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.
Duh!
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?
Anyone?