The heinous among us

If you know someone with a disability then you know there are people in the public and private sector who willfully make and support decisions denying equal rights to people with disabilities (PWD).  Decisions and policies that put peoples homes  and lives  at risk, deny, reduce or take away services that allow PWD to attain their maximum level of independence, send them out of state for sub-par care; in short, treat them as something less than human.

I do not understand how one human being can treat another human being like they are little more then feces and sleep at night. People who treat people like this are the misguided heinous among us and should be exposed and held accountable at every turn.

Some in the private sector see us (I live with a disability) merely as a way of making money. We are revenue streams, nothing less, and certainly nothing more. Not long ago there was a phone conference in my home state of New York among various parties involved in the state’s Traumatic Brain Injury Medicaid Waiver. The idea of allowing family members to act as home staff and get paid for doing so came up, the argument being that the presence of family, of loved ones in someone’s care, can help in the rehab process.

Some in this phone conference, including providers, thought this was a good idea. However, another provider complained that allowing family members this role would mean he would “lose hours.”  While I will not name this person, I know him. He told me once he had considered becoming a monk and, as far as I know, attends church on a regular basis.

Now, I’ve been an equal rights advocate for some time. I’ve never run across a government agency more ruthless and inhumane in its treatment of, in this case, people with brain injury disabilities, than Andrew Cuomo’s New York State Department of Health.  If actions speak louder than words, they do not care a wit about the lives of New Yorkers with brain injuries.

First of all, those in the DOH who oversee the TBI Waiver program and write the TBI Waiver Manual have absolutely no formal training or formal education in the brain. Not one iota. When I recently asked Deputy DOH Commissioner Mark Kissinger for the names of those in the DOH drafting the TBI Waiver manual, he would not tell me. Finally, a FOIL request pried the names from the DOH’s secretive claws. Who are those drafting the manual? Kissinger, Maribeth “Knuckles” Gnozzio, Lydia Kosinski, a DOH attorney and a member of the office staff. Not one of them has any formal training or education in the brain.

Along with the DOH, New York has the Traumatic Brain Injury Services Coordinating Council. Advocates for people with brain injury disabilities are waiting to see if, under its new leadership, the TBISCC will, finally, hold the DOH accountable, present real proposal to the DOH, and publicize all the council is doing online for all to see. It has been repeatedly suggested to the TBISCC that it create its own facebook page and or start its own webpage. This has not happened, yet, but if they are as sincere as we are hoping, these webpages will appear.

The TBISCC was formed by an act of the New York State Legislature in 1994 to ” to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” One need look no further than the council’s minutes to confirm the DOH’s lack of interest in doing anything to respect and grow the lives of NYers with brain injuries. Consider this. Not once, in 20 years, has the DOH asked the council for input on how best to serve New Yorkers with live with brain injuries.

Some time ago a friend of mine was cautioned about me by a now retired individual who was in the field of brain injury: “Be careful he doesn’t turn on you,” she warned.  This individual knew at the time that I don’t “turn on” people. She also knew at the time that I will expose people or groups, private or public, who are denying people their rights, treating people as if they are less than human. Such was the case with this person. She was once part of a committee drafting a proposal on behalf of people with brain injuries when other committee members pointed out there needed to be people with brain injuries on the committee. She said this was not true. There was no need for people with brain injuries, after all, she explained, she spoke for them.

Rubbish.

The heinous among us. The greatest justice we can do ourselves and them, is to bring their behavior into the light, expose them. Whatever discomfort this might cause them is nothing compared to the torment and suffering their putting PWD through, and making a living doing it.

Posted in brain damage, brain injuries, disability rights, TBI, TBI Waiver, tbiscc | Tagged , , , , , , , | Leave a comment

Cuomo’s DOH: secretive, cruel, dishonest & incompetent

Whether or not you’re on the New York State’s Traumatic Brain Injury Medicaid Waiver, you’ve got no allies in the Governor Andrew Cuomo’s Department of Health. In fact, Cuomo’s DOH is the main reason NYers with brain injury disabilities are struggling to get the services they deserve.

Recently this writer asked Deputy DOH Commissioner Mark Kissinger who in the DOH was drafting the new TBI Waiver Manual. He would not tell me. Never mind that he oversees the waiver and knew the answer, he simply would not tell me. I then filed a FOIL (Freedom of Information Law) request for the information. After about twenty days I received notice via email that the DOH needed another 30 days to gather the information.

In other words, I was being asked to believe that Kissinger genuinely needed 50 days in all to figure out who worked for him. 

In all likelihood the reason for the DOH’s reluctance to provide the information is linked to the following fact. Not one of the people drafting the manual have any expertise at all in the brain. Not a clinician among them. In fact, when the information requested  finally arrived, those drafting the manual are some of the DOH folks who’ve been inflicting the most damage on waiver recipients, cutting services whenever they can think of an excuse, ending housing subsidies, limiting services, and sending out notices seeking to throw people off the waiver altogether.

Who are those in the DOH drafting the manual (an in-progress document the DOH will not share with anyone)? Kissinger, Lydia Kosinski, Dawn Wiese and, Maribeth “Knuckles” Gnozzio. Gnozzio stopped attending meetings of the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) once her rather problematic background was fully exposed in this blog. Never mind that she’s the program director for the waiver, why bother to attend council meetings when the council’s legislative mandate is to help the DOH identify effective ways of growing the lives of NYers with brain injuries?

The DOH’s dishonesty is on display anytime it professes to care about NYers with brain injuries.

It warehouses some with brain injuries in other states, and despite spending millions of NY taxpayer dollars for their care, refuses to follow-up when informed a NYer placed out of state is suffering or, worse still, being neglected, abused. At a recent TBISCC meeting DOH officials were anything but response when asked what, if anything, prevents New York from filing a complaint with the federal government’s Centers for  Medicaid & Medicare Services (CMS) if it suspects a NYer placed out of state is not getting proper care. CMS oversees long term care in all the states. The fact is, the DOH doesn’t care. Despite the huge sums for keeping NYers placed out of state, sources say it is less expensive than bringing them home.

Lest anyone think there is an upside to the DOH, consider this.  A federal judge had to issue a restraining order in 2011 to prevent the DOH from throwing from throwing a 66-year-old disabled woman off the the TBI Waiver and ending her housing subsidy and demanding the woman pay them $24,000, all without explanation. Actions that would have likely put her life in danger by rendering her homeless.

Can you guess who in the DOH were driving the bus back  in 2011? Let me help you: Kissinger, Kosinski, and “Knuckles” Gnozzio. Three of those drafting the TBI Waiver manual. No wonder they didn’t want anyone to know.

Posted in Andrew Cuomo, brain injury, cms, maribeth gnozzio, mark kissinger, TBI, TBI Waiver, tbiscc | Tagged , , , , , , , , , | Leave a comment

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 they work for New Yorkers. Perhaps 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

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

Posted in dream work, dreamwork, poems, poetry | Tagged , , , , | Leave a comment