THE KAHRMANN BLOG

Freedom & Equality vs. Greed and Racism

2012-02-02T12:50:00.001-05:00

These were Mitt Romney’s exact words: “I’m not concerned about the very poor. We have a safety net there. If it needs repair, I’ll fix it. I’m not concerned about the very rich. They’re doing just fine. I’m concerned about the very heart of America, the 90-95 percent of Americans who right now are struggling…You can focus on the very poor, that’s not my focus.”

His glaring lack of understanding and compassion for the poor is only outdone by what can only be explained as one of four things: ignorance, stupidity, heartlessness, or, all of the above. His words imply that those who are poor are not struggling! As if somehow being poor, receiving food stamps and a rental subsidy is the easy life. False. Studies documenting links between stress-related illnesses linked to poverty abound. Anyone who implies that those who are poor are not struggling is, at best, socially and morally tone deaf. For someone who hopes to be president of my country to imply it is disgraceful, and, frankly, inexcusable.

One has to thank God for the likes of Jon Stewart and The Daily Show. Stewart points out that the reason the safety net is there for the very poor is because they’re not okay.

Mitt Romney has been accurately described as the poster boy for the one percent. It seems to me that the upcoming presidential election will pit all that is good about America against those members of the one percent who are saturated in greed and the simmering racism that is the underpinning for much of the hatred for the president.

If freedom and equality are to prevail, President Obama will be elected to a second term. If either Romney or Gingrich ascend to the presidency, God help us all.

Willing to fall down

2012-01-31T20:18:00.001-05:00

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.

Gabby Giffords & some thoughts on head wounds

2012-01-25T14:58:00.001-05:00

Several years ago I was standing in an Albany parking lot talking to three other men who, like me, had survived being shot in the head at point blank range. One of us, I don’t remember who, interrupted the flow of our conversation and said, “Can you believe it? We’ve all been shot in the head and we’re still alive.” A quiet moment followed in which each of us took this reality in. There was, then and now, an ineffable and unbreakable bond between us. I feel the same bond with Arizona Congresswoman Gabrielle Giffords, who handed in her resignation today , as well as anyone who has experienced this form of mind-splitting, life-shredding violence.

What is rarely if ever talked about is a salient truth unique to head injuries, brain injuries if you will. When your head is wounded, whether by bullet, stroke, fall, accident, drugs, alcohol, and so on, the very place from which you experience life has been invaded, and, without mercy, damaged. I cannot and will not say one type of injury is worse than another. What I can say is there is a form of vulnerability one lives with after suffering what, in today’s parlance, is called an acquired brain injury. And acquired brain injury, or ABI, is any injury to the brain that occurs after one is born. The more commonly used term, TBI, or traumatic brain injury, is a subset of the ABI family in that a TBI is any brain injury resulting from an external event: fall, gunshot, accident.

I tend to think that all of us who have lived through these injuries live with this unique form a vulnerability, sometimes consciously, sometimes subconsciously, sometimes both. The question, or perhaps better put, the challenge we each face is this: are we willing to take part in life again knowing these things happen? My answer and my hope for myself and all others is, yes. Am I successful in this endeavor? Not always. There are days on end when I cannot get myself out of the house. I do know I do the best I can.

I know this too; the three men I was in the parking lot that day are doing the best they can. Gabby Giffords is doing the best she can. Thousands upon thousands of Americans of every age and every walk of life are battling like hell and doing the best they can. Because we are all human, our best varies from day to day. Such is life. What I will not do, and I hope no one else will do, is give up. If we give up, then whatever life-villain damaged our brain wins. And one of the last things on earth I want to do is give the circumstances of my injury and the injury itself so much control over my life that they cause me to give up. That is a power they don’t deserve – not ever.

Remembering to live

2012-01-23T09:04:00.001-05:00

A close friend of mine who died last year used to say, “Remember, the moment you’re in is the only place you have to be.” This man helped me enormously on my journey to sobriety, something this writer could not have done alone. In July of this year I will celebrate 10 years sober and it is not an overstatement to say I protect my sobriety with the same ferocity as I’d protect my child. I am not in the least unique, nor am I anywhere near the first to say, anything you put before your sobriety you’ll lose.

More than anything, I don’t want to lose the chance each day gives me to live my life. Remembering to do so can be the challenge. Life is never short on distractions. These days I can get so caught up in the task and frustration of finding a new home that I forget to enjoy the quiet mystical beauty of the falling snow. I can get so caught up in living on a diet that largely consists of beans and vegetables along with the occasional bowl of oatmeal and fresh baked loaf of pumpkin bread that I forget to enjoy the fact that one of my dogs, Charley, is always sitting nearby with his head cocked in the diligent hope and undying belief that it is just a matter of time before a morsel of food hits the floor.

While it is true that life happens to us whether we like it or not, it is equally true that the wonders of life are there for our experiencing whether we like it or not; it is simply a matter of staying open to them which, in most cases, means staying present in the moment you’re in. Early this morning, for example, I went outside to put some mail in the mailbox. A crow perched in a nearby tree cawed good-morning and I responded with, “Hi, sweetie. Glad you’re here.” I’m glad I didn’t miss that moment.

None of us are absent the wanted and unwanted challenges of life. That’s a fact. But none of us are absent the right to live our lives in the moment we’re in and all the glory that can be found there.

Right now, as I write these words for you, there is jazz playing quietly in the background. Next to me is a mug with fresh-made coffee. Not far from where I sit a fire dances in the woodstove. My reading chair is near the fire and on the table next to the chair the book I’m reading, Thomas Hardy’s “Far from the Madding Crowd,” is waiting for me. Charley is curled up by the fire and McKenzie, my old and loyal German Shepherd, is sleeping at my feet. I’ll be damned if I’ll let the challenges of life, particularly the unwanted ones, rob me of remembering to live the moment I’m in. While there will always be challenges, there will always be a moment to be in; I just have to remember to live it. I hope you do too.

The anxiety, PTSD, & brain injury wars

2012-01-20T10:07:00.001-05:00

One thing the trio of anxiety, PTSD, and brain injuries have in common is this; they are all in constant motion. None are fixed realities. Managing them is a task rife with unwanted undulations. Managing them can also be exhausting not to mention, at times, heartbreaking.

My struggle with this trio stems from being shot in the head at point blank range in 1984, escaping from being held under gunpoint for several hours, a couple of years of homelessness, and the loss of five loved ones to suicide.

It would be lovely if willpower alone were enough to overpower this trio. It isn’t. Lord knows you need as much willpower as you can get too manage them. Don’t think for a minute I’m saying there is no place for willpower. There is. It’s a great ally. But it is not enough to win the day every day. The notion that we ought to be able to do so is flawed because no human being has total control over every aspect of their life. That is not how we are designed, and it sure as hell is not how life is designed.

From time to time when I have talked about my battle with this trio I’ll encounter some who seem to think I should just pull myself up by my bootstraps and get on with it. There is nothing unique about this experience. Many who face one or all members of this trio get the same response from time to time. Sometimes the response is genuinely well-intended. Sometimes the response comes from a kind of know-it-all arrogance (and ignorance), usually from people, who, upon closer examination, have some formidable challenges of their own in life and are deserving of compassion, though at the time they’re inflicting their judgment on you, compassion can be hard to come by.

Lately this trio has been all over me. Freezing me in place inside my home. Making the thought of leaving my home feel like I am walking into a blaze of gunfire without protection. It has been worse of late in large part, I think, because I know I have to leave the home I’m in and don’t know where I’ll be living next.

What I do know and am grateful for is the simple yet salient fact that I have accepted the presence of this trio as a reality. And because I’ve accepted their presence, I am better equipped to identify ways of managing them. Changes in meds, disappearing into a good book or a good movie, usually a foreign film, conversation with new and old friends, and my two dogs.

And then there is this, when I wake up each morning there is always a sense of joy at having made it to another day. That early morning hour with my first cup of coffee sitting by the fire in the woodstove is a gift that is never lost on me. It is also moment I hold fast too with deep appreciation when, in the worst of it, I am shaking like a leaf and waiting for the horrors to pass.

When it comes to equal rights, it is personal

2012-01-16T16:13:00.000-05:00

I can think of no better time than now, Martin Luther King Jr. Day, to say a few words to all, including those who, if they abide by the requirements of their respective roles, are bound to the notion that people with disabilities deserve equal rights meaning, they deserve their freedom. There can be no freedom without equal rights. My disability is a brain injury as a result of being held-up and shot in the head in 1984.

In my state of New York the struggle for equal rights for people with disabilities (and seniors) often finds itself confronting those who are seeking to save money at the expense of those rights which includes the right to live as independently as possible. In some cases this means having access to the services they deserve to make this possible. The struggle is, at times, with some of those who loudly pronounce their support for those of us with disabilities, but, when the forces that seek to deny us our rights raise their heads, they fall silent.

Over the years I have made friends and lost friends because I hold people, companies, agencies, councils, committees, and governments accountable for their actions. There are some who think that I start out holding these folks accountable publicly. Not true. In many instances, and, in some cases, for significant periods of time, I have held the aforementioned accountable in conversations behind the scenes. But when that fails, the dysfunction and the glaring disloyalty to their professed cause must be brought into the light of day. There is no doubt I have angered some and there is no doubt some have taken my actions personally.

I don’t advocate for equal rights to make people angry and I don’t advocate for equal rights to wound someone personally. Has it ever occurred to anyone that having your equal rights denied might make you angry? Has it ever occurred to anyone that having your equal rights denied is personal? When you lose your equal rights, you lose your freedom. For some of us with disabilities, losing our freedom includes losing our freedom to remain in the community! Our freedom to choose where we live, what we eat, what we wear, when we sleep, when we get up, where we go during the day, what we hear, what we see… This is no exaggeration. I wish it was, but it isn’t. Just imagine losing your freedom in any or all of the ways just mentioned and then ask yourself if it wouldn’t make you angry. Ask yourself if maybe just maybe you might take the loss of your freedom personally.

There are some groups in New York who truly do practice what they preach. The Center for Disability Rights headed up by Bruce Darling, a man I genuinely love and respect, comes to mind. On the CDR homepage, Mr. Darling writes, “Some people say we are never satisfied. Others try to portray us as complainers. I feel we just call it as we see it.” Thank God they do. And what is it they do? They hold everyone accountable and, at times, they do so publically. After all, sunshine is the best disinfectant.

And then too there is the extraordinary group, ADAPT, whose battle cry is, accurately and not surprisingly, Free Our People! And, in my state, we have NYSILC, the New York State Independent Living Council, along with some Independent Living Centers across the state who are indeed remarkable. But we need more groups like this. The fledgling Kahrmann Advocacy Coalition has, in a very short time, taken the role as the largest grassroots advocacy group for people with brain injuries in the state. Why? Because it was a huge void that needed (and deserved) to be filled.

If all that’s been said here and other places about the need for public advocacy for equal rights has not swayed you, then perhaps the words of the man whose day this is might help. Perhaps his words might help those who remain silent when the rights of any people are being denied to change their ways and speak out.

Dr. Martin Luther King Jr. said:

“Human progress is neither automatic nor inevitable... Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals.”
"A right delayed is a right denied.”
“In the End, we will remember not the words of our enemies, but the silence of our friends.”
“Nothing in all the world is more dangerous than sincere ignorance and conscientious stupidity.”
“Our lives begin to end the day we become silent about things that matter.”
“The hottest place in Hell is reserved for those who remain neutral in times of great moral conflict.”

Let us also remember that the reason this day belongs to Dr. King, and therefore all of us, is because, like CDR, ADAPT, the NAACP and more, he called it the way he saw it, and he did so in a way we all heard, understood and believed.

We shall overcome.

Chasing home

2012-01-13T13:49:00.001-05:00

Late last year I wrote an essay for this blog called I Remember Homelessness. In it I said, among other things, hunger is a harsh master. So is the notion of finding a home. If you’ve ever been homeless, or on the street as well called it during my days of homelessness, the fear it will happen again never leaves you. It certainly ebbs and flows, depending on life’s circumstances, but once it has happened, once you walked hours on end with no place to go, it’s possibility never entirely dissipates.

While I am not homeless, I am again looking for a home. I must move from where I am now no later than May 1 and am able to move as early as April 1. I am on disability, make some money from writing, and have a Section 8 voucher which on the one hand contributes towards the rent and on the other, limits the places one can rent. Because I live alone I have what is called a one-bedroom voucher which means the rent amount Section 8 will recognize is based on the expense of a one-bedroom dwelling. You can rent a two-bedroom if you want, but they lower the amount of rent they’ll approve because the utilities for a two-bedroom are more expensive than they are for a one bedroom. The unpleasant part of the equation is this; if you rent a two bedroom your portion of the rent goes up and the amount they’ll help you with goes down (and the 1% is whining about class warfare?).

And so the hunt is on. I’m looking in a variety of New York Counties as well as Western Massachusetts, parts of New Hampshire, and maybe even Vermont. The New York Counties include Delaware, Otsego, Dutchess, Greene, Rensselaer, Columbia, Washington, Schoharie, and Westchester. A couple of times I thought I’d found a place but, alas, not yet. My hope is for a cottage or cabin, even a mobile home, quiet setting, and dogs allowed. My old German Shepherd and my young Black Lab mix are family; we be in it together.

I’ve been on my own since I was 16. This is not the first time I’ve been chasing home. God willing, it will be the last.

Dancing with Laurie

2012-01-12T10:29:00.001-05:00

I fell completely in love with her the moment I saw her. And then, when I saw her dance, even more so. The fact Laurie Scandurra was slightly older than me, combined with the sadly unavoidable reality that I was 10 or 11 at the time, probably explains why I didn’t propose marriage to her on the spot.

Laurie was and is one of my favorite dancers - ever. And I’ve seen, without exaggeration, hundreds of dancers.

For quite a few years I was a ballet dancer. And, once a dancer always a dancer, at least that’s how I see it.

I wouldn’t trade in my dancing days for anything. I had the privilege of dancing a lead role for the Joffrey Ballet and I danced quite a number of roles (and quite a number of times) for a regional dance company in Orange County, New York called, the Orange County Ballet Theater. It was there that I met Laurie.

She was then and remains now my favorite female dancer. We all had our favorite dancers back then. We’d compare favorites much like kids would compare favorites in their collection of baseball cards.

My love for the ballet preceded my love for Laurie by about five or six years. It happened when, at age five, my mother took me to see the New York City Ballet’s “Nutcracker” at City Center. At the end of the ballet I was sure of three things: I wanted to dance, marry Clara, and beat-up her brother Fritz for breaking her Nutcracker in the first act. I even mailed Clara a love letter addressed to, well, Clara.

I’m still waiting for a response.

My favorite male dancer was, without question, Edward Villella of the New York City Ballet. When Rudolf Nureyev defected from the Soviet Union in 1961 and became all the rage, I wasn’t having it. As far as I was concerned he was no match for Villella. And, for pure depth of artistry, no one was a match for Erik Bruhn of the Royal Danish Ballet. Bruhn was, without question, the Laurence Olivier of dance. I’d rather see Bruhn do one pirouette than anyone else do 10.

But when it came to women, Laurie, as I said, was my favorite. She wasn’t just good, she was great. Why? Because like all great dancers, the all of her being, physically, emotionally and spiritually, was present in her every movement. There wasn’t an emotion on the life-scale of emotions that couldn’t flow out of her with breathtaking power and completeness. I could’ve watched her dance forever. And, oh my, how I wanted to dance with her.

Like me, Laurie did not have the over-valued and over-hyped George Balanchine-body, meaning tall, lean, and absent even a hint of curve. As a result, she didn’t get cast in roles like the lead in Sleeping Beauty or Swan Lake (she would have soared in both). Had she ever been given the chance to dance the lead in “Firebird” she would have come close to matching the greatest female lead in that ballet, Maria Tallchief. Francisco Moncion and Maria Tallchief owned the “Firebird.”

Back then Balanchine, in the eyes of many at the time, could do no wrong. He was seen as almost a God by some. Not me. Yes, he was a brilliant choreographer, but I was not a fanatical fan of Balanchine like my mother and so many others. In fact, when I first saw his ballet, “Agon,” my mother positively blanched and nearly lost her footing when, as we were leaving the theatre, I told her the only thing that needed to be done to fully capture my opinion of the ballet was to add a Y to the end of its name. I was seven.

I did like some of Balanchine’s ballets very much. I would have given anything to dance “Tarantella” with Laurie. There are other ballets I would have loved to dance with her as well. “Afternoon of a Faun” comes to mind and then, of course, she would have been spectacular in the role of the ballerina had I ever had the chance to dance the part I coveted more than any other, the role of Petrushka in the ballet “Petrushka.”

I’ll tell you this, if we get a do-over in life, my plan is to propose marriage to Laurie the second I see her, so what if I’ll only be 10 at the time! And then, of course, I’ll ask her to dance.

This year the classics

2012-01-11T08:51:00.001-05:00

Reading is a sanctuary for me. I suspect this is so for most book lovers. In addition to being a sanctuary, reading offers endless amounts of knowledge; endless amounts of emotional, spiritual, and physical experiences. The latter point might strike some as odd but read a book like Hampton Side’s Ghost Soldiers and you may notice yourself feeling physically drained at times.

I guess that is the wonder of reading, the all of the reader’s person is involved. And given that the world, thankfully, has an endless supply of books, one is wise not to miss the classics. It would be rather disingenuous of me to say I’ve read many classics, though I have gobbled up quite a bit of Dickens, Tolstoy, and Dostoyevsky. I am immensely glad I did not let the length of War and Peace peace deter me. When I read it (it is one of the greatest reads of my life) my only complaint, one I have with all the books I love, is it ended.

