Next Book: Brain Injury

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.

 

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The Danger of Silence

There is little doubt silence has played a significant role in enabling the the denial of civil rights to, not just brain injury survivors, but all people with disabilities.

Rarely does main stream media so much as lift its pen to speak out on the dysfunction and, yes, moral corruption, that, to focus on the group I currently pay closest attention to, people who live with brain injuries.

The troubling silence of the main stream media is, sadly, not surprising, and perhaps that will change in the near future. What is far more troubling is the number of voices from within the world of brain injury that remain unheard. Voices on both the advocacy and provider front.

Yes, there are survivors and family members who remain silent, but I can tell you their silence is, more often than not, driven by fear of very real threats.

And the excuses for the silence boggle the mind! Take the fact Timothy J. Feeney continues to misrepresent his credentials to brain injury survivors, children with disabilities, their families and more. Someone I like and respect recently said, while referencing the contract the New York State’s Department of Health essentially handed Feeney despite knowing of his deceit, “Well the contract doesn’t require” he have a masters degree and PhD, as if somehow this fact negates the need for any advocate or advocacy group worth an iota of merit to confront that fact the man misrepresents himself to vulnerable human beings.

Then, of course, you have the NY State Department of Health who has not only handed the reins back to Feeney but has taken steps to undermine the rights of brain injury survivors in Medicaid Fair Hearings has been met with silence in some advocacy quarters as well.

There is no excuse for silence when people are being denied their civil rights. My patience with some who remain silent is beginning to run out.

 

The TBI Waiver: It’s All About Money….Duh

Most of us grew up hearing the phrase actions speak louder than words. It’s true. But then I suspect you knew that already.

And so it is with the New York State Traumatic Brain Injury Waiver. Actions speak louder than words. And the actions say the concern on the part of state’s DOH is money, not the nearly 3,000 human beings living with brain injuries currently on the waiver.

If you talk to people in New York State’s Department of Health they will tell you how they care about brain injury survivors and how the waiver is the best in the country (if this latter point is true God help those on the other waivers). During a recent meeting Carla Williams praised the quality of the waiver with a kind of manic vehemence. Ms. Williams is the DOH’s deputy director in the Office of Long Term Care. Ms. Williams was also the one who voiced the smile-producing and not particularly prescient complaint that the content of this blog is my interpretation of things (Note: I am proud to say I successfully resisted the temptation to ask her exactly whose interpretation she’d have me use).

Very few people and very few systems, if any, are all one thing. The DOH officials who formerly oversaw the waiver, Patricia Gumson and Bruce Rosen, the former retired, the latter reassigned, certainly had their issues. All indications are they both knew Timothy J. Feeney’s educational credentials were bogus and they were, upon reflection, rather cliquish in the way they sailed the ship, insular too. And they are and deserve to be held accountable for all this. However, in all my interactions with the two over the years both gave a genuine damn about the brain injury survivors on the waiver. And, if you asked them questions, they answered you. Not like the current crop who hide behind the walls of silence and cower under the cloak of non-responsiveness.

As for the assertion its about money not about people just watch the bouncing ball, the way brain injury survivors are actually treated, you tell me. Survivors across the state are having their services cut and in far too many cases are being disenrolled from the waiver altogether.

As for the DOH’s genuine commitment to fairness during Medicaid Fair Hearings, a venue in which a participant can challenge a DOH ruling, consider this. Reliable sources say DOH official Maribeth Gnozzio, she oversees the RRDSs across the state, instructed said RRDSs in a monthly conference call that those working for waiver providers are to side with the DOH  and against the position of the brain injury survivor at the Fair Hearing. Email requests to Ms. Gnozzio and her colleagues asking for confirmation of this one way or another have, no surprise, gone unanswered.

Think about this, the largest survivor-led coalition of brain injury survivors in the state asks for confirmation and gets ignored. Remember, actions speak louder than words. If they gave a damn about the survivors would they ignore queries from a survivor led coalition? You tell me.

And then, think about the directive. Imagine a brain injury survivor who asks for a fair hearing and deals with expressive aphasia. Expressive aphasia hinders the person’s ability to speak their thoughts (which are as sharp and cohesive as ever) as fluidly as they did before the injury. Talk about stacking the deck against the person with the disability! And, if the survivor loses and the state wins, the state spends less money and the hell with the survivor.

As if all this weren’t enough, consider the structure of the waiver’s complaint line. To file a complaint you must call the Brain Injury Association of NY State. I can tell you from firsthand knowledge you will be treated with kindness, compassion and respect by BIANYS staff. But BIANYS is merely the conduit for the complaint. They write it up and forward it to the DOH. The complaint line protocol (provided at the end of this essay in full) not only fails to provide a timeline in which the DOH must respond to the complainant, it doesn’t require the DOH to respond to the complainant at all!

This, of course, violates the participant’s rights section of the DOH’s own TBI Waiver Manual which reads, in part, that a participant will be “treated as an individual with consideration and respect” and violates the  manual again when it says participants must have their “complaints responded to and be informed of the resolution”.

Like I said, actions speak louder than words.

I filed a handful of complaints this year starting in March. I finally received the following letter from the DOH. It is dated November 5, 2010. It reads as follows.

Dear Mr. Kahrmann:

Please be advised that representatives of the Department of Health (DOH) have completed their investigation into the allegations you presented in your complaints to the Brain Injury Association of New York State (BIANYS) Complaint Line. A review of a series of emails and complaints going back to March 15, 2010 and most recently as August 30,2010 was conducted and a full investigation completed.

