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Wheelchairs: Are We in
The Dark Ages?

Reprinted from PN March 2011

Some alarming changes took place in the wheelchair industry recently, and most wheelchair users may not even be aware of the impact these changes will have on their lives.

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As happens at times in history, the nexus of two events causes dramatic transformations to occur. We may be entering one of those times. What are those two events that are cause for alarm?

First, Medicare has started to interpret more strictly its own regulations for eligibility for manual wheelchairs, while at the same time introducing competitive bidding for suppliers to provide wheelchairs in various regions across the U.S. Second, in response to pressures from payers and suppliers, U.S. manufacturers are reducing their product lines and eliminating some of their best chairs.

What does all this mean? Medicare has long had problems with fraud and abuse in the area of durable medical equipment (DME), the category wheelchairs fall into. This is a shame for two reasons. A few “bad apples” milk thousands, if not millions, of dollars from the government at the expense of taxpayers and people who legitimately need wheelchairs. And second, wheelchairs for individual use should not be—or probably never should have been—classified as DME. The more appropriate classification would be “Prosthetic or Orthotic Devices,” where prosthetic limbs and pacemakers and other similar mobility, functional, and life-saving equipment are categorized.

Wheelchair use was once—likely due to ignorance—thought as failure to be successfully rehabilitated and the final step toward ultimate demise. Although this has certainly not been the case for decades and likely never was an accurate assessment, it has made it an uphill struggle for individuals to obtain the most appropriate wheelchair. The concepts of (1) individualized fitting, (2) more recently personalized design, and (3) only in the past few years focused skills training, are not well accepted throughout the medical rehabilitation community and are nearly totally foreign concepts to insurers. However, they are rightfully commonly accepted practices for prosthetic limbs.

No Justification

Despite common sense and thousands of scientific studies—some of them multi-site, well-controlled experiments—on the benefits of proper wheelchair selection, fitting, and training, insurers tend to dismiss study findings and argue there is insufficient evidence to justify providing ultralight wheelchairs. This is a common practice when actuarial data indicate that a class of patients, treatments, or devices cost insurers more than they would like. They do this because they believe they will save money, which is doubtful because they will likely defer costs until later down the road when more frequent repairs and replacement of the wheelchair is needed and when their customers develop more secondary injuries and more complex medical complications. People who study the insurance business call these “silos,” as the wheelchairs are paid from one silo and the medical care from another; few connect the dots to obtain the complete picture.

This problem has been a long time coming. With the notable exception of the Department of Veterans Affairs (VA), most private medical rehabilitation facilities have dramatically reduced the lengths of stay for people with traumatic disabilities, such as spinal-cord injury (SCI). Many people with progressive conditions such as multiple sclerosis (MS) never have inpatient rehabilitation.

For example, 30 years ago, people with paraplegia would spend 6 months in medical rehabilitation and learn to perform wheelies, climb curbs, conduct preventative maintenance, and receive driver training to include loading their wheelchair into a car. Today, the standard of functional rehabilitation is much lower and much quicker. A person with the same injury today is sent home in about four weeks, after learning only rudimentary skills such as self-care, and only the basics of wheelchair mobility. S/he would not likely even have his/her own wheelchair when sent home.

The norm is to provide a lightweight wheelchair (minimally adjustable axle, fixed backrest) just one step above a hospital transport chair as a loaner. In theory, as an outpatient, the person comes in a few hours a week for strength, flexibility, functional, and skills training.

A recent, yet-to-be-published multi-site study at the National Institute on Disability and Rehabilitation Research (NIDRR) Model Systems Center for Spinal Cord Injury provides some frightening results. Many people with paraplegia due to SCI who have received medical rehabilitation at some of the finest private (i.e., nongovernment owned/operated) facilities in the U.S. cannot perform wheelies or hop curbs, often have their anti-tippers still in the lowest position, have had frequent falls, and have experienced a high number of pressure ulcers between the time of discharge and when they are seen for a new chair (i.e., their second chair). This study exposes the harm that reduced lengths of stay has had on people with SCI, and likely many other conditions as well. People do not learn the life skills they need in medical rehabilitation to return to work or school, be productive members of society, or in many cases to simply stay healthy. Starting out life after SCI or any severe disability with an inappropriate wheelchair leads to a downward spiral.

When people come in to get their second chair and have the good fortune to find a therapist and physician with knowledge about wheelchairs, they begin another uphill battle. Although RESNA (the Rehabilitation Engineering and Assistive Technology Society of North America) has made a yeoman’s attempt to create the Assistive Technology Professional (ATP) credential and educate suppliers and therapists, the number of truly qualified people is still far too few and unequally distributed. Since consumers have likely been using an inappropriate lightweight wheelchair or an “off the shelf” model ultralight that was provided for them, their insurance (private or public) is not likely to approve the appropriate, properly fitted ultralight chair. The justification is typically that consumers, blessed by ignorance, could get around (albeit with pain, pressure ulcers, and only to a very limited extent) in their previous model. Wheelchair and seating clinics around the U.S., and now more frequently around the world, are noting this problem.

For a few years, filing an appeal to the insurance company with documentation from scientific literature and quoting from clinical practice guidelines such as those produced by the Consortium for Clinical Practice Guidelines for Spinal Cord Injury (see www.pva.org) would suffice. However, this is becoming increasingly difficult, leading to multiple appeals and, in some cases, face-to-face hearings.

