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Monday, March 21, 2011

Wheelchair Industry: Quality Absent

I opted out of dealing with wheelchair companies 25 years ago. This was an easy decision to make. Manual wheelchairs as most readers are likely to know are costly--easily exceeding $3,000. What does one get for this money? Not much. I think the vast majority of wheelchairs manufactured today are poorly designed and contain inferior parts, especially things you do not see like wheel bearings. No mass produced wheelchair can withstand the rigors of every day use. Worse yet, the services wheelchair companies provide is laughable. Durable medical equipment vendors provide dismal service at best. Do not believe a word RESNA, Rehabilitative Engineering and Assistive Technology Society of America, states about so called seating specialists. There is a shocking lack of competent people who can help consumers pick out an appropriate wheelchair. To be fair, I would include specialists in rehabilitation such as occupational and physical therapists among those that do not possess adequate knowledge. Getting the right wheelchair is extremely difficult. Mistakes are costly and here I am not just referring to the financial implications. An inappropriate wheelchair can result in a myriad of health related problems. Specialists can be found--most likely at larger rehab centers but I have never found one myself. I will acknowledge some people are well versed in wheelchair technology and have the experience of working with an array of people that need a wheelchair. Sadly, most people who have a spinal cord injury do not have access to these professionals. Adding to the problem is the fact the sort of comprehensive long-term rehab I experienced in the late 1970s is a thing of the past. Sure wheelchair technology and medical care have undergone a revolution since I was in rehab but there are disturbing aspects to the wheelchair industry and modern day rehab. Frankly, most people leaving rehab centers today are grossly unprepared to care for their bodies and the social response to their newly disabled bodies.

These thoughts have been coursing through my brain after reading a wonderful article in Sports N Spokes: "Chair Shake-Up" by Rory A Cooper and Rosemarie Cooper. This is a highly unusual article for the magazine to publish. It is filled with insightful observations and contains a social critique. Do not misunderstand my comment as a cheap shot at Sports N Spokes—it remains the best magazine published about adaptive sports. What separated this article from others is the critique of the wheelchair industry. This critique takes place at a critical juncture in time: the demise of high-end wheelchairs. This is an alarming phenomenon even if it does not directly affect me.

In 2010 Invacare and Sunrise Medical, the biggest manufacturers in the business, each stopped producing most of their titanium wheelchairs. They now make a plethora of crappy, i.e. cheap, wheelchairs that can be bought at a discount on line at sites such as SpinLife.com. The dearth of high-end wheelchairs however is symbolic of a larger problem--people who use a wheelchair are simply not valued. By high-end wheelchair I am referring to a wheelchair that is lightweight and tough--one designed to last a decade or more under rigorous everyday use. The rigorous use I am thinking involves extremes of weather and terrain as well the ability to absorb the abuse dished out by airlines and the constant assembly and disassembly required to get in and out of the car. Such a wheelchair has high quality wheels, rims, hubs, and a top-notch paint job (powder coating). Most mass produced wheelchairs will crumble under such use.

How do I test a wheelchair? I take the frame and throw it out a third or fourth story window. If the frame survives it is good to go. I sincerely doubt any wheelchair made by the mega conglomerate Sunrise Medical can withstand my quality test. This is a huge problem. What I wonder does a young male or female 20 years old with a spinal cord injury do? We guys, and yes gals, who use wheelchairs our entire life depend upon our wheelchairs. When they stop we stop. By extension, this has me wondering how do newly paralyzed people learn to cope with a spinal cord injury? When I was injured I learned far more from my paralyzed peers than I ever did from the doctors, nurses, and therapists charged with my care and supposed rehabilitation. Hence when I went to college fresh out of rehab the best education I got in terms of how to cope with the real world came from my peers.

Paralyzed people today do not get much time in rehabilitation. When I was paralyzed rehab stints of 6-9 months were common. Today, if you are lucky you get three weeks. No one in the olden days was sent home until they had their own wheelchair. When that wheelchair arrived it was a glorious day! Today, people are routinely sent home with a loaner wheelchair, a total piece of junk. They struggle as a result. The vast majority end up back in the hospital. Is this progress? Well no. This is done at the behest of insurance companies and affects not just people with spinal cord injury but a host of people foremost among them the elderly. I can only conclude our existence is not deemed important. You get a few weeks of rehab and if you do not progress it is off to the nursing home. Indeed, the average age for people admitted to nursing homes is now dropping. And who ends up there? People with spinal cord injuries. Do they get proper rehab? Not a chance. They are warehoused and unlikely to ever emerge from the institution they are sent to.

