Pivotal Meeting for NY State’s Brain Injury Council

So far the New York State Traumatic Brain Injury Services Coordinating Council (TBISCC) has done anything but live up to its legislative mandate: offer proposals and ideas and guidance to the state’s Department of Health, a state agency that ought to be the national role model for resisting any and all input from anyone other than itself, to improve the lives of New Yorkers with brain injury disabilities. Thus far the TBISCC and the DOH is a marriage made in some kind of bizarre, dysfunctional, self-absorbed heaven.

The council meets May 31 and if the agenda (provided below) is any indication, the first portion of the meeting will provide members of the public a close-up view of two of the primary impediments to  equal rights for New Yorkers with brain injury disabilities:  Michael Kaplen and Judith Avner. Kaplen has proven in more than one venue that he is little more than a bully and Avner, the executive director of the Brain Injury Association of NY State sank to a new low last year when she blocked people with brain injury disabilities from being on a committee formed to – wait for it – represent people with brain injury disabilities.

One wonders what Avner’s presentation on “behalf of BIANYS” will include. BIANYS staff members past and present have said disagreeing with Avner on any front results in a nasty backlash; it is made clear that Judy is not to be questioned. At any rate, given that BIANYS has remained dead silent in the face of the DOH’s behavior (one example being a DOH directive that TBI Waiver Providers cannot advocate for their clients at Medicaid Fair Hearings, a move that viciously undercuts the chances that the client living with a brain injury disability will prevail) I imagine Avner’s presentation of, well, Avner, will be a dazzling display of charm-filled lip service.

Lest you think I am overstated the problems named Avner and Kaplen, one must remember that until recently, both continued to claim leadership of the council, Kaplen as chair, Avner as vice-chair, even though  Kaplen’s term had expired in 2004, Avner’s in 2003.

The DOH has allies in Kaplen and Avner. Neither will allow the TBISCC or the BIANYS to hold the DOH responsible for the suffering it is inflicting on New Yorkers with brain injury disabilities. Allowing the likes of Maribeth Gnozzio to head up the state’s TBI Waiver makes it clear the DOH doesn’t care a whit about people with brain injury disabilities. It is only by, one would assume, the grace of God (and her husband’s agreement with the FBI) that Gnozzio did not face criminal charges back when her husband, Robert C. Janiszewski, a former County Executive of Hudson County, New Jersey, pled guilty in 2002 to taking more than $100,000 in bribes. In a 2003 interview, the late Paul Byrne, a childhood friend of Janiszewski’s who was indicted for collecting thousands of dollars in bribes for Janiszewski,  said Janiszewski gave him up to spare Gnozzio from prosecution.

The one ray of hope for those who would like to see the council get its ethical head  above water will occur after lunch when the council will decide whether Barry Dain or Kaplen will be the next council chair. If Dain is elected, there may be real hope for the council. If Kaplen is elected, members of the council will have shown their real colors, colors that put them in lockstep with the likes of Kaplen, Avner, Gnozzio, and others.

If Dain is elected, then, perhaps, the council will reject the DOH’s proposed changes in the council’s bylaws. Examination of the  proposed changes to the by-laws  reveals a blatant DOH attempt to weaken a council, already in disarray, put the council under the state’s control, and weaken the current requirement that people with brain injuries and their families be fairly represented on the council.

I can tell you that this upcoming meeting will be closely watched. If, in fact, Kaplen is re-elected and the council adopts the DOH changes to the bylaws, direct action will be required and will be forthcoming.

 

 

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

Pivotal Meeting for NY State’s Brain Injury Council

So far the New York State Traumatic Brain Injury Services Coordinating Council (TBISCC) has done anything but live up to its legislative mandate: offer proposals and ideas and guidance to the state’s Department of Health, a state agency that ought to be the national role model for resisting any and all input from anyone other than itself, to improve the lives of New Yorkers with brain injury disabilities. Thus far the TBISCC and the DOH is a marriage made in some kind of bizarre, dysfunctional, self-absorbed heaven.

The council meets May 31 and if the agenda (provided below) is any indication, the first portion of the meeting will provide members of the public a close-up view of two of the primary impediments to  equal rights for New Yorkers with brain injury disabilities:  Michael Kaplen and Judith Avner. Kaplen has proven in more than one venue that he is little more than a bully and Avner, the executive director of the Brain Injury Association of NY State sank to a new low last year when she blocked people with brain injury disabilities from being on a committee formed to – wait for it – represent people with brain injury disabilities.

