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.

NYS TBI Council Going to Waste

For more than a decade now the NYS Traumatic Brain Injury Services Coordinating Council has offered virtually no proposals to the state’s Department of Health and the DOH has not asked for any.  Apparently it doesn’t much matter 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.”

Instead, more than 10 years of TBISCC meeting minutes tell us the council – under the leadership of first Charlie Wolf and now Michael Kaplen – has had a wide range of important presenters but failed to come with any real comprehensive proposals for the DOH. The list of presenters is indeed impressive: VESID, 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, the Brain Injury Association of NYS and more. But to what end? What is the point?

All this and more makes one wonder why the council has never come up with any comprehensive proposals that include “long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” Is the DOH wielding undue influence behind the scenes? Are there conflict of interest at play that are problematic? Are some members of the council (not all I assure you) there for rather self-serving reasons. Question: Who nominated Charlie Wolf for council chair? Answer: Charlie Wolf!

The TBISCC has an important voice and an important role to fill. It can have and should have an influential presence.

There have been moments, albeit rare ones, when the council has shown signs of life and self-awareness.  Minutes from the September 10, 2002  reveal  “(t)here was strong concern voiced by many members that the Council has lost its charge and needs to re-think what its purpose is.”  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.”

Then, like now, the DOH is inexcusably insular and, frankly, arrogant. Here is a state agency charged with overseeing a waiver for people with brain injuries yet they have no required brain injury training for any of their employees, contract or otherwise, and clearly no intention of availing themselves of the huge swaths of knowledge about the subject that has always been available to them with the TBISCC, the Brain Injury Association of NY State (which provides superb training on brain injury), the Alliance of TBI Waiver Providers and more.

My suggestion to the council is to prepare and make some comprehensive proposals, publicize the proposals you make and publicize the response you get from the DOH. Start with a Facebook page, and then expand.

Goodbye My Sponsor

Goodbye my sponsor I love you.

Only moments after finishing a speech today I learn you’ve died. For a moment air leaves my world and then, standing outside minutes later in the sun, I hear you saying, “Remember, Peter, the moment you’re in is the only place you have to be.” And the air returns and I thank the sun for being there.

Goodbye my sponsor I love you.

In our first days together you over and over again say keep your head where your feet are, stay in the moment. Over our first coffee together you tell me you want me to stop biting my nails. I am perplexed. Why? Because you’ll have to stay in the moment you’re in.

Goodbye my sponsor I love you.

Once just before a meeting I tell you I didn’t feel like coming. You smiled and said, “There are only two times you should come to a meeting, when you want to and when you don’t.” Being a typical alcoholic I say, “What if I’m not sure,”  and you smile at me with so much love and say, “I stand corrected, there are three times."

Goodbye my sponsor I love you.

Walking together to the parking lot after a meeting one evening you touch my arm and say, “Look up, Peter. Look over there.” And you are pointing at a white church steeple and the beautiful blue-black sky beyond sprinkled with stars. “Don’t miss it,” you say, and I didn’t.

Goodbye my sponsor I love you.

You teach me to look for my unhealthy patterns. You may not get free of them right away, but when you begin to notice them you’re breaking their grip. And remember, alcoholism is like a sleeping dragon, every once in awhile it will open it’s eyes to see if you’re paying attention to your sobriety.

Goodbye my sponsor I love you.

I am doing my best one day at a time and I am alive today so much because of you and yes I am present and accounted for in this moment and you are here with me.

Goodbye my sponsor I love you.

 

for E. L.