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Friday, May 24, 2013

New York Times MIsses the Point Yet Again: Inaccessible Doctor Offices


The New York Times published an article, “Disability and Discrimination at the Doctor’s Office” as part of its “Doctor and Patient section by Pauline W. Chen. See: http://well.blogs.nytimes.com/2013/05/23/disability-and-discrimination-at-the-doctors-office/ The article broke no new ground. It is in fact an emotional rehash of an article published recently in the Annals of Internal Medicine. Here I refer to “Access to Subspecialty Care for Patients with Mobility Impairment: A Survey”.  The authors of this study concluded what pretty much every person that uses a wheelchair already knows: doctors offices are not accessible. In the dry vernacular of a medical journal:  Many subspecialists could not accommodate a patient with mobility impairment because they could not transfer the patient to an examination table. Better awareness among providers about the requirements of the Americans with Disabilities Act and the standards of care for patients in wheelchairs is needed.

As I noted, not exactly ground breaking news. Not surprisingly women that use a wheelchair encounter the most difficulties (I consider women who use a wheelchair a minority within a minority as we men out number them by a wide margin). The article in the Annals of Internal Medicine found 44% of gynecology offices were not accessible. Other findings include the following: 22% reported a patient using a wheelchair could not be accommodated; 4% reported the building used was not accessible; 18% reported transferring a patient were not possible; 9% reported there were no accessible examination tables or an lift. The reality is less than 10% of physician offices are accessible. The vast majority of offices are accessible in name only. Yes, you can get in the door but that is where access begins and ends (bathrooms are hard to find as well). In the words of Lisa I. Iezzoni, MD, director of the Mongan Institute for Health Policy at Massachusetts General Hospital in Boston “Health care is really one of the last bastions of this kind of discrimination”. Iezzoni also stated “Its curious because we are talking about health care”.

The great difficulty people with a disability encounter in their efforts to access health care is not curious at all. It is blatant discrimination. We are deemed an economic drain by for profit health insurance companies. Doctors perceive us as time consuming patients with lengthy medical histories. Staff considers us extra labor. Culturally, we are stigmatized: symbolically we represent the limits of medical science. If you doubt me, I suggest you use a wheelchair and see the sort of sideways glances one gets from people in the waiting room. It is an exceedingly uncomfortable environment. In fact I would describe the typical medical office a hostile social environment. And here is where the New York Times article was fascinating. It was not the content of the article but the multitude of comments that followed that illustrated how poorly understood disability is. The comments graphically reveal a stunning level of ignorance. Ignorance here refers to the fact almost every comment failed to understand the issue is flagrant civil rights violations.     

Here a sampling of comments

Hospitals might consider providing an ADA accessible clinic treatment area and allowing physicians to rent it for use by patients who need this type of facility. Booking time could be done by co-opting OR time blocking software/tools.

Doctors as most people are turned off by disabled, obese and unattractive people.

I think most people, even those in the medical profession (sometimes especially those in the medical profession) are traumatized by their frightening but limited exposure to the lives of people with disabilities. 
I think that professionals may sometimes know a great deal about "disability"; enough to be afraid, but they don't personally know anyone who has a severe disability very well and are kind of freaked out by the whole thing.

Everyone deserves to have access to appropriate quality health care. But who is going to pay for the office remodels and additional equipment? I can't see either Medicare or private insurers doing this. I feel fortunate that our healthcare organization is willing to make the investment in special exam tables, lifts, slings, etc, as well as the training needed to use these items safely. But I can't see physicians who work outside of big multispeciality groups or healthcare systems being able to do this without help.

OK, let's add this to the list of 10,000 other unfunded mandates that physicians struggle to comply with.

If all medical providers were required to have weight-adjustable units or elevators for the disabled, their costs would rise and they would have to charge more. So everyone else would end up paying for the morbidly obese and the wheelchair-bound.

A routine physical or really any routine procedure becomes difficult and time-consuming in this population. Offices would have to schedule double time for them and other patients would have to wait. If you could get reimbursed for a double appointment that would help.
On the other hand, being disabled doesn't exempt people from trying the best they can to take care of themselves.

A routine physical or really any routine procedure becomes difficult and time-consuming in this population. Offices would have to schedule double time for them and other patients would have to wait. If you could get reimbursed for a double appointment that would help.