One wonders what Avner’s presentation on “behalf of BIANYS” will include. BIANYS staff members past and present have said disagreeing with Avner on any front results in a nasty backlash; it is made clear that Judy is not to be questioned. At any rate, given that BIANYS has remained dead silent in the face of the DOH’s behavior (one example being a DOH directive that TBI Waiver Providers cannot advocate for their clients at Medicaid Fair Hearings, a move that viciously undercuts the chances that the client living with a brain injury disability will prevail) I imagine Avner’s presentation of, well, Avner, will be a dazzling display of charm-filled lip service.

Lest you think I am overstated the problems named Avner and Kaplen, one must remember that until recently, both continued to claim leadership of the council, Kaplen as chair, Avner as vice-chair, even though  Kaplen’s term had expired in 2004, Avner’s in 2003.

The DOH has allies in Kaplen and Avner. Neither will allow the TBISCC or the BIANYS to hold the DOH responsible for the suffering it is inflicting on New Yorkers with brain injury disabilities. Allowing the likes of Maribeth Gnozzio to head up the state’s TBI Waiver makes it clear the DOH doesn’t care a whit about people with brain injury disabilities. It is only by, one would assume, the grace of God (and her husband’s agreement with the FBI) that Gnozzio did not face criminal charges back when her husband, Robert C. Janiszewski, a former County Executive of Hudson County, New Jersey, pled guilty in 2002 to taking more than $100,000 in bribes. In a 2003 interview, the late Paul Byrne, a childhood friend of Janiszewski’s who was indicted for collecting thousands of dollars in bribes for Janiszewski,  said Janiszewski gave him up to spare Gnozzio from prosecution.

The one ray of hope for those who would like to see the council get its ethical head  above water will occur after lunch when the council will decide whether Barry Dain or Kaplen will be the next council chair. If Dain is elected, there may be real hope for the council. If Kaplen is elected, members of the council will have shown their real colors, colors that put them in lockstep with the likes of Kaplen, Avner, Gnozzio, and others.

If Dain is elected, then, perhaps, the council will reject the DOH’s proposed changes in the council’s bylaws. Examination of the  proposed changes to the by-laws  reveals a blatant DOH attempt to weaken a council, already in disarray, put the council under the state’s control, and weaken the current requirement that people with brain injuries and their families be fairly represented on the council.

I can tell you that this upcoming meeting will be closely watched. If, in fact, Kaplen is re-elected and the council adopts the DOH changes to the bylaws, direct action will be required and will be forthcoming.

 

 

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

Equal rights and the wounding of others

I take no pleasure in wounding others. None. However, no equal rights advocate gets to choose the oppressors. They are who they are. They are accountable and must be held accountable.

You can’t play favorites as an advocate. Silence in the face of oppression is never an option. Silence empowers the oppressor. Silence in the face of oppression is not in my repertoire. It never has been.

As an advocate you will inevitably wound others along the way.  But if, for example, someone denies people with disabilities a seat at the table, I am going to say so.  If a company providing services to people with disabilities  in the community  engages in community-based warehousing, I am going to say so. If a non-profit organization designed to help others offers little more than lip service, I am going to say so. If leaders from any walk of life are  are among the oppressors, I am going to say so. It’s what advocates do.

Knowing people have been wounded by my advocacy is not pleasant. There are, however, reasons I will not stop. At the top of the list, those being oppressed suffer the deepest wounds of all. And then there’s this. Knowing that oppressors have a found a way to live with themselves as oppressors has made it much easier to live with myself as an advocate.

Those who have been wounded by my advocacy should take a moment to reflect. Perhaps they will realize their wounds are self-inflicted. Those that have complained about me remind me of  someone complaining to a friend about getting a speeding ticket.  Complainer: “That S.O.B. cop gave me a speeding ticket, can you believe it?” Friend: “How fast were you going?” Complainer: “Around 70.” Friend: “What was the speed limit?” Complainer: “Forty-five.”

Sunshine is the best disinfectant and my task as an advocate is to bring things that impede or deny equal rights into the light of day.  My suggestion? Don’t speed.

Why I Fight

Someone asked me recently what led me to become an advocate for equal rights. Good question.

There are some rather obvious answers. I was raised in a civil rights family. Our minister marched with Dr. Martin Luther King Jr. and both my mother and father were active in taking on things like racism, anti-Semitism, homophobia, sexism when they  crossed their paths.

