Happy 23rd Birthday to the ADA: Oh and People with a Disability Still Get Screwed

I am extremely cranky. In fact I think I can safely say I am mad as hell. I have exchanged more emails than I care to think about with regard to the October meeting of the American Society for Bioethics and Humanities today. I gave a paper at the ASBH last year and will do so again in Atlanta this year.  This should be a very simple process but it has been made needlessly difficult. The powers that be at the ASBH have decided the ADA does not exist. Today I wrote the following: 

I would like to point out the ASBH has no information about the ADA on their website. There is no mention of the ADA on the meetings page aside from a cryptic reference to "special needs". There is no point person to contact at the ASBH office. Questions about the ADA are ignored or one is directed to contact the hotel. No information about mass transit, buses, and how to navigate the city are provided. No information about how to navigate the hotel are readily available. No information about access when one is giving a presentation is available. No information is available about access near the Hilton. No mention of interpreters for the deaf or conference materials made available for blind members. All this information is typically provided by comparable professional academic organizations and has been the norm for over a decade.

I concluded my email: 

As a person with a disability I get the not so subtle message I am not just on my own but my mere presence is unwanted. It is as though the ASBH considers the ADA an odorous burden one that is conveniently ignored.  I find great irony in the fact this issue has been brought up today the 23rd anniversary of the ADA. It is my hope the ASBH will some day acknowledge the ADA is important civil rights legislation that they not only comply with but attempt to exceed in an effort to be inclusive to all people. Here is an even wilder idea: in two years the ADA turns 25 years old. Perhaps the meetings theme could be dedicated to disability rights and the ADA. Of course this assumes people with a disability can get in the door and encounter a welcoming environment that has yet to exist at ASBH meetings.

So on the 23rd anniversary of the ADA I have few nice words to express. I will not be doing any celebrating. I will not applaud the passage of the ADA nor will I slap disability rights activists and scholars on the back and say job well done. Instead I will think of the reaction to the Capital steps crawl. For those that have no idea what this was see the following link: http://www.adapt.org/freeourpeople/adapt25/narratives/15adapt.htm   This was a turning point in the lives of people with a disability. More than any single event, this tipped the tide in favor of passing the ADA. And yet at the time the crawl up the steps prompted anger more than support for disability rights among power brokers in Washington. The general public reaction was quite different and disability rights activists were galvanized. 

My thoughts though are grim. I am taken aback by the deeply ingrained ASBH hostility to inclusion and it highlights the limits of the ADA. More generally, I bemoan the fact the ADA has no social mandate. I bemoan the fact conservatives consider the ADA an odorous burden or unfunded Federal Mandate. I bemoan the fact those woefully unaware of the bias people with a disability encounter believe the problem was solved long ago. Afterall those blue wheelchair symbols placards are all over the place. Worse yet I am more fearful today of disability based bias than I was a decade ago. Like many other people with a disability I fear getting sick. I do not fear illness but rather our healthcare system. As I have noted before our health care system considers people with a disability an expensive drain on limited health care dollars. Insurance companies loathe our existence. Health care workers deem us unwanted extra labor. Some physicians want to end our suffering. 

On a day like today I am just mad. Perhaps I am furious. Here we are 23 years post ADA and barriers, social and physical, abound. Most alarming to me is the fact critical care centers, hospitals, are down right dangerous places for people with a disability. I saw this first hand in 2010. Thus I gave a bit of a shudder when I read Tim Gilmer's editorial, "No More Patient" in the most recent issue of New Mobility. I have decidedly mixed views about New Mobility. I will refrain from critiquing New Mobility because my issue is not with what it is but rather what it could be.  I should also note that I have taken Gilmer to task and he has always responded with grace and dignity. But what he wrote this month resonated with me. Gilmer is 68, a quadriplegic and has peripheral artery disease. He had a leg amputated last year. In short he has been through the medical mill like I was in 2010. 

Gilmer's editorial was about his most recent experience in the hospital with a serious leg infection.  He wrote that in six days he met 14 different physicians--an admitting physician, internal medicine physicians, internal medicine residents, a general medicine resident, vascular surgeon, and infection disease physicians. Of the fourteen physicians only four actually examined his leg. Gilmer estimated: "the grand total of medical personnel who proded, poked, and peppered me with the same questions over and over--as if none had taken the time to read my chart notes on any hospital computer, including the one in my room--totaled about 75". Think about this for a minute. 75 people in six days. One hears a lot about patient centered care and I recall reading the Patient Bill of Rights & Responsibilities when I was admitted. I doubt many people read this document. No single Patients Bill of Rights & Responsibilities exists. I have read about a dozen of these documents on line. They essentially state a patient has the right to be involved and direct their care. My question is pretty simple: how do you manage to direct 75 people one will see over a span of less than a week? How does on coordinate communication between 14 physicians in various sub disciplines? The answer is simple: patient care is at best disjointed and when one adds in a complex medical history often associated with disability, ingrained disability bias the result is patient care suffers. Suffer here means care is inadequate, mistakes take place, and hospitals routinely prematurely discharge complex patients. Gilmer wrote:

Two days after I was admitted, Doctor No. 15 cam in and announced I was being taken off IV antibiotics, put on oral meds, and sent home. I was woozy, feverish, leg red and swollen, blood work scary, lying in a pool of diarrhea. I railed, ranted, and recounted my entire medical history in detailed, graphic  examples, explaining to him the finer points of what it meant to be 68, spinal cord injured, with peripheral artery disease--until the color left his face. I guess this changed his mind.     

