Tag Archives: BIANYS

Pivotal Meeting for NY State’s Brain Injury Council

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So far the New York State Traumatic Brain Injury Services Coordinating Council (TBISCC) has done anything but live up to its legislative mandate: offer proposals and ideas and guidance to the state’s Department of Health, a state agency that ought to be the national role model for resisting any and all input from anyone other than itself, to improve the lives of New Yorkers with brain injury disabilities. Thus far the TBISCC and the DOH is a marriage made in some kind of bizarre, dysfunctional, self-absorbed heaven.

The council meets May 31 and if the agenda (provided below) is any indication, the first portion of the meeting will provide members of the public a close-up view of two of the primary impediments to  equal rights for New Yorkers with brain injury disabilities:  Michael Kaplen and Judith Avner. Kaplen has proven in more than one venue that he is little more than a bully and Avner, the executive director of the Brain Injury Association of NY State sank to a new low last year when she blocked people with brain injury disabilities from being on a committee formed to – wait for it – represent people with brain injury disabilities.

One wonders what Avner’s presentation on “behalf of BIANYS” will include. BIANYS staff members past and present have said disagreeing with Avner on any front results in a nasty backlash; it is made clear that Judy is not to be questioned. At any rate, given that BIANYS has remained dead silent in the face of the DOH’s behavior (one example being a DOH directive that TBI Waiver Providers cannot advocate for their clients at Medicaid Fair Hearings, a move that viciously undercuts the chances that the client living with a brain injury disability will prevail) I imagine Avner’s presentation of, well, Avner, will be a dazzling display of charm-filled lip service.

Lest you think I am overstated the problems named Avner and Kaplen, one must remember that until recently, both continued to claim leadership of the council, Kaplen as chair, Avner as vice-chair, even though  Kaplen’s term had expired in 2004, Avner’s in 2003.

The DOH has allies in Kaplen and Avner. Neither will allow the TBISCC or the BIANYS to hold the DOH responsible for the suffering it is inflicting on New Yorkers with brain injury disabilities. Allowing the likes of Maribeth Gnozzio to head up the state’s TBI Waiver makes it clear the DOH doesn’t care a whit about people with brain injury disabilities. It is only by, one would assume, the grace of God (and her husband’s agreement with the FBI) that Gnozzio did not face criminal charges back when her husband, Robert C. Janiszewski, a former County Executive of Hudson County, New Jersey, pled guilty in 2002 to taking more than $100,000 in bribes. In a 2003 interview, the late Paul Byrne, a childhood friend of Janiszewski’s who was indicted for collecting thousands of dollars in bribes for Janiszewski,  said Janiszewski gave him up to spare Gnozzio from prosecution.

The one ray of hope for those who would like to see the council get its ethical head  above water will occur after lunch when the council will decide whether Barry Dain or Kaplen will be the next council chair. If Dain is elected, there may be real hope for the council. If Kaplen is elected, members of the council will have shown their real colors, colors that put them in lockstep with the likes of Kaplen, Avner, Gnozzio, and others.

If Dain is elected, then, perhaps, the council will reject the DOH’s proposed changes in the council’s bylaws. Examination of the  proposed changes to the by-laws  reveals a blatant DOH 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.

I can tell you that this upcoming meeting will be closely watched. If, in fact, Kaplen is re-elected and the council adopts the DOH changes to the bylaws, direct action will be required and will be forthcoming.

 

 

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

Empire State Plaza, Concourse Level

Meeting Room 125

Friday, May 31, 2013

10:30 AM – 3:30 PM

AGENDA

10:30 – 10:45 Welcome

Welcome new member Megan Clothier

Review and Approval of 1/23/13 Meetings Minutes

10:45- 11:15 Review of Brain Injury Association of New York State TBI Recommendations

Judith Avner, Executive Director, BIANYS

11:15 – 12:00 State Agency Updates

NYSED Gerri Malone

OPWDD Nicole Suto/Nina Baumbach

OMH Debby Zeterstrom

CQC Colleen Scott

OASAS Cher Montayne

OVS Ann Marie Calabrese

DFS Jeff Pohl

DOH Lydia Kosinski/Helen Hines/Kitty Gelberg

12:00 – 12:45 LUNCH (Members on their own)

12:45 – 1:15 Election of Chair

Nominees: Michael Kaplen and Barry Dain

1:15 – 2:30 Discussion of role and mission of TBISCC/

Discussion of Bylaw Revisions

2:30 – 3:00 Public Comment

3:00 – 3:30 Summary/Next Meeting Dates/Adjournment

Remembering Frank Pierce

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Frank Pierce died on this day in 2008. The kindness and compassion Frank showed me and the many he loved and cared about was genuine and loving and sincere beyond description. Those who knew him knew a man whose caring and commitment to others, brain injury survivors and their loved ones were what I witnessed the most, was matched by few and outdone by none. He touched the hearts of those who knew him, including mine.
 – Peter

LOVE YOU BROTHER

Remember to say I love you to those you love. I don’t know what it is about those three often maligned and misused words, I love you, that makes them as special as they are, but I do believe that when they are meant, they should be said. Not only to the many who deserve to hear it, but by the many who deserve to say it.

