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.

NY’s TBI Waiver: A New Beginning? Maybe

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.

Reflections of an Advocate, September 17, 2010

Bigotry is inhumane.

For as long as far back as memory allows me I have always found it troubling when people were being treated inhumanely. This may explain why two of my childhood heroes were Dr. Martin Luther King Jr. and Geronimo. They still are heroes of mine. The hero list for me has grown since then. It now includes Elie Wiesel, Nelson Mandela, Gandhi, Frederick Douglass, Coretta Scott King, Dorothy Height, Father Mychal Judge and others.

Anyway, today’s reflections revolve around those moments all advocates face when you simply can’t believe the challenge you are facing is even there in the first place. For example, it boggles my mind that there is even a question about making sure polling sites are accessible to all. There is even a cluster of numbnuts who call themselves, I swear to God, the Lever Lovers. They seem to think  voting machines with levers are the only way to go, too damned bad if you are paralyzed. Boggles the mind, at least it does mine.

And then there were two moments this morning that boggled my mind in similar fashion.

First, I left a voice mail for Timothy J. Feeney asking why his company’s voice mail (call them yourself) has, for some time now, said they are under contract with the Department of Health whey they’re not and did he intend to continue to misrepresent his credentials to adults and children with disabilities.

Second, an email was sent to Maria Dibble, executive director of STIC (Southern Tier Independence Center) in Binghamton, NY, again asking her to explain why STIC, which is likely to be under contract with the New York State Department of Health for the Neurobehavioral Resource Project, plans to give the work to someone like Feeney.

There was a moment when I sat back, took a sip of my coffee, and shook my head. It struck me as somewhat unbelievable that any of us have to deal with someone prancing around pretending to have degrees they don’t have much less ask questions of a provider like STIC, that apart from this situation has a good reputation, why they plan to give work to the prancing ninny.

But, when I find myself shaking my head over perplexing challenges like these, I remind myself of the days people were made to ride in the back of the bus or drink and eat in specific locations because of the color of their skin. That was pretty unbelievable too.

So, the bad news? Bigotry marches on. Only bigotry would allow someone to think it is okay to be or to hire someone who is misleading an entire population of people.  The good news? Advocacy, including this advocate, marches on as well. I like my role models: King, Geronimo, Height, Mandela, Gandhi, Douglass, Wiesel.  Who might the role models for the bigots be? Maybe the likes of Bull Connor, Lester Maddox, David Duke, George Lincoln Rockwell, Adolf Hitler.

I like my role models better.

The First Brain Injury Summit – A Step in the Right Direction

While there are some difficult realities surrounding New York State’s Traumatic Brain Injury Waiver, all attendees at the first Brain Injury Summit held in Albany this week agree that the waiver is far more a blessing than it is a curse. Nearly 3,000 adults who live with brain injuries live in the community because of the waiver, and that is good news. There are also no plans to end the TBI Waiver. Deep breath all.

The summit was recorded and once I figure out how to post it online in its entirety, it will be posted. Transparency is critically important.

The attendees at this week’s two-hour summit, hosted by the Kahrmann Advocacy Coalition, pledged in no uncertain terms to work together to address the challenges now faced by waiver participants, providers and, not incidentally, by the New York State Department of  Health which deals with the perpetual pressures faced by any regulatory agency, particularly during hard economic times.

Those who attended the summit were (in alphabetical order) :

  • Marie Cavallo, president, Brain Injury Association of NY State
  • Bill Combes, NY State Commission on Quality of Care
  • Karina Davis-Corr, Providers Alliance
  • Peter S. Kahrmann, Kahrmann Advocacy Coalition
  • Mark Kissinger, Deputy Commissioner, NY State Department of Health
  • Sandra Ryden, Kahrmann Advocacy Coalition
  • Mary Seeley, acting Executive Director, Brain Injury Association of NY State
  • Joe Vollaro, Providers Alliance

While I can’t and won’t speak for the others at this meeting, I can tell you that discussion was wide ranging, direct, deeply respectful on all fronts, and serious. It was and is not lost on any of us that there are real financial pressures on everyone that are not of our own making.

I did say that they number one complaint I hear from people who live with brain injuries (and people with disabilities of all kinds) is we get treated like we are children, and in some cases like we are barely human. Part of the reason for this is a rather global lack of understanding about the brain and brain injury thus putting the most well-intentioned among us in the untenable position of having to make choices and decisions while not fully understanding the role the brain injury is playing in the person they are working with.

I also said, and all agreed, that there were no villains at the table, and this includes the DOH, the most commonly villainized of all. The DOH is like any other large entity. Some of its workers are great, some aren’t. 

As a result of the summit the Providers Alliance will begin to meet with the DOH at a cadence both parties agree on, and that is good news all around.

I am not going to go into a slew of details at this point. But I can tell you this, and if you know me or know of me you’ll know this is true, I genuinely felt everyone at the table truly gave a damn. If I did not feel this way, I would tell you.

I would be remiss if I did not also mention that I raised the subject of Timothy J. Feeney being only “moments” away from being part of the neurobehavioral project again, a disgraceful and despicable reality no matter how you hold it up to the light. However, the “hands” that manipulated the course that is poised to allow a clinical predator like Feeney back into the mix were not at the table. It is not yet clear who pulled the strings, but it will be. Trust me. It is just a matter of time.

One piece of Feeney-related good news that came to light at the summit is this: waiver providers are free to choose not to work with Feeney. Therefore, providers who do choose to work with him are, by default, acknowledging they don’t truly give a damn about the people they serve.

The next summit is scheduled for December 10, 2010.