Tag Archives: tbiscc

NY State’s Brain Injury Council & Association: the tip of the iceberg?

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The early stages of a  Kahrmann Advocacy Coalition investigation into the make up of brain injury associations across the country is finding there is no shortage of personal injury attorneys on board of directors.  The investigation is also beginning to reveal that few (if any) of these attorneys received any formal training in the brain.  As many know, people with disabilities and people with brain injury disabilities are often seen (and treated) as if they are little more than potential revenue streams.

Two perfect examples of dysfunction in the world of brain injury disability will be on display tomorrow in Albany: he New York State Traumatic Brain Injury Services Coordinating Council (TBISCC) and the leadership of the state’s brain injury association; both ineffective groups when it comes to advocacy and, given what is going on around the country, they may well be the tip of the dysfunction iceberg when it comes to brain injury disability.  The TBISCC will meet in Albany in part to elect a new council chair. However, a major part of the day’s opening agenda is a presentation to the council by Judith Avner, an attorney who is the executive director of the Brain Injury Association of NY State, and someone who several sources say recently blocked people with brain injuries from being on a committee that represented people with brain injuries (fiction writers would he hard pressed to come up with story lines this dysfunctional).  So, council members and members of the public will get to watch Ms. Avner represent BIANYS to a council head by Michael Kaplen, a personal injury lawyer who continues to claim the chair position on the  council even though his term expired years ago.  Not to be outdone on the gall front, Ms. Avner resigned from the council at their last meeting; an organizational feat that would make a magician proud since her term had already expired nearly 10 years ago. Imagine that, resigning from a position you no longer have. Voila!

Despite the fact some of the council members genuinely care about the council’s mission (to provide goals, ideas and strategies to the DOH to improve the life of New Yorkers with brain injury disabilities), the council, to date, has failed miserably. There are several reasons for this. The two council chairs to date, first, Charles Wolf, then, Michael Kaplen, are about as self-serving as it gets. At one point Wolf nominated himself for the position of chair and Kaplen, well…Kaplen’s term as chair expired some years ago but there he sits, claiming the mantel. Another reason for the councils failure is the state’s Department of Health, about as insular and arrogant a state agency that’s ever “walked” the planet.

And then, of course, there have been members of the Brain Injury Association of NY State on the council which is a glaring conflict of interest given the fact the DOH provides the association with a sizeable grant.

There is some hope for the council. If council members elect Barry Dain as chair, the council has a chance of moving in the right direction. If it re-elects Kaplen, nothing will change, and New Yorkers with brain injury disabilities, their families, and the healthcare providers that really do care will be the ones that suffer. The meeting tomorrow is open to the public. Following is the agenda:

 

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

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

Backstabbing Cuomo & New Yorkers with disabilities

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Examination of proposed changes to the by-laws for a New York State brain injury council reveals a state agency’s 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.

The council was signed into being by former New York State Governor Mario Cuomo and the proposed changes are being proposed by current governor Andrew Cuomo’s department of health. It is reasonable to believe, given the current governor’s admirable efforts on behalf of people with disabilities to date,  that the DOH is engaging in practices that violate all Governor Cuomo stands for and all his father stood for.

Now, let’s take a look at these proposed changes.  In one glaring instance of undermining the council, the state DOH proposes removing the following clause from the bylaws in its entirety: “Assuring the appropriate consumer representation of persons with brain injuries and their families is represented in the activities of the Council.”  Were this to be removed the bylaws would in no instance include a requirement that there be ample and fair representation of people with brain injuries and their families on the council. One has to question the council’s willingness to oppose this, especially since the person still claiming to be the vice-chair, even though her term on the council ended more than nine years ago, Judith Avner, the Brain Injury Association of NY State’s executive director, is the very person who blocked persons with brain injury from being on a now defunct committee that was seeking to represent persons with brain injury.

Proposed changes on pages 3 and 4 of the bylaws would, if adopted, allow a  member of a state agency to be the vice-chair of the council (something the current bylaws appropriately blocks because the council is designed to be an independent entity) and the bylaws put the vice-chair in charge of the executive committee. This would allow the state to essentially take over the council, something that must be fought and resisted at all costs.  These proposed changes weaken the requirement for council members attendance (thus weakening the council) by allowing council members to miss two meetings over a period of two years without risking their place on the council rather than two meetings in one year as the current bylaws requires. The council is required to meet a minimum of three times a year,  in case you think the current meeting requirement for council members is too strict.

