Open letter to New York Governor Andrew Cuomo

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. 

Sincerely,

Peter S. Kahrmann

Advertisements

The heinous among us

If you know someone with a disability then you know there are people in the public and private sector who willfully make and support decisions denying equal rights to people with disabilities (PWD).  Decisions and policies that put peoples homes  and lives  at risk, deny, reduce or take away services that allow PWD to attain their maximum level of independence, send them out of state for sub-par care; in short, treat them as something less than human.

I do not understand how one human being can treat another human being like they are little more then feces and sleep at night. People who treat people like this are the misguided heinous among us and should be exposed and held accountable at every turn.

Some in the private sector see us (I live with a disability) merely as a way of making money. We are revenue streams, nothing less, and certainly nothing more. Not long ago there was a phone conference in my home state of New York among various parties involved in the state’s Traumatic Brain Injury Medicaid Waiver. The idea of allowing family members to act as home staff and get paid for doing so came up, the argument being that the presence of family, of loved ones in someone’s care, can help in the rehab process.

Some in this phone conference, including providers, thought this was a good idea. However, another provider complained that allowing family members this role would mean he would “lose hours.”  While I will not name this person, I know him. He told me once he had considered becoming a monk and, as far as I know, attends church on a regular basis.

Now, I’ve been an equal rights advocate for some time. I’ve never run across a government agency more ruthless and inhumane in its treatment of, in this case, people with brain injury disabilities, than Andrew Cuomo’s New York State Department of Health.  If actions speak louder than words, they do not care a wit about the lives of New Yorkers with brain injuries.

First of all, those in the DOH who oversee the TBI Waiver program and write the TBI Waiver Manual have absolutely no formal training or formal education in the brain. Not one iota. When I recently asked Deputy DOH Commissioner Mark Kissinger for the names of those in the DOH drafting the TBI Waiver manual, he would not tell me. Finally, a FOIL request pried the names from the DOH’s secretive claws. Who are those drafting the manual? Kissinger, Maribeth “Knuckles” Gnozzio, Lydia Kosinski, a DOH attorney and a member of the office staff. Not one of them has any formal training or education in the brain.

Along with the DOH, New York has the Traumatic Brain Injury Services Coordinating Council. Advocates for people with brain injury disabilities are waiting to see if, under its new leadership, the TBISCC will, finally, hold the DOH accountable, present real proposal to the DOH, and publicize all the council is doing online for all to see. It has been repeatedly suggested to the TBISCC that it create its own facebook page and or start its own webpage. This has not happened, yet, but if they are as sincere as we are hoping, these webpages will appear.

The TBISCC was formed by an act of the New York State Legislature in 1994 to ” to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” One need look no further than the council’s minutes to confirm the DOH’s lack of interest in doing anything to respect and grow the lives of NYers with brain injuries. Consider this. Not once, in 20 years, has the DOH asked the council for input on how best to serve New Yorkers with live with brain injuries.

Some time ago a friend of mine was cautioned about me by a now retired individual who was in the field of brain injury: “Be careful he doesn’t turn on you,” she warned.  This individual knew at the time that I don’t “turn on” people. She also knew at the time that I will expose people or groups, private or public, who are denying people their rights, treating people as if they are less than human. Such was the case with this person. She was once part of a committee drafting a proposal on behalf of people with brain injuries when other committee members pointed out there needed to be people with brain injuries on the committee. She said this was not true. There was no need for people with brain injuries, after all, she explained, she spoke for them.

Rubbish.

The heinous among us. The greatest justice we can do ourselves and them, is to bring their behavior into the light, expose them. Whatever discomfort this might cause them is nothing compared to the torment and suffering their putting PWD through, and making a living doing it.

Backstabbing Cuomo & New Yorkers with disabilities

Examination of proposed changes to the by-laws for a New York State brain injury council reveals a state agency’s attempt to weaken a council, already in disarray, put the council under the state’s control, and weaken the current requirement that people with brain injuries and their families be fairly represented on the council.

The council was signed into being by former New York State Governor Mario Cuomo and the proposed changes are being proposed by current governor Andrew Cuomo’s department of health. It is reasonable to believe, given the current governor’s admirable efforts on behalf of people with disabilities to date,  that the DOH is engaging in practices that violate all Governor Cuomo stands for and all his father stood for.

