Monthly Archives: January 2011

NY State’s DOH Dysfunction Continues

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There is no doubt New York’s new governor Andrew Cuomo has his work cut out for him in his push for ethical and accountable behavior on the part of state employees and state agencies. Evidence of the widespread dysfunction is certainly on display in the response I received in yesterday’s mail  to a FOIL (Freedom of Information Law) request I filed on December 12, 2010 seeking documents from the state’s department of health.

The December 12 FOIL request asked for the following (quoted directly from the request itself):

– Any and all policies and procedures and any and all emails or other forms of written or recorded communications that are related to Medicaid Fair Hearings.

– Any and all policies and procedures and any and all emails or other forms of written or recorded communications that are related to the state’s traumatic brain injury waiver, the RRDCs ( Regional Resource Development Centers) and RRDSs (Regional resource Development Specialists) and assistant RRDSs and their role in Medicaid Fair Hearings

– Any and all policies and procedures and any and all emails or other forms of written or recorded communication that are related to directives from DOH (and or contract employees of DOH) that relate to TBI Waiver providers and their role in Medicaid Fair Hearings

– Any and all information that relates to DOH Policies and Procedures that apply to Medicaid Fair Hearings

And what arrived in yesterday’s mail as a response, a slim binder used to training fair hearing officers. A disturbing and seemingly disingenuous response to say the least. Upon reflection here is what is far more disturbing; I wasn’t surprised.

I’ve filed another, far more specific, FOIL request.

Stay tuned.

Getting Shot in the Head

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I was 30 years old in 1984 when a wild-eyed teenager put a gun to the left side of my head and pulled the trigger. The bullet went through my skull in front of the left temple, tore a path through the left side of my frontal lobe before coming to a stop in my right frontal lobe. Bone spray was blasted into the left side of the brain.  I underwent brain surgery in which a large subdural hematoma was removed. The wound was cleaned and the bullet was left where it was. Doctors knew  more brain damage would result if they removed it.

No one told me I had a brain injury and back in the day, this was the norm. Words like brain injury and traumatic brain injury and terms like TBI had not found their way into common parlance. My marching orders were, We’re going to put you on anti-seizure meds for the first year as a precautionary measure and no, you can’t play contact sports anymore. No one said I was living with brain damage. It would be years before I learned that mood swings and short tempers and bursts of anxiety were reflections of the damage done to my brain. It would be years too before I understood why some activities exhausted me and others did not.

Fortunately, for Gabrielle Giffords and others who sustain brain injuries today, some things have changed for the better in my country. Now there is an increased awareness of brain injuries, that the injuries themselves present a range of lifelong challenges. Brain injuries don’t get all better and go away. What has not changed, or, if it has, it hasn’t changed enough, is how people with brain injuries, meaning people with disabilities, are treated. Too often people with brain injuries (and other disabilities) are treated as if they are both less valuable and, in a very real way, less human than others. Nothing could be further from the truth.

When I hear of someone getting shot in the head and suffering brain damage as a result, I almost instantly think, Please don’t let anyone lose sight of them, meaning, let no one lose sight of the fact no matter damage, no matter the personality of the disability, the person is still there. The whole of their value and humanity is not diminished.

When I hear of people being shot shot in the head, it moves me beyond description and I feel an instant bond with the person who was shot. When the person has been shot in the head, there is a unique sense of connection. Over the years, I have known a number of people with gunshot wounds to the head, I can think of eight at the moment. I remember a moving moment in 2002 when I was standing outside on a sunny day talking with three other men, all of whom had been shot in the head. One of us, I can’t remember who it was, quipped, “Can you believe we’re all talking here standing up?” to which another said, “Hell, can you believe we’re all here?”

We were all shot in the head and we all live with brain damage. And that is the reality that Gabrielle Giffords is dealing with and will deal with for the rest of her life. As my closest friend in the world, Michael Sulsona told me that day after I was shot. “Remember, you control it or it controls you.” Michael knows. A former and always in his heart U.S. Marine, Michael lost his legs in Vietnam.

One of the unique rarely talked about realities of getting shot in the head is this. The head is the sanctuary from which we experience our lives. It is there that our thoughts and feelings are shaped, emerge, and have their say. Our heads are, in a very real way, the center of our universe. And so, when you are shot in the head, the very sanctuary from which you experience life has been ruthlessly invaded, and an ineffable form of deep-seeded vulnerability results. It is, for some, the toughest challenge of all.