Gilmer and I were able to assert ourselves. This is great even though the psychic toll such encounters have are exhausting. I will readily admit in 2010 when I was seriously ill my encounter with a hospitalist shattered my confidence and made me wonder if my life had an redeeming value. It was in short a mind fuck of epic proportions.  And here is what keeps me up at night and fuels my anger. I am lucky. I had the ability to so no and say I want to live. Not all people can do this nor are all families as remarkably supportive as mine are. Thus Gilmer's editorial reinforced what I learned from my experience in 2010. Last year I wrote:  Disability, I have rediscovered, is a social malady. My forced dependency in 2010 made me realize the autonomy we Americans place such great value on is based on a very narrow definition. How do we measure autonomy, and more generally, what sort of lives do we value? Do we accept Peter Singer's utilitarian logic or address the literature produced by disability studies scholars who seek to broaden our understanding of life with a body well outside the norm? I would contend we are ill equipped to deal with disability, particularly when people such as myself and others with profound neurological deficits are in need of medical care. My words are way too kind and polite. I think it is fair to say lives are at stake and yet I wasted an entire day trying to educate people at the ASBH about the ADA. Really? 

A Good Idea at What Cost

Since I was ill in 2010 it has become increasingly difficult if not impossible for me to get from the floor back into my wheelchair. This is an important ability since I live alone and the reality is I fall out of my wheelchair. When I do fall I can get back into the wheelchair but it is a time consuming process and extremely difficult. Getting back into my wheelchair after a fall involves crawling to a couch, going from floor to couch, couch to wheelchair without a cushion, then from wheelchair to bed to put cushion under my ass. I do not recommend falling.

The struggle to go from floor to wheelchair is a first and foremost a safety issue. Yet it also infringes upon what I can do. Swimming, camping, and biking become problematic. The problem is as much mental as it is practical. Like many others I embrace an extreme form of independence.  I hate asking for help. I have mellowed a bit as I have aged thanks in large part to participation in adaptive sports.  When skiing for example I need help to get to the lift as well as help getting on and off said lift. There is irony here that I am well aware of.

I have racked my brain for ways to get from floor to wheelchair. Enter the Para Ladder. The Para Ladder is a great idea. I have seen ads and thought this is the perfect solution.  See http://www.paraladder.com/  Check out the photo:

This simple design solves my problem. Not so fast. The Para Ladder is essentially an 11 pound step ladder. It retails at various websites for $700 to $800.

Alternatives exist with slight modifications.  Here is a standard $70 house hold step stool.

Clearly this step stool is not ideal. The Para Ladder is a far better design. But it also costs $700+ I am happy to save over $600 and modify an inexpensive step stool. I can envision many ways to make a step stool work for my needs. If can figure this out I am sure others can as well.

Hoyer Lifts Versus Engine Hoists

Above is a hoyer lift. The hoyer lift also known as the patient lift was invented in 1955 by R.R Stratton. The design of what became known as the hoyer lift has not changed since it was invented. The idea for the hoyer lift was based on automotive repair shops. Engine hoists were widely used as an inexpensive way of lifting an engine out of a car. In fact in the patent Stratton identified the lift as an "automotive engine hoist". Today, hoyer lifts are used in virtually every hospital and nursing home in the country. Many variations of the hoyer lift exist. The legs of the lift are adjustable, a multitude of slings exist, and many are powered by electricity. In a clinical setting two people are supposed to be present when using a hoyer lift to transfer a patient. In the home setting one person can easily operate a hoyer lift.  Many companies manufacture hoyer lifts and multiple videos can be found at You Tube about how they are operated.  Cost depends upon the bells and whistles. Generally, hoyer lifts sell for as little as $1,200 and well in excess of $4,500.  The cost of the lift does not include the sling. Slings cost at least $150. 

It is one thing to state a hoyer lift is similar in design to an engine hoist another to see it.

The hoyer lift is institutional gray. The wheels are slightly larger and some padding has been added. But the mechanics of the design are virtually identical. In fact the engine hoist is far more powerful, that is it can lift more weight, than the hoyer lift. The engine hoist is fire engine red, a color that appeals to me.  Let me ask a simple question: which lift would you want sitting in your bed room? A brand new engine hoist can lift up to a ton. At a tractor supply store the cost would be $205. Used models abound for about $125. 

I would like an answer to a simple question: why is the cost disparity so stark? The design of a hoyer lift and engine hoist have not changed in decades.  A $200 engine hoist can lift a ton. A hoyer lift that can lift a person up to 500 pounds puts one squarely into the $4,500 and up price range. I am not an economist by any stretch of the imagination but this is wrong. And who is getting screwed? Who is being gauged? The most vulnerable among us, people who simply need help transferring.  

