I will not be speaking at the Brain Injury Association of New York State’s annual conference next month and quite a few people are asking why. 

While no one supports the BIANYS mission statement any more than I do, all of us, individual and group, need to be right-sized from time to time. All of us, simply because we are human beings, can lose sight of what is truly important and, as a result, our priorities get a bit skewed, albeit unintentionally in some cases. And that, in my view, is what has happened with BIANYS.

While there is no question that BIANYS is probably the most effective teaching voice in the state when it comes to brain injuries – it sponsors and co-sponsors events that provide enormous amounts of desperately needed information – its claim to being the state’s leading advocacy group for survivors of brain injury is simply not true. No individual and no organization can rightfully claim the mantel of advocacy yet remain publicly silent in the face of real threats to those they claim to represent.

You cannot claim the mantel of advocacy yet remain publicly silent when the state’s department of health issues a directive telling TBI Waiver case managers they cannot side with their clients at Medicaid Fair Hearings, a savage directive that all but assures the brain injury survivor will come out on the losing end.

You cannot claim the mantel of advocacy yet remain publicly silent when in 2008 it is revealed that Timothy J. Feeney, at the time the most powerful force in the TBI Waiver, is misrepresenting his credentials to brain injury survivors, their families and providers and then continue your public silence when the DOH essentially enters into another contract with Feeney  knowing full well he continues to misrepresent his credentials.

You cannot claim the mantel of advocacy yet remain publicly silent when the DOH looks to cut as many people from the waiver as possible and slash  waiver services at every available opportunity.

You cannot claim the mantel of advocacy yet remain publicly silent when the DOH all but ignores an alliance of TBI Waiver providers who are simply asking for uniform billing procedures and fair treatment, when the DOH’s utter – and I think intentional – mismanagement of the TBI Waiver has resulted in providers dropping out across the state, a reality that wounds the lives of many survivors of brain injuries.

It is hard, if not impossible, for brain injury survivors, their families, and the dwindling number of providers to  believe BIANYS is an advocacy organization when the aforementioned are under assault and BIANYS is nowhere to be found. It is true that BIANYS has a group of remarkably committed staff known as FACTS Coordinators who do advocate, but because they are paid through a grant from OPWDD, they are only allowed to advocate for those who sustained their brain injury before the age of 21 and their advocacy efforts do not extend to the arena of public policy and DOH directives.

I know, from nearly a half dozen sources, that nearly all the FACTS Coordinators were and are utterly disgusted with the Feeney situation, but their honorable and heartfelt opinions were not enough to lead BIANYS leadership to take a public stand

Having said all this, the rather monumental  flaw in the BIANYS advocacy claim is not my reason for saying no to their invitation to speak at this year’s conference. My reason for saying no revolves around the nature of the speech they asked for and their failure to support five BIANYS support groups. The circumstances surrounding the invitation to speak are somewhat suspect as well. When the lack of an invitation to facilitate a workshop at the conference began to get noticed, I was invited to speak the second day of the conference to motivate attendees to pull together and join BIANYS.

Many feel the absence of a workshop invitation being offered to me this year was a sign BIANYS is  distancing itself from me, primarily because I openly hold the DOH accountable for their treatment of brain injury survivors and BIANYS gets a sizeable grant from the DOH.  While BIANYS denies this, perception is often more powerful than fact. I know of no instance in which BIANYS has publicly disagreed with or challenged a DOH decision, leaving the perception that DOH is calling the shots on both fronts.

For me, an attending reality that revolves around a weekly Albany support group I voluntarily facilitate for BIANYS was the drop that overflowed the cup. When I moved last November from the outskirts of Albany to my current home I was not about to abandon the Saturday groups. However, my weekly commute went from 50 miles to 150 miles, 600 miles a month. Given that I am on a fixed income,  BIANYS was asked to help with mileage reimbursement. It is worth noting that volunteers are typically reimbursed for their expenses because most groups want to keep their volunteers and the reimbursement is a valid business expense.

BIANYS reimburses at 50 cents a mile which, if applied to 600 miles, would be $300 a month. BIANYS said it was low on funds and we suggested they cut the number in half and help us with $150 a month. Finally, after receiving a number of emails from group members, they agreed to $150 a month for a three-month period at which time, they said, they would re-evaluate the situation. Given the heads up that the three months was ending, followed by another email campaign from group members, BIANYS suggested that the matter be handed over to a workgroup for study. BIANYS leadership then announced they could not make the decision because it was a  matter that needed to be brought before the board of directors for review. They’d never said this before.

I sent them an email saying that in good conscience I could not stand in front of several hundred survivors, family members and providers and urge them to join BIANYS because BIANYS truly cares while at the same time knowing that BIANYS leadership was, supportive words aside, not inclined to help five support groups with mileage cost. The importance of support groups in the lives of survivors of brain injury, their families and members of the community is huge. There is something unseemly about claiming support groups as your own while at the same time not supporting them. I told BIANYS leadership  if they agreed to help these groups I’d be happy to speak at their conference.

They have not agreed to help and I will not be speaking.

On the positive side, BIANYS leadership and I will be meeting at my home sometime soon after the conference and it is my sincere hope that all these matters will be resolved and, if they are, I’ll be present and supportive for sure at the 2012 conference.