-

Nohaving more accessibleworries about Idisabilities in Croatia in the 12 years self in rehab at the start of a journey that No more worries about havingfacilities. accessible since he suffered a cerebellum injury that would expose him to the sometimes-ugly facilities.having accessible affected his speech and left him using a side of a country undergoing rapid change. facilities. “Most people are not malicious,” Sosa says,  Different models to meet “but they see disability as a personal problem, wheelchair much of the time. When Sosa “It’s a pretty interesting perspective  Different models to meet specific needs! rather than a social issue.” was injured, he had completed medical because we are a developing society, and  specificDifferent needs! models to meet “GO-ANYWHERE” Chairs  Simple to assemble; no “GO-ANYWHERE” Chairs  Simplespecific to needs!assemble; no TheThe Safe, Safe, Practical Practical tools required. andand“GO-ANYWHERE” Convenient Convenient way way to to Chairs  toolsSimple required. to assemble; no The Safe,traveltravel Practical wherever wherever and and Convenient and  Safe and easy to use. way towhenever travelwhenever wherever you you want. andwant.  Safetools and required. easy to use.  Seat and footrest heights whenever you want.   SeatSafe and and footrest easy to heights use. NoJust Nomore more worries worries In! about about Awarded VA Contract V797D-30180 are adjustable. No morehaving worrieshaving accessible aboutaccessible having Mobility  areSeat adjustable. and footrest heights facilities.facilities.  Casters have “total-lock” accessible facilities.  Castersare adjustable. have “total -lock” Solutions brakes.  Different Different models models to meet to meet  brakes.Casters have “total-lock” • Different modelsspecificspecific needs!to meet needs! specific  Lightweight and durable, needs!  “GO-ANYWHERE”“GO-ANYWHERE” Chairs Chairs  Lightweightbrakes. and durable, SimpleSimple to assemble; to assemble; no no “GO-ANYWHERE” Chairs high-quality aircraft-grade • Simple to toolsassemble;tools required. required. no tools  high-Lightweightquality aircraft and durable,-grade  Safe Safe and andeasy easy to use. to use. aluminum. required. aluminum.high-quality aircraft-grade  Seat Seat and andfootrest footrest heights heights  Compact, convenient, and • Safe and easyare adjustable.are to adjustable.use.  Compact,aluminum. convenient, and  Casters Casters have have “total “total-lock”-lock” PORTABLE! • Seat and footrest heights are  PORTABLE!Compact, convenient, and brakes.brakes.  Won’t Rust or corrode; adjustable. Lightweight Lightweight and anddurable, durable,  Won’tPORTABLE! Rust or corrode; high-high-qualityquality aircraft aircraft-grade-grade easy to clean. • Casters have “total-lock” brakes.  easyWon’t to Rustclean. or corrode; aluminum.aluminum.  Virtually maintenance- • Lightweight Compact, andCompact, durable, convenient, convenient, high-quality and and  Virtuallyeasy to maintenanceclean. - aircraft-gradePORTABLE!PORTABLE! aluminum. free.    free.Virtually maintenance- • Compact,Won’t convenient,Won’t Rust Rust or corrode;and or corrode;  Cushions are available in easyeasy to clean. to clean.  Cushionsfree. are available in PORTABLE! (3) colors and remove  Virtually Virtually maintenance maintenance- -  (3)Cushions colors and are remove available in • Won’t Rustfree. orfree. corrode; easy to clean. easily for cleaning.  Cushions Cushions are availableare available in in easily(3) colors for cleaning. and remove • Virtually maintenance-free.  Optional accessories (3) colors(3) colors and andremove remove 30-Day  Optionaleasily for accessories cleaning. • Cushionseasily areeasily available for cleaning. for cleaning. in (3) colors include: wheeled custom  Optional Optional accessories accessories Risk-Free  include:Optional wheeled accessories custom and remove easily for cleaning. travel bag, positioning include:include: wheeled wheeled custom custom Trial travelinclude: bag, wheeled positioning custom • Optional accessoriestraveltravel bag, bag, positioning include: positioning belts, slide-out commode belts,travel slide bag,-out positioning commode wheeled custombelts,belts, slide travel slide-out -commodebag,out commode tray, 2-way adjustable positioningtray, belts,tray, 2-way 2slide-out- wayadjustable adjustable commode tray,belts, 2- wayslide adjustable-out commode tray, 2-wayheadrest, adjustableheadrest, and andheadrest,upgraded upgraded and For Home AND On-The-Road; headrest, and upgraded ForFor home home AND AND on -the-on-the-road;road; When When ya Gottaya Gotta Go, Go, We We Go GoWith With Ya!” Ya!” headrest,tray, 2-way and adjustable upgraded upgradedcushions! cushions!cushions! cushions! For home AND on-the-road; WhenWhen ya Ya Gotta Gotta Go, Go, We We GoGo With Ya!” Ya!” cushions!headrest, and upgraded For home AND onwww.goesanywhere.com-the-www.goesanywhere.comroad; When ya [email protected] [email protected] Go, We Go With 800- Ya!” 800-359 359-4021-4021 cushions! For homewww.GoesAnywhere.com AND on-the-road; When | [email protected] ya Gotta Go, We Go With Ya!” | 800-359-4021 www.goesanywhere.comwww.goesanywhere.com [email protected] [email protected] 800- 800-359359-4021-4021 www.goesanywhere.com [email protected] 800-359-4021 16 NEW MOBILITY

Custom wheeled travel case “For home AND on-the-road; When ya Gotta Go, It'll Go With Ya!" available. human rights are something that’s really the second floor each day for more than ties and says he sees more groups coming important, but often overlooked,” he says. a year with the help of my father,” says together. “A few years back it was some- Located on the Adriatic Sea, with a Sosa. His complaints and requests for a thing that two or three people did. Now population of about 4.5 million, Croatia new office went unheeded, something he more and more people are sharing their has endured a turbulent 25 years since says happens all too often in Croatia. opinions and speaking up,” he says, not- gaining its independence from Yugosla- “Most people are not malicious,” he ing that the Internet has broadened peo- via in 1991. In 2015, Croatia’s unemploy- explains. But they still see disability as a ple’s horizons and exposed them to other ment rate of 16.5 percent was the third- personal problem, rather than as a social countries’ approaches and connected worst in the European Union. issue. “If you ask politicians for something them with advocates and leaders abroad. Sosa knows his disability only compli- just for your disability, they don’t see it as a Still, change at home comes at a slower cates things. “In general, it is hard to get a great problem, but if you ask for something pace than Sosa would like. He has heard job for everyone, and for people in wheel- because you need it to be ‘normal’ and live multiple politicians promise improve- chairs it is even harder,” he says. “Em- like anyone who doesn’t use a wheelchair, ments in accessibility only to end up fail- ployers are not good with the idea of em- that is where problems start.” ing or apologizing for being unable to ploying people with disabilities as they’re “The question that I personally face deliver. Yet, his own experience shows afraid of getting less efficient work from most often is, ‘How do you think you are change is happening. us. If you look at the structure of Croa- going to make it? People most often think Twelve years after he was turned away, tia’s population, most of the jobs are blue your disability prevents you from being Sosa is finally doing his internship, and collar. So white collar jobs are exclusive able to do some ‘normal’ things.” at the same facility he was unable to at- for the general population and even more Sosa sees social attitudes slowly tend after his injury. The hospital still exclusive for people with disabilities.” changing. “A few years ago it was easier lacks many of the accessible amenities Sosa wanted to continue pursuing for the public to dismiss the opinions of Sosa would like, but a new facilitator who his medical career after finishing rehab, the disabled and do as they liked, think- was willing to work with Sosa’s needs has but like many facilities in Croatia, the ing we will just have to deal with that,” enabled him to take the next step on his hospital lacked an elevator, accessible fa- he says. “That is becoming less and less career path. Once he becomes a board cilities and staff willing to work around possible, because we are organizing our- certified physician, he will be able to ad- his needs. He eventually got a job as a re- selves more and more efficiently.” vocate for change from inside the medi- search fellow at the same facility. His of- Sosa is a member of an active Face- cal profession, and you can bet he won’t fice was up a flight of stairs. “I climbed to book group for Croatians with disabili- be turning away interested candidates.

Ride_New_Mobility_ad2.16.indd 1 APRIL2/16/16 2016 3:18 PM17 STICKER ? NDING DME PRICES STA BY BOB VOGEL SHOCKUNDER

t New Mobility, we get a lot of questions about why disability equipment costs so much. A significant number of readers think that manufacturers are gouging us and that dealers are just out to make a buck. Surely wheelchair costs needn’t look like line items on a new Ford Mustang, right? AWith the current climate of shrinking insurance coverage and narrowing options, we decided to follow the money as far as we could. What we found is that Corpus VS Power “complex rehab technology” is well-named: The complexity of the equipment Elevating Legrest* is matched, if not surpassed, by the complexity of FDA approval, Medicare R: $3,162 M: $2,400 8 reimbursement and qualified customer service in our unique community C: $600 of producers and consumers. We have also come to believe that the great majority of manufacturers and dealers are our allies. They must make a profit to stay afloat, but when you lift the curtain, you often find engineers thrilled to be designing for independence, company advocates toil- ing for better Medicare coverage, and technicians working overtime to uphold our quality of life. Here is a peek behind the scenes at a few of the companies who, yes, make a living, but who also make a difference in our living. * Medicare is inconsistent in its coverage of this component. In some cases, it may be available only if the consumer THIS PAGE: A glance at price tags on a complex rehab power chair. It’s not pays full price. Permobil’s top-of-the-line chair, but it does have state-of-the art components for staying healthy as a quad. There are three figures to be aware of: What the retailer charges if you don’t have insurance, how much Medicare reimburses the retailer (80 percent of the “allowable” covered charge), and what, ultimately, the end user is responsible for paying (20 percent of the “allowable” covered charge). Most private insurance companies base their rates on what Medicare covers. What we can’t see is the dealer’s cost, a price negotiated with the manufacturer based on volume of sales. And, as hard as we tried, exact manufacturer costs are nearly impossible to define (see page 20). PAGE 20: A look at some of the “whys” behind wheelchair component costs, including the convoluted Medicare system. PAGE 23: An in-depth view of how changes to Medicare funding are harming one crucial health product — cushions.