My instinct this year is to read more of the classics. I’m not sure why this is, though I have my suspicions. I am getting older and am well aware that the clock runs out, so, if not now, when? And then there is this. I wrote my first play in the 1970s when I was living in Brooklyn near Brooklyn Heights. I reached out to the writer Louis Sheaffer. He’d written a Pulitzer Prize winning two-volume biography of playwright Eugene O’Neill; a wonderful read. I asked him if he’d read my play and he said yes. I week or so later I went to visit him. He was a writer’s writer. Hard working, fully committed to the often exhausting craft that is the act of writing. While there were parts of my play he liked, it needed a lot of work. I asked him what advise he had for me as a writer. His answer remains emblazoned in my mind. “Whatever you want to write, read a lot of it. If you want to write plays, read a lot of plays. Novels, read a lot of novels.” He was right, I’ve learned more about writing from my reading than anywhere else.

And so, why the classics? Because, it is clear to me that writers like Dickens, Tolstoy, Henry James, Edith Wharton, Willa Cather, Shakespeare, Defoe, Melville, the Bronte sisters, Twain, Goethe and more, are the greatest teachers. While anything but easy, I love writing, and I want to learn.

And then, of course, there is the sanctuary of books. A place to go that, for the time I am there, I am away from daily life. When you are a human rights advocate, which demands that you hold people, companies, agencies, governments, government officials, publically accountable, you will be targeted. Usually, I have learned, not to your face. This is probably so because those who target you know they can’t win on the facts of the matter. And so they take runs at you behind your back. And while these behaviors a predictable, pointless, and will do anything but silence me, managing them can be exhausting. And so, what better sanctuary than reading a classic?

Get the black guy out of the White House

2012-01-03T17:21:00.001-05:00

Historians will some day say that the title of this essay accurately represents the largely unspoken and perhaps primary reason for the fanatical efforts on the part of the Republican Party to get President Obama out of the White House. I had thought to reference the Republican Party leadership only in the preceding sentence, but the silence of so many Republicans (with some exceptions) in the face of the not-so-subtle simmering racism fueling their party’s efforts to take back the White House and get rid of the black guy is sickening, and thus they don’t deserve a pass. Lincoln would be disgusted.

We have Republican presidential candidate Ron Paul, who fools some fools with his avuncular folksy countenance. Paul’s newsletters in the 1980s and 1990s have published such racist gems as: "Given the inefficiencies of what DC laughingly calls the criminal justice system, I think we can safely assume that 95 percent of the black males in that city are semi-criminal or entirely criminal" and "We are constantly told that it is evil to be afraid of black men, it is hardly irrational" and "Order was only restored in L.A. when it came time for the blacks to pick up their welfare checks." Paul claims he didn’t write these things and says he doesn’t agree. Are you kidding me? Are we as a people really so stupid that we believe him? Sadly, in more cases than we’d like to admit, the answer, it seems, is yes.

And then of course, we’ve got Rick Santorum who, in talking about Medicaid, SSI and food stamps in Iowa Sunday said, “I don't want to make black people’s lives better by giving them somebody else's money. I want to give them the opportunity to go out and earn the money and provide for themselves and their families." Then, of course, he later said he is not racist. And I suppose there are still fools who believe him and racists who believe in him because they know his I’m not a racist claim is merely Santorum’s attempt to cover his, well, why not, lily-white ass.

The fact there are racists among us should surprise no one. The fact they are running for president with support should both surprise and sicken all people. However, most disturbing of all? The dead silence on the part of leaders in both parties, and, perhaps even worse, the silence on the part of the media.

If there is anything that feeds racism, homophobia, sexism, anti-Semitism, anti-disabled, etc., it’s silence. Believe me, in my own efforts as an advocate for people with disabilities I see the damage caused by silence on many fronts. Silence from those who, like those running for the presidency (President Obama and John Huntsman excluded), would want you to believe they really really care.

It’s good to be alive

2012-01-01T16:30:00.001-05:00

Sometimes you don’t realize how sick you’ve been until you start feeling better.

Sickness, as I’m sure you know already, has many personalities. Nausea, fever and then some can jump you out of the blue and you know you’re sick. It’s clear as day. Nothing vague about it. Then too there are ailments like prostatitis, a swelling and inflammation of the walnut-sized prostate gland which sits comfortably, when it’s behaving, under the bladder of the male, like me for instance. Prostatitis can be caused by a bacterial infection and then there are times there is no bloody rhyme or reason for its appearance, other than to make you urinate frequently, so much so I swear I’ve worn shallow valleys in the floor leading from my sitting chair and bed to the bathroom.

What sneaks up on you, or at least it snuck up on me, is the toll lack of sleep takes on you. At first I sought to manage the symptoms myself, I’ve been through this before and so loaded up on Saw Palmetto (a great name for a gangster in case anyone’s looking for one), Stinging Nettle and Pygeum, but alas, my efforts were, as they say, too little, too late. And so it was that on the 23rd of this month I decided not to wait until my scheduled physical on January 4 and instead headed to the nearest emergency room for treatment: antibiotics and Flomax. By the time I went to the E.R. I’d been operating out of a state of exhaustion far longer than I realized, nearly two months truth be told.

It took awhile to get as sick as I was and it will take a while to feel better; I’m not out of the woods yet, but I can see the clearing. Today, this morning into early afternoon actually, I was able finally to get some uninterrupted sleep in two-hour doses. For more than a month the longest I slept without having to deepen the ravine as it were was an hour, more often than not, less than an hour. And so, this afternoon, for the first time in nearly two months, I felt rested, and, as a result, feel alive. And let me tell you, if there is anything I am sure of, it is this: it’s good to be alive.

Books read in 2010 & 2011

2011-12-30T06:19:00.001-05:00

I’ve always been curious about the books people read. It fascinates me because, I suppose, what draws the undivided attention of the human mind fascinates me, and because I’ve carried on a love affair with books for as long as I have memory. What people read tends to draw my undivided attention. I even joined a delightful website called Goodreads where book lovers share their reading journeys. Some years ago I took to the habit of keep lists of the books I read, memorializing their completion by noting the day I finished them.

I enjoyed all these books. Long ago I learned from my father that if, after some pages, the book didn’t interest me, put it down and move on.

Desiderius Erasmus, a Dutch humanist and theologian, said, “When I have money, I buy books. If any money is left over, I buy food and clothes.” I’m with you all the way, sir.

Here are the books I read in 2010 and 2011.

2011

1) “Intruder in the Dust” by William Faulkner 1-5-11

2) “The Children” by Edith Wharton 1-11-11

3) “House of Mirth” by Edith Wharton 1-31-11

4) “The Ghost Writer” by Philip Roth 2-10-11

5) “Jean-Jacques Rousseau: Restless Genius” by Leo Damrosch 2-22-11

6) “The Alice Behind Wonderland” by Simon Winchester 3-13-11

7) “The Tenants” by Bernard Malamud 3-25-11

8) “The Assistant” by Bernard Malamud 4-10-11

9) “The Natural” by Bernard Malamud 4-19-11

10) “The Fixer” by Bernard Malamud 4-28-11

11) “Dubin’s Lives” by Bernard Malamud 5-14-11

12) “A New Life” by Bernard Malamud 5-28-11

13) “Angle of Repose” by Wallace Stegner 6-24-11

14) “The Spectator Bird” by Wallace Stegner 6-28-11

15) “All the Little Live Things” by Wallace Stegner 7-3-11

16) “Crossing to Safety” by Wallace Stegner 7-10-11

17) “Shroud” by John Banville 7-23-11

18) “Mark Twain: A Life” by Ron Powers 7-29-11

19) “Troubles” by J.G. Farrell 8-5-11

20) “God’s Grace” by Bernard Malamud 8-8-11

21) “The Siege of Krishnapur” by J.G. Farrell 8-19-11

22) “The Singapore Grip” by J.G. Farrell 8-31-11

23) “The Trees” by Conrad Richter 9-7-11

24) “Girl in the head” by J.G. Farrell 10-4-11

25) “The Rebel Angels” by Robertson Davies 10-17-11

26) “Robert Louis Stevenson” by Frank McLynn 11-12-11

27) “The Edge of Sadness” by Edwin O’Connor 11-13-11

28) “The River King” by Alice Hoffman 11-16-11

29) “Time Will Darken it” by William Maxwell 12-15-11

30) “So Long, See You Tomorrow” by William Maxwell 12-18-11

31) “The Invention of Solitude” by Paul Auster 12-21-11

32) “They Came Like Swallows” by William Maxwell 12-26-11

33) “Washington Square” by Henry James 12-30-11

2010

1) "Arrowsmith" by Sinclair Lewis 1-4-10

2) "It Can't Happen Here" by Sinclair Lewis 1-18-10

3) "Dodsworth" by Sinclair Lewis 1-31-10

4) "Kingsblood Royal" by Sinclair Lewis 2-10-20

5) "Cass Timberlane" by Sinclair Lewis 2-19-10

6) "Elmer Gantry" by Sinclair Lewis 3-4-10

7) "Winesburg, Ohio" by Sherwood Anderson 3-15-10

8) "True North" by Jim Harrison 3-27-10

9) "The English Major" by Jim Harrison 4-5-10

10) "Blood Brothers" by Richard Price 4-7-10

11) "Wild Pitch" by A.B. Guthrie Jr. 4-10-10

12) "Returning to Earth" by Jim Harrison 4-19-10

13) "The Johnstown Flood" by David McCullough 5-3-10

14) "Widows of Eastwick" by John Updike 5-18-10

15) "The Centaur" by John Updike 5-31-10

16) "Three Soldiers" by John Dos Passos 6-27-10

17) "The 42nd Parallel" by John Dos Passos 7-?-10

18) "Child of God" by Cormac McCarthy 8-23-10

19) "Crack In the Edge of the World," by Simon Winchester 8-29-10

20) "1919" by John Dos Passos 9-6-10

21) "An Irish Country Village" by Patrick Taylor 9-16-10

22) "Big Money" by John Dos Passos 10-4-10

23) "Manhattan Transfer" by John Dos Passos 10-22-10

24) "Death in the Andes" by Mario Vargas Llosa 10-29-10

25) "Nemesis" by Philip Roth 11-4-10

26) "Exit Ghost" by Philip Roth 12-5-10

27) "The Humbling" by Philip Roth 12-9-10

28) "Everyman" by Philip Roth 12-13-10

29) "Indignation" by Philip Roth 12-19-10

30) "Mistler's Exit" by Louis Begley 12-25-10

31) "The Reserve" by Russell Banks 12-29-10

An advocate’s thoughts on accountability

2011-12-26T15:57:00.001-05:00

We are all, unless determined otherwise by a court or healthcare professionals, accountable for our choices, our actions; let’s call it, our behavior. None of us gets a pass, at least when it comes to our personal and professional lives, nor should we. When we are public servants, i.e. elected officials or employees (contract or otherwise) of state, federal and local governments, we are also accountable for our behavior. If we are members of non-profit agencies pledged to help some segment of the population, we are accountable for our behavior.

As I see it, my responsibility as a human rights advocate, is to hold people and agencies and governments and government officials accountable for their behavior, and to do so openly; bring the behavior out into the light of day. When the behavior is good and healthy, it deserves the accolades, the gratitude, the recognition. When the behavior is not good, not healthy, it deserves the response it will get, and it deserves to be publically recognized; people have a right to know. President Obama once said, “Sunshine is the best disinfectant.” True. Martin Luther King Jr once said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” True.

The price I’ve paid for my advocacy -I’ve paid and still pay some “bills” to be sure – pales in comparison to what those being denied their rights go through. I know too that there have been and are people, some of whom I like very much, who have been and still are very upset with me; angry with me. I take no pleasure in this, but I have no control over where the facts lead. And, for me, silence is not an option. If I worked for or knew of a company or agency that discriminated against people who were Gay or Lesbian or Transgendered, I would not be silent. If I worked for or knew of a company or agency that discriminated against people who were disabled, black, Latino, Jewish, Muslim, etc., I would not be silent.

There are also instances when people or agencies take my actions are personally. They believe, honestly I am sure, that my actions are aimed at them on a personal level. Not so. My actions are not aimed at anyone on a personal level. But let’s be unflinchingly clear about something; it doesn’t get more personal than when someone’s rights are being denied. And when I watch and experience this happening to others, I do take it personally. Perhaps this is a character flaw, that’s for others to judge, and I’m sure they will, and have. But it buckles me into tears sometimes when I hear of how inhumanely people are treated.

When I hear people have taken my efforts personally, I always think of a scenario along the lines of the following: A husband and wife are home one evening.

The husband says, “Some sonuvabitch cop gave me a speeding ticket!”

His wife says, “What was the speed limit?”

“Thirty.”

“How fast were you going?”

“Sixty.”

I very much doubt the cop wrote out the ticket as part of some personal vendetta.

And so what’s the moral of this story? Don’t speed. And if you do, and you get caught, don’t blame the one who caught you. If you weren’t speeding, if weren’t discriminating, if you weren’t trying to beat the rules, the laws, you wouldn’t be in the position you’re in now, would you?

My advice? Don’t speed. If you do, you’re likely to be held accountable. And that is as it should be.

Remembering my mother, Leona

2011-12-19T09:40:00.001-05:00

Every life includes experiences we never want to give back. Reuniting with my birth-mother Leona on the evening of January 8, 1987 in Stamford, Connecticut is one of those moments for me. Getting to know her over the years until she died 10 years ago today, even more so.

For some very understandable reasons she surrendered me for adoption seven days after I was born in New York City’s French Hospital on October 2, 1953. She told me once that she held me every second she could during those seven days because she knew that time together would have to last both of us a lifetime. Fortunately, she was mistaken. She was 19 when she got pregnant. Being a pregnant, single Catholic girl of Irish, French Canadian and, I would later learn, Mexican stock, walked you into a world of merciless judgment. That, coupled with the fact my birth-father was, or so he claimed, an unhappily married 39-year-old who was not about to help with raising a child, made my adoption inevitable.

My mother had the rare ability to recognize opportunities to truly touch the hearts of others that most people would miss. The sanctity of another’s humanity was never lost on her. Her compassion was limitless, her instinct for the wounded and the ignored, remarkable. I remember commenting once on the close relationship between Katherine Hepburn and Spencer Tracy. “That’s true,” my mother said. “They were very much in love. But does anyone ever think about what it must have been like for Tracy’s wife? My heart always broke for her.” Being old-school Catholic, Tracy never divorced his wife after he became involved with Hepburn.

On my first birthday after we’d been reunited my mother gave me a teddy bear, “to make up for the one I couldn’t give you when you were growing up.’

The day I married my second wife on September 12, 1991 was the only time my two mothers met. I did have two mothers. In my heart and soul their claim to motherhood was an equal one and I only use the terms adoptive-mother and birth-mother so the listener, or reader, can distinguish which is which. A quick aside: if you want to insult and probably anger someone who’s been adopted, ask them who their real parents are. All their parents are real, make no mistake about it. At any rate, this day was the one and only day they two of them met.

The wedding took place outside and was attended by perhaps 30 people. Everyone, save my adoptive-mother Virginia, was standing. She was in some pain and had a chair. We’d asked the minister, my first childhood friend in fact, William Damrow, to ask people to hold hands with the person next to them when the moment for the final vows arrived. People were video-taping the wedding and later, we watched the video that was taken from behind the minster. In the background my mother Virginia was on the far left of the group and my mother Leona was standing on the far right. When the holding-hands’ request was made, my mother Leona walked over to my mother Virginia and held her hand through our final vows.

Some say I’ve inherited the instinct for touching the hearts of others from my mother. I don’t know about that, but I do know I touched hers on a day that held a deeply special moment for the both of us. The French Hospital had been located at 330 West 30th Street between 8th and 9th avenues in Manhattan. It was built in 1928 by the Societe Francaise de Bienfaisance. It is now the French Apartments, but the words, Societe Francaise de Bienfaisance, remain carved in stone above the main entrance. On one of her last visits to the east coast my mother visited family in New Jersey. I drove down to pick her up and drive her back to my home in upstate New York. On the way back I drove into the city and pulled up in front of 330 West 30th Street. The two of us held hands as I said, “We’re back.”

“They always made me go through the back door,” she said. “I was from the home for unwed mothers.”

“Okay then,” I said, and promptly drove around the block to the back entrance. We both said, our voices a mix of defiance and pride, “We’re back.”

My mother Leona died in California of liver cancer 10 years ago today. On December 21, two days after she died, I received a package from her in the mail. In it was a gift-wrapped package about the size of a box a pen would come in. I called my daughter on the phone so we could share the moment together. I removed the gift-wrap to discover a narrow black box. I opened the box. In it was a Saint Christopher’s Medal. Legend is a child asked Saint Christopher to carry him across a swollen fast-moving river. Christopher, said to be a large and powerful man, carried the child across the river to safety. It was then the child revealed himself to be Jesus. Then, according to legend, the child vanished. Saint Christopher is the saint of safe travel through life. I turned the medal over and read the engraved words on the back. “Peter, I will always be in your heart. Love, Mom.”

She is always in my heart and in every stride and breath I take.

Not long before she died I asked her if she had any advise for me. She said, “Yes. Be good to yourself, Peter.” I’m trying, Mom. I love you and miss you my whole wide world.

I Remember Homelessness

2011-12-16T10:43:00.001-05:00

We didn’t call it homeless when I was out there, we called it living on the street. Same thing. When night, rain, sleet or snow fell, you had no sure place to go, and when winter sunk its teeth into your bones, everything got worse. And then there was the never ending struggle to keep your stomach full and body clean. I received medical treatment twice for hunger pains. Imagine the pain you’d be in if someone set fire to your stomach. That’s about the feel of it. My time out there was a couple of years in the 1970s. But, once homeless, the fear that it can happen again never leaves you, at least it’s never left me.

