Tag Archives: Kahrmann Coalition

NY State’s assault on NYers with brain injuries continues unchecked

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The New York State Department of Health is refusing to release the names of the people  drafting the new manual for the state’s Traumatic Brain Injury Waiver.  To his credit, Deputy DOH Commissioner Mark Kissinger has revealed the state’s  opinion of New Yorkers with brain injuries, particularly those participating in the TBI Waiver. He ignores them. He now ignores written requests for the names of those DOH staff (and contract employees, if any, are involved) designing the TBI Waiver Manual. Moreover, the DOH, thus far,  has not honored a Freedom of Information Law request for the names filed by this writer.

The TBI Waiver is a Medicaid program designed to keep those with brain injury disabilities living in the community and to help others return to the community. Kissinger, who has more than once and no doubt will again profess DOH’s desire to work with all stakeholders – has proven that assertion to be glaringly disingenuous. It’s too bad because the likes of the Brain Injury Association of NY State, the state’s Traumatic Brain Injury Services Coordinating Council, Disability Rights New York (the state’s protection and advocacy agency),  the Kahrmann Advocacy Coalition, along with people with brain injury disabilities, their  families a friends, experts in the field of neurology, and more,  are all willing and eager to work collaboratively with the DOH. The DOH is not interested in collaborating with anyone.

Disrespecting New Yorkers  with brain injury disabilities is nothing new for the DOH. Things have gotten even worse under Governor Andrew Cuomo. Several, who have asked not to be named out of fear of reprisal from the governor, have said Cuomo is something of a bully. I’m not surprised. It would be nice to learn otherwise, but actions speak louder than words and given that Cuomo has a well-earned and even admirable reputation for keeping close tabs on all state agencies, it is impossible to believe he is unaware of the DOH’s disrespectful and ruthless treatment of NYers with brain injury disabilities, not to mention the similar treatment the state inflicts on those waiver providers struggling to provide the best services for their clients. There has not been an increase in reimbursement rates for them since 2007 and providers receive zero reimbursement for training their staff in brain injury.

All this brings us back to the DOH’s refusal to release the names of those designing the TBI Manual. I suspect one of the underpinnings for the refusal is this: those developing the manual have no expertise whatever in the brain or brain injury. A sickening and scary truth.

Please don’t think this is the only example of the DOH savaging the rights of New Yorkers with brain injuries.  Until November 2011,  if you filed a complaint related to the TBI Waiver you were never ever informed of the outcome of the complaint. If you were a waiver participant and your rights were denied in some way or you’d been abused or had your belongings stolen by a staff member and you filed a complaint with the DOH, you were never told the outcome of the complaint. The DOH acknowledges this. And, when it claimed to have changed this policy, agreeing to inform participants of the outcomes of their complaints, one DOH official admitted  the DOH was unable to provide the outcomes for the thousands of complaints previously filed. Given the waiver came to New York in 1995 were talking about complaints filed over a span of 16 years whose outcomes will never be provided to the complainants. Interestingly,  the DOH official who openly admitted the DOH was unable to provide the outcomes to these complaints was none other than Deputy Commissioner Mark Kissinger, the very same DOH official who now ignores requests for information New Yorkers legally have a right to.

You wonder if the likes of Kissinger and Cuomo forget they work for New Yorkers. Perhaps they simply don’t care.

NY State’s assault on NYers with brain injuries continues unchecked

Posted on by
3

The New York State Department of Health is refusing to release the names of the people  drafting the new manual for the state’s Traumatic Brain Injury Waiver.  To his credit, Deputy DOH Commissioner Mark Kissinger has revealed the state’s  opinion of New Yorkers with brain injuries, particularly those participating in the TBI Waiver. He ignores them. He now ignores written requests for the names of those DOH staff (and contract employees, if any, are involved) designing the TBI Waiver Manual. Moreover, the DOH, thus far,  has not honored a Freedom of Information Law request for the names filed by this writer.

