BIANYS ignores its members rights & more

The Brain Injury Association of NY State will not support the rights of brain-injured New Yorkers to be informed of the results of the complaints they file through the joint BIANYS-NYS Department of Health TBI Waiver Complaint line. The DOH refuses to tell complainants the results of their complaints. BIANYS President Marie Cavallo and BIANYS Executive Director Judith Avner have chosen to ignore a September 14 email sent to them by this writer on behalf of the Kahrmann Advocacy Coalition, the largest advocacy group for brain injury survivors in the state, which read exactly as follows:

Please note that many are copied and blind-copied on this email, including quite a few BIANYS members who are told by you that BIANYS is the leading advocacy organization in the state.

We have one specific question and would like a direct answer to this specific question. Anything less and we will continue to conclude BIANYS does not believe TBI Waiver complainants should be given the full results of their complaints.

Does BIANYS believe TBI Waiver complainants should be given the full results of the complaints they file through the TBI Waiver complaint line current answered by BIANYS staff? Yes or NO

Keep in mind, a large number of people, including your members, are watching this email and awaiting your answer.

Peter Kahrmann, KAC Founder

Last I knew BIANYS had less than 400 members, however, a significant number of those members also belong to KAC, including me. So, it is a statement of fact to say BIANYS refusal to even answer the email is, once again, another example of BIANYS (which falsely claims to be the leading advocacy organization in the state) ignoring  the rights its own members and the rights of all brain-injured New Yorkers and their families.

So far, the BIANYS board of directors has done nothing to address this.

NYS DOH ends contract with Feeney

It seems the efforts of this pen, the Kahrmann Advocacy Coalition, and others have finally paid off. Sources say the NYS Department of Health has cancelled its contract with Timothy J. Feeney et al effective the end of this month.

This writer revealed in 2008 that Mr. Feeney  misrepresents his educational credentials. He claims to have a valid masters degree and PhD when he has neither. Over the past three years this writer along with other real advocates – not the lip-service advocates in the state who seek headlines based on words not actions – have worked hard to have Mr. Feeney removed from his post in the Statewide Neurobehavioral Project, a group that was affiliated with the state’s Traumatic Brain Injury Waiver. Sources say the DOH has terminated the contract in its entirety.

Those who know me well, I mean really know me well, know I take no pleasure in Mr. Feeney’s demise nor in the demise of the other staff that worked in the project. However, like all of us, they are accountable for their choices. I am, however, very glad that survivors of brain injuries on the TBI Waiver, their families, and the many truly good providers of waiver services will no longer have to deal with Mr. Feeney. Life with brain damage is tough enough, dealing with dishonest people at the same time you are trying to learn how to manage life makes it all the tougher.

I have little doubt Mr. Feeney will continue to misrepresent himself in any venue he can. Hopefully others will be pick up where the DOH  left off and require he be honest or remove him from the field.

The NYS DOH has very little to be proud of when it comes to its oversight of the TBI Waiver; however, it can be proud of the decision to end the contract.

Brain Injury Summit II This Friday

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.


A Dangerous Combination

What is becoming increasingly clear is the absence of regulations, the absence of clear cut policies and procedures, leadsto chaos and chaos leads to suffering. I am talking here about New York State’s Traumatic Brain Injury Waiver which is overseen by the state’s department of health. While recent posts have detailed the kind of callous treatment I’ve been enduring at the hands of the state’s DOH, I am not alone. Many are going through the same kind of experience throughout the state.

To date there are more than 50,000 readers of this blog and from time to time some of them take me to task, sometimes harshly. But, to their credit, their opinions are driven by the search for truth, a justifiable desire to hold me accountable, and, at times, a straight-up  difference of opinion. In other words, they hold my feet to the fire and sometimes when they take me to task, they are right. I’d be a fool to be anything but grateful to them, and I am. Very.