I mourn for my newly crippled peers. They are not given a fighting chance to succeed. In fact, they are set up to fail. How can a newly paralyzed person succeed with a crappy loaner wheelchair and three weeks of rehab? How can they learn how to manage their bodies without talking to those that learned to adapt long ago? The answer is they cannot. I learned how to manage my bladder and bowels by talking to other paralyzed guys. I did not learn one practical thing in the hospital. What I found in the hospital and subsequently in college was camaraderie. I learned much from peers and we were part of the pre ADA generation that had no civil rights and in its absence railed against prejudice. Not all of us succeeded but we all had a fair chance. That is all I want for paralyzed people today—a chance, a legitimate chance.

The only way paralyzed people can function is with top-notch wheelchairs. I was very lucky in that I was paralyzed at a time when wheelchair innovation was actually taking place. The monopoly that Everest & Jennings enjoyed for decades was broken in the late 1970s. For the first time in history paralyzed people were given a real choice when it came to wheelchairs. From this void emerged rigid frame wheelchairs that dominate the market to this day. What I am waiting and hoping for is another such revolution in choices. I do not see that happening though. Instead the wheelchair market is taking a giant step backward—pun intended. Wheelchairs are not designed for rigorous use but to the dictates of insurance carriers. Those insurance carriers do not care one iota about the quality of life of people that use wheelchairs. I care and am very sad. I figured a way around the practical problems of inferior designs and lousy service. My solution though is a solution for one—me. This bothers me for I worry. How do my paralyzed peers can function when restricted by insurance carriers and a lack of top quality choice? This is an issue that must be addressed at the highest levels of industry and government. We paralyzed people need access to not only quality wheelchairs but also technological innovations. Without it we are doomed to fail. I for one do not accept this reality.

18 comments:

Becs said...

Ironically, it seems now that the only places that accept people for long-term rehab are the VA hospitals.

John Hockenberry writes in his autobiography that he was in rehab for a long while (likely in the mid 1970s). Not only was he able to get accustomed to his changed body, but also to the realities that it brought. He had time enough to recognize that his life was no longer going to go on the course he had set.

My late mother-in-law was being sent home from the rehab facility (there all of two weeks) and was unable to take care of herself. The county, which is responsible for setting up home care, etc., called me, a thousand miles away and asked me when I was coming to take care of her.

As for insurance, Heaven help you even if you have it. If you are lucky enough to make a moderate income, chairs can still be priced out of your reach, leaving you at least $2K - $3K short.

Kevin said...

I couldn't have written it better myself. After 20+ years as a para and on my 7th or 8th chair I'm right there with you. I was hoping that my newest TiLite ZR2 would be an improvement over my 5 year old ZRa, which as was a great chair and a huge improvement to all the Quickies DME's had put me in before. Sadly I've had numerous problems with this ZR2 and if the size of the old ZRa was right I'd went back to it.

pam said...

It is a crime that those that need it most, are given the least. I remember when the big push was for wheel chair ramps, and wheel chair friendly doors. Being able to be mobile should be a right, not a privilege!

Wheelchair Dancer said...

Preach it!

WCD.

Huge smile.

william Peace said...

Becs, You are correct only vets now get comprehensive long term rehab. Rehab today is done assembly line style--move the person along and ship them out. There is no compassion or care. Most people cannot afford the wheelchair that best suits their needs.
Kevin, Your words mean a lot to me as they come from experience. Let me do a little general math--you have had 8 wheelchairs at about $2,000 a pop totaling $16,000. Imagine if you could buy a wheelchair that lasted 10 years. Powder coat it every few years and replace parts that wear out. How much would have been spent? Substantially less. The entire industry needs a radical over haul and establish appropriate repair support services. As of today such services do not exist.
Pam, You use the word crime. I find it sad that people who use a wheelchair are not valued. Newly paralyzed people are set up to fail. Without proper wheelchairs our lives grind to a halt.
WD. I was thinking of you when I wrote this. Wheelchairs can be designed to be rugged, functional and aesthetically pleasing. This can be accomplished. Sadly there is no desire to do so within the industry.

tooley said...

It never ceases to amaze me how bitter individuals start blogs to discuss issues like this but delete any comment that goes against their viewpoint. Very one-sided and the people you are trying to convince will see it as such. As I said in my previous post (deleted) - it's not your disability that makes you "not matter", it's your attitude.

william Peace said...

Tooley, I deleted your earlier comment under a different name because it contained nothing of substance. I have left many comments in which individuals vehemently disagree with me. I fail to see how I can productively reply to being called bitter.

Dave said...

Sadly it does appear that we are in an era of decline rather than advancement when it comes to wheelchairs, other DME and home care in general.

* Payers (insurance, medicare, medicaids, etc.) are focused on cutting costs.

* Manufacturers have not incentive to innovate. If they build a better mousetrap they won't get any more reimbursement for it... probably less and the reimbursement rates on existing products is a perpetual target for restrictions to coverage and cuts to reimbursement.

