Monthly Archives: November 2012

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.

Once more into the deep!

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I’ve been afraid of the water since I was a little boy. Actually, to be more precise, I’ve been afraid of the deep water since I was a little boy. I’d ask the same question when, as a family, we’d be approaching a pool, lake, river. Is it over my head? And no, I’ve not forgotten oceans.  Never mind  oceans. I know all about undertows and know they’d drag me to my doom.  Forget oceans.

My fear had nothing to do with my ability to swim. I was a fairly decent swimmer as long as I knew I could touch the bottom with my feet. The moment I couldn’t, panic set in.

My fear of the deep water has always been with me.

Looking back. Both sets of grandparents lived in New Jersey. My father’s folks lived in Ocean Grove and my mother’s lived in Rumson. Both lived near the water. In fact, my mother’s parents lived right on the water. They had a couple of boats and, hanging off the end of the dock, was a minnow trap. One of my  chores was retrieve the minnow trap every morning. One morning I fell in. I must’ve been about five or six I suppose. The water was green and I was terrified flailing and then a strong hand grabbed me and pulled me to safety. My father had saved my life. It wouldn’t be the last time, either. Although he had died long before I got shot, there is no way I would’ve got back to my feet had it not been for my father’s presence in that moment with me.

Anyway, falling in, as you might imagine, did nothing to erode my fear. My next attempt at taking on the fear occurred when we were all at a public pool. It occurred to me that if I tossed in a kick board and swam to it, and then swam back holding on to it without touching the bottom of the pool, I could work my way from the shallow end to the deep end.  This is exactly what I did. Over and over I’d toss the board into the center of the pool, swim to it, hold onto it, and swim back. I made it all the way to the deep end and then, in an act that amazed even me, I jumped off the diving board into the pool and swam like hell to the side of the pool. When I got back to where my family was they applauded. They’d been watching.

Still, my fear of the deep water persisted.

Which brings me to the present. I moved to my new home in Berkshire County, Massachusetts a few months ago. I then got a membership in the YMCA. I knew, when I did so, that I was going to give swimming another go. It is unquestionably the best all around exercise there is and there is no doubt exercise benefits all areas of life.

September fifth was my first time in the pool. I swam one lap. I got out and sat in the sauna. The sauna, as far as I’m concerned, is the pot of gold at the end of the workout rainbow. The second time I went into the pool was on the fifteenth. I swam five laps. I began to increase the number of times I swam weekly and soon made sure to be there when the pool opened at 6 a.m. It was not lost on me that the man who swam  to my left every morning is going to celebrate his 77th birthday this February. He swims 36 laps every morning, one mile to be exact. The woman who swims to my right every morning swims in the neighborhood of 15 to 20 laps. She is 86. The man who swims to her right swims a mile every morning, he’s 70. You picking up on a theme here?

Anyway, I’ve been keeping at it. I now swim a mile every time I go to the pool, which is about five times a week.

Oh, and one more thing, the fear is gone. The only way to overcome fear is to head in its direction. Sometimes, you just have to swim there.

The Soup Kitchen

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It had been years since I’d gone to a soup kitchen. It will not be years before I go again. I plan on going Monday.

I’d be lying if I said going to the soup kitchen for lunch was emotionally easy. It wasn’t.  I suppose when one goes for the first time, or, in my case,  returns after having gone years without needing the support of a soup kitchen, it’s never easy. The last time I went to a soup kitchen was in the early 1970s in New York City when I was homeless. I am not homeless now. In fact, I like my apartment. It is in an old house and the walls are thick and the rooms are comfortably sized and, not surprisingly, given who I am, there are books everywhere.

There just not always enough food and so I go to a wonderful food pantry every two weeks and, yesterday, the soup kitchen. They will be serving a Thanksgiving meal at 4:30 Thanksgiving and I plan on being there.

I’d half-suspected yesterday would have been a shattering experience for me. It wasn’t. There had to be something in the neighborhood of a hundred people there. All ages. One woman in her fifties was there with her family. She had finished her meal and was fully absorbed with reading a book while her family ate and chattered among themselves on either side of her.

The protocol is you sit at a table and these college kids serve you lunch and then desert. They call the men sir and the women mam. They were all very nice and very attentive. The food was not bad and the desert was a piece of rather tasty carrot cake. I was at a table with two men. One was a younger fellow who, while pleasant enough, was not very talkative. I asked him how the food was. He smiled and waggled his hand in the air, the universal sign for so-so. I never did learn his name.

My other tablemate was Bob. Bob is in his fifties. His cheeks are flushed and seem swollen. There is a concave area under his left chin. He’d had cancer some years back. He tells me he’s been cancer free for five years. We talked about our circumstances, our days of homelessness, the recent election, and, no matter what anyone says, we both still have loads of admiration for Lance Armstrong. Say what you will about the man, he battled back from cancer and raised millions so others might do the same. That, and like one person said, an EPO doesn’t turn a donkey into a racehorse.

Bob gave me some tips on a soup kitchen for the weekend. The one yesterday runs Monday through Friday. I left before Bob. We shook hands and said we were glad to meet each other and it was true. I left with a small container of lentil soup they’d given me to take home.

When I got home I sat on the living room rug with my back against the couch. Soon both my dogs were nestled against me. I took out the book I’ve been reading, “Herzog,” by Saul Bellow and read.

Even when life is difficult, it’s good.