On the other hand, being disabled doesn't exempt people from trying the best they can to take care of themselves.

The problem is federal mandates (ADA) without funding the extra work and expense involved in caring for these patients.

You can't expect every doctor's office to invest in very expensive extra equipment. Instead there should be at least one practice in a given area that does so, and that equipment should probably be paid for by a government disability program. Actually, I can see a specific area of a hospital such as an annex to an ER set up this way so it could be used for both purposes.

Not one comment framed the issue, the lack of physical access to physician offices, in a civil rights framework. Many expressed deep reservations about the cost of making medical offices and hospitals accessible. This concern is always linked with animosity directed at the Federal Government and so called unfunded mandates. This is grossly misleading. The ADA is not an unfunded mandate but civil rights legislation. Access and “reasonable accommodations” are required by the ADA. The ADA I would add is over twenty years old and enforced by the Department of Justice. The ADA is not some pseudo architectural requirement mandated by the Federal Government. The other obvious theme is what I would classify as segregation while commenters would deem it “special”; namely create a separate area for patients with a disability. The two themes identified illustrate just how much animosity is directed at people with a disability. Because our existence is not valued the general public balks at any and all expenditures directed toward full inclusion and equality. There is a deeply ingrained belief that wheelchair access is a choice—out of the goodness of our heart we are willing to spend some money on such access. But if the amount, an amount never identified, is too much well then too bad.  This misguided belief I blame on secondary school systems. As a society, we are quick to segregate people with a disability. Segregation starts in secondary schools replete with short buses and resource rooms where children with a disability are separated from their peers. A harsh lesson is being taught--segregation is the norm and socially appropriate. People with a disability and all those that could fall into a category anthropologists identify as the other do not belong beside typical people. We humans fear others that are different. The other can take many different forms. People with a well-known disabilities such as paralysis, blindness, profound cognitive disability, or mental illness. One could include those unusually tall, short or fat (obese). I would also include those that purposely or involuntarily become different: heavily tattooed people or those disfigured by cancer or an accident. The list of possible others is rather is sweeping but the social response to such others remains the same. 

I wish I had the answer to how to create a fully inclusive society. I wish I knew how to insure that all people share the same civil rights. Brilliant and famous men and women before me have failed in their efforts. Hence I know such an effort is less a specific goal than an ideal to strive for. I just feel that we are failing to make even a modicum of an effort today. Lip service is paid to laws such as the ADA. Forty years of progressive legislation has absolutely no social mandate—the comments following the article in question emphatically demonstrate this. I don’t get it. Disability is never going to disappear. It is in my estimation a integral part of humanity and our evolution.   

11 comments:

Jo Kelly said...

I have to be falling down near deaths door before I go to a doctor or hospital - and I live in a country that has a very different health care system. It fails us every day.

Thom Brown said...

I don't think the average American has any clue to what is meant by 'civil rights,' certainly not in its broadest sense. It remains about voting for many, and if you don't know what something is, it's hard to miss it when it's absent. Education and advocacy are the only solutions I can think of, other than experience. Progress has been minimal though - maybe even modest - but there has been progress. Now that society seems to be developing an awareness of the civil rights of the gay community, maybe there is hope for their understanding of the rights of those of us with disabilities.

Middle Child said...

Excellent essay and some good points we know too well about. This reminded me of a complaint we put in before Don was killed - it was a disturbing incident which happened in 2005 - I hope its not too long here - but explains the stupidity of medical and radiology as to what disabled means - just realised - its too long will send it via email

Matthew Smith said...

As for the issue of women in wheelchairs and doctors, their attitude towards chronic illness is another major stumbling block even if they can get into the building and onto the table. There are quite a few who take an "all in the head" attitude and refuse medication and referrals. I know one lady with EDS and syringomyelia who has been refused pain relief for the past six months (she has no sensation below the waist, though some movement, but has a lot of neuropathic pain and itching). SCI and neuropathic pain are not exactly poorly observed phenomena.

Also, are you sure women are a minority of wheelchair users, rather than just of people with spinal cord injuries?

william Peace said...