My friend Frank died at 7:35 yesterday morning with the two he loved and who loved him the most by his side. Like many others, I loved Frank. And whenever I’d say, Love you Frank, he’d smile at me and say, Love you brother. And I knew he meant it. I can still hear his voice saying those words to me, Love you brother. He meant them too, all three of them.

The words I love you are remarkably hard for some of us to say. For still others, they are difficult to hear. Still others avoid the phrase because it is has been used as a tool for manipulation and, in some cases, cruel manipulation, in too many scenarios.

However, I think the only necessary guideline for saying it is honesty. Say it if you mean it. Your history, those who betrayed you, used the phrase to manipulate you in one way or another, denied your ever hearing the phrase, none of these people deserve so much control over you today that they stop you from saying it at all.

A woman I love very much said to me recently, “Peter, you love everybody.” Not true. Not by a long shot. Rest assured, there are people I don’t love and there I even people I dislike, some intensely. But what I do believe in is letting those you feel love for know it. While there is certainly such as thing as too much hate in the world, there is no such thing as too much love. However, there is such a thing as not enough love – and not enough expression of the love that is there.

The first game the Yankees played after Yankee captain Thurmon Munson’s tragic death in 1979 was in Yankee Stadium against the Baltimore Orioles. The Orioles catcher was Rick Dempsey, a former Yankee and back-up catcher for Munson. The Yankee manager was Billy Martin. Dempsey sent a note to Martin in the Yankee clubhouse before the game. In it he told Martin that he, like so many others, loved Thurman and he, like so many of us, did not always remember to tell people he loved that he loved them. And so, in this note, he told Martin that he loved him.

And so if you love people in your life, whether you love them as friends or more, tell them. Use the words I love you – all three of them. I would ask the few of you who might feel saying I love you is a wimpy thing to do why saying it is so hard for you to do? Were it an act of weakness, to say them, it ought to be easy, no?

Take care of yourselves in life. Love each other as best you can. And when you do, say so.

I am going to miss you terribly, Frank.

Love you brother.

How could it happen?

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After reading a recent blog piece about a New York State brain injury council being in total disarray a friend of mine asked, “How could it happen?”

Good question.

How could a council, formed by an act of a state legislature, drift so glaringly far from its mandated purpose? The New York State Traumatic Brain Injury Council (TBISCC) is, “Under Article 27-CC of the New York State Public Health Law…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.” Yet, as readers of this blog already know, nothing has happened.

There are two people claiming to be chair and vice-chair who aren’t. If the council were to abide by its by-laws, one of the two hasn’t been a member of the council for more than nine years.

What is it that leads people to turn a blind eye, remain silent, including other council members, when others blatantly break the rules? That, and what leads those who break the rules to do so knowing their actions will damage the lives of people with disabilities, in this case New Yorkers with brain injuries? It is not a coincidence that several of the current vacancies on the council are meant for people with brain injuries, yet the agenda for the upcoming December 10 meeting doesn’t mention this.

Back to, how could this happen?

When my friend first asked the question the first thing that came to mind was Abraham Lincoln’s quote: “Nearly all men can stand adversity, but if you want to test a man’s character, give him power.” 

Sit in on a few meetings with Michael Kaplen ( he still insists he is the council’s chair) and you’ll quickly learn he is a bully. I’ve been in meetings with him as participant and observer and witnessed him yelling at people and threatening people. Judith Avner, whose term on the council has been over for more than nine years yet still claims to be the council’s vice-chair, is another kettle of fish entirely. She charms, cajoles, and, were there awards for lip-service skill, would win gold or silver every time.

Having said all this, Avner and Kaplen are not hard to understand. Both strike me as being rather weak and insecure people who, by inflicting their will on others are able to feel some sense of control in life and some sense of, well, power. But what’s the cost? New Yorkers with brain injuries and their loved ones suffer as a result. The fact Kaplen and Avner, both attorneys, know their behavior leaves New Yorkers with brain injuries in the lurch reveals a lack of character.

