Category Archives: Brain Injury Association

Mary Ellen Pesci: a woman that mattered

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If a loving heart, kindness, an endless supply of compassion, and an enormous amount of courage were lifelines, Mary Ellen Pesci would have lived forever.  Tragically, for those of us who knew her and loved her and for those who never got the chance to know her and love her, Mary Ellen died this past Tuesday. She was 55, way too young to be leaving this world.

I was only one of many whose eyes flooded with tears at the news that this angel of a human being had died.

Like me and far too many others, Mary Ellen lived with a brain injury.  She got her injury as a result of being hit by a car. Much of her life was rooted in a tenacious devotion to others who live with brain injuries. Her message to us was simple, pure, powerful, and true: you still matter. You count. Your value has not been diminished by your brain injury.

Mary Ellen knew that one of the challenges people with brain injuries face is managing a life in which some people tend to perceive us as somehow being less than we were before, as if, because of our injuries, we don’t matter any more. Nothing could be less true and she knew it. Remarkably, and I do mean remarkably, she was able to drive this message home with patience and kindness, even when faced with  the task of addressing people who talked about and to people with brain injuries as if they were just barely human beings.

She was on the board of both the Brain Injury Association of NY State and the Citizens Advisory Committee for the Town of Haverstraw. She was a consultant for the Traumatic Brain Injury Survivor Group and a facilitator a brain injury support group at Helen Hayes Hospital. On all fronts her compassion, bravery and devotion made its mark.

Mary Ellen Pesci was a woman that mattered, and for those of us who had the privilege of knowing her, she matters still.

 

Kaplen & Avner hijacked NY State’s Brain Injury Council

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In what can only be described as a self-serving power grab and utter disrespect for their colleagues and brain-injured New Yorkers, Michael Kaplen and Judith Avner continue to control the New York State’s Traumatic Brain Injury Services Coordinating Council (TBISCC) even though their terms on the council expired in 2004 and 2003 respectively.

A document released to a member of the Kahrmann Advocacy Coalition by the New York State Department of Health reveals that Kaplen’s term expired on February 12, 2004 and Avner’s term expired on August 9, 2003.  The fact they continue to show up at meetings and claim the mantel of council chair and vice-chair is, at minimum, an astonishing display of arrogance and, in an even harsher light,  a rather self-serving desire on both their parts to be the center of attention and control the state’s dialogue on brain injury.  Avner is the current executive director of the Brain Injury Association of NY State,  Kaplen is its past president. Both are lawyers. Advertisements for Kaplen’s law firm display a focus on representing brain-injured New Yorkers.

The TBISCC was formed in 1994 by an act of the state legislature and it can be and should be an important presence beneficial to brain injured-New Yorkers, providers of services to brain-injured New Yorkers and, not at all incidentally, the Department of Health. By design and purpose the council is there to provide the Department of Health with proposals for services for Brain-Injured New Yorkers. A review of council minutes under Kaplen and Avner reveals that the council has offered virtually nothing under their watch in the way of proposals.

As a brain-injured New Yorker and as one whose name is linked to the largest grassroots advocacy group for brain-injured New Yorkers in the state, I can tell you that the TBISCC must be allowed to flourish and act on its mission, two things that will not happen if it continues to be hijacked by two individuals who are not even members of the council anymore.

Keeping it simple

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Many of us, and I am no exception, get so caught up in the perpetual swirl of life’s struggles that we forget to relax, breathe, keep things simple. We forget to live.

Whatever the struggles we each face, either by choice or by unavoidable circumstance, none deserve so much sway over our lives that we lose sight of what is truly wonderful about life, and what wonder is there for us to experience, even with the struggles.