18 NEW MOBILITY RETAIL MEDICARE REIMBURSEMENT $25,315 COST TO CONSUMER RETAIL PRICE

Expandable 7 Controller (for tilt/recline functions) R: $635 5 M: $372 Headrest C: $93 (10” with hardware) Wiring Harness 6 R: $369 for Expandable Controller M: $155 R: $561 C: $39 M: $274 C: $68

Corpus Ergo (or Ride Designs) Back 4 (designed for power recline chairs) R: $993 M: $376 C: $94

Seat (with 50 degrees power tilt and 3 175 degrees power recline to help prevent skin breakdowns) R: $11,355 M: $6,690 C: $1,673

THE BOTTOM LINE Total Cost for Permobil F3 Corpus with Power Recline, Tilt and Elevating Leg Rests RETAIL: $25,315 MEDICARE REIMBURSE- MENT to dealer: $14,894 (80 percent of allowable charge) COST TO CONSUMER: $3,724 (20 percent of allowable charge)

1 2 F3 Corpus Base 2 Batteries (Group 24) R: $7,295 R: $945 NEXT: WHERE DOES M: $4,348 M: $280 C: $1,087 C: $70 THE MONEY GO?

APRIL 2016 19 $ UNDERSTANDING DME PRICES

ccess to complex rehab Research, development and design 2013 GM alone had U.S. vehicle sales technology — medically is the first step in creating equipment of 2,700,000. That same year over that addresses the orthotic support, 18,000,000 bicycles were sold in the U.S. Anecessary, individually proper fit, and skin protection that is Product testing and FDA approval configured wheelchairs, seat- so important to wheelchair users every is another costly and lengthy manufac- ing systems and components day. “Complex rehab products are not turer expense. Wheelchairs must pass commodity items that you pull off a testing by the Rehab Engineering and — continues to be threatened shelf,” says C5-6 quad Josh Anderson, Assistive Technology Society of North by Medicare reimbursement vice president of marketing for America that represents five years of cutbacks. Because private Permobil and former head of product use. John Goetz, government affairs management and marketing for TiLite. manager of Permobil, says RESNA insurance companies tend “Whether it’s a manual chair custom testing includes loading test chairs to to use Medicare policies as made for an individual or a custom-fit maximum weight capacity and rolling guidelines, this affects all power chair where you can dial every- 200,000 cycles on round drums with thing in to an exact fit — like a con- half-inch metal curbing built into them. wheelchair users. Yet there is troller or a headrest that is specific to Also, the chairs are dropped from a a widespread misconception a person’s needs — the design of each height of 6 inches 6,666 times. Power that complex durable medi- part is about maximizing ability. It has chairs must pass additional tests, includ- to fit the person like an orthosis.” ing speed, braking, stability, obstacle- cal equipment is overpriced. Most people with SCI sit in their climbing and numerous electrical People sometimes compare chairs an average of 11 hours per system trials, including battery and the price of high-end power day — ranging from five to 16 hours. controller tests. Test results and design Neither cars nor off-the-shelf bicycles are documentation are then submitted to and manual chairs and com- designed to custom fit and support a per- the FDA for review. A chair can’t be ponents to cars and bicycles. son so intimately and uniquely. Car seats, marketed until it gets FDA approval. Quite simply, these are apples- for example, do not provide the skin Then there are the ongoing costs protection that many wheelchair users of running a business, which include to-oranges comparisons. To need, so we have to sit on our wheelchair — besides the clarify the issue, we looked at cushions while driving to avoid danger- usual daily some of the expenses involved ous pressure sores. As for bikes, the most overhead appropriate comparison to complex costs — paying in bringing complex rehab rehab manual chairs are custom-fit bikes, accountants, attor- DME from original concept to which start at around $3,800. neys, and employees the end user. Economy of scale is another huge like Goetz, who must difference. “Permobil U.S. and TiLite stay abreast produce approximately 20,000 power of all chairs and 20,000 high end manual the chairs respectively per year,” says Anderson. “These quantities are not enough to bring the price down.” For comparison, in

BY BOB VOGEL

20 NEW MOBILITY latest legislation and CMS chart notes — and the therapist (Medicare and Medicaid) for their notes on why they need requirements. the specific equipment. The specialist also requests a prescription WHAT THE DEALER DOES and/or letter of medical neces- TO GET YOUR CHAIR sity explaining in specific detail When a wheelchair product is why they need the equipment, ready to sell, DME dealers that then reviews the documentation, specialize in complex rehab particularly the letter of medical products must provide exten- necessity to make sure the word- sive customer service that goes At the very least, a wheelchair user will work with an assistive ing is exact so insurance doesn’t above and beyond other types of technology professional and PT or OT during assessment. deny the claim. The specialist retail stores. “Per Medicare guidelines, if a may need to request additional An assistive technology professional wheelchair user needs a cushion, back, documentation or a rewrite of the must work with wheelchair customers to ultra-lightweight manual chair or power physician’s letter. At times follow-up make certain they get the most appropri- chair, an ATP must attend an assess- calls and paperwork go back and forth ate custom rehab equipment. RESNA ment with the wheelchair user at a between the doctor three or four times requires a lengthy apprenticeship before seating clinic done by a physical or before it is right. an ATP can qualify to take a four-hour occupational therapist,” says Kruse. The funding coordinator then 200-question test on knowledge of dis- The average seating clinic eval is 1.5 receives the documentation file and re-checks everything and writes up the abilities, complex rehab equipment, hours plus drive time. Following the information. If the client has private diagnosis, and funding. Continuing evaluation, the ATP writes up notes on insurance, documentation is submitted education is also required. “Under the equipment that the therapist has along with a request for pre-authori- Medicare guidelines, basically any piece determined, then gets price quotes from zation — to guarantee payment. If the of complex rehab equipment has to be manufacturers, which all goes in a file. request is denied, the reimbursement delivered by an ATP,” explains Dave “For a manual or power chair we specialist reviews everything and sub- Kruse, an ATP employed by Bellevue are required to do a home assessment mits paperwork to request a hearing to Healthcare in Portland, Oregon, who is which means measuring to make sure th reconsider. “Medicare generally doesn’t in his 40 year supplying complex rehab the chair fits in doorways, etc.,” says do a pre-auth,” says Kruse. “It is the DME to clients. Kruse. “If it is a first-time wheelchair reimbursement specialist’s job to make “It takes a huge amount of time, user or they are getting a different sure all the documents support the cod- driving and paperwork to get a piece of model of chair, I take a demo to the ing requirements, which are kept on file equipment to a client,” says Kruse. “For client’s home for them to try — for any- in case the claim is denied. Medicare each ATP, we employ three full-time where from an hour to a few days — to can deny payment after receiving the office support people.” This includes make sure the chair fits and works in invoice, or years later they can audit a direct support specialist who knows and around the home.” After this, the invoices and if the documentation isn’t insurance coding, how it is handled, ATP’s documentation is turned over to perfect, Medicare can make the dealer what documents are required, and what the direct support specialist. return the payment.” each type of insurance will and won’t The direct support specialist After many hours of work by differ- pay for. Also, a funding coordinator, checks documentation and contacts the ent full time DME specialists, including and a reimbursement specialist. physician — to get the constant reviewing of all information client’s history and and paperwork, the ATP goes over the order with the client, explaining any co-pays or items that aren’t covered. Documents are signed and the order is placed. “With Medicare there is a bond of trust that the client will cover the 20 percent co-pay and a leap of faith that all of the paperwork is perfect and Medicare will pay for it,” says Kruse. A reimbursement “But co-pays can be difficult. If the client specialist must verify that every component doesn’t have the money up front, you is properly coded to can set up a payment plan, but other ensure Medicare times we have done all the legwork and payment. APRIL 2016 21 $ UNDERSTANDING DME PRICES

paperwork to get approval, and then the do on a wheelchair,” says Kruse. “You are cult as funding continues to get cut.” client decides they can’t afford the co-pay.” probably never going to financially recoup When you consider all of the expenses your time, but it makes all the difference involved in getting the correct complex DELIVERING THE GOODS for the client, and that is what this business rehab DME to wheelchair users, prices When the equipment arrives at the DME is all about.” for equipment that is so important to dealer, it is then set up for delivery. Manual After equipment is delivered, cus- us are very reasonable. Continued pres- chairs often require minimal set up, but a tomer service continues in the form sure to reduce reimbursement is a very power chair with a complex seating system of maintenance. “Clients generally real threat to not only gaining access such as power recline and/or tilt-in-space don’t realize how dedicated people in to wheelchairs, but also a threat to our requires time-consuming assembly by a the industry are,” says Kruse. “If I get health and mobility. technician. The final step is delivery of the a phone call from a client who needs wheelchair to the client’s house for final a repair or has a flat tire on a power RESOURCES set up and adjustment by the ATP — and chair, I will go fix it after-hours or on • ATP Eligibility Requirements: www. getting the client’s signature before a bill for a Saturday because I know they won’t resna.org/get-certified/exam-eligibility- payment can be submitted. be moving until I handle it. This usu- requirements After this lengthy, time-consuming ally costs me, not only time away from • Manual Wheelchair Use: Bouts of process of customer service, jump- my family, but also because Medicare Mobility (sitting time per day): www. ing through hoops, and checking and doesn’t reimburse calls to fix a flat tire. hindawi.com/journals/rerp/2012/753165/ re-checking documentation, it is not Other insurance companies require a • National Registry of Rehabilitation uncommon for payment to be denied by preauthorization — how do you get a Technology Suppliers: www.nrrts.org Medicare or private insurance. Of course pre-auth on somebody’s broken down • Characteristics of Power Wheelchair Use this means appeals and more paperwork. chair on a weekend? This is an industry (sitting time per day): www.scireproject. “You can spend just as much time fitting you get into because you care about com/book/export/html/1252 and getting funding for a small piece of helping people. You aren’t going to get • What is Complex Rehab Technology complex rehab DME, say a headrest that rich, but like any job, you have to make (CRT)?: www.nrrts.org/pages/what-is- may cost a few hundred dollars, as you a living, which is becoming more diffi- complex-rehab-technology-crt