What is markedly absence from my readers when they take me to task is lip service. They say what they mean and mean what they say. The substance of their honesty is refreshing. They are a lesson in the absence of lip service, a lesson that ought to be learned by some in the department of health and even some in the advocacy community who say all the right things but do nothing. After all, we are talking about people’s lives, the quality of their lives and, in some cases, their ability to keep their lives.

A Dangerous Combination

The absence of regulations coupled with a penchant for lip service is a dangerous combination.

Some weeks ago I met with three DOH officials: Deputy Commissioner Mark Kissinger, Director of  Division of Home & Community Based Care Services Mary Ann Anglin,  and Deputy Director of the Office of Long Term Care Carla Williams. Truth be told, I genuinely like all three of them. Mr. Kissinger certainly seems to be a good and decent man whose heart is in the right place. Ms. Williams is an extremely sharp refreshingly no-nonsense individual and Ms. Anglin is an extraordinary thinker and communicator.

There are, however, two things (among others) that an advocate has to be careful about. One, as an advocate you can’t allow the fact you dislike someone or that someone dislikes you to drive your decisions. Conversely, you can’t allow the fact you like someone or that someone likes you to stop you from holding them accountable. Advocacy is not pain-free.

During this meeting Carla Williams said the state’s TBI Waiver is the best of its kind in the country. Well, a couple of things. Certainly having a waiver is far better than not having a waiver. No argument there. But, if New York’s waiver is the best in the country, that doesn’t say much for the waivers in other states, because New York’s waiver, which is absent any clear regulations, is, sadly, a minefield of dysfunction.

The Providers Alliance, a group of about 40 companies that provide waiver services has clearly documented that no clear-cut billing policy for waiver providers around the state exist and this has proven highly problematic and costly, both for the providers and survivors.

There have been instances, for example, when a doctor will issue a written order directing that a survivor needs staff to be with him or her throughout the day. The provider is compelled to, wants to and does provide the staff right away. The problem is there are times the DOH has not signed off on the service and may not do so for weeks, which means the provider may not get reimbursed for the service they’re providing.

To its absolute credit, the Providers Alliance has provided the DOH with a carefully thought-out series of recommendations to improve the unwieldy TBI Waiver manual (I’ve seen their work, it is superb), yet there has been no real response to their efforts. Curiously, the TBI Waiver manual lists six indexes, none of which are present in the manual!

Moreover, the DOH is informing quite a few survivors of brain injury around the state that there services will be cut and, in some cases, discontinued all together. The problem here is these decisions are being made by people who have utterly no understanding of brain injury, much less any real working knowledge of the human brain.


Actions Speak Louder than Words

Once when I was a boy I complained to my father about the fact some phrase was a cliché. My father, the greatest gift life has ever given me by the way, smiled and said, “Well, Pete, there’s a reason they become clichés.”  He was right.

Which brings me to the cliché, actions speak louder than words.

So, let’s compare Words versus Actions:

Words: The TBI Waiver manual provides a list of participants rights on Page 6, one of which reads says participants must “Be treated as an individual with consideration and respect”.

Actions: Waiver participants, including this writer, are having their services cut, reduced or delayed by the DOH without warning and, in my case and certainly others, without explanation. Moreover, requests for explanations are largely ignored. Consideration and respect?

Words: Participants must  “Be treated as an individual with consideration and respect”.

Actions: Capitol Region RRDS Natalie Marabello implies this writer is feigning the need for a life alert and white noise machines and further implies that he is wasting her time. Result? Ms. Marabello is promoted to Lead RRDS. Consideration and respect?

Words: DOH officials insist they will decide whether to approve requests for things like life alerts and white noise machines along with other forms of assistive technology and, in some cases, mediations, on the merits, and, in this effort ask for documentation from doctors supporting the request.

Actions: This writer and others across the state have requests in from assistive technology with the required letters from both a doctor and psychotherapist, the RRDC has signed off on the request and the DOH still does not sign off on it. What form of measurements, specifically, does the DOH use to determine the merits?

