Tag Archives: TBI Waiver

Anger, compassion, love, advocacy & BIANYS

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I am always surprised when I hear there are or may be people who are scared of me or perceive me as being a walking bundle of anger when it comes to my advocacy. Our view of ourselves never matches the way others see us and so we are fortunate to have friends and loved ones who are honest with us.

There are some who mistakenly believe I have some personal anger and dislike for people like Judith Avner and Marie Cavallo, executive director and president of the Brain Injury Association of New York State. The fact of the matter is I love them both very much and if word reached me tomorrow that life had wounded either of them in any way I would be there for them in a  heartbeat. The fact we have  some significant differences on other fronts in no way diminishes my love for each of them.

There is a fine line between holding people and organizations accountable as opposed to lashing into them with what comes across as personal anger;  and I am not about to pretend or claim that I’ve walked that line perfectly. I do know that my responsibility, a chosen responsibility, is to be honest with the world around me, which means being honest about what I know to be my flaws. I am not perfect nor will I ever be. I am deeply honest and deeply compassionate and I am deeply committed, right to the marrow of my very soul, to equal rights for all people – all people.

When it comes to equal rights, whether they be for people with brain injuries, blacks, Latinos, Jews, gays and lesbians, Asians, Muslims and so forth, it is not about me, and I can’t make my choices or write pieces here in this blog based on what I find emotionally comfortable or pleasing. On a deeply personal level I hate holding people I love like Judy and Marie publically accountable for things; my heart hurts over my current estrangement from BIANYS. I have had a relationship with them for many years.

BIANYS does certain things magnificently. They are the best educational  and information resource on brain injury in the state (It blows my mind that the New York State Department of Health doesn’t take advantage of BIANYS trainings for its staff who are involved with brain injury).  BIANYS has a grant from OPWDD (Office for People with Developmental Disabilities) that allows them to employ a group of people who are able to advocate for brain-injured New Yorkers if they received their injuries before the age of 18. The BIANYS staff who do this work are superb. However, BIANYS does  not have the staff and, in my view, because they do not want to risk losing a grant from the New York State Department of Health, will not publically hold the DOH accountable for some of its ongoing horrendous behavior when it comes to the TBI Waiver, and, as a result, does not publically advocate for people on the TBI Waiver, people  who sustained their injuries over the age of 18 and under the age of 64. Therein lies our differences; you can’t claim the mantel of leading advocacy agency for brain-injured New Yorkers in the State and remain silent when it comes to DOH behavior.

Now, about my anger, and yes, it is there, not as much as you might think but there are times, yes, I am angry. It is true that behind most anger is heartbreak, sadness. And it breaks my heart, deeply saddens me when I see brain-injured New Yorkers being treated by the DOH and others as if they are less than human, and, in some ways, as if they are disposable. And so I can’t remain silent, nor will I. All I ask is that people and organizations actually do what they say they do. No more, no less.

But let me say again; Judy and Marie are not my enemies, I do not dislike either of them. As I said, I love them both, very much. I hope as the days move forward some of the gap can be closed. We’ll see, it takes movement on both sides, one day at a time.

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.

Brain-Injured NYers outrank Michael Kaplen’s hissy fits

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The New York State Traumatic Brain Injury Services Coordinating Council this month responded to the news that the lives and homes of brain-injured New Yorkers are in danger because of the state’s Department of Health by immediately adjourning their meeting.

No council member said a word when they were told  a federal judge protected the life of a brain-injured senior by blocking the DOH’s attempt to end her services and collect $24,000 in back housing subsidy from her.  No council member said a word when told that the DOH has been conducting a statewide campaign  to either end or slash services and housing subsidies to brain-injured New Yorkers, even though doing so puts people’s lives and homes at risk. No council member said a word when told that brain-injured New Yorkers who file complaints related to the TBI Waiver are never given the results by the DOH. Not surprisingly, this writer received written notice from the DOH yesterday denying my Freedom of Information Law request to see the results of the complaints I’ve filed. No council member said a word when they heard that the DOH has yet to provide them (or anyone for that matter) with a written policy to memorialize the verbal directive blocking waiver providers from advocating for their clients at Medicaid Fair Hearings, an action that also puts brain-injured New Yorkers at risk.

Instead, the council, at the behest of its perpetually self-absorbed chair Michael Kaplen, adjourned the meeting.

Now, do I actually think that no council members care about the issues raised above? No, I don’t think that at all. In fact some do care and care very much. Then why their silence? I think to some extent the answer rests in the understandable reluctance to deal with Kaplen’s outbursts of temper, his hissy fits.

Kaplen reminds me of the kid in the schoolyard who always throws a hissy fit when he can’t have his way. I was in a Brain Injury Association of NY State (BIANYS) board meeting once when Kaplen, angered that some in the meeting did not agree with him that a board member should remain on the board even though he didn’t attend meetings, proceeded to raise his voice, wag his finger, and threaten to  go around the table and embarrass everyone in the room. It will surprise no one to learn I verbally stepped into him telling him  he was out of line threatening people simply because they didn’t agree with him. People were so upset by his behavior that the meeting took a break and one board member, a brain-injured survivor like myself, was so upset she was trembling.