22 NEW MOBILITY w

WHEELCHAIR CUSHIONS: HOW A FLAWED SYSTEM AFFECTS COST AND QUALITY BY BOB VOGEL

high quality, properly fitting cushion (the minimum required warranty). “The is arguably the most crucial complex current tests do not measure pressure, Ride Designs rehab DME product for people with meaning you could end up with a cush- spent four A years on R&D SCI — anything less can result in a life- ion that passes the tests, yet puts tremen- for its Java threatening pressure ulcer. Unfortunately, dous pressure on bony areas of the pelvis cushion. Centers for Medicare and Medicaid test- and puts the user at risk of a pressure ing guidelines for cushions are minimal. ulcer,” adds Kara Kopplin, senior direc- Moreover, an outdated CMS coding tor of efficacy and research for ROHO. system lumps a myriad of cushions made In order to make cushions safer for by different manufacturers into the same wheelchair users, ROHO — in conjunc- “skin protection” codes, which gives the tion with Sunrise Medical — invested illusion that all cushions in a particular huge sums of money and years of code provide similar tissue protection. research to develop a better cushion This flawed system encourages “build- testing device, one that measures “You have manufacturers with cush- ing a cushion to meet the code” [skimp- “envelopment” (how well the cushion ions made with cheap combinations of ing on quality development] rather than wraps and supports the pelvis to evenly materials and questionable degrees of sci- investing in research, design and clinical distribute weight and reduce pressure ence and research competing with manu- testing — a practice that advances tech- on bony areas). facturers that have invested a great deal of nology and develops superior cushions. Called the Simulated Envelopment time and money into thoughtful, innova- Not all cushions provide protection Laboratory, the new device is in the shape tive, clinically tested designs,” continues against pressure ulcers even as skin of a pelvis and has 18 pressure sensors Hetzel. “Some consumers and many fund- becomes less tolerant with age or from imbedded at typical pelvic pressure points ing sources believe all products grouped previous breakdown. to show the actual pressure readouts on all in a single code are equal — when nothing “Testing procedures for cushions are 18 points when immersed in the cushion. could be further from the truth.” insufficient in measuring design variability The goal is equal pressure distribution on Research and development is a major for skin protection,” says Tom Hetzel, all areas without any high pressure points. expense for manufacturers focused on CEO, chief science officer, clinical thera- “ROHO uses the new device to test all creating a cushion for tissue protection pist and ATP for Ride Designs/Aspen models of our cushions,” says Kopplin. versus “meeting the code.” Ride Designs’ Seating. “The tests can be completed by an “As of 2015 the International Standards most recent cushion, the Java, took four independent lab in a couple of days at the Organization has published the new device years of research and development and cost of just a few hundred dollars.” as an international test specification, and employed three full-time engineers to get Cushion tests to qualify for Medicare in the U.S., RESNA is close to finalizing a ready for another two years of university funding include a Cal-117 fire safety test published version as well.” studies and research papers. It took two and a simulated immersion laboratory studies of 10 subjects averaging 18 years test, where two cylindrical devices, meant OUTDATED CODING post-SCI to clinically prove the efficacy to simulate a human pelvis, must sink VS. RESEARCH AND of the cushion before they were ready to 40mm with a 31-pound load without DEVELOPMENT bring the Java to market. bottoming out after simulated aging of 18 Outdated coding encourages poor-quality ROHO has a similar approach. “We months cushions. There are at least 100 cushion spend a tremendous amount on evidence- models made by approximately based research, while other companies 20 or more manufacturers in that make similar-looking products spend Medicare codes E2622 and little in this area,” says Dave McCausland, E2624 for the type of high-end vice president of government affairs, cushions used by a majority ROHO. “Research costs include manu- of wheelers with SCI. In 2015, facturing a prototype mold for every they had a Medicare reimburse- research cushion — something that is very ment rate of 80 percent of $368 expensive with no guarantee that it will and 80 percent of $371, respectively, ever reach the consumer. Additional costs and that rate is trending down, not up. include laboratory studies, clinical studies “The current coding system is very dan- and support papers for the research.” ROHO spends “a gerous because it does not differentiate Quality control and customer ser- tremendous amount” on evidence- based research to learn what works for between technologies,” says Hetzel. vice are other fluctuating variables. “We real wheelers. APRIL 2016 23 have three levels of inspection before answer? Insufficient reimbursement a product goes out to the dealer and funding to cover the service.” GET INVOLVED our warranty is at least 24 months and • Write down your DME reimbursement usually three years, when the required ONGOING EFFECTS OF story. Share it with your families, friends, minimum is only 18 months,” says REIMBURSEMENT CUTS social media networks, health care McCausland. “If you have a problem Reimbursement cuts not only jeopar- professionals and most importantly, your with a ROHO during the warranty dize manufacturers’ ability to provide congressional representatives. Find contact period, we will ship a replacement right cushions with quality skin protec- info for your elected official here: www. away. We could make a lot cheaper tion, it puts the financial brakes on unitedspinal.org/action-center/. product, have it made in another coun- advances in research that lead toward • Get to know your senators and try, have shorter warranties, and not do greater independence and mitigation representatives. The most effective strategy immediate warranty replacement, but is of risk. “When I have a brilliant idea to make an impact on any elected official that what the wheelchair user wants?” for seating, I have to consider minimal is to build a relationship with that person. Write to them, call their office, schedule The goal for elite cushion manufac- reimbursement versus development appointments to talk with them about this turers is to have CMS award a separate and research costs — without any con- issue and show up at community events benefit category for complex rehab fidence of a path towards reimburse- they’re speaking at, such as town halls. By DME like the prosthetic industry has ment,” says Hetzel. spending time getting to know them, you had for decades. Innovations in the “It is important for wheelchair users may get their vote in support of your issue prosthetic industry are funded favor- to advocate for funding while they still today or in the future. ably, and payment is authorized for the have a chance,” says Hetzel. “Downward • Join the Advocacy Alliance (www.united service component. “We don’t have pressure on reimbursement is not only spinal.org/advocacy-alliance/). To learn that advantage," says Hetzel. “When causing access issues to correct technol- more, contact Jenn Wolff, United Spinal’s I present our seating concept to a ogies, it is actually putting roadblocks up Advocacy Alliance Manager, at jwolff@ room of prosthetists or orthotists, they to further innovation. Access to quality unitedspinal.org. Look for Wolff at the Advocacy Alliance’s “Sound Off — Selfies all get it. They have been doing this seating is very tenuous right now. It may and Stories” booth at Abilities Expos and concept of support to control posture take the loss of this access for consumers consider sharing your story on video. and alignment for eons. So I ask them, to say, gosh, I should have advocated a — Jenn Wolff ‘why aren’t you doing seating?’ Their few years ago.”

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24 NEW MOBILITY WHILL Artwrok April Outlined.pdf 1 3/9/16 2:04 PM

CMY

K IS AD LAND REALLY CHANGING?

BY ALLEN RUCKER

It’s a national pastime to hate commercials. Only during the Super Bowl are commercials given any respect. That’s when the best of the best show up, or so they say. This year, the best of the best was a troupe of wiener dogs dressed in hot dog buns.

K, every year can’t be great. But cious young woman trying to sell you a the word “LOVE.” When the response big-time commercials can also phone plan.” And what is more vanilla came out, it was reportedly the most be seen as cultural road signs than Honey Maid Graham Crackers? shared online message on the face of Othat often precede other media in spot- That’s about as close to “Leave It To Bea- the earth. According to Honey Maid, ting and exploiting social trends. For ver” ’50s blandness as you can get. “In one month, Honey Maid went from example, recently both television and The Honey Maid people, knowing a graham cracker that people loved to a print advertising featuring people with that no one will notice an all-vanilla brand that people loved.” This appears disabilities is on the rise and decidedly cracker ad, decided to take a chance to be the near future of product adver- more prevalent than the inclusion of and appeal to real American families. tising in America, or a big part of it — people with disabilities in television They launched a campaign called “This a turn toward reality. And it’s a trend programming itself. Every expert I is Wholesome,” featuring same-sex where people with disabilities can be a talked to, from advertising journalists couples, single dads with tattoos, and potent part of the mix. to Hollywood talent agents, agreed. It’s a mixed-race military family, all eat- The ad agency reached out to disabil- somewhere between more than occa- ing delicious graham crackers. The re- ity media expert, Tari Hartman-Squire, sional to a trend. sult? Hate mail galore from those who to assist with authenticity and outreach. Advertising has to break through thought same-sex couples were shame- The very next “wholesome family” ad the clutter and get your attention. These ful, with comments like “this is an at- that Honey Maid released was called days it is being done with what Holly- tempt to normalize sin.” “Apple & Cheese Melts,” featuring a wood talent agent Gail Williamson calls The company’s response was to take woman who uses a wheelchair helping “vanilla — the friendly black doctor, the all of those nasty letters and mesh them her niece make graham cracker melts. overwhelmed soccer mom, that viva- into a huge sculpture in the shape of You don’t notice the wheelchair until

Honey Maid’s “Apple & Cheese Melts” ad is particularly groundbreaking because it features a woman who is a real power chair user. 26 NEW MOBILITY Clockwise from top left: Kroger grocery stores, Toni&Guy hair salons, Kleenex tissues, Honey Maid graham crackers, “COOL PEOPLE IN Target stores, Axe men’s products. WHEELCHAIRS ARE DECIDEDLY NEW CONTENT, RIGHT ALONG WITH HEAV- ILY TATTOOED DADS AND MIXED RACE COUPLES.”