Please be assured that these issues have been appropriately addressed with all involved parties and no further investigation on the part of DOH is warranted at this time. DOH considers the investigation to be closed.

Sincerely,

Lydia Kosinski

Assistant Director Office of Long Term Care

cc: Mary Ann Anglin, Director

Like I said in the prior blog post. The DOH achieved the remarkable feat of putting words on a page and still the page is blank. Setting aside it took them eight months to respond, the response provides no clarity insofar as the investigation’s findings are concerned, none whatsoever. Would they say there response, as their manual mandates, treated this participant “with consideration and respect” ?

I am not and the Kahrmann Advocacy Coalition is not the only party that gets lip service from the DOH. The state’s Providers Alliance comprised of about forty waiver providers has done yeoman’s work putting together a package of suggestions and, like KAC, has again and again signaled a willingness to sit down and work with all parties.

We all would still sit down and work with the DOH anytime. But there needs to be sincerity on all sides, not just lip service and spin. A place to start might be the TBI Manual. Sources across the state say the DOH is rewriting the TBI Waiver Manual (again it refuses to confirm or deny this). If so, then they would be wise to ask for the input of all parties: brain injury survivors, families, healthcare professionals, the Provider’s Alliance, KAC, BIANYS, the Brain Injury Coalition of Central NY, the CQC and more.

To invite input from all parties would send a clear signal that the DOH is truly working for the benefit of brain injury survivors. To remain insular and wall parties out simply underscores what is becoming increasingly clear to all, it’s only about money. If they really cared, they’d be including all the aforementioned in the manual-writing process because we are the ones who know firsthand the challenges faced by those of us who live life with a brain injury – like me.

As promised:

TBI Complaint Line Protocol – Updated 1/2010

1. BIANYS conducts complaint intake and completes the BIANYS portion of the complaint form.
2. BIANYS emails complaint to DOH TBI Waiver Program.
3. DOH staff emails the complaint intake form to RRDCs. (If determined a Serious Reportable Incident, DOH staff contacts RRDS immediately by phone and check the appropriate SRI box on the form. DOH staff will follow up by emailing the complaint intake form to RRDS.) In those instances where the complaint is directed at the RRDC, DOH assumes responsibility to investigate.
4. RRDC confirms receipt of the complaint with DOH.
5. RRDC staff contacts the participant within two business days that the complaint has been received and investigation is in process.
6. RRDS investigates the complaint and completes the RRDS portion of the complaint form.
7. RRDS returns the completed form back to DOH within 30 days.
8. BIANYS will be notified when the complaint is closed via email.
9. BIANYS will provide DOH a monthly report of complaints.
10. DOH waiver staff meets monthly to review open complaints & discuss
outstanding issues.

Essential Elements of RRDC Investigation

a) Provide a brief description/summary of the complaint.
b) Provide pertinent demographic information of the participant and any other people related to the complaint.
c) Provide a summary of all completed interviews or statements of fact.
d) Provide a summary of documents and any evidence reviewed.
e) Provide a description of your findings and analysis of the event.
f) Describe all corrective actions taken.
g) Describe the current status of the complaint and/or participant and any conclusions indicated by the investigation. The Complaint Form must indicate the final status and disposition of the complaint e.g. allegation/complaint confirmed/substantiated, allegation disconfirmed
h) Complaints are to be maintained in a regional and DOH database and reviewed on an annual basis to establish trends, patterns and systemic issues.

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.

 

NYSARC & Feeney: the Corruption Continues

One has to wonder what St. Lawrence NYSARC is thinking about by inviting Tim Feeney to present at an upcoming conference on brain injury. St. Lawrence NYSARC his he is not a PhD yet accepting the fact he represents himself as such.  The brochure lists Feeney as “ the Clinical Director of the New York Neurobehavioral Resource Project at STIC (Sothern Tier Independence Center in Binghamton). The clinical corruption with a hefty incestuous streak becomes clearer by the day.

Feeney, as you may recall, was issued  a bogus “masters” degree as well as a bogus “PhD” by the now defunct  diploma mill, Greenwich University.

Consider this.

  • Emails to Maria Dibble, the executive director of STIC from the Kahrmann Advocacy Coalition, founded by and run by brain injury survivors and their families, the very people STIC and Feeney claim to care about, have simply been ignored.
  • Despite being fully informed about the fact Feeney does not have a valid PhD or a valid Masters degree, STIC appears to be perfectly comfortable with his misrepresenting himself, which does not say much for either’s opinion of survivors of brain injury and their loved ones, nor does it say much for their respect for the honest health care providers who are battling under great financial strain to provide the best services.
  • As for the hefty incestuous streak, add up the following facts:
    • Pat Gumson, the former DOH employee who, along with Bruce Rosen, oversaw the state’s TBI waiver, used to be a STIC employee.
    • This will be the second time STIC has, for all intents and purposes, acted as a front for Feeney.
    • The State Education Department oversees Independent Living Centers in the state. Who is the State Ed’s manager of the state’s ILCs, Robert Gumson, Pat Gumson’s husband.

What you can be sure of is the days of this corruption are numbered. I am not at liberty, yet, to disclose why this is so, but it is.  In the meantime, the tragedy is that a clinical predator like Feeney is enabled by the likes of STIC and others and this simply underscores what many of us who live with disabilities deal with on an all too regular basis; the message that somehow we are less valuable than others.