Category Archives: TBI

Next Book: Brain Injury

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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.

 

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

The Danger of Silence

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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.

 

Memo to Survivors & Providers: Shine the Light!

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If I have learned one thing I have learned that the New York State Department of Health hates publicity. They hate it when their actions are brought into the light of day. And so, given their reluctance to change their clearly punitive behavior towards brain injury survivors, their loved ones and, not incidentally, those who provide services to same across the state, I am urging all of the aforementioned to openly share their stories. Don’t embellish and certainly don’t lie. Simply state the facts of the matter as you honestly know them. The facts speak for themselves.

In yesterday’s Fair Hearing it was crystal clear that the DOH, represented by RRDSs from the Capitol Region, were looking for any excuse to deny my request for white noise machines and a life alert (see preceding blog post). Not only was the tone of their stance, voiced primarily by RRDS Maria Relyea, venomous, it was rooted in a willingness to change the rules at a moment’s notice simply to wound the survivor, in this case me.

Across the state the DOH is looking to jettison people off the traumatic brain injury waiver or, if not that, cutting their services so drastically life becomes even harder for the survivors. I can tell you that living life with a brain injury is not so easy a task in the best of circumstances.

A DOH Trap for Providers

The DOH has also set what might be called a trap for providers. If they don’t tell the provider outright they can’t support their client at a Fair Hearing, they’ll tighten the purse strings by telling the provider if they do appear at the Fair Hearing on behalf of the participant they won’t get paid. A nasty form of manipulation. What’s the trap? Some providers are playing the you need to subpoena us to appear with the participant card. If they are subpoenaed they’re paid, and they should be. However, by playing hat card they walk full length into the DOH’s penchant for accusing providers of being in it for the money. So while the urge to play the subpoena card is understandable, strategically it is a blunder, albeit an understandable one.

Shine the Light

What providers and all others should do when encountering this behavior is  publicize it. Let local, state and national media know. Start a blog, start a web page, or post it on the web page you have. It’s okay to be afraid but don’t let it scare you.

Whatever your political walk of life, there can be no arguing that President Obama was right when he said, “Sunlight is the best disinfectant.”  And if there is anything the behavior of the DOH needs when it comes to the facts just mentioned, it’s a hefty dose of disinfectant.

Shine the light.

How Do They Sleep at Night?

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One wonders how some who work for the New York State Department of Health manage to sleep at night. Not all who work for the DOH mind you, but some.

There are reports, reliable ones folks, from around the state that make it clear there is a sustained effort underway to cut Medicaid spending, the carnage inflicted on the lives of brain injury survivors be damned. As this blog has reported, reliable sources say the DOH has directed that those individuals who work for waiver providers, companies and individuals in the state who help brain injury survivors live in the community and grow their independence, are to side against the survivors they work with and with the DOH if those survivors ask for a Medicaid Fair Hearing to challenge some DOH ruling that, of late, means they are either disenrolled from the waiver or are having their services cut.

One wonders how Maribeth Gnozzio, whose never met an email or phone call she can’t ignore, sleeps. She’s ignored queries from this writer (and brain injury survivor) whether those queries were about my own case or about the treatment of brain injury survivors across the state. When I had what I’d thought was a pre-conference before my Fair Hearing, scheduled for December 1 next week at 1 p.m., she didn’t bother coming even though the two RRDSs (actually one is an assistant RRDS but what the hell…) said they couldn’t change any decision – the DOH had your request for a Life Alert and white noise machines not us – because I, not they, had failed to ask them to invite someone from the DOH. I explained to them that since they are DOH contract employees they were the ones who should have invited a DOH person (I’m using the word person loosely here).

Incidentally, I asked the two RRDSs (Maria Relyea and Rob Korotitich), who claimed they didn’t realize the pre-conference to the Fair Hearing was the pre-conference to the Fair Hearing (I know, I know…I wouldn’t believe it either except I was there and they really claimed they didn’t know..Scout’s honor, that’s what they said) if we could maybe have another pre-conference and this time would they bring someone from the DOH. They dragged there feet on this and then offered a pre-conference date of November 29th before we all agreed that was silly since the Fair Hearing was December 1 and they – meaning the DOH – wouldn’t have time to review any new material I provided. I asked them if they had planned to bring someone from the DOH on the 29th and they said no, the DOH had given them permission to represent the DOH, which is exactly what they are contracted to do in the first place.

As for how people like Gnozzio and her ilk sleep, I imagine they sleep well. I say this because only people with a conscience would find sleep difficult because they treated people with disabilities like they are non-entities. But given that Gnozzio and those other DOH folks copied on the emails sent to her don’t respond, they seem to have no conscience.

Oh, I’ve asked that Gnozzio, who, according to the two RRDSs just mentioned,  was a significant player in the decision to deny my assistive technology request, be present at the Fair Hearing.

If I were a betting man, I’d feel quite comfy betting she’ll be a no show. She and those like her will either be hard at work denying people like me our rights, or they’ll be sleeping.

Afterward

Lest anyone think I’ve been unduly harsh here, consider the following two examples followed by an observation:

  • The DOH is making a concerted effort to make it as difficult as possible for people living with brain injuries to be successful in a Fair Hearings. It’s not simply that they are either flat out telling waiver staff, who more often than not pour their hearts and souls into their work, that they can’t support the brain injury survivors they work with at the Fair Hearing, they are leaving brain injury survivors, many of whom deal with memory deficits, communication challenges, organizational challenges and more, to fend for themselves in the hearing.
  • I’ve had reports from one area of the state that RRDSs have told survivors that if they continue the services the DOH wants to cut from their lives until the Fair Hearing (something they have a right to do) and then lose the Fair Hearing, they will have to pay back every penny themselves. This threat leveled at people on fixed incomes that are so low they are anything but fixed, unless of course you mean the fix is in, is vicious and ruthless. This threat so terrifies survivors they opt out of Fair Hearings. This threat is nothing more than an intimidation tactic on the part of DOH.
  • The Observation: Someone I deeply respect recently reminded me that RRDSs are often the signatures on the page that bears the bad news for the brain injury survivor, not the author of its content. True. However, the person who is the RRDS has accepted a job in which he or she is willing to go along with denial of rights and intimidation tactics  and so as far as I’m concerned, they’re just as responsible as whoever authored the page. Hell, if simply being a side-line player in a work environment where survivors were being denied their rights was morally acceptable, I’d still be working with the Belvedere Brain Injury Program, and I’m not. I can’t speak for others or tell others how to manage their moral compass, but there is no job position or amount of money in the world that has the power to make me take part, directly or indirectly, in denying people their rights.