Category Archives: tbiscc

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.

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?

 

 

Working against Hypocrisy in NY State

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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.

Proposal for NY State Brain Injury Waiver: Elephant #2: NYS Traumatic Brain Injury Services Coordinating Council: the Challenge & Remedy

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The Challenge

Formed in 1994 by an act of the New York State Legislature, The 19-member NY State Traumatic Brain Injury Services Coordinating Council is “charged with recommending to the (NY State) department (of health) long-range objectives, goals and priorities”  for New Yorkers with brain injuries. The record shows it has done this. This is not to say there have not and are not council members who, if afforded the  chance to work with effective leadership, who care.

The problem with the TBISCC rests on two primary fronts. It’s leadership and the ongoing presence of blatant conflict of interest linked to some council members.

First, the leadership. Over its history the council has had two chairs: Charles Wolf, the former head of the Long Island Head Injury Association who left that post in disgrace, and, Michael Kaplen, an attorney whose practice focuses on landing people with brain injuries as clients and is the past president of the Brain Injury Association of NY State. Kaplen was a BIANYS board member during some of his time time as the council’s chair. Judith Avner, the executive director BIANYS has been co-chair for each, and therein lies the tip of the conflict of interest iceberg. BIANYS gets a large grant from the DOH.

A review of council minutes from its inception 18 years ago reveals not one single proposal designed to assist the department of health in developing and improving the state’s Traumatic Brain Injury (TBI) Waiver, established in 1995. Moreover, the fact that anyone from BIANYS or anyone who works for a waiver provider is on the council as a voting member wouldn’t pass the sniff test of even the most poorly written code of ethics. Moreover the council’s by-laws say: “Members shall refrain from participating in voting procedures where a potential conflict of interest may exist as defined under the Public Officers Law.” 

This has not stopped council members from blatantly engaging from conflict of interest even when they were warned not to. According to council’s own minutes for a September 16, 2010 council meeting  ex-officio council member Nick Rose warned Ms. Avner not to violate the Public Officers Law by voting on a proposed trust fund that would be raised from a surcharge on state vehicle registrations because “the Brain Injury Association of NYS ( was to) be contracted (with) to assist with the development”of the trust fund and, it is said, receive a financial percentage of the fund itself. Despite the warning, Mr. Avner and voted for the fund anyway, even though doing was clearly a conflict of interest according to the New York’s Public Officers Law.

BIANYS has a history of hands-off when it comes to the DOH. As a BIANYS member and a former board member it has been made clear to BIANYS staff, by Ms. Avner, that they are not to tamper with DOH related issues, i.e., the waiver. Is just a coincidence that the council offered to constructive proposal to the DOH regarding the waiver?

Left unaddressed,  blatant conflict of interest or the perception of conflict interest undermines the ability of this or any council to do the work it is called upon to do.

The fact BIANYS has voting members on the TBISCC is particularly disturbing. I doubt it is a coincidence that both groups, BIANYS and the TBISCC, were stone silent when New Yorkers with brain injuries were and still are going through some tough times. Neither group said anything when the DOH decided waiver providers could not support waiver participants at Medicaid Fair Hearings. Neither made an iota of effort to make sure waiver participants were informed of the results of complaints they filed. It was only last year that the DOH, to its credit, changed this policy. The point is, BIANYS members have had a role in the TBISCC and, more specifically, the TBISCC’s leadership virtually from the council’s beginning. As noted earlier, Ms. Avner was co-chair under both council chairs and Mr. Kaplen is past BIANYS president.

Does anyone with any degree of common sense in their possession think it is merely a coincidence that neither BIANYS or council says word one to the DOH about the waiver?

It is also worth noting that, until this blog exposed it, Ms. Avner’s and Mr. Kaplen’s terms on the council had expired eight and seven years ago respectfully. Apparently, Mr. Kaplen has been reappointed by a, one would hope, misinformed Speaker of the New York State Assembly, Sheldon Silver. I am not sure about Ms. Avner’s status. I am sure there terms as chair and co-chair ended a long time ago.

