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

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.

Time to say goodbye to BIANYS’ Avner

Until and unless the board of the Brain Injury Association of NY State takes action, BIANYS will remain an insular presence controlled by a dictatorial executive director who should resign or be fired.

It seems clear that executive director Judith Avner has no real interest in truly interacting with or listening to BIANYS members, including those of us who live with brain injuries. She  shuts down  any and all attempts to improve transparency, maintains a dictatorial grip on the BIANYS board, website, Facebook page,  and newsletter, and has the board president marching to her orders. However, Ms. Avner is all too happy to ask anyone and everyone to donate money, appear at fundraisers, and have her picture taken with any and all celebrities who support BIANYS, mistakenly thinking BIANYS does what Ms. Avner says it does. I suspect it is safe to assume Ms. Avner is diligent about accepting her roughly $2,000 a week paycheck.

Save for its remaining valiant support group facilitators (volunteers all) and a small group of underpaid staff, most of whom are equally valiant in their work with those who sustained brain injuries in their youth, not as adults,  BIANYS has become little more than window dressing thanks to Ms. Avner, a seemingly anemic board, and a cluster of sycophants.

It’s hard enough managing life with a brain injury. It’s even harder when those who claim to care about you and say they advocate for you do anything but care and advocate, unless, of course, you count lip service. 

Over the past few weeks several BIANYS members and former BIANYS board members have been involved in series of email exchanges with BIANYS seeking answers to several questions and offering to help, not hurt, BIANYS, if, in fact, the answers are not all one would hope they’d be. While Ms. Avner will say all the things one would hope to hear at fundraisers and  BIANYS conferences, she refuses to even respond to any of the emails, some of which asked BIANYS to create an online forum for open discussion, whether that be a message board or the discussion component of their FB page.

Instead, the task of responding was given to Marie Cavallo, the BIANYS board president, a volunteer. As one person who read the email exchanges observed: “It looks like Marie’s lost her mojo.” Ms. Cavallo said BIANYS rejected the notion of a message board because it would be too time consuming. She said BIANYS rejected opening the FB page to discussion because, she claimed, healthcare providers had used the page to tout their wares. When it was pointed out that FB allows one to block companies and individuals, the next excuse she offered for nixing the FB idea was it’s too time consuming. Then, in what gave us all a flutter of hope, she said she would talk with BIANYS staff about opening the FB page (One wonders why it’s the board president and not the executive director talking with staff when the executive director is their supervisor. Perhaps Ms. Avner doesn’t have time for staff either.). Since then Ms. Cavallo has chosen to walk in lockstep with Ms. Avner and has ignored our emails and, needless to say, their FB page is still closed to discussion.

You may be wondering what were the questions we asked. Here’s a taste: Can you tell us how BIANYS informs its membership what it is advocating for? How does BIANYS decide what it will advocate for and how does BIANYS include its members in the discussion? (At one point Ms. Cavallo pointed out that BIANYS issues an annual report and publishes newsletters on its website. All true. But you’ve got a better chance of finding a needle in the Sahara desert than you do of finding word-one about BIANYS’ advocacy in the annuals reports or newsletters). We also asked how many person with a brain injury does BIANYS currently employ and how many has BIANYS employed since Ms. Avner took the helm on or about 1987. No answer.

Lest you think any of us are out to do anything other than hold BIANYS accountable let me say that in our emails we offered to help and support BIANYS in identifying individuals with brain injuries for employment and issues of advocacy. No response.

Lastly (for now), there are times the choices we make in life reveal our true colors. Several years ago when I was on the BIANYS board a fellow board member died. This board member, like me lived with a brain injury and had been in poor health for some time. However, poor health or not,  this person’s heartfelt commitment to BIANYS and devotion to those of us who live with brain injuries and our loves ones was unflinching. Had anyone on that board suffered a calamity in his or her life this person, poor health or not, would be there for them come hell or high water. Yet, when this good and decent human being left this world, Ms. Avner and Ms. Cavallo were no shows at the memorial service.

And then there’s this. At the first board meeting following this person’s death, Ms. Cavallo announced that Ms. Avner (who was sitting next to her) had been in frequent contact with the board member’s family and the family was doing well. Not long after this, I had the chance to have coffee with two members of the family (the board member’s spouse and child). I said I was glad Ms. Avner had been staying in touch with them. Both looked stunned. Ms. Avner had never called them, not even once.

