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

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.

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

  1. not surprised. this is going on for years. When there are no answers or they dont want to take a stance they do not respond to emails. its hard pressed to expect an organization like BIANYS to step up and advocate when they get subsidized by the state and are trying not to break any eggs… they are all in bed together…if someone above them does not get involved nothing will be done. plain and simple.

  2. aaHello, perhaps the BIANYS could use some of that money to support those of us who are in danger of losing our subsidies. I shouldn't advocacy groupd be flourishing with the money they have available to waste on a gala. I suffered my injury in 1998. And have been able to go from Doctors telling my parents I would probably be bedridden for the rest of my life. Because I have been able to achieve a more than significant amount of progress since my injury, I have signed up on the pass plan and am averaging a 2.9 and working parttime as a PCA with other clients. I don't understand why someone who is able to utilize the system to try and return to a productive life must jump through incessant hoops to be treated normally in as many cases as possible. I used to be a gifted student and was the guy in high school who did not study and got A's and B's. Now my memory is not nearly as good because of TBI, but because it is not overly apparent by the way I present it really drives me insane that the people working for the brain injured have little or no first hand experience with TBI. I can not say they are doing a poor job on anything necessarily, but I know I have not heard anyone fighting for those trying to accomplish getting off of the waiver and being a productive member of society. Please understand my thought is not me first really, it is why is one of the injured who is trying to work their way off of the system with the goal to simply help anyone else do the same going through this much crap. Logic would simply say if I want off the system, I should be given help to get off of the sytem. I should not have to jump through endless hoops, and follow rules which actually encourage stagnation. This is my problem with TBI services. I don't think anyone should lose their services I think what needs to happen is that things should be opened up a bit for those who actually wish to work their way successfully off of the waiver, perhaps if this was possible, it would not be in the condition it is. More injured working means more money in and that would immediately mean less of a strain on the funds available because those injured would essentially be able to get promoted through experience and make more money, which would decrease the money that would be needed to be paid out. If I have a TBI and can figure this out, why was I not even invited to this gala? I think my ideas are at least valid enough to warrant discussion and perhqps that is my fault for not pursuing this in perhaps the correct matter, but I have found that because of my disability the biggest problem I face on essentially daily basis, is the great machine to support me. While it does in some respects quite well, its shortcomings are the biggest thing in my way besides my actual injury. I am going to school so that I will be given the chance to perhaps follow a similar path as to what I have been able to achieve. In case those at BIANYS don't realize it, that is what is known as a true win/win. I am not claiming any god like ability, but perhaps I do know something and I have decided to make this my life goal, and those who know me will actually know how seriousi am about this.

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