Kaplen is known for his hissy fits.

This TBISCC meeting was no different. Council member Barry Dain, as good and decent a person as there is in the field of brain injury, found himself dealing with a Kaplen hissy fit when he shared an issue that had surfaced with some providers about perceived inequities in surveys conducted by the Office of the Medicaid Inspector General (OMIG). Kaplen appeared to be trying to shut Dain down by venting his anger and frustration with the state’s Provider’s Alliance – a group of 40 to 50 TBI Waiver Providers – when, as Dain patiently explained, he was not representing the Provider’s Alliance.

In the council meeting prior to this one, Kaplen got himself worked up into a hissy fit when two council members, Dain and Bill Combes, advocated for the right of a brain-injured New Yorker in attendance to speak before the end of the meeting. In a moment best described as an equal mix of comical and, quite frankly, pitiful, Kaplen accused his two colleagues of trying to stir the pot.

It is not surprising that the council’s assistant chair, Judith Avner,  did not seek in either instance to rein Kaplen in, after all they’ve been at the head of the table for years, both on the council and BIANYS, and that is part of the problem. Avner is the executive director of BIANYS, Kaplen its past president.

If brain-injured New Yorkers are going to be given the priority they deserve by groups like the council, members of these groups must step up and stomp out those who seek to control them by throwing hissy fits. Council members cannot afford to cower or respond in silence to Kaplen’s hissy fits. Hissy fits are like any behavior, as long as they get the person’s desired outcome, they won’t stop. 

When groups like the council are told the lives and homes of brain-injured New Yorkers are at risk, they can’t respond by adjourning the meeting because they are afraid of someone’s hissy fits. Whatever challenge one has to face  internally in order deal with a hissy fit pales in comparison to the challenges being faced right now by too many brain-injured New Yorkers because of the DOH.

NYS Brain Injury Association & Council stand against rights of brain-injured New Yorkers

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New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council are not interested in defending the rights of brain-injured New Yorkers.

  • Brain-injured New Yorkers who file complaints related to the TBI Waiver are never informed of the results by the state’s Department of Health. Both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position. 
  • Waiver providers are not allowed by the DOH to advocate for brain-injured New Yorkers at Medicaid Fair Hearings; both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position.
  • The assault on housing subsidies being inflicted by the DOH on brain-injured New Yorkers, a campaign that puts some at risk for homelessness and threatens the lives of others.  In one instance a federal court judge had to step in protect the life of one brain-injured senior from the DOH Campaign. Both BIANYS and the TBISCC are well aware of the DOH housing-cuts campaign; their silence on the matter reflects this position.

Both groups have been asked repeatedly to address all these  issues and while the TBISCC gives intermittent lip-service to the Medicaid Fair Hearings question, BIANYS – which proclaims itself the leading advocacy organization in the state for brain-injured New Yorkers – remains stone silent. At the beginning of yesterday’s council meeting Judith Avner, assistant chair of the council and executive director of BIANYS, said the council needed to hear what the actual DOH policy was regarding fair hearings. The DOH has for months been saying they’re working on a policy. One might think Ms. Avner’s statement was  reason for hope but when DOH official MaryAnn Anglin arrived at the meeting later no council member, including Ms. Avner, asked her about the fair hearing policy.

It seems one has a better chance of nailing Jell-O to the wall than getting the council to offer the DOH  proposals that have anything whatsoever to do with the TBI Waiver.  It had been proposed by this writer on behalf of the Kahrmann Advocacy Coalition the the council formally recommend that all DOH staff, contract and otherwise, be required to take training in brain injury now offered by BIANYS. DOH staff and contract staff involved with brain injury receive no mandatory training in the brain or in brain injury. While BIANYS is not the advocacy organization it claims to be, it is, without question, the best educational resource for understanding brain injury in the state. The council can’t even make this recommendation!

The DOH’s intentions are clearly sinister. One can only conclude that the reason for blocking waiver providers from supporting their brain-injured clients at Fair Hearings is to undercut the client’s ability to prevail, thus making it easier for the DOH to kick them off the waiver. One can only conclude the reason complainants are not given the results of their complaints is a reflection of the DOH covering its, well, ass. One can only conclude the reason the DOH is kicking as many people off the waiver and out of their homes as possible is to save money, even though this literally risks human life.

The silence of BIANYS and the TBISCC tells us both groups agree with the DOH, at least the leadership of both groups does.

When this writer spoke during the public comment period at yesterday’s meeting and told the council that there are brain-injured New Yorkers whose lives are at risk because of the actions of the DOH and the silence of BIANYS and the council, council chair Michael Kaplen responded by immediately adjourning the meeting.

BIANYS and TBISCC leadership needs to either step up or step out, and soon.

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.