REALLY?!? - an open letter to New York State

               So, today I got a phone call from Feisty Pants' pediatrician's office.  It seems they cannot get her insurance (which is NYSMA) to pay for her formula.  I fully admit, it is an expensive formula, but pb & j sandwiches do not fit into a 14 French gastrostomy tube. Feisty Pants has been tube fed her entire life.  First by an NG tube (that's the one that goes down your nose) then by a peg tube (the kind that goes directly into your stomach via an incision in your abdomen- like a second belly button).  She cannot swallow properly due to her CP.  The insurance has paid for her formula up to now. But now suddenly, New York does not see fit to  -and I am quoting here- "pay for more than 570 calories of formula a day".  Feisty Pants is twelve years old.  Her doctor wants her to have and she definitely needs 1950 calories per day.   WHAT YOU ARE PROPOSING NEW YORK IS A DEATH SENTENCE VIA STARVATION FOR MY TWELVE YEAR OLD LITTLE GIRL.  

               I certainly hope this a mistake on your part. I certainly hope that you simply have confused formula for enteral nutrition with BABY formula.  That you merely have not instructed your computer system to recognize the difference, and that come next week, a human being with sentience and discernment will be able to manually override the system and smooth this all out.   Otherwise, very soon I will have to make some hard choices.  Like, admit my daughter to a hospital where instead of  her insurance having to pay for an admittedly expensive formula, you will have to pay for a MUCH  MORE EXPENSIVE hospital stay AND the aforementioned expensive formula.  Or drag my oh so adorable, beautiful, vulnerable looking child in her wheelchair onto the local news where no matter how cute you think you are, you will only come across as the Scrooge who wants kill a disabled child through starvation. (And by the way, isn't that murder in the second degree in our fine state? I believe the wording is "depraved indifference to human life".) Never doubt that I can and will use her cuteness as a weapon, especially in such a worthy cause.

             Make no mistake, I am not being overly dramatic.  This is her basic nutrition. It is literally life or death here.  And you are doing this to everyone I know right now. You are being penny wise and pound foolish by trying to micromanage expenses that will end up costing you more in the long run.  A healthy disabled child is MUCH less expensive than a sick disabled child. I know you think you are being fiscally responsible with this sudden micromanaging over every expense spent on the disabled in New York State.  But you are not.   You affecting  the very lives of the most vulnerable members of your state. They are not getting the services we all pay for. And then that will assuredly cost all of us more in added hospital stays and added prescriptions and added therapies needed to repair the damage you are causing by your actions. Actions to the very people you are supposed to be serving.  For that's what government is- it is the management of services for all of us.  Otherwise- what purpose is your very existence serving at all?