Important Reimbursement Changes to Consider When Choosing Your Next Wheelchair Cushion

Every wheelchair cushion has a finite lifespan and eventually, every brand, make and model of cushion will wear beyond its usability. When this happens the cushion no longer supports and protects your skin the way it was designed — putting you at risk of a pressure sore.  This is why it is vital to replace your cushion before it fails. Two important questions I’m frequently asked and have written about in the past are, “How often should I replace my cushion?” and “How often will insurance pay for a new cushion?” The answers to these two questions are linked. It is a good idea to replace your cushion as often as your insurance will pay for it. This way you are best protected with a cushion that’s performing optimally, plus you can keep your old cushion for back-up use.

The answer to “How often will insurance pay for a new cushion?” is a moving target, and in my opinion has moved in the wrong direction in the two years since I last wrote about it. In my September 2011 blog post, “How Often Should You Replace Your Cushion?,” Dave McCausland, senior VP of planning & government affairs for The ROHO Group explained that CMS (Centers for Medicare and Medicaid Services — the federal agency that decides how often Medicare will pay for a new cushion) said that in the past it was generally accepted that Medicare would pay for a new cushion approximately every three years, and Medicaid and private insurance tend to follow Medicare’s lead. To reinforce this position, back in 2004 when Medicare established the current policy for coverage and reimbursement of medical seat cushions, they stated that they did not anticipate that cushions could last the five years necessary to be classified as “durable medical equipment” (DME).  This was the justification that they gave regarding why a beneficiary must have, and qualify for, a wheelchair in order to get a seat cushion. They stated that since a cushion was not expected to last five years it had to be considered as an accessory to a piece of DME in order to be eligible for coverage and reimbursement. In this case the piece of DME that cushions were associated with was a wheelchair. However, recently it appears that Medicare is changing its position. I learned from Mr. McCausland that in recent correspondence and communication Medicare has indicated that they will require five years to pass before they will pay for the replacement of a cushion! Why they are making this change is anyone’s guess…

Another important change, as of May 1st, is that CMS has enhanced the definition of an adjustable skin protection cushion vs. non-adjustable cushion under HCPCS codes (Healthcare Common Procedure Coding System numbers — the codes used by Medicare for medical goods and services). The old definition was very subjective and vague. Under the new CMS definition, only cushions that contain a fluid medium (air, gas, liquid or gel) and that can be altered by addition or removal of the fluid (as in adding or removing air from a ROHO cushion) will be considered adjustable. The adjustable cushion definition also covers cushions in which the adjustment is done by adding or removing packets of fluid medium (such as adding or removing a gel pack under a gel cushion). Cushions that are custom fit and/or custom molded are in a different HCPCS category than adjustable cushions.

Cushions that are custom fit and/or custom molded are in a different HCPCS category than adjustable cushions.

An important part of the enhanced CMS definition of adjustable cushions is that the adjustment must be able to be accomplished by the wheelchair user or their caregiver with the items supplied when the cushion is delivered, and the adjustable cushion must be able to address changes in skin protecting/seating issues such as weight gain, weight loss, or muscle tone changes. CMS wants to ensure that when they pay for an adjustable cushion, it will protect a wheelchair users skin not just today, but months and years down the road.

CMS’ coverage criteria for wheelchair users to qualify for an adjustable cushion are the same as it is for a non-adjustable cushion. With the time to get a cushion reimbursed getting longer and longer, it seems only logical to get an adjustable cushion rather than non-adjustable. Five years between cushions is a long time, and seating needs are dynamic, not static.

In my personal experience with spinal cord injury (SCI) – I’m a T10 complete para – as well as the experiences of friends with SCI, by not having the “guywire” support of trunk muscles it seems more often than not our seating requirements change and shift a bit here, a bit there. An adjustable cushion addresses these changes; changes such as sitting more on one ischium. This is something that is easily caught during a mirror skin check and can be quickly addressed with an adjustable cushion. For instance, if I notice a bit of pinkness on an ischium during my evening mirror skin check, I will hop into my chair and push the green knob on the ISOFLO Memory Control® of my ROHO QUADTRO SELECT® HIGH PROFILE® Cushion, then put weight on the ischium with the pinkness to let some air out of that chamber.  When I push the ISOFLO’s red knob to lock the cushion in place, the cushion is now adjusted to put less pressure on that ischium.

