NY Department of Health Betrays Health Care Providers & Brain Injury Survivors

More than 60 people with disabilities will have their lives brutally disrupted and in many cases traumatized as a result of a New York Department of Health that would rather hide behind labels than respect the people it serves.

Sources say DOH Deputy Commissioner Mark Kissinger says agencies providing community support staff to more than 60 survivors of brain injuries will have to discharge their survivors to other agencies (against the wishes of the survivors themselves in many cases) because they are not Licensed Home Care Agencies. Never mind that a number of these agencies filed their applications as requested and they’ve yet to get a response because of a plodding bureaucracy they have no control over.

While Kissinger’s point sounds reasonable, it’s not. The facts reveal that reason – not to mention equal rights for people with disabilities – has nothing to do with it. Kissinger’s response to this is reportedly, Don’t you think these people should be with licensed home care agencies?  Sounds good, but his assertion is nothing more than a political shell game. He and the DOH know full well that these agencies have been providing effective care for years and the notion that survivors are somehow are risk is, in a good light, misinformed and, in a poor light, disingenuous.

Some background. In 2007 the DOH informed companies providing community support staff to people with brain injuries through the TBI (Traumatic Brain Injury) Waiver – a form of Medicaid reimbursement – that they needed to become Licensed Home Care Agencies. Keep in mind that at the time, some of these companies had been effectively providing community support staff for more than a decade. The New York TBI Waiver began in 1995.  Nevertheless, the burdensome blanket of bureaucracy was draped over the providers and so many filed their applications, with, sources say, little if any guidance from the DOH.

Kissinger’s people didn’t bother to talk with any of the more than 60 people whose lives will be damaged by this. And the TBI Waiver, believe it or not, is supposed to be person centered, which means, in short, the person living with the brain injury is supposed to be in charge of their own life.

Sources say Kissinger said agencies with applications filed may still get approved to be Licensed Home Care Agencies and, if they do, their survivors can come back. It’s seems we survivors are absent our humanity in the eyes of the DOH. Just a bunch of inanimate objects to be moved about the landscape.

This blog would urge the survivors to ask for a fair hearing and it would also urge the providers to file suit against the DOH charging that this action is arbitrary and capricious and, if that move wouldn’t hold up, hold the DOH accountable for dropping the ball on it review of applications and hold them accountable.

And hey, here’s an idea, why doesn’t Kissinger himself meet with the more than 60 survivors. If you are going to work for a government agency that plans on pulling the rug out from under the lives of more than 60 people, why not meet them in person?

I am urging all interested parties to call the Brain Injury Association of NY State. As a former board member and a current member they are the state’s leading advocacy organization for brain injury survivors and a truly good group of people.  Their Family Help Line is (800) 228-8201 and their main line is (518) 459-7911. You can also e-mail them at info@bianys.org  While your at it, I would urge each of you to become a member if you are not one already.

Also, call Mark Kissinger’s office at 518-402-5673 and or e-mail him at mlk15@health.state.ny.us

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Happy Birthday Martin

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He would have been 81 today.

Since my childhood, Dr. Martin Luther King Jr., born this day in 1929, has been a hero of mine. He has been an example, one I have not always successfully followed, in how to use the power of nonviolence to manage the forces of bigotry, hatred, evil and injustice.

While Dr. King left this world far too soon in 1968, his method of protest and his example of physical, emotional and spiritual courage will live on as long as the human race lives on. If the human race fails to learn the lessons he taught us, and fails to apply those lessons to the care of mother earth, the human race will do anything but live on.

I remember hearing an exchange Dr. King had with some young black activists who were debating the value of non-violence with him. Dr. King said the following. “Nonviolence is like water. If you have a fire and you throw a bucket of water on it and it doesn’t go out, it doesn’t mean water doesn’t put out fire. It means you need more water.”

He’s right.

It seems to me the same equation applies to the importance of keeping our voices raised in the disability civil rights struggle or the gay civil rights struggle and so on. If our voices are not creating change, it doesn’t mean the voices of the people don’t create change, it means we need more voices.

Happy Birthday, Martin. You are missed and loved by more people than you could have ever imagined.

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NY State Department of Health Wounds Again

Bad enough for 15 years the DOH either turned a blind eye or was too dysfunctional to  figure out that Tim Feeney, arguably, the most powerful person managing the Traumatic Brain Injury Waiver at the time, had bogus credentials and  was prancing around the state and beyond claiming he had a PhD and Masters Degree when didn’t. Now the DOH has issued a dangerous directive to companies providing services to brain injury survivors in New York that will prove devastating to the quality of life for many survivors and, not incidentally, is brutally unfair to some class-act providers across the state.

A couple of years back the DOH determined that providers offering home care staff needed to become licensed home care agencies. Many providers did just that, and some who are waiting on a response to their already-filed applications have been told, reportedly by a by-telephone directive from DOH employee Beth Gnozzio, they have 30 days to transfer their survivors to agencies that are already licensed home care agencies.