The world’s view of you changes too. When I was in my early teens I danced a lead role with the Joffrey Ballet and was viewed as a child prodigy in dance. But, in 1969, when my aunt, grandmother and father died, in that order, in a matter of months, my mother placed me in reform school on a PINS (Person in Need of Supervision) Petition, which, in those days, often meant a family saying to the court, I don’t want him, you take him. My world had changed, forever.

I was released to a half-way house a year later and then, when my mother wouldn’t take me back, I was given the choice, back to reform school or live on the streets. I chose the streets believing I was choosing freedom. I was wrong. Homelessness is its own from of brutal incarceration from society. It didn’t escape my notice that the very people who no doubt would applaud or did applaud me when I was on the stage at City Center now walked by me as if I was worthless, or, even worse, invisible.

Homelessness can strike at many who currently experience the possibility of homelessness as something that happens to others. It’s the it can’t happen to me syndrome which is, in my view, a normal and helpful syndrome that allows us to get up and take part in life. But the fact of the matter is this, homelessness, like violent crime and disease, doesn’t give a damn about syndromes, skin color, religion, ethnicity, belief-system, religious persuasion, gender, or age. I recently read a story about Queen Jackson, a 60-year-old Colorado woman who despite having worked for the state of Colorado, now finds herself homeless. To say that we live in a country that is too wealthy for homelessness and hunger to exist is both a statement of fact and spitting into the wind. Why this latter point? Because the cold hard truth is a lot of people simply don’t care. Many willingly voice concern unless they’re actually called upon to act on it. Few will openly say they don’t give a damn, but, as they say, actions, and facts, speak louder than words: homelessness exists in a country where there is no humane reason for it. And a country in which some like to saunter about proclaiming their Christianity in chest-pounding terms when, more often than not, their proclamations of faith are rooted in deceit and greed.

Whatever one’s view of Jesus, he was kind and loving and compassionate and would be out there doing all he could to rid the entire bloody world of homelessness, of poverty.

Hunger is a harsh master

But the bottom line is, many don’t care. The National Alliance to End Homelessness has produced a well-researched report called the State of Homelessness in America 2011. If one has an iota of compassion in them a read of the report’s executive summary is a chilling and heartbreaking experience. For me, it struck home in a deeply personal way when I read, “It is widely agreed upon that there is a vast undercount of the number of young people experiencing homelessness.” I was 17 when I was first in the street. And when you’re out there, you do what you have to do to survive; I lived for more than one week on several cans of dog food and a box of milk bones. Hunger is a harsh master.

The reality is, many don’t care and many in congress don’t care. You’ve got Republicans openly protecting the wealthiest 1% in the country from experiencing even a sliver of a tax increase while at the same time, food stamps and rental subsidies are being slashed across the country. And while the Democrats are more verbally supportive of the poor in this country, it’s an easy stance for them to take when they know there’s no chance of passing any real legislation would help the poor. It’s easy to voice support for something you know is not possible. I strongly suspect their support of the poor would change in tone if it looked like a bill helping the poor would require an increase in taxes on the 1%.

As Harvard Professor Lawrence Lessig points out in his new book, Republic, Lost, money’s corrupting influence in Washington is a two way street. The most commonly understood is the that big donors contribute to elected officials in both parties! in order to get their way, like keeping tax breaks and more. A form of blackmail, if you will. But, as Lessig points out, the blackmail (my word, not his) works both ways. Members of Congress will tell the big donors, if you don’t contribute handsomely to my campaign, I won’t protect your tax breaks.

And who gets crushed by all this, the American people, the disappearing middle class, and the poor, the homeless, the folks so many don’t give a damn about.

You could be next

I know that the more than 1,500 regular monthly readers of this are cut from the kind of cloth that does care, you wouldn’t be regular readers of this blog were this not so. And for those of you just stopping by, I hope you will care and help as well. Help at a food pantry and donate to a food bank, or reach out to the National Alliance to End Homelessness and find out how you can help.

Remember, when it comes to homelessness, you could be next.

When a dog dies

2011-12-10T16:00:00.001-05:00

My dog Milo died peacefully in my arms today a few minutes before 12 noon. He was in the neighborhood of 16 or 17 years old.

Milo and I had been together since 1998 when I adopted him from a shelter. I was surprised that unlike all the other dogs he wasn’t barking. “Wow, he’s doesn’t bark,” I said to the shelter staff who chuckled, smiled, and said, “Oh, don’t you worry, he barks.” He was right. Milo was a brindle-colored beagle mix and next to his steadfast commitment to eating all the food on planet earth, barking was his favorite pastime. Well, that’s not entirely true. His favorite pastime (next to eating) was, in truth, to be near me. Whichever room I was in, Milo would be curled up next to me. If I got up from my writing table and moved to another room to read or watch TV or listen to music, he’d follow me in in a matter of moments, circle over his landing spot, and land. Throughout all the years we were together this pattern never changed, though as he got older, he’d let out a groan of annoyance when I’d change locations and I swear once or twice I think I caught him shooting a glare in my direction.

Milo was my friend, a member of my family. In fact he was named after the French Canadian side of my birth-mother’s family. I can tell you now that I know quite a few people whose deaths would bother me far less. When the veterinarian, a remarkably compassionate woman named Joan Puritz of Crescent Pet Lodge in Oneonta injected Milo with a drug that would and did allow him to die peacefully, my insides collapsed and there was nothing to do but hold him close, and say thank you thank you thank you out loud through my sobbing. Thanks to the help of friends I was able to pay to have him individually cremated and when his remains are ready, he will come home, where he belongs.

I don’t know that I am mystical by nature, maybe, I’ve not really given it much thought. But I do know this, when I got home today, exhausted, spent, perhaps somewhat stunned, certainly heartbroken, I went for a walk with my remaining two dogs, Charley and McKenzie. When we came back inside I gave them fresh water, stoked the fire, and sat down to rest. Soon both of them were curled up by my feet, thank God. But there was noticeably less life in the house, less energy. Milo’s living breathing absence was real. Living beings really do have energy and when they die, the energy leaves, it is glaringly obvious.

Today talking to Dr. Puritz and her delightful and deeply compassionate assistant Lisa, I mentioned Milo’s quest to eat all the food on planet earth. “How close did he get?” asked Lisa, her question a gift to me, offering me a moment of kindness and connection that moved my heart and won a permanent place in my memory. “Pretty close,” I said. “In fact, if you call some area food pantries you’ll find they’re nearly out of food.”

I used to enjoy saying, Dogs are people too. I don’t think I’ll say that anymore because it dawned on me today that the phrase is rather insulting to dogs.

I love you my whole wide world Milo. My heart hurts. Thank you thank you thank you.

Remembering Frank Pierce

2011-12-08T06:40:00.001-05:00

Frank Pierce died three years ago today. The kindness and compassion Frank showed me and the many he loved and cared about was genuine and loving and sincere beyond description. Those who knew him knew a man whose caring and commitment to others, brain injury survivors and their loved ones were what I witnessed the most, was matched by few and outdone by none. He touched the hearts of those who knew him, including mine.

Not long after Frank died I was talking with his wife, Jane. I told her how Frank would say, Love you, brother, to me, and I thought it wonderful that was an expression he used with people. “No,” Jane said, “That was just for you.” Like I said, Frank touched my heart. He touches it still.

Frank left this world, but not our hearts, two years ago today. Having said that, I am republishing a piece I wrote on December 9, 2008, one day after Frank died. I loved and love Frank very much.

- Peter

LOVE YOU BROTHER

Remember to say I love you to those you love. I don’t know what it is about those three often maligned and misused words, I love you, that makes them as special as they are, but I do believe that when they are meant, they should be said. Not only to the many who deserve to hear it, but by the many who deserve to say it.

My friend Frank died at 7:35 yesterday morning with the two he loved and who loved him the most by his side. Like many others, I loved Frank. And whenever I’d say, Love you Frank, he’d smile at me and say, Love you brother. And I knew he meant it. I can still hear his voice saying those words to me, Love you brother. He meant them too, all three of them.

The words I love you are remarkably hard for some of us to say. For still others, they are difficult to hear. Still others avoid the phrase because it is has been used as a tool for manipulation and, in some cases, cruel manipulation, in too many scenarios.

However, I think the only necessary guideline for saying it is honesty. Say it if you mean it. Your history, those who betrayed you, used the phrase to manipulate you in one way or another, denied your ever hearing the phrase, none of these people deserve so much control over you today that they stop you from saying it at all.

A woman I love very much said to me recently, “Peter, you love everybody.” Not true. Not by a long shot. Rest assured, there are people I don’t love and there I even people I dislike, some intensely. But what I do believe in is letting those you feel love for know it. While there is certainly such as thing as too much hate in the world, there is no such thing as too much love. However, there is such a thing as not enough love – and not enough expression of the love that is there.

The first game the Yankees played after Yankee captain Thurmon Munson’s tragic death in 1979 was in Yankee Stadium against the Baltimore Orioles. The Orioles catcher was Rick Dempsey, a former Yankee and back-up catcher for Munson. The Yankee manager was Billy Martin. Dempsey sent a note to Martin in the Yankee clubhouse before the game. In it he told Martin that he, like so many others, loved Thurman and he, like so many of us, did not always remember to tell people he loved that he loved them. And so, in this note, he told Martin that he loved him.

And so if you love people in your life, whether you love them as friends or more, tell them. Use the words I love you - all three of them. I would ask the few of you who might feel saying I love you is a wimpy thing to do why saying it is so hard for you to do? Were it an act of weakness, to say them, it ought to be easy, no?

Take care of yourselves in life. Love each other as best you can. And when you do, say so.

I am going to miss you terribly, Frank.

Love you brother.

Shape shifting…

2011-11-29T16:58:00.001-05:00

Shape shifting rhythmic pastimes and I’m on a roll again

Seen sunrises sunsets moving across darkened lines hopes rising

Breathing morning air smiling quietly a new day dawns again

Shape shifting in the early hours and I’m slow stepped again

Felt the pulsing tones of up and down blood flowing

Quiet night drifts in and sweet sleep beckons again

Shape shifting I’m with my street boys on the stoop talking again

Magic first love striding by my side glistens like sunlight gold

Climbed from bed early morning eyes set on writing again

Shape shifting seasons come and seasons go then do it again

Yet a lifetime’s motion has a beginning and an end

And with all that’s come and gone I’d do it again

Without book

2011-11-25T11:05:00.001-05:00

It is one of the most uncomfortable unsettling experiences for me. That gap between books. I finish one and then, for some inexplicable reason, finding another one to land in is a problem. It’s like trying on articles of clothing and nothing seems to fit.

I am happy to report that this does not happen to me as much as it used to. But when it does, oh my, the stress. When I am without book it’s almost as if I am being asked to get through the day without air to breathe. There are times when I understand why finding that next book is a problem. You get drawn into one author’s world and then find transitioning to the next author somewhat tricky For example, a few years ago I read almost everything by Charles Dickens. Anyone who loves to read will experience a gift from heaven if they read Dickens, which means, for American readers anyway, slowing down and taking your time with each sentence and then, if you do, his dazzling prescience, comprehension and understanding of life from all angles emerges and you understand why he is, without question, one of the greatest writers that has ever walked the earth. But when I finished my time with Dickens, I went through a rather uncomfortable period of who to read next. Who on earth do you turn to after Dickens?!

One of my common reading patterns is to lock into writers who strikes my fancy and then read a lot of what they’ve written. Last year I gobbled up nearly everything John Dos Passos wrote. This year it was all the books written by Bernard Malamud and then books by a writer who is now one of my favorites and who seemed to understand life with the same kind of global prescience and comprehension as Dickens: J.G. Farrell. But, oh my, those periods of time between books. Nerve wracking. Like being adrift at sea without a compass.

For as long as I have memory I’ve loved books. Though when I was about eight or so, I found myself convinced that I was not, like my mother and father, a real reader. My father taught English literature at Columbia University and my mother had been one of his students after World War II. My father had served in the Army and my mother had been in London during the war. Her first husband was a pilot in the RAF. Needless to say, they loved to read.

And so at age eight I went to my father’s room. He was sitting at his desk marking papers. Behind him was a ceiling-to-floor bookshelf filled with books, to this day one of the most beautiful sights in the world as far as I’m concerned.

“Daddy, I don’t think I’m a reader like you and Mommy.”

He sat back in his chair and gave me a gentle smile. “What makes you say that?”

I looked at the wall full of books. “Because every time I start reading one I can’t finish it.”

“What makes you think you have to finish it?”

I was completely taken off guard. Of course you were supposed to finish the book. Wasn’t that some kind of rule? “Aren’t you supposed to finish’m?”

“No no. You’re thinking about school assignments. We’re talking about reading. Don’t you think the author has some responsibility to keep you interested?”

I had to admit, he made sense. “I guess so.”

“Okay then,” he looked at the books behind him and back at me. “Pick ten books that seem interesting to you. Forget page numbers. Read them until you don’t want to read them anymore. One day you’ll look up and realize you finished one.”

My father gave me the world of reading and the freedom to explore that world. Books have been my joy and refuge throughout my life. Through my days of homelessness (I would nick them off the paperback racks in drugstores) I’d always have one stuffed in my back pocket. Do I finish every book I start? Not at all. My book shelves are filled with books sprouting book marks. And while I still don’t like being without book, the good news is there is no shortage of books and, for those of us on fixed incomes, there are libraries.

By the way, I finished my first book a week or so after talking with my Dad. I still have it: “The Folded Leaf,” by William Maxwell.

Memo to OWS: More water and more water still

2011-11-20T11:47:00.001-05:00

Dr. Martin Luther King Jr. once accurately compared the use of non-violent protest in response to injustice to putting water on fire. He said if you throw a bucket of water on a fire and the fire doesn’t go out, it doesn’t mean water doesn’t put out fire. It means you need more water.

It seems to me more and more of this water is being used by the nationwide-and-beyond Occupy Wall Street movement. Some of these actions are achieved in stunningly creative and effective ways. One example would be the emotionally powerful response exhibited by hundreds of students from the University of California, Davis after police pepper sprayed students who were doing nothing more than sitting on the ground in support of OWS. The video of this brutality has been viewed well over half a million times at this writing. University Chancellor Linda P.B.Katehi’s authorization to use police force in response to this non-violent student protest has resulted in justifiable calls for her resignation. You can’t call in law enforcement in full riot gear and then act surprised when they use pepper spray which is essentially what she is doing.

Hundreds of students inflicted a breathtaking display of the power of silence when Katehi walked three blocks to her car after her press conference.

What is becoming increasingly clear is the fact that this movement will not be stopped by pepper-spray or by any other acts of authority-sanctioned violence. The OWS movement is not running out of water. Civil rights movements like this never run out of water. In this case, this truth is stronger than ever. 99% is far bigger than 1%. In other words, the numbers and the water supply are on our side. After all, they’re always on the side of justice.

Inexcusable silence in the face of police brutality

2011-11-19T08:37:00.001-05:00

I can tell you from firsthand experience that there are quite a few good and decent and blazingly courageous members of law enforcement. In fact, it was members of the NYPD that saved my life when I was held up and shot in the head in 1984. Nevertheless, facts are facts. From Oakland to NYC to Seattle and back there have been and continue to be glaring examples of police brutality inflicted on non-violent protesters who are doing nothing more than exercising the rights our constitution gives them, not to mention drawing attention to the fact the freedom that is supposed to come with being a citizen of the United States of America is slowly but surely disappearing. Not to mention the fact that the 1% are running the show and are clearly behind the violent response.

And much of the mainstream media is in bed with the 1% because the mainstream media is owned and operated by the 1%. Close to 30,000 New Yorkers marched in NYC the other night. Try finding that in mainstream media. You’re living on another planet of you think the majority of the mainstream media isn’t as invested or nearly as invested in squashing the Occupy Movement as big business and Washington (but I repeat myself) is.

When you see American veterans being physically assaulted by law enforcement, there is silence from the White House and Congressional leaders. When you see 84-year-old women like Dorli Rainey drenched in pepper spray there is silence from the White House and Congressional leaders. When you see non-violent protesters being beaten, doused with pepper spray, punched, trampled by those members of society who are supposed to protect them, the silence of our country’s so-called leaders is deafening in its support for the ongoing brutality.

Dorli Rainey after being doused by pepper spray by Seattle PD on Nov. 15 2011

The current silence of those in Washington as well as the silence of so many leaders in states and cities across the country when it comes to the violence being inflicted on non-violent protesters is no different than those who remained silent when Alabama’s governor George Wallace and Georgia’s governor Lestor Maddox waved the banner of racism; it is no different than those who remained silent when Birmingham Alabama’s Bull Connor turned fire hoses and police dogs loose on non-violent protesters including children.

As Dante Alighieri said: “The darkest places in hell are reserved for those who maintain their neutrality in times of moral crisis.” Many of our nation’s leaders are booking rooms in hell as we speak.

KAC files grievances with NY State agencies

2011-11-11T10:27:00.001-05:00

The Kahrmann Advocacy Coalition this week filed formal complaints with the New York State Department of Health and the New York State Commission on Quality of Care for People with Disabilities after receiving reports that agencies overseeing the Traumatic Brain Injury Waiver in Long Island and New York City are taking a dangerously long time approving treatment plans for waiver participants. Moreover, it appears these agencies are often non-responsive to calls from waiver participants and are not providing the services they are required to provide while participants are waiting for services.

If these reports are accurate and it certainly appears they are, the behavior of these RRDCs are putting the lives New Yorkers with brain injuries at risk. Both the DOH and the CQC have indicated they will investigate these complaints.

It is important to note that this is not the first time KAC has warned DOH as well as the Traumatic Brain Injury Services Coordinating Council that the lives of waiver participants are being placed at risk.

