Monthly Archives: April 2012

Some thoughts on NY State’s TBI Council

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For several reasons, immoveable objects all, I will not be able to attend the meeting this Friday of the New York State Traumatic Brain Injury Services Coordinating Council (TBISCC). Given this, I thought I might offer a few thoughts about the council (the council agenda will be presented at the end of this missive).

There is no doubt that the TBISCC, were it blessed with healthy leadership, could play a very healthy role in the lives of New York State residents who live with brain injuries. There is certainly no harm, nor do I think anyone in the state’s Department of Health would be upset, were the council to live up to its mandate and offer healthy proposals so that the state might better support the right of those living with brain injuries to live as independently as possible.

In order for this to happen, the council must free itself of the self-absorbed rather unpleasant likes of Michael Kaplen. As an earlier piece in this blog explains, Kaplen’s term on the council expired in 2004 . This fact has not stopped Kaplen from acting as the council’s chair.  The council’s vice-chair, Judith Avner, saw her term expire in 2003, yet she too remains on the council.

Kaplen and Avner are wrong to continue in their current posts when their terms have long since expired. Council members need to step up and address the issue. This writer, as readers of this blog already know, thinks Kaplen needs to leave the world of brain injury altogether, the sooner the better. However, the council would benefit from Avner’s continued presence as a representative of the Brain Injury Association of NY State. She is their executive director. While I do not think BIANYS members ought to be on the council proper since BIANYS receives funding from the New York State Department of Health, I think it is critically important that BIANYS have a firm seat at the table as a non-voting council member, much like various state agencies do.

There are some good people on the council and, though we’ve clashed from time to time, there are some good people in the NY State DOH. This next meeting will be a litmus test for all. Will they allow Kaplen to just push on forward as if he is still the chair and say nothing? Or, will they hold him accountable, and dismiss him from the council, or, document he has been reappointed by God knows what fool, and then hold elections for the chair and vice-chair of the council?

If the council acts as if its business as usual, and Kaplen is allowed to remain at its head, then every single person in the room has brutally betrayed the very people they are pledged to serve, New York State residents who live with brain injuries and their families and friends.

 

 

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

875 Central Avenue, Albany, New York

(Main Conference Room)

Friday, April 20, 2012

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome

Introduction of New Member

Review and Approval of Minutes from

September 12, 2011 Meeting

10:45am – 12:00pm New York State Five Year TBI Action Plan

Carla Williams, Deputy Director, Division of Long Term Care, NYSDOH

12:00pm – 1:15pm LUNCH (Members on their own)

1:15pm – 2:00pm Impact of MRT proposals on TBI and NHTD waivers:

Medicaid Managed Care and Repatriation of individuals served out of NYS

Jason Helgerson, Deputy Commissioner, Office of Health Insurance Programs and NYSDOH Medicaid Director

2:00pm – 2:30pm Update on Stakeholder Committee Discussion of Coordinated Medicaid Managed Care Program for Individuals with TBI

Joseph Vollaro, PhD.

2:30pm – 3:00pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:00pm – 3:30pm Public Comment/Summary/Next Steps/Adjournment

The life I’ve imagined

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While it would be a stretch to say I am in the process of reinventing myself, I can say that after I move to my new home in the Berkshires at month’s end, a very new chapter of my life will begin.

Many of us, it seems to me, put off the life we would like to be living, if not in its entirety, at least partially. I am of the latter ilk. I have never given myself permission to write as much and as often as I would like. The phone rings, an email comes in, something is amiss on the advocacy front (Something is always amiss on that front. Life never seems to run out of examples of people, companies and or systems denying equal rights to others).

I realize now, more than ever before, that the time has come to truly write as much as I want, unplug the phone, not look at email or the damned Internet, and have at it. It is not lost on me that what I write will, when all is said and done, be what, of any value, I leave behind. And I’d like to leave something of value.

There are, at present, a few short stories underway, the completion of the memoir is, thankfully, within comfortable reach, and the shape of two books are taking form and may, in fact, be blended into one book: currently one is a missive about what it is like to live in the world with a brain injury and the other is about what can best be applied to working with people in the healthcare and other arenas. Some years ago when I was one of 16 or so people that formed the New York City Chapter of Victims for Victims, someone very close to me told me that the arena of healthcare, of human services, attracts some of the most extraordinary people and some of the most emotionally dysfunctional folks you’d ever want to meet. Very, very true.

