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Has New York State’s Brain Injury Association leadership lost its way?

May 17, 2017 • KAAdmin

The Brain Injury Association of New York State last year decided it can better serve New York State’s brain injury survivors and their families if it’s not required to have as many of them on its board of directors.

During a May 2016 meeting in New York City, with then board President Lois Tannenbaum absent, the board eliminated the 51-percent bylaw mandating a survivor-family majority on the board, lowering the mandatory percentage to 27 percent.

BIANYS is a sister brain injury advocacy group whose mission we wholeheartedly support. That said, our responsibility as an advocacy-watchdog group compels us to follow-up on signs-and-symptoms of oppression of the right people with disabilities and their families have to be the leaders of their own voice.

KAC flatly rejects the premise that says a civil rights group becomes stronger by reducing the voice of those it represents. We believe the opposite is true. Any civil rights group: women’s rights, disability rights, African-American rights, LGBT rights, and so on, is far better served when the majority of the board is composed of those the group represents, when it frees the voice of those it represents to express itself.

In an effort to understand who or what prompted BIANYS to eliminate the majority survivor-family bylaw, KAC chose a private approach first.

 KAC reached out to BIANYS leadership. On August 14, 2016, Mark Berger and Nancy Peers, advocates and KAC board members, met in a phone conference with BIANYS board president, Barry Dain, and vice-president, Cindy Dott (Mr. Dain became BIANYS board president on July 1, 2016).

According to KAC’s advocates, Mr. Dain began the meeting by asking if KAC was recording the conversation. It was not.

Mr. Dain said the decision to eliminate the survivor-family majority bylaw “was spearheaded by Lois Tannenbaum as part of the strategic plan,” an assertion sharply contested by Ms. Tannenbaum.

Mr. Dain said the elimination of the majority bylaw was done to make room for professionals like himself. According to KAC’s meeting notes, Mr. Dain said the change “allows opportunities for more professionals like myself to be involved as I am not a TBI survivor or family member. Folks who are passionate, have a life focus like myself as someone with a brain injury gets the short end of the stick.”

KAC reached out to Ms. Tannenbaum for comment.

Ms. Tannenbaum sent emails to KAC and Mr. Dain saying she’d been opposed to eliminating the majority survivor-family bylaw. Additionally, Ms. Tannenbaum provided KAC with an email she’d written documenting her opposition to  eliminating the bylaw.

When KAC provided a copy of this email to Mr. Dain and Ms. Dott, neither would comment on its content.

KAC was provided with a copy of Mr. Dain’s email response to Ms. Tannenbaum’s email taking him to task for attributing the bylaw change to her.  Mr. Dain said, in part: “I cannot recall the details of my conversation with KAC at this juncture.” We wonder why he didn’t ask Ms. Dott.

Mr. Dain said the BIANYS board is currently 70-percent survivor-family and there are no plans to change it. If that is true, why eliminate the majority survivor-family bylaw in the first place?

It seems clear that  Mr. Dain and Ms. Dott along with BIANYS Executive Director Eileen Reardon support the majority elimination.

We believe the elimination of the survivor family majority bylaw makes it impossible for BIANYS to live up to its truly admirable mission statement: The mission of the Brain Injury Association of New York State is to minimize brain injury through prevention and to support, educate and advocate for individuals with brain injuries and their families.

We urge our sister group to reinstate the majority bylaw. You cannot have purity of mission in your advocacy and oppress the voices of those you serve at the same time.

And, sadly, BIANYS may have another problem.

Earlier this year, KAC reached out privately to BIANYS leadership, Mr. Dain and Ms. Dott, to let them know three sources, independent of each other, have alleged to KAC that a BIANYS official (not Mr. Dain and not Ms. Dott) has expressed the belief that individuals with brain injuries are not able to be effective board members. Mr. Dain responded by cutting off communication with the KAC advocates who provided it. A disturbing development, in part because we would hope someone would let us know if allegations of behavior contrary to our mission were made about someone affiliated with us.

It is unclear if BIANYS board members have been made aware of the allegations.

That said, we do applaud Mr. Dain’s decision not to seek another term as chair of the New York State’s Traumatic Brain Injury Services Coordinating Council (TBISCC). In 2016 for what appears to be the first time in its history, the council failed to meet the number of times during the year required by its own bylaws – three. The TBISCC meeting scheduled for April 2017 was cancelled.

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