The RRDC for Long Island is Self Initiated Living Options, Inc. Suffolk Independent Living Organization (SILO) locate at 3680 Route 112, Suite 4 in Coram, NY 11727. Their phone number is (631) 880-7929. The RRDC for New York City is Visiting Nurse Association Health Care Services d.b.a. VNA of Staten Island located at 400 Lake Avenue in Staten Island, NY 10303. Their phone number is (718) 816-3555.

Messages have been left with both organizations voicing concerns over these troubling reports.

A win for all NY TBI Waiver Participants

2011-11-08T11:16:00.001-05:00

As a result of the relentless pressure brought to bear on the NY State Department of Health by the Kahrmann Advocacy Coalition, several sources across the state this week confirmed that last month the DOH instituted a form letter that will inform TBI Waiver complainants of the results of their complaints.

The letter will identify the content of the complaint received, the fact the investigation was carried out, whether the complaint was or was not substantiated, and, if substantiated, the steps that were taken as a result. Moreover, if the complaint is about the Regional Resource Development Center – the RRDC is the agency contracted with the DOH to oversee the waiver in regions throughout the state which includes investigating complaints - or the investigation is not within the RRDC's abilities, the complaint will be forwarded to DOH for investigation. This is a huge win for the advocacy community and for all New Yorkers who live with brain injuries.

KAC members who relentlessly pressured the DOH to institute a policy of informing complainants of the results of their complaints deserve the heartfelt gratitude of all who live with brain injuries and their loved ones. This change would not have come about were it not for their efforts.

It is also very important to make note the following. This confirmed information did not come from Deputy DOH Commissioner Mark Kissinger, nor did it come from anyone in the DOH in Albany. This is important to know for a few reasons.

It is very likely the last thing the DOH in Albany wants to do is give credit to any advocacy group for this policy change.
It is very likely the DOH did not publicly announce the change because in doing so they would have to admit their policy of not providing complaint results has been unjust and immoral all along.
And just to fire a warning shot across the bow of the good ship DOH, don’t even think about linking this change to the fact the Brain Injury Association of NY State’s contract for answering the complaint line ended as of October 1. BIANYS was never the reason complainants weren’t informed of the results. The sole responsibility for that inhumane policy rests squarely on the shoulders of the DOH.

The care-less leadership in NYS’s DOH & TBISCC

2011-11-07T19:32:00.001-05:00

I think I’ve reached the age where if someone is going to lie to me, the least they could do is make a little effort and be halfway good at it. Bad enough there are irresponsible, unethical people who have power over the lives of others, worse when those people lie and make the rules up as they go along, endangering lives of others in the process.

A November 5 article in the New York Times about the frightening state of affairs in New York State is chilling. It also accurately reflects the kind of sloppy sub-standard oversight the New York State Department of Health has brought to the state’s Traumatic Brain Injury (TBI) Waiver

It is a well known fact that the DOH refuses to tell people who file complaints related to the TBI Waiver the results of their complaints. They never have. In fact, several Regional Resource Development Specialists, DOH contract employees who oversee the waiver in various regions throughout the state, have told this writer and others they are instructed not to provide the results. Until recently when their contract to answer the complaint line ended, even the Brain Injury Association of NY State was never informed of the results.

This kind of mangled dysfunction may explain why Deputy DOH Commissioner Mark Kissinger reminded me last week of the comedian Richard Pryor. Pryor used to tell the story of how his wife caught him in bed with another woman. “You gonna believe me or your lyin’ eyes?!” Pryor exclaimed. And so it was that when last week I emailed Mr. Kissinger asking – again – when the DOH was going to inform complaints of the results of their complaints, he wrote back saying the DOH does inform complainants of the results! Like I said, if someone is going to lie to me the least they could do is make an effort not to sound, well, like a fool. And so, I sent him the dates of complaints I filed in 2010 and 2011 and am still waiting for the results. I would be remiss if I didn’t tell you that a freedom of information request I filed this summer with the DOH asking for the results of my complaints was denied.

And then of course we have the chair of the Traumatic Brain Injury Services Coordinating Council Michael Kaplen who will never remind anyone of Richard Pryor. Kaplen, whose term on the council expired in 2004, still clings to his seat and chairmanship like his life depended on it. His true colors showed during the September 12 council meeting when he immediately moved to adjourn the meeting after the council was publicly informed by this writer that the quality of lives and the lives themselves of waiver participants were at risk because of the DOH. And, when the DOH and New Yorkers with brain injuries could benefit from a TBISCC if it did what its supposed to do, provide proposals to the DOH to better the lives of New Yorkers with brain injuries, Kaplen cancelled the council meeting scheduled for November 15 and provided no follow-up date.

Neither Kaplen nor the DOH will explain the reasons for the cancellation. It has become clear that most if not all council members were given no explanation of the cancellation either.

Let me be clear, the TBI Waiver and the TBISCC are critically important to the lives of New Yorkers with brain injuries. They just need to be run by people who give a damn and who are inclusive in their approach.

Two things: if people suffer and or lose their homes or lives because of the actions or inactions of the DOH, those in the DOH should be charged, tried, and, if found guilty, jailed. And if the DOH wants to, say, take one small step in the right direction, it might be interested to know that the New York City number it now gives out for the TBI Waiver complaint line belongs to someone who hasn’t worked for them in quite some time. And that’s no lie.

Chasing Home

2011-11-05T09:39:00.001-05:00

Always for me there is the specter of homelessness. Once you’ve been homeless it is a possibility that lurks in the shadows of life.

Years ago I was homeless for on or about two years and the possibility of finding myself homeless again has once more raised its head.

Some background. The majority of my homeless days were spent in New York City. I was in my teens. It all happened quickly. My father died on August 16, 1969. I was 15. Sixteen weeks later my mother put me in reform school on a PINS (person in need of supervision) petition. I was released 14 months later to a half way house called the Medgar Evers Boys Residence on East 18th Street. I got into a fight. My mother was called and told there were three options for me: I return home, return to the reform school, or I could, as they said in those days, hit the streets. She told the caller she didn’t want me and hung up. Rather than giving up my freedom I hit the streets. For anyone inclined to throw rocks at this decision, trying life without freedom, then talk to me.

If you’ve ever been homeless you can’t help but believe your ability to keep your home is always at risk. You feel, to varying degrees, sometimes accurately, sometimes not, that your home, that place of sanctuary that all people deserve, is vulnerable. And sometimes it is. When you’ve been poor, and I mean poor, you are well aware that any economic comfort you are experiencing could be temporary. Until 2008 when I lost my job because I would not remain silent when people with disabilities – brain injuries in this case – were being denied their rights, including their right to be treated with respect, I could go food shopping at the market and fill my cart without having to think about the cost. There was not a single time I went shopping when I did not consciously remind myself not to take the gift of my food purchasing power for granted because I knew it could come to an end. I never did and it did.

Not surprisingly more than one person said If you’d just kept quiet you wouldn’t have lost your job. True. But, as I explained to them, you can’t on the one hand say you are an advocate for equal rights and then, when the going gets tough, clam up. There are real reasons Dr. Martin Luther King Jr. is one of my heroes and it was King who said: “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” There is no amount of money in the world, nor is there any threat to my home or my life that will make me fall silent when people are being denied their civil rights, the right to be who they are safely in the world which includes equality by the way. I don’t care if the bigotry comes in the form of racism, anti-Semitism, homophobia, sexism or if it aimed at people with disabilities, and so on. My remaining silent is not on the table.

Being homeless is something you never forget. I remember dumpster diving, although it wasn’t called dumpster diving back then. It was called looking for food to eat. You learned when restaurant’s threw out their food at the end of the day. And if you were a fast runner, and I was, very, you’d wait until the bread trucks dropped brown bags filled with fresh rolls just outside the door of a bakery or deli in the wee hours of the morning, swoop in, grab the bag, and haul ass, usually to deep within some abandoned building where you could chow down with your mates, if you had any. If you had enough loose change you could get a cup of coffee, pick up a couple of cigarette butts from the street, and, in no time at all, you were fully embraced by the comforting albeit inaccurate belief that still-warm rolls and coffee and a good smoke were heaven on earth.

And so now in soon to be 2012 I once again find myself in a precarious position on the keep-a-home-of-my-own front. I must move from where I am as early as April 1 and not later than May 1 of 2012. I am on disability and have a Section 8 Voucher that helps with the rent, though the system, depending on which New York county you’re living in, offers various forms of ruthlessness. Where I am the maximum allowable rent for a one-bedroom for one person is $556 if all utilities are included, which, as we know, is highly unlikely. If utilities are not included then they apply a utility calculation which means you must get a place with a lower rent you’ll need money for the utilities. This makes sense until you learn that your contribution to the rent, which is one-third of your income (I’m fine with that) remains the same. In other words, the rent subsidy gets lowered, and the person on the fixed income’s overhead increases. If you are brazen enough to rent a two-bedroom, the skew the utility figures so the maximum monthly rent you can choose is something like $365!

I’ve already begun looking, the hope being a small house, cottage, mobile home, cabin, with, if I am lucky a washer-drier hook-up and, if I am very lucky, a woodstove. Why these two things? Simple. I can’t afford paying for laundry and the woodstove keeps me going outside and exercising and, frankly, it means less money for oil companies.

However, as you might imagine, the cost of moving and the cost of security in a new place is another ball of wax entirely. If I stay in the county I’m in, there is a chance, though no guarantee, the Department of Social Services will help with security. There is no help with the cost of moving. If I move to another county or to another state, I’ve looked at New Hampshire and Western Massachusetts, it is not likely the welcoming state or county will help with security and moving costs because to take you in in the eyes of those who make the rules (how do you spell 1%?) is something believed to be burdensome. So, if I want to move I’ll need money for security and moving expenses and with many landlords understandably asking for things like first and last month’s rent in addition to security or two months security, that’s quite a vig, and not one I can make on my own. Moreover, neither Section 8 or New York State’s Traumatic Brain Injury Waiver, which I’m on, will help with security or moving costs. We’re talking several thousand dollars I’m sure.

A couple of friends have begun talking about fund raising to help me; the whole of these circumstances makes me want to crawl under the blankets and go to sleep in the hopes that someone will wake me when it’s over. Thank God for my books and my dogs and my friends and thank God for my sobriety.

U.S. Sailor shames Oakland Police and the 1%

2011-11-02T16:09:00.001-05:00

Every once in awhile each of us is blessed with witnessing a fellow human being displaying so much courage and integrity, so much heart and soul, that our hearts are moved and our eyes wet up and we are reminded that there are many among us who know and believe in freedom and equality, in the right to life, liberty and the pursuit of happiness for all people. All people. Not just the 1%. Today while taking a break from writing I saw a clip of a member of the United States Navy showing what being an American is all about while the Oakland Police, controlled by the 1%, show what being an American is not about.

With rubber bullets and tear gas swirling all around him, this sailor, holding a veterans for peace flag in one hand and the United States Constitution in the other, did not so much as flinch.

Reports on the Web reveal this occurred on October 26; it is chilling that the mainstream news media barely whispered a word of it. But as a recent blog post here pointed out, the mainstream media in this country is run by six corporations: Time Warner, Walt Disney, Viacom, Rupert Murdoch's News Corp., CBS Corporation and NBC Universal. In 1983 the media was run by 50 corporations. Not the direction a free society wants to be going.

As each day of the Occupy movement passes and the media’s lack of coverage and in some cases, skewed coverage, like that of Fixed News, continues, the real power and patriotic muscle of real Americans becomes more and more evident.

We shall overcome.

Memo to OWS: Occupy Media

2011-11-01T07:40:00.001-05:00

Save for foreign publications like The Guardian and some spotty coverage on our side of the pond, the American media seems to be engaged in a conscious effort to contribute to the stifling of what is essentially a national and increasingly global non-violent human rights movement called Occupy Wall Street. One exception has been Current TV’s Countdown with Keith Olbermann.

The sickening truth about the American media would seem surprising until you learn that six corporations control the media, meaning, they are owned by the one percent. The six corporations are: Time Warner, Walt Disney, Viacom, Rupert Murdoch's News Corp., CBS Corporation and NBC Universal. It is frightening and eye-opening to realize that in 1983 50 corporations ran the media.

The OWS movement is going to be a long one. Given the one-percent's ruthless hold on power and their willingness to wield that power (note the violent responses by certain law enforcement agencies along with increasing reports that the New York City Police Department is now urging and or transporting mentally ill homeless people and homeless drug users to Zuccotti Park to undermine OWS) it is likely there will be more bloodshed and lives lost.

In my view it is time for OWS to bring its message to the media. Occupy the NY Times, the Daily News, the NY Post, the Washington Post, the LA Times, and more. Occupy CBS, ABC and NBC. Just as it is the government’s job to make sure our system of capitalism is not, as Michael Moore recently pointed out, a rigged game, it is the media’s job to report what is going on in the country. If these folks aren’t doing their job, then occupy them too.

And yes, We Shall Overcome.

Occupy Oakland: U.S. Marine fighting for his life

2011-10-26T16:55:00.001-05:00

Moments ago I broke down in tears when I saw the picture of a 24-year-old U.S. Marine Iraq veteran moments after he was struck in the head by a gas canister fired by the Oakland Police. Scott Olsen, 24, of Daly City, California, a member of Veterans for Peace, suffered a skull fracture and brain swelling. Last reports are this young man is in critical condition fighting for his life. The sickening size and scope of this brutal injustice will be all the more so if Mr. Olsen loses his fight to live. It would mean the first person to die in the Occupy Movement is a United States Marine; young man who fought for his country.

The Occupy Oakland protesters carry away Scott Olsen after he was hit by a tear gas canister shot by the Police, near the Oakland City Hall on October 25, 2011 in California. AFP Photo / Kimihiro Hoshino

The violent response to this peaceful movement is driven by the one percent; I would urge the honorable members of law enforcement (and there are many) to refuse to follow any order asking them to inflict violence on their fellow Americans. Responding with this kind of military violence puts those engaging these acts in the same boat as the thugs now carrying out the orders of the dictator in Syria.

It is also time for the president and other elected leaders to step up and condemn this brutality.

We must fill the streets with more people, it is our duty as citizens. In the meantime, pray that this young man recovers.

A sleeping giant: the American People

2011-10-26T15:22:00.001-05:00

Whether he actually said it or not, the line attributed to Japanese Admiral Isoroku Yamamoto after the attack on Pearl Harbor, "I fear all we have done is to awaken a sleeping giant and fill him with a terrible resolve" aptly applies to the American people who are rising up all over this country that I love with all my heart. In fact, the Occupy Movement is living out exactly what the founding fathers would have wanted them to do. The first amendment reads (italics mine), “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”

The founding fathers would tell you it is incumbent upon each of us as an American to peacefully assemble and petition the Government for a redress of grievances. As author Naomi Wolf (arrested for standing on the sidewalk outside a Huffington Post event in New York City) accurately pointed out in a recent interview on Countdown with Keith Olbermann, the right to peacefully protest is something Americans would be expected to do by the founding fathers.

And so it is that thousands around this country are doing exactly what the founders of my country would want them to do. The fact they are being met with violence by the very people that are sworn to protect them establishes beyond a reasonable doubt the legitimacy of their protests and further establishes why these protests need to grow and will grow. We must be careful too not to villainize all of law enforcement; they are doing the bidding of the one percent or those doing the bidding of the one percent. Ask yourself this question, every time you’ve seen some elected official or talking head demeaning the Occupy Movement is the person in the one percent or 99 percent?

Those who respond to these protests with bogus excuses to break them up (we need to clean up, people are complaining) and those who seek to label these extraordinary Americans as a bunch of nuts are again either members of the one percent or, for all intents and purposes, owned by the one percent, servants essentially.

There is little doubt in my mind that the protests will grow as will the dictatorial and increasingly violent opposition. There is little doubt in my mind that the behavior of the latter will cost lives. But we Americans are a scrappy lot, we will not fold and fade away when our freedom and equal rights are at stake. It may seem that the one percent has all the power and they do have nearly all the money, but so it was in a very real way for George Washington on some very cold lonely nights when he realized his rather ragtag Continental Army was up against the most powerful army on earth. He didn’t give up, his army didn’t give up, and, as a result, the United States of America became a reality.

And so it is that the Occupy Movement will not give up, and because of this, we will prevail, which means equal rights will prevail, which means the United States of American will prevail, and our founding father’s would be very proud of us.

NY State needs and deserves its TBI Waiver

2011-10-22T10:13:00.001-05:00

If you take a Rolls Royce, arguably the best made car on the planet, and put a lousy driver behind the wheel, the car is going to have mishaps, accidents, and probably have a tough time staying on the road. This does not mean you get rid of the Rolls Royce, it means you get a better driver. And so it is with New York State’s Traumatic Brain Injury Waiver. The TBI Waiver is an extraordinary presence in the state and, as one recent person commented on this blog accurately pointed out: “Without the comprehensive services (of the waiver and its) dedicated staff …survivors (of brain injuries) will be forced to live in nursing homes and out of state facilities. These folks will never have the opportunity to live - albeit with supports - as independently as possible in the community, rebuild friendships and relationships, and enjoy life as any other person would.”

The problem is not the waiver. The problem is the insular and dysfunctional staff at the New York State Department of Health who are dangerously mismanaging the waiver, along with a disturbing public silence in support of the waiver from groups like the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) and Brain Injury Association (BIANYS). I would urge both groups to publicly support the waiver and do so soon.

The TBI Medicaid Waiver came to New York in 1995 so brain-injured New Yorkers living in nursing homes oftentimes in Massachusetts yet paid for by New York dollars, could come back to New York and live in the community. The waiver also helped and continues to help brain-injured New Yorkers at risk for nursing home placement remain in the community. It is worth noting too that it is less expensive for someone to be on the waiver than in a nursing home.