An important caveat: Anytime the cushion you are using shows signs it isn’t doing an effective job of protecting your skin, for example you notice your skin remaining red after a day of sitting (another reason it is vital to do skin checks with a mirror each evening and morning), please see your doctor right away and get a seating evaluation, (SeeIs It Time To Replace Your Cushion?”)!

Be aware that the process of getting in for a seating evaluation and seeing if you can get approval of funding for a cushion that meets your changed skin protection needs may take months – months where a serious pressure ulcer could develop. Whereas with an adjustable cushion you can quickly adjust the cushion to adapt to the change, and the skin issue should vanish.

As always, when it comes to ordering a new cushion, it is vital to make sure the exact make, model, and size cushion are on all therapists’ and physicians’ prescriptions.

Last but not least, knowing that CMS reimburses a new cushion only every five years, it is important to make sure you get a quality cushion that will go the distance.  For a good look at an example of the stringent quality control, testing and tracking that a quality cushion manufacturer employs, as well as warrantee, repair and replacement policies, read “Why there is such a big price difference in medical products that look so similar?”

The article addresses important questions to ask when you are looking at a new cushion. When getting a new cushion that will be protecting your butt for five years it is important to do your research!

Questions you should ask include:

  • Is the cushion manufactured entirely at the manufacturer’s plant?
  • What kind of quality control does each individual cushion go through before it is shipped?
  • What is the return policy?
  • How is the manufacturer’s customer service?
  • Does the manufacturer maintain quality control over every aspect of its cushions onsite?
  • How long is the warranty?
  • Is the manufacturer continually improving the product?
  • Does the manufacturer include research papers about its product on its website?

Bottom line, as reimbursement time between cushions gets longer it becomes even more important to educate yourself about the cushion you choose. By taking the time to do your homework, and choosing a quality adjustable cushion that will last and address your needs, you are taking control of your health.

___________________________________________

Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

Is It Time To Replace Your Cushion?

February 12, 2013 by  
Filed under Guest Bloggers, ROHO Community News, ROHO Products

Guest blog post by Bob Vogel

“How do I know when it’s time to replace my cushion?” This is an important question that frequently comes up at consumer shows, a question that has a several answers.

The first and foremost reason to replace your cushion is if you have a change of medical condition that effects your skin such as weight gain, weight loss or if the cushion you are on is showing signs that it isn’t doing an effective job protecting your skin— if you start to notice your skin remaining red after a long day of sitting–insurance should pay for a new cushion with the proper seating evaluation.

This is why it is crucial to check the skin on your butt with a mirror every evening and morning—taking a few moments to do a mirror-skin check gives you the best odds of catching a potential skin problem early, before it progresses into a serious pressure ulcer.  If you start seeing a red area at the end of the day, it is important to tell your doctor and ask for a referral for an evaluation with a seating clinician—as soon as possible. Don’t wait!

This recently happened to me.  I’m 52 and in my 27th year as a T10 paraplegic and except for one tiny pressure ulcer right out of rehab I’ve had healthy skin.  But as we age our skin gets thinner. Lately I’ve noticed some redness on my left ischium during my evening mirror checks. I have a pelvic obliquity; my left ischium is slightly lower than my right. I tried readjusting the pressure in my cushion and doing extra weight shifts but the redness would return by evening. Although the redness blanched—turned white when I pushed on it with a finger and would disappear within 30 minutes– I knew I shouldn’t have any redness at all.

I took this very seriously. I know way too many wheelers that “never have skin issues” and felt they didn’t need to do mirror skin checks anymore.  Then somewhere 15 or more years after their injury they end up with a pressure ulcer, skin flap surgery and 3-month hospital stay.

The usual protocol in my case would be to phone my physician right away and get a referral to the first possible seating clinic. AND have the doctor emphasize, “there is compromised skin”.  This should get a timely seating clinic appointment because a new, properly fitted cushion is much cheaper than hospitalization and a skin flap.   If the seating clinic determined the cushion I was currently on was not adequate and I needed a new cushion, I would be sure to have them write that my skin is “compromised” on the Letter Of Medical Necessity.  As always it is important that the Letter Of Medical Necessity and cushion prescription say the exact seating needs; for example, ROHO® HIGH PROFILE® Single Compartment Cushion (4-inch).