Gabrielle Giffords will not function entirely the way she functioned before she was shot; there will be differences. The bullet went through the left side of her brain, home to the speech center, so there may well be differences in her communication. Only time will reveal the personality of the brain injury she is dealing with. Here is what we don’t need time to tell us for sure. Gabrielle Giffords is still Gabrielle Giffords; her humanity and worth is not diminished. To treat her as if she is less than she was before is to give the shooting, the brain injury and, for that matter, the shooter, far more control than they deserve.

We are not our injuries, we have relationships with them, we are not defined by them.

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Five weeks after shooting

Ethics Welcome (Needed!) in NY State

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New York Governor Andrew Cuomo’s directive that his staff along with top officials undergo ethics training is a breath of fresh air. There is nothing like fresh air to displace the pollution of unethical behavior, the stench of the latter being no more pronounced than it is in the way the state’s department of health manages the Traumatic Brain Injury (TBI) Waiver.

I can’t imagine the  governor will be at pleased when he hears the DOH and their contract employees continue to present Timothy J. Feeney as being Dr. Feeney or Timothy J. Feeney PhD. despite the demand for ethics from the new administration. In fact, I suspect he will be angry. And, in all likelihood, not surprised. As Bloomberg news recently reported,  “New York’s legislature has fought off efforts to require disclosure of the amount and source of their outside income and be subject to an independent commission with the power to monitor and enforce ethics rules” so the unethical behavior coming out of the DOH is not new news.

Recently, Joan Barbieri, Long Island’s lead Regional Resource Development Specialist for the TBI Waiver sent out an email to waiver providers telling them at their  “February 16, 2011 Provider meeting Dr. Timothy Feeney Program Director from the Neurobehavioral Resource Project at Wildwood Institute will be in attendance and discussing the program." Not only is he not a doctor (the only valid college degree he does have is a bachelors) he is also no longer connected to Wildwood. I sent an email to the providers letting them know the information they were given was false. While providers need to be ethical, they bloody well deserve honesty and ethical behavior from the others.

Additional emails have also been sent to the DOH, Barbieri, and Maria Dibble, the executive director of the Southern Tier Independence Center (STIC). STIC subcontracts to Feeney knowing full well he lies about his credentials. No response from any of’m. Let me end this missive here.  Thought it might be nice to end without a surprise.

Actions Speak Louder than Words

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Actions speak louder than words. A cliché. When I was a boy my father reminded me there are reasons clichés become clichés, and the reasons are often good ones, which I believe to be the case with actions speak louder than words.

As one who lives with a disability, in my case a brain injury, I am weary of the many who offer up words of advocacy and support for brain injury survivors yet when it comes down to standing up to those who deny our rights they do nothing.  In the world of brain injury there are all kinds of people in the profit and non-profit arenas who, when it comes to taking a stand for equal rights, fail miserably. Too many who claim to care remain silent when they know brain injury survivors are being denied equal rights, real quality care and support, meaning, in part, that those providing the care are qualified to provide the services they are being paid to provide, paid with taxpayer dollars no less!

And so it is that this year my eye will be on the actions versus words arena. When the actions don’t match the words, I’ll say so. Yes, I know, I will upset some. I don’t care. Why should I? The ones I’ll be upsetting are the ones spewing lip service. They  don’t deserve caring, not when the rights of others are being denied and their silence and inaction makes them one of the forces contributing to the denial those rights.

Everyone and every organization is fair game. I am overjoyed that my state’s new governor has made it clear ethical standards are a must and in some instances in this state, they are severely lacking. True that governor.

Rush Limbaugh: Our National Nut

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Though not surprising it is still disturbing that National Nut Rush Limbaugh would say Jared Lee Loughner, the man arrested for the shooting carnage in Arizona has the support of the Democrat Party, or any party for that matter. To be exact, Nut Limbaugh said, "What Mr. Loughner knows is that he has the full support of a major political party in this country. He’s sitting there in jail. He knows what’s going on, he knows that…the Democrat party is attempting to find anybody but him to blame.”

Like I said, words like this from Nut Limbaugh are disturbing given that most in the country of nearly all walks of political life agree it is high time to dial back the inflammatory rhetoric, if you care about the country that is, and it is clear to me that Limbaugh could care less about this country. He cares about fame, notoriety and money. Period. End of story.

What baffles me, though I suppose it shouldn’t, is the number of people that actually agree with Limbaugh. That’s where words and views utter by Nut Limbaugh become dangerous. And if there is anything the people of this country do not need or deserve, it’s more danger.