Tag Archives: Belvedere Brain Injury Program

Ramblings From a Writer & Advocate

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My blog “pen” has been still for a time now and I am pulled back to this page because I feel a kind of welcome connection to the more than 1,500 people that read this blog every month. Any writer not humbled by that kind of attention is a fool. And, I’ve missed you all.

I’ve been fairly active. I’ve written three short stories recently and am, dare I say it, fairly pleased with them. I eyed the possibility of trading in my car for a new one and was reminded that if  you want honesty in your life, you’re not likely to find it in a car dealership.  But most on my mind, at the moment, is a recent presentation by several healthcare providers claiming to be experts in helping those who live with the dual challenge of substance abuse and brain injury. I don’t know all the players but two of the presenters were Albany-based Belvedere’s Brain Injury Program and Northeast Center for Special Care in Lake Katrine, New York.  One of the people from Belvedere explained that Belvedere’s counselors have sessions with survivors in their cars for privacy.

Those I talked to who attended were not only not impressed, they were horrified. Survivors of brain injuries were referred to as “those TBIs” – TBI stands for Traumatic Brain Injury – and one presenter said a survivor he knew had been a garbage man before his injury and so was probably special ed anyway.  No matter how you hold that disgusting observation up to the light, it is packed with bigotry. Survivors were talked about like they were products and, well, less than human.

Do these fools not realize that when you say all TBIs you’re spewing the same kind of bigotry as the voices who say all Blacks or all Jews or all Latinos or all gays or all lesbians? And don’t miss that the people who offered these presentations were picked by their company owners and leadership to represent their companies and, one would suppose, their views. Troubling, very troubling.

Anyway, it is good to be back. More soon. My best to you all.

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Living With Brain Injury – Part IV: Those Around Us

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When you face the challenge of a brain injury in life, there are several things you should be able to count, from those who love you and from those whose job it is to help you manage the injury: respect, equality, dignity, honesty and the best treatment available. What you do not deserve is disrespect, condescension, dehumanization, and dishonesty. Tragically, there is far too much of the latter.

Let me say at the outset that there a lot of things my state, New York, has right. It has a TBI (Traumatic Brain Injury) waiver, a form of medicaid reimbursement that provides services so some with brain injuries can live in the community and, in some instances, return to living in the community. There is no question that more people with brain injuries are living in the community as a result of the waiver.

However, there are problems, and while the problems might understandably call for finger pointing, finger pointing rarely gets us anywhere. The waiver is overseen by the New York State Department of Health. The TBI Waiver manual is a nice document, it says the person with the brain injury is the person who drives their treatment plan, or service plan as it is called in waiver parlance. Sometimes this happens, sometimes it does not. But the waiver is well thought out on this front.

What appears to be lacking in the waiver manual are regulations. There are guidelines for sure, but they are accompanied by a paucity of regulations, and that is troubling.

One thing I am sure of is this. For any therapeutic environment to be as effective as possible, it needs to be an emotionally, spiritually and physically safe place for the person getting the care. Key to this safety is, among other things, honesty. That the people who treat you or influence your treatment or the rules governing your treatment are who they say they are.

One problematic case that does call for finger pointing is the case of Timothy J. Feeney. Feeney has been a contract employee with the NY DOH for on or about 15 years and continues to refer to himself as Dr. Timothy J. Feeney when he is nothing of the sort. By his own admission, both his PhD and his Master’s Degree were obtained from Greenwich University, a non-accredited school that enriches countless diploma mill lists on and, I would imagine, off the web. On a resume of his provided to this writer by the state, Feeney openly lists Greenwich University. Greenwich U was a diploma mill that operated out of California and Hawaii until 1998 when it moved to Norfolk Island off the coast of Australia. It closed its doors and 2003. There is an Australian Government Alert available on the web that makes it clear Greenwich was not a recognized university in that country.

However, do not be quick to villainize the NY DOH in its entirety. Feeney’s contracts, also provided to this writer by the state, do not require he have any degree to head the neurobehavioral project for the DOH. One has to wonder who wrote the contracts? It is, I think, reasonable to assume that there are those in the DOH who are good and honest people who may inherited this hot potato.