I went through this once—26 years ago—with a tiny pressure ulcer due to the wrong cushion.  Because of the pressure ulcer I got a timely appointment at a seating clinic and Medicaid quickly approved payment for a ROHO cushion–an upgrade from the inadequate memory foam cushion on which I had been sent home from rehab.

In my current instance I was fortunate that I know a physical therapist that is an expert in seating and positioning. She took all of my seating information into account and suggested I switch to a ROHO® QUADTRO SELECT® HIGH PROFILE® Cushion, that has deeper cells than the ROHO QUADTRO SELECT that I was currently on. This would give me deeper immersion sinking into the cushion to provide more support in the areas surrounding my ischiums, and allow me additional depth to adjust the cushion so the left rear quadrant is significantly lower than the right without bottoming out—thus taking weight off of my ischium.  A disclaimer: Since I am in the ROHO elite program I didn’t have to get insurance approval.  Several weeks ago I received my ROHO HIGH PROFILE QUADTRO SELECT.  Evening mirror skin checks reveal success!  At the end of a long day my skin looks fine!

Another important reason to get a new cushion is time.  Every brand, make and model of cushion will break down over time. When this happens the cushion no longer supports and protects your skin the way it was designed—putting you at risk of a pressure ulcer.  Even if the cushion you are using is working fine, it is important to replace it before it starts to break down!

How often funding sources will reimburse a new cushion varies from one type of insurance to another.

In order to get a new cushion before your current cushion breaks down it is important that you are the squeaky wheel and ask about getting a replacement cushion. The way to do this is contact your local DME (durable medical equipment) supplier and tell them you need a new cushion. They will be happy to guide you through the step by step process of getting a new cushion, based on your seating needs, including gathering your insurance information to let you know how often your insurance will reimburse a new cushion.

If you don’t already have a working relationship with a DME supplier, locating one is your next step. ROHO makes this easy. To find a DME supplier go to www.therohogroup.com/where_to_buy.jsp and click on Buy from an Authorized Retailer Near You.

You can find Medicare DME provider(s) in your area by going to www.medicare.gov. On the main page pull down Resource Locator, scroll down to Medicare Supplier Directory, from there, type in your zip code and click submit. On the next page check Wheelchair Seating/Cushions and hit view results. The “default” setting on View Results is 10 miles — to find more DME supplier options it is helpful to expand the View All Suppliers Within (on the right side of the page) to a larger distance in order to find a Medicare DME provider that is also a ROHO authorized retailer.

It’s much better to be a proactive “squeaky wheel” and work on getting a replacement cushion while the cushion you are sitting on still provides proper support for your skin than waiting too long and risk developing a pressure ulcer because your cushion gets so old it is breaking down.  Plus, getting a new cushion while your old cushion still provides proper support means you now have a back up cushion—one you can use while cleaning your new cushion and/or to use on the seat of your car for extra skin protection while driving.  If your cushion is getting replaced, be sure that all of your paperwork specifies the exact manufacturer, model and size of the cushion you were fitted for.

Keep doing daily mirror skin checks and replace your cushion before it breaks down.  Stay healthy my friends!

 

___________________________________________

Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

Will 90210 TV Show’s Riley Be Hospitalized With A Pressure Ulcer?

December 20, 2012 by  
Filed under Feature Story, Guest Bloggers, Lifestyle

Guest blog post by Bob Vogel

Move over Artie Abrams from Glee, there is another wheelchair-using character on TV, this time it’s Riley Wallace, a 20-something paraplegic who was introduced this fall in the fifth season of 90210 on The CW Network. Unfortunately, like Artie, once again Hollywood ignored the talented pool of SAG (Screen Actors Guild) performers with disabilities who are wheelchair users and cast a non-disabled actor, Riley Smith, for the part. And once again, Hollywood misses the mark in many obvious areas, some which would surely land a real paraplegic in the hospital with a pressure ulcer.

