Category Archives: Brain Injury Association

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

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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.

 

Tim Feeney, John Mccooey & NY State DOH

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Sources say Belvedere Brain Injury Program owner John Mccooey may be behind an effort to get Tim Feeney another contract with the New York State Department of Health to again oversee the Neurobehavioral Project for the state.  State officials are looking into the matter. Belvedere has sites in Albany and Syracuse.

Tim Feeney had three consecutive five-year contracts with the NY DOH to oversee the Neurobehavioral Project despite the fact his doctorate and masters degrees are bogus, not recognized as valid anywhere in the world. In his last years under contract, Feeney and Mccooey worked closely to develop a substance abuse program for Belvedere that, sources say, continues to deny participants choice and in some instances locks the doors when workshops begin, telling participants they will not be allowed back in if they have to use the bathroom or go for a drink of water.

Feeney is currently under contract with the Fort Ann School District in Washington County New York  to work with children, including children with disabilities and is again representing himself as Dr. Feeney or Tim Feeney PhD. School officials, including Fort Ann School Superintendent Maureen VanBuren, have been told about his bogus degrees but it seems they are continuing to work with Feeney anyway, the welfare of the children be damned.

Some Background

On more than once occasion I have been asked what led me to investigate and  Feeney’s credentials, or, as it turned out, his lack thereof.  Some think it is because when I was forced out of Belvedere, John Mccooey said Feeney made him do it. First of all, by the time Mccooey told me that he had about as much right to claim the mantel of honesty as Willie Sutton had to a job as bank manager. Mccooey’s finger pointing at Feeney is not what led me to investigate the on again off again rumors that Feeney’s credentials were, in a word I feel comfortable using in this blog, bullshit. What led me to investigate his credentials was a change in his, Feeney’s, pattern of behavior.

One of the things they teach you in behavior management is that a change in a person’s common behavior pattern means something. In 2007 it had become clear that my advocating for the rights of those participating in Belvedere’s Albany substance abuse program was going nowhere. Participants were being talked to in degrading ways by Belvedere employee Michael Loiselle, they were being denied choice as provided for in the regulations and in their rights as human beings, and John Mccooey was doing nothing about it. At the time I had a close relationship with Pat Green Gumson and Bruce Rosen in the Department of Health. I reached out and let them know that there were real problems and something needed to be done. Feeney and his crew were sent in to deal with the problems. Historically, when the DOH caught wind of participants being denied their rights, they corrected things. Not this time.

This time the punitive rights-denying behavior of Belvedere was supported. There had been a change in Feeney and the DOH’s  normal pattern of behavior.

And so now we are looking at the possibility of Feeney being reinstated and a dysfunctional company owner named John Mccooey being involved.

Equal Rights Will Prevail

Yes, it is disheartening to encounter people like Mccooey and Feeney who apparently see people with disabilities as a way to make money and make themselves feel big and strong (both men are wimps, by the way). But do not give up. There are in fact, some good people in the New York State Department of Health and there are some truly good people in the advocacy community who offer more than simply lip service to the cause of equal rights. I can tell you that in those rare moments when I get down, I remember Mandela, King, Elie Wiesel, Simon Wiesenthal, Rosa Parks, Gloria Steinem and countless others; God knows they paid heavier dues than I have. So no, I will never give up and I hope you won’t either.

Make Your Voices Heard

If you share my concerns you can make your voices heard by calling the complaint line at the Brain Injury Association of NY State – 518-459-7911 – the Commission on Quality of Care at 518-388-2887 or the DOH at 518-474-6580 or you can write to the Kahrmann Advocacy Coalition at kahrma1@gmail.com

Keep the faith.

____________________________

 

Equal Rights Needs No Competition

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Groups promoting equal rights should never be in competition with each other. The fight for equal rights needs and deserves as many honest voices as it can get.

I am most directly involved with promoting the equal rights of people with brain injuries, with their right to live in the most integrated setting.

Fortunately in my state there are some solid voices involved in this fight. The Brain Injury Association of New York State is the leading advocacy organization in the state;  the Providers Alliance is comprised of companies and individuals who provide services so some who live with brain injuries are able to live in the community: the Kahrmann Consumer Advocacy Coalition is a statewide coalition founded by and run by survivors and their families;  the Brain Injury Coalition of Central New York is comprised of an extraordinary group of survivors, family members and health care professionals; the National Brain Injury Foundation in Utica brings hope and empowerment to survivors and their families; the Traumatic Brain Injury Services Coordinating Council (TBISCC) was formed by an act of the New York State Legislature to advise the Department of Health regarding service needs of persons who have sustained a traumatic brain injury, and the New York State Department of Health and the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities.

Given a recent productive meeting between the KCAC and Mark Kissinger, deputy commissioner for the New York Department of Health and his staff,  along with my knowledge and experience of those in all of the aforementioned groups, New York State is blessed to have them all and very much needs them all. There is no such thing as too many groups working for the right of all survivors of brain injury to live as independently as possible in the most integrating setting as possible.

The KCAC will be meeting with the Mr. Kissinger and his staff again in the next few months and has already reached out to the Brain Injury Association of NY and the Providers Alliance for a meeting. Moreover, we are already talking with both the NBIF and the BIC of Central New York. What is true about those in all the groups mentioned in this missive – including the DOH for those who may doubt it – is everyone’s heart certainly appears to be in the right place.