As an advocate, primarily in the arena of brain injury, there is so much dysfunction and bigotry to address I can, and at times have, found myself doing little else, save for reading: a habit that has sustained me through the darkest times, that’s for sure. I live in state with a department of health packed with people who, with some very real exceptions, couldn’t care less about those who live with a brain injury. I live in a state with a brain injury council, called the Traumatic Brain Injury Services Coordinating Council, that has pretty much failed to live up to its stated purpose from day one. I live in a state with a brain injury association that, on the one hand is a remarkable and desperately needed educational presence on brain injury, and, on the other hand, claims to be an advocacy agency when it is not.

In short, the issues with all of the above could consume anyone whose instinct is to promote equal rights.

It is clear to me that being consumed by any one thing, even when honorable, is not healthy, and, in the long run, makes one less effective when it comes to this one thing in the first place.

When you think about it, what is advocacy for equal rights actually about? It’s about the right of every individual to be who they really are in life,  safely, equally.  In life means the ability to live life. To fall in love and walk down the street holding hands with the person you love. It means being able to go out for coffee or a meal or read a book. It means being able to watch movies, birds, people, sunsets, sunrises, thunderstorms, snowfalls, oceans, rivers, streams. It means being able to listen to music, laughter, wind, thunder, conversation, and so on. It means experiencing life, which none of us can do as well as we have a right to do if we are consumed by any one thing.

Keeping it simple so much means staying in the moment you’re in. As a friend of mine recently gone from this life said to me: “Remember, Peter, the moment you’re in is the only place you have to be.”

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.

BIANYS Snubs Volunteers & Support Groups

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The Brain Injury Association of New York State refuses to reimburse its volunteers for their out-of-pocket expenses, even if it means the end of some of its support groups.

Before I continue, it is important to note that the root of this rather bewildering stance on BIANYS’s part rests with its leadership; several sources say there are BIANYS board members and others in BIANYS’s ranks who not at all comfortable with fact the group is pretty much run  by two people, Judith Avner, its executive director and Marie Cavallo, its president.

No organization runs well under the thumb of one or two people.

The genesis of this essay goes like this. Beginning in 2008 I volunteered to facilitate weekly support groups in Albany for BIANYS.  BIANYS covered the necessary liability insurance and all was well. At the time, my round-trip commute to the Albany support group site was 50 miles and I was able to afford the gas. Late last year I had to move from my rental and as a result, moved to a place 75 miles from Albany. I had no intention of letting the distance stop me from facilitating the groups but the now 150-mile weekly round-trip (600 miles a month) became financially unwieldy and the group and I reached out  to BIANYS (Avner and Cavallo) for help with the mileage, i.e., the cost of gas. BIANYS reimburses its staff at a rate of 50 cents a mile. I was told things were tight financially and if they were to help this group with expenses maybe the other volunteers who facilitate groups across the state would expect to be reimbursed for their expenses as well (I am fighting off the urge to say, Well, duh.).

Group members then began an email campaign writing to BIANYS (meaning Avner and Cavallo), telling them how important the groups are to their lives, and suggesting that BIANYS help with half its normal mileage reimbursement rate which would mean $150 a month for the 600 miles rather than $300. Finally, Avner and Cavallo agreed to help for three months at which point they would review things.

Well, as the end of the three months I approached I wrote in and group members wrote in asking for to continued help, Avner was away, Cavallo said she didn’t have the authority to approve even one check to tide the group over until Avner returned. Avner’s return did nothing. Then the story changed.  Avner and Cavallo now said they did not have the authority to approve the help in the first place and would need to refer the matter to the board (I wonder if that ever actually happened). Finally some of the groups had to be cancelled.

Facing the lack of support from the BIANYS that still likes to claim these support groups as its own, group members agreed to cut back to only two groups a month. BIANYS – meaning Avner and Cavallo – were asked, via email, if BIANYS could help with just $75 since now we were down to two groups. Avner didn’t even bother to respond to the request and Cavallo’s response was non-committal. A second email request for $75 did not get a response from either one of them.

And this is the organization that claims to be the state’s leading organization on behalf of brain injury survivors? If you believe that, write me. I know a great bridge in Brooklyn you might be interested in buying.