Tag Archives: TBI Waiver

Break for freedom – Day 16 (A writing pause)

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Day 16  – Saturday August 26, 2017 (A writing pause)

9:26 a.m. – I home from my walk about two hours ago. It was a peaceful affair, sweatshirt weather, it was 45 degrees this morning early. I completed the entire walk in comfort. I am going to, for now, pause the daily briefs about the walks. No doubt I will be back reporting on how they are going, or how a specific one stands out, and why.

I will, you have my word, report if I take a single day off from walking, and what led me to do so. No doubt I will at some point, but all of me knows, now is not the time.

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For Charley

If you’re going to lie to me….

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I don’t ask for much in life other than respect, so, if you are going to disrespect me by lying  to me, the least you can do is make an effort to make it a good, show a little creativity for God’s sake.

I’ve decided to rummage around in my mind and, perhaps the minds of others, to develop some fun, at least for me, responses to people who lie to me so brazenly and obviously I don’t know whether to burst out laughing and ask them if they’re joking or simply stupid enough to think I believe them, or smack them upside their “head” with a verbal dagger that says, we both know you’re lying and you’re such a self-absorbed little twit you’re going to stand by your stench-rubbish anyway.

Anyone who knows me knows I have no ability to be silent when someone’s rights are being denied. I don’t care of it’s people with disabilities, people who are Jewish, African American, Latino, Muslim, veterans, members of the LGBT community, women, etc., etc., I’m not about to stay silent. People who know me also know it is very likely, particularly of you are a public official or someone in a position of authority, that I am going to expose your bigotry for all to see. 

All that aside, let me say there is a special place in hell for people whose claim to care about the rights of others is nothing more than lip-service smoke screens. A form of dishonesty so glaringly obvious I want to grab them by the throat and say, “Why not grow some backbone and say out loud that you don’t give a rat’s ass about these people and you just care about money and power?” 

What’s somewhat amusing is the feigned indignity performances I get to see when I call someone out for lying, for being a hypocrite. They put so much effort into their performance (without exception they’re lousy actors) I’m surprised they don’t snort and dribble out of the corner of their mouths, go into convulsions, and start speaking in tongues. Some feign astonishment to such I degree I expect them to allow their simian roots to take over and start pounding their chest.

Many of the lies I see these days  come from those who claim they are committed to protecting the rights of New York residents who live with brain injury disabilities. Since their commitment is limited to the effort it takes to say they are committed, the least they could do is make a commitment to develop their lying skills. I’ll probably catch them anyway, but at least catching them might pose a sliver of a challenge. However, exposing them will not.

So, here’s the thing, if you’re going to lie to me, make an effort, or give us both a break and shut up.

A coward named Cuomo

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Whether you liked him as the governor of New York or not, only a fool would doubt the courage of Mario Cuomo. He stood fast in his opposition to the death penalty (I oppose it too) even when he knew many disagreed.  He was courageous man. Not so his son, the current governor of New York, Andrew Cuomo. All I know makes it clear to me he is a coward and, if you permit me a redundancy, a wimp.

Numerous sources tell me about the bullying he likes to do behind the scenes. Bullies are cowards. Able to act all tough and strong when there is no one to challenge them. Leave it to Cuomo  to run around New York playing like he’s John Wayne when inmates David Sweat and Richard Matt escaped. Notice Cuomo was always surrounded by state police. Easy to play tough guy when you have some real-life armed toughs as your escort.

And now, Cuomo has his Department of Health on the brink of pulverizing the lives of New Yorkers with brain injuries and the business stability of those who provide services to them under the state’s Traumatic Brain Injury Waiver Program. A waiver is a Medicaid reimbursement program that provide services so a vulnerable part of the population can live in the community or return to community life. It’s been in this state for 21 years now.  And under whose watch did it come to be?  Mario Cuomo’s, the Cuomo with the courage and integrity and compassion for others. Andrew’s DOH wants to shove the waiver into a form of managed care that will destroy the lives of New Yorkers with brain injuries, remove their housing subsidies, and get rid of their case managers. 

In other words, the son wants to destroy something great built by his father.

 

Open letter to New York Governor Andrew Cuomo

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Dear Governor Cuomo,

I am a native New York who lives with a brain injury. I also head up the Kahrmann Advocacy Coalition. KAC is  grassroots advocacy coalition based in New York, that has, for some time now, tried to work in a cooperative manner with your New York State Department of Health to make sure New Yorkers with brain injuries receive the best possible care and, of course, have their equal rights both respected and protected. 

This not what New Yorkers with brain injury disabilities are experiencing from your DOH. Getting your DOH to work with us (or anyone for that matter) and protect the rights of NYers with brain injuries doesn’t work. Your DOH doesn’t care.

In fact, the dysfunctional and denial-of-rights-respect-and-dignity climate your DOH perpetuates includes the following: anyone providing care to New Yorkers on the state’s Traumatic Brain Injury Waiver Program is not required to have any expertise at all in the brain and brain injury. Those in your DOH who oversee the waiver are also not required to know a thing about the brain and brain injury, and yet, they are the one’s deciding who will or won’t get services as well as who will or will not remain on the waiver.