I hope and pray all of us are wedded to my favorite definition of humility – humility isn’t thinking less of yourself, it is thinking less about yourself  – and  join together, work together, and urge each other on. If any of us get caught up in the destructive winds of competition and ego, we hinder the very thing we are all really about – equal rights.

This is not the life path I was on when I was shot in the head 1984. I was writing, driving a New York City cab, and pondering a career as a paramedic. But the squeeze of a teenage finger changed all that. And so here I am, connected to some wonderful people and some wonderful groups throughout this state.

And so we keep on moving, one day a time, humble and humbled up, which is at it should be. Life happens to us whether we like it or not. It does not go on forever, so let us all join together and work  heart and soul to make the world a better place for all people. And that includes each other.

_____________________

Caring for Appearances and $ Only

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I have lived with a brain injury for more than 25 years now as a result of being held up and shot in the head in 1984. Since then I have met people who care and don’t about those of us who live with brain injuries. I’ve also met those successfully manipulate many, myself included, into believing they do care when in fact they don’t.

I can tell you from firsthand experience that those who work for the Brain Injury Association of New York State care with all their hearts and souls. They have helped me through some tough times over the years and I can honestly say I love the people who work there. I am proud to be a member and would tell anyone who lives in New York they are making the world a better place by becoming a member.

I know people in the New York State Department of health who care with all their might. I recently met with two DOH official who care and then some, so be careful not to write off government agencies and or employees as being absent compassion and caring. Moreoever, I know healthcare providers in my state and other states care with all their might.

I also know healthcare providers who don’t care. Who see us as a means of making money and or as a means to inflating their dysfunctional egos by seeking to and, in too many cases, succeeding in controlling our every move.

In my years of working with people with brain injuries I have worked with two company owners who both put on quite a show of caring. One, who has since passed away, I’ve come to realize really did care. Sadly, very sadly in fact, his personal demons got in the way of his acting on his compassion in a healthy way. The second owner continues to put on quite a show of caring but in fact continues to operate a program in which participants rights are too often not respected.

I was forced out of the latter owner’s place because I would not be quiet when I saw people with brain injuries being denied their rights. Do I hate this owner or the one referenced earlier? No. I hate the latter’s behavior and feel sorry for the arrogance that blinds him to the fact life happens to him too whether he likes it or not – just like the rest of us. Were he wounded in life, I’d help him.

Anyway, one day at a time.

I’ll continue to expose those who misstep on the human rights front and support those who don’t, and, thankfully, there are many people in the latter group.

The Cost of Advocacy

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Before I get started here, let me say that nothing but the end of my life will stop me from advocating for every person’s inalienable right to equal rights. Okay, now that we’ve got that out of the way, let’s begin.

It was early 2008 when I found myself in the Hannaford Supermarket talking with my friend, Eric. It was not long after I’d had all my workshops for brain injury survivors slammed to a halt and my income removed on a dime because, in short, I would not turn a blind eye or remain silent when witnessing people with disabilities, in this case brain injuries, being denied their rights and treated as if they were nothing more than wayward children.

“How you doing?” Eric asked. Eric, I should say, is someone I worked with for years and a man I genuinely love like a brother.

“I’m alright,” I said, “When I get really down I think about King and Gandhi and Medgar, and given the fact they were assassinated, I’m not doing too bad.”

“Sounds like you were assassinated,” Eric said. In a way, I knew he was right. I also knew I was alive and could and would continue advocating for people being denied their equal rights.

During this time I’d begun looking into rumors that a man who headed up a neurobehavioral project for the New York State Department of Health did not have the credentials he said he did. In time the investigation would reveal the rumors were true, he was claiming to have college degrees he did not have and had been presenting himself as this in his job for the state and in his private professional work for well over a decade.

Now the thing about investigations, an honest following of the facts, if you will, is sometimes what gets uncovered bruises people you like and care about and or leads you to discover people you thought were totally honest and honorable were not that at all. If you are wedded to the truth, you keep going, because, if you are an advocate, you know your work is not about you, it is about the ongoing effort to make sure all people are given their equal rights, period.

I lost a friend as a result of the above referenced investigation. A man who was, in my view, one of the best and most seasoned advocates I know. Still is, I am sure. However, people he cared about were wounded as a result of what I uncovered. I can’t help that and certainly didn’t intend that. I also can’t help where the facts led. If people knowingly took part in a process in which survivors of brain injury, their families, and healthcare providers were being misled, there are consequences. Can’t and won’t help that either.

But here’s the thing. The pain or wounding I’ve endured and the pain and wounding my honorable friend endured are nothing in comparison to the pain and wounding people with disabilities live with day in and day out when they are being treated like they are little children or being denied their equal rights. Which is why I will keep on advocating and I know my friend will too.

For those wondering who my friend is, I will never tell you. Why? Because he is a good and honorable person who, like me, is imperfect, and I’ll be damned if I am going to wound him because a moment came along in his life when his loyalty to a misguided person he loves blinded him to the greater good on the advocacy front. After all, like me, he is only human, and is allowed the imperfections that come with that condition. After all, he has equal rights too.