Category Archives: Brain Injury Association

Saying no to BIANYS

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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.

Next Book: Brain Injury

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Since I suffered my brain injury in 1984 when I was shot and since I began working in the field of brain injury in 1995 I’ve witnessed the presence of the heartfelt commitment of the extraordinary among us as well as the presence of the greedy, self-serving, narcissistic and dictatorial.  I’ve written pages of notes about my experience and with the end of the memoir now in site, one of my next writing projects will be a tell-the-truth book about my experience in the world of brain injury.

Some will be pleased, some won’t. Some will be surprised, some won’t.  Some will be happy, some will be angry. Some will agree, some will disagree. How do I feel about all this? I don’t much care. My responsibility is to be honest and tell the truth to the best of my ability.

One of the things I will write about is what one might call the non-profit myth. The notion that if an agency, company or advocacy group is non-profit it means it really cares. Not so. To be sure, there indeed are terrific non-profits  like the Rochester-based CDR (Center for Disability Rights) headed up by Bruce Darling. CDR is all one could possibly hope for in a non-profit as both a service provider and  advocacy organization.

However, I’ve seen individuals in leadership positions in non-profit settings that are all about themselves. They  have arrived at the rather stupefying notion that the world revolves around them. They lay claim to the advocacy mantle when in truth they offer only lip service and consider their environments to be little more than petri dishes in which they can grow the bacteria necessary to further their self-aggrandizement. As a result, when it comes time to leap into the advocacy trenches and have at it, they are nowhere to be seen. Brain injury survivors and their loved ones along with quite a few healthcare providers know who stepped up to the plate and who didn’t when the New York State Department of Health decided to bring Timothy J. Feeney of bogus-college-degrees fame back into the fold. Brain injury survivors and their loved ones along with quite a few healthcare providers know who spoke up and who remained silent when the state’s DOH began to tell waiver providers they cannot support brain injury survivors at Medicaid Fair Hearings.

No organization of any kind, for-profit or non-profit, ought to be about or solely reliant on only one person or a handful of people.

I will also write about the for-profit myth, the myth that says anything that is for-profit is greed based. While this is often true, there are times it’s not. Until recently, Cortland, New York’s CCRP (Cortland Community Re-Entry Program), a for-profit that operated under the oftentimes problematic umbrella of Healthcare Associates, was one of the best if not the best Traumatic Brain Injury Waiver program in the entire state. The program crumbled when, after the untimely and tragic death of the head of Healthcare Associates, Anthony Salerno,  the running of the organization fell into disarray and CCRP fell apart, but not because it was a for-profit.

I may well write more about this upcoming writing project, but this is enough for now. Stay tuned.

 

NY State DOH Snubs Brain Injury Summit

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Despite agreeing to continue attending the brain injury summits, the New York State Department of Health today was a no-show. The snub was  a blatant act of disrespect for the groups who did attend the second Brain Injury Summit: The Brain Injury Association of New York State, the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities, the Providers Alliance and the Kahrmann Advocacy Coalition. Moreover,  it further underscored the ongoing problem of poor communication on the part of DOH, a problem DOH Deputy Commissioner Mark Kissinger acknowledged the DOH has at the first summit this past September.

The snub served to further enhance the view that the DOH has very little respect for brain injury survivors. The DOH didn’t even have the decency tell people they weren’t coming. Keep in mind, this is the lot that gave the “keys” back to PhD-Wannabe Timmy Feeney.

The summit attendees did very much agree on a response. Given the response was a group design, it would be inappropriate for me to elaborate, other than to say the response is rooted in a genuine care and concern and commitment to assure that brain injury survivors and providers are given the kind of support and clarity they deserve.

I can also tell you that all in attendance were heartfelt and genuine in their commitment to help brain injury survivors grow their independence and, it must also be said, that all in attendance, this writer included, continued to express a willingness to work with the DOH.

However, if you’ll allow me a shot at pointing out the obvious, it is hard to work with anyone who doesn’t bother to show.

The third summit is scheduled for February 11, 2011.

Brain Injury Summit II This Friday

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The second Brain Injury Summit will be held Friday morning in Albany.  Those invited included the Brain Injury Association of NY State, the New York State Department of Health, the New York State Commission on Quality of Care, the Providers Alliance, the Brain Injury Coalition of Central NY, and the Kahrmann Advocacy Coalition.

Given that effective and fluid communication between all is a challenge not uncommon in any multifaceted system, communication will be the primary focus.

The DOH of late has taken a great deal of heat, both from this “pen” and from others. It is my sincere hope that some of the challenges now being faced by survivors, providers, advocacy groups and, not incidentally, the DOH are clarified so when all parties leave the summit, heads are in a more serene place, there is greater clarity all around,  and the commitment to open and effective communication is, in some instances renewed and in other instances begun.

All parties actively took part in the first summit and I fully expect the same this time. There are some justifiably frightened survivors across the state and some understandably worried providers. To say lives are at risk is anything but an understatement.

 

NY’s TBI Waiver: A New Beginning? Maybe

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In an intense forthright discussion with me today, three New York State Department officials, all  part of an impressive new-leadership for the state’s TBI Waiver, made it clear that Timothy J. Feeney will not have the contractual authority he did in the past nor the ability to exceed any contractual authority as survivors (including this writer), family members and providers witnessed in the past.

It was also made clear that the “training” provided by Feeney’s company will not be the only option for providers when it comes to being approved for being PBIS (Behavioral) Directors.

Equally important to understand is that the state’s contract is with the Southern Tier Independence Center (STIC) in Binghamton, not Feeney’s company, and STIC is on the hook to make sure the neurobehavioral contract’s deliverables are provided as called for in the contract. All indications are STIC will be giving the work to Feeney and his people.

I like, and was genuinely impressed, with the three folks I met with today: Deputy Commissioner Mark Kissinger, Carla Williams, Deputy Director Office of Long Term Care and Mary Ann Anglin, Director of the Division of Home & Community Based Care Services. Kissinger is wonderfully straight forward and direct, Ms. Williams, who will never be accused of being shy or understated, is refreshingly intense and forceful, and Ms. Anglin is  a marvelously clear and creative thinker. All three made their loyalty to the best possible waiver clear to me, and I have no reason to disbelieve them. If I did (or ever do), I’ll tell you.

It is important to note too that these three were not at the helm back in the days when Feeney was able to run roughshod over people and providers, inflicting admission holds at will and, as many of us know, acting on his penchant for reminding providers that if they didn’t do what he told them to do, he’d shut off their admissions straight away. Feeney and his crew would at times direct who should be fired and who should or should not be promoted. I can even recall instances where he directed that cognitive therapy is not an option because it doesn’t work; about as absurd a claim as one can make in the world of brain injury. Kind of like telling someone summiting Everest that oxygen is irrelevant.

I was also reassured that survivors, families and providers should not hesitate to file complaints if they have them. I explained that in the past there was a reality-based fear in filing complaints against Feeney and his crew because the response was often punitive. Fear can be a helluva manager. I was assured in no uncertain terms that those days are in the past.

And so we will see. I can tell you that if you have complaints or concerns of any kind, you can file them with the Kahrmann Advocacy Coalition (kahrma1@gmail.com) as well as with the Brain Injury Association of New York State.