APRIL 2016 27 the very end of the ad — the reveal that The Axe commercial makes the whole ad register. Honey Maid features several guys was inclined to search for a real family making a perceived member with a disability based in part disadvantage look cool. on the National Council of Disability’s parenting report, “Rocking the Cradle.” In this case, everything was indeed real — the woman in the chair is Stepha- nie Woodward, a disability rights attorney in Rochester, New York, the little girl is her actual niece, Charlee, and the spot was shot in Woodward’s own kitchen.

WHAT HAS CHANGED? So, why are things in Ad Land so differ- So, great, the airwaves, both analog and their depiction of people with dis- ent from 10-15 years ago? Josh Loebner, and digital, are now crawling with disabilities. In the past, commercials would director of strategy at ad agency Design- ability-centric ads? Not exactly. normally paint someone in a chair as one sensory in Knoxville, Tennessee, writes Perhaps the country’s leading authori- of those two hoary clichés — superhu- a popular blog about advertising and ty on this matter, at least in terms of quan- man or needy. Now, more often, they are disability, www.advertisinganddisabil- titative analysis, is Olan Farnall, Ph.D., a presented like Stephanie Woodward in ity.com. He has a clear-eyed view of both communication and media scholar at the Honey Maid ad — just normal people subjects. “Advertisers,” explains Loebner, Texas Tech University. In 2012, Farnall going about their daily lives [see sidebar]. “can no longer advertise a product’s fea- conducted an exhaustive survey of what Barbara Lippert, a prominent adver- tures and benefits. Everyone knows what he called “ability-integrated” TV advertising journalist who wrote the award- a Coke is. To make an impact, they have tising (AIA) and compared it to a similar winning “Critique” column for AD- to make social and emotional connec- study done in 2001. In a sampling of over WEEK for years and now has her own tions with potential buyers. Honey Maid 1,600 commercials, Farnall found that 29 blog, MediaPost.com, says that she is isn’t selling crackers. They’re selling a so- made the grade. Doesn’t sound like much, “encouraged by the difference now in cial trend that real buyers can relate to.” does it? In 2001, the number was 15, i.e., the level of awareness and sensitivity ad “Nowadays,” he says, “ad makers don’t half as many. Extrapolated from his sam- makers have for people with disabilities. want just financial currency. They also pling, there are far more ads out there It gives the ads both texture and reality.” want social currency. The latter brings than 1,600 and far more AIA ads than 29. Lippert points to a recent ad as an more visibility and more engagement Today is a huge ad universe. Counting in example — Swiffer, maker of nifty new and can last a lot longer than just one multiple repeats, there may be as many as mops and the like. The ad, called “The -Ru impulsive purchase.” And in Loebner’s 1,500 30-second spots airing a day! kavina Family,” features a single-armed view, “Social media now means every- Farnall estimates that the frequency Caucasian amputee who boasts about his one is an advertiser.” Buick ads or Dollar of ability-integrated ads is about 1.7 per- ability to “out clean” his African-Amer- Shave Club ads — same potential expo- cent. By comparison, in the last study ican wife as their mixed-race kid cheers sure. It’s a level playing field where the published, the frequency of actors with them on. This is the advertising version most remarkable material, from Funny disabilities in speaking parts in a given of a hat trick: a white-guy amp in a mixed or Die to the women-centric blog, Jezebel, television programming season was .5 marriage proudly doing housework. He rises above the endless mind-numbing percent. Get out your calculator — that’s could have been in a wheelchair and still GIFs. This limitless platform is as new to more than three times greater. got across the same message. advertisers as it is to the rest of us, and It has been four years since Farnall when something like the Honey Maid canvassed the TV commercial landscape, campaign attracts millions of eyeballs, so the uptick from then to now is largely WHEELCHAIRS IN YOUR virtually for free, the whole industry anecdotal. Farnall himself sees two on- LIVING ROOM starts buzzing. going trends. First, the increasing pres- There are dozens of other examples of this ence of AIA ads on cable television as rise in the portrayal of people with dis- opposed to traditional broadcast outlets. abilities, specifically in wheelchairs, enter- Cable shows, at least the good ones, try ing your living room. The first such com- to break every barrier known to man, so mercial of 2016 is for the youth-market seeing an AIA ad during Breaking Bad or deodorant for men, Axe. In a campaign Transparent doesn’t seem risky at all. To called “Find Your Magic,” we hear the an- the demographic watching such cable of- nouncer say, “You don’t need heels when ferings, these ads fit right in. you ride those wheels” — and we see a Online videos can be longer than TV ad spots The second trend Farnell notes is a cool guy in a chair whirling his date on the and often tell stories with high “social currency.” marked spike in the quality of such ads dance floor at the high school prom.

28 NEW MOBILITY t’s the holiday season and the doorbell rings. Nick Magistrale, 35, T7-8 para, goes to the door in his manual wheelchair, opens Iit and an animated woman, mid-30s, instantly hugs him with a big “Hi!” Nick responds, “It’s wonderful to see you.” A man, Asian- American perhaps, follows closely on her heels, and Nick greets him warmly. It’s a party, a gathering, and one by one the guests connect, exchanging pleasantries, mostly about how “wonderful” everything is — the prime rib, a gift someone received, a sliced ham. And then comes the dinner toast. Sitting at the head of the table, Nick raises his wine glass with the others. “And to all of you,” he proclaims, “and the most wonderful time of the year. Cheers.” The room is filled with the clinking of wine glasses and voices raised in unison. “Cheers!” What a spontaneous feel-good moment! — and it’s all carefully scripted, cast, rehearsed, and filmed for airing around the nation by Kroger, one of the world’s largest grocery retailers, with 2,600 stores in 34 states and annual sales of $108 billion. The call for a 30-ish man who uses a wheelchair went out last September. Magistrale’s mother saw the newspaper ad in the Port- land, Oregon, area. She called her son in Tucson and bugged him until he finally made arrangements to fly to Portland to audition. Nick was hesitant at first, never having acted before. But he was perfect for the role, just the type of warm, diverse Millennial that Susan Ramsay, director of creative services for Kroger, and Julie Patterson Holland, head of production, wanted for Kroger’s Nick Magistrale had the authenticity Kroger in-house-produced TV commercial. “Our goal was threefold,” was looking for in a says Ramsay. “We wanted authenticity, connection and emotion, holiday host. and we wanted to use actors and people who come across as real people gathering for a holiday dinner.” She wanted the cast to represent the kinds of people who might live in a city but be apart from family. The message would be warm, uplifting and real, without overselling. Thirty-plus cast members showed up in Portland for the all- day shoot, meeting and greeting. “Nicholas emerged right away as someone who could act as a congenial host and leader,” says Holland. “He had a way of putting everyone at ease.” When you think about it, he had just the right background cleared my lungs of fluid, put me into a drug-induced coma and and experience. “It goes back to my injury,” says Magistrale. “I on a respirator. But I had tons of community support, that was always tried to make others comfortable around me. That feels the key,” he says, still grateful. Not only was he fortunate to live, good. That’s rewarding,” he says. It is not an uncommon experi- he still received that full-ride scholarship — even though he ence for those of us who must adapt to such a sudden and unre- would never play football again. lenting change in our lives — instant disability, wheelchair awk- So now what? Will he try to capitalize on his 30 seconds of wardness, unspoken assumptions of others. Gradually we learn fame and go into acting? “I just need to look into it. I’m fresh to put people at ease. “I was fortunate to work with such a great meat. No idea what I’m doing. But it’s been a lot of fun,” he says. group,” says Magistrale. “It was a lot of fun. At first I was nervous, “In hindsight I’m so glad I did it.” but I did a little research on how to keep calm. Basically the best Perhaps the best part happened during the holiday season advice was to just be myself. Don’t act.” when the commercial was airing all over the nation. “I was in an Magistrale was a 17-year-old senior at Lake Oswego High just airport, and you know how it takes longer for wheelchair users to south of Portland — a star football player bound for the Univer- go through security. One of the TSA attendants comes up to me, sity of Arizona on a full athletic scholarship — at the time of his a mature lady, sweet and friendly. I was tired from traveling, had 1997 accident. Besides his SCI, he sustained broken ribs, a punc- my head down. ‘I know who you are,’ she says. Everyone nearby tured lung, pulmonary edema and was life-flighted to Oregon kind of looks at me. I’m thinking, whaaaaat? ‘You’re the guy from Health Sciences University. “It was a nasty accident. I had to be the commercial. Mr. Wonderful.’” resuscitated, was pretty much dead. They brought me back, “Yeah. That’s me,” he says. — Tim Gilmer

