Category Archives: TBI Waiver

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.

NY State DOH Sinks Lower

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I’m not the first to think someone couldn’t sink lower only to be proven wrong. In my Medicaid Fair Hearing today the New York State Department of Health, represented by RRDS’s Maria Relyea and Robert Korotitich, proved they will sink as low as it takes  to prevent a brain injury survivor from getting the support he or she needs, and they’ll mislead and change the rules as they go to serve their purpose.

Today was the Medicaid Fair Hearing I asked for because the DOH denied my request for a life alert and three white noise machines.

Let’s review. All parties agree that the subject of my getting white noise machines to help me manage a marked sensitivity to sound and a life alert was first raised in March 2010, nine months ago. By June of 2010 all documentation was in and we, my case manager and I, were told the letter from my therapist supporting my request was enough. Months pass with no news and then the DOH changes its mind and says the therapist letter is not enough, we need a letter from a medical doctor. A letter from a medical doctor supporting me was provided.

On October 4 – seven months after the request was first made and four months after all the paperwork was in – I received an email from Rob Korotitich saying all the documentation I needed to justify my request was in, they were approving it and sending it on to DOH for signature.

In late October I receive notice that DOH has denied both requests.

Then, on November 10, I have a pre-conference with Relyea, Korotitich and my service coordinator, a remarkable person named Jessica Pakatar from Catholic Charities. A pre-conference is a standard way for parties to meet and try and resolve differences which would negate the need for a Fair Hearing. In the middle of the conference Relyea and Korotitich announce they didn’t realize it was the pre-conference (despite their having confirmed they were attending the pre-conference in response to an email I’d sent them two days earlier on November 8). However, in this meeting they said if I fully explained my medical condition it may help get the life alert request approved and if I had more evidence of my sound sensitivity it might help on the white noise machines front.

And so we provided yet another, far more extensive letter from my doctor, one that detailed the brain injury, chronic asthma and a heart condition and mentioned the fact I live alone in a rural area. We provided letters from people who know me and have witnessed firsthand my struggle with sound sensitivity. We provided documentation from the Mayo Clinic and the Arizona Center for Advanced Medicine documenting the prevalence of sound sensitivity in brain injury survivors as well as documentation from a military site talking about the prevalence of sound sensitivity when there is the combination of brain injury and PTSD. Moreover, Kristin Weller from the Brain Injury Association of New York State was there and provided an overview of the prevalence of sound sensitivity in brain injury survivors.

All this was not enough to satisfy the DOH. Maria Relyea, who lost all my respect for her today,  said the life alert had to be tied directly to the brain injury and that the other medical conditions were not relevant because I’m on a brain injury waiver. I asked her why the DOH had waited until now, the Fair Hearing, to make this point and why hadn’t she made this point during the pre-conference? No answer.

She went on to say that even with all the new sound sensitivity evidence provided there still wasn’t enough justification for the sound machines. There should be an assessment made, she said (never mind they’ve been provided three assessments, one by my therapist and two by my doctor). Once again she was asked by me why they’d waited until now to bring this up?  Now they wanted some kind of assessment, the specifics of which Relyea could not identify, even when asked to by the judge.

Then, Relyea questioned the need for three white noise machines (which had been explained in the letter from my doctor as being needed for different areas of the house). We think that might be a duplication of services, she said, which no doubt got her the prize for achieving the most juvenile and asinine moment of the day. Bad math too. To follow up on the asinine reasoning trail, it would be tripling the services, not doubling. It’s three machines, Maria, not two.

Christine Waters, the attorney for New York State’s Commission on Quality of Care,  accurately pointed out that the DOH was just raising the bar every time we met their requests.

I’ll be notified of the Fair Hearing results by mail in a few weeks.