Never mind that these agencies lived up to their end of the bargain, never mind that survivors and families will suffer. Compassion and fairness are, in this and too many other instances, not on the menu for survivor, their families and those providers that are, in truth, honorable.

Follow the Money

This blog hopes that every survivor demands a fair hearing in response to this and, it would be interesting to follow the money. In other words, did any already-licensed home care agency contribute or give money in a way that prompted this decision?

The Second Victimization

This brutal directive is unfair to providers who’ve trained their staff and and lived up to their end of the filing for licensure process with the DOH. Worse still, it is brutal because it will mean the consumers, survivors like me, will suffer even more loss. They will lose relationships with people and agencies they have come to trust and rely on. In victimology, the treatment crime victims all too often experiences at the hands of the system is accurately called the second victimization, and so it is in this case.

Rumors Say Housing Subsidy at Risk

On top of this, rumors persist that the housing subsidy for those participating in the waiver is about to be cut, which would be devastating and likely keep people in or send people back to institutions and, in some cases, create homelessness.

Get Your Voices Heard

This blog is urging all interested parties to call and write to Beth Gnozzio and, perhaps more importantly, to call and write Deputy Commissioner Mark Kissinger.

Ms. Gnozzio can be reached at 518-486-4315. Her e-mail is mjg07@health.state.ny.us.

Mark Kissinger can be reached at 518-402-5673. His e-mail is mlk15@health.state.ny.us

And Remember

Your independence is only as strong as the independence of your neighbors.

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The Perplexity of People

People baffle me.

What makes us believe the things we do? Or, what makes us unwilling to accept the realities that confront us, even when we know (or do we?) accepting them is what we must to manage and get free of  life’s more debilitating and, at times, deadly challenges?

If you find yourself hoping this essay will offer definitive answers, forget it. Honest observations for sure, but answers? Definitive ones? Not likely. Not from this pen.

While this is not a political column, some of the more baffling aspects of people show up in their political choices. Take Sarah Palin. First, she is blatantly dishonest. She resigns as Alaska’s governor to fight for Alaska (a confusing rationale to say the least) and takes a job with Fox News. The woman comfortably lies from sea to shining sea, says God told her to run for VP (I thought he liked us!) and yet millions adore her.

Let me switch gears now, or, better put, terrain.

Why, when so many recognize their opponent, I am thinking of alcoholism or addiction, brain injuries, along with other maladies, do they not choose to accept the reality of what they are facing (acceptance does not mean giving in) so their lives will grow the level of independence they deserve?

Let’s face it, when, on some level, you choose to surrender control to an addiction, injury, eating disorder, anger management issues, or similar maladies, including the wounding components of your history, the very last thing you are is independent.

The answer to the proceeding question may revolve around the person’s belief that they do not deserve their independence and, in some cases, their life. I’ve seen cases like this end in death – real death. Not the death of an idea or the death of a dream – death – end of breathing death. And, it is wrenchingly heartbreaking.

By the way, if you manage life by using dishonesty, you lose. Dishonesty breeds carnage in all forms and on all levels.  It is moral poison.  Without question, honesty is the most powerful weapon in accepting and managing life’s challenges.

Being honest requires stepping up to the plate and taking accountability for your own life, for managing your own life. Many use dishonesty to manipulate those around them, to get others to manage their lives for them. The tragedy is, when these folks reach the end of their days, it may or may not dawn on them that they never got to live life as themselves.

I wish I had the magical gift to help people recognize and believe, or dare to believe, that they are now and always have been valuable and worthwhile. That their independence rests in their willingness to accept and manage their own lives.

Independence is a state of mind, not a physical condition or physical level of functioning.

I’ve known and  know people resistant to taking medication or going to psychotherapy because they mistakenly believe if they do they are not handling things independently. Were that misguided belief accurate, then it has been many years since I’ve read a book independently because I wear glasses.

Wearing glasses is independence because by wearing them I am controlling the poor vision rather than allowing it to control me (and, by the way, rob me of my favorite pastime, reading). Taking medication or going to therapy or get free of some of wounds or abuse you suffered in your history is independence. Why? Because you are taking charge and you are managing your life, not the ailment or your history.

Now I am going to get some sleep. That would be me managing my fatigue, being independent, if you get my drift.

Pizza on Her Head – Redux

NOTE: A friend of mine recently told me she keeps a passage from a blog piece I wrote in view because it helps her navigate tough times. Moreover, when she showed it to her psychotherapist, the psychotherapist liked it, printed copies, and is offering them to her patients. As a writer I am not unique when I say nothing moves and humbles me more than learning something I’ve written helped someone’s life. And so I am republishing the essay, first published in June 2009, in it’s entirety. The passage referenced above is italicized.

