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.