Time is very much of the essence. The current behavior of the DOH (along with a well-fed rumor mill that says the state is looking to dump the waiver) is putting the lives of those on the waiver at risk; at real risk. Let’s not forget that a federal court had to step in and protect the life of waiver participant Francine Taishoff from the DOH. Let us not forget that the DOH was seeking to dump Ms. Taishoff from the waiver, charge her $24,000 in back housing subsidies, knowing full well that their actions would’ve probably rendered Ms. Taishoff, who is a senior with a brain injury, homeless, which may well have ended her life. Slashing housing subsidies with little if any explanation, holding off on signing service plans (waiver lingo for treatment plans) for inexcusably long periods of time, blocking waiver staff from supporting their clients at Medicaid Fair Hearings when their services or homes are being threatened, all adds up to a hostile, dangerous, and life-threatening environment.

It was worrisome when, after publicly warning the TBISCC during their September 12 meeting that lives were at risk, council chair Michael Kaplen immediately responded by adjourning the meeting, never mind the threat to people’s lives and never mind that Mr. Kaplen’s term on the council, we later learned, ended in 2004.

None of us want to wake up one morning and learn that someone has died because of the behavior of the DOH; but it is the DOH, not the waiver that is the problem. If the waiver is not protected and better “drivers” placed at the helm, tragedy awaits. It’s inevitable.

This country was founded on the belief that individual freedom is an unalienable right. Freedom includes independence, and all people, with or without disabilities, deserve the maximum independence possible. To dismantle or abbreviate the waiver, rather than supporting it, building it, and giving it better “drivers,” would be the denial of freedom and independence which is, when all is said an done, about as un-American as it gets.

More on compassion, love & advocacy

2011-10-18T09:15:00.001-05:00

Three very thoughtful comments in response to the last blog post, Anger, compassion, love, advocacy & BIANYS, along with some equally thoughtful emails and phone conversations have helped me recognize it would be wise for me to write more about what one reader accurately summed up: “Your recent blog piece sounds like you are reviewing your advocacy tactics.” It’s true. I am and always try to with varying degrees of success.

All of us are wise to keep track of the patterns we find ourselves in. Sometimes it takes those close to us to point them out, and if we are centered enough, we can try on these observations and change accordingly without falling into the trap of clinging to old habits. John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” How true.

I want to comment a bit on some of what I’ve read and heard in response to the last blog piece. But first we must stipulate to the fact that the very act of holding people and organizations accountable may upset people. I can’t do anything about this. What I can do is advocate with intensity and tenacity and honesty and do my level best not to make anything sound personal. But, if leaders of various groups, government agencies, and others blatantly ignore those they claim to serve, I am going to say so. If organizations do not do what they tell people they do, I am going to say so. I have no other choice. One thing is very clear, things can’t go along business as usual when it comes to the realities currently being faced not just by brain-injured New Yorkers but by all people with disabilities in this state and beyond.

What I must pay close attention to is my contribution to the push for change. People in leadership positions must recognize and, in their choices, live the following reality: the Kahrmann Advocacy Coalition is not about Peter Kahrmann any more than the Brain Injury Association of NY State is about Judy Avner or Marie Cavallo, or the Traumatic Brain Injury Services Coordinating Council is about Michael Kaplen and Judy Avner. These groups are about and only about the people they are there to serve. And if any of us – including me! – gets too it’s-all-about-me, people around us need to call our attention to this and we need to listen and change accordingly.

Some things are not personal. It is not a personal attack for me to point out that Michael Kaplen and Judy Avner are sitting on a council even though their terms expired seven and eight years ago respectively. There is something not right about this and it needs to be addressed and I would point out this truth gives them the opportunity to do what anyone – including me – in leadership positions must do – and that is recognize when we’ve fumbled or gone wrong and do the right thing. There is nothing personal about my pointing out that the council, certainly under Kaplen’s chairmanship, has failed to do pretty much of anything it was designed to do, and this is something he needs to reflect on, step down, and let others take the lead. Upon hearing that George Washington stepped down after his second presidential term, King George of England said, “If Washington gave up power he is the greatest man on earth.”

Now, to the comments.

One person wrote in a beautiful statement about Marie Cavallo and I could not agree more. Marie has very much given and continues to give her heart and soul to the cause of brain-injured New Yorkers. It is true too that she is in a position where speaking what she really thinks is politically risky, and here is where, like me, she may want to do some reflection; is the “forced” silence worth the position? Only she can decide that. I love her no matter what she does, and I can say the same about Judy.

Another person wrote, in part, about the importance of establishing partnerships; they too are right. It is important (I am quite sure my correspondent knows this) that groups who form partnerships understand they are partnerships, meaning one group can’t simply say to another; you must accept everything about us as is, especially when some of the as is hinders or impedes equal rights for brain-injured New Yorkers.

Another person wrote in pointing out that BIANYS is no longer the answering component for the complaint line, now the regional representatives for DOH will do that. Two things: this change does not change the fact complainants never get the results of their complaints and perhaps now BIANYS will be able to openly advocate that they do.

We are all works in progress – including me.

Anger, compassion, love, advocacy & BIANYS

2011-10-16T16:41:00.001-05:00

I am always surprised when I hear there are or may be people who are scared of me or perceive me as being a walking bundle of anger when it comes to my advocacy. Our view of ourselves never matches the way others see us and so we are fortunate to have friends and loved ones who are honest with us.

There are some who mistakenly believe I have some personal anger and dislike for people like Judith Avner and Marie Cavallo, executive director and president of the Brain Injury Association of New York State. The fact of the matter is I love them both very much and if word reached me tomorrow that life had wounded either of them in any way I would be there for them in a heartbeat. The fact we have some significant differences on other fronts in no way diminishes my love for each of them.

There is a fine line between holding people and organizations accountable as opposed to lashing into them with what comes across as personal anger; and I am not about to pretend or claim that I’ve walked that line perfectly. I do know that my responsibility, a chosen responsibility, is to be honest with the world around me, which means being honest about what I know to be my flaws. I am not perfect nor will I ever be. I am deeply honest and deeply compassionate and I am deeply committed, right to the marrow of my very soul, to equal rights for all people – all people.

When it comes to equal rights, whether they be for people with brain injuries, blacks, Latinos, Jews, gays and lesbians, Asians, Muslims and so forth, it is not about me, and I can’t make my choices or write pieces here in this blog based on what I find emotionally comfortable or pleasing. On a deeply personal level I hate holding people I love like Judy and Marie publically accountable for things; my heart hurts over my current estrangement from BIANYS. I have had a relationship with them for many years.

BIANYS does certain things magnificently. They are the best educational and information resource on brain injury in the state (It blows my mind that the New York State Department of Health doesn’t take advantage of BIANYS trainings for its staff who are involved with brain injury). BIANYS has a grant from OPWDD (Office for People with Developmental Disabilities) that allows them to employ a group of people who are able to advocate for brain-injured New Yorkers if they received their injuries before the age of 18. The BIANYS staff who do this work are superb. However, BIANYS does not have the staff and, in my view, because they do not want to risk losing a grant from the New York State Department of Health, will not publically hold the DOH accountable for some of its ongoing horrendous behavior when it comes to the TBI Waiver, and, as a result, does not publically advocate for people on the TBI Waiver, people who sustained their injuries over the age of 18 and under the age of 64. Therein lies our differences; you can’t claim the mantel of leading advocacy agency for brain-injured New Yorkers in the State and remain silent when it comes to DOH behavior.

Now, about my anger, and yes, it is there, not as much as you might think but there are times, yes, I am angry. It is true that behind most anger is heartbreak, sadness. And it breaks my heart, deeply saddens me when I see brain-injured New Yorkers being treated by the DOH and others as if they are less than human, and, in some ways, as if they are disposable. And so I can’t remain silent, nor will I. All I ask is that people and organizations actually do what they say they do. No more, no less.

But let me say again; Judy and Marie are not my enemies, I do not dislike either of them. As I said, I love them both, very much. I hope as the days move forward some of the gap can be closed. We’ll see, it takes movement on both sides, one day at a time.

Kaplen & Avner hijacked NY State’s Brain Injury Council

2011-10-13T09:11:00.001-05:00

In what can only be described as a self-serving power grab and utter disrespect for their colleagues and brain-injured New Yorkers, Michael Kaplen and Judith Avner continue to control the New York State’s Traumatic Brain Injury Services Coordinating Council (TBISCC) even though their terms on the council expired in 2004 and 2003 respectively.

A document released to a member of the Kahrmann Advocacy Coalition by the New York State Department of Health reveals that Kaplen’s term expired on February 12, 2004 and Avner’s term expired on August 9, 2003. The fact they continue to show up at meetings and claim the mantel of council chair and vice-chair is, at minimum, an astonishing display of arrogance and, in an even harsher light, a rather self-serving desire on both their parts to be the center of attention and control the state’s dialogue on brain injury. Avner is the current executive director of the Brain Injury Association of NY State, Kaplen is its past president. Both are lawyers. Advertisements for Kaplen’s law firm display a focus on representing brain-injured New Yorkers.

The TBISCC was formed in 1994 by an act of the state legislature and it can be and should be an important presence beneficial to brain injured-New Yorkers, providers of services to brain-injured New Yorkers and, not at all incidentally, the Department of Health. By design and purpose the council is there to provide the Department of Health with proposals for services for Brain-Injured New Yorkers. A review of council minutes under Kaplen and Avner reveals that the council has offered virtually nothing under their watch in the way of proposals.

As a brain-injured New Yorker and as one whose name is linked to the largest grassroots advocacy group for brain-injured New Yorkers in the state, I can tell you that the TBISCC must be allowed to flourish and act on its mission, two things that will not happen if it continues to be hijacked by two individuals who are not even members of the council anymore.

Love with all your might

2011-10-11T09:03:00.001-05:00

Listen to this life it’s all yours too

Love this life with all its shifting shape movements

Dream the dreams you dare and breathe them in full

Love with all your might it is your right

Listen to the occupy movers singing your freedom

Listen to the heartbeat of nature’s song it’s your song

Dream the impossible possible and breathe it in full

Love with all your might it is your right

Listen to Spring, Summer, Winter, Fall

Listen to each season’s rhythm it is your all

Dream the chimes of freedom and breathe them full

Love with all your might it is your right

Memo to BIANYS, TBISCC & DOH: Don’t get comfortable

2011-10-11T07:18:00.001-05:00

I smiled this morning when I heard Occupy Wall Street protestors plan on marching in front of the homes of Wall Street bigwigs; it is, among other things, one of the very tactics the Kahrmann Advocacy Coalition (KAC) is currently considering. Marching in front of the homes of those in this state whose claims to support the rights of Brain-Injured NYers are, more often than not, nothing more than lip services. Yet some of them make a good living off the backs of those of us who live with brain injuries.

Do not for one moment think KAC’s actions are entirely up to me; they are not. There is a membership and a leadership team and together the next steps will be defined and enacted. What is clear is this: direct action is needed. We have given the state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and Department of Health every opportunity to do the right thing. It seems evident that the TBISCC’s biggest obstacle may well be its leadership: Michael Kaplen and Judith Avner, which is why the idea of protesting in front of their homes is being considered. Both BIANYS and TBISCC will not so much as utter a syllable if the utterance places them at odds with the DOH. God forbid.

This brings me to another tactic under consideration. Urging the state legislature and the governor to slash funding for BIANYS, meeting with the DOH and OPWDD (Office for People with Developmental Disabilities), both state agencies provide large grants to BIANYS, and pressuring them to cut the grants unless BIANYS lives up to its stated purpose.

The Kaplen Avner crowd remind me of those who, left to their own devices for long periods of time, grow comfortable and begin to experience themselves as immoveable objects. Well, Kaplen and Avner should not get too comfortable. I would suggest that others like the DOH’s Maribeth Gnozzio, Mark Kissinger, Mary Ann Anglin and Commissioner Shah as well as BIANYS President Marie Cavallo not to get too comfortable either; we may be protesting in front of your homes too.

Join Occupy Wall Street now!

2011-10-08T10:14:00.001-05:00

Abraham Lincoln said the government of the people, by the people, for the people, shall not perish from the earth, he did not say government of the businesses, by the businesses, for the businesses shall not perish from the earth.

Right now our government is run by and for big business and our democracy is on its way to perishing from this earth. And while the Republican’s allegiance to big business is more in the open the the Democrat’s allegiance, you can be sure the allegiance of the Democrat’s to big business is well-entrenched. One need look no further for big businesses grip on our government than the January 2010 ruling by the U.S. Supreme Court that declared corporations are people and money is free speech. The vote was 5-4.

The rapidly spreading Occupy Wall Street is lighting and re-lighting flames of hope across this country. May these flames continue to be lit and may the streets continue to fill with people and may this movement like so many movements across the globe grow to the point it cannot be denied because what is at stake is our freedom, our democracy. What is at stake is exactly what our founding fathers risked all for. What is at stake is what the Revolutionary War, our Revolutionary War was fought for.

The Occupy Wall street movement is all about preserving a government of the people, by the people, for the people, so it will not not perish from the earth.

Join the Occupy Wall Street movement, they are springing up all over the country. We must join. Our country’s democracy is at stake.

Let Freedom Ring & Occupy Main Street!

2011-10-07T06:41:00.001-05:00

The following statement was released by Occupy Wall Street on October 1. It would make the founding fathers proud.

Declaration of the Occupation of New York City

As we gather together in solidarity to express a feeling of mass injustice, we must not lose sight of what brought us together. We write so that all people who feel wronged by the corporate forces of the world can know that we are your allies.

As one people, united, we acknowledge the reality: that the future of the human race requires the cooperation of its members; that our system must protect our rights, and upon corruption of that system, it is up to the individuals to protect their own rights, and those of their neighbors; that a democratic government derives its just power from the people, but corporations do not seek consent to extract wealth from the people and the Earth; and that no true democracy is attainable when the process is determined by economic power. We come to you at a time when corporations, which place profit over people, self-interest over justice, and oppression over equality, run our governments. We have peaceably assembled here, as is our right, to let these facts be known.

They have taken our houses through an illegal foreclosure process, despite not having the original mortgage.

They have taken bailouts from taxpayers with impunity, and continue to give Executives exorbitant bonuses.

They have perpetuated inequality and discrimination in the workplace based on age, the color of one’s skin, sex, gender identity and sexual orientation.

They have poisoned the food supply through negligence, and undermined the farming system through monopolization.

They have profited off of the torture, confinement, and cruel treatment of countless nonhuman animals, and actively hide these practices.

They have continuously sought to strip employees of the right to negotiate for better pay and safer working conditions.

They have held students hostage with tens of thousands of dollars of debt on education, which is itself a human right.

They have consistently outsourced labor and used that outsourcing as leverage to cut workers’ healthcare and pay.

They have influenced the courts to achieve the same rights as people, with none of the culpability or responsibility.

They have spent millions of dollars on legal teams that look for ways to get them out of contracts in regards to health insurance.

They have sold our privacy as a commodity.

They have used the military and police force to prevent freedom of the press.

They have deliberately declined to recall faulty products endangering lives in pursuit of profit.

They determine economic policy, despite the catastrophic failures their policies have produced and continue to produce.

They have donated large sums of money to politicians supposed to be regulating them.

They continue to block alternate forms of energy to keep us dependent on oil.

They continue to block generic forms of medicine that could save people’s lives in order to protect investments that have already turned a substantive profit.

They have purposely covered up oil spills, accidents, faulty bookkeeping, and inactive ingredients in pursuit of profit.

They purposefully keep people misinformed and fearful through their control of the media.

They have accepted private contracts to murder prisoners even when presented with serious doubts about their guilt.

They have perpetuated colonialism at home and abroad.

They have participated in the torture and murder of innocent civilians overseas.

They continue to create weapons of mass destruction in order to receive government contracts.*

To the people of the world,

We, the New York City General Assembly occupying Wall Street in Liberty Square, urge you to assert your power.

Exercise your right to peaceably assemble; occupy public space; create a process to address the problems we face, and generate solutions accessible to everyone.

To all communities that take action and form groups in the spirit of direct democracy, we offer support, documentation, and all of the resources at our disposal.

Join us and make your voices heard!

In Praise of Bill Combes

2011-09-29T09:14:00.001-05:00

When you live with a disability, in my case a brain injury, you encounter those whose commitment to your rights is rooted in self-serving lip service and then you encounter those whose integrity, compassion and commitment to people with disabilities is so real and genuine they glow. In the case of Bill Combes, I suspect this good and decent man can read by his own light.

Bill Combes worked out of the New York State Commission on Quality of Care (CQC) for something in the neighborhood of 30 years and as of Wednesday this week, has entered into well-deserved retirement. If ever there was one deserving of accolades from the White House to the State house to the house on Main Street, it is Bill Combes. The CQC is the Protection and Advocacy agency contracted with the federal government for brain-injured New Yorkers like me. The only flaw in the CQC is, like all such agencies, they never have the number of staff they want, and, frankly, deserve.

Disability rights advocates like me always knew they would get a serious attentive audience when talking with Bill. We also knew that Bill and the CQC would do all it could to fight for the rights of brain-injured New Yorkers. Unlike the state’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council and, for that matter, the Department of Health, Bill Combes and the CQC always offered more than just lip service.

Those of us with disabilities have lost a wonderful ally now that Bill has retired. But, wherever he is, I hope he knows that all the lives he touched are better off because of him. Unlike too many others, he never experienced or treated anyone with any disability as being less than. The completeness of each person’s humanity and worth was never – and I mean never – lost on him.

I am blessed to know him and have had the privilege of working with him. Now it is his family’s turn to have the all of him, and this includes his first grandchild, a granddaughter; she’s in for quite a treat.

You are reason enough

2011-09-24T09:22:00.001-05:00

There is little joy in loss and lots of pain; the absence of joy and the presence of pain can feel endless, and here is where we need to be careful.

