Memo to BIANYS, TBISCC & DOH: Don’t get comfortable

I smiled this morning when I heard Occupy Wall Street protestors plan on marching in front of the homes of Wall Street bigwigs; it is, among other things, one of the very tactics the Kahrmann Advocacy Coalition (KAC) is currently considering. Marching in front of the homes of those in this state whose claims to support the rights of Brain-Injured NYers are, more often than not, nothing more than lip services. Yet some of them make a good living off the backs of those of us who live with brain injuries.

Do not for one moment think KAC’s actions are entirely up to me; they are not. There is a membership and a leadership team and together the next steps will be defined and enacted. What is clear is this: direct action is needed.  We have given the state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and Department of Health every opportunity to do the right thing. It seems evident that the TBISCC’s biggest obstacle may well be its leadership: Michael Kaplen and Judith Avner, which is why the idea of protesting in front of their homes is being considered. Both BIANYS and TBISCC will not so much as utter a syllable if the utterance places them at odds with the DOH. God forbid.

This brings me to another tactic under consideration. Urging the state legislature and the governor to slash funding for BIANYS, meeting with the DOH and OPWDD (Office for People with Developmental Disabilities), both state agencies provide large grants to BIANYS, and pressuring them to cut the grants unless BIANYS lives up to its stated purpose.

The Kaplen Avner crowd remind me of those who, left to their own devices for long periods of time, grow comfortable and begin to experience themselves as immoveable objects. Well, Kaplen and Avner should not get too comfortable. I would suggest that others like the DOH’s Maribeth Gnozzio, Mark Kissinger, Mary Ann Anglin and Commissioner Shah as well as BIANYS President Marie Cavallo not to get too comfortable either; we may be protesting in front of your homes too.

BIANYS ignores its members rights & more

The Brain Injury Association of NY State will not support the rights of brain-injured New Yorkers to be informed of the results of the complaints they file through the joint BIANYS-NYS Department of Health TBI Waiver Complaint line. The DOH refuses to tell complainants the results of their complaints. BIANYS President Marie Cavallo and BIANYS Executive Director Judith Avner have chosen to ignore a September 14 email sent to them by this writer on behalf of the Kahrmann Advocacy Coalition, the largest advocacy group for brain injury survivors in the state, which read exactly as follows:

Please note that many are copied and blind-copied on this email, including quite a few BIANYS members who are told by you that BIANYS is the leading advocacy organization in the state.

We have one specific question and would like a direct answer to this specific question. Anything less and we will continue to conclude BIANYS does not believe TBI Waiver complainants should be given the full results of their complaints.

Does BIANYS believe TBI Waiver complainants should be given the full results of the complaints they file through the TBI Waiver complaint line current answered by BIANYS staff? Yes or NO

Keep in mind, a large number of people, including your members, are watching this email and awaiting your answer.

Peter Kahrmann, KAC Founder

Last I knew BIANYS had less than 400 members, however, a significant number of those members also belong to KAC, including me. So, it is a statement of fact to say BIANYS refusal to even answer the email is, once again, another example of BIANYS (which falsely claims to be the leading advocacy organization in the state) ignoring  the rights its own members and the rights of all brain-injured New Yorkers and their families.

So far, the BIANYS board of directors has done nothing to address this.

NYS Brain Injury Association & Council stand against rights of brain-injured New Yorkers

New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council are not interested in defending the rights of brain-injured New Yorkers.

  • Brain-injured New Yorkers who file complaints related to the TBI Waiver are never informed of the results by the state’s Department of Health. Both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position. 
  • Waiver providers are not allowed by the DOH to advocate for brain-injured New Yorkers at Medicaid Fair Hearings; both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position.
  • The assault on housing subsidies being inflicted by the DOH on brain-injured New Yorkers, a campaign that puts some at risk for homelessness and threatens the lives of others.  In one instance a federal court judge had to step in protect the life of one brain-injured senior from the DOH Campaign. Both BIANYS and the TBISCC are well aware of the DOH housing-cuts campaign; their silence on the matter reflects this position.

Both groups have been asked repeatedly to address all these  issues and while the TBISCC gives intermittent lip-service to the Medicaid Fair Hearings question, BIANYS – which proclaims itself the leading advocacy organization in the state for brain-injured New Yorkers – remains stone silent. At the beginning of yesterday’s council meeting Judith Avner, assistant chair of the council and executive director of BIANYS, said the council needed to hear what the actual DOH policy was regarding fair hearings. The DOH has for months been saying they’re working on a policy. One might think Ms. Avner’s statement was  reason for hope but when DOH official MaryAnn Anglin arrived at the meeting later no council member, including Ms. Avner, asked her about the fair hearing policy.

It seems one has a better chance of nailing Jell-O to the wall than getting the council to offer the DOH  proposals that have anything whatsoever to do with the TBI Waiver.  It had been proposed by this writer on behalf of the Kahrmann Advocacy Coalition the the council formally recommend that all DOH staff, contract and otherwise, be required to take training in brain injury now offered by BIANYS. DOH staff and contract staff involved with brain injury receive no mandatory training in the brain or in brain injury. While BIANYS is not the advocacy organization it claims to be, it is, without question, the best educational resource for understanding brain injury in the state. The council can’t even make this recommendation!

The DOH’s intentions are clearly sinister. One can only conclude that the reason for blocking waiver providers from supporting their brain-injured clients at Fair Hearings is to undercut the client’s ability to prevail, thus making it easier for the DOH to kick them off the waiver. One can only conclude the reason complainants are not given the results of their complaints is a reflection of the DOH covering its, well, ass. One can only conclude the reason the DOH is kicking as many people off the waiver and out of their homes as possible is to save money, even though this literally risks human life.

The silence of BIANYS and the TBISCC tells us both groups agree with the DOH, at least the leadership of both groups does.

When this writer spoke during the public comment period at yesterday’s meeting and told the council that there are brain-injured New Yorkers whose lives are at risk because of the actions of the DOH and the silence of BIANYS and the council, council chair Michael Kaplen responded by immediately adjourning the meeting.

BIANYS and TBISCC leadership needs to either step up or step out, and soon.