The bottom line is this. The TBISCC can be a positive and constructive force in the lives of New Yorkers with brain injuries. Mr. Kaplen should remove himself from the council. Barring that, he should certainly refrain from seeking the chair or co-chair position. Mr. Kaplen’s history strongly indicates that unless he can be the center of attention, his participation in council activities will rapidly decline. And,  his behavior reflects an individual who has no business being on a council like this. His disdain for individuals with brain injuries and, on more than one occasion, his colleagues on the council ought to send him packing.  I remember attending a council meeting some time ago when Mr. Kaplen responded to a series of utterly reasonable questions posed to him by Mary Ann Anglin, the DOH Director of the Division of Home & Community Based Care Services, with a level of nasty defensiveness that ought to have embarrassed him and, it must be said, did nothing to ruffle or intimidate Ms. Anglin.

In must be said too that under Mr. Kaplen’s leadership, council committees have all but ceased to exist, and executive sessions, rarely, if ever, happen. Mr. Kaplen’s rather self-absorbed dictatorial streak has run both off the road, and, as co-chair, Ms. Avner has either supported this or been ineffective in doing anything about it.

Kaplen should go. I’ve heard first hand reports of how he has yelled at people in person and on the phone, sometimes leaving them in tears, and, as this blog reported, I was present at a BIANYS board meeting when he threatened everyone to embarrass everyone at the table.

However, Ms. Avner and the presence of BIANYS, whose presence on the council needs tweaking,  should not be sent packing.

 

The Remedy

The relationship between the TBISCC and the DOH does not have to be adversarial. The TBISCC is there to recommend “to the (NY State) department (of health) long-range objectives, goals and priorities” for New Yorkers with brain injuries. Then do so!

The DOH has plenty on its plate as it is. One would think it would appreciate a sincere effort by the council to develop and propose objectives, goals and priorities. Everyone with any semblance of knowledge about the state’s TBI Waiver has known for years the lack of training in the brain is a real problem, yet the TBISCC has done nothing? Not a single idea presented? Waiver providers throughout the state have made it clear – and made it clear to the TBISCC – that the requirements for billing for services and other rules are not uniform throughout the state. There is one set of rules in one region, another set of rules in another. The council has offered nothing.

The problems with the  council are not because it is absent members – voting and non-voting – who care. It is, in my view, because the only two council chairs, Messrs.’ Kaplen and Wolf were all about Messrs.’ Kaplen and Wolf, and because of the blatant areas of conflict of interest just described.

Several things must happen in order for the TBISCC to be effective. If they do, the TBISCC can be a truly healthy influence on the lives of New Yorkers with brain injuries and a well-deserved support for the state’s DOH.

1) All areas of conflict of interest must be immediately addressed and remedied. No member of BIANYS and no one working for a TBI Waiver Program should be voting members of the council. However, both BIANYS and the providers, represented, for example, by the Providers Alliance and other such groups, should, like various state agencies, OASAS (Office of Alcohol and Substance Abuse Services) and the CQC (Commission on the Quality of Care for People with Disabilities) to name two, should have a seat at the table as non-voting members. Advocacy groups should be at the table as well. All have important and relevant knowledge to share.

2) Even if only symbolic in nature, the council should vote to uphold its own by-laws.

3) The council would be well-served to consider itself a working committee and discuss matters at hand during their meetings rather than have each meeting as a platform for presentation from outside groups who are not relevant to what is going on with, for example, the TBI Waiver.

4) The council would be wise to begin its own blog – free of cost at blogger.com – and use that format to announce meetings, publish proposals, and report on the response to those proposals.

5) The council would be wise to invite neuropsychologists and neurologists and physiatrists, not to mention people with brain injuries and their friends and families,  to get there input so council proposals would be better informed.

6) Last, and not least, and perhaps most obvious, the council is lacking in members who have brain injuries and family members who have people in their families with brain injuries.

 

Please distribute to all interested parties

 

Next: Elephant #3 Lack of effective oversight of  TBI Waiver