Also, I’ve been lucky in a very real way. When I was a boy I was a ballet dancer. In that arena I met and knew and was friends with quite a few men who were gay. As a result I discovered there is no difference between straight men and gay men other than their sexual orientation. Then, a series of events landed me in reform school weeks after I turned 16. There were, as I recall, about 350 boys of which less than 10 were white. There I learned what it felt like to be a minority. I also learned that those who are black or Hispanic are no different than anyone else.

After I was released from reform school events propelled me into nearly three years of homelessness. During this experience I learned that if you are poor or homeless you are seen and treated as if you are less than human. But there too, there on the streets (we called it on the streets then, not homeless) I met men and women who were the same as all the other people I’d met in life.

For a time I was in a relationship with a remarkable woman who was Jewish. I was able to take part in Passover with her family and we became close  and through them, was given a deeply special close look at what her family, and other Jewish families have been through and endured for centuries.

And then, since the mid-nineties, I’ve worked with people with brain injuries like myself and other disabilities and seen and experienced the kind of brutal heartlessness and bigotry inflicted on this segment of our population.

The point is, we really are the same and we really are equal which means we all deserve equal rights.

But there is something else that must be included in the answer to the question of why I fight for equal rights: I love life. On more than one occasion mine has almost been ended: when I was shot in the head in 1984, when, in 1974, I was held at gunpoint for nearly three hours before escaping, and then again, in 1985, when, just months after being shot, I was held-up at gunpoint. Moreover, when I was homeless I  received medical treatment two times when suffering with hunger pains. And then, of course, I’ve lost three family members to suicide.

So, all this adds up to a deep love for and appreciation for life itself. And when I see forces that openly seek to deny people their right to a life of freedom and equality I’ve fought them and will continue to fight them. If I don’t, I am not only betraying my father and mother, I am betraying all those throughout my life who, because of their presence in my life, taught me we are all the same. And then there is this; if I don’t fight back, I betray life itself -  and I’ve fought to hard to keep mine to do that.

Silence is not an option

If you are going to truly be an advocate for equal rights there are a few things I’d like to share with you.

First, there will be times when you will be wildly unpopular. People in positions of power and those whose advocacy efforts are primarily a form of self-serving lip service will not like it when you bring their realities into the light. But, if your commitment to equal rights is sure and heartfelt, bringing their realities into the light is a must.

Second, there will be times when the facts, as you honestly understand them, will bring you to places and circumstances you wish they didn’t. Nevertheless, these are places you must go if your allegiance is to the equal rights of each and every individual. Sometimes the facts will lead you to places where you will discover people you may like are, in fact, part of the very process that is impeding or outright denying equal rights. Still you must proceed and bring the truth into the light.

Third, at times you will pay a price. Some advocates have lost their lives. Others have lost jobs, financial stability, relationships, and much more.

Fourth, find ways to replenish your spirit, your body and your mind. For me it’s nature, conversations with those very close to me, thinking about and reading the words of people like Dr. Martin Luther King Jr., Nelson Mandela, Father Mychal Judge, Gandhi, Shirley Chisholm, Soujourner Truth, Frederick Douglass, Lincoln, Teddy Roosevelt and others of similar ilk. And then, of course, the people whose rights you are fighting, in my case primarily individuals with brain injuries. My life is all better and then some for knowing as many as I do. As remarkable and resilient and courageous a group of human beings as one can imagine. And then, lastly, for me, reading books!

No matter what you do to keep your spirits up, there will be times you’ll want to give up. There will be times the fear and heartbreak will be so bad you’ll want to curl up into a ball and vanish into the earth. Please don’t give up. For if you give up, you hand those who deny equality a victory because giving up means you’ve surrendered your humanity.

While I will not get into specifics at the moment, I am beginning to realize I may need to  bring certain things into the open that may bruise people I like and, perhaps, in some instances, end friendships or acquaintances. Then again, perhaps some of these individuals will look into their hearts and discover that they too will put equal rights ahead of their honest, but perhaps misguided allegiance, to governmental or private agencies as well as for-profit and non-profit companies.

We’ll see. Being an advocate can be an unsettling, upsetting, heartbreaking, and scary experience. But, the experience of remaining silent in the face of people be denied their rights would be immeasurably worse.

Now, if you’ll permit me, I’m going to go read. I wish you the best.