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In 1985 President Ronald Reagan begins his second term in office, Mikhail Gorbachev becomes the General Secretary in the Soviet Union, Jason Robards stars on Broadway in Eugene O’Neill’s “The Iceman Cometh,” Boris Becker becomes the youngest man to win the Wimbledon’s single’s championship, and Yankee legend Roger Maris dies. In 1985, I can not get myself to leave my home.

The idea of taking part in life outside my home is not just preposterous, it’s terrifying.

Those who pass my second floor apartment door often see a sign taped there that reads, “DO NOT DISTURB FOR ANY REASON.” If someone does knock when the sign is posted, I do not answer the door.

My friends, many of whom live in the same building with me at 286 East 2nd Street, take me under their wing. They keep me supplied with food, coffee, cigarettes, pot – anything I want and need.

Sometimes, when I wake up in the morning and shuffle into the kitchen wearing only my bathrobe, I see an envelope has been slipped under my door during the night. In it, there is always cash and occasionally, the cash is accompanied by a joint. Sometimes a particular style of knocking on the front door signals me that someone is leaving bags of groceries for me.

I am blessed to have friends like this. Dane, my brother in the heart. My apartment mate, an amazing chef named David; my landlords Dorrill and Kathy Semper, and then an array of loving friends: Hart Faber, Kenny Mencher, Arty May, Dominique Nadel, Zeke, Joshua and a scattering of others.

I am kept fed and protecting which is wonderful because I am afraid to leave my home, I am afraid to live; at times, I am afraid to get out of bed. Sometimes I don’t.

The only person on the planet who can get me to leave the house is Michael. From the day we met there has always been something about Michael that lets me know I am safe at all times being me with him.

One time after several days of flashbacks, hideous events that leave me freezing cold and sweating profusely while wrapped in a pyramid of blankets while I wait for the terrors to pass, I call Michael and tell him what is going on.

Michael, who lives in Staten Island, says, “I’ll be there in a couple of hours. Listen for the horn. Hang in there Babaloo.”

Less than two hours later, I hear his Karmann Ghia’s horn. I rush down the stairs, out of the building, and into his car.

We drive off and fire up a joint. Moments later, stopped at a red light at the corner of Avenue A and East 2nd Street, Michael says, “Hey, you’d agree the two of us are a little fucked up, wouldn’t you?”

“A little I suppose, sure.”

“I mean you’ve got a bullet in your head, hole in your skull, I’ve got no legs and a bunch of shrapnel in me, I’d say we’re a little fucked up.

“That’s true.”

“You think so? You see that woman?” he says, pointing at a woman who is crossing Avenue A holding hands with her boyfriend. Both are model gorgeous, beautifully dressed. He looks like he just stepped out of the pages of GQ and she looks like she stepped out of the pages of Cosmopolitan. The one curious thing in this image is she is walking across the street with a pizza balanced on her head.

Michael says, “You see that? That woman’s never stepped on a fucking mine and she’s never been shot in the head and there she is walking across the street with a pizza on her head. And you think we’re fucked up?”

We dissolve into warmly welcomed and, for me, desperately needed, laughter. The light turns green, the car behind us honks, and off we go.

A few minutes later we are parked on 2nd Avenue drinking coffee. We in one of our feigned debates over the WWF, the World Wrestling Federation, with the likes of Hulk Hogan, the Rock, and a muscular beyond-belief female wrestler named China. Michael believes China is as hot as a woman can get and strenuously feigns an insistence that the wrestling is real. I, of course, insist it’s all a bunch of phony position.

“Phony! Whattaya mean phony? You call yourself an American and say something like that? That’s real blood, bro. How can you call yourself an American and call a real American hero like Hulk Hogan a fake? And you don’t think China’s hot? Are fucking crazy?”

“Hot? She looks like a clenched bicep with a head on top.”

“Do me a favor, Peter,” he says, his eyes twinkling laughter a mile a minute, “Don’t embarrass yourself by talking like this in public. Keep it in the car. You’re going through enough as it is. You don’t want your country turning on you.”

“That’s true.”

“Not real… You know that bullet fucked up you’re thinking, bro.”

I am, for the moment, happy again.

There is an unspoken understanding between the two of us. We know things like flashbacks, the darker moments of life, are things you simply need to go through, or let them go through you, I’m not always sure how it works. It’s kind of like sweating on a summer day, it’s unavoidable. Thinking and reasoning never spared anyone their life experience. You just keep going, catch the breaks you can, and remember the basics like bathing, eating, brushing your teeth, washing your hair, keeping your clothes and your bedding clean. Other than that, you let the storms of life have their say and then move on.

Michael pulls up in front of 286 to drop me off. “Hey, listen, next time you start having those flashbacks?”

“Yeah?”

“Just stop it.”

I laugh. “Why the fuck I didn’t think of that is beyond me.”