Folks, these are the things we read about for six-figure experimental cancer treatments, and now insurers are applying them to wheelchairs often costing less than $5,000.

Fewer Choices

The situation became critical in 2010, when, sadly, Invacare and Sunrise Medical LLC independently decided to discontinue most if not all of their lines of titanium wheelchairs. Of course, this was done because of cost and the reduced number of units sold. Fewer consumers were simply unable to obtain their insurers’ approval for ultralight wheelchairs, and even more so, for titanium chairs. Also, few therapists can write an adequate justification. And, titanium costs a bit more than aluminum, necessitates tighter manufacturing standards, and requires a different approach for wheelchair design.

All these things add up to slightly higher costs. But, there is more to it than that; the bigger cost savings comes from reducing the size of the product line. Simply put, it is cheaper to make two models of wheelchairs than three. With fewer products come greater economies of scale, possibly a smaller work force, fewer fixtures, and elimination of fabrication processes. This may help manufacturers, suppliers, and insurers—but what about the consumer: you, the wheelchair user?

Where does it end? How little choice is enough? Do we have the right to full participation in society? Does ADA mean anything for the future of wheelchair users? Are we going to go back to the early 1980s when we had to buy a decent wheelchair out of pocket or raise money through charities and fund-raisers? In case veterans believe they are immune from these changes, when manufacturers produce fewer models of chairs, it impacts everyone.

It’s not just about titanium versus aluminum or steel or even high-tech composites. Excellent wheelchairs can be made from all these materials with creative design and good manufacturing processes. It is the lack of engagement of—dare we say respect for—the wheelchair user in this entire decades-long process that now seems to be getting down to the core of the very existence and value in society of wheelchair users. Manufacturers, like Quickie, that were once respected by and even to a great extent a part of the wheelchair-using community, have merged and morphed to be nearly unrecognizable. It is a shame that Sunrise Medical LLC, parent company of Quickie, felt compelled to post an “infomercial” on YouTube that provides the hidden message that “less consumer choice” is good.

Wheelchair users have been complacent and quiet too long. Some organizations—such as Paralyzed Veterans of America, Easter Seals, and others—have been fighting these issues for some time, but a grass-roots effort is needed.

Wheelchair users must become educated consumers. We need to:

- Carefully review our insurance policies and select companies that support our needs and encourage friends and family to do the same

- Collaborate with therapists and physicians who are knowledgeable about wheelchairs and their users and demand our healthcare systems give them adequate resources

-  Engage in the political process and inform elected officials about the impact legislative and regulatory changes have on wheelchair users and all Americans

Creative Thinking

Fortunately, there are still some innovators in ultralight-wheelchair design. A few products and concepts deserve to be highlighted for their creativity or interesting new features. The list is not intended to be all encompassing; therefore, a few deserving products may have unintentionally been missed.

- The Panthera X is an extremely low-weight wheelchair coming in at 4.2 Kg for a complete and highly functioning mobility device. With the wheels removed, it weighs 2.1 Kg, making it easy to load into a car. The key feature is the carbon-fiber frame that was designed from concept to complete product to exploit the properties of carbon-fiber. Attention was paid to every detail, to include the wheel-locks and the wheels. The result is an extremely light, agile, and fully functional manual chair that is sleek, stylish, and without compromise. The one down-side is that in order to achieve the extremely light weight and high performance, the Panthera X comes in only a few sizes and with limited adjustability. This is not a chair for novices but is something for experienced and highly skilled users to seriously consider.

- The Kuschall K-Series (www.kuschall .ch/en/start.aspx) wheelchair with carbon-fiber frame is practical, has clean lines, and can meet the needs of a wide range of ultralight wheelchair users. It is lighter than most of its competitors and helps to promote a positive athletic and successful image for wheelchair users while being a highly functional chair.

- The Quickie Q7 (www.quickie-wheelchairs.com/products/Quickie-Q7-27894.html) demonstrates that innovation can happen when using a familiar material like aluminum. The Q7 steps it up by using 7000 series aluminum with custom shaped tubing and components, termed ShapeLoc Technology. The result is one of the lightest mainstream wheelchairs that has a full complement of features and accessories.

- For people who want a chair that has some classic characteristics with some new twists, the BT-Mg-AS Magnesium from Lasher Sports (www.lashersport.com/products-btmgas.html) may be of interest. It is one of the few chairs made of magnesium, a very lightweight metal, and it is available with front and rear suspension. Lasher is also sought after by people looking for functional, artful wheelchairs’ cool machined parts to give their chair “bling.”

- The Armed Forces editions by TiLite (www.tilite.com/wchairs_ArmedForces.php) take a new spin on the existing line of products and honor the service and dedication of America’s military veterans. U.S. Army, Navy, Air Force, and Marine Corps versions have accurate digital camouflage upholstery, service emblems, and matching paint and anodizing. This is a great way for military veterans to continue to support their brothers and sisters in the armed forces. TiLite has gone the extra distance to make these chairs the complete package.

Manufacturers and suppliers who offer choice and are engaged with helping wheelchair users need our business. One thing is for certain: Sitting idly by only guarantees the situation will get worse.

Contact: rcooper@pitt.edu.

PVA and PN do not endorse products or services. Those listed in this article are for information only, as suggested by the authors.

 

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Wheelchairs: Are We in
The Dark Ages?

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