Now, let’s take a look at these proposed changes.  In one glaring instance of undermining the council, the state DOH proposes removing the following clause from the bylaws in its entirety: “Assuring the appropriate consumer representation of persons with brain injuries and their families is represented in the activities of the Council.”  Were this to be removed the bylaws would in no instance include a requirement that there be ample and fair representation of people with brain injuries and their families on the council. One has to question the council’s willingness to oppose this, especially since the person still claiming to be the vice-chair, even though her term on the council ended more than nine years ago, Judith Avner, the Brain Injury Association of NY State’s executive director, is the very person who blocked persons with brain injury from being on a now defunct committee that was seeking to represent persons with brain injury.

Proposed changes on pages 3 and 4 of the bylaws would, if adopted, allow a  member of a state agency to be the vice-chair of the council (something the current bylaws appropriately blocks because the council is designed to be an independent entity) and the bylaws put the vice-chair in charge of the executive committee. This would allow the state to essentially take over the council, something that must be fought and resisted at all costs.  These proposed changes weaken the requirement for council members attendance (thus weakening the council) by allowing council members to miss two meetings over a period of two years without risking their place on the council rather than two meetings in one year as the current bylaws requires. The council is required to meet a minimum of three times a year,  in case you think the current meeting requirement for council members is too strict.

And then, the DOH proposes a weakening of council documentation. Current bylaws require that a written record of the meeting be mailed out to council members “within 30 days of a meeting.” DOH wants that requirement replaced with “as soon as practicable.”

As a July 5, 2011 post in this blog accurately observed, this council, called the Traumatic Brain Injury Services Coordinating Council, has never done its job as designed by the state legislature: “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.”” As this blog previously reported , “more than 10 years of TBISCC meeting minutes tell us the council” has “failed to come up with any real comprehensive proposals for the DOH”at all. Not a one.

History tells us this is just fine with the DOH. Over the years the DOH has proven resistant to any kind of real inclusiveness and input. On page 6 of the proposed changes, the DOH wants the word expert removed in a sentence that currently permits the council  (italics mine) “to provide technical and expert assistance to the Council…” Given the DOH’s resistance to input, one can only conclude the ridding themselves of having to deal with real experts makes it even easier for them to reject input.

The DOH has a history of being unfriendly to New Yorkers when it comes to brain injury. Before the TBISCC’s meeting last December, the DOH’s Cheryl Veith (who later said she was directed to do so by her superiors yet refused to identify said superiors) sent out an email that included this:

Executive Law 166
The Department of Health is required, pursuant to Executive Law § 166, to keep a record of those who appear before it.   All attending the meeting need to complete the attached form.  Below is the form that will need to be completed upon your arrival at the TBISCC meeting so it will save time if you complete it before you arrive. Please print the completed form and bring to the meeting.

Several problems with this: The form would require anyone attending to share the personal address and phone number. Second, the law doesn’t apply for two reasons. First, those in attendance are not appearing before the DOH, they are attending a meeting of the TBISCC which is an independent body. Second, the form is meant for lobbyists, not for members of the public who should not and are not required to hand over the personal information at public meetings.  And then, there is this: the TBISCC was perfectly aware of what the DOH was up to, and they said nothing.

This writer contacted Robert Freeman, head of the NY State Committee on Open Government, who confirmed that Executive Law 166 did not apply. Freeman called Deputy DOH Commissioner Mark Kissinger who agreed the law did not apply. Nevertheless, when this writer and others showed up for the meeting, there Veith was, trying to insist members of the public fill out the form.

The DOH and council’s penchant for stiff arming the public  is also revealed by the fact there is a TBISCC meeting this Wednesday, January 23, and still the council and DOH have not released the agenda. The meeting will run from 10:30am to 3:30pm in Meeting Room A of the New York State Museum in Albany.

There are a few bylaw revisions proposed by the DOH that do make sense. Limited the chair’s term to one year rather than two, and having elections by written ballot rather than voice vote. I would also suggest a term-limit clause permitting any chair and or vice-chair to serve no more than two consecutive terms, thus freeing the council from being under the grip of the rather dictatorial likes of former chair Charles Wolf and Michael Kaplen. The latter still claims he is the council’s chair even though his term as chair expired years ago.

Lastly, for now, there is this. Several council members are directly linked to BIANYS and BIANYS gets a sizeable annual grant from the DOH. Is it any wonder that the council has a documented history of not providing the DOH with anything mandated under the above reference Public Health Law? Is it any wonder that the council avoids holding the DOH accountable for some of its destructive behavior towards those with brain injuries who find themselves in the state’s TBI Waiver?

The problems at set forth here go all the way to the top of the DOH. This writer has sent several emails directly to DOH Commissioner Dr. Nirav Shah (and called his office several times) outlining the council’s problems. He has never responded. Never mind that the Kahrmann Advocacy Coalition has more members with brain injuries than the BIANYS has had in its entire history.