APRIL 2016 29 These are real people, in their real home, Toby Forrest is just another pet wearing their real clothes, with real sen- owner in this timents. As the man’s wife says about the PetCo ad. para-dog, “It’s so nice when you come home, he’s running at you at the door, going so fast, his butt slides into the wall ... it makes you appreciate life.” If you’ve ever been around dogs using a wagon for legs, you know what she’s talking about. They couldn’t care less that they are impaired. Chasing a bone is chasing a bone. Maybe there is good inspiration porn and bad inspiration porn. Put this one in the good column. Williamson, who just happens to be the leading agent for actors with disabil- AD MAKERS CAN’T AFFORD TO BE EXCLUSIONARY ities in Hollywood, has a unique vantage IN A WILDLY HETEROGENEOUS CULTURE LIKE point on this phenomenon. Dealing only with performers, she, too, has seen a lot CONTEMPORARY AMERICA. more business in the last three years. Be- fore, she says, “the requests from the ad If you watched Super Bowl 50, only one in a wheelchair with a service dog. Tar- world were for a generic ‘disabled person.’ ad featured a wheelchair — for SunTrust get now runs both print and TV back-to- Now the breakdowns (i.e., casting sheets Bank — and “featured” here means the school ads with kids in wheelchairs and for actors) are getting both more specific man in a chair showed up for a second on crutches playing around in bright col- and more real, to the point of wanting ac- or two, but a second or two in front of ored clothes like all their classmates. tual family members.” 167,000,000 viewers. A pre-game Toyota And there are more: Nordstrom has ads “The difference between commercials “Fathers and Sons” ad featured a football and catalog photos featuring a series of peo- and TV shows,” she adds, “is that com- star talking about his double-amputee dad, ple with disabilities, including quad beauty mercials don’t require a lot of acting. Ads and last year, Toyota and Microsoft ran and Push Girl, Angela Rockwood. J.C. Pen- are about image, not acting.” The image powerful ads featuring double amputees ney has a guy in a chair getting married. A has to be unquestionably believable. To- using state of the art prosthetics. Double longer version of the Toyota “Fathers and day’s commercial makers don’t want a amps, I guess, make for arresting images. Sons” spot features an off-camera inter- nondisabled person, no matter how fa- Here are a few other current, wheel- viewer asking a child in a wheelchair what mous, playing a disabled person. That chair-referenced spots to check out: a Pet- he likes most about his dad. His answer: would ruin the message. co ad opens with quad actor Toby Forrest “He takes me everywhere!” whizzing down the block being pulled by When these ads are masterful, they stay NEW MONEY ON THE BLOCK his frisky dog. Lego is about to launch a in your brain forever. Remember the Guin- campaign that features a Lego-made kid ness Beer “Wheelchair Basketball” ad of a Even if they are only image-enhancers, couple of years back, where only one guy performers with disabilities were non- in the game is an actual wheelchair user? existent for most of TV advertising’s his- Of course you do. It’s an instant classic. tory. Hartman-Squire, one of the princi- Now some might see that spot, and pals behind the “Lights! Camera! Access! many others, as “inspiration porn,” with 2.0” think tank, traces the emergence of the elbow-throwing guy in the chair be- ads featuring people with disabilities to ing the inspiration. Adman Loebner the 1984 Olympics in Los Angeles. Levi’s points to another spot that might draw ran a bold spot featuring a youthful couple on a walk when the camera pulls the same reaction. Made for Kimberly- back to show the guy doing a wheelie. The Clark, aka, Kleenex, it is called “Unlikely same year a Paralympic wheelchair user, Best Friends” and features a paralyzed George Murray, was the face on a box of dog and a paralyzed man and their man- Wheaties. “For decades,” says Hartman- dog camaraderie. “Chance,” the dog, hit Squire, “a spot with a family with a mem- by a car and close to euthanasia, is an ev- ber with a disability was a rarity. But the er-present reminder that, back legs or no zeitgeist changed.” back legs, life is good. Kleenex is never Beyond the changing style of adver- mentioned until the final graphic. tising, two other factors add to the cur- “Ah,” you’re saying, “isn’t that an rent, and hopefully ongoing, growth in overly sentimental scene?” Not really. disability-related ads: Millennials and 30 NEW MOBILITY MAYBE THERE IS GOOD INSPIRATION PORN AND BAD INSPIRATION PORN. PUT THIS ONE IN THE GOOD COLUMN.

Kleenex navigated a fine line with its TV-magazine-style story about an active wheelchair user who adopts a paralyzed dog. It does tug at the heart (keep the Kleenex handy) yet it feels digni- fied and true to life. money. Millennials, according to Forbes, will make up half of the workforce by 2020 and are now the target audience for thousands of marketers like Axe or Dollar Shave Club — they have disposable cash ad makers can’t afford to be exclusionary and are not yet brand-loyal. To get to these in a wildly heterogeneous culture like youngsters, you have to go where they are contemporary America. Demographics watching, and that ain’t the CBS Evening don’t lie. They need every Muslim, Mil- News. It’s cable and social media, and the lennial, same-sex-married wheelchair ads better have new style and new content. user they can find. Like that big Honey Cool people in wheelchairs are decid- Maid sculpture constructed from hate edly new content, right along with heav- mail, they preach love and acceptance of ily tattooed dads and mixed race couples. all people, an almost dissident message in Seeing a wheelchair user dancing is such a fragmented, hate-filled society. something Millennials have seen over Well, that’s my pitch — did you buy Muniba Mazari is proof that the trend and over again at Coachella or Bonnaroo. it? The truth is, we shouldn’t get carried to include wheelchair users in ads is go- In their minds, ads like this are simply away here. The potential is great, but the ing global. She appears in a campaign catching up with their everyday reality. number of ads showing people with dis- for Toni&Guy, a London-based interna- But the Honey Maid or Kleenex people abilities is still infinitesimally small. As tional chain of upscale hair salons. weren’t targeting just Millennials. They Loebner points out, “Ads featuring peo- In addition to being known for were going after you and me. You may ple with disabilities are still a novelty — modeling, Mazari, 29, who lives and have heard these mind-boggling statistics that’s why good ones get talked about on works in Pakistan, is an anchor for before, but the disability demographic in morning TV shows and in Time maga- National Television of Pakistan and America, all 50-plus millions of us, has zine. The day they become widespread, was named one of BBC’s 100 most about $200 billion in yearly purchasing they’ll lose their gee-whiz quality, which inspirational women of 2015. She is power. That seems like a lot, but there is might be a good thing.” also a singer, motivational speaker more. What is often overlooked is that an In the meanwhile, we should all sup- and education advocate. ad featuring a disabled person is also try- port the sponsors who support us by post- Fittingly, Mazari, who was injured ing to hook in all those close to that person ing and sharing these spots on line, the in a car accident at 21, wasn’t just with a disability, and when you add up all fastest rumor mill known to man. Also, showcasing her beauty and style in those uncles, aunts, and close friends, you make the ad men happy and buy the stuff. I the Toni&Guy campaign, which was are now looking at purchasing power of an have never bought a graham cracker in my titled “Women of Substance.” Recog- awesome $3 trillion. That’s a lot of Toyotas life, but if I ever get the hankering, Honey nized for her intelligence and resil- and Lego bricks. It’s an ever-widening cir- Maid is the ticket. I’ll get to the grocery ience, she was featured alongside a cle. One expert summed it up nicely. “It’s store to buy it driving my new Toyota and nondisabled architect, professor and not a niche — it’s a blockbuster.” stopping at Petco, Target, Nordstrom and school director, among others. Learn Lippert points out that unlike cer- J.C. Penney along the way. more at www.munibamazari.com. tain politicians running for president, I’m a sucker for a good ad.

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APRIL 2016 33 Chapter Check-In

Oregon Spinal Cord Injury Connection Gains Steam

Livaudais returned to Portland immediately. nal Association, a big step in furthering the Complications followed and he developed a reach of the organization beyond Portland dangerous infection and abscess, which ulti- and throughout the entire state, according mately pinched his spinal cord, paralyzing to Livaudais. him at the C7 level. He plans to launch an SCI peer mentor- Livaudais says the idea for Wheel Con- ing program, which would train experi- nect came to him on a whim while having enced people with SCI to help individuals a drink after therapy with a friend who was with new injuries. “I imagine developing a also used a wheelchair. “I thought, why can’t community health outreach program that we make this a group thing?” he says. “We would improve the health outcomes and started to invite a few more people, and the social and emotional adjustment of those re- whole idea kind of blossomed from there.” cently discharged with SCI. Veteran wheel- Wheel Connect was the first step, and from ers with SCI are qualified to be community that Livaudais created the Oregon Spinal Cord health coordinators because they have Injury Connection to help those with spinal knowledge of the difficult adjustment to this West Livaudais created Oregon Spinal Cord In- cord injuries throughout the state of Oregon. jury Connection to fill a need in Oregon. new life,” he says. “As community health “Oregon SCI Connection is a group for all coordinators, they would collaborate with those affected by spinal cord injury, new and local SCI rehab programs and home health izzas are sizzling in the oven, special- veterans alike,” Livaudais explains. to outreach to newly-discharged people with ty beers are flowing from the tap, and In addition to Wheel Connect, The SCIs and their families.” Plively tunes are blasting throughout Oregon SCI connection has also created Although his path may have suddenly the bar. It’s just a typical, crowded last Mon- a forum to open dialogue between people changed, Livaudais says he is still fulfilling day at The Lucky Lab Brew Pub in Port- with spinal cord injury and health care his desire to help people, but just in a differ- land, Oregon. And although the atmosphere professionals to help transition to life after ent way. is already rocking, when West Livaudais rehab. The forum covers a variety of issues, “It was through my work with Mayan and his crew arrive around 6:30 p.m., the including emotional, physical and psycho- mothers in rural, indigenous communities place really gets rolling. Livaudais is the logical obstacles that the SCI community in Guatemala that I learned how to utilize founder of The Oregon Spinal Cord Injury faces. The meetings typically take place at the dynamics of community engagement to Connection and the monthly Wheel Con- the Rehabilitation Institute of Oregon in leverage a community’s strengths to pro- nect gathering, which brings the local SCI Portland. Recent workshops and discussions mote health,” he says. “Ultimately, I want community together for a social evening to have included dating and relationships after to strengthen and engage others to promote gather support and share experiences. SCI, regaining independence through trans- their own health and well-being. Now, find- “When we started a little over a year portation, and a discussion among women ing myself in the SCI community, I want to ago, we only had five people show up. Now with SCI, just to name a few. use my experience and training to build this the group has grown to 35, with family and The Oregon SCI Connection recently community to promote its own strength. friends sometimes making it 50,” Livau- became an affiliated chapter of United Spi- We’ll learn as we go.” dais says. “We have Wheel Connect meets on the become close and have last Monday of the month from developed a camarade- 6:30 p.m. to close at the Lucky rie and strength together Lab Brew Pub, 1495 NW Quimby through our relatable Street, in Portland. For more in- stories.” formation on The Oregon Spinal For Livaudais, that Cord Injury Connection, visit story began back in www.oregonsci.org. 2013. Having always — Maureen Gazda possessed a deep desire to help people, Livaudais was living in Guatemala working for Medical Teams International as the maternal and child health program coordinator when he was hit by a truck and sustained a severe hip injury.