I am looking forward to setting up my new home. Recently I donated a bunch of things to the Salvation Army: furniture, five or six bags of clothing, three or four boxes of miscellaneous items, and about 15 boxes of books. Now I’m down to a mere 45 boxes of books (this is when you smile).

Once moved, the writing becomes priority. Daily blocks of time will be set aside for that and nothing else. Then, of course, one block of time set aside each week to send the work out.

Life is too short, way too short, not to live the life you want to live. Two quotes from Henry David Thoreau say it far better than I ever could: “Go confidently in the direction of your dreams. Live the life you have imagined,”and, “Do not lose hold of your dreams or aspirations. For if you do, you may still exist but you have ceased to live.”

 

Trayvon Martin: and then there was silence

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If you stick with the facts in the Trayvon Martin tragedy, you will likely conclude, as I have, that he was executed by George Zimmerman.

Fact: In the 911 call you hear a young man screaming for help, then a gunshot, then silence. (I nearly doubled-over in gut-wrenching heartbreak and horror the first time I heard it. I’ve begged for my life at gunpoint so I know the fear, the latter being a word that does not come close to the mind-splitting marrow-melting terror one suffers when someone is pointing a gun at you. Regular readers of this blog will remember that I was held up and shot in the head at point blank range leaving the bullet lodged in my brain.)

Fact: Zimmerman had no business carrying a gun because neighborhood watch rules prohibit the carrying of weapons.

Fact: Zimmerman tells the 911 operator he is following Martin. The 911 operator says, “You don’t need to do that.” Zimmerman says, “Okay,” but follows Martin anyway.

Fact: In the 911 call Zimmerman says, “These assholes, they always get away.” This statement underscores his biased perception of Trayvon Martin.

Fact: Robert Zimmerman, George Zimmerman’s father, said,  “”I never foresaw so much hate coming from the president, the Congressional Black Caucus, the NAACP.”  This statement indicates a dislike and distrust of blacks which in turn tells us something about how George Zimmerman was raised.

Fact: There was not a molecule of hatred in the president’s statement.

Fact: When someone is shot and killed they fall silent.

Fact: When Trayvon Martin was shot, the screaming stopped.

Love for Patricio

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When I learned this week that Patricio “Pat” Figueroa Jr. had died, it felt as if the air left the day. I was gutted.  He was 63, much too young to be leaving the world in my book.

Pat was, in so many ways, an extraordinary human being. Testimony to this can be found, in part, when you pause to consider the fact that I only met him once, several years ago, and yet, here I am, thoroughly staggered by his death. Granted, we had quite a few phone conversations, I write for Independence Today, the national disability rights newspaper he published. Our conversations ranged over all kinds of areas, including our love for New York City’s Lower East Side, a place where we both lived.

So what was it about this good and decent man that caused him to mean so much to me? I don’t know that I’ll be able to answer the question completely in this essay and I’m too damned sad to try. I can tell you that one of the reasons was his pure unfettered compassion for people and, in more than one instance, for me personally. He enjoyed reading this blog and after reading one piece that talked about my struggle to keep food on the table he told me the piece moved him to tears. The man knew poor, he knew struggle.

So here’s the thing, if Pat came to mean so much to me after so little time together, I can only imagine what those who knew him far better than I are going through. I’ve met his wife Denise and daughter Melissa.  I love them both too. In fact, only those who don’t pay attention would fail to love these three truly beautiful human beings.

I have no magic words to offer those deeply wounded by Pat’s death. What I can tell them, simply because it is true, is this: even death has its impotence. My father died when I was 15. For years I believed, on a thinking-level, that he was all gone. Then, one day, it hit me, he was (and is) present in my mind and heart on a daily basis. In a very concrete real way, he is still with me every day of my life. Death did not take the all of him away from me. Nor will death take the all of Pat away from those who loved him and love him still. He is not all gone.

pat figueroa

Pat Figueroa