Tag Archives: TBI Waiver

A Short Story: The Heart of Sidney Chest

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Sidney Chest sits erect in his custom made Ermenegildo Zegna suit made by Mr. Kelly at La Rukico Tailors, joking that the blue dress shirt he has on is his least favorite but it was the only clean one he had left in his lambskin overnight bag. He has, after all, stayed over an extra night in the city of Patch Falls to help guide his company’s handling of those Sidney Chest refers to as my TBI people. TBI meaning traumatic brain injury, injuries sustained from a blow to the head, falls, assaults, car accidents, bicycle accidents and so on. Sidney Chest owns and runs a company that provides supportive services, or so they are called, to men and women who live with brain injuries so they might continue to live in the community rather than in institutions. Their injuries have robbed them of their peoplehood in the eyes of many, including the hazel eyes of Sidney Chest, who feigns caring about those poor TBI people who are viewed by Chest and his ilk as a plethora of cottage industries – profit makers.

Leaning back in his leather desk chair, Sydney Chest makes a mental note to have the chair cleaned. It was given to him by his wife Alice on their fifth wedding anniversary. "So what is the issue here with Allen Small?"

"He’s not happy with his staff. Says they talk to him like he’s a child." These words come in bored tones from Sally Stipple, a rather rotund woman with two strands of thick black beads around her neck and matching earrings. Her lips are large, pasty and pointless, like two dollops of silly putty hastily applied. She wears no make-up save for bright red lipstick. She wears a nose ring. She is 44 years old, looks 60, is divorced, no children, and, is a former nursing administrator. She sees the TBI people for what she knows they were. Needy, often misguided beings who are, if not entirely absent any purpose in life, entirely absent any real future in life. These people, though they aren’t really people any more, at least not completely, are stuck in place, damn lucky to get the services they are getting, and would do themselves a bit of justice, yes they would, if they’d just learn to show a little gratitude. They are forever complaining they are being talked too like they are children when they ought to be glad people are talking to them at all.

Sally Stipple runs a tight ship and Sidney Chest likes her for it and will go on liking her for it as long as Sally Stipple’s dictatorial streak keeps the billing up to speed which keeps the money coming in. In Sydney Chest’s world, Sally Stipple is what health care is all about, at least the health care his company is about if he has anything to say about it thank you very much. the company he boisterously calls the best of its kind in Patch Falls and the surrounding area.

Sydney Chest keeps the stress on billing by crying poverty (he’s actually very wealthy) at all times. He knows it was important to instill in his employees the fear-producing belief that the company is always one billing cycle away from total collapse, that if it wasn’t for his willingness to infuse the company’s coffers with his own personal money and the money of his darling wife Alice for that matter, the entire operation would collapse into a pile of dust and be swept away by the day’s first breeze.

His feigned poverty  underscores the hideously misguided belief that his is a generous heart when he deigns to take a survivor of brain injury out for breakfast or lunch and feigns listening with genuine interest and concern, sending the survivor back into the day program that, like many other programs of its kind, proves there is such a thing as community-based warehousing. Sadly, if there is naiveté or perpetual hunger in the heart of the survivor, quite a few, not all mind you, find themselves blinded by the wondrous portions of food just consumed, thanks to the beneficent Mr. Chest, and  Mr. Chest’s willingness to even order him or her a coffee to go. They return to the confines of the day program and talk about how kind Mr. Chest is, not realizing, at least in the moment, that the heart of a cadaver has more warmth than the organ that beats greed in the bosom of Sydney Chest.

NY TBI Waiver: Not Always Health or Care

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I’ve been living in a new county in New York for four months now and I am still waiting for the TBI Waiver’s RRDC (Regional Resource Development Center), the contract employee of the state’s Department of Health that represents the DOH and oversees those who provide waiver services and waiver service recipients, like myself, in a particular region, to approve my service plan.

Not a surprise, though it should be.

Now, to say the the state’s DOH has been anything but impressive in it’s management of the waiver of late is an understatement. Let’s add another fact to the mix. The RRDC in my area is STIC,  the Southern Tier Independence Center in Binghamton.  Have you read about them before in this blog? Of course you have. They’re the ones who hired Timothy J. Feeney of fictitious college degree fame to play a major role in STIC’s new contract for the Neurobehavioral Project linked to, wait for it, the TBI Waiver.  When STIC’s executive director, Maria Dibble, was notified that Feeney’s claim to have a valid masters and doctorate was bogus, it apparently didn’t matter.

Is it any wonder there is some inexplicable delay in signing my service plan? I am waiting for a discharge from the waiver notice any day now claiming that somehow the brain injury I live with has, what, gotten better? In truth, it debilitating impact on my life has increased dramatically. But I don’t expect that matters to some either.

As a side note, or perhaps not so side note, it is also worth noting that I’ve yet to receive a decision from my Fair Hearing held on December 1, 2010, a Fair Hearing in which we sought to reverse the DOH’s denial of my request for a life alert and white noise machines given the increase in sound sensitivity I live with. And hey, this month is an anniversary of sorts, given that it is now one year since we first asked for them.

Like I said, the TBI Waiver is not always healthcare because sometimes it lacks commitment to health and sure as hell lacks care.

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.