From the moment Smith’s character “Riley”– a complete paraplegic with a low injury level that is at least a few years post injury—is introduced, it becomes apparent that the TV show didn’t bother to hire a consultant (an actual wheelchair user) to create an accurate portrayal of a paraplegic.  When we first see Riley, as an outpatient in a physical therapy gym, he is sitting on a wooden bench, doing bicep curls with his wheelchair nowhere to be seen. Are you kidding me?  Sitting on a wooden bench with no cushion?  And in a physical therapy gym, no less? Completely implausible.  Later in the scene, a physical therapist asks Riley if he is done lifting and brings his chair, complete with a foam cushion. No way a para would allow his chair to be taken away in this type of situation. . The obvious – a cheap foam cushion on the chair puts it over the top. How Riley has made it this long without a major pressure ulcer is beyond me. In real life, if a person with SCI (spinal cord injury) disregards their seating they will end up with a pressure ulcer—one that could be avoided. Perhaps this is what the writers are planning for thesixth season of 90210?  Will the storyline be that Riley develops a pressure ulcer, is hospitalized, and the wound causes an infection, drama building as he is near death from sepsis caused by the pressure ulcer?

“The portrayal is absurd,” says Tricia Garven, a physical therapist, masters of physical therapy/licensed (MPT/L), assistive technology professional (APT) and clinical applications manager for The ROHO Group.  “The reality is sitting on something unpadded, and sitting on a basic foam cushion on your wheelchair is a setup for a pressure ulcer and lengthy hospital stay, one that can easily run $100,000 or more.” Garven explains that because of funding cutbacks in the rehab industry, too many people are getting such short rehab stays they don’t fully learn you can’t sit on hard surfaces without a cushion.  “You may get away with sitting on a hard surface for a while, maybe even years but it is like playing Russian roulette, it isn’t a matter of IF you will get a pressure ulcer it is a matter of WHEN. The TV show does a serious disservice showing this,” she says.  “The same cutbacks result in people getting sent home without proper seating and positioning, a vital element because it is preventative — it helps prevent pressure ulcers and orthopedic problems” she adds.

Another area where the TV show misses is on Riley’s wheelchair. He is styling around in a properly fitted cool-looking wheelchair; except he is still using anti-tips! Seeing Smith try and play Riley as an active “in your face” heartthrob, wheeling around with anti-tips makes as much sense as an actor portraying an outlaw biker roaring around on a Harley with training wheels. He becomes more of a caricature than a character.

In interviews, Smith says his preparations for the show included the producers getting a chair two months in advance and he wheeled around his house and neighborhood.  Good start, but not obviously not enough–this reminds me of people that come up to me and say “I hurt my knee and spent a whole month in one of those [wheelchair] so I know what you are going through”.  Smith’s other preparation was speaking on the phone for two hours with Tiphany Adams from Push Girls. Wow, “talked with a para on the phone for two whole hours…”

“As an actor, from an actor’s prospective [wrong cushion, lifting weights on a wooden bench, anti-tips etc.] this is so frustrating because it just means the actor didn’t do his homework” says Tobias Forrest, an actor and singer-songwriter in his 14th year as C5 Quad who plays the character Greg in “The Sessions.” “Half of an acting job is doing the work to develop a background for the character I’m playing—if I’m playing somebody from Louisiana, I shouldn’t be talking with a Texas accent” he says. “I create a whole biography of them. I know their birthday, their horoscope, and the names of their parents. I know the life that they lived up until this moment.”

Forrest says he knows of at least five Screen Actors Guild actors that are paraplegics in the Los Angeles area that fit the bill for Riley’s character.  “When a non-disabled actor is playing a paraplegic they need to do all of the background work,” says Forrest.  “How were they injured?  What is their level of injury? Do they have spasticity? What kind of cushion do they use?  Do they know about things like avoiding pressure sores?  If they have anti-tips on the wheelchair, why?”

A great example of the kind of work that a non-disabled actor should do to play a wheelchair user is John Voight’s preparation to portray a paraplegic in the 1979 movie “Coming Home”. Rather than wheeling around and making a 2-hour phone call to a para, Voight spent months wheeling with other paraplegics at Rancho Los Amigos rehab center and worked with with Jeff Minnebraker, a rec therapist and L1 para.  Minnebraker was also hired as consultant and an extra for the movie.  The result was an amazing, very realistic character—a character that that won Voight an Oscar for Best Actor.

“The fact that they [90210 producers] didn’t even audition [SAG actors] in chairs is their biggest sin,” explains Allen Rucker, acclaimed author, TV writer-producer, Chair of the Writers Guild of America West, Writers with Disabilities Committee and Co-Chair of the annual Media Access Awards.  “Casting people, it has been my experience, do care. The Casting Society of America, the casting guild and part of the consortium backing the annual Media Access Awards, definitely cares and is always promoting diversity casting. Most casters and producers down here [in LA] are not evil people. They are often unenlightened, sometimes lazy, and always under tremendous pressure to deliver.”

