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

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 the New Yorkers are who they work for, or maybe they simply don’t care.

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30 years ago today

Thirty years ago today I was held up and shot in the head at point blank range. The bullet remains lodged in my brain. If you think this is a difficult day for me, it is anything but. In fact, the anniversary of the shooting finds me with an extra spring in my step, as the saying goes. First, the remarkable truth and gift that I still have my life is never lost on me on this day. That truth has a little extra glow to its already formidable luster.

I don’t spend a lot of time (anymore) thinking about the details of that morning. I was held up by two people, one, a teenager, was the shooter. I never did see the second person, the one who emptied my pockets while the kid held the gun to the side of my head. It was around five in the morning and it was dark and no one except the three of us was around.  After the person relieved me of the $63 in my pockets, the kid shot. I came to on the ground and somehow, I have no idea how because I have no memory of it, I got back to my feet. Soon a voice from down the street called out to me. I saw a slender man in pajamas hurrying towards me. I would later  learn his name. Mark Jenkinson. He was and is an extraordinary photographer and gifted writer.

The reality of that experience was, and in some respects, still  is,  out of my comprehension’s reach. I didn’t learn how far out of reach until the first year anniversary when I got together for dinner with friends, including Mark, at the 7A Café in the Lower East Side.  It was Mark who introduced me to  how beyond my comprehension’s reach that morning was, and how remarkable the human mind is at getting us through life’s rougher waters.

We sat together at dinner’s end and I told him my memory of that morning. That I’d heard him call out and when he reached me he took me by the arm and said, “My wife’s calling the police and ambulance,” and how we began walking towards his house and how I could see he was struggling to stay composed because I was bleeding profusely (20 percent of your body’s blood supply is in your head) and how when I saw police cars from the NYPD’s 84th Precinct in Brooklyn coming up the street I pulled him into the street and flagged them down because I was afraid they wouldn’t see us in the dark and that would mean the end of me.  And, how, when they stopped, I got into the back of the lead cop car under my own steam.

Mark gave me a gentle smile and said, “You’re completely wrong. The only thing you’re right about is you were lucid. The fact is you kept falling down and getting up when I saw you.” He went on to explain that he was laying me down on the front steps of his house when the police arrived and that I had to be helped into the back of the cop car. His more accurate memory of that morning was, while emotional to absorb, comforting because it made more sense. I realized that my memory of that morning reflected the mind’s capacity for survival. My mind was only allowing me to perceive what it could handle. Had it let me know the reality of my physical condition my ability to be lucid would have perished, and I probably would have to.

So, here’s to the miracle of life. Here’s to the all too few truly courageous and compassionate people like Mark, and lastly, here is my message to you. Remember to live. Please remember to live.

Posted in 84th Precinct, crime victims, head wounds, Mark Jenkinson, NYPD, shooting victims, TBI | Tagged , , , , | 2 Comments

My threatened home

I am in my comfort zone advocating for an individual or group whose rights or lives are being threatened and are in need of help and support. Not so when advocating and asking for help for me, as I’m about to do,  I cringe and recoil a bit. It’s embarrassing. The fact it shouldn’t be doesn’t deflate the feeling. The fact I am unable to continue living in my current home with any degree of emotional safety (I’m not so sure about my physical safety either)  compels me to deny embarrassment decision-making power and write a description of my circumstances.

The situation

I am  early in my third year living in this North Adams, Massachusetts apartment, one of seven apartments in a large old house. Shortly after I moved in I learned there was a high tenant turnover. In didn’t take me long to learn why. The landlord is, in short, ruthlessly cruel, and appears to take pleasure in it. Two years ago,  on a whim is about all anyone could figure at the time, he tried to force me to get rid of my assistance dog, a black lab mix named Charley, (a loving nod to Steinbeck’s Charley) by having his property manager fabricate a story claiming the dog bit him. When neighbors thoroughly debunked the story and attorneys for Massachusetts Fair Housing got involved, the landlord backed off.

Charley is an assistance dog. Helps me manage symptoms of a brain injury and PTSD resulting from being held up and shot in the head in 1984. The bullet remains lodged in the brain. The landlord was and is well aware of Charley’s role in my life.