You are also aware, unless of course the DOH is making it a point to keep this secret from you, that New Yorkers placed in out-of-state facilities receive zero protection or oversight from New York State. Your DOH’s rote response to this is, we have no jurisdiction in that state, a response which is, on the face of it, true, but there is, and the DOH knows this, nothing preventing New York State from filing a complaint with CMS (Centers for Medicaid and Medicare Services), the very entity that allows a state to have a waiver in the first place. And, NY does nothing to protect its own outside NY’s borders, even though millions of New York dollars are spent on their care.

Over the years the problem with those DOH staff involved in the lives of NYers with brain injuries has been pointed out, more than once but these people stay in place. People like Mark Kissinger, Maribeth Gnozzio, Lydia Kosinski, and Shelly Glock, to name a few, should be transferred or fired outright. Their mandate appears to be, Be as uncooperative with members of the public and as unsupportive of the rights of New Yorkers with brain injury disabilities as you can possibly be. I’ll give you an example which, in fairness to you, I know you are not aware of. Some months ago I filed a FOIL (Freedom of Information Law) request asking for the names of those in the DOH who were drafting the TBI Waiver Manual. Before filing the request I asked Mr. Kissinger directly via email and received no response. At any rate, a month or so later I received notice from the Records Access Office letting me know that the DOH (Mr. Kissinger) needed another 30 days  to gather this information.  After more than two months, I finally received the answer to who in the DOH was drafting the TBI Waiver Manual. You’ll never guess. Mr Kissinger and his staff. The delay in your DOH’s  response was deliberate.

Governor, I not only liked your father, I admired him and believe him to be one of the finer governors New York has ever had. At the moment, I do not feel the same about you. I sincerely hope that changes. Overtures earmarked for you are to no avail, they  get waylaid or referred elsewhere, which is why this letter to you is being sent publicly, in the open. This will not be the last letter, there will be more.

Now, you have the reputation, perhaps unfairly, of being  something of a bully. I don’t know if this is true or not. But in the event there is any truth to the reputation, please know  I am not worried about bullies. You see, Governor, I live with a brain injury. In 1984 I was held-up on the streets of Brooklyn and shot in the head at point blank range. The bullet remains lodged in the brain. I was able, somehow, to get back on my feet after getting shot. The two aforementioned realities make two things clear: I do not fear bullies and I do not doubt my willpower and tenacity. 

Sincerely,

Peter S. Kahrmann

A word on oppressors & advocacy

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Any company, agency,  government, school, healthcare provider, individual, who seeks to minimize the voice of those they claim to serve is an oppressor. To be fair, some get caught up in group-think and find themselves supporting decisions, methods, laws, protocols, directives that oppress a group or groups of individuals. Others know bloody well what they are doing. Some oppress out of a palpable dislike for those they claim to serve, while others do so because those they serve, people with disabilities (PWD) for example, are little more than revenue streams in their eyes. Moreover, PWD have been used as fodder for those who revel in the sewage of arrogant self-aggrandizement.

The question is, a willful oppressor or an oppressor out of ignorance, or, equally relevant, out of fear? Fear of reprisal if he, she, or they hold the oppressors accountable. Dr. Martin Luther King Jr. was absolutely right when he said, “In the End, we will remember not the words of our enemies, but the silence of our friends.”

Back in 2008 I lost all income and all employment because I would not remain silent when a particular New York State health care provider, a Traumatic Brain Injury Waiver provider to be exact, was denying the rights of those participating in the program in part by community-based warehousing. In other words, put as many difference services on the shoulders of the program participant so you can bill (make money) as much as possible. It was made very clear to me that I needed to go along to get along or lose everything (meaning, in this instance, all my income and healthcare coverage). I chose that latter.

I knew then, just as I do now, that real human rights advocacy (as opposed to lip-service advocacy) can be a bloody business. If you are the real deal on the advocacy front you’re in good company: Mandela, King, Gandhi, Susan B. Anthony, Malcom X, Medgar Evers, Harvey Milk, Elie Wiesel, Simon Wiesenthal, Gloria Steinem, Betty Friedan, Frederick Douglass, Malala Yousafzai, just to name a few.  All of the aforementioned paid dearly for their advocacy. Loss of freedom, loss of life. So, when it comes down to it, any price I may have paid pales in comparison.

It seems to me the job, if you will, of any real human rights advocate, is to, by any non-violent means necessary, drag the oppression and the oppressors into the open, and hold them accountable.

Recently I was pondering a column about accountability. I found myself wearing a rather large smile when several thesauruses listed accountable and responsible as synonyms. I know  a few oppressors who, on the one hand, would, with misplaced pride and predictable defiance, say they do their jobs responsibly. Yet the moment you hold them accountable,  these folks would slither under a rocks with remarkable speed and spit out venomous accusations of unfairness at those holding them accountable.

Oh well.