Tag Archives: BIANYS

The BIANYS Journey of Nope Gala

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“The Brain Injury Association of New York State is the premier support and advocacy organization for New Yorkers with brain injury and their families,” according to the letter. One would be hard pressed to find a statement less true than that.

The letter is a BIANYS fund raising letter asking everyone to donate money to assist them in their “important work” at the fourth annual Journey of Hope Gala (renamed above for accuracy’s sake) at some pricey location in New York City. BIANYS should stop with the spin and be straight about what work they do, and, equally important, what work they don’t do. Perhaps when the authors of the letter, Gala co-chairs Rosemarie diSalvo and Bradley Van Nostrand learn BIANYS is not the advocacy organization it wants everyone to think it is they’ll pause and rethink their involvement.

Perhaps too, when actresses Lorraine Bracco and Penny Marshall, both of whom, according to one website “have stocked the (gala’s) silent auction with celebrity memorabilia from their friends and several of their friends” learn they are supporting an organization that isn’t what it says it is, they’ll re-think their involvement. After all, BIANYS support for New York’s brain-injured individuals and their families is anemic at best. Three Albany-based BIANYS support groups came to an end recently because of BIANYS refusal to reimburse support group leaders for their out-of-pocket expenses and, in the Albany case, a rejection of the pleadings for help from support group members, made up of, you guessed it, the very brain-injured individuals and family members BIANYS says it cares about. 

While BIANYS claims it can’t afford to reimburse its volunteers for their expenses, lets review the cost of attending the gala, as an individual or in one of several sponsor levels which lands you extra tickets (hold onto your hat).

  • Gala Ticket $300
  • Patron Sponsor: $400 (1 ticket)
  • Friend Sponsor: $1,000 (2 tickets)
  • Leadership Sponsor: $2,500 (6 tickets)
  • Bronze Sponsor: $7,500 (8 tickets)
  • Silver Sponsor: $10,000 (10 tickets)
  • Gold Sponsor: $15,000 (20 tickets)
  • Platinum Sponsor: $25,000 (30 tickets)

I wonder how many brain-injured individuals on fixed incomes and their families will be going.

Enough said.

Is the problem NY’s brain injury leadership, the DOH, or both?

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The leadership of New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council seems determined not to hold the state’s Department of Health accountable for anything.

Is it only a coincidence that the same people have led and, in some respects, still lead both groups?

For years attorneys Michael Kaplen and Judith Avner led BIANYS and now they head up the council.

Avner was Kaplen’s pick for assistant council chair even though she is still the BIANYS executive director. When the two attorneys led BIANYS, Kaplen was the board president. Moreover, Kaplen was a BIANYS board member at the same time he was the council’s chair. It is worth noting too that BIANYS relies on a sizeable grant from the DOH in order to operate, a reality that makes Avner’s post on the council high-risk for potential conflict of interest and, given his past relationship with BIANYS, Kaplen faces the same risk.

Violating NY Public Officers Law

Conflict of interest did not stop Kaplen or Avner from voting for a trust fund that would have clearly benefitted BIANYS. Never mind that during a September 16, 2010 council meeting they were warned against doing so by ex-officio council member Nick Rose. The trust fund was to benefit brain-injured individuals who did not qualify for the state’s TBI Waiver and BIANYS because, according to council minutes, “the Brain Injury Association of NYS ( was to) be contracted (with) to assist with the development”of the trust fund and, it is said, receive a financial percentage of the fund itself.

Despite the warning, Avner and Kaplen voted for the fund anyway, even though doing so appeared to put both in violation of New York’s Public Officers Law.  The council’s by-laws say council “members shall refrain from voting procedures in instances where a conflict of interest  may exist as defined by the Public Officers Law.”

DOH Getting Carte Blanche

As an earlier blog post points out that in its lifetime the council has never really offered so much as a single proposal to the DOH regarding what can be done to help brain-injured individuals in the state, proposals like these being the very reason they were formed in the first place. Similarly, throughout its years with Avner-Kaplen duo at the helm, BIANYS never publically held the DOH accountable for anything, a pattern that has not changed under the current BIANYS leadership duo of Avner and Marie Cavallo. Cavallo is the BIANYS board president. Another recent blog post outlines some of the issues BIANYS refuses to address publically even though they have been repeatedly asked to by this writer.

The fact of the matter is one would be hard pressed to find a single example of either group holding the DOH publically accountable for its actions, including its recent attempt to throw a 66-year-old woman with a brain injury off the waiver and charge her $24,000 in the process. It is worth noting too that in an article by Rick Karlin in today’s Albany Times Union regarding this injustice there is no mention of BIANYS. BIANYS had plenty of time to release a statement to the media because I told them in plenty of time and asked them in writing to take a public stance; a written request that was ignored by Avner and Cavallo, yet both will tell you with a straight face that BIANYS is an advocacy group.

Is the reluctance to hold the DOH accountable  a matter of morally bankrupt leadership in both groups, the power of the DOH, or a combination of both?

The Bottom Line

Managing life with a brain injury is a formidable enough challenge as it is. It should not be all the more formidable because groups like BIANYS, TBISCC, and the DOH reveal an across the board penchant for lip service steeped in moral bankruptcy. Something needs to be done. Maybe step one is for the leadership of all three to step down.

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.