Dear Governor Cuomo,
I am a native New York who lives with a brain injury. I also head up the Kahrmann Advocacy Coalition. KAC is grassroots advocacy coalition based in New York, that has, for some time now, tried to work in a cooperative manner with your New York State Department of Health to make sure New Yorkers with brain injuries receive the best possible care and, of course, have their equal rights both respected and protected.
This not what New Yorkers with brain injury disabilities are experiencing from your DOH. Getting your DOH to work with us (or anyone for that matter) and protect the rights of NYers with brain injuries doesn’t work. Your DOH doesn’t care.
In fact, the dysfunctional and denial-of-rights-respect-and-dignity climate your DOH perpetuates includes the following: anyone providing care to New Yorkers on the state’s Traumatic Brain Injury Waiver Program is not required to have any expertise at all in the brain and brain injury. Those in your DOH who oversee the waiver are also not required to know a thing about the brain and brain injury, and yet, they are the one’s deciding who will or won’t get services as well as who will or will not remain on the waiver.
You are also aware, unless of course the DOH is making it a point to keep this secret from you, that New Yorkers placed in out-of-state facilities receive zero protection or oversight from New York State. Your DOH’s rote response to this is, we have no jurisdiction in that state, a response which is, on the face of it, true, but there is, and the DOH knows this, nothing preventing New York State from filing a complaint with CMS (Centers for Medicaid and Medicare Services), the very entity that allows a state to have a waiver in the first place. And, NY does nothing to protect its own outside NY’s borders, even though millions of New York dollars are spent on their care.
Over the years the problem with those DOH staff involved in the lives of NYers with brain injuries has been pointed out, more than once but these people stay in place. People like Mark Kissinger, Maribeth Gnozzio, Lydia Kosinski, and Shelly Glock, to name a few, should be transferred or fired outright. Their mandate appears to be, Be as uncooperative with members of the public and as unsupportive of the rights of New Yorkers with brain injury disabilities as you can possibly be. I’ll give you an example which, in fairness to you, I know you are not aware of. Some months ago I filed a FOIL (Freedom of Information Law) request asking for the names of those in the DOH who were drafting the TBI Waiver Manual. Before filing the request I asked Mr. Kissinger directly via email and received no response. At any rate, a month or so later I received notice from the Records Access Office letting me know that the DOH (Mr. Kissinger) needed another 30 days to gather this information. After more than two months, I finally received the answer to who in the DOH was drafting the TBI Waiver Manual. You’ll never guess. Mr Kissinger and his staff. The delay in your DOH’s response was deliberate.
Governor, I not only liked your father, I admired him and believe him to be one of the finer governors New York has ever had. At the moment, I do not feel the same about you. I sincerely hope that changes. Overtures earmarked for you are to no avail, they get waylaid or referred elsewhere, which is why this letter to you is being sent publicly, in the open. This will not be the last letter, there will be more.
Now, you have the reputation, perhaps unfairly, of being something of a bully. I don’t know if this is true or not. But in the event there is any truth to the reputation, please know I am not worried about bullies. You see, Governor, I live with a brain injury. In 1984 I was held-up on the streets of Brooklyn and shot in the head at point blank range. The bullet remains lodged in the brain. I was able, somehow, to get back on my feet after getting shot. The two aforementioned realities make two things clear: I do not fear bullies and I do not doubt my willpower and tenacity.
Peter S. Kahrmann