The High Cost of Standing

          The first time I operated an electric wheelchair, I slammed straight into my grandfather’s car, causing a sizeable dent before continuing forward only to collide with the tree directly behind it.  I had forgotten to buckle my seatbelt before beginning this adventure, so upon contact with the tree, I flew out of the wheelchair and hit the trunk.  My father was mortified at the damage I caused, my grandfather laughed uproariously, and all I wanted to do was continue to roam around and enjoy my newfound mobility.  In the wheelchair, I could be explorer, adventurer, rabble-rouser, and I imagined, go anywhere and do anything.  I even began plotting a course to Ohio, mentally mapping out my trip as a trek across the backyards of the suburbs of Western New York.  The wheelchair felt like a natural evolution, a progression towards integrated involvement that seemed to be my right as an individual.  It did not occur to me to consider the cost of this freedom and the logistics of its acquisition.  All of four years old, I instinctively assumed that wheelchairs were as commonplace and as affordable as a pair of shoes and were readily available to all who needed or wanted to utilize them.  Since then, I have acquired two additional wheelchairs, each with more nuanced features to accommodate my changing medical needs, and have discovered that electric wheelchairs unfortunately remain a luxury.  They are available only to those who can provide evidence for the “medical necessity” of the wheelchair according to the standards of government agencies who provide supplemental coverage and insurance companies who have their own separate set of standards.  The quality of life provided to the individual through the use of the wheelchair and the increased social opportunities facilitated by it do not factor into the equation.  All of these standards exist because the wheelchairs themselves are incredibly pricey and exist to serve a very specialized niche clientele, each with their own individual needs.

          The issue that arises from the medical necessity standard is that it often requires the individual to have experienced significant medical problems before applying for a wheelchair that could have prevented the severity of those problems.  For example, a wheelchair with a reclining or tilt function allows an individual to reposition in the wheelchair to reduce the occurrence of skin breakdowns which can lead to deadly infections.  However, if the person has not experienced any of these breakdowns prior to applying for a wheelchair with this function, then that person has to justify the purchase of the wheelchair based on that real but hypothetical risk or else prove that the wheelchair provides some additional benefit apart from its intended purpose.  This is where the conflict arises between medical necessity and an approach that values the quality of life over a strictly reactionary model.  The underlying issue that fuels the conflict is the cost of these wheelchairs, which retail for tens of thousands of dollars.  I wonder if the price of the wheelchairs is not in some way influenced by the presupposition that they will be paid for by insurance and government assistance.  I would like to think that some changes could be made in the way that the wheelchairs themselves are marketed, not as medical supplies but as competitive consumer products.  They could be more reasonably priced and perhaps tested by potential consumers, involving them in the development phases.  These products are unquestionably medical in nature and benefit, but also are so integral to the daily lives of millions of individuals who have disabilities, that to treat them solely as medical devices seems nonsensical.  The current system seems to only perpetuate a scenario in which wheelchairs will be reliably available to the exclusive few who can afford them or successfully navigate the minefield of institutional monetary support.  Having the clientele involved in the research and development phases would also give the customers a better understanding of the costs inherent to the production of the wheelchairs.  At present the current system feels detached, impersonal, and as though it takes clients for granted.

          About a year ago, when I started intense physical therapy, I noticed that my current wheelchair was in a state of disrepair.  I purchased this wheelchair in 2005 and was able to get reclining and elevating functions covered by a vocational agency based on the need for these features as they applied to my lifestyle (enrolled in undergraduate studies at a small university with limited accessible facilities).  However, I could not guarantee the same coverage on a new wheelchair because I had since completed my undergraduate degree and was still exploring the options for further education and career advancement.  So, using the results of my physical therapy, and especially the extent to which I was now able to tolerate standing for a period of 15-25 minutes, I applied to purchase a new wheelchair with a standing function.  With these results, I could justify medically the need for a new wheelchair that would allow me to achieve this status independent of therapists or other specialized equipment which I could not operate autonomously.  On the basis of this purely medical application, as well as a specific evaluation preformed in-home by a physical therapist, I was able to get the wheelchair approved.  While I do relish the medical benefits of weight-bearing and standing, the standing function of this wheelchair offers a whole new world of social experiences that far outweigh a detached, clinical analysis.  With the standing function, I will be able to stand up and shake someone’s hand at a business meeting, hang out at a bar, use a urinal, slow dance with a lady, or look someone in the eye and allow them to reciprocate without looking down at me.  I have wanted to be able to do all of these things and more my entire life, so the benefit cannot be overstated.  Further, these are the types of things I would’ve liked to have been able to include in my application to justify the wheelchair’s purchase, but could not because they were not strictly medical. 

          These details of my personal journey dovetail nicely with the current national discussion on the role and size of the government as it pertains to providing services and monetary support to individuals that could improve their quality of life.  Debates on government spending are currently framed in simple monetary terms, which exclude the human impact that these decisions have.  If funding suddenly ceases then private manufacturers of wheelchairs and similar devices would be forced to reassess the ways in which they interact with their clientele.  The effect of a loss of funding would be dramatic and have dire consequences for millions of Americans.  Without funding, these individuals would not be able to afford wheelchairs or therapy sessions or medical devices or medications and the result could be deadly.  The time for this discussion is now, before cutbacks and costs become so mutually prohibitive that a nightmare scenario becomes a reality.

          Faced with these problems, manufacturers must change the ways in which they interact with customers now.  They must look at alternative pricing options that do not presuppose government assistance.  If these prices are not inflated by the aid assumption, then companies should invest in ways to make high quality wheelchairs cheaper and more affordable, so that the purchase of a wheelchair becomes possible for an individual who does not receive government assistance.  Since these products do provide tangible medical benefits that are not attainable through other means, it is not reasonable for the customer to simply go without in protest of high prices.  Changing these business practices will save manufacturers from collapse should government funding be dramatically reduced or eliminated.  It is in the mutual best interest of the customers and the industry that the manufacturers are able to proceed even without funding for individuals.  Customers and manufacturers need not be antagonists in this relationship, they can work together.