BIANYS Avner sinks to new low

The executive director of the Brain Injury Association of New York State stopped people with brain injuries from being on the committee representing people with brain injuries, say several of the committee members whose identities will be protected.

When committee members complained that there was no one with a brain injury on the committee, Judith Avner is said to have claimed she and BIANYS represented people with brain injuries and pointed out that one of the  committee members had a family member with a brain injury. Avner does not have a brain injury.

Avner did not respond to several requests for comment.

The committee was comprised of providers and others and was tasked with drafting a proposal on behalf of New Yorkers with brain injuries for the state’s Medicaid Redesign Team. The proposal had to be filed by a specified date. Not long after Avner took her  stance against people with brain injuries being on the committee, the committee folded.

People with disabilities, including those of us with brain injury disabilities, encounter people and systems who hold to the inaccurate and misguided belief that we are unable to speak for ourselves. Slowly, slowly, this perception is eroding. However, when someone who has been in a leadership position in brain injury for years oppresses the very people she claims to care about, it is beyond unconscionable. It is a kind of moral fraud. It is also bigotry.

What would happen if a committee claiming to represent Jews or Italians or African-Americans refused to allow Jews or Italians or African-Americans to be on the committee? One would hope there would be an uproar of indignation. One would also hope that those blocking the participation of people they claim to represent are fired.

Life with a brain injury disability can be difficult enough; it is made all the more so when those who claim to care are some of the biggest oppressors.

Working against Hypocrisy in NY State

T.S. Elliot was right when he said: “There’s no greater heresy than to do the right thing for the wrong reasons.”

In the world of advocacy there is no greater heresy than hypocrisy, especially when it comes from those who say the right things for the wrong reasons, self-aggrandizement and the ability to feel powerful. There is also no greater heresy than those who, when asked for the specifics of their decisions and actions, engage in double talk, spin, or, in some cases, simply say nothing.

And so it is that I and others have been emailing with the Brain Injury Association of NY State in the hopes BIANYS will, for the first time in this writer’s memory, permit an open-dialogue forum online for its members. This is something quite a few members (including former BIANYS board members) have asked for. The request  was prompted by the fact that a long-term BIANYS member with a brain injury resigned as a BIANYS support group facilitator in part because BIANYS leadership, he explained, might hear that those of us with brain injuries are talking but they don’t really listen to what we are saying.

There is no argument that communication could use some improvement, not just between the members and BIANYS leadership, but among members statewide.

Thus far we have suggest an online message board. BIANYS, represented in the email exchanges by its board president, Marie Cavallo, said they don’t have time for a message board but would consider it in the future. It was then suggested that BIANYS open its Facebook pages so those who “like” the page can initiate comments and communicated with each other. At first the answer to this was no because, Ms. Cavallo explained, in the past providers has used an open FB format to advertise. It was pointed out the FB permits the user to block those that abuse the page. Ms. Cavallo  then said opening the FB was a possibility but there was concern doing so would be a drain on staff’s time.  BIA from New Jersey, Massachusetts, Connecticut and many others have open FB pages.

Transparency, an openness to communication and sensitivity to membership are critical components to any advocacy organization.

It is important to note that Judith Avner, the executive director of BIANYS, won’t take part in these discussions. At one point Ms. Cavallo explained this is because she, as president, represents BIANYS, but to whom? To its members? Are the members really seen as being separate from the organization? An unsettling notion at best. After all, Ms. Avner speaks at numerous conferences, fund raisers, speaks to the board, but, not, it seems, to the members. BIANYS financial statements reveal Ms. Avner is paid roughly $2,000 a week.

I don’t envy Ms. Cavallo her position. In all the years I’ve known her it is clear to me she has a good heart and genuinely cares. The question is, has she found herself in the position of, when it comes down to it, representing Ms. Avner.

We’ve asked other questions as well and are looking forward to the answers. Two of them are:

  • How many persons with a brain injury does BIANYS currently employ and how many persons with a brain injury has BIANYS employed since Ms. Avner took the helm on or about 1987?
  • What is BIANYS specifically advocating for or against, how are members and the public informed of these specifics, and how are the members included in determining advocacy issues?

Not answering the questions couple with an executive director who refuses to take part in the discussion carries the bitter taste of hypocrisy.

Let’s hope the answers come soon so we can all work together.

Michael Kaplen needs to go

If I could flip a switch that would completely remove one person from the world of brain injury, Michael Kaplen would vanish.

