Tuesday, July 23, 2013

Disability and Driving Privileges, Killed with Beauracracy

One thirty am and no sleep in sight.

Overhead the ceiling fan slowly whirls and I get up to pull the speed chain.  Spinning blades whistle a little louder and the rocking back and forth of the fan's base against the sheet rock is an annoyance I came blame sleeplessness on.

The State of Florida is killing me softly, with their unending, unrelenting songs of desire.  They want more and more and more.  And with the leisurely bright blue digital numbers staring unconcerned from behind the alarm clock's plastic faceplate, Florida's government is accomplishing what my torn aorta could not.

I never expected being disabled to be easy, but maybe I hoped life would become manageable.

Being a person with disabilities has a full slate of new and additional challenges and challengers, not the least for me being the State of Florida.  You'd think the state would want to help make getting through the daily challenges more basic, effortless.  But that is not the way it works, at least in my present experience with the driver license bureaucrats.

I've been a good driver over the past many years.  I am even a better driver today because of my surgeries.  Today the second letter arrived from the Department of Motor Vehicles (DMV).  Today's DMV letter is the reason I am staring at the ceiling fan instead of dreaming.

The first letter arrived about two months ago (visible via Google Drive here), signed by a Hearing Officer with the Bureau of Administrative Reviews requesting my presence in their Daytona Beach office to discuss 'your ability to safely operate a motor vehicle'.  I suspect the title, 'Hearing Officer', is an attempt to satisfy due process requirements.

Life for all the disabled is hard enough already. 

For me there are quite a few medications to buy, organize, record, take and then coordinate refills with the many different prescribing physicians.  There are frequent PT-INR and other blood tests, iterated blood pressure and pulse readings, prescribed exercise and therapy now and also the task of trying to self diagnose the strange and somewhat disconcerting new pains that occur daily.  Going to the doctor or ER for each unexplained serious symptom is simply too difficult logistically.   Coordinating with insurance and the various doctor's office billing companies is a full time job in itself.

Though taken individually some of this may sound easy, cumulatively the load can be overwhelming, especially for someone who has a hard time somedays walking out to the mailbox.

My primary care physician says 'your job is to stay alive'.

And so we've simplified, trying to keep stress levels to a minimum.  Yes, the beta-blockers like Metoprolol help, but only to an extent.

And I really stressed out thinking the State of Florida would take my driver's license after the first letter arrived.  The day of the scheduled appointment arrived and I sat down with the Hearing Officer who asked me (and recorded) a list of questions about my condition and my medications.  I provided her with the completed medication chart as requested by the State of Florida.  She also spoke with the other driver who accompanied me about their perception of my ability to drive safely.

Ironically, there are some people out there right now who can not clearly see three feet in front of them with driver's licenses.  They are the ones the State of Florida should be after.

The Hearing Officer had me sign a medical release form and collected contact information for my cardiologist.  She informed me the DMV would contact my doctor and once the medical review committee met to consider the information a decision about my license could be rendered.

My cardiologist called me to confirm receipt of the form and tell he would submit the required information to the state.

I made the mistake of thinking the whole exercise was done, complete and history.  Wrong.

Today another letter arrived in the mailbox from the State of Florida (check it out here). This letter contained a much more detailed medical inquiry form.

My cardiologist had told me point blank he supported my driving and made clear his opinions in the form the State of Florida previously required.

The new form was to be completed by a 'personal physician', one I am assuming to be my primary care doctor.  The letter was also accompanied by an informational brochure explaining why someone might be 'red-flagged' as an unsafe driver because of medical conditions.

But as the ceiling fan whirled overhead between one and two am this morning, the new form questions reverberated back and forth through my head.  The State of Florida is killing me softly as I lay here with adrenalin hitting my heart despite Metoprolol.

Why does Florida want my personal physician to state my education level?  Why does Florida want my personal doctor to tell them if I am have been declared disabled?  In my opinion the form is extremely confusing and serves only to duplicate the essential information already submitted on my behalf.

Life for the disabled is hard enough already.

This new form going to be time consuming to complete - I'll have to try to schedule a checkup appointment, explain the circumstances behind the forms, make sure my primary physician office coordinates all records with my neurologist, ophthalmologist, cardiologist, nephrologist and others, complete the forms and submit back to the state within the 45 day limit.

Most other aspects of my life will go on hold now for a couple months, after which the real waiting starts.  I am sure phase one will lead to phase two, for as here it always does.

And time is not the only issue with being caught in the bureaucratic system of forms and computerized phone answering systems.  I can ill afford to spend the significant amount of money these unplanned doctor's visits will end up costing.

Anyone can report another for suspected unsafe driving circumstances here in Florida.

However, I am not sure how I ended up being red-flagged.  My license says 'Safe Driver' and although my short term memory sometimes lacks, the reason I can't remember my last ticket is that my last ticket was well over fifteen years ago.  Since speculation leads to stress, I am not going to worry how I ended up being red-flagged in the system as a potentially unsafe driver who needs to be medically examined over and over to keep his license.

As I've said here before, my heart functions about twenty to twenty five percent of capacity and I deal daily with the implications of a connective tissue disorder and an aorta that is still torn from the top of my heart, down through my abdomen into my leg.  

Life for the disabled is hard enough already.   I think anyone who has struggled with long-term, chronic disabilities may agree.  Life is hard enough without government making life more complicated for the disabled.

In the meantime, the State of Florida is still killing me softly, regardless of how hypnotically the ceiling fan overhead whirls.


brandy bushway said...

Tough spot to be in.. but you definitely shouldn't have this added stress to your life.. they have no idea how to handle us aging Marfs so they are grasping at straws. The folks who have hardened arteries and high blood pressure shouldn't drive either then... or those who have epilepsy. . Just my 2 cents... <3

Clara said...

So sorry, and no it is not right. A lot of smart people were NOT asked their opinion when establishing and maintaining the process and forms. Some of them work for the State of Florida, I guarantee. And, yes, they feel helpless and defeated.