Rucker says the best way to get Hollywood to change and cast actors with disabilities to play a person with a disability is to contact the production company.  The same holds true for discrepancies like sitting on a foam cushion or using anti-tips. Other shows like medical or crime dramas hire consultants to get details correct because if they don’t the studio hears about it from their viewers. They should be held to the same standard when it comes to portraying a character with a disability—if enough people contact them perhaps they will get the big picture and hiring actors with a disability rather than a non-disabled actor “playing” somebody with a disability—a move that makes a much more powerful and realistic performance.

When contacting a production company, be sure to let them know which show you are contacting them about.

The production company for 90210 is CBS Television Studios:

CBS Studios Address:

7800 Beverly Boulevard
Los Angeles, CA. 90036

General Phone Number:

323.575.2345

CBS Studios Website

http://www.cbs.com/

___________________________________________

Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at online.relations@therohogroup.com.

“Paraplegic” feels trapped in a non-disabled body

Guest blog post by Bob Vogel

Chloe Jennings-White, a Ph.D., chemist living in Salt Lake City, Utah, lives her life as a paraplegic — and wheelchair users, she also wears long leg braces that lock at the knee to enable her to ambulate with crutches. She is comfortable and happy as a paraplegic. However, when she needs to use the flight of stairs in her house, she gets out of her chair and walks up and down the stairs, with the leg braces unlocked, enabling her legs to bend at the knee. She drives, but rather than the slow cumbersome task of taking her chair apart and transferring it into the car, she stands up and walks to the back of her car and puts the chair into the trunk. The car she drives doesn’t have hand controls.

Like many wheelchair users, Jennings-White enjoys outdoor activities. While most wheelchair users employ adaptive equipment and arm power to engage in these activities, Jennings-White simply removes her leg braces and goes on 12-hour hikes in the woods and climbs 11,000-foot mountain peaks.

When she wants to go snow skiing, Jennings-White stands up, clips into her ski bindings and spends the day on the slopes as non-disabled skier — at the top of a ski lift she will hike a considerable distance in order to get to the best snow on distant, very steep expert runs or chutes — runs with rocks or cliffs on each side.

If this sounds confusing — it is — because Chloe Jennings-White is only pretending to be a paraplegic. She chooses to live her life as a paraplegic because she has a rare condition known as Body Integrity Identity Disorder (BIID) — characterized by, in her case, by an overwhelming desire to become a paraplegic. For her, using a wheelchair and pretending to be a paraplegic helps ease this desire.

As of late, Jennings-White has been making rounds on the media circuit, first in January, appearing in Taboo on the National Geographic Channel in the episode titled “Secret Lives,” then as a guest on the February 27th episode of Anderson — the Anderson Cooper talk show. On the shows, Jennings-White explains that using a wheelchair helps her deal with her BIID.

Jennings-White says she appeared on these shows to bring attention to BIID and to help others with the condition to let them know that they are not alone. For that, I applaud her efforts. I can’t begin to imagine how difficult it must be to have BIID. According to an article in Newsweek, MRI studies of people with BIID suggest the disorder stems from a problem with the right sphere in the brain’s parietal lobe, the part of he brain that constructs body image.

The term that people with BIID often use to describe themselves is transabled. In the Newsweek article, Dr. Michael First, a professor of clinical psychiatry at Columbia University in New York, says there are parallels between BIID and gender identity disorder (GID) in which people feel that the gender they were physically born with is not their true gender.

As a side note, Jennings-White used to be a man — something she openly discusses in her blogs at transabled.org.

In Taboo “Secret Lives,” Jennings-White explains that she truly feels like she is a paraplegic and feels like she is faking it when she isn’t in her wheelchair. “It (using the wheelchair) is like a temporary stopgap,” she explains. She goes on to say, “in order to live a completely fulfilled self-actualized life is — for me — is to be paraplegic.” She explains she has a desire to have surgery to become a full-time paraplegic. “When I have an operation to become paraplegic I think the eventual outcome will be that I will feel like a complete authentic person and very happy.”

That’s a terrifying thought.