Mike Volkman left me the following comment. He has given me permission to post it here:

School segregation does not wait until secondary school. When I enrolled in kindergarten in 1970, the procedure was to place me automatically in "special ed" (how demeaning a term that is!). What kept me out of that segregation was parents who were willing to fight. They were teachers themselves at a time when some rabble-rouser named Judy Heumann was making headlines for having the audacity to want to get a job. They sought her out for advice. One brief conversation in a hotel room with her was enough to forewarn and forearm them to expect and prepare for what was coming for the next 12 years. IDEA may have been around for 38 years, but words on paper don't change a long history. The law don't change another's mind when all it sees in the hiring line is the line on the color bar. That's just the way it is.

william Peace said...

Jo, I have no doubt the Canadian system is far from perfect. However, at least you do not fear bankruptcy every time you get ill.
Tom, I hold a dim view of what the average American knows. Sadly education is no longer valued. Scholarship is scoffed at. This is a big problem. Yes, progress has been made but it is glacial. And yes education and advocacy are important. At issue is how to make advocacy resonate with the general public.
Matthew, It is stunning to me how many doctors are all too willing to dismiss the complaints of women. And yes people with a disability are often given inadequate pain control. As for women and wheelchair use, yes they are out numbered by men. In the SCI population the ratio is of men over women is very high. About 80% men last time I checked. THough this may equal out in time with TitleIX and women now far more active in sports and recreational activities. MiddleChild, What Don experienced was criminal.

Shannon said...

I haven't had too many problems getting onto examining tables at the doctor's office, but that is because I am not overweight and do not need to be completely lifted. I read the comments under the article. As often happens, there was a lot of hate directed towards obese people, and of course, ignorance about disability.

When I'm an inpatient, though, it's usually a very undignified experience because the patient bathrooms are usually not accessible - and outside of major rehab facilities, the staff do not always understand the needs of spinal cord injured when it comes to elimination issues.... they don't understand why I can't use a bedpan. I usually end up having to use a Foley, and I have to explain why it needs to be flushed when it clogs up. About 1-1/2 years ago I went to a small rehab facility (after acute care hospitalization for a pressure ulcer) that does not often get spinal cord injured patients. My Foley needed flushing or removal. I first asked at 7 am and it was not done until 6 pm. An LPN did not understand why I took so long in the bathroom and needed a large supply of gloves (so your bowels don't work?, she said). They didn't understand why the 3-times-a week p.m. on their schedule showers didn't work well with an a.m. bowel routine. After 3 weeks I went home and the pressure sore improved a lot faster.

william Peace said...

Shannon, I avoided any discussion of the animosity directed at obesity in the comment section. The lack of knowledge regarding post SCI care when hospitalized is frustrating and dangerous. Corners are cut to reduce labor for staff (and perhaps cost control). The best example is one you mentioned--the insertion of a foley catheter. This is convenient for staff but it significantly raises the risk of a serious UTI. And yes patient bathroom are not accessible. In fact I am not sure I have never seen an accessible patient bathroom outside of a rehab hospital. Many years ago I was hospitalized and had to use the public bathroom. This was not a "reasonable accommodation" in my estimation.

Shannon said...

Years ago during a hospitalization at St. Vincent's in Manhattan I was allowed to go the rehab floor to use the bathroom. Usually they won't let you go to a different floor. Last time I was in my local hospital I was able to use the bathroom in my room, but only because I was in a newer wing and my wheelchair is slightly more narrow than standard. The showers, though, have a step. In the old wing, the sinks were operated by a foot pedal so if your feet don't work you can't even wash your hands by yourself. Sometimes the staff are so busy at the hospital that if you can't get out of bed yoursslf and use the bathroom, several days may pass without even a bed bath. During one hospitalization the only time I was able to get a really good wash was when nursing students were there for the day.

Shannon said...

Years ago during a hospitalization at St. Vincent's in Manhattan I was allowed to go the rehab floor to use the bathroom. Usually they won't let you go to a different floor. Last time I was in my local hospital I was able to use the bathroom in my room, but only because I was in a newer wing and my wheelchair is slightly more narrow than standard. The showers, though, have a step. In the old wing, the sinks were operated by a foot pedal so if your feet don't work you can't even wash your hands by yourself. Sometimes the staff are so busy at the hospital that if you can't get out of bed yoursslf and use the bathroom, several days may pass without even a bed bath. During one hospitalization the only time I was able to get a really good wash was when nursing students were there for the day.

new source said...
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