The realities of life will please us and disappoint us simply because they are the realities of life. Companies promising a lifetime of employment have the capacity to without warning reverse field and cut you loose; people who pledge their undying love and allegiance to you have the capacity to do the same. Does this mean we give no company or person a chance? I don’t think so. If there is the chance of a hoped for lifetime connection it will never happen if any of us close the door on the possibility.

But protect yourself.

One way of protecting yourself revolves around discovering, if you’ve not done so already, that who you are, your life is reason enough to get up and live and enjoy your day. When loss strikes and guts you out of the blue and leaves your skin chilled and your heart shivering, you are still there and still alive and while life in the moment you’re in may be a terrifying place to be, keep breathing and don’t give up.

Obviously I am speaking from experience. The specifics of my experience, at least for this missive, aren’t important. What is important is this. Who you are is truly enough reason to not just live, but to give yourself permission to enjoy your life. The loss of any person, place or thing does not deserve so much control over you that it robs you of your right to enjoy your life. And hell, there is no reason to feel guilty by moving on. After all, the person, place or thing that left your life chose to do so; guilt didn’t stop them. Don’t let it stop you.

Misplaced guilt deserves no say over any life.

BIANYS ignores its members rights & more

2011-09-23T07:09:00.001-05:00

The Brain Injury Association of NY State will not support the rights of brain-injured New Yorkers to be informed of the results of the complaints they file through the joint BIANYS-NYS Department of Health TBI Waiver Complaint line. The DOH refuses to tell complainants the results of their complaints. BIANYS President Marie Cavallo and BIANYS Executive Director Judith Avner have chosen to ignore a September 14 email sent to them by this writer on behalf of the Kahrmann Advocacy Coalition, the largest advocacy group for brain injury survivors in the state, which read exactly as follows:

Please note that many are copied and blind-copied on this email, including quite a few BIANYS members who are told by you that BIANYS is the leading advocacy organization in the state.

We have one specific question and would like a direct answer to this specific question. Anything less and we will continue to conclude BIANYS does not believe TBI Waiver complainants should be given the full results of their complaints.

Does BIANYS believe TBI Waiver complainants should be given the full results of the complaints they file through the TBI Waiver complaint line current answered by BIANYS staff? Yes or NO

Keep in mind, a large number of people, including your members, are watching this email and awaiting your answer.

Peter Kahrmann, KAC Founder

Last I knew BIANYS had less than 400 members, however, a significant number of those members also belong to KAC, including me. So, it is a statement of fact to say BIANYS refusal to even answer the email is, once again, another example of BIANYS (which falsely claims to be the leading advocacy organization in the state) ignoring the rights its own members and the rights of all brain-injured New Yorkers and their families.

So far, the BIANYS board of directors has done nothing to address this.

Brain-Injured NYers outrank Michael Kaplen’s hissy fits

2011-09-17T10:14:00.001-05:00

The New York State Traumatic Brain Injury Services Coordinating Council this month responded to the news that the lives and homes of brain-injured New Yorkers are in danger because of the state’s Department of Health by immediately adjourning their meeting.

No council member said a word when they were told a federal judge protected the life of a brain-injured senior by blocking the DOH’s attempt to end her services and collect $24,000 in back housing subsidy from her. No council member said a word when told that the DOH has been conducting a statewide campaign to either end or slash services and housing subsidies to brain-injured New Yorkers, even though doing so puts people’s lives and homes at risk. No council member said a word when told that brain-injured New Yorkers who file complaints related to the TBI Waiver are never given the results by the DOH. Not surprisingly, this writer received written notice from the DOH yesterday denying my Freedom of Information Law request to see the results of the complaints I’ve filed. No council member said a word when they heard that the DOH has yet to provide them (or anyone for that matter) with a written policy to memorialize the verbal directive blocking waiver providers from advocating for their clients at Medicaid Fair Hearings, an action that also puts brain-injured New Yorkers at risk.

Instead, the council, at the behest of its perpetually self-absorbed chair Michael Kaplen, adjourned the meeting.

Now, do I actually think that no council members care about the issues raised above? No, I don’t think that at all. In fact some do care and care very much. Then why their silence? I think to some extent the answer rests in the understandable reluctance to deal with Kaplen’s outbursts of temper, his hissy fits.

Kaplen reminds me of the kid in the schoolyard who always throws a hissy fit when he can’t have his way. I was in a Brain Injury Association of NY State (BIANYS) board meeting once when Kaplen, angered that some in the meeting did not agree with him that a board member should remain on the board even though he didn’t attend meetings, proceeded to raise his voice, wag his finger, and threaten to go around the table and embarrass everyone in the room. It will surprise no one to learn I verbally stepped into him telling him he was out of line threatening people simply because they didn’t agree with him. People were so upset by his behavior that the meeting took a break and one board member, a brain-injured survivor like myself, was so upset she was trembling.

Kaplen is known for his hissy fits.

This TBISCC meeting was no different. Council member Barry Dain, as good and decent a person as there is in the field of brain injury, found himself dealing with a Kaplen hissy fit when he shared an issue that had surfaced with some providers about perceived inequities in surveys conducted by the Office of the Medicaid Inspector General (OMIG). Kaplen appeared to be trying to shut Dain down by venting his anger and frustration with the state’s Provider’s Alliance – a group of 40 to 50 TBI Waiver Providers – when, as Dain patiently explained, he was not representing the Provider’s Alliance.

In the council meeting prior to this one, Kaplen got himself worked up into a hissy fit when two council members, Dain and Bill Combes, advocated for the right of a brain-injured New Yorker in attendance to speak before the end of the meeting. In a moment best described as an equal mix of comical and, quite frankly, pitiful, Kaplen accused his two colleagues of trying to stir the pot.

It is not surprising that the council’s assistant chair, Judith Avner, did not seek in either instance to rein Kaplen in, after all they’ve been at the head of the table for years, both on the council and BIANYS, and that is part of the problem. Avner is the executive director of BIANYS, Kaplen its past president.

If brain-injured New Yorkers are going to be given the priority they deserve by groups like the council, members of these groups must step up and stomp out those who seek to control them by throwing hissy fits. Council members cannot afford to cower or respond in silence to Kaplen’s hissy fits. Hissy fits are like any behavior, as long as they get the person’s desired outcome, they won’t stop.

When groups like the council are told the lives and homes of brain-injured New Yorkers are at risk, they can’t respond by adjourning the meeting because they are afraid of someone’s hissy fits. Whatever challenge one has to face internally in order deal with a hissy fit pales in comparison to the challenges being faced right now by too many brain-injured New Yorkers because of the DOH.

NYS Brain Injury Association & Council stand against rights of brain-injured New Yorkers

2011-09-13T09:02:00.001-05:00

New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council are not interested in defending the rights of brain-injured New Yorkers.

Brain-injured New Yorkers who file complaints related to the TBI Waiver are never informed of the results by the state’s Department of Health. Both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position.
Waiver providers are not allowed by the DOH to advocate for brain-injured New Yorkers at Medicaid Fair Hearings; both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position.
The assault on housing subsidies being inflicted by the DOH on brain-injured New Yorkers, a campaign that puts some at risk for homelessness and threatens the lives of others. In one instance a federal court judge had to step in protect the life of one brain-injured senior from the DOH Campaign. Both BIANYS and the TBISCC are well aware of the DOH housing-cuts campaign; their silence on the matter reflects this position.

Both groups have been asked repeatedly to address all these issues and while the TBISCC gives intermittent lip-service to the Medicaid Fair Hearings question, BIANYS – which proclaims itself the leading advocacy organization in the state for brain-injured New Yorkers - remains stone silent. At the beginning of yesterday’s council meeting Judith Avner, assistant chair of the council and executive director of BIANYS, said the council needed to hear what the actual DOH policy was regarding fair hearings. The DOH has for months been saying they’re working on a policy. One might think Ms. Avner’s statement was reason for hope but when DOH official MaryAnn Anglin arrived at the meeting later no council member, including Ms. Avner, asked her about the fair hearing policy.

It seems one has a better chance of nailing Jell-O to the wall than getting the council to offer the DOH proposals that have anything whatsoever to do with the TBI Waiver. It had been proposed by this writer on behalf of the Kahrmann Advocacy Coalition the the council formally recommend that all DOH staff, contract and otherwise, be required to take training in brain injury now offered by BIANYS. DOH staff and contract staff involved with brain injury receive no mandatory training in the brain or in brain injury. While BIANYS is not the advocacy organization it claims to be, it is, without question, the best educational resource for understanding brain injury in the state. The council can’t even make this recommendation!

The DOH’s intentions are clearly sinister. One can only conclude that the reason for blocking waiver providers from supporting their brain-injured clients at Fair Hearings is to undercut the client’s ability to prevail, thus making it easier for the DOH to kick them off the waiver. One can only conclude the reason complainants are not given the results of their complaints is a reflection of the DOH covering its, well, ass. One can only conclude the reason the DOH is kicking as many people off the waiver and out of their homes as possible is to save money, even though this literally risks human life.

The silence of BIANYS and the TBISCC tells us both groups agree with the DOH, at least the leadership of both groups does.

When this writer spoke during the public comment period at yesterday’s meeting and told the council that there are brain-injured New Yorkers whose lives are at risk because of the actions of the DOH and the silence of BIANYS and the council, council chair Michael Kaplen responded by immediately adjourning the meeting.

BIANYS and TBISCC leadership needs to either step up or step out, and soon.

What will not be

2011-09-05T17:33:00.001-05:00

I have reached the time in life when I am beginning to understand and accept some things will likely never be. I have come to believe, quite firmly in fact, that by accepting what will not be we are freed to accept what is and what will be.

Certainly accepting some of the things that will not be means experiencing sadness and, in some cases, loss, neither a particularly pleasant experience; but life is not ended by these experiences, nor is its value diminished. I accept, for example, and have accepted for some time now that I will never again have a relationship with family. Although I did not realize it nor see it coming at the time, my relationship with my family ended the day my father died. I was 15.

However, I have a friendship closing in on 40 years with Michael Sulsona; we are actually brothers at this point. His sons, Vincent and Philip, grew up calling me Uncle Peter and in my heart and soul they are my nephews. And while I would have weathered the storms of life, Michael’s presence and the presence of his boys have made managing the storms a lot easier. I love them with all my heart. I am blessed.

I have come to believe too that at this point it is unlikely I will ever have the relationship with a woman that I’d like to have; one deep-heart committed under the same roof sharing the daily strides of life. There are few gifts in life more wonderful than waking up next to the person you love. But love and relationships have many forms, they are not cookie-cutter made, even though we are raised by well-intentioned misguided folks to think so. Once we gently disengage from that myth we are free to love in ways we never thought possible.

And then there is my writing, the part of myself I am closest too. Getting a book published is not all about quality writing. What gets published proves that. Hell, while The Da Vinci Code had a good story line, it was some of the worst writing I’ve ever encountered; the only cliché the book left out was It’s quiet, too quiet.

When it comes to my writing, my job is to write one piece of work at a time, send them out when they are complete, and then get to work on the next peace.

Life is good, not always easy, but good. Remember (please) that accepting what will likely not be will free you to experience what will be. And hey, when you notice you’re there when you wake up in the morning you know things could be a helluva lot worse.

Memo to BIANYS board and TBISCC members

2011-09-05T05:39:00.001-05:00

The leadership of my state’s Brain Injury Association (BIANYS), Traumatic Brain Injury Services Coordinating Council (TBISCC) and the Department of Health are all fully aware of the damage being inflicted on the lives of brain injury survivors throughout the state by the aforementioned DOH and, because of their silence (complicity), the brain injury association and the council.

The BIANYS board of directors and the members of the TBISCC need to dump their “heads of state” and get the bows of both ships pointed in the right direction – a direction that really does advocate for brain-injured New Yorkers and, in the case of BIANYS and others, not simply use those of us with brain injuries to fill their coffers and inflate their egos.

This September 12 the TBISCC will meet and have some presentation from Mt. Sinai Medical Center (which is all well and good but history shows that all the presentations given to the council over the years have not translated into a single proposal by the council to the DOH; feel free to email me and I will send you all the council minutes if you find this hard to believe) and then they will discuss a concussion bill which is important but they will not say a thing about the brain-injured New Yorkers having their TBI Waiver services cut or being discharged off the waiver altogether, nor will they say a word about waiver participants who are having their housing subsidies cut or ended putting some at risk of homelessness and death. A federal judge protected one life when he stopped the DOH from throwing a brain-injured senior out of her home and asking her for $24,000 in the process.

BIANYS and the TBISCC have been dead silent on all this, yet on September 12th there council chair Michael Kaplen will sit in all his pompousness and there Judith Avner the BIANYS executive director will sit in all her feigned righteousness and both will claim straight-faced to care about those of us who live with brain injuries. If either cared they would not be silent about the matters mentioned in this particular missive, but they are. The DOH’s Maribeth Gnozzio may or may not be there, but if the DOH actually cared about brain-injured New Yorkers Gnozzio would not even be in the picture. All three of these folks seem to be tiny-minded narcissistic control freaks and in the long run, are no more important than bird droppings on a windshield (my apology to the bird population).

The challenge contained in this blog piece is to BIANYS board members and council members. Do your leaders truly represent where you yourself stand when it comes to brain injury survivors? Are you really comfortable with the fact neither group holds the DOH accountable nor does either group live up to its mandate? Are you truly comfortable with the silence both groups exhibit in the face of the DOH’s brutality to those you claim to care about?

For example, I would urge BIANYS board members to carefully review the ebits the organization sends via email to its members. Look at the advocacy section in each and you will not find one example of BIANYS advocating for anything other than giving its support to the concussion bill. I would urge council members to ask for and review council minutes over the years and see if you can find a single example of a proposal by the council to the DOH. Email me at peterkahrmann@gmail.com and I will send them to you. I will also keep your identity private unless directed otherwise. I’ve already talked with some in both groups.

I would urge members of both groups not to fear Avner’s anger nor Kaplen’s for that matter. Kaplen’s bellicose behavior would be rather funny were it not so disrespectful to colleagues and those he claims to care about. Hell, there was a time Kaplen represented me in a lawsuit against the state’s Crime Victims Board which, at the time, was trying to stop reimbursement for any and all phone therapy sessions for crime victims. Kaplen will claim he was the only attorney willing to help which was not true, he offered to help and in the process and tried to get the state to pay him $500 an hour for his efforts (he was helped free of charge in those efforts by others, by the way), money that had the judge not rejected his request, would likely have been taxpayer dollars. I asked Kaplen to speak with me first when the ruling came in so we could discuss how to release it to the media.

Can you guess how I found out the judge ruled in our favor? From a reporter, a reporter Kaplen had called and bragged to. It was then I called and left Kaplen a voicemail message explaining that he should feel a sense of joy that he had not taken this liberty, say, 25 years earlier, because in those days I would’ve simply taken him outside and kicked his ass.

While there will always be Kaplens and Avners and Gnozzios among us, there will always be Kings, Mandelas, Gandhis, Wiesels, Wiesenthals, Darrows, Greers, Steinems, Father Mychal Judges, and more. The question, therefore, is this: are there any of the mindset reflected in this latter group that are on the BIANYS board and the council? If there are, then the days of Kaplen and Avner should be short in number.

Living the day I’m in

2011-09-04T04:41:00.001-05:00

Music jazz shape-shifts my morning and the daylight gently takes over the sky, and this day I know is well worth living. Yours too.

There are problems galore in life, some changing shape daily, some seem to cling, some flit and leave, but none take the life found in today, the day I’m always in. You too.

For me it’s Bruce, Beethoven, Jazz, Beatles, Dylan, and then some. For me it’s Dickens, Steinbeck, J.G. Farrell, Dos Passos, Garcia Marquez, and then some. For me it’s dawn breaking, thunderstorms, birds (all of them), a fawn drinking from mom across the way, wild turkeys pride-waddling ‘cross the yard, the soul-sound of a Red Tail Hawk, and then some. For me the all of life in my day makes my heart sing. Yours too.

And then of course the loss lived with, people gone physically forever (far too many, too many), days and times gone by, but all alive in my daily strides and lifted chin, and the gift of tomorrow which will always be me in the day I’m in. You too.

And so each day is always today a gift I know and am grateful for; it easily might not be here. And so, smiling at my presence in the moment I’m in, remembering to live. You remember too.

End the Kaplen-Avner Show

2011-09-02T08:35:00.001-05:00

It will surprise no one to learn that New York State’s Traumatic Brain Injury Services Coordinating Council and Brain Injury Association (I am almost repeating myself) are ignoring requests to look into the bogus complaint line for the TBI Waiver and investigate a state Department of Health’s directive blocking waiver providers from advocating for their clients at Medicaid Fair Hearings. It is sadly not surprising that the requests had to be made in the first place.

As readers of this blog will recall, the DOH never tells complainants the outcomes of their complaints. BIANYS, under the leadership of Judith Avner and, historically, of Michael Kaplen, entered into a contract with the DOH to answer complaint line calls knowing full well complainants are never given the results.

As long as council and BIANYS leadership are not held accountable by their members and, in the case of BIANYS, the board of directors, nothing will change, and the lives of brain-injured individuals in the state will continue to suffer for it.

Why are the requests being ignored? Because, if one agrees that actions speak louder than words, the leadership of the council and the brain injury association (again I am almost repeating myself) don’t really care. In fact, a July 5 publication in this blog reveals that the TBISCC has failed miserably to live up to its purpose which is, in short, to provide proposals to the DOH to best serve brain injury survivors in the state. The only thing that falls into the category of a proposal is a proposed trust for brain injury survivors in the state that would also benefit the brain injury association. Avner displayed some of her true colors by voting for the trust fund anyway even though doing so clearly violated the public officer’s law which council bylaws require members to follow.