Durable Medical Goods Rip Off: A Series of Posts

I am going to start a regular series of posts about how people with a disability are getting screwed over by the cost of durable medical goods. This is an issue that has bothered me for thirty years and thanks to my good friend Rebecca Garden I am going to start to address the cost of being disabled in a series of blog posts. A bit of background is required. Within months of using a wheelchair I quickly came to two conclusions: first, anything remotely associated with disability was obscenely overpriced, uniformly ugly, and poorly designed.  Second, the experts, those charged with prescribing, selling and repairing durable medical goods, were at best incompetent and at worst crooks. For many years I had no choice; Everest & Jennings had a monopoly on the wheelchair market. However in the early 1980s rigid frame wheelchairs were invented. A critical mass of angry wheelchair users alienated by E&J began making and selling rigid frame wheelchairs. Dozens of wheelchair companies popped up and an equal number went out of business. Luckily I found a rigid frame wheelchair and quickly decided to opt out of the system. I have not bought a wheelchair in over 30 years. My only ties to the durable medical goods industry is through my ass. I purchase and replace Roho cushions on a regular basis.

I have a renewed interest in the durable medical goods industry because I am getting older. My wheelchair is indestructible but heavy. I am also not as rough on a wheelchair, and can envision a time when I will need a light-weight wheelchair to preserve my shoulders. I found a wheelchair that I think is revolutionary, a Panthera, made of carbon fiber. It is the lightest practical manual wheelchair manufactured in the world. I tested it and was blown away. It is a revolutionary design. The problem is the Panthera sells for more $10,000.  Put this price tag in perspective: I can buy a good used car for $10,000. 

So how over priced are disability related items you may ask?  I want to start out small. I will discuss mundane items on a wheelchair that will over time break down.  I am operating on the assumption the person replacing parts is somewhat naïve, relatively new to disability, and unaware of alternative (cheaper) resources. The costs I will list are generalizations. I have based my price estimates on different disability related websites. There is a degree of guess work involved. I must stress the following: I am not particularly interested in the details of price variation. Instead, I am looking at the bigger picture of how lives are profoundly impacted by the durable goods industry. The savvy buyer, likely a person paralyzed long ago, will know the industry well and find good bargains. Regardless, the price disparity remains startling.

Wheelchair tires and inner tubes.  At multiple bike stores on line I can order a pair of tires for $13.99.  Inner tubes are $4.95 each. In short for $25 I can buy tires and tubes and get them shipped to my home for free. A person new to paralysis will likely think I need to buy my tires and tubes from the wheelchair manufacturer. Big mistake. Order tires and tubes through Quickie, the dominant wheelchair manufacturer in the USA and one will pay dearly. Tires are $17 each, hence two tires are $34. Inner tubes are $8.  Shipping is not free. So cost went from $25 to over $50.

Paint. Few wheelchairs will ever need to be re-painted because they are not designed to last. So let’s say a person went on a trip and the airline chipped the pretty paint job on your wheelchair in a highly visible place. Quickie will be happy to sell you an ounce, yes one ounce, of touch up paint for $75. I scoured the Quickie website and could not find out how much it would cost to paint a frame. Again, it is my contention wheelchairs produced by Quickie are not designed to last hence there is never a need for a new paint job. In sharp contrast, my wheelchair frame was designed to last a life-time. I had three frames made about 25 years ago. One frame has been retired and the other two are in great shape. Every five years or so my wheelchair frame needs to be repainted as do the rims on my rear wheels and the footrest.  I bring my frame, rims, and footrest to a powder coater and the entire job takes two days and costs $125. More than an ounce of paint is used.

Wheelchair upholstery: I replace my wheelchair upholstery through a car or boat detailer. This costs about $50. The cost of wheelchair upholstery ranges widely from wheelchair manufacturers but one should expect to pay $100 a piece.  A set, back and seat, will cost about $200.

I have begun with the least expensive items and will work my way up the price scale. It is my belief that items deemed durable medical goods will be grossly over priced: the mark up extreme. In the future I will discuss high tickets items such as wheels, manual wheelchairs, lift systems such as hoyer and ceiling tracks, power chairs, portable wheelchair ramps, hand controls, van conversions, beds, home elevators and wheelchair lifts. For each item discussed I will offer an alternative. I will repurpose every day items that one could purchase at a hefty discount. The potential savings are staggering.  I will end with one example to wet the readers appetite. A hoyer lift costs at minimum $1,500 and ranges up to over $4,000.  The slings for a hoyer lift cost over $150. I have a friend whose hoyer lift broke. Insurance would not pay for a new lift. A rider was added to this person’s health insurance coverage and omitted certain durable medical goods. Such riders are now commonplace (my insurance added a rider last year eliminating coverage for organ transplants). My friend could not afford to spend thousands on a new hoyer lift and instead scoured the automotive section on ebay. This person bought a used engine lift for $125 (it was a cool fire engine red). He made his own sling made of a tarp and a cotton sheet for less than $20. It is the best and most reliable lift my friend has ever owned. It cost less than $150.