The bottom line is this. Learning how to manage daily life when you live with a brain injury is hard enough. It becomes even harder when people aren’t honest with us. Any value they may actually have is entirely undermined once their dishonesty comes to light.

We Are Not Children, We Are Not Slaves: Living With a Brain Injury- Part I

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Discrimination denies people what they deserve – their freedom.

I have lived with a brain injury for nearly 20 years and have worked in the field for nearly 15 of those years. Raised in a civil rights family I am very much an advocate for every individual’s right to be who they are, in safety, with equality, in the world they live in. When I talk with survivors of brain injuries in this state and others, the number one complaint I hear is They treat us like we are children. Tragically this is true.

My injury was sustained when I was held-up and shot in the head at point blank range in 1984.

The dehumanization of people with brain injuries (of people with disabilities) is epidemic in scope. In too many instances those who live with brain injuries are treated by health care providers as chattel. Living things used to make money for the greedy. No matter how you hold this truth up to the light, it is a form of slavery: emotional, spiritual and physical slavery.

My state, New York State, offers what in common parlance here is referred to as the Medicaid Waiver. The waiver is a form of Medicaid reimbursement for healthcare providers who offer services to people with brain injuries who live in the community. While the lives of many brain injury survivors has improved as a result, the lives of many on the waiver have been turned into a form of community-based incarceration.

This is not a situation that calls for broad brush strokes. There are waiver providers in this state who, in my view, do an extraordinary job. The Cortland Community Re-Entry Program in Cortland and Living Resources in Albany are two superb providers. Others, like the Albany-based Belvedere Brain Injury Program is not even close to its website’s claim that it is “the Capital District’s leading traumatic brain injury community rehabilitation program”. An arrogant and unfounded claim if ever there was one.

to be cont’d

Breaking Mountains

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It is time to come alive again and break me some mountains.

It has been my history to take on what for me are formidable physical challenges in response to life’s meaner blows.

Many years ago for example I joined and went to the McBurney YMCA on 23rd Street between 7th and 8th avenues in New York City almost daily as a way of breaking free of a year’s seclusion. A seclusion I’d gone into after being shot up and held-up at gunpoint in a matter of months.

Years later I would run two marathons in two weeks as a response to my mother’s 1992 suicide. I am a slow poke and with six marathons under my belt I’ve never run one under five hours.

And then there was the 175-mile bicycle ride in 2003 and the 1,000-mile bicycle ride in 2004 to strike back at my own brain injury and give hope to any and all who’ve sustained brain injuries or been beaten-down in any way by life. I did those rides while working for the Belvedere Brain Injury Program based in Albany, New York. I am not linked to Belvedere anymore for reasons I won’t go into – for now – bit I can tell you I wouldn’t recommend the program to a cadaver, much less a living being.

The year 2008 was in many way one of the most brutal I’ve been through in a life that by any standard has had its fair share of brutal years. As I’m sure you, my dear reader know, when life knocks you down you find out quick and certain who your friends are and who are, well, full of shit.

For me 2008 and some of 2009 was cement-thick with depression. A kind of physical immobility took place, I had been frozen still by life, largely as a result of treatment inflicted on me by the above mentioned Belvedere, more specifically, its owner, John Mccooey. My days would consist of staying tucked under blankets, sitting at the computer trying to write, reading, watching movie after movie, and, other than a weekly workshop I would facilitate with some extraordinary people, and attendance at meetings linked to a 12-step program I belong to, that was a out it. The all of me had grown still.

Like a slave breaking free of chains and shackles, I have begun to break free in the past few months, so much so I plan on breaking mountains. Let me explain. Back when I was getting into the intense bicycle riding I named the task of reaching the top of a steep climb, breaking hills. I’d see a steep climb coming up and say, I’m breaking that hill.

And so it is with mountains. There is the 3500 Club in the Catskills, a club you become a member of when you climb all 35 of the 3,500 foot or more mountains in the Catskills. Four of them you have to climb twice, once in warm weather, once in winter. I began this quest a few years ago and plan on resuming it in three weeks.

Next, or maybe even along with, I will take a run at being a 46er, someone who has climbed the 46 highest peaks in the Adirondack Mountains.

I will call the task of reach summits, breaking mountains. Like I said, it is time to come alive again, and break me some mountains.

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