In a chilling clip on Anderson, Jennings-White explained that in a 2006 she inured her back and a doctor told her she needed to get rods to stabilize her spine. She refused to get the rods, and skis aggressively in hopes of having an accident and re-injuring her spine enough to become a complete paraplegic!

The TV audience’s reactions and the comments on the website toward Jennings-White are incredibly angry. Although I think of myself as open minded and empathetic, I felt angry, as well, and I couldn’t figure out why. She is a person with very real psychological and neurological disorder, and using a wheelchair makes her feel better. Why should this bother me? It’s not like she is using accessible parking spot or anything. There are others with the same disorder, and she is putting herself out there in the media to help them. This is a good thing. Yet, I couldn’t put my finger on why this upset me.

To try and find my answer, I carefully re-watched Taboo “Secret Lives,” pausing to take notes. Then I went on the web and spent some time reading Jenning’s-White’s blogs and her responses to comments. Upon re-watching the Taboo “Secret Lives” episode, the first thing that I noticed was Jennings-White IS parking in accessible parking spots, complete with a parking placard! WHAT?!? The segment says she has a slight limp, and shows clips of her walking up and down stairs, and shows her hiking in the woods with no leg braces. Jennings-White describes going on 12-hour hikes. From blog entries and the web it is clear that she scrambles over boulders, she hikes up mountain peaks, hikes to, and skis down very steep, expert only ski runs. Yet, she needs a parking placard?!

Jennings-White’s “portrayal” of a paraplegic also creates misconceptions and reinforces stereotypes of paralysis, including the idea that being paralyzed is all about the wheelchair and not being able to walk. Using a wheelchair and walking doesn’t even make the “top ten” list of difficulties that paralysis presents. A glaring example of this is her “paraplegic disguise” consisting of a wheelchair, leg braces and crutches, but NO CUSHION! Without a proper cushion, a real paraplegic would be hospitalized with a life threatening pressure ulcer within days!

Moreover, Jennings-White’s media portrayal of somebody that uses a wheelchair, but can walk when they “really need too” adds more confusion and misinformation about paralysis. The next time you or I need a wheelchair lift, or an aisle chair and we are asked “can’t you walk ‘just a little bit?,’” we can thank her.

I got further angered at Jennings-White because, for a person who insisting that she “feels like a fake” anytime she is out of her wheelchair, and feels like a paraplegic trapped in a non-disabled body, she sure manages to get over these “feelings” quickly when she wants to go hiking, skiing, go up and down the stairs or load her chair in the car. I believe her BIID is real — but using a wheelchair and leg braces only when it suits you isn’t “being a paraplegic,” it’s just playing dress up.

In terms of being paralyzed, using a wheelchair and not being able to walk is just the tip of the iceberg. I suggest Jennings-White try experiencing the full paraplegic experience. If she wants to go up and down stairs, she should drag herself up and down with her hands. No walking her chair to the trunk to load it into the car. No walking, hiking, mountain climbing, skiing, “when she feels like it.” Get a professionally fit wheelchair cushion, do mirror-skin checks twice a day to avoid pressure ulcers. It is good practice—she will need it. She should manage bladder with intermittent cathing, or use an indwelling Foley. She should have a bowel accident or two — preferably at work — and see how “self actualized” she feels.

But the most egregious part of the National Geographic Taboo segment — the one that got me furious — is the suggestion that letting children see a person in a wheelchair may cause BIID! In the segment — at around 20:20 — the narrator says, “At Cambridge University Chloe has a successful career developing antipsychotic drugs. She has over two dozen patents to her name. So how does such an intelligent and successful women end up leading such an extreme double life?” Then we hear Dr. Michael First say, “The most common experiences — and this applies to Chloe — is early childhood exposure to someone with that disability. It’s very common for children to identify with roll models of a family member or a relative.” While this is being said, viewers see a close-up of Jennings-White’s face on the left side of the screen and a close-up of Dr. First speaking right side of the screen. Next Jennings-White says, “My aunt was paraplegic and, um, I would always be fascinated by her leg braces. She would come in to me and say these are silly things aren’t they? And I, what I wanted to say is, ‘No, I think they are lovely. I want them, too.”

WHAT?! If kids see us in our wheelchairs it might cause BIID?! Does that also mean that if a little boy sees a woman, he will want a sex change?

