Monthly Archives: July 2011

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.

 

BIANYS is not an advocacy organization

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The Brain Injury Association of NY State is not an advocacy organization despite its claim to the contrary.

Without question they are a superb source of education when it comes to brain injury and the NYS Department of Health and providers statewide would be wise to learn from them, but they are not an advocacy organization and should stop saying they are.

The Oxford English Dictionary, considered the most comprehensive English language dictionary in the world, defines advocacy as “the giving of public support to an idea, a course of action or a belief.”  I can’t think of a single public stance or public statement BIANYS has made advocating for brain injury survivors in the state, certainly not when the advocating would require them to hold the NYS DOH accountable for it’s deplorable treatment of brain injury survivors, particularly brain injury survivors on the state’s TBI Waiver.  While BIANYS leadership will deny they are in bed with the DOH, their actions or lack thereof indicate otherwise.

Consider the following:

  • If you read through past BIANYS newsletters you’d be hard pressed to find so much as a blurb about anything they are actively advocating for. BIANYS leadership will tell you, they’ve told me, that they have their way of doing things and they do advocate. I may be the first to notice the phrase, stealth advocacy. If those you claim to care about and serve are never informed of your advocacy efforts, then something is deeply wrong.
  • BIANYS was dead silent when it came to light in 2008 that Timothy J. Feeney, then the most powerful force in the TBI waiver, was misrepresenting his credentials to all comers, claiming to have a valid PhD and valid masters degree when he had neither. At the time DOH would close a provider down or stop a provider’s admissions solely on Feeney’s say so. I remember Feeney telling one provider that if he learned they were including cognitive therapy in their program he’d close them down. A statement like that makes incompetence look like expertise.
  • When the Feeney situation was brought to BIANYS’s attention by this writer (I was a BIANYS board member at the time) BIANYS made it clear they would do nothing. In fact, one board member who I will not identify, wanted to know what difference did it make if someone was lying about their credentials if they did good work.
  • BIANYS refusal to address the Feeney issue and advocate for the rights of brain injury survivors, their families and providers across the state led me to resign from the board. It was as if I’d part of an organization that claimed to stand against anti-Semitism yet fell silent when it was informed someone in power was abusing the trust and, in this case, clinical safety, of Jews.
  • When it came to light last year that the DOH issued a directive blocking service coordinators from supporting waiver participants at Medicaid Fair Hearings, a directive that can only be seen as an attempt to deny waiver participants real justice, BIANYS uttered not so much as a syllable.
  • Then, of course, there is the matter of the  TBI Waiver complaint line which is answered by BIANYS. BIANYS has been complicit in a TBI Waiver grievance process that does not inform complainants of the results of their complaints. Once a complaint is “resolved” by the DOH,  BIANYS receives written notice from DOH letting them know that the complaint’s resolution:  resolved, unfounded etc. BIANYS staff are not even permitted by BIANYS leadership to inform complainants of these results.

A silent advocate is not an advocate. If BIANYS does not believe me, perhaps the words of these three folks might enlighten them (italics are mine).

Dr. Martin Luther King Jr. “Our lives begin to end the day we become silent about things that matter.”

Ruth Messinger (currently the President and CEO of American Jewish World Service). “If there’s one thing that Jews understand, it’s the danger of silence from the international community.”

Thomas Jefferson. “All tyranny needs to gain a foothold is for people of good conscience to remain silent.”

In the meantime, BIANYS should no longer say they are an advocacy organization – until they are.

NYS DOH considering the possibility of justice

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The NYS Department of Health says it will consider telling those who file complaints related to the state’s TBI Waiver  – primarily people with disabilities who live with brain injuries -  the results of their complaints. Currently complainants are never told. In fact, several RRDCs (Regional Resource Development Centers) throughout the state say they’ve been directed by DOH not to tell complainants the outcome of their complaints. RRDCs are agencies under contract with DOH to oversee waiver providers and participants.

On June 30th this writer sent an email to NYS Deputy DOH Commissioner Mark Kissinger which read, in part, “On behalf of Kahrmann Advocacy Coalition members and all those who care about brain injury survivors in the state, I am asking you to immediately issue a directive requiring that those who file complaints related to the TBI Waiver are to be informed of the results of their complaint within 60 days of filing the complaint.  Right now complainants are never informed of the outcome of their complaints – never.”

Kissinger responded via email saying, “I will have staff look into your suggestion and get back to you within a reasonable period of time.” I’ve heard nothing yet. It takes more than two weeks to decide if justice should be served?