The real question is, what empowers the enablers? The New York State Department of Health knows full well the council is a mess. Thus far it has said and done nothing. In fact, it sends high-ranking staff to council meetings and answers some council questions.  Perhaps one reason for the lack of DOH oversight can gleaned by  considering a July 5, 2011 blog post: “Minutes from a September 9, 2003 meeting say the council drafted a letter to then DOH official Betty Rice expressing the council’s dissatisfaction “with not being allowed to review (TBI Waiver Manual’s) revisions.”  This underscores what has been an ongoing pattern with the DOH for years; they are not interested in outside input. An ineffective council is to its liking.

But why the silence from other council members? Why the silence from members of the NY State Legislature? What are people afraid of, if, in fact, it is fear that gets in their way?

Perhaps, if council members, and others, listened to and heeded the advice of two heroes of mine (and many others) things might take a turn for the better.

  • Elie Wiesel: “Take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented.”
  • Dr. Martin Luther King, Jr:  “Our lives begin to end the day we become  silent about things that matter.”

This writer did send an email along with information about the council to Dr. Nirav Shah, the New York State Commissioner for the Department of Health.

Time to say goodbye to BIANYS’ Avner

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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.

How do you sleep at night?

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I need to put two things on this essay’s table in order to, I hope, make my point.

First. When I was a boy I complained to my father about a cliché, I don’t remember the cliché in question, what I do remember was my father’s thoughtful and accurate response. “Well, there’s a reason they become clichés.” He was and is right.

Second. I used to believe as I think many do that if you were able to factually establish that a behavior, a policy, a method, a strategy, would actually hurt innocent people, people would automatically care. Wrong. A sickening truth about some people is they simply don’t care. Even when you establish that, for, lack of a better phrase, their actions will hurt others, they still don’t care.

Okay, you may be wondering what it is that has me thinking about all this. Two things, really. An aspect of the presidential race and some who claim to care about those of us with brain injuries and it is becoming increasingly apparent they don’t.

When it comes to the  presidential race it is the blatant lying being done by the Romney-Ryan ticket that falls under the microscope of this missive. If they are elected and if they do what they say they will do and have done in the past the rights of women in my country will be, in a word, decimated. On top of that, millions will lose their health insurance and Romney’s assertion that we don’t let the uninsured die in our country because they can go to the emergency rooms is a lie, a flat out lie. He and those in his circle know damn well people will die if the affordable care act is  reversed. They don’t care.

And when Romney and Ryan say they support equal rights for women, they are, once again, lying. To lift a cliché into the light, actions speak louder than words. Ryan voted against the Lilly Ledbetter Fair Pay Act, which helps women fight for equal pay for equal work; he voted for a bill tagged as the “Let Women Die Bill”  that would allow hospitals to refuse abortion care even if the mother’s life was in immediate danger and he co-sponsored a bill that would deny rape victims on Medicaid access to abortion. Romney’s no better. After all, he picked Ryan as his running mate (safe to assume he agrees with him) and, while governor of Massachusetts, Romney vetoed a bill giving rape survivors access to emergency contraception (to it’s credit, the Massachusetts legislature overrode the veto).

So, if you think Romney and Ryan support women’s civil rights, you’re either delusional, gullible beyond comprehension, or, like Romney and Ryan, you’re lying and you know it, and, like Romney and Ryan, you don’t care either.

Now, brain injuries. For several weeks now members of the Brain Injury Association of NY State as well as former BIANYS board members have been in an email exchange with BIANYS seeking answers to some incredibly reasonable questions. Now, the two people at the top of the BIANYS food chain, as it were, are Marie Cavallo, the board president, and Judith Avner, the executive director. Let me quickly point out that is has been made clear that Ms. Avner will communicate with us in this email discussion (how does she earn her roughly $2,000 a week salary I wonder?).

The questions we are asking?  Well, judge for yourself.

1) How many people with brain injuries does BIANYS employ and how many have been employed since Ms. Avner  took the helm in the late 1980s. No answer.

2) How do you (BIANYS) decide what you are advocating for or against, how do you let membership know, and how do you solicit membership’s input? Ms. Cavallo referred us to their annual reports and newsletters but these questions are not answered in either, not even close. We pointed this out and they responded with…no answer.

3) Ms Cavallo said the reason she, not Ms. Avner, is talking with us, is because she represents BIANYS. And so we asked another reasonable question. If we, as BIANYS members are not part of BIANYS, then are we, the very people she and Ms. Avner claim to care about so much, merely an outside entity? Does BIANYS sees its members as something separate and apart from, well, BIANYS? If so, we asked Ms. Cavallo, who exactly is she representing?  No answer.

The point is you can’t tromp around the state asking everyone and anyone for money because you say you care about us and are on our side and then when we have questions ignore us and simply hope we’ll go away (we won’t) and expect us to believe you actually do care.

All this brings me to the cliché that is the title of this essay, a cliché that appropriately applies to the likes of Romney and Ryan and Avner and Cavallo. How do you sleep at night?