I hold a bachelor’s degree in communications, so I understand that there is no way of knowing what Dr. First or Jennings-White meant, but the way the show is edited sends a clear message, “Keep your kids away from people in wheelchairs, especially friends and relatives. If a child sees a wheelchair, it might cause BIID!” This is a horrible and damaging message. Imagine being a wheelchair user trying to adopt a child and the adoption agency or mother of the child up for adoption sees this!

Speaking as a wheelchair user that became a T10 paraplegic at age 25, I think about all of hard work and time it took to learn to live and thrive with paralysis. — even more importantly, the time and work it took to accept it, and move beyond it. It is unfortunate that Jennings-White’s condition appears to make her to constantly focus on the wheelchair and on paralysis because she feels fake when she is out of her wheelchair.

 

Information Links:

 

___________________________________________

Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at
online.relations@therohogroup.com.

5 lessons learned from 27 years of having an SCI

Guest blog post by Bob Vogel

This Friday, March 2, marks the 27th anniversary of my SCI (spinal cord injury)—T10 complete para—the result of a crash while performing aerial acrobatics on skis at age 25.

Each year when the anniversary rolls along, I honor it by taking a few moments to reflect on the amazing life and adventures I’ve had since my injury, as well as, odds and ends I’ve learned along the way. Here are a few random thoughts on life with SCI—things that have worked for me and things I wish I had known and/or would have done differently.

 

Random Thoughts—Things That Have Worked

1. The most important tool for healthy skin is a mirror-check twice a day.

An example of how a mirror check helped me avoid skin problems happened back in the mid 90s—a new cushion manufacturer offered me a demo of one of their cushions—a unique design that looked and sounded really cool and worked well for some people.

Before using the new cushion I had a pressure map reading (a system that displays areas of high and low pressure points—typical high pressure points are usually bony areas) done on it. From the pressure map reading, it looked good, so I gave it a try.

I did a mirror skin-check that evening and the skin on my butt was bright red—a serious warning sign. By the next morning the skin color had returned to normal so I figured I’d give it another try. While sitting on the cushion, I double-checked to make sure that I wasn’t bottoming out—and I wasn’t. After a few hours, I did a mirror check, and sure enough my skin was bright red and looked even worse than the previous night. I returned the cushion. If I hadn’t been in the habit of doing daily mirror checks, I wouldn’t have known the cushion wasn’t working for me. The first sign of trouble would have been a major pressure sore.

Another important reason to do a mirror check is because pressure sores usually occur with within the first years of the SCI, or 15 or more years after the SCI. The reason pressure sores often occur 15 years or more after SCI is that skin gets thinner and weakens as we age.

Too often I’ve heard of a friend that has gone years with healthy skin and no redness, and becomes complacent about checking. Without daily mirror-checks they don’t notice any areas of redness—a warning sign that skin, or posture has changed—and the red area continues to worsen. The first sign of trouble ends up being a major pressure sore and a hospital stay. Something that could easily be avoided by a simple mirror check.

 

2. Document medical issues for reimbursement purposes.

Often we wheelers become so adept at managing small SCI problems like minor pressure ulcers, or back or shoulder pain that we neglect to mention it our physicians. But we should. By making sure your physician documents—writes it down in your charts—any and all pressure ulcers, however minor, or back or shoulder pain, you have a written record in your medical charts, something that can make all the difference when it comes to time to request reimbursement for a specific cushion or wheelchair.

In my case, when I first got out of rehab I was sent home on a memory-foam cushion despite asking for a ROHO® HIGH PROFILE® Single Valve Cushion. Even though I was diligent about doing weight shifts, I got a small pressure sore within three months. Fortunately, I caught it during a mirror check and went to the doctor right away. After the pressure ulcer was documented, I was immediately approved for a ROHO and managed to heal it at home.

 

3. Connect with others with SCI.

Connecting and networking with other people with SCIs has been vital for me on many levels. It has helped me learn tricks and tips to living and thriving with an SCI. Being able to share thoughts and feelings, and get feedback from other people with SCIs helps put things into perspective.

Since I first attended SCI support groups in rehab, mentors with SCIs have had an important impact on my life. At the support groups, I was still trying to grapple with the idea that there is life after SCI, mentors would wheel into the support group and share their lives and what they were doing and show that life goes on after SCI. It is every bit as rich and exciting as ever.