Words: One section of the participants rights in the TBI Waiver manual reads, “Have your complaints responded to and be informed of the resolution.”

Actions: The waiver complaint line protocol between the Brain Injury Association of NY State and the DOH not only fails to set forth any time lines within which a complainant must get a response, it fails to mandate that a complainant get a response at all.

The point is, all parties need to get together to resolve this, the DOH it seems has a penchant for behaving in a rather insular fashion, and this serves no one’s interest, unless of course we are talking about  Social Darwinism and all that drives the DOH is a desire to be the big kid on the block.

My hope is that all will come together and resolve all this, because in the mean time, survivors, families, and providers are suffering.




Back to Belvedere

Next  Monday I will go back to the Belvedere Brain Injury Program to talk with survivors and others about the Kahrmann Advocacy Coalition (KAC), the largest survivor-led advocacy coalition for brain injury survivors in the state. It will be my first time back since I was forced out in early 2008 because I would not remain quite when I saw survivors being denied their rights by some (not all) of the leadership in Belvedere’s substance abuse program. Moreover, until now, Belvedere has been, not surprisingly, the only brain injury program in the state that blocked KAC from presenting. The change in their stance is most welcome.

Neither I nor KAC is Belvedere’s enemy.

But this essay is not solely about the politics and power-play of things. It is also about my relationship with a group of remarkable people who attend Belvedere’s day programs. We worked together for years, and our bond, then and now, is deep-in-the-heart close. The forced end to our work together was not simply a brutal one for me emotionally and, for that matter, physically, it was a brutal one for the survivors. I know this because they’ve told me.

In fact, they were so upset then they got a petition together asking for my return and every single survivor signed it and presented it to the owner, John Mccooey. In response Mccooey, who I had for some time considered a friend, met with them and said, no, I couldn’t come back because of forces beyond his control, a excuse that is doubtful at best. About Mccooey: despite his brutal treatment of me in the end, were he hurt tomorrow I’d help him. Doesn’t mean I trust him, that would be something he’d have to earn back, but I’d still help him.

Mccooey back then told me Tim Feeney wanted me out and, by default, so did Pat Gumson and Bruce Rosen, the two New York State Department of Health officials who headed up the Traumatic Brain Injury Waiver at the time. I don’t know how much weight I actually give his excuse. It doesn’t matter though because Feeney has been rather right-sized, Pat Gumson has retired, and Bruce Rosen is working in another area for the DOH, and I’ve not been invited back. The main obstacle to my return was and is Mccooey and, I suspect, his somewhat misguided allegiance to a rather dysfunctional individual who heads up his substance abuse program, the same individual, by the way, who most actively demeaned survivors and denied them their rights.

I was recently asked (not by anyone from Belvedere) if I would be willing to facilitate workshops at Belvedere again. My answer revolves around what is always my focus in matters like this; what is the healthiest choice on the table for the survivors and for me. Were their a healthy way to go about it, I’d certainly consider it. But I would not consider it if I were to again be at risk for bogus accusations from the above referenced dysfunctional individual or anyone else for that matter. To give you an idea of what I’m talking about, I once apologized to Mr. Dysfunction for a misunderstanding and gently touched his shoulder. The next morning I learned that he’d gone scurrying upstairs like a whiney little brat to file a workplace harassment charge against me because I touched him! The charge was dismissed by the way (duh).

Anyway, it will be good to see these folks Monday. They already know, and perhaps Belvedere will figure out, that neither I nor KAC are anti-provider, not even when the provider is Belvedere. We are pro-anything that supports equal rights for all and legitimately helps people living with brain injuries achieve their maximum level of independence and we are against anything that doesn’t. As for my future with Belvedere let me just say: One day at a time.

Monday will be a good day. It will be good to see them and it will be hard to say goodbye.