Category Archives: BIANYS

More on compassion, love & advocacy

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Three very thoughtful comments in response to the last blog post,  Anger, compassion, love, advocacy & BIANYS,  along with some equally thoughtful emails and phone conversations have helped me recognize it would be wise for me to write more about what one reader accurately summed up: “Your recent blog piece sounds like you are reviewing your advocacy tactics.” It’s true. I am and always try to with varying degrees of success.

All of us are wise to keep track of the patterns we find ourselves in. Sometimes it takes those close to us to point them out, and if we are centered enough, we can try on these observations and change accordingly without falling into the trap of clinging to old habits. John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” How true.

I want to comment a bit on some of what I’ve read and heard in response to the last blog piece. But first  we must stipulate to the fact that the very act of holding people and organizations accountable may upset people. I can’t do anything about this. What I can do is advocate with intensity and tenacity and honesty and do my level best not to make anything sound personal. But, if leaders of various groups, government agencies, and others blatantly ignore those they claim to serve, I am going to say so. If organizations do not do what they tell people they do, I am going to say so. I have no other choice. One thing is very clear, things can’t go along business as usual when it comes to the realities currently being faced not just by brain-injured New Yorkers but by all people with disabilities in this state and beyond.

What I must pay close attention to is my contribution to the push for change. People in leadership positions must recognize and, in their choices, live the following reality: the Kahrmann Advocacy Coalition is not about Peter Kahrmann any more than the Brain Injury Association of NY State is about Judy Avner or Marie Cavallo, or the Traumatic Brain Injury Services Coordinating Council is about Michael Kaplen and Judy Avner. These groups are about and only about the people they are there to serve. And if any of us – including me! – gets too it’s-all-about-me, people around us need to call our attention to this and we need to listen and change accordingly.

Some things are not personal. It is not a personal attack for me to point out that Michael Kaplen and Judy Avner are sitting on a council even though their terms expired seven and eight years ago respectively. There is something not right about this and it needs to be addressed and I would point out this truth gives them the opportunity  to do what anyone – including me – in leadership positions must do – and that is recognize when we’ve fumbled or gone wrong and do the right thing. There is nothing personal about my pointing out that the council, certainly under Kaplen’s chairmanship, has failed to do pretty much of anything it was designed to do, and this is something he needs to reflect on, step down, and let others take the lead.  Upon hearing that George Washington stepped down after his second presidential term, King George of England said, “If Washington gave up power he is the greatest man on earth.”

Now, to the comments.

One person wrote in a beautiful statement about Marie Cavallo and I could not agree more. Marie has very much given and continues to give her heart and soul to the cause of brain-injured New Yorkers. It is true too that she is in a position where speaking what she really thinks is politically risky, and here is where, like me, she may want to do some reflection; is the “forced” silence worth the position? Only she can decide that. I love her no matter what she does, and I can say the same about Judy.

Another person wrote, in part, about the importance of establishing partnerships; they too are right. It is important (I am quite sure my correspondent knows this) that groups who form partnerships understand they are partnerships, meaning one group can’t simply say to another; you must accept everything about us as is, especially when some of the as is hinders or impedes equal rights for brain-injured New Yorkers.

Another person wrote in pointing out that BIANYS  is no longer the answering component for the complaint line, now the regional representatives for DOH will do that. Two things: this change does not change the fact complainants never get the results of their complaints and perhaps now BIANYS will be able to openly advocate that they do.

We are all works in progress – including me.

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.

In Praise of Bill Combes

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When you live with a disability, in my case a brain injury, you encounter those whose commitment to your rights is rooted in self-serving lip service and then you encounter those whose integrity, compassion and commitment to people with disabilities is so real and genuine they glow. In the case of Bill Combes, I suspect this good and decent man can read by his own light.

Bill Combes worked out of the New York State Commission on Quality of Care (CQC) for something in the neighborhood of 30 years and as of Wednesday this week, has entered into well-deserved retirement. If ever there was one deserving of accolades from the White House to the State house to the house on Main Street, it is Bill Combes.  The CQC is the Protection and Advocacy agency contracted with the federal government for brain-injured New Yorkers like me. The only flaw in the CQC is, like all such agencies, they never have the number of staff they want, and, frankly, deserve.

Disability rights advocates like me always knew they would get a serious attentive audience when talking with Bill. We also knew that Bill and the CQC would do all it could to fight for the rights of brain-injured New Yorkers. Unlike the state’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council and, for that matter, the Department of Health, Bill Combes and the CQC always offered more than just lip service.

Those of us with disabilities have lost a wonderful ally now that Bill has retired. But, wherever he is, I hope he knows that all the lives he touched are better off because of him. Unlike too many others, he never experienced or treated anyone with any disability as being less than. The completeness of each person’s humanity and worth was never – and I mean never – lost on him.

I am blessed to know him and have had the privilege of working with him. Now it is his family’s turn to have the all of him, and this includes his first grandchild, a granddaughter; she’s in for quite a treat.