When I first got of rehab, a hang glider pilot acquaintance, Dan Buchanan, who is also a T6 para, became a mentor to me and helped me with things from how to set up hand controls in my car and how to modify my hang glider with wheels, to suggesting foods and strategies to help avoid bowel accidents, and what to do when the inevitable accident did happen. Dan and I became lifelong friends and we still bounce thoughts and ideas off of each other.

Over the years, I’ve been very fortunate to form close friendships with others that have SCIs, to this day we often touch base to ask about or trade information on some type of SCI subject, or just check in to exchange thoughts and feelings. A perspective from a friend that has experienced similar feelings and or circumstances often makes all the difference.

Good places to meet friends and mentors with SCIs are at various adaptive sports and recreation programs in your area. Local Centers for Independant Living (CIL) often have this information, or simply do an online search for an adaptive activity you are interested and your location.

There are also plenty of online options and chat rooms share SCI thoughts, stories, ask questions and get mentoring advice and feedback from other folks with SCI. (See Resources)

A word of caution—just like anything else online, do not provide personal information for safety reasons.

 

Important Lessons Learned—Things That Didn’t Work

1. Get a second opinion for important medical issues

When it comes to important medical issues, it is very important to get a second and even third opinion. This is another area where networks of friends with SCIs can offer advice.

In 1989, I hurt my lower back while mono-skiing. A few days later it still hurt and I went to the ER. An X-ray confirmed that I had severely fractured my sacrum. I was advised to take it easy and the sacrum would heal on its own. Over the next few weeks my back got worse, I went back to the hospital to ask if I should be put in traction, I was advised it wouldn’t be necessary. I asked about getting a second opinion and was advised that wouldn’t be necessary that the doctor on my case was “the best in the business.”

Having a wide circle of friends with SCIs—like I do now—or the ability to bounce the question off an online group like CareCure Community or another chat room would have led me to seek a second opinion. Instead, I listened to the first doctor and didn’t pursue any further treatment.

It turns out I should have gotten a second opinion and should have been in traction—by not getting a second opinion, my spine fused in a crooked position. It’s something that could have been avoided by a second, or third medical opinion.

 

2. It’s important to ask a physical medicine and rehab (PM&R) physician to weigh on medical advice

In 2000, I fractured my right hip—the result of rolling over in bed with my feet caught in the corner of the covers, combined with osteoporosis—from 15 years using a wheelchair (see resources below)

I went to the ER and had surgery—four screws to secure my femur to the ball (trochanter into the ball). The surgery went perfect and I was released the next day. I asked the surgeon if I had any restrictions while healing. He said “Nope, it should be solid.” Unfortunately, he didn’t have any PM&R experience; he wasn’t thinking that with SCI the muscles surrounding my hip wouldn’t pull the hip together like they would in a non-disabled person.

Within a month, the screws pulled out and the hip came apart. My lesson—I should have asked a PM&R doctor to weigh in on the healing process. If I had, I wouldn’t have done transfers that pulled on the hip during the healing process and it would likely have healed just fine.

When the hip pulled apart, the surgeon said I could get an artificial hip. Not knowing anything about artificial hips I figured it would be a good option and scheduled surgery to remove the screws and put in an artificial hip the next week.

Luckily, I was learning my lesson about getting a second opinion. Two days before surgery I consulted with a PM&R doctor. He immediately referred me to surgeon versed in PM&R. The surgeon said that in my case an artificial hip would severely limit the mobility of my leg and cause a high probability of severe complications including hip dislocations and high potential for fracture in the middle of the femur. The artificial hip could have cost me the leg.

Instead I had a girdlestone procedure—the ball of the hip was removed. The procedure went well, and 12-years-later my leg is fine. Learning to get a 2nd opinion from a physician versed in PM&R saved my leg!

 

Resources:

Chatrooms/Forums/Message Boards

 

___________________________________________

Bob VogelBob Vogel, 51, is a freelance writer for the ROHO Community blog. He is a dedicated dad, adventure athlete and journalist. Bob is in his 26th year as a T10 complete para. For the past two decades he has written for New Mobility magazine and is now their Senior Correspondent. He often seeks insight and perspective from his 10-year-old daughter, Sarah, and Schatzie, his 9-year-old German Shepherd service dog. The views and opinions expressed in this blog post are those of Bob Vogel and do not necessarily reflect the views of The ROHO Group. You can contact Bob Vogel by email at
online.relations@therohogroup.com.

Next Page »