More on compassion, love & advocacy

Three very thoughtful comments in response to the last blog post,  Anger, compassion, love, advocacy & BIANYS,  along with some equally thoughtful emails and phone conversations have helped me recognize it would be wise for me to write more about what one reader accurately summed up: “Your recent blog piece sounds like you are reviewing your advocacy tactics.” It’s true. I am and always try to with varying degrees of success.

All of us are wise to keep track of the patterns we find ourselves in. Sometimes it takes those close to us to point them out, and if we are centered enough, we can try on these observations and change accordingly without falling into the trap of clinging to old habits. John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” How true.

I want to comment a bit on some of what I’ve read and heard in response to the last blog piece. But first  we must stipulate to the fact that the very act of holding people and organizations accountable may upset people. I can’t do anything about this. What I can do is advocate with intensity and tenacity and honesty and do my level best not to make anything sound personal. But, if leaders of various groups, government agencies, and others blatantly ignore those they claim to serve, I am going to say so. If organizations do not do what they tell people they do, I am going to say so. I have no other choice. One thing is very clear, things can’t go along business as usual when it comes to the realities currently being faced not just by brain-injured New Yorkers but by all people with disabilities in this state and beyond.

What I must pay close attention to is my contribution to the push for change. People in leadership positions must recognize and, in their choices, live the following reality: the Kahrmann Advocacy Coalition is not about Peter Kahrmann any more than the Brain Injury Association of NY State is about Judy Avner or Marie Cavallo, or the Traumatic Brain Injury Services Coordinating Council is about Michael Kaplen and Judy Avner. These groups are about and only about the people they are there to serve. And if any of us – including me! – gets too it’s-all-about-me, people around us need to call our attention to this and we need to listen and change accordingly.

Some things are not personal. It is not a personal attack for me to point out that Michael Kaplen and Judy Avner are sitting on a council even though their terms expired seven and eight years ago respectively. There is something not right about this and it needs to be addressed and I would point out this truth gives them the opportunity  to do what anyone – including me – in leadership positions must do – and that is recognize when we’ve fumbled or gone wrong and do the right thing. There is nothing personal about my pointing out that the council, certainly under Kaplen’s chairmanship, has failed to do pretty much of anything it was designed to do, and this is something he needs to reflect on, step down, and let others take the lead.  Upon hearing that George Washington stepped down after his second presidential term, King George of England said, “If Washington gave up power he is the greatest man on earth.”

Now, to the comments.

One person wrote in a beautiful statement about Marie Cavallo and I could not agree more. Marie has very much given and continues to give her heart and soul to the cause of brain-injured New Yorkers. It is true too that she is in a position where speaking what she really thinks is politically risky, and here is where, like me, she may want to do some reflection; is the “forced” silence worth the position? Only she can decide that. I love her no matter what she does, and I can say the same about Judy.

Another person wrote, in part, about the importance of establishing partnerships; they too are right. It is important (I am quite sure my correspondent knows this) that groups who form partnerships understand they are partnerships, meaning one group can’t simply say to another; you must accept everything about us as is, especially when some of the as is hinders or impedes equal rights for brain-injured New Yorkers.

Another person wrote in pointing out that BIANYS  is no longer the answering component for the complaint line, now the regional representatives for DOH will do that. Two things: this change does not change the fact complainants never get the results of their complaints and perhaps now BIANYS will be able to openly advocate that they do.

We are all works in progress – including me.

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.

The BIANYS Journey of Nope Gala

“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.

Saying no to BIANYS

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.