Category 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.

Kaplen & Avner hijacked NY State’s Brain Injury Council

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In what can only be described as a self-serving power grab and utter disrespect for their colleagues and brain-injured New Yorkers, Michael Kaplen and Judith Avner continue to control the New York State’s Traumatic Brain Injury Services Coordinating Council (TBISCC) even though their terms on the council expired in 2004 and 2003 respectively.

A document released to a member of the Kahrmann Advocacy Coalition by the New York State Department of Health reveals that Kaplen’s term expired on February 12, 2004 and Avner’s term expired on August 9, 2003.  The fact they continue to show up at meetings and claim the mantel of council chair and vice-chair is, at minimum, an astonishing display of arrogance and, in an even harsher light,  a rather self-serving desire on both their parts to be the center of attention and control the state’s dialogue on brain injury.  Avner is the current executive director of the Brain Injury Association of NY State,  Kaplen is its past president. Both are lawyers. Advertisements for Kaplen’s law firm display a focus on representing brain-injured New Yorkers.

The TBISCC was formed in 1994 by an act of the state legislature and it can be and should be an important presence beneficial to brain injured-New Yorkers, providers of services to brain-injured New Yorkers and, not at all incidentally, the Department of Health. By design and purpose the council is there to provide the Department of Health with proposals for services for Brain-Injured New Yorkers. A review of council minutes under Kaplen and Avner reveals that the council has offered virtually nothing under their watch in the way of proposals.

As a brain-injured New Yorker and as one whose name is linked to the largest grassroots advocacy group for brain-injured New Yorkers in the state, I can tell you that the TBISCC must be allowed to flourish and act on its mission, two things that will not happen if it continues to be hijacked by two individuals who are not even members of the council anymore.

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.

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.