34 NEW MOBILITY MOBILITY News

Jane Wierbicky, Nurse Information David Heard, Membership Coordinator Specialist Superhero he resembles: Deadpool Superhero she resembles: Jean Grey Without Heard, inquiries might fall through As the only team member with a back- the cracks or end up on the wrong person’s ground in nursing, Wierbicky is the desk. He doesn’t let that happen. “He keeps go-to team member for tough medical things going behind the scenes,” says Fertig. cases, but she brings much more. “She “Living with SCI himself, he recognizes the has a great background and experience in needs people have, even in a routine email.” different SCI experiences,” says Fertig. Elliott calls her the “heart and soul” of the team: “She always finds that personal human connection.”

Daniela Castagnino, Information Getting to Know the United Specialist Spinal Resource Center Team Superhero she resembles: Beast Castagnino is “the brains” according to Bill Fertig doesn’t shine a wheelchair- her teammates. “She’s great at finding the shaped distress symbol into the night sky right resources,” says Wierbicky. “She every time a call comes in to the United loves to dig deep and find things that can Spinal Resource Center, but for callers in help people.” That passion makes her need, the team of experts he assembles may perfectly suited to the Herculean task Front row: Nick LiBassi, director, chapter rela- be the closest thing to SCI/D superheroes tions; Bill Fertig, director, resource center; Dan- of updating United Spinal’s voluminous out there. Every month, they use their iela Castagnino, information specialist; Back row: resource guides. And she’s got a wicked unique skills and expertise to resolve hun- Jane Wierbicky, nurse information specialist; sense of humor. dreds of inquiries about spinal cord injuries Abby Fitzsimmons, COO; Lindsey Elliott, director, member initiatives. and disorders. Here’s a quick look at the (super)heroes who make up the team.

Bill Fertig, Director Power-assisted arm support GoWing GoWing provides a stable support for precise Superhero he resembles: Captain activities. GoWing supports the execution America of numerous daily activities. Every team of superheroes needs a leader with vision who devises brilliant plans. Assistive robotic arm JACO That’s Fertig. “One of the greatest things JACO was created to be user friendly and intuitive, Bill brings is an ability to see everything allowing performance of daily tasks, objects and connect the dots,” says Jane Wier- manipulation and interaction with environment. bicky, the Resource Center’s nurse information specialist. “He’s super compassion- SEE US AT THE ate and tireless, and he’s great at bringing people together.” CHICAGO NY METRO AOTA ABILITIES Lindsey Elliott, Director of Member A 7 - 10 A 29 - M 1 Initiatives Superhero she resembles: Wonder Woman With laser-like focus and a big heart, Elliott is a problem solver who strives to improve and help everything she touches. Her background as a social worker gives her unique insight and makes her well suited to lead programs like United Spinal’s Peer Mentor Training. “She has built her programs to be much larger and deeper than when she took over,” says Fertig. “She brings drive, energy and enthusiasm to 314-324-2470 everything she does.” kinovarobotics.com

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It’s no surprise that a spinal cord injury Same Friends, Different Reality can change friendships — in some cases Almost inevitably, there are social fears after the trauma of a spinal cord injury. making them stronger, and in other cases, Megan, injured at age 18 in 1995, says that beyond the physi- causing them to end abruptly. Sometimes cal changes she faced after her T5-L1 injury, she felt certain she was going to lose all her friends — and that was terrifying. “My that’s for the best, since fair weather friends greatest fear was that all of my friends would abandon me and that I would never have a family or a husband or children or may not be friends at all. But here are some anything like that,” she says. “That I would have to give up any tips from Facingdisability.com vloggers for thought of ever having a normal life.” Luckily, none of that came to pass. “I had enormous sup- how to navigate those other times, when port from friends, a very close circle of friends, that were always friendships can be saved, nurtured there and said, ‘no matter what, we’ll be there for you,’ which was very helpful because I went back to school three months and even blossom into more. after my accident.”

APRIL 2016 37 to be able to go to the bathroom at this less they’re told — as uncomfortable as Megan place?’ and they suddenly gasp, ‘Oh! I for- telling them might be. Chase has lived got! We’ll have to reconsider.’ It happens.” with T11-12 paraplegia since age 17, and After Vicki’s diving accident, the says that although it took a while for then-22-year-old quickly realized that his friends to become comfortable with in addition to handling all the physical him again after his 2007 injury, they got changes of her injury, she also had to take the lead on helping her friends deal with her injury. This is a strategy she employs “Sometimes I’ll have a change in today as well. “When I meet someone new, it is my my health status, like a bout with job to make them feel comfortable with autonomic dysreflexia. When I can my wheelchair,” Vicki says. “It’s still true nearly 30 years later. I meet people who see the worry on my friends’ faces Today when Megan addresses her are uncomfortable with my injury and — that’s when I know I have to friends on the subject of her life with a the way my body looks, and I have to help disability, she always tells them, “It’s not them understand that I’m OK.” get back to reassuring them it’s all easy to live with any kind of disability, it’s This is especially important during part of living with paralysis.” a hard life, but at the same time you can those times when she’s really not all that – Vicki be happy and fulfilled.” OK. “Sometimes I’ll have a change in For Vicki, a C5-6 quad, today the my health status. Things like a bout with biggest problem with her friendships is autonomic dysreflexia or a broken bone reminding them of the more concrete from a fall,” she says. “When I can see the through it. “I’m closer with my friends realities of using a wheelchair. “With my worry on my friends’ faces — that’s when now, definitely very close with all my friends, it’s really funny, because they I know I have to get back to reassuring friends. I’d say I’m with them probably forget I use a wheelchair,” she says. “They them it’s all part of living with paralysis.” every day,” he says. His secret? Being make plans to go somewhere, and I say, After all, nondisabled friends have no open and honest about all that his injury ‘what’s the parking like?’ Or, ‘am I going idea what it’s like to live with an SCI un- entails, and showing he’s OK with it. “I

38 NEW MOBILITY came out and just said, you know, ‘Hey change because the person in the wheel- And she is supportive to them in turn. guys, I wear diapers sometimes, I pee my chair is going to get better at some things. “You know how there’s that one friend pants sometimes, and I’m going to need And the person in the wheelchair is prob- in every bunch who everybody needs to help doing this — help doing that,’ and ably not going to need some of the things get advice from? Well, that’s me! So now they just kind of accepted it. And, it’s that they used to need [right after their everybody’s always at my house — ‘Oh normal now.” injury], they’re going to end up needing Michelle, I need to talk,’” she says. “So new things. Everything is going to evolve The key is to remember things are dif- they’re great, I love them! And if I ever and change — but for the better.” ferent for everyone post-injury, including need a ride, I always have one.” It may sound hard to believe that life our friends, says Tony, a C5-7 quad in- can get better after a spinal cord injury, jured 25 years ago when he was 27 — but but Michelle, a C6-7 quad injured at the that most situations improve with time. age of 21 in 2002, says it’s true for her as The Pain of Friendship Lost Giving yourself some time to adjust, and “Just understand that this is a learning ex- well. “I am very happy,” she says. “I al- your friends’ as well, is often all that’s perience,” he says. “Everything is going to ways say it’s kind of strange, it took this needed for most relationships to get back tragedy to happen to me to put my life in on track and feel comfortable again. But Tony perspective. Like, before I was injured, I didn’t go to concerts, I didn’t go to plays, for some friends, nothing seems to work. I really didn’t go out of my comfort At age 62, in 2008, Nova had a fall zone, but now it’s like I push myself to that resulted in T6 paraplegia. She says do things like that.” her greatest fear was losing her deeply Perhaps having wonderful, support- loved, longtime friends. Not only did ive friends has helped her recovery? “My that partially come true, but she was friends have been great,” she says. They shocked by how easy it was for some of were very supportive while she was in them to detach. rehab and that continued when she was “I have written emails to people who released. “Before we got the lift in the didn’t know what happened to me, or house, if I needed someone to help me heard back from people who did know with stairs, they would.” what happened to me, and tried to touch

APRIL 2016 39 bases, and no response,” Nova recalls. my life. I’m not embarrassed to answer “And I remember writing to this one anything, feel free to ask.’” The Psychology of Friendship woman whom I’ve known for 25 years, The friend who wrote she felt like an “In my mind there are two types of people saying: ‘I don’t want to pressure you, and awful person is much younger than Nova who leave a friendship, and they are very I don’t want to impose upon you, but I’m and they had become friends while work- distinct,” says Dr. Lester Butt, rehabilitation hurt, and we have such history with each ing together on setting up commercials psychologist at Craig Hospital, in Denver, other. I love you, what’s wrong?’ One and personal appearances for profes- Colorado. “It’s important for people with a spi- friend didn’t reply at all. Another wrote sional athletes. Nova was an important nal cord injury to appreciate the difference.” back: ‘I feel like an awful person, I just mentor and as the friendship grew, Nova “The first set of people who leave are don’t know how to handle it.’ And I re- recalls, “She even began to call me her those with whom your relationship was sponded, ‘I’m totally willing to help you mother. Her own mother had been dead predicated upon fragile kinds of param- handle it because I don’t want you out of for a long while.” eters, things like, ‘all we did is party,’ ‘all we did was go out and hunt.’ These are activity- based relationships,” he explains, and “if the person with a disability can no longer engage in those activities, the friendship Do you Believe in Magic? might not have as much power for the nondisabled person, and they can leave.” The second subgroup of friends who Bowel & Bladder Basics are our Business! can detach, withdraw or potentially leave is very different from the first network. “These Urological Supplements Suppositories are people who care so deeply, care so much, or feel that they have such little skills Cran Magic + ™ The Magic Bullet™ in terms of understanding that they pull bladder, kidney & urinary health. safe & sure! Faster acting, away,” he says. “The person with the injury water soluble suppositories. has to appreciate or discriminate between those two, to be able to reach out to the Mannose Magic™ latter group. It is vital not to leave friends maintain a healthy urinary tract- flush Bowel Supplements behind who are really caring.” away E.coli. Magic Cleanse™ Johnathan, who became paraplegic at promotes fuller movements age 19, tells how he was able to preserve with greater ease friendships that fell in the second sub- (and less time). group. In the beginning, his friends came to the hospital every day. “But once I was Enzyme Magic™ home, my friends would visit and say, ‘We’re better digestion= better elimi- just stopping by, and we’re going to get nation. something to eat.’ And I would think after they left, ‘Why won’t you just come and get me, and take me to get something to eat with you, instead of only just stopping by?’” So he let them know how he felt. “And once my friends understood that I wanted to hang out, and come out, and do different things, we started to actually go do those different things.” Butt says Johnathan’s experience is typi- Mention This * cal of the way strong friendships can begin Ad and Receive to grow after a spinal cord injury — and of 5% OFF how the person with the disability usually must take the lead. “It is very important to be able to educate friends that even though how www.conceptsinconfidence.com someone with a spinal cord injury gets 2500 Quantum Lakes Dr. #214 from A to B might be transformed, and how Boynton Beach, FL 33426 they access social or work activities may (800) 822-4050 change, their heart and their brain remains *one time discount per customer the same,” says Butt. “And usually, so do their values, dreams, goals and humanity.”

