Accessibility and Marketplace Inadequacies

In May of 2014, my wife had reconstructive surgery on her right foot. The objective was to give her an arch and reduce her pain. Up to this point in life, she had a painful inverse arch that had worsened over time. Following surgery the plan was that she would be in a non-weight-bearing cast for six weeks, a walking cast for four weeks, and then a boot for another six weeks.

This requires change and adaptation. Especially in a two-story house. With the master bedroom upstairs and a houseful of people.

Prior to surgery, I built a temporary ramp on the side of the front porch. Why? Because non-weight-bearing means exactly that – she was not allowed to put any weight at all on that foot for six weeks. The most she was allowed to do was was use it for momentary balance. How did she get about? A knee walker, or kneelie as we call it, a rolling cart for her to rest her leg on.

a picture of my wife's rolling knee walker.

My wife’s knee walker.

At first, this went fairly well. The ramp I built was steeper than ADA specifications, but we believed it would be fine for six weeks of the kneelie, and then another six to eight weeks of a walking cast and a boot.

Did I mention her other problems?

Her knees were almost, and now just about completely, without cartilage. Bad arthritis. Her left knee must support all efforts to sit or stand. Her right knee supports part of her weight on the kneelie. she has bad bunions, and a host of other problems. Most of which originate from a connective tissue disease, which we understand, based on DNA analysis, she is Case 0 and our son is Case 1. Yep, a new genetic disorder similar to Marfan Syndrome.

So, like I said, things started off well enough.

On June 24th, during my last presentation at the VLDS conference, she fell off the wheelchair ramp at the office of her neurologist. She wound up in the ER with a concussion. Save that the concussion wasn’t really diagnosed until weeks later after a second (or it might have been third) fall. The cause of the fall was a poorly maintained ramp with a crack in it. A crack which caught the wheel of the kneelie, twisted the steering, and cost her balance.

Wheelchair ramps, unsurprisingly, are constructed (and maintained) with foot traffic and wheelchairs in mind. Not so much for these new mobility devices. More on this later.

The concussion lead to balance problems and then more falls. At one point I decided our former daughter-in-law (who was living with us at the time with the two grandelves) would no longer drive and escort my wife to appointments. The falls never occurred in my presence. There were some near falls, but I

picture of our wheelchair ramp

Our new wheelchair ramp

was paying attention and caught her. Fortunately, I am big enough and strong enough to do so. This is why I have spent so much time taking her to appointments since July. In part, at least.

In part because about three weeks after she got her walking cast she started experiencing a lot of foot pain. It got worse when they put her in the boot. It was then we all noticed that things did not look right. Her arch had fallen back out. X-rays showed the surgery had failed. Other parts of the surgery had healed properly, but not the arch. The bones had not fused. We scheduled a second surgery in September to make a second attempt. In this case, the plan was that she would be non-weight-bearing for 12 weeks and we would use three hours daily of magnetic therapy (to encourage healing).

The downside to this is that she has gotten steadily weaker since May. She was not fit to begin with (and I should note May’s surgery was following arthroscopic surgery on her left knee in February, and she had not regained strength from that) and the lack of walking and other activities had a really negative effect on her. By mid-September the pain in her left knee was becoming unbearable. Her knee specialist suggested that she might have to resort to a wheelchair full-time for she was out of a cast again.

It was then we started thinking about access to the house again.

My wife is a big girl. That temporary ramp was going to give me a workout pushing her in a wheelchair. More importantly, and we learned this the hard way, the design of the porch is such that  is almost impossible, almost but not quite, to get her wheelchair in front of the door from the side. Further, there is very little margin of error to avoid rolling her down the front steps. So, we had a wheelchair ramp constructed the first week I was away for the executive institute. I designed its layout to minimize the incline and impact on curb appeal. It would have been possible to build it in such a way that there was no incline whatsoever, but that would have looked odd.

The new ramp makes a huge difference in accessibility to the house. So far we have used the wheelchair only one day. That was the day after we were rear-ended and she had gotten pretty stiff and sore. (By the way, we have moved the bedroom downstairs into what used to be the office. This may be the case for a couple of years as she faces having both knees and a hip replaced. And bunion surgery.)

Escorting her to all these appointments, some 15 or 20 hours each week, has taught me a lot about what accessibility really means. And it is not just clinics and hospitals, but also restaurants and hotels.

Like I said earlier, most accessibility adaptations are focused on wheelchairs. Wheelchairs have great big drive wheels and much smaller wheels for maneuvering and balance. They tend to much less effected by relatively small deformations and surface imperfections. This is especially true for powered wheelchairs.

However, with a greater range of technologies for mobility and surgical options that didn’t really exist before, combined with an aging population that wants to be out in the world, accessibility takes on new meaning. The 3/4 inch-wide, 8 inch diameter wheels found on these devices are more subject to getting caught or redirected than what is required in the minimal ADA-compliance standards.

Some of the things I have noticed:

  • Maintenance of ramps and transition points are critical. Much of this is not being done.
  • The pebbled/bubbled surfaces on outdoor ramp transition pads are not helpful for mobility devices.
  • Many doors, surprisingly in clinics and doctor offices are not really accessible. They are too heavy.
  • Examining rooms too often do not have chairs with arms. These are a necessity for people like my wife as she has to push up with her arms to get onto her one good foot, orthopedic centers tend to understand this, but even they don’t always carry the ideas through into the exam rooms.
  • Office staff apparently don’t always know what to do if a patient falls.
  • Deep pile carpeting can be make things much more difficult.
  • Hotels should be careful about advertising accessible rooms with a roll-in showers when they, in fact, have tubs.

Some offices are well-run business operations. Others are just lousy. This is true for both public/nonprofit clinics and for-profit clinics.  There seem to some themes about the problem areas, but I don’t really have enough observations to confident with being more specific. It is clear though that some places we simply have to plan on an 8am or 9am appointment going until almost noon.  Other offices are very well-run, never appear to be over-booked, and we know how long we expect each appointment to be. Certainly there is great diversity in patients and their issues, and if I understand that, I expect healthcare providers to be able to understand that and schedule accordingly. Don’t assume every patient is a five-minute visit if you can calculate an actual average of 18 minutes. I understand the need to maximize revenue and reduce costs, but I have heard enough patients at one facility complain about a 2.5 hour visit and process to get five minutes with the doctor to believe there is something untoward going on.

And here’s a pro-tip for a now former provider: It doesn’t make any sense whatsoever to deny that you called your patient and left a message when we have the recording and caller ID and a digital record. Either you are insane or stealing narcotics.

The most difficult part of getting my wife the care she needs is that we are dealing with a dozen specialists. All of whom suggest someone should be reviewing her meds and coordinating care. Unfortunately, they don’t who that person should be. It is beyond the skillset of her primary and they have no other recommendations and don’t volunteer. She is in process of being referred to Mayo Clinic for review and study of her connective tissue disorder. We hope they are able to offer a solution.

She makes my big-ass brain tumor look like a walk in the park. Almost.

We are six weeks through this recovery. With luck. She will be walking in a boot at Christmas.




One thought on “Accessibility and Marketplace Inadequacies

  1. Pingback: A Festivus miracle, and associated grievances to be aired | random data from a tumored head

Be nice. It won't hurt either of us.

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