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

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

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.

NY State Brain Injury Council in complete disarray

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.

Anger, compassion, love, advocacy & BIANYS

I am always surprised when I hear there are or may be people who are scared of me or perceive me as being a walking bundle of anger when it comes to my advocacy. Our view of ourselves never matches the way others see us and so we are fortunate to have friends and loved ones who are honest with us.

There are some who mistakenly believe I have some personal anger and dislike for people like Judith Avner and Marie Cavallo, executive director and president of the Brain Injury Association of New York State. The fact of the matter is I love them both very much and if word reached me tomorrow that life had wounded either of them in any way I would be there for them in a  heartbeat. The fact we have  some significant differences on other fronts in no way diminishes my love for each of them.

There is a fine line between holding people and organizations accountable as opposed to lashing into them with what comes across as personal anger;  and I am not about to pretend or claim that I’ve walked that line perfectly. I do know that my responsibility, a chosen responsibility, is to be honest with the world around me, which means being honest about what I know to be my flaws. I am not perfect nor will I ever be. I am deeply honest and deeply compassionate and I am deeply committed, right to the marrow of my very soul, to equal rights for all people – all people.

When it comes to equal rights, whether they be for people with brain injuries, blacks, Latinos, Jews, gays and lesbians, Asians, Muslims and so forth, it is not about me, and I can’t make my choices or write pieces here in this blog based on what I find emotionally comfortable or pleasing. On a deeply personal level I hate holding people I love like Judy and Marie publically accountable for things; my heart hurts over my current estrangement from BIANYS. I have had a relationship with them for many years.

BIANYS does certain things magnificently. They are the best educational  and information resource on brain injury in the state (It blows my mind that the New York State Department of Health doesn’t take advantage of BIANYS trainings for its staff who are involved with brain injury).  BIANYS has a grant from OPWDD (Office for People with Developmental Disabilities) that allows them to employ a group of people who are able to advocate for brain-injured New Yorkers if they received their injuries before the age of 18. The BIANYS staff who do this work are superb. However, BIANYS does  not have the staff and, in my view, because they do not want to risk losing a grant from the New York State Department of Health, will not publically hold the DOH accountable for some of its ongoing horrendous behavior when it comes to the TBI Waiver, and, as a result, does not publically advocate for people on the TBI Waiver, people  who sustained their injuries over the age of 18 and under the age of 64. Therein lies our differences; you can’t claim the mantel of leading advocacy agency for brain-injured New Yorkers in the State and remain silent when it comes to DOH behavior.

Now, about my anger, and yes, it is there, not as much as you might think but there are times, yes, I am angry. It is true that behind most anger is heartbreak, sadness. And it breaks my heart, deeply saddens me when I see brain-injured New Yorkers being treated by the DOH and others as if they are less than human, and, in some ways, as if they are disposable. And so I can’t remain silent, nor will I. All I ask is that people and organizations actually do what they say they do. No more, no less.

But let me say again; Judy and Marie are not my enemies, I do not dislike either of them. As I said, I love them both, very much. I hope as the days move forward some of the gap can be closed. We’ll see, it takes movement on both sides, one day at a time.

Kaplen & Avner hijacked NY State’s Brain Injury Council

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.