Apparently, the fact his term on NY State’s Traumatic Brain Injury Services Coordinating Council ended in 2004, coupled with the fact elections appear to be way overdue for the position of council chair, a post he clings to like Linus clings to his blanket, means nothing. The agenda released for the TBISCC’s meeting on March 1 (see below) reveals Kaplen has no intention of addressing either of these issues. One  hopes council members and the New York State Department of Health will hold him accountable, even though doing so may result in a Kaplen hissy fit.

Living with a brain injury is a formidable challenge and then some. But we are not the only ones facing tough challenges.  The challenges the New York State Department of Health  faces in it relationship to services for New Yorkers with brain injuries are formidable to say the least. So too are the intensely formidable challenges the Brain Injury Association of NY State faces in its work. 

But here’s the difference. When I talk with BIANYS leaders like Judith Avner, the executive director, and Marie Cavallo, the president, there  are things we agree on and things we disagree on. What all three of us have in common is this; we all truly care. When I talk with Mark Kissinger, Deputy Commissioner for the DOH, and Mary Ann Anglin, a division director for the DOH, there are things we agree and disagree on. But again, what do we have in common? We all care.

I don’t believe for a millisecond that Michael Kaplen cares. I don’t think he cares about anything but Michael Kaplen. I can also tell you that if you ever want to speak with him and can’t find him, just take out a camera and he’ll appear before your eyes in a flash. One particular rather self-serving behavior of Kaplen’s provides, perhaps, a clue to what he is all about. Past BIANYS board members as well as this writer remember times at board meetings that he would go around the table and place a business card – from his law firm – at each person’s place at the table. One year at the NYS DOH’s Best Practice Conference, at a time when Kaplen was the BIANYS president, a couple of us noticed that he was going around the entire room, which seated 1,000 people if not more, placing business cards from his law firm on each and every table. To this day he may not know that I went around the room and, with the help of an ally, removed nearly all the cards.

It will surprise few, if any, that when the BIANYS board voted on a well-designed ethics policy, every board member voted in favor, except for Kaplen. He chose to abstain.

In my opinion, Kaplen is a bully. I have seen him threaten to embarrass every member of the BIANYS board of directors because there were some who had an opinion that differed from his. In fact, his behavior was so nasty,  the board had to break so some members could gather themselves. One board member, a woman with a brain injury who was at her first meeting,  was so frightened by Kaplen’s behavior she was shaking.

In one of the first TBISCC meetings I attended I watched an exchange between Kaplen and Mary Ann Anglin. Ms. Anglin was asking a series of perfectly reasonable questions. Kaplen could not have been more unpleasant or acted more put out if he’d gone to Actor’s Studio  to master the display of both conditions.

At another TBISCC meeting an American Veteran in attendance who lives with a brain injury asked a question of a presenter. The veteran was immediately pulled up short by Kaplen who sternly explained that now was not the time for him to be asking questions. When, moments later, two council members offered to give their time to the veteran so he could voice his question, Kaplen yelled at them. Like I said, he’s a bully, and like most bullies, he’s a wimp.

Kaplen has also taken his runs at me. A few years back he represented me (with significant help from another attorney behind the scenes) in a case against what was then called the NY State Crime Victims Board. On one occasion I left him a voice mail with some questions. He then left me a voice mail angrily telling me not to ask him stupid questions (this from a man whose law firm claims to act with compassion towards people with brain injuries). Then, when the judge had the case under review, I left him a message telling him that whatever the judge decided, we needed to talk to determine how best to roll out our response to the media.

Can you guess how I found out the judge ruled in our favor? A reporter called me to ask me my response to the ruling. Who told the reporter? Right. Kaplen. And so, I decided to have some fun. I left Kaplen a voice mail. In it I told him that he should be grateful that it was not 25 years earlier because had he done this back then I simply would’ve taken him outside and slapped the sh*t out of him. He later whined that I’d threatened him. No, I explained, I did not threaten you. I simply explained what would’ve happened to you 25 years ago, so, be happy; you’re a lucky man.

The world of brain injury in New York is not lucky to have Michael Kaplen in their midst. It is my hope the council will stand up to his bullying and cut him loose.  If they do, then we can all be lucky together. And then, we can all focus on the difficult challenge of supporting each and every New Yorker with a brain injury in their just quest to reach their maximum level of independence.