Council chair Michael Kaplen’s penchant for self-aggrandizement and adding cases to his legal coffers is well known. I remember a yearly best-practice brain injury conference hosted by the state’s Department of Health (they were around 2003 or 2004 when some of us noticed that Kaplen had deposited business cards from his law firm on every table in the conference; at the time he was president of the state’s brain injury association and then and now Judith Avner was the association’s executive director. A few of us went around the room and removed them.

Avner, on the other hand, is dazzlingly skilled at lip service. I’ve walked away from meetings with her thinking brain injury survivors are lucky she is around only to realize (at greater speed as the years have passed) that she didn’t commit to a thing, didn’t agree to a thing, and, above all, made sure BIANYS did nothing that even remotely held the DOH accountable.

One would like to think Avner and Kaplen would, in their heart of hearts, feel guilty for repeatedly letting brain-injured individuals down; but feelings like this require a conscience, something both seem to be running short on.

As a friend of mine said recently, there needs to be a grassroots uprising in order to address the Kaplen-Avner show and, let us not forget the non-responsive Maribeth Gnozzio of DOH Fame. Perhaps it might be interesting to conduct non-violent protests at the homes of all three. It’s been too long since protests like this have surfaced in Chappaqua, Delmar and Tannersville.

Here is the agenda for the TBISCC Council meeting September 12.

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

Empire State Plaza, NYS Museum Meeting Room A

(Concourse level of NYS Museum)

Monday, September 12, 2011

10:30 AM – 4:00 PM

AGENDA

10:30am – 10:45am Welcome

Review and Approval of Minutes from June 20, 2011 Meeting

10:45am – 11:45am Kristen Dams-O'Connor, Ph.D., Screening for Concussion in Collegiate Athletes, Brain Injury Research Center, Mt. Sinai Medical Center

11:45am – 12:45pm Brian Greenwald, M.D., Medical Director, Brain Injury Rehabilitation Program, Mt. Sinai Medical Center

12:45pm – 1:15pm LUNCH (members on their own)

1:15pm – 2:15pm Todd Nelson, Concussion Management Information/Guidelines, New York State Public High School Athletic Association

2:15pm – 3:15pm Discussion of Concussion Management and Awareness Act (S. 3953-B)

3:15pm – 3:45pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:45pm – 4:00pm Public Comment/Summary/Next Steps/Adjournment

This August Month

2011-08-21T16:54:00.001-05:00

If history has its say I will die in August. August has three rather formidable anniversaries for me, the specific days of the month are not important for this essay: my mother Virginia committed suicide in 1992, I was shot in 1984, and, my father died in 1969.

It may surprise you to learn that all in all August is not a depressing month for me. While the three experiences just mentioned all brought me to my knees, literally and figuratively to be sure, the fact I survived them and am alive and well and sober serves as a reminder to me that we human beings are far more resilient than we think. Yes, this includes you too. Whether you are able to believe this or emotionally experience this as true about yourself will have something to do with the moment you’re in right now. But I’m right, you are a human being with greater reserves of strength and resilience than you may, at the moment or at this time in your life, believe. because one believes they are absent strength does not mean they are, it means that is what they believe.

Now, while August is not a depressing month for me (I actually feel quite victorious on the day of the shooting, it’s twenty-seven years this month), it is an on guard month for me. A month when I am on a heightened state of alert. And this is all okay.

Having said all this, however, I am deeply saddened that I may have to say goodbye to one of my dogs this month and, if not this month, soon. Milo and I have been together since on or about 1999 and we are quite close. He is a brindle beagle-mix and has been my writing companion for years. Whichever room I’m in, that is where he wants to be. I’ve written many words with him curled by my feet. He has never criticized my writing nor, come to think of it, me. Well, maybe he does get a bit huffy with me when I‘m a bit slow of the mark feeding him. We weren’t together long before I realized his primary goal in life was to eat all the food on planet earth.

I will hold him when he leaves this world. I will not let him be without my arms around him and words of love pouring into his ear. He will not be alone. No one should have to be alone in the end. And while I cannot protect myself and most from that fate, I can protect him. God knows he’d protect me.

While August and I may not be in love, we do have a close relationship. I respect him and I hope, after all these years, he respects me.

Is the Kaplen-Avner Show the problem?

2011-08-17T06:46:00.001-05:00

It is revealing but not surprising that the New York’s Brain Injury Association - not the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) or Department of Health - is announcing what the next TBISCC meeting will be about. It is no secret that the leadership of all three groups are, figuratively speaking, in bed together. It is also no coincidence that Michael Kaplen and Judith Avner lead the council and both, until recently, led BIANYS. Avner is still the BIANYS executive director.

According to the BIANYS website, “The September meeting will be dedicated to a discussion of the Concussion Management and Awareness Act (S. 3953-B) which passed the legislature at the end of the session. Discussion will focus on recommendations on the implementation of that legislation to the Commissioner of the Department of Health.” The passage of the act is, without question, a positive step forward. For the council to provide recommendations is all well and good and certainly appropriate. How is it, though, that BIANYS knows, before it is a announced

It is also no secret that little if any evidence exists of BIANYS or TBISCC leadership ever taking the DOH to task for some of its rather brutal treatment of brain injury survivors and, not incidentally, its rather brutal treatment those who provide services to brain injury survivors. New York’s Brain Injury Providers Alliance, for example, has, for some time now, been rightfully pleading with the DOH for a statewide uniform billing policy and they are still waiting.

What is not appropriate and what is an act of disloyalty pure and simple to New York’s brain-injured individuals is the fact TBISCC and BIANYS leadership will do anything but hold DOH accountable.

Some examples:

The council was asked to look into the blatant injustice of the state’s TBI Waiver complaint line managed jointly by the DOH and BIANYS. Complainants are never told the outcomes of their complaints, a lack of due process by any measure.
With only one or two exceptions, the council has tip-toed around the fact the DOH has told TBI Waiver providers they cannot side with complainants at Medicaid Fair Hearings. BIANYS has completely avoided addressing this issue.
The TBISCC and BIANYS remain dead silent even though a recent article in the Albany Times Union and this blog have reported DOH’s effort to use any excuse under the sun to discontinue housing subsidies for brain-brain injured individuals even when doing so would leave them homeless and jeopardize their lives.

One question that needs to be asked is this. Is the Kaplen-Avner show the problem? A step in the right direction would be for Kaplen and Avner to step down, then we would find out.

For my father

2011-08-16T04:18:00.001-05:00

In all times

And in all lives

There are moments filled

With the sincerest intimacy

You and I

Shared such moments

And I thank you

And love you

For those times

***

Note: I wrote this the day after my father died on August 16, 1969. I wrote it alone in his room. I was 15. My father was and is the greatest gift my life has ever given me.

Keeping it simple

2011-08-13T07:13:00.001-05:00

Many of us, and I am no exception, get so caught up in the perpetual swirl of life’s struggles that we forget to relax, breathe, keep things simple. We forget to live.

Whatever the struggles we each face, either by choice or by unavoidable circumstance, none deserve so much sway over our lives that we lose sight of what is truly wonderful about life, and what wonder is there for us to experience, even with the struggles.

As an advocate, primarily in the arena of brain injury, there is so much dysfunction and bigotry to address I can, and at times have, found myself doing little else, save for reading: a habit that has sustained me through the darkest times, that’s for sure. I live in state with a department of health packed with people who, with some very real exceptions, couldn’t care less about those who live with a brain injury. I live in a state with a brain injury council, called the Traumatic Brain Injury Services Coordinating Council, that has pretty much failed to live up to its stated purpose from day one. I live in a state with a brain injury association that, on the one hand is a remarkable and desperately needed educational presence on brain injury, and, on the other hand, claims to be an advocacy agency when it is not.

In short, the issues with all of the above could consume anyone whose instinct is to promote equal rights.

It is clear to me that being consumed by any one thing, even when honorable, is not healthy, and, in the long run, makes one less effective when it comes to this one thing in the first place.

When you think about it, what is advocacy for equal rights actually about? It’s about the right of every individual to be who they really are in life, safely, equally. In life means the ability to live life. To fall in love and walk down the street holding hands with the person you love. It means being able to go out for coffee or a meal or read a book. It means being able to watch movies, birds, people, sunsets, sunrises, thunderstorms, snowfalls, oceans, rivers, streams. It means being able to listen to music, laughter, wind, thunder, conversation, and so on. It means experiencing life, which none of us can do as well as we have a right to do if we are consumed by any one thing.

Keeping it simple so much means staying in the moment you’re in. As a friend of mine recently gone from this life said to me: “Remember, Peter, the moment you’re in is the only place you have to be.”

Early Morning Moment

2011-08-04T07:46:00.001-05:00

It takes them not long to see I am merely reading, or listening, or day dreaming. Soon they are flitting about all around me, sometimes flying past me like thrown darts, the sound of their wings, rapid joyous heartbeats. Their songs (so many I wish I knew them all) dance in the air, a kaleidoscope of jewels. And I feel and experience and believe with all my heart and soul that we are indeed friends. We are all together in this early morning moment that is, for now, one of exquisite peace. I am happy in tears.

The BIANYS Journey of Nope Gala

2011-07-28T11:47:00.001-05:00

“The Brain Injury Association of New York State is the premier support and advocacy organization for New Yorkers with brain injury and their families,” according to the letter. One would be hard pressed to find a statement less true than that.

The letter is a BIANYS fund raising letter asking everyone to donate money to assist them in their “important work” at the fourth annual Journey of Hope Gala (renamed above for accuracy’s sake) at some pricey location in New York City. BIANYS should stop with the spin and be straight about what work they do, and, equally important, what work they don’t do. Perhaps when the authors of the letter, Gala co-chairs Rosemarie diSalvo and Bradley Van Nostrand learn BIANYS is not the advocacy organization it wants everyone to think it is they’ll pause and rethink their involvement.

Perhaps too, when actresses Lorraine Bracco and Penny Marshall, both of whom, according to one website “have stocked the (gala’s) silent auction with celebrity memorabilia from their friends and several of their friends” learn they are supporting an organization that isn’t what it says it is, they’ll re-think their involvement. After all, BIANYS support for New York’s brain-injured individuals and their families is anemic at best. Three Albany-based BIANYS support groups came to an end recently because of BIANYS refusal to reimburse support group leaders for their out-of-pocket expenses and, in the Albany case, a rejection of the pleadings for help from support group members, made up of, you guessed it, the very brain-injured individuals and family members BIANYS says it cares about.

While BIANYS claims it can’t afford to reimburse its volunteers for their expenses, lets review the cost of attending the gala, as an individual or in one of several sponsor levels which lands you extra tickets (hold onto your hat).

Gala Ticket $300
Patron Sponsor: $400 (1 ticket)
Friend Sponsor: $1,000 (2 tickets)
Leadership Sponsor: $2,500 (6 tickets)
Bronze Sponsor: $7,500 (8 tickets)
Silver Sponsor: $10,000 (10 tickets)
Gold Sponsor: $15,000 (20 tickets)
Platinum Sponsor: $25,000 (30 tickets)

I wonder how many brain-injured individuals on fixed incomes and their families will be going.

Enough said.

BIANYS & NY State DOH: Birds of a feather (my apology to the birds of the world)

2011-07-27T05:15:00.001-05:00

Trying to get New York’s Brain Injury Association and Department of Health to openly deal with some of the challenges faced by brain injury survivors in the state is like trying to nail Jell-O to the wall.

A case in point. Both BIANYS and DOH are tied by contract to the traumatic brain injury waiver complaint line. I can tell you from first hand experience and from hearing the experience of others from all over the state that if you file a complaint you will never learn the results, not ever.

I recently wrote to DOH Deputy Commissioner Mark Kissinger pointing out the injustice, not to mention the possible violation of due process set forth in the Constitution's 14th amendment. He wrote back saying he would have his staff look into it and get back to me soon. Never heard another word from him, despite follow-up emails on my part.

Then I wrote to the BIANYS board president, Marie Cavallo, and executive director, Judith Avner, asking BIANYS to take a public stance citing the injustice of complainants being ignored. The request was ignored. Scary that these two are the leaders of a non-profit organization that on its website makes the following claim: “Since 1982, we have provided information, resources, programs, advocacy, and support services to brain injury survivors, family members, health care professionals, and educators.” They are absolutely right when they talk about the provision of information and resources and, to some extent, programs, but it is highly disingenuous of them to claim they are an advocacy organization because they are not.

Keep in mind, I’ve asked Avner and Cavallo, in writing, on more than one occasion, to take a public stance regarding the complaint line. They ignored the request. I’ve asked them in writing to take a public stance regarding the DOH directive blocking TBI Waiver staff from advocating for their clients at Medicaid Fair Hearings. They ignored the request. I asked them in writing to take a stance regarding DOH’s mangling of the rent subsidy which has resulted in quite a few brain-injured individuals getting eviction notices. They ignored the request. I asked them in writing to issue some kind of public statement regarding the heartbreaking case of Francine Taishoff who had her life put in jeopardy by the DOH. They ignored the request. And I’m a BIANYS member!

I hope the BIANYS board steps in and either straightens out or replaces both of them.

And then we have the DOH.

I sent several emails to Maribeth Gnozzio asking her to address the directive she gave last year blocking waiver staff from advocating for their clients at Medicaid Fair Hearings. Gnozzio ignored the emails. So did the DOH officials copied on them: Kissinger, Mary Ann Anglin and, of course, the DOH’s “tough guy wannabe” Carla Williams.

The pattern in both groups, at least as far as their leadership is concerned, is to do ignore anyone and everyone who holds them accountable and, God forbid, calls on them to do what they say they do in the first place.

Is the problem NY’s brain injury leadership, the DOH, or both?

2011-07-26T08:25:00.001-05:00

The leadership of New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council seems determined not to hold the state’s Department of Health accountable for anything.

Is it only a coincidence that the same people have led and, in some respects, still lead both groups?

For years attorneys Michael Kaplen and Judith Avner led BIANYS and now they head up the council.

Avner was Kaplen’s pick for assistant council chair even though she is still the BIANYS executive director. When the two attorneys led BIANYS, Kaplen was the board president. Moreover, Kaplen was a BIANYS board member at the same time he was the council’s chair. It is worth noting too that BIANYS relies on a sizeable grant from the DOH in order to operate, a reality that makes Avner’s post on the council high-risk for potential conflict of interest and, given his past relationship with BIANYS, Kaplen faces the same risk.

Violating NY Public Officers Law

Conflict of interest did not stop Kaplen or Avner from voting for a trust fund that would have clearly benefitted BIANYS. Never mind that during a September 16, 2010 council meeting they were warned against doing so by ex-officio council member Nick Rose. The trust fund was to benefit brain-injured individuals who did not qualify for the state’s TBI Waiver and BIANYS because, according to council minutes, “the Brain Injury Association of NYS ( was to) be contracted (with) to assist with the development”of the trust fund and, it is said, receive a financial percentage of the fund itself.

Despite the warning, Avner and Kaplen voted for the fund anyway, even though doing so appeared to put both in violation of New York’s Public Officers Law. The council’s by-laws say council “members shall refrain from voting procedures in instances where a conflict of interest may exist as defined by the Public Officers Law.”

DOH Getting Carte Blanche

As an earlier blog post points out that in its lifetime the council has never really offered so much as a single proposal to the DOH regarding what can be done to help brain-injured individuals in the state, proposals like these being the very reason they were formed in the first place. Similarly, throughout its years with Avner-Kaplen duo at the helm, BIANYS never publically held the DOH accountable for anything, a pattern that has not changed under the current BIANYS leadership duo of Avner and Marie Cavallo. Cavallo is the BIANYS board president. Another recent blog post outlines some of the issues BIANYS refuses to address publically even though they have been repeatedly asked to by this writer.

The fact of the matter is one would be hard pressed to find a single example of either group holding the DOH publically accountable for its actions, including its recent attempt to throw a 66-year-old woman with a brain injury off the waiver and charge her $24,000 in the process. It is worth noting too that in an article by Rick Karlin in today’s Albany Times Union regarding this injustice there is no mention of BIANYS. BIANYS had plenty of time to release a statement to the media because I told them in plenty of time and asked them in writing to take a public stance; a written request that was ignored by Avner and Cavallo, yet both will tell you with a straight face that BIANYS is an advocacy group.

Is the reluctance to hold the DOH accountable a matter of morally bankrupt leadership in both groups, the power of the DOH, or a combination of both?

The Bottom Line

Managing life with a brain injury is a formidable enough challenge as it is. It should not be all the more formidable because groups like BIANYS, TBISCC, and the DOH reveal an across the board penchant for lip service steeped in moral bankruptcy. Something needs to be done. Maybe step one is for the leadership of all three to step down.

Federal Court Protects Disabled Senior’s Life from NYS Department of Health

2011-07-21T16:39:00.001-05:00

Federal District Court Judge David N. Hurd last week issued a temporary restraining order stopping the NYS Department of Health 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.

According to documents filed in U.S. District Court Northern Region: Francine Taishoff received a letter from the DOH in May 2011 informing her that she was no longer on the waiver as of 2008, her housing subsidy should have stopped in 2008, and she owed them $24,000 in back housing subsidy. Never mind that she’d actually been receiving waiver services when she received the May letter. Never mind that the DOH had signed off on and approved her participation and housing subsidy over the years. The letter didn’t even bother to tell her why she was being thrown off the waiver and having her subsidy ended, nor did it tell her how she could appeal the decision.

And so, without explanation, the NYS DOH appears to have knowingly put a 66-year-old woman’s life at risk and billed her $24,000 in the process. A woman who suffered a stroke while in her twenties with a monthly income of $761 and $200 in food stamps.

It will be interesting to see if tragic events like this will make the state’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council come out and fight or, will both groups, particularly the Brain Injury Association who claims it’s an advocacy group, remain publically silent as they have in the past.