40 NEW MOBILITY Nova’s husband Don called this friend He says it was hard finding genuine Nova the day after her surgery to inform her friends at first. about the fall and her diagnosis. “Don “Some friends were great, they were said she could hardly speak because she there taking all the blows with me, and was crying so hard. He tried to console really supportive of everything going on her and called her a few times after that and wanted to help with whatever they to give her updates on my progress,” she could,” Nick remembers. “Other friends says. “She sent a huge box of presents to just kind of disappeared, or started the hospital that I received a week after avoiding me in the hallways and not re- she heard the news.” turning phone calls. So, I pretty quickly “Almost six weeks after my surgery — realized who my true friends were, and when I was not drugged so deeply that people who were just there for their own I could not talk — I did the best I could selfish reasons. It was a great learning to write her a thank you note, and to call experience for me, as it kind of gave me her. For weeks, I only got her voice mail a good crash course on true friendship, and left countless messages. She never and the friends that stuck with me are called back.” has learned to focus on those who journey still around me today.” “It’s been almost eight years now since with her. “I am totally blessed with rela- One of those friends who stuck with Don reached out to her to give her the tionships that actually grew and intensi- Nick was Suzzi. And over time that news about what had happened to me. fied in the love expressed in friendships friendship bloomed into romance and My heart is broken, and I have tried every both new and old,” she says. “So, I have then marriage. way to give her reassurances about how chosen to focus on those relationships and “My wife and I were friends in high much progress I have been making. I also put all of my energy into honoring them school and ended up going to the same want to let her know I will still answer with reciprocal love and friendship.” community college, and during that time, any questions she has and try anything to our friendship turned into a relationship,” help her feel more comfortable with me.” Breaking Free of the Friend Zone says Nick. “We dated for six years, all Nova says that though she was not able Nick was 17 and still in high school when through college, and then we were mar- to recover that particular painful loss, she he was injured at the C5-6 level in 1995. ried the summer after I graduated.” The Para Ladder ® A Stairway to Independence The Para Ladder provides safe floor transfers for wheelchair users. Able-bodied users can go from the floor to standing postition.

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APRIL 2016 41 Suzzi says she’s a very strong woman and her marriage has only enhanced that strength. Nick and Suzzi were pals in “I believe that our relationship has only made high school and at the time of Nick’s injury. They have grown me a stronger person both individually and together through college, mar- together. I know that friends and family had riage and parenthood — and they are still best friends. questions at first about our commitment, but once they got to know Nick, they understood why we worked so well.” As with any successful relationship, Nick says a big part of theirs is communication. “We can’t avoid the fact that I’m in a wheelchair, I have a spinal cord injury, and there is stuff that comes along with that,” he says. “Early on, we really had to talk about how that had an effect on the relationship and how it could slow things down, or kind of hinder activities. But, we did a really good job of communicating, we’re very open with each other, very open about how she felt and also very open about how I felt, and it’s worked, it’s worked out really well.” Writing from Chicago, Illinois, Stephanie Lollino is executive producer at Facing Dis- ability for Families Facing Spinal Cord Injury (www.facingdisability.com).

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NewMobility.indd 1 2/15/16 12:19 PM PARA/MEDIC Fracture Risk and Treatment Options with SCI

By Bob Vogel

Q. I’m 57 years old, in my 40th year as a arren, excellent question. you’ve lost 32 percent BMD, which puts T12 complete para. Five weeks ago I was According to a 2005 research you in the “fracture threshold” (where a in my chair getting dressed with my left leg publication, “Pathologic Extremity minor fall or missed transfer can cause a crossed and resting on my right knee while Fracture Care in Spinal Cord break). A 50 percent loss of BMD is con- I put on my shoe. When I leaned forward to Injury,”D people with SCI have a 40 per- sidered the “fracture breakpoint,” where tie the shoe, I heard a dull pop and my left cent incidence of fractures to the lower minor incidents like stretching or even knee dropped. Within moments my mouth extremities (hip and leg). The article getting a limb caught in the covers while went dry and my heart started racing — I explains that the rate is probably much rolling over in bed can cause a fracture. knew I had broken my left hip. higher because fractures treated at non- It is important for a person to have At the emergency room, X-rays con- SCI centers are not reported. a basic knowledge of fracture manage- firmed I had broken my left trochanter (the The high fracture rate stems from ment with SCI because this is an unfa- bone that leads from the femur to the ball osteoporosis caused by chronic SCI, miliar area for many doctors and ortho- that fits in the socket) in two places. An says Dr. Douglas Garland, an orthopedic pedists, says Garland. In the event of a orthopedist said my fracture would heal surgeon and former director of neu- fracture, referring the treating physician on its own if I wore an orthotic brace and rotrauma at Rancho Los Amigos Rehab to “Pathologic Extremity Fracture Care [in kept my leg quiet for three to four months. Center. Garland, who has researched SCI SCI]” is a good idea, says Garland. Another orthopedist came in later and said and osteoporosis for the past 25 years, Although every fracture is unique, he could stabilize it by inserting a “long explains that the longer you have had Garland says most non-displaced frac- intramedullary nail” (long rod) the length of SCI, the more fragile the bones in your tures (when the bone is still lined up) my femur and running a sliding hip screw lower extremities become. He has creat- can be treated non-operatively with through an angled hole near the top of the ed a formula to determine the estimated pillow splints, immobilizers or careful IM nail to secure the trochanter and hip ball. bone strength — measured in bone bracing, sometimes custom made. Also, I opted for surgery and was up in my mineral density — in your lower extremi- he says it is important to be sure they chair and home, albeit slow and care- ties based on your age and how long are well padded and can be opened for ful, in five days. Unfortunately, within a you have been injured (see Resources). skin inspection. “In the case of femur month the sliding hip screw pulled out The average person with SCI loses 28 and some tibial fractures, intramedul- of the hip ball and the surgeon had to percent of their BMD within the first 16 lary nails can often surgically fix the remove it. The good news is he says every- months of injury. Around that point, fracture. This is preferred over screws thing is lined up and lots of new bone BMD loss slows down but continues at and plates because screws can pull out has already grown in. The plan now is to a rate of 1 percent per year. However, of osteoporotic bone.” keep the hip supported with pillows while the good news is BMD in the lumbar For a broken hip, the first line of treat- lying down and carefully supported while spine rebuilds, reaching normal within ment is still non-surgical. If the fracture transferring — he is hopeful it will finish 10 years of injury. In addition, for reasons stays in alignment, it can be supported healing on its own within a month. With unknown at this time, 30 percent of with an orthopedic brace and/or pillows SCI, how does one know which route to people with SCI gain back much of their while healing. The next option is securing choose when healing a fracture? BMD in other areas as well. the fracture with surgical screws — if this — Darren Osteoporosis is diagnosed when is done, it is crucial to avoid stress on the

44 NEW MOBILITY hip, especially any pulling, like letting the thesis — where the ball and stem go into the retaining ring limits range of motion. leg hang during a transfer. Not only can the femur).” Surgeons are now doing the Be sure to ask how much range of motion this pull screws out of osteoporotic bone, hip anteriorly (through the front of the hip your leg will have with a retaining ring, but muscle spasticity can stress screws capsule) versus posteriorly (through the especially because without sensation, if the and cause the same result. Spasms can rear of it). This makes such a big difference leg moves beyond the built-in stop, it can sometimes be quieted by injecting Botox because the incision in the hip capsule, rip out the entire cup. into the spastic muscles. even after it has healed, is an area of weak In the case of repairing a hip fracture, Treatment for a failed attempt at scar tissue that can stretch, and when that Garland reiterates the options in order of healing a hip fracture has changed. “The happens, the hip can dislocate. The usual preference: old fashioned rule has been don’t do area of stress for an artificial hip is on the 1. Manage with pillows and or splinting. a hip prosthesis (artificial hip) because posterior part of the capsule. By doing an 2. Repair with surgical screws. the risk of post-op dislocations was too anterior incision, the area of the capsule 3. Prosthetic hip (endoprosthesis) only. “If high,” says Garland. A girdlestone sur- (posterior) that is under the most stress is the endoprosthesis fails, you can always gery — removing the ball, smoothing the not compromised. go back and add a prosthetic cup. And if trochanter, and pulling muscle around “Another improvement is larger all of that fails, you still have the option of the end of the femur to create a cushion endoprosthesis balls,” says Garland. a girdlestone.” of scar tissue — was the only option left. A larger head means a tighter fit in This is a serious surgery best done by a the socket, which makes it more dif- Resources surgeon experienced in the procedure. ficult to dislocate. The combination of • “Bone Impairment and Spinal Cord However, improved technique and anterior incision and larger prosthetic Injury”: cirrie.buffalo.edu/encyclopedia/ prosthetics have now made artificial hips head means good range of motion and en/article/108/ an option for people with SCI. “A prosthetic reduced incidence of dislocation. • “Osteoporosis Update: Avoiding the hip in a person with SCI is now an option, An option that is frequently discussed Breaks”: www.newmobility.com/2009/12/ assuming the hip capsule is in good condi- in SCI chat rooms is an artificial hip with osteoporosis-update/ tion,” says Garland. “You can do two types artificial socket that has a ‘retaining’ ring to • “Pathologic Extremity Fracture Care in of repair — the cup and ball, or just the prevent dislocation. Garland recommends Spinal Cord Injury”: archive.scijournal. Newball. Mobilityt The ideal OCT way 2014 to do 6000TRS_mm_346.qxd a prosthetic in a an 9/26/2014 in-depth discussion9:44 AM Page with 1an orthopedic com/doi/abs/10.1310/NNXN-FT78- person with SCI is just the ball, (endopros- surgeon before doing this option because EAC6-A6EJ

