Sunday, June 30, 2013

30 June 2013

The unintended effect of depending on codified behavior: or,  Oops we never saw that one coming

I have mentioned all the “rools” around here, and the slavish approach to compliance. Many are explained to be for our safety. Yeah, Right. The way it seems to me they are really about corporation counsel being extra cautious and fearful of some litigation finding its way aimed in the facility's direction.

Take for example the doors are locked from the inside. Don't get me wrong, there are several ways to unlock them. The worker behind the welcome desk (inside, of course) can press a button to let visitors out after they have seen a resident, there is a keypad that one presses the code number into in order to release the door. If I sit and watch long enough I probably could figure out the code (it is NOT given to the residents). This part makes me feel just like some wayward child who is deemed not worthy of trust.

There were two residents the other day who timed their exit just right, so as to follow some visitors exiting the building, to make their escape after the visitors had seen another resident here. But as one of them was in a wheelchair and the other uses a wheeled walker, they weren't going too far. Like most of us, they just want to feel the breeze blow over exposed skin and the wind play with their hair, these two just wanted to sit ouside in the front of the entry door, unimpeded for a few moments. They were quickly shuffled back inside. No fresh air for you.

Nonetheless, the chance to have a staff member take a few residents out for some supervised outdoor time was severely cut back after that.

In my case where would I go? I had to sell my house to comply with Medicaid rules. I have no house, no car, no savings. In fact I am not allowed to own anything worth more than two thousand dollars. Where would I go? The State has made sure that I am made institutionally poverty stricken – on purpose. I did everything right, I originally bought a house years ago, paid off a thirty year mortgage in eight years. Kept going to school to get an advanced education, saved for my retirement, paid taxes, worried about my reprsentatives hearing my views in the State legislature and in Congress.

So what! I qualify for the new national health care program by way of being disabled. MS is considered to be a qualifying disabling disease, due to that I am swept into the federal program. The states are expecred to participate their fair share (ten percent to begin in a few year's time)by using their own medical program (37 states are going to use their Medicaid program already in place. The Medicaid portion is so punitive in its approach that I don't believe that Congress read the bill all the way through and considered its consequences before voting on it. Did Congress really intend to be so throughly disruptive and destructive of citizens after getting sick? No one knows what makes MS affect people, its not like contracting cancer after a lifetime of smoking. I did nothing to get this disease, I don't deserve to be treated this way. But, the rules are for everyone, nobody escapes this basic mistreatment, which is called healthcare. The nonfinancial cost is very noxious.

As I finished my dissertation I became more and more dependant, first on a cane, then on a wheeled walker which I used when I was out of the car. I had the car converted for use with hand controls, which necessitated several lessons from a State approved instructor, training me to be able to demonstrate sufficient ability to apply for a limited driver's license that would permit me to drive my car equiped with said hand controls. At the special Secretary of State office that was designed to retest individuals so in need of driving with mofified controls I ran into the first of many individuals so hidebound by the need for rules, this fellow made his issues everyone else's problem by default.

I had called this office about the scheduling (they make your appointment at their conveniance, not yours). I had been told not to worry about one of the needed pieces of paperwork, it could always be brought in later. The problem was that when I explained this to the driving inspector, his face froze (it was rather stiff in the first place), he turned bright red and acted as if he had been greatly insulted. Everything stopped, my driving exam was rescheduled for some unknown future time, which was again dictated to me at the Sec. Of State's own choosing of time (it turned out to be three months later). I couldn't drive for the whole summer, I had to depend on other people to get groceries for me, it was an introduction to becoming a resident in a facility like this, and how everyone has rules and regulations about you the one with the disabling condition. It almost seems that people believe that if enough rules are established they will be safe. Rules are merely guidelines, like sugesstions they only point one possible route to take. Over dependance on rules often serves to limit, hamper and diminish one's humanity. How is it that such things are allowed to get this far?

Its not my fault, I don't need to be treated in a way that seems so punitive. I just have a disabling condition, I don't need to be held accountable like this.

Here's an example of the looneyness that passes for normal around here. One of the symptoms of my MS is that I basically have no control of my voluntary muscles below my sternum. When I lie down in bed it is in the supine position. I have no control of my adductor muscles. When laying on my back my feet do not point with my toes straight up, rather my feet splay to the outside, each foot poking to the outside as if I were very pronated in my gait. This is very hard on my knees, as they are meant to swing like a door hinge, not rotationally, like a hip or ankle. In order to keep my feet sticking straight up, there needs to be some support aeound my feet. At first we used lots of towels rolled up and stuffed around the feet. This does not always work. Not all of the CENA's understand the need for this packing, some do a poor job of it, some have to be gently guided to pack the towels just right. There is a tendancy to do it fast so as to get on to the next resident. After one of these slipshod foot packings my feet splay out, after seeral hours of this my knees really ache.

In the last facility I was in, they had bunch of these boots specially designed to keep the foot upright when lying down, In fact some of them were so old and heavily used that the velcro straps that affixed the boot to the foot were nearly worn out.
Two views of the boot support

The heel goes into the corner, the long gray foam
block is attached so it can be used on either side.
One design can be used for either foot.

This facility has the same boots, except that each boot is individually wrapped in factory packaging. All of the boots here are brand new.When people leave here and no longer want their boots they leave those boots behind. The Facility throws them out, routinely. I have asked for some boots, but I am no longer able to participate in physical therapy, it is the physical therapy department that determines if one “qualifies” for such a device as this boot. I no longer am able to participate in PT as after a month I was not making enough progress (as measured), so I was deemed no longer eligable to receive any more PT.


Folks, no one ever gets better with MS, its not like having a stroke, there is no improvement no matter how much PT one does. Get a clue.

So I managed to talk one boot out of them, but not two. I have spotted some being dragged away in a garbage sack (large clear plastic bags). I asked the housekeeper if I could have one of those boots. I was told, “No”. They have to be thrown out, she might get in trouble if she gave one to me, it's not sanitary, she said. Right, and the sheets, towels and other laundry I use in here daily is not always brand new, but cleans to a sanitary condition by the laundry daily. I have even seen bed sheets packed off to the laundry that are pretty soiled, they are not thrown out.

Am I to believe that my knees are to be allowed to slowly break down and the cartilage give out, because the concern is that the laundry is only conditionally effective at cleaning and sanitizing the items entrusted to their service. This sequence based on a set of faulty rules makes no sense to me. Is there some magic Pixie dust that everyone is subject to whenever they enter the doors of the facility, that makes everyone dummy down upon entering the building? Does anyone see the foolishness going on here? Does anyone care? Why am I the only one who can see the silliness to this scenario? Is anyone watching?


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