Monthly Archives: July 2011

The BIANYS Journey of Nope Gala

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“The Brain Injury Association of New York State is the premier support and advocacy organization for New Yorkers with brain injury and their families,” according to the letter. One would be hard pressed to find a statement less true than that.

The letter is a BIANYS fund raising letter asking everyone to donate money to assist them in their “important work” at the fourth annual Journey of Hope Gala (renamed above for accuracy’s sake) at some pricey location in New York City. BIANYS should stop with the spin and be straight about what work they do, and, equally important, what work they don’t do. Perhaps when the authors of the letter, Gala co-chairs Rosemarie diSalvo and Bradley Van Nostrand learn BIANYS is not the advocacy organization it wants everyone to think it is they’ll pause and rethink their involvement.

Perhaps too, when actresses Lorraine Bracco and Penny Marshall, both of whom, according to one website “have stocked the (gala’s) silent auction with celebrity memorabilia from their friends and several of their friends” learn they are supporting an organization that isn’t what it says it is, they’ll re-think their involvement. After all, BIANYS support for New York’s brain-injured individuals and their families is anemic at best. Three Albany-based BIANYS support groups came to an end recently because of BIANYS refusal to reimburse support group leaders for their out-of-pocket expenses and, in the Albany case, a rejection of the pleadings for help from support group members, made up of, you guessed it, the very brain-injured individuals and family members BIANYS says it cares about. 

While BIANYS claims it can’t afford to reimburse its volunteers for their expenses, lets review the cost of attending the gala, as an individual or in one of several sponsor levels which lands you extra tickets (hold onto your hat).

  • Gala Ticket $300
  • Patron Sponsor: $400 (1 ticket)
  • Friend Sponsor: $1,000 (2 tickets)
  • Leadership Sponsor: $2,500 (6 tickets)
  • Bronze Sponsor: $7,500 (8 tickets)
  • Silver Sponsor: $10,000 (10 tickets)
  • Gold Sponsor: $15,000 (20 tickets)
  • Platinum Sponsor: $25,000 (30 tickets)

I wonder how many brain-injured individuals on fixed incomes and their families will be going.

Enough said.

BIANYS & NY State DOH: Birds of a feather (my apology to the birds of the world)

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Trying to get New York’s Brain Injury Association and Department of Health to openly deal with some of the challenges faced by brain injury survivors in the state is like trying to nail Jell-O to the wall.

A case in point. Both BIANYS and DOH are tied by contract to the traumatic brain injury waiver complaint line. I can tell you from first hand experience and from hearing the experience of others from all over the state that if you file a complaint you will never learn the results, not ever.

I recently wrote to DOH Deputy Commissioner Mark Kissinger pointing out the injustice, not to mention the possible violation of due process set forth in the Constitution’s 14th amendment. He wrote back saying he would have his staff look into it and get back to me soon. Never heard another word from him, despite follow-up emails on my part.

Then I wrote to the BIANYS board president, Marie Cavallo, and executive director, Judith Avner, asking BIANYS to take a public stance citing the injustice of complainants being ignored. The request was ignored. Scary that these two are the leaders of a non-profit organization that on its website makes the following claim: “Since 1982, we have provided information, resources, programs, advocacy, and support services to brain injury survivors, family members, health care professionals, and educators.” They are absolutely right when they talk about the provision of information and resources and, to some extent, programs, but it is highly disingenuous of them to claim they are an advocacy organization because they are not.

Keep in mind, I’ve asked Avner and Cavallo, in writing, on more than one occasion, to take a public stance regarding the complaint line. They  ignored the request. I’ve asked them in writing to take a public stance regarding the DOH directive blocking TBI Waiver staff from advocating for their clients at Medicaid Fair Hearings. They ignored the request. I asked them in writing to take a stance regarding DOH’s mangling of the rent subsidy which has resulted in quite a few brain-injured individuals getting eviction notices. They ignored the request. I asked them in writing to issue some kind of public statement regarding the heartbreaking case of Francine Taishoff who had her life put in jeopardy by the DOH. They ignored the request.  And I’m a BIANYS member!

I hope the BIANYS board steps in and either straightens out or replaces both of them.

And then we have the DOH.

I sent several emails to Maribeth Gnozzio asking her to address the directive she gave last year blocking waiver staff from advocating for their clients at Medicaid Fair Hearings. Gnozzio ignored the emails. So did the DOH officials copied on them: Kissinger, Mary Ann Anglin and, of course, the DOH’s “tough guy wannabe” Carla Williams.

The pattern in both groups, at least as far as their leadership is concerned, is to do ignore anyone and everyone who holds them accountable and, God forbid, calls on them to do what they say they do in the first place.

Is the problem NY’s brain injury leadership, the DOH, or both?

