Tag Archives: Kahrmann Advocacy Coalition

Willing to fall down

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A brain injury is not a static being. One’s relationship with the damage changes overtime. I am no exception. It is also hard at times to determine how much is the injury and how much is rooted in one’s emotional configuration.

There was a time after the injury in which I could work 50 to 60 hours a week. That ended some years back as fatigue is an issue now. Keep in mind that a damaged brain is physically working harder than a non-damaged brain. It’s as if a six-cylinder engine is now running on five cylinders. It still runs, but it has to work harder to run.

I also deal with PTSD. So do many others with brain injury. PTSD (Post Traumatic Stress Disorder) is essentially a disorder that results from a trauma out of the norm. In my case it was being held up and shot in the head. I imagine the combination of living on the streets, being held under gunpoint for several hours before escaping, and being held up at gunpoint only months after the shooting also contributed to the presence of the PTSD.  The damage in my frontal lobe as a result of the bullet does not help. Of late, my isolating has spiked. It is rare I leave the house. I’ll put off shopping or going to the library until the last minute.

I do manage to get to the support groups I facilitate for people with brain injuries and I do manage to get to leadership team meetings for the Kahrmann Advocacy Coalition. I also get to meetings of New York State’s Traumatic Brain Injury Services Coordinating Council. I suppose I am able to break out of seclusion for the aforementioned reasons because lives are at stake, people’s equal rights are at stake, and spending time with fellow survivors of brain injury means a great deal to me.

I can tell you that the day-in day-out struggle with the PTSD-isolation is exhausting and upsetting. Those who know this terrain like I do, and there are many who do, will understand when I say it is not a matter of not wanting to go out. I do. It is a matter of breaking through what I call the fear wall. Today I succeeded in returning a book to the library. It was beautiful weather and my plan was to park and walk about the town. I couldn’t do it. I drove about the town for a short time and managed to stop at the market for a bit of food. There was a moment in the market when I was frozen still with terror. Part of me wanted to drop my shopping basket and run for the exit. Instead I finished my task and hustled back home.

Once home I realize that in that terror moment I was worried that the internal trembling would become so pronounced and debilitating that I would fall down. It then dawned on me that I need to be willing to fall down, push the edge of the terror envelope in other words and if it makes me fall down, so be it.

I will not give up, of that you can be sure. Why do I write a piece like this? In part I write it because there are many who face the same things I do and if they read this they’ll be reminded and reassured they’re not alone. And if there is anything I have learned in life it is this; the challenges we face become more manageable when we realize we are not facing them alone.

NYS DOH ends contract with Feeney

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It seems the efforts of this pen, the Kahrmann Advocacy Coalition, and others have finally paid off. Sources say the NYS Department of Health has cancelled its contract with Timothy J. Feeney et al effective the end of this month.

This writer revealed in 2008 that Mr. Feeney  misrepresents his educational credentials. He claims to have a valid masters degree and PhD when he has neither. Over the past three years this writer along with other real advocates – not the lip-service advocates in the state who seek headlines based on words not actions – have worked hard to have Mr. Feeney removed from his post in the Statewide Neurobehavioral Project, a group that was affiliated with the state’s Traumatic Brain Injury Waiver. Sources say the DOH has terminated the contract in its entirety.

Those who know me well, I mean really know me well, know I take no pleasure in Mr. Feeney’s demise nor in the demise of the other staff that worked in the project. However, like all of us, they are accountable for their choices. I am, however, very glad that survivors of brain injuries on the TBI Waiver, their families, and the many truly good providers of waiver services will no longer have to deal with Mr. Feeney. Life with brain damage is tough enough, dealing with dishonest people at the same time you are trying to learn how to manage life makes it all the tougher.

I have little doubt Mr. Feeney will continue to misrepresent himself in any venue he can. Hopefully others will be pick up where the DOH  left off and require he be honest or remove him from the field.

The NYS DOH has very little to be proud of when it comes to its oversight of the TBI Waiver; however, it can be proud of the decision to end the contract.

Brain Injury Summit II This Friday

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The second Brain Injury Summit will be held Friday morning in Albany.  Those invited included the Brain Injury Association of NY State, the New York State Department of Health, the New York State Commission on Quality of Care, the Providers Alliance, the Brain Injury Coalition of Central NY, and the Kahrmann Advocacy Coalition.

Given that effective and fluid communication between all is a challenge not uncommon in any multifaceted system, communication will be the primary focus.

The DOH of late has taken a great deal of heat, both from this “pen” and from others. It is my sincere hope that some of the challenges now being faced by survivors, providers, advocacy groups and, not incidentally, the DOH are clarified so when all parties leave the summit, heads are in a more serene place, there is greater clarity all around,  and the commitment to open and effective communication is, in some instances renewed and in other instances begun.

All parties actively took part in the first summit and I fully expect the same this time. There are some justifiably frightened survivors across the state and some understandably worried providers. To say lives are at risk is anything but an understatement.

 

Feeney Facts Plain and Simple

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It is  amazing how stone cold facts sometimes get a bit foggy,  or so some would hope. So, I thought I’d lift the fog a bit.

Fact: Timothy J. Feeney continues to say he has a valid PhD and a valid Masters Degree when he doesn’t.

Fact: The Southern Tier Independence Center in Binghamton New York may well get the contract from the New York State Department of Health to be the Statewide Neurobehavioral Project for New York’s Traumatic Brain Injury Waiver.

Fact: All indications are Southern Tier has every intention of giving the work, once again because they did it before, to Feeney and his team. 

Fact: The New York State Department of Health and the Southern Tier Independence Center are fully aware of  Feeney’s bogus degrees and both parties have received communication from brain injury survivors, family members and, in some cases, providers, asking to be protected from having Feeney and his company in their lives. Some providers have said they will stop providing services if Feeney returns.

Fact: If the Southern Tier Independence Center gets the contract and gives work to Feeney and the state doesn’t step up and stop this from happening that means that the Southern Tier Independence Center and the NY State DOH are okay with a dishonest and unqualified individual impacting the lives of the 2700 or so brain injury survivors on the waiver, their families, and the dozens of honorable healthcare providers trying to provide waiver services.

Fact: If the last Fact were to happen, it would mean Southern Tier and the State are not putting the survivors, their families, and the providers first.  And, by the way, it would mean both parties are sticking  it to the taxpayers because it is taxpayer dollars that would foot the bill, and taxpayers deserve honesty too.

Fact: The Kahrmann Advocacy Coalition, whose membership will soon be larger than that of the prestigious Brain Injury Association of NY State, is paying close attention, which is fairly relevant since the coalition was founded by brain injury survivors and their loved ones, they very people all the aforementioned parties say they care about.

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