* Providers are feeling the same pinch. It is more and more common that a provider's reimbursement is cut at the same time that the requirements to get paid, and the time it takes to get paid, only increase.

* Clinicians have less access to the variety of training / education, products, services, etc. that they need to identify and address the individual's needs.

* Ultimately it's the user that suffers...

What makes this all the more frustrating is that home care should be part of the solution to spirling health care costs. Yet, because this sector has the smallest voice it tends to be the target. Granted that there are a lot of unethical groups and individuals in the home care sector... but it certainly doesn't monopolize the market for bad eggs. I fear what the future holds until we can overcome a paradigm where health care continues to be controlled by those with the deepest pockets.

william Peace said...

Dave, You raise excellent points. You saved the best for last--home health care. Living in your own home is empowering and the ideal we all should aspire to. However, home care is woefully inadequate, support services grossly lacking, and gets no support. In fact the only institutional acceptance of home based care seems to me to force people out of hospitals as quickly as possible. In some cases too soon. In the case of rehab, way, way too soon.

Cait the Wild Guitar said...

Hi everyone. I can only imagine what it must be like to have a basic need for something that you can't find or afford. I completely concur that big corporations are shockingly greedy & lacking in ethics. BTW, I just wanted to let everyone know that you don't have to be stuck with stuff you think is ugly. I'd be delighted to help you paint & otherwise customize your canes, crutches, wheelchairs, other DME stuff, etc.! I'm a professional artist, & I'd be happy to answer any sort of painting/artistic questions you have. Painting your own stuff is lots of fun, very easy, & surprisingly inexpensive! My email address is in my profile. Don't be afraid to contact me- we can share the joy of art!
Bill, I just want you to know that I love your attitude & plenty of people, myself included, support you, & we're behind you 100%!

e said...

Bill,

Thanks for writing this post. My TiLite, purchased in late 2009, has a horrible squeak that nothing seems to ameliorate. My vendor and rep have been unresponsive and it has taken them 3 weeks to tell me that I need a script from my doc in order for the repair to be put in to insurance. I am now waiting for the doc to fax a script to them.

I wish I could just deal with Tilite directly as this is a rigid frame and nothing is broken. As you and others I know have pointed out, DME and insurance are profiteering rackets that do not care about wheelchair quality or wheelchair users. I have had this chair less than two years and this is the first problem I've encountered.

When I asked whether this might be a bearing problem, the vendor from whom I purchased the chair said the bearings are sealed...


I'll see what the repair people come up with. If you're correct and the quality has gone down, I can expect a good fleecing more than once.

william Peace said...

E, Any squeak from a wheel is not good and should be addressed before a bigger problem brings you to a grinding halt. The squeak could be many things from the bearing to the bushing. I would suggest bringing the chair to a good bike shop. I have had great luck with my local bike shop. The savings are significant and bike shops tend to think it is cool to work on a wheelchair. The sad fact is DME providers know little or nothing about wheelchair repair.

e said...

Hi Bill,

I wanted to let you know what happened with my Tilite repair. The vendor company has a repair department. After several calls and a script for the repair from my doc, a repair person showed up at my door in a rain storm and fixed my bearing problem as well as tightening the spokes on the affected wheel. My cost was 62.83 and the repair person, who has done this for many years, told me the same thing you did: Find a good bike shop and you'll save money. I commended him on his honesty and I would also like to thank you for that tip and others. I am a chair user of less than two years and there are many things yet to learn.

william Peace said...

E. How thoughtful to keep me posted. Just two years using a wheelchair--my you are a baby! Go to a few bike shops and I am sure you can find someone to work with--think about establishing a long term business relationship. Here is free advice--keep extra inner tubes, tire irons, and a good bike pump in the house (and the car too). Also buy a spoke wrench--they are cheap. None of this costs much and takes care of basics. I have a little kit in my house that is easily accessible. Glad things worked out.

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Monkey D. Luffy said...

Man it's really hard for those who are wheelchair users... The wheelchair must have the quality to carry the disabled persons.

Lana DelRey said...

As far as medical equipment and supplies go, wheelchairs are one of those things that are easy to get wrong. It's not a one-size-fits-all but it can be expensive purchasing the right type of wheelchair for the right person. My dad had to suffer through a generic hospital chair for two months and it gave him back problems.

Rio Jamapa said...

I have been looking for a wheelchair for my 83 year old father-in-law and I am both surprised and disappointed by what I have encountered. The issues that I have read here need a much broader audience. What are the wheelchairs favored by the VA hospitals? And is it true that Everest Jennings sold out and the wheelchairs marketed under that name are really inferior? I have seen them advertised by WalMart (a big warning sign) at less than $200. It is sad to think that profit is more important than people.