Like I said at the outset, until and unless the board of the Brain Injury Association of NY State takes action, BIANYS will remain an insular presence controlled by a dictatorial executive director who should resign or be fired.

Is the Kaplen-Avner Show the problem?

It is revealing but not surprising that the New York’s Brain Injury Association – not the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) or Department of Health – is announcing what the next TBISCC meeting will be about.  It is no secret that the leadership of all three groups are, figuratively speaking, in bed together. It is also no coincidence that Michael Kaplen and Judith Avner lead the council and both, until recently, led BIANYS. Avner is still the BIANYS executive director.

According to the BIANYS website, “The September meeting will be dedicated to a discussion of the Concussion Management and Awareness Act (S. 3953-B) which passed the legislature at the end of the session. Discussion will focus on recommendations on the implementation of that legislation to the Commissioner of the Department of Health.” The passage of the act is, without question, a positive step forward. For the council to provide recommendations is all well and good and certainly appropriate. How is it, though, that BIANYS knows, before it is a announced

It is also no secret that little if any evidence exists of BIANYS or TBISCC leadership ever taking the DOH to task for some of its rather brutal treatment of brain injury survivors and, not incidentally, its rather brutal treatment those who provide services to brain injury survivors. New York’s Brain Injury Providers Alliance, for example, has, for some time now, been rightfully pleading with the DOH for a statewide uniform billing policy and they are still waiting.

What is not appropriate and what is an act of disloyalty pure and simple to New York’s brain-injured individuals is the fact TBISCC and BIANYS leadership will do anything but hold DOH accountable.

Some examples:

  • The council was asked to look into the blatant injustice of the state’s TBI Waiver complaint line managed jointly by the DOH and BIANYS. Complainants are never told the outcomes of their complaints, a lack of due process by any measure.
  • With only one or two exceptions, the council has tip-toed around the fact the DOH has told TBI Waiver providers they cannot side with complainants at Medicaid Fair Hearings. BIANYS has completely avoided addressing this issue.
  • The TBISCC and BIANYS remain dead silent even though a recent article in the Albany Times Union  and this blog have reported DOH’s effort to use any excuse under the sun to discontinue housing subsidies for brain-brain injured individuals even when doing so would leave them homeless and jeopardize their lives. 

One question that needs to be asked is this. Is the Kaplen-Avner show the problem? A step in the right direction would be for  Kaplen and Avner to step down, then we would find out.

 

Keeping it simple

Many of us, and I am no exception, get so caught up in the perpetual swirl of life’s struggles that we forget to relax, breathe, keep things simple. We forget to live.

Whatever the struggles we each face, either by choice or by unavoidable circumstance, none deserve so much sway over our lives that we lose sight of what is truly wonderful about life, and what wonder is there for us to experience, even with the struggles.

As an advocate, primarily in the arena of brain injury, there is so much dysfunction and bigotry to address I can, and at times have, found myself doing little else, save for reading: a habit that has sustained me through the darkest times, that’s for sure. I live in state with a department of health packed with people who, with some very real exceptions, couldn’t care less about those who live with a brain injury. I live in a state with a brain injury council, called the Traumatic Brain Injury Services Coordinating Council, that has pretty much failed to live up to its stated purpose from day one. I live in a state with a brain injury association that, on the one hand is a remarkable and desperately needed educational presence on brain injury, and, on the other hand, claims to be an advocacy agency when it is not.

In short, the issues with all of the above could consume anyone whose instinct is to promote equal rights.

It is clear to me that being consumed by any one thing, even when honorable, is not healthy, and, in the long run, makes one less effective when it comes to this one thing in the first place.

When you think about it, what is advocacy for equal rights actually about? It’s about the right of every individual to be who they really are in life,  safely, equally.  In life means the ability to live life. To fall in love and walk down the street holding hands with the person you love. It means being able to go out for coffee or a meal or read a book. It means being able to watch movies, birds, people, sunsets, sunrises, thunderstorms, snowfalls, oceans, rivers, streams. It means being able to listen to music, laughter, wind, thunder, conversation, and so on. It means experiencing life, which none of us can do as well as we have a right to do if we are consumed by any one thing.

Keeping it simple so much means staying in the moment you’re in. As a friend of mine recently gone from this life said to me: “Remember, Peter, the moment you’re in is the only place you have to be.”