And then, the DOH proposes a weakening of council documentation. Current bylaws require that a written record of the meeting be mailed out to council members “within 30 days of a meeting.” DOH wants that requirement replaced with “as soon as practicable.”

As a July 5, 2011 post in this blog accurately observed, this council, called the Traumatic Brain Injury Services Coordinating Council, has never done its job as designed by the state legislature: “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is 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.”” As this blog previously reported , “more than 10 years of TBISCC meeting minutes tell us the council” has “failed to come up with any real comprehensive proposals for the DOH”at all. Not a one.

History tells us this is just fine with the DOH. Over the years the DOH has proven resistant to any kind of real inclusiveness and input. On page 6 of the proposed changes, the DOH wants the word expert removed in a sentence that currently permits the council  (italics mine) “to provide technical and expert assistance to the Council…” Given the DOH’s resistance to input, one can only conclude the ridding themselves of having to deal with real experts makes it even easier for them to reject input.

The DOH has a history of being unfriendly to New Yorkers when it comes to brain injury. Before the TBISCC’s meeting last December, the DOH’s Cheryl Veith (who later said she was directed to do so by her superiors yet refused to identify said superiors) sent out an email that included this:

Executive Law 166
The Department of Health is required, pursuant to Executive Law § 166, to keep a record of those who appear before it.   All attending the meeting need to complete the attached form.  Below is the form that will need to be completed upon your arrival at the TBISCC meeting so it will save time if you complete it before you arrive. Please print the completed form and bring to the meeting.

Several problems with this: The form would require anyone attending to share the personal address and phone number. Second, the law doesn’t apply for two reasons. First, those in attendance are not appearing before the DOH, they are attending a meeting of the TBISCC which is an independent body. Second, the form is meant for lobbyists, not for members of the public who should not and are not required to hand over the personal information at public meetings.  And then, there is this: the TBISCC was perfectly aware of what the DOH was up to, and they said nothing.

This writer contacted Robert Freeman, head of the NY State Committee on Open Government, who confirmed that Executive Law 166 did not apply. Freeman called Deputy DOH Commissioner Mark Kissinger who agreed the law did not apply. Nevertheless, when this writer and others showed up for the meeting, there Veith was, trying to insist members of the public fill out the form.

The DOH and council’s penchant for stiff arming the public  is also revealed by the fact there is a TBISCC meeting this Wednesday, January 23, and still the council and DOH have not released the agenda. The meeting will run from 10:30am to 3:30pm in Meeting Room A of the New York State Museum in Albany.

There are a few bylaw revisions proposed by the DOH that do make sense. Limited the chair’s term to one year rather than two, and having elections by written ballot rather than voice vote. I would also suggest a term-limit clause permitting any chair and or vice-chair to serve no more than two consecutive terms, thus freeing the council from being under the grip of the rather dictatorial likes of former chair Charles Wolf and Michael Kaplen. The latter still claims he is the council’s chair even though his term as chair expired years ago.

Lastly, for now, there is this. Several council members are directly linked to BIANYS and BIANYS gets a sizeable annual grant from the DOH. Is it any wonder that the council has a documented history of not providing the DOH with anything mandated under the above reference Public Health Law? Is it any wonder that the council avoids holding the DOH accountable for some of its destructive behavior towards those with brain injuries who find themselves in the state’s TBI Waiver?

The problems at set forth here go all the way to the top of the DOH. This writer has sent several emails directly to DOH Commissioner Dr. Nirav Shah (and called his office several times) outlining the council’s problems. He has never responded. Never mind that the Kahrmann Advocacy Coalition has more members with brain injuries than the BIANYS has had in its entire history.

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.

NY State Brain Injury Council in complete disarray

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At first glance, the agenda for the December 10 meeting of the New York State Traumatic Brain Injury Services Coordinating Council  seems perfectly reasonable, unless, of course, you think the TBISCC should be abiding by its own by-laws and by the mandate it was given when it was  formed in 1994 by an act of the New York State Legislature.

A July 5, 2011 post in this blog accurately observes that “it doesn’t much matter (to the council) that “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is 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.”” After all, as this blog previously reported , “more than 10 years of TBISCC meeting minutes tell us the council” has “failed to come up with any real comprehensive proposals for the DOH”at all.

Ignoring its own by-laws

Apparently ignoring the  council’s own by-laws doesn’t seem to matter either. It certainly doesn’t matter to attorneys Michael Kaplen and Judith Avner whose two-year terms as council chair and vice-chair expired long ago. The term lengths are clearly outlined in the by-laws.