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The leadership of New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council seems determined not to hold the state’s Department of Health accountable for anything.

Is it only a coincidence that the same people have led and, in some respects, still lead both groups?

For years attorneys Michael Kaplen and Judith Avner led BIANYS and now they head up the council.

Avner was Kaplen’s pick for assistant council chair even though she is still the BIANYS executive director. When the two attorneys led BIANYS, Kaplen was the board president. Moreover, Kaplen was a BIANYS board member at the same time he was the council’s chair. It is worth noting too that BIANYS relies on a sizeable grant from the DOH in order to operate, a reality that makes Avner’s post on the council high-risk for potential conflict of interest and, given his past relationship with BIANYS, Kaplen faces the same risk.

Violating NY Public Officers Law

Conflict of interest did not stop Kaplen or Avner from voting for a trust fund that would have clearly benefitted BIANYS. Never mind that during a September 16, 2010 council meeting they were warned against doing so by ex-officio council member Nick Rose. The trust fund was to benefit brain-injured individuals who did not qualify for the state’s TBI Waiver and BIANYS because, according to council minutes, “the Brain Injury Association of NYS ( was to) be contracted (with) to assist with the development”of the trust fund and, it is said, receive a financial percentage of the fund itself.

Despite the warning, Avner and Kaplen voted for the fund anyway, even though doing so appeared to put both in violation of New York’s Public Officers Law.  The council’s by-laws say council “members shall refrain from voting procedures in instances where a conflict of interest  may exist as defined by the Public Officers Law.”

DOH Getting Carte Blanche

As an earlier blog post points out that in its lifetime the council has never really offered so much as a single proposal to the DOH regarding what can be done to help brain-injured individuals in the state, proposals like these being the very reason they were formed in the first place. Similarly, throughout its years with Avner-Kaplen duo at the helm, BIANYS never publically held the DOH accountable for anything, a pattern that has not changed under the current BIANYS leadership duo of Avner and Marie Cavallo. Cavallo is the BIANYS board president. Another recent blog post outlines some of the issues BIANYS refuses to address publically even though they have been repeatedly asked to by this writer.

The fact of the matter is one would be hard pressed to find a single example of either group holding the DOH publically accountable for its actions, including its recent attempt to throw a 66-year-old woman with a brain injury off the waiver and charge her $24,000 in the process. It is worth noting too that in an article by Rick Karlin in today’s Albany Times Union regarding this injustice there is no mention of BIANYS. BIANYS had plenty of time to release a statement to the media because I told them in plenty of time and asked them in writing to take a public stance; a written request that was ignored by Avner and Cavallo, yet both will tell you with a straight face that BIANYS is an advocacy group.

Is the reluctance to hold the DOH accountable  a matter of morally bankrupt leadership in both groups, the power of the DOH, or a combination of both?

The Bottom Line

Managing life with a brain injury is a formidable enough challenge as it is. It should not be all the more formidable because groups like BIANYS, TBISCC, and the DOH reveal an across the board penchant for lip service steeped in moral bankruptcy. Something needs to be done. Maybe step one is for the leadership of all three to step down.

Federal Court Protects Disabled Senior’s Life from NYS Department of Health

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Federal District Court Judge David N. Hurd last week issued a temporary restraining order stopping the NYS Department of Health from throwing a 66-year-old disabled woman off the the TBI Waiver and ending her housing subsidy and demanding the woman pay them $24,000, all without explanation. Actions that would have likely put her life in danger by rendering her homeless.

According to documents filed in U.S. District Court Northern Region:  Francine Taishoff received a letter from the DOH in May 2011 informing her that she was no longer on the waiver as of 2008, her housing subsidy should have stopped in 2008, and she owed them $24,000 in back housing subsidy. Never mind that she’d actually been receiving waiver services when she received the May letter. Never mind that the  DOH had signed off on and approved her participation and housing subsidy over the years. The letter didn’t even bother to tell her why she was being thrown off the waiver and having her subsidy ended, nor did it tell her how she could appeal the decision.

And so, without explanation, the NYS DOH appears to have knowingly put a 66-year-old woman’s life at risk and billed her $24,000 in the process. A woman who suffered a stroke while in her twenties with a monthly income of $761 and $200 in food stamps.

It will be interesting to see if tragic events like this will make the state’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council come out and fight or, will both groups, particularly the Brain Injury Association who claims it’s an advocacy group, remain publically silent as they have in the past.

One group that did not remain silent was Legal Services of Central NY out of Syracuse. Two of their lawyers represented Ms. Taishoff: Christine S. Waters and Samuel C. Young .  Ms. Waters works along with the state’s Commission on Quality of Care, the latter being the state’s protection and advocacy agency for individuals with brain injury.

Why I Fight

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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.