I wonder what DOH staff have to look into? Are people really sitting around a table somewhere wondering whether complainants should be told the outcomes of their complaints? Who would argue that they shouldn’t? Well, the DOH for one.  Groups like the state’s Traumatic Brain Injury Services Coordinating Council and the Brain Injury Association of NY State need to publically speak up. Any and all groups who say they are committed to the notion that people with disabilities deserve equal justice under the law and equality on the regulatory front should be outraged, and outraged so others notice. Silence is not an option for them. To remain silent is to support the DOH’s continued assault on the rights of people who live with brain injuries.

If you want to let DOH know your feelings on this, you can write to Mark Kissinger at mlk15@health.state.ny.us or call his office at 518-402-5673.

NYS TBI Council Going to Waste

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For more than a decade now the NYS Traumatic Brain Injury Services Coordinating Council has offered virtually no proposals to the state’s Department of Health and the DOH has not asked for any.  Apparently it doesn’t much matter that “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.”

Instead, more than 10 years of TBISCC meeting minutes tell us the council – under the leadership of first Charlie Wolf and now Michael Kaplen – has had a wide range of important presenters but failed to come with any real comprehensive proposals for the DOH. The list of presenters is indeed impressive: VESID, NYS Education Department, Office of Mental Heal, NYS Crime Victims Board, Office of Alcohol and Substance Abuse Services, OMRDD (now OPWDD), Office of Advocates for People with Disabilities, Mt. Sinai School of Medicine, NYS Division of Veterans Affairs, Unity House, NYS Coalition on Domestic Violence, the Brain Injury Association of NYS and more. But to what end? What is the point?

All this and more makes one wonder why the council has never come up with any comprehensive proposals that include “long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” Is the DOH wielding undue influence behind the scenes? Are there conflict of interest at play that are problematic? Are some members of the council (not all I assure you) there for rather self-serving reasons. Question: Who nominated Charlie Wolf for council chair? Answer: Charlie Wolf!

The TBISCC has an important voice and an important role to fill. It can have and should have an influential presence.

There have been moments, albeit rare ones, when the council has shown signs of life and self-awareness.  Minutes from the September 10, 2002  reveal  “(t)here was strong concern voiced by many members that the Council has lost its charge and needs to re-think what its purpose is.”  Minutes from a September 9, 2003 meeting say the council drafted a letter to then DOH official Betty Rice expressing the council’s dissatisfaction “with not being allowed to review (TBI Waiver Manual’s) revisions.”

Then, like now, the DOH is inexcusably insular and, frankly, arrogant. Here is a state agency charged with overseeing a waiver for people with brain injuries yet they have no required brain injury training for any of their employees, contract or otherwise, and clearly no intention of availing themselves of the huge swaths of knowledge about the subject that has always been available to them with the TBISCC, the Brain Injury Association of NY State (which provides superb training on brain injury), the Alliance of TBI Waiver Providers and more.

My suggestion to the council is to prepare and make some comprehensive proposals, publicize the proposals you make and publicize the response you get from the DOH. Start with a Facebook page, and then expand.

Flipping Switches

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When’s the last time you saw an elected state or federal official struggling with poverty? I don’t know that there is one. 

I got to thinking about this recently when I read that Speaker of the House John Boehner accused the president of ignoring reality; this from a man who no doubt uses tanning beds and is apparently oblivious to the threat of melanoma. Boehner, along with other Republicans and, don’t be fooled, a number of Democrats, are hell bent on protecting tax cuts for the millionaires and billionaires, the oil and gas companies, and they have even drawn a line in the sand when it comes to protecting the tax break big-buckers get for their corporate jets.

For many many years Ralph Nader has been right and still is right when he says the country is run by big business. That’s who is driving the car in D.C. and God forbid Obama and too few others ask them to chip in their fair share. Think the New York Times is leftwing? Don’t be so sure. A recent headline regarding the financial crisis talks about Obama wanting tax increases; a headline the Time knows damned well will lead most readers to think the president wants to increase taxes on all Americans, middle class as well as the poor, when nothing could be further from the truth.

And why would the Times opt for a purposefully misleading headline; its owned and run by wealthy folks who don’t want their tax breaks ended.

If you have plenty of money and little if any conscience, it doesn’t take much to flip a switch designed to not just protect but increase your wealth knowing full well that your switch flipping will damage some lives, destroy others, and end still others. In moments like this I am hoping there is a just God because if there is, payback will be a bitch for some of these folks. Perhaps those wounded and ended by their greed will offered a chance to watch the payback if they want to.

I wish I could flip a switch that would turn off the greed-based decision making spewed by too many of our wealthy elected officials.