To underscore the glaring disregard for the by-laws and everything the council stands for, both Kaplen’s and Avner’s terms as council members had expired eight and nine years ago respectively: Avner’s on Aug. 9, 2003, Kaplen’s on Feb. 12, 2004 (Kaplen managed recently to get himself reappointed although his current term ends in February 2013). The expiration of their terms didn’t stop either one of them from taking part in council meetings or laying claim to being the council’s leaders. It also didn’t inspire council members to stand up and say something. The fact the state’s department of health has, to date, done nothing about this, may  reflect a desire on their part part to keep the council as ineffective as possible. It is somewhat troubling to note that a DOH deputy commissioner is scheduled to report to the council on December 10, a move that can be seen as DOH support for keeping the council dysfunctional and ineffective.

To make matters worse, a recent document released by the state’s department of health, says Ms. Avner’s term on the council remains expired. One wonders if the number of council meeting cancellations this year has not, to some degree, been to give the likes of Kaplen and Avner time to get themselves reappointed. If so, it would mean that the needs of New Yorkers with brain injuries were once again being set aside for personal gain. If it is announced at the December 10 meeting that Avner has been reappointed, the preceding speculation may well have its roots in fact.

Disrespecting  NY State Legislature – among others

The fact Kaplen and Avner have been allowed to remain at the helm by their fellow council members and by the state’s department of health reflects an astonishing lack of accountability, glaring disrespect for New Yorkers with brain injuries, and, not at all incidentally, disrespect for the very state legislature that should be commended for forming the council in the first place.

Yet, a read of the agenda for the upcoming meeting reflects business as usual. Kaplen and Avner at the helm, surrounded by council members who have, so far, remained silent. They need to stop being silent and speak up. There was a time when this writer, who has long believed Kaplen simply needs to get out and then keep on going, believed Avner needed to remain on board. This has changed. Avner, who is and should not be the executive director of the Brain Injury Association of NY State (BIANYS),  needs to get out as well. Let’s not forget that, as reported last year in this blog, she voted on a measure that had a direct bearing on the BIANYS despite being warned during the meeting that her vote was a violation of the state’s public officer’s law and thus the council’s by-laws.

Knowledge gone to waste

And then there is this observation. Over the years, quite a few groups have presented valuable information to the council, including, but not limited to, OVR (Office of Vocational Rehabilitation), NYS Education Department, Office of Mental Heal, NYS Crime Victims Board, Office of Alcohol and Substance Abuse Services, OMRDD (now OPWDD), Office of Advocates for People with Disabilities, Mt. Sinai School of Medicine, NYS Division of Veterans Affairs, Unity House, NYS Coalition on Domestic Violence, and so on.  But then, nothing happens with the information! It is not shared with New Yorkers with brain injuries, it is not shared with providers, nothing. So what is the point? To inflate the egos of those who sit at the head of the table like pseudo-royalty?

Time to stand up

To those council members who truly do care, let me say that you need to stand up to anyone and anything that gets in the way of what the council was designed to be and do in the first place. I know facing Kaplen’s bully tactics and Avner’s talent for saccharin lip-service is not easy. It can even be scary for some, and I get that. But consider this, consider what those you are there to help have faced. Here is a glimpse of just few.

  • A young man in Cortland who suffered his brain injury in a car accident and, in that accident, witnessed two of his friends being decapitated.
  • A young woman so savagely beaten and raped she was left for dead.
  • A woman who went into labor joyous at the thought she was going to have a child and suffered a stroke.
  • A veteran in his early 20s who sustained his brain injury from an explosive device in Iraq.
  • A woman who, while in her early twenties, suffered a car accident and remained in a coma for more than six months. When she came out of the coma she learned her brother, who had been sitting next to her in the car had died.
  • A woman who was a teacher and on one lovely winter’s evening went for a walk with her husband. They were pulling their two children behind them on a Flexible Flyer sled. Suddenly a snowmobile driven by a  man who was drunk hit all of them. The husband escaped injury. The woman suffered a brain injury and deals daily with the challenges of being a quadriplegic. Worst of all, she will tell you, is dealing with the wrenching fact that both her children died in the accident.

So, yes, I know it can be scary. But stand up. Stand up for these folks, for yourselves, for the right every person with a brain injury (or any disability) has to be treated as equals, and to be afforded every conceivable opportunity to regain their maximum level of independence, which includes – always includes –  their right to respect and dignity.

Share your concerns

Concerned citizens can voice their concerns to NY Governor Andrew Cuomo here and, just as important, to the Commission on Quality of Care and Advocacy for Persons with Disabilities  here.