Recently, his property manager converted a pop-up camper into a chicken coop and placed it in the tenants’ parking area. Soon it was filled with something in the neighborhood of 40 chickens. It did not take long for stench to fill the air. Complaints were filed North Adams authorities who made the landlord remove the chickens. He was not happy and, because of my history as an advocate, believed I was the one who’d filed the complaint (I wasn’t, although I was about to).

The day after the chickens were removed I received an email notifying me my rent would be increased, he wanted security, and, he soon asserted, Charley’s outdoor dog kennel was there temporarily as far as he was concerned. I receive a Section 8 rent subsidy and  Section 8 authorities told him he can’t now demand security.  It is worth noting that it was after he’d looked me up on the web and read about my advocacy efforts he volunteered to waive security. Lately he has been taping notes on the front door of the house warning tenants they are in danger of being raped and killed because there is a heroin problem in the area. In one note he identified the children living here who were in danger of being raped and killed. Can you imagine? These children and their mother come home and read this.

The landlord’s views of violence and weapons are unsettling as well. I once found a large caliber hollow-point bullet near the outdoor water faucet. I’m not a gun owner so I called local law enforcement and gave it to them and let the landlord know. He was furious. Told me next time I find any bullets I should give them to him. Then, shortly after the horrifying shootings in Newtown Connecticut in which 20 children were killed, I wrote a piece called, With love for Newton, CT. – children first. The landlord read the piece and sent me an email telling me knives are more dangerous than guns. Now, I’ve got some good friends who are gun owners. I doubt any of them would chose knife over gun when it came to protecting their family and country.

The toll it is taking

Thus far for me there has been an avalanche of anxiety attacks, flashbacks, emergency sessions with medical professionals, medication adjustments, a visit from a crisis team member, and so on.  Much of the damage to my brain is in the frontal lobe, which is, in many respects, the emotional center of things. Thus the anxiety attacks and flashbacks can be and sometimes are fairly immobilizing. I don’t mind getting into the fray on the advocacy front, but my private life and my home must be safe havens.

So, after talking to therapists, doctors, and friends, a decision has been made. For the sake of my health I have to move, find a new home.   Therein lies the challenge and the request for help.

The help needed

There are no monies for moving expenses, for first and last month’s security.  Some have suggested a Kickstarter campaign. If I had the camera to record a statement and statements of others, I would likely do exactly that. It has been pointed out to me by more than one person that wherever I live is the headquarters of the Kahrmann Advocacy Coalition whose efforts, primarily in New York, are focused on the rights of people with disabilities, primarily people with brain injury disabilities. So the challenge is to raise the money for moving expenses ( estimated at $3,000 to $3,500 if I stay in this area) and find a place to live.  If you can help with the cost, that would be wonderful. You can email me at peterkahrmann@gmail.com and I’ll send you the mailing address. If you know of places to live in this area, or nearby Vermont (Pownal, Bennington), please let me know. I have not ruled out moving out of the area.

 To those, like me, in recovery

There is no doubt some who’ve read this are, like me, in recovery. I am sober 12 years this month. Here’s some good news. During this time of grueling upset the thought of using anything has never crossed my mind. Not even for split second. The one thing people and circumstances can never take from me is my sobriety. That I can keep safe. So can you. It’s possible. I promise.

Posted in homeless, kickstarter, losing home, newtown, newtown shootings, north adams ma, recovery, section 8 | Tagged , , , , , , , | Leave a comment

Did you ever believe

Canted dreams edge the sky

Morning rain dimples ponder pond

He turns quick away the dream unfolds

Softly mourns the unspoken

Did you ever believe

 

His word set down strong

Bolted hard fast firm solid

All his stark stride moving

Slips past shadowed hopes

Did you ever believe

 

Buckle down mister boy

Shackled hearts histories abound

Silent vapor trails weave unheard

Hoped for rhythms all gone now

Did you ever believe

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On a distant floor

Seen her sweat shuffle moves down Main Street way sending

Smiles warm blasting hearts dizzy buckling knees she strides on

Seen her in the car just passing head spins sideways catching rainbows

Glancing sunlight ricochets off her eyes for me she drives on

Seen her skirt swirl as she turns dancing free of worries

On a distant floor in the world no more she moves on

Seen her in a dream last night  smiling all the best made dreams

Woke up in the chill cold still of morning no lights on

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