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APRIL 2016 45 INNOVATIONS Traveling Mobility Technology

By Mark E. Smith

hen it comes to traveling with chair. From there, an impressively sup- The HD model features a 17.25-inch by complex mobility needs, it can portive integrated seat — which accepts 17.25-inch seat size with a weight capaci- Wbe, well, complex. After all, a rehab cushion — and a supportive ty of 396 pounds. Weighing just 9 pounds power chairs and shower chairs can be footplate provide meaningful positioning more than the standard model, the stur- exceptionally cumbersome when it comes for a range of needs. Also, a conventional dier HD comes at a higher price point. to destination travel. How do we transport joystick is used. such necessities, and how do they fit into Now, here’s where the real technol- Taking the Convenience the logistics of where we’re traveling? ogy to the KD Smart Chair comes in. of Home with You Fortunately, companies are making Instead of heavy, conventional batteries, sophisticated travel products for those it uses 10 amp-hour lithium ion battery The MULTICHAIR with more complex needs — and at rea- technology, offering compact, ultralight 4000Tilt shower/ commode chair sonable prices. power up to 15 miles. To complement has up to 45 the lithium ion technology, small but degress of tilt. Power Chair Performance powerful brushless motors are used on in a Portable Package the drive wheels, allowing impressive The KD Smart Chair is revolutionizing torque and a top speed of 5 mph. travel mobility for many, including When you add it all up, the KD Smart complex rehab power chair users. No, it Chair offers phenomenal travel power doesn’t have power seating or such, but mobility. In certain situations where one it’s a remarkably highly-adaptable, well- might be limited to using a manual chair, performing power chair specifically made the KD Smart chair may be used instead, for travel. which then becomes an independence- The key to the 50-pound KD Smart game changer for many power chair users. Chair is its integration of state-of-the-art FDA-approved, the KD Smart Chair technology to create a balance of por- meets the safety, operation, and dura- tability without sacrificing performance. bility standards of conventional power Nuprodx is renowned for its ingenious, The power chair begins with an ultralight chairs and is available in two models. super-high-quality portable shower- aluminum frame that folds like a lawn The standard 50-pound model features commode chairs. Via an extremely quick, a 16.75-inch by 15.25-inch seat size with sturdy assembly process, you can click a weight capacity of 265 pounds and a together a shower-commode chair from price of $1,995. Ordered online and deliv- a travel bag in minutes. ered to your door, the KD Smart Chair is For those with more complex needs, well within the budget of most travelers. Nuprodx has introduced its tilt series, including the MULTICHAIR 4000Tilt. Like all others in the series, the 4000Tilt serves as both a portable shower and commode chair, but with the extraordinary feature of up to 45 degrees of tilt. Complete with user-adjustable positioning components — including leg rests, headrest, and seat- to-floor height — the entire chair weighs a scant 38 pounds and has a weight At just 50 pounds, the KD Smart Chair offers meaningful positioning and power, making it capacity of 300 pounds. Caster wheels a game changer for many travelers. allow for easy maneuvering.

46 NEW MOBILITY With an MSRP of $2,495, the can easily stow on the back of a power MULTICHAIR 4000Tilt is expensive, but it chair. Often when traveling, it’s a single is so well built that for some it’s a good step or two that prevents access, so hav- investment for both home and travel. ing such a portable, compact ramp is a vital tool. Have Ramp, Will Travel The Suitcase Singlefold GF ramps There’s nothing new about folding, aren’t inexpensive, and the price increas- portable aluminum ramps. And if you’ve es with length. However, through repu- used one, you know that while they’re table online sites, you can get the smaller effective, there’s also nothing new about sizes for around $500. their drawbacks — they can be heavy, cumbersome and noisy. The Suitcase Singlefold GF series uses graphite Ready to Go! EZ-Access, a leader in aluminum fiber to make very sturdy ramps that are lighter With a portable power chair, a shower- than aluminum. portable ramps, recently introduced its commode chair and a handy ramp, Suitcase Singlefold GF series. The Suitcase and smooth edges. The grip-textured you’re ready to hit the friendly skies — off Singlefold GF is short for “graphite fiber,” surface provides excellent traction. The to your dream destination. However, I do a super-strong, ultralight composite Suitcase Singlefold GF ramp is available have one last tip: if you’re going some- material. The result is a ramp that’s half in five sizes ranging from lengths from where tropical, take me with you! the weight of most aluminum ramps, 29 inches to 81.75 inches, all with the along with equal or greater strength. impressive 660-pound weight capacity. Resources For example, the 34.75-inch long ramp Where the Suitcase Singlefold GF • EZ-Access, 800/451-1903; www.ezac- weighs only 9 pounds and has a weight ramps become especially useful for trav- cess.com capacity of 660 pounds. elers is in the smaller sizes. The 29-inch • KD Healthcare, 877/827-6278; www. The Suitcase Singlefold GF ramp is version folds to 29 by 14.5 inches by 2 kdsmartchair.com ergonomically designed, featuring a non- inches and weighs only 7.75 pounds. • Nuprodx, 707/934-8266; www.nuprodx. protruding hinge, sleek carrying handle, Both the 29 and 34.75-inch long versions com

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APRIL 2016 47 ERVIN

Being crippled is like being Catholic. Once you’re crippled, you’re always crippled. By Mike Ervin

Mount Rushmore for Cripples

had no idea that Mary Tyler Moore feature Sammy Davis Jr., actors Sandy there are enough famous people with is crippled. But apparently she is. It Duncan and Peter Falk and glass learning disabilities to make three says so on the Internet, so it must sculptor Dale Chihuly. Chihuly lost an or four of them. They include Albert be true. eye in a car accident. I imagine his first Einstein, Whoopi Goldberg, Leonardo IYou can Google up one of those project after that was to sculpt himself da Vinci, Woodrow Wilson, Thomas lists of famous people who are or a new eye. Another candidate for the Edison, sculptor Auguste Rodin and were crippled, and there she is. It says One-eyed Mount Rushmore could be fairy tale guy Hans Christian Andersen. she has diabetes and that counts as Quintus Sertorius, the ruthless Roman And who could forget Diane Swonk, crippled, so we’re claiming her as one general who died in 72 B.C. Who says chief economist and a senior vice- of our own, whether she likes it or not. Mount Rushmore has to be limited to president at Bank One Corporation and And there is also Lucille Ball. According four heads? author of The Passionate Economist: to one of the famous cripple lists, she On the other hand, when it comes Finding the Power and Humanity Behind had rheumatoid arthritis as a young to the One-armed Mount Rushmore, the Numbers? woman and was unable to walk for there aren’t a whole lot of candidates. And when it comes to the two years. So we’re claiming her, too, U.S. Senator Daniel Inouye lost an arm Depression Mount Rushmore, don’t dammit! Sorry, Lucy, but you’ve been in a war, as did American geologist and even get me started. There have outed as a cripple. There’s no going ethnologist John Wesley Powell. I sup- been tons and tons of famous people back in the closet. It doesn’t matter if pose you could throw in Bob Dole. He who were depressed. Poet Theodore you got better. Being crippled is like didn’t actually lose his arm in a war, but Roethke was depressed, as is every being Catholic. Once you’re crippled, what was left of his arm wasn’t much poet. Playwright Eugene O’Neill you’re always crippled, no matter how good. A fourth popular choice might be was depressed, too, as is every play- much you try to insist that it’s a dark The Fugitive’s nemesis, The One-Armed wright. Some other role models for episode from your past. It says so in the Man, but he’d probably be tossed out the depressed are funnyman Rodney Americans with Disabilities Act. by the selection committee on the picky Dangerfield, actress Vivien Leigh, In fact, according to these lists, there technicality that he’s fictional. composer Robert Schumann, Winston have been so many famous crippled We have the same problem with the Churchill and Abraham Lincoln. humans that it’s impossible to create an Mount Rushmore stutterers. There’s Some famous cripples are inspiring crippled Mount Rushmore hon- only singer Mel Tillis, actor James Earl double dippers. Composer George oring the top four crippled role models Jones and that British king they made Frideric Handel was both blind and of all time. There’s no way to narrow it a movie about. We could complete the depressed, Ludwig van Beethoven down. So we have no choice but to con- stutterers Mount Rushmore by throwing was deaf and depressed, and Olympic struct several crippled Mount Rushmores Julius Caesar up there. He doesn’t actu- diver Greg Louganis is HIV positive representing the role models of the ally appear on any lists of famous stut- and learning disabled. Poet John many many subspecies of cripples. terers, but so what. Who’s counting? Milton is listed as blind and only Like for instance, there could be a But wow, when it comes to the blind, but you can’t tell me that guy One-eyed Mount Rushmore. It would Learning Disabilities Mount Rushmore, wasn’t also depressed as hell.

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