The TBI Waiver is a Medicaid program designed to keep those with brain injury disabilities living in the community and to help others return to the community. Kissinger, who has more than once and no doubt will again profess DOH’s desire to work with all stakeholders – has proven that assertion to be glaringly disingenuous. It’s too bad because the likes of the Brain Injury Association of NY State, the state’s Traumatic Brain Injury Services Coordinating Council, Disability Rights New York (the state’s protection and advocacy agency),  the Kahrmann Advocacy Coalition, along with people with brain injury disabilities, their  families a friends, experts in the field of neurology, and more,  are all willing and eager to work collaboratively with the DOH. The DOH is not interested in collaborating with anyone.

Disrespecting New Yorkers  with brain injury disabilities is nothing new for the DOH. Things have gotten even worse under Governor Andrew Cuomo. Several, who have asked not to be named out of fear of reprisal from the governor, have said Cuomo is something of a bully. I’m not surprised. It would be nice to learn otherwise, but actions speak louder than words and given that Cuomo has a well-earned and even admirable reputation for keeping close tabs on all state agencies, it is impossible to believe he is unaware of the DOH’s disrespectful and ruthless treatment of NYers with brain injury disabilities, not to mention the similar treatment the state inflicts on those waiver providers struggling to provide the best services for their clients. There has not been an increase in reimbursement rates for them since 2007 and providers receive zero reimbursement for training their staff in brain injury.

All this brings us back to the DOH’s refusal to release the names of those designing the TBI Manual. I suspect one of the underpinnings for the refusal is this: those developing the manual have no expertise whatever in the brain or brain injury. A sickening and scary truth.

Please don’t think this is the only example of the DOH savaging the rights of New Yorkers with brain injuries.  Until November 2011,  if you filed a complaint related to the TBI Waiver you were never ever informed of the outcome of the complaint. If you were a waiver participant and your rights were denied in some way or you’d been abused or had your belongings stolen by a staff member and you filed a complaint with the DOH, you were never told the outcome of the complaint. The DOH acknowledges this. And, when it claimed to have changed this policy, agreeing to inform participants of the outcomes of their complaints, one DOH official admitted  the DOH was unable to provide the outcomes for the thousands of complaints previously filed. Given the waiver came to New York in 1995 were talking about complaints filed over a span of 16 years whose outcomes will never be provided to the complainants. Interestingly,  the DOH official who openly admitted the DOH was unable to provide the outcomes to these complaints was none other than Deputy Commissioner Mark Kissinger, the very same DOH official who now ignores requests for information New Yorkers legally have a right to.

You wonder if the likes of Kissinger and Cuomo forget they work for New Yorkers. Perhaps they simply don’t care.

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.

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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Kahrmann Coalition to Meet with NY DOH

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Members of the Kahrmann Consumer Advocacy Coalition are expected to meet with Deputy Commissioner Mark Kissinger and other New York Department of Health officials in early February in part to discuss concerns about a recent DOH directive to transfer injury brain injury survivors living in the community to agencies that may not be prepared take them and, in doing so, destroy relationships with agencies that have been providing effective care, in some cases, for years.

“We’re concerned that freedom of choice is being denied, that survivors may find themselves in places not equipped to support them and others may find themselves placed in nursing homes,” said coalition founder, Peter S. Kahrmann. 

Kahrmann, who lives with a brain injury as a result of being held up and shot in the head at point blank range in 1984, hopes the meeting will prove beneficial to all. “If they are talking with consumers and if this directive is being supported by consumers, that’s a healthy thing.  That’s not we’re hearing. Something simply being inflicted on consumers, not so healthy.”

Kissinger says agencies providing community support staff to 63 survivors of brain injuries will have to discharge their survivors to other agencies because they are not Licensed Home Care Agencies. Some of the agencies being asked to transfer people have been providing quality care for years with the Department of Health’s blessing.

Kahrmann said the Coalition has heard  the number of consumers being transferred exceeds the 63 reported  by DOH officials. “Right now the number we’re hearing is in the neighborhood of 150 people,” Kahrmann said.

The KCAC is a coalition of brain injury survivors, family members and other interested parties. “It is an extraordinary thing to see the coalition grow,” said Kahrmann.

Kahrmann said all coalition members are urged to become members of the Brain Injury Association of New York State. “They are the centerpiece for advocacy in the state,” he said.

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Note: People interested in joining the KCAC can write to Mr. Kahrmann at peterkahrmann@gmail.com or write to, Kahrmann, P.O. Box 19, Westerlo, NY 12193

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