****

As promised:

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

875 Central Avenue, Albany, New York

(Main Conference Room)

Thursday, March 1, 2012

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome

Introduction of New Member

Review and Approval of Minutes from

September 12, 2011 Meeting

10:45am – 12:00pm New York State Five Year TBI Action Plan

Carla Williams, Deputy Director, Division of Long Term Care, NYSDOH

12:00pm – 1:15pm LUNCH (Members on their own)

1:15pm – 2:00pm Impact of MRT proposals on TBI and NHTD waivers:

Medicaid Managed Care and Repatriation of individuals served out of NYS

Jason Helgerson, Deputy Commissioner, Office of Health Insurance Programs and NYSDOH Medicaid Director

2:00pm – 2:30pm Coordinated Medicaid Managed Care Program for Individuals with TBI

Joseph Vollaro, PhD.

2:30pm – 3:00pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:00pm – 3:30pm Public Comment/Summary/Next Steps/Adjournment

Kaplen & Avner hijacked NY State’s Brain Injury Council

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.

End the Kaplen-Avner Show

It will surprise no one to learn that New York State’s Traumatic Brain Injury Services Coordinating Council and  Brain Injury Association (I am almost repeating myself) are ignoring requests to look into the bogus complaint line for the TBI Waiver and investigate a state Department of Health’s directive blocking waiver providers from advocating for their clients at Medicaid Fair Hearings. It is sadly not surprising that the requests had to be made in the first place.

As readers of this blog will recall, the DOH never tells complainants the outcomes of their complaints. BIANYS, under the leadership of Judith Avner and, historically, of Michael Kaplen, entered into a contract with the DOH to answer complaint line calls knowing full well complainants are never given the results.

As long as council and BIANYS leadership are not held accountable by their members and, in the case of BIANYS, the board of directors, nothing will change, and the lives of brain-injured individuals in the state will continue to suffer for it.

Why are the requests being ignored? Because, if one agrees that actions speak louder than words, the leadership of the council and  the brain injury association (again I am almost repeating myself) don’t really care.  In fact, a July 5 publication in this blog reveals that the TBISCC has failed miserably to live up to its purpose which is, in short, to provide proposals to the DOH to best serve brain injury survivors in the state.  The only thing that falls into the category of a proposal is a proposed trust for brain injury survivors in the state that would also benefit the brain injury association.  Avner displayed some of her true colors by voting for the trust fund anyway even though doing so clearly violated the public officer’s law which council bylaws require members to follow.

Council chair Michael Kaplen’s penchant for self-aggrandizement  and adding cases to his legal coffers is well known. I remember a yearly best-practice brain injury conference hosted by the state’s Department of Health (they were around 2003 or 2004 when some of us noticed that Kaplen had deposited business cards from his law firm on every table in the conference; at the time he was president of the state’s brain injury association and then and now Judith Avner was the association’s executive director. A few of us went around the room and removed them.

Avner, on the other hand, is dazzlingly skilled at lip service. I’ve walked away from meetings with her thinking brain injury survivors are lucky she is around only to realize (at greater speed as the years have passed) that she didn’t commit to a thing, didn’t agree to a thing, and, above all, made sure BIANYS did nothing that even remotely held the DOH accountable.

One would like to think Avner and Kaplen would, in their heart of hearts, feel guilty for repeatedly letting brain-injured individuals down; but feelings like this require a conscience, something both  seem to be running short on.

As a friend of mine said recently, there needs to be a grassroots uprising in order to address the Kaplen-Avner show and, let us not forget the non-responsive Maribeth Gnozzio of DOH Fame. Perhaps it might be interesting to conduct non-violent protests at the homes of all three. It’s been too long since protests like this have surfaced in Chappaqua, Delmar and Tannersville.

Here is the agenda for the TBISCC Council meeting  September 12.

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

Empire State Plaza, NYS Museum Meeting Room A

(Concourse level of NYS Museum)

Monday, September 12, 2011

10:30 AM – 4:00 PM

AGENDA

10:30am – 10:45am Welcome

Review and Approval of Minutes from June 20, 2011 Meeting

10:45am – 11:45am Kristen Dams-O’Connor, Ph.D., Screening for Concussion in Collegiate Athletes, Brain Injury Research Center, Mt. Sinai Medical Center

11:45am – 12:45pm Brian Greenwald, M.D., Medical Director, Brain Injury Rehabilitation Program, Mt. Sinai Medical Center

12:45pm – 1:15pm LUNCH (members on their own)

1:15pm – 2:15pm Todd Nelson, Concussion Management Information/Guidelines, New York State Public High School Athletic Association

2:15pm – 3:15pm Discussion of Concussion Management and Awareness Act  (S. 3953-B)

3:15pm – 3:45pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:45pm – 4:00pm Public Comment/Summary/Next Steps/Adjournment