Category Archives: TBI

Memo to BIANYS, TBISCC & DOH: Don’t get comfortable

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I smiled this morning when I heard Occupy Wall Street protestors plan on marching in front of the homes of Wall Street bigwigs; it is, among other things, one of the very tactics the Kahrmann Advocacy Coalition (KAC) is currently considering. Marching in front of the homes of those in this state whose claims to support the rights of Brain-Injured NYers are, more often than not, nothing more than lip services. Yet some of them make a good living off the backs of those of us who live with brain injuries.

Do not for one moment think KAC’s actions are entirely up to me; they are not. There is a membership and a leadership team and together the next steps will be defined and enacted. What is clear is this: direct action is needed.  We have given the state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and Department of Health every opportunity to do the right thing. It seems evident that the TBISCC’s biggest obstacle may well be its leadership: Michael Kaplen and Judith Avner, which is why the idea of protesting in front of their homes is being considered. Both BIANYS and TBISCC will not so much as utter a syllable if the utterance places them at odds with the DOH. God forbid.

This brings me to another tactic under consideration. Urging the state legislature and the governor to slash funding for BIANYS, meeting with the DOH and OPWDD (Office for People with Developmental Disabilities), both state agencies provide large grants to BIANYS, and pressuring them to cut the grants unless BIANYS lives up to its stated purpose.

The Kaplen Avner crowd remind me of those who, left to their own devices for long periods of time, grow comfortable and begin to experience themselves as immoveable objects. Well, Kaplen and Avner should not get too comfortable. I would suggest that others like the DOH’s Maribeth Gnozzio, Mark Kissinger, Mary Ann Anglin and Commissioner Shah as well as BIANYS President Marie Cavallo not to get too comfortable either; we may be protesting in front of your homes too.

BIANYS ignores its members rights & more

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The Brain Injury Association of NY State will not support the rights of brain-injured New Yorkers to be informed of the results of the complaints they file through the joint BIANYS-NYS Department of Health TBI Waiver Complaint line. The DOH refuses to tell complainants the results of their complaints. BIANYS President Marie Cavallo and BIANYS Executive Director Judith Avner have chosen to ignore a September 14 email sent to them by this writer on behalf of the Kahrmann Advocacy Coalition, the largest advocacy group for brain injury survivors in the state, which read exactly as follows:

Please note that many are copied and blind-copied on this email, including quite a few BIANYS members who are told by you that BIANYS is the leading advocacy organization in the state.

We have one specific question and would like a direct answer to this specific question. Anything less and we will continue to conclude BIANYS does not believe TBI Waiver complainants should be given the full results of their complaints.

Does BIANYS believe TBI Waiver complainants should be given the full results of the complaints they file through the TBI Waiver complaint line current answered by BIANYS staff? Yes or NO

Keep in mind, a large number of people, including your members, are watching this email and awaiting your answer.

Peter Kahrmann, KAC Founder

Last I knew BIANYS had less than 400 members, however, a significant number of those members also belong to KAC, including me. So, it is a statement of fact to say BIANYS refusal to even answer the email is, once again, another example of BIANYS (which falsely claims to be the leading advocacy organization in the state) ignoring  the rights its own members and the rights of all brain-injured New Yorkers and their families.

So far, the BIANYS board of directors has done nothing to address this.

Memo to BIANYS board and TBISCC members

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The leadership of my state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and the Department of Health are all fully aware of the damage being inflicted on the lives of brain injury survivors throughout the state by the aforementioned DOH and, because of their silence (complicity), the brain injury association and the council.

The BIANYS board of directors and the members of the TBISCC need to dump their “heads of state” and get the bows of both ships pointed in the right direction – a direction that really does advocate for brain-injured New Yorkers and, in the case of BIANYS and others,  not simply use those of us with brain injuries to fill their coffers and inflate their egos.

This September 12 the TBISCC will meet and have some presentation from Mt. Sinai Medical Center (which is all well and good but history shows that all the presentations given to the council over the years have not translated into a single proposal by the council to the DOH; feel free to email me and I will send you all the council minutes if you find this hard to believe) and then they will discuss a concussion bill which is important but they will not say a thing about the brain-injured New Yorkers having their TBI Waiver services cut or being discharged off the waiver altogether, nor will they say a word about waiver participants who are having their housing subsidies cut or ended putting some at risk of homelessness and death. A federal judge protected one life when he stopped the DOH from throwing a brain-injured senior out of her home and asking her for $24,000 in the process.

BIANYS and the TBISCC have been dead silent on all this, yet on September 12th there council chair Michael Kaplen will sit in all his pompousness and there Judith Avner the BIANYS executive director will sit in all her feigned righteousness and both will claim straight-faced to care about those of us who live with brain injuries. If either cared they would not be silent about the matters mentioned in this particular missive, but they are. The DOH’s Maribeth Gnozzio may or may not be there, but if the DOH actually cared about brain-injured New Yorkers Gnozzio would not even be in the picture. All three of these folks seem to be tiny-minded narcissistic control freaks and in the long run, are no more important than bird droppings on a windshield (my apology to the bird population).

The challenge contained in this blog piece is to BIANYS board members and council members. Do your leaders truly represent where you yourself stand when it comes to brain injury survivors? Are you really comfortable with the fact neither group holds the DOH accountable nor does either group live up to its mandate? Are you truly comfortable with the silence both groups exhibit in the face of the DOH’s brutality to those you claim to care about?

For example, I would urge BIANYS board members to carefully review the ebits the organization sends via email to its members. Look at the advocacy section in each and you will not find one example of BIANYS advocating for anything other than giving its support to the concussion bill.  I would urge council members to ask for and review council minutes over the years and see if you can find a single example of a proposal by the council to the DOH. Email me at peterkahrmann@gmail.com and I will send them to you. I will also keep your identity private unless directed otherwise. I’ve already talked with some in both groups.

I would urge members of both groups not to fear Avner’s anger nor Kaplen’s for that matter. Kaplen’s bellicose behavior would be rather funny were it not so disrespectful to colleagues and those he claims to care about. Hell, there was a time Kaplen represented me in a lawsuit against the state’s Crime Victims Board which, at the time, was trying to stop reimbursement for any and all phone therapy sessions for crime victims. Kaplen will claim he was the only attorney willing to help which was not true, he offered to help and in the process and tried to get the state to pay him $500 an hour for his efforts (he was helped free of charge in those efforts by others, by the way), money that had the judge not rejected his request, would likely have been taxpayer dollars. I asked Kaplen to speak with me first when the ruling came in so we could discuss how to release it to the media.

Can you guess how I found out the judge ruled in our favor? From a reporter, a reporter Kaplen had called and bragged to. It was then I called and left Kaplen a voicemail message explaining that he should feel a sense of joy that he had not taken this liberty, say, 25 years earlier, because in those days I would’ve simply taken him outside and kicked his ass.

While there will always be Kaplens and Avners and Gnozzios among us, there will always be Kings, Mandelas, Gandhis, Wiesels, Wiesenthals, Darrows, Greers, Steinems, Father Mychal Judges, and more. The question, therefore, is this: are there any of the mindset reflected in this latter group that are on the BIANYS board and the council? If there are, then the days of Kaplen and Avner should be short in number.

Is the Kaplen-Avner Show the problem?

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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

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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.”