One group that did not remain silent was Legal Services of Central NY out of Syracuse. Two of their lawyers represented Ms. Taishoff: Christine S. Waters and Samuel C. Young . Ms. Waters works along with the state’s Commission on Quality of Care, the latter being the state’s protection and advocacy agency for individuals with brain injury.

Why I Fight

2011-07-21T04:57:00.001-05:00

Someone asked me recently what led me to become an advocate for equal rights. Good question.

There are some rather obvious answers. I was raised in a civil rights family. Our minister marched with Dr. Martin Luther King Jr. and both my mother and father were active in taking on things like racism, anti-Semitism, homophobia, sexism when they crossed their paths.

Also, I’ve been lucky in a very real way. When I was a boy I was a ballet dancer. In that arena I met and knew and was friends with quite a few men who were gay. As a result I discovered there is no difference between straight men and gay men other than their sexual orientation. Then, a series of events landed me in reform school weeks after I turned 16. There were, as I recall, about 350 boys of which less than 10 were white. There I learned what it felt like to be a minority. I also learned that those who are black or Hispanic are no different than anyone else.

After I was released from reform school events propelled me into nearly three years of homelessness. During this experience I learned that if you are poor or homeless you are seen and treated as if you are less than human. But there too, there on the streets (we called it on the streets then, not homeless) I met men and women who were the same as all the other people I’d met in life.

For a time I was in a relationship with a remarkable woman who was Jewish. I was able to take part in Passover with her family and we became close and through them, was given a deeply special close look at what her family, and other Jewish families have been through and endured for centuries.

And then, since the mid-nineties, I’ve worked with people with brain injuries like myself and other disabilities and seen and experienced the kind of brutal heartlessness and bigotry inflicted on this segment of our population.

The point is, we really are the same and we really are equal which means we all deserve equal rights.

But there is something else that must be included in the answer to the question of why I fight for equal rights: I love life. On more than one occasion mine has almost been ended: when I was shot in the head in 1984, when, in 1974, I was held at gunpoint for nearly three hours before escaping, and then again, in 1985, when, just months after being shot, I was held-up at gunpoint. Moreover, when I was homeless I received medical treatment two times when suffering with hunger pains. And then, of course, I’ve lost three family members to suicide.

So, all this adds up to a deep love for and appreciation for life itself. And when I see forces that openly seek to deny people their right to a life of freedom and equality I’ve fought them and will continue to fight them. If I don’t, I am not only betraying my father and mother, I am betraying all those throughout my life who, because of their presence in my life, taught me we are all the same. And then there is this; if I don’t fight back, I betray life itself - and I’ve fought to hard to keep mine to do that.

BIANYS Snubs Volunteers & Support Groups

2011-07-20T08:08:00.001-05:00

The Brain Injury Association of New York State refuses to reimburse its volunteers for their out-of-pocket expenses, even if it means the end of some of its support groups.

Before I continue, it is important to note that the root of this rather bewildering stance on BIANYS’s part rests with its leadership; several sources say there are BIANYS board members and others in BIANYS’s ranks who not at all comfortable with fact the group is pretty much run by two people, Judith Avner, its executive director and Marie Cavallo, its president.

No organization runs well under the thumb of one or two people.

The genesis of this essay goes like this. Beginning in 2008 I volunteered to facilitate weekly support groups in Albany for BIANYS. BIANYS covered the necessary liability insurance and all was well. At the time, my round-trip commute to the Albany support group site was 50 miles and I was able to afford the gas. Late last year I had to move from my rental and as a result, moved to a place 75 miles from Albany. I had no intention of letting the distance stop me from facilitating the groups but the now 150-mile weekly round-trip (600 miles a month) became financially unwieldy and the group and I reached out to BIANYS (Avner and Cavallo) for help with the mileage, i.e., the cost of gas. BIANYS reimburses its staff at a rate of 50 cents a mile. I was told things were tight financially and if they were to help this group with expenses maybe the other volunteers who facilitate groups across the state would expect to be reimbursed for their expenses as well (I am fighting off the urge to say, Well, duh.).

Group members then began an email campaign writing to BIANYS (meaning Avner and Cavallo), telling them how important the groups are to their lives, and suggesting that BIANYS help with half its normal mileage reimbursement rate which would mean $150 a month for the 600 miles rather than $300. Finally, Avner and Cavallo agreed to help for three months at which point they would review things.

Well, as the end of the three months I approached I wrote in and group members wrote in asking for to continued help, Avner was away, Cavallo said she didn’t have the authority to approve even one check to tide the group over until Avner returned. Avner’s return did nothing. Then the story changed. Avner and Cavallo now said they did not have the authority to approve the help in the first place and would need to refer the matter to the board (I wonder if that ever actually happened). Finally some of the groups had to be cancelled.

Facing the lack of support from the BIANYS that still likes to claim these support groups as its own, group members agreed to cut back to only two groups a month. BIANYS – meaning Avner and Cavallo – were asked, via email, if BIANYS could help with just $75 since now we were down to two groups. Avner didn’t even bother to respond to the request and Cavallo’s response was non-committal. A second email request for $75 did not get a response from either one of them.

And this is the organization that claims to be the state’s leading organization on behalf of brain injury survivors? If you believe that, write me. I know a great bridge in Brooklyn you might be interested in buying.

BIANYS is not an advocacy organization

2011-07-16T15:29:00.001-05:00

The Brain Injury Association of NY State is not an advocacy organization despite its claim to the contrary.

Without question they are a superb source of education when it comes to brain injury and the NYS Department of Health and providers statewide would be wise to learn from them, but they are not an advocacy organization and should stop saying they are.

The Oxford English Dictionary, considered the most comprehensive English language dictionary in the world, defines advocacy as “the giving of public support to an idea, a course of action or a belief.” I can’t think of a single public stance or public statement BIANYS has made advocating for brain injury survivors in the state, certainly not when the advocating would require them to hold the NYS DOH accountable for it’s deplorable treatment of brain injury survivors, particularly brain injury survivors on the state’s TBI Waiver. While BIANYS leadership will deny they are in bed with the DOH, their actions or lack thereof indicate otherwise.

Consider the following:

If you read through past BIANYS newsletters you’d be hard pressed to find so much as a blurb about anything they are actively advocating for. BIANYS leadership will tell you, they’ve told me, that they have their way of doing things and they do advocate. I may be the first to notice the phrase, stealth advocacy. If those you claim to care about and serve are never informed of your advocacy efforts, then something is deeply wrong.
BIANYS was dead silent when it came to light in 2008 that Timothy J. Feeney, then the most powerful force in the TBI waiver, was misrepresenting his credentials to all comers, claiming to have a valid PhD and valid masters degree when he had neither. At the time DOH would close a provider down or stop a provider’s admissions solely on Feeney’s say so. I remember Feeney telling one provider that if he learned they were including cognitive therapy in their program he’d close them down. A statement like that makes incompetence look like expertise.
When the Feeney situation was brought to BIANYS’s attention by this writer (I was a BIANYS board member at the time) BIANYS made it clear they would do nothing. In fact, one board member who I will not identify, wanted to know what difference did it make if someone was lying about their credentials if they did good work.
BIANYS refusal to address the Feeney issue and advocate for the rights of brain injury survivors, their families and providers across the state led me to resign from the board. It was as if I’d part of an organization that claimed to stand against anti-Semitism yet fell silent when it was informed someone in power was abusing the trust and, in this case, clinical safety, of Jews.
When it came to light last year that the DOH issued a directive blocking service coordinators from supporting waiver participants at Medicaid Fair Hearings, a directive that can only be seen as an attempt to deny waiver participants real justice, BIANYS uttered not so much as a syllable.
Then, of course, there is the matter of the TBI Waiver complaint line which is answered by BIANYS. BIANYS has been complicit in a TBI Waiver grievance process that does not inform complainants of the results of their complaints. Once a complaint is “resolved” by the DOH, BIANYS receives written notice from DOH letting them know that the complaint’s resolution: resolved, unfounded etc. BIANYS staff are not even permitted by BIANYS leadership to inform complainants of these results.

A silent advocate is not an advocate. If BIANYS does not believe me, perhaps the words of these three folks might enlighten them (italics are mine).

Dr. Martin Luther King Jr. “Our lives begin to end the day we become silent about things that matter.”

Ruth Messinger (currently the President and CEO of American Jewish World Service). “If there's one thing that Jews understand, it's the danger of silence from the international community.”

Thomas Jefferson. “All tyranny needs to gain a foothold is for people of good conscience to remain silent.”

In the meantime, BIANYS should no longer say they are an advocacy organization - until they are.

NYS DOH considering the possibility of justice

2011-07-13T08:00:00.001-05:00

The NYS Department of Health says it will consider telling those who file complaints related to the state’s TBI Waiver – primarily people with disabilities who live with brain injuries - the results of their complaints. Currently complainants are never told. In fact, several RRDCs (Regional Resource Development Centers) throughout the state say they’ve been directed by DOH not to tell complainants the outcome of their complaints. RRDCs are agencies under contract with DOH to oversee waiver providers and participants.

On June 30th this writer sent an email to NYS Deputy DOH Commissioner Mark Kissinger which read, in part, “On behalf of Kahrmann Advocacy Coalition members and all those who care about brain injury survivors in the state, I am asking you to immediately issue a directive requiring that those who file complaints related to the TBI Waiver are to be informed of the results of their complaint within 60 days of filing the complaint. Right now complainants are never informed of the outcome of their complaints - never.”

Kissinger responded via email saying, “I will have staff look into your suggestion and get back to you within a reasonable period of time.” I’ve heard nothing yet. It takes more than two weeks to decide if justice should be served?

I wonder what DOH staff have to look into? Are people really sitting around a table somewhere wondering whether complainants should be told the outcomes of their complaints? Who would argue that they shouldn’t? Well, the DOH for one. Groups like the state’s Traumatic Brain Injury Services Coordinating Council and the Brain Injury Association of NY State need to publically speak up. Any and all groups who say they are committed to the notion that people with disabilities deserve equal justice under the law and equality on the regulatory front should be outraged, and outraged so others notice. Silence is not an option for them. To remain silent is to support the DOH’s continued assault on the rights of people who live with brain injuries.

If you want to let DOH know your feelings on this, you can write to Mark Kissinger at mlk15@health.state.ny.us or call his office at 518-402-5673.

NYS TBI Council Going to Waste

2011-07-05T09:59:00.001-05:00

For more than a decade now the NYS Traumatic Brain Injury Services Coordinating Council has offered virtually no proposals to the state’s Department of Health and the DOH has not asked for any. Apparently it doesn’t much matter that “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is mandated 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.”

Instead, more than 10 years of TBISCC meeting minutes tell us the council - under the leadership of first Charlie Wolf and now Michael Kaplen - has had a wide range of important presenters but failed to come with any real comprehensive proposals for the DOH. The list of presenters is indeed impressive: VESID, NYS Education Department, Office of Mental Heal, NYS Crime Victims Board, Office of Alcohol and Substance Abuse Services, OMRDD (now OPWDD), Office of Advocates for People with Disabilities, Mt. Sinai School of Medicine, NYS Division of Veterans Affairs, Unity House, NYS Coalition on Domestic Violence, the Brain Injury Association of NYS and more. But to what end? What is the point?

All this and more makes one wonder why the council has never come up with any comprehensive proposals that include “long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” Is the DOH wielding undue influence behind the scenes? Are there conflict of interest at play that are problematic? Are some members of the council (not all I assure you) there for rather self-serving reasons. Question: Who nominated Charlie Wolf for council chair? Answer: Charlie Wolf!

The TBISCC has an important voice and an important role to fill. It can have and should have an influential presence.

There have been moments, albeit rare ones, when the council has shown signs of life and self-awareness. Minutes from the September 10, 2002 reveal “(t)here was strong concern voiced by many members that the Council has lost its charge and needs to re-think what its purpose is.” Minutes from a September 9, 2003 meeting say the council drafted a letter to then DOH official Betty Rice expressing the council’s dissatisfaction “with not being allowed to review (TBI Waiver Manual’s) revisions.”

Then, like now, the DOH is inexcusably insular and, frankly, arrogant. Here is a state agency charged with overseeing a waiver for people with brain injuries yet they have no required brain injury training for any of their employees, contract or otherwise, and clearly no intention of availing themselves of the huge swaths of knowledge about the subject that has always been available to them with the TBISCC, the Brain Injury Association of NY State (which provides superb training on brain injury), the Alliance of TBI Waiver Providers and more.

My suggestion to the council is to prepare and make some comprehensive proposals, publicize the proposals you make and publicize the response you get from the DOH. Start with a Facebook page, and then expand.

Flipping Switches

2011-07-02T09:30:00.001-05:00

When’s the last time you saw an elected state or federal official struggling with poverty? I don’t know that there is one.

I got to thinking about this recently when I read that Speaker of the House John Boehner accused the president of ignoring reality; this from a man who no doubt uses tanning beds and is apparently oblivious to the threat of melanoma. Boehner, along with other Republicans and, don’t be fooled, a number of Democrats, are hell bent on protecting tax cuts for the millionaires and billionaires, the oil and gas companies, and they have even drawn a line in the sand when it comes to protecting the tax break big-buckers get for their corporate jets.

For many many years Ralph Nader has been right and still is right when he says the country is run by big business. That’s who is driving the car in D.C. and God forbid Obama and too few others ask them to chip in their fair share. Think the New York Times is leftwing? Don’t be so sure. A recent headline regarding the financial crisis talks about Obama wanting tax increases; a headline the Time knows damned well will lead most readers to think the president wants to increase taxes on all Americans, middle class as well as the poor, when nothing could be further from the truth.

And why would the Times opt for a purposefully misleading headline; its owned and run by wealthy folks who don’t want their tax breaks ended.

If you have plenty of money and little if any conscience, it doesn’t take much to flip a switch designed to not just protect but increase your wealth knowing full well that your switch flipping will damage some lives, destroy others, and end still others. In moments like this I am hoping there is a just God because if there is, payback will be a bitch for some of these folks. Perhaps those wounded and ended by their greed will offered a chance to watch the payback if they want to.

I wish I could flip a switch that would turn off the greed-based decision making spewed by too many of our wealthy elected officials.

NYS TBI Waiver complaints: the fix is in

2011-06-27T07:35:00.001-05:00

If you are on the NYS Traumatic Brain Injury Waiver and you file a complaint with the NYS Department of Health you will never be told the outcome. The DOH has it fixed so they don’t have to tell you. Their complaint line agreement with the Brain Injury Association of NYS does not require them too to tell you. More moral and ethical corruption from the state’s leading renegade agency which makes a laughing stock of the new governor and the new DOH commissioner.

If you are one of the nearly 3,000 New York adults on the waiver you are told to call the waiver complaint line fielded by the Brain Injury Association of NYS. BIANYS staff will always treat you with respect and compassion. However, that might be the end of your respect and compassion experience unless of course someone from the RRDC’s (Regional Resource Development Center’s) office calls you to ask about your complaint and there too, you might, though not always, get treated with compassion. RRDCs across the state are contracted with DOH to oversee waiver providers and participants in their respective regions.

After your talk with someone from the RRDC’s office (there are many instances where you don’t even get that much attention), all compassion and respect stops. You will never learn the outcome of your complaint. Several sources around the state have told this writer that the DOH makes it clear they want the complaints minimized if not ignored and abandoned altogether.

This is ethical corruption pure and simple and it needs to stop. Groups like the TBISCC, BIANYS and DOH need to address this as soon as possible.

The following is the actual complaint line protocol:

TBI Complaint Line Protocol – Updated 1/2010

1. BIANYS conducts complaint intake and completes the BIANYS portion of the complaint form.
2. BIANYS emails complaint to DOH TBI Waiver Program.
3. DOH staff emails the complaint intake form to RRDCs. (If determined a Serious Reportable Incident, DOH staff contacts RRDS immediately by phone and check the appropriate SRI box on the form. DOH staff will follow up by emailing the complaint intake form to RRDS.) In those instances where the complaint is directed at the RRDC, DOH assumes responsibility to investigate.
4. RRDC confirms receipt of the complaint with DOH.
5. RRDC staff contacts the participant within two business days that the complaint has been received and investigation is in process.
6. RRDS investigates the complaint and completes the RRDS portion of the complaint form.
7. RRDS returns the completed form back to DOH within 30 days.
8. BIANYS will be notified when the complaint is closed via email.
9. BIANYS will provide DOH a monthly report of complaints.
10. DOH waiver staff meets monthly to review open complaints & discuss outstanding issues.

Essential Elements of RRDC Investigation

a) Provide a brief description/summary of the complaint.
b) Provide pertinent demographic information of the participant and any other people related to the complaint.
c) Provide a summary of all completed interviews or statements of fact.
d) Provide a summary of documents and any evidence reviewed.
e) Provide a description of your findings and analysis of the event.
f) Describe all corrective actions taken.
g) Describe the current status of the complaint and/or participant and any conclusions indicated by the investigation. The Complaint Form must indicate the final status and disposition of the complaint e.g. allegation/complaint confirmed/substantiated, allegation disconfirmed
h) Complaints are to be maintained in a regional and DOH database and reviewed on an annual basis to establish trends, patterns and systemic issues.

NYS DOH Threatens Advocate’s Home

2011-06-23T08:51:00.001-05:00

In what can best be described as an astonishing but not-surprising act of callousness, the NYS Department of Health has decided to take away a housing subsidy it already approved for a brain injury advocate. They say they are doing this because of paperwork mistakes – paperwork mistakes they made.

It will come as no surprise that I am the advocate in question and it will certainly come as no surprise that Maribeth Gnozzio aka Maribeth Janiszewski of New Jersey corruption fame played a role in the decision.

Here’s the background. I am on the state’s Traumatic Brain Injury Waiver. Earlier this year with the help of my case manager, they are called service coordinators in TBI Waiver parlance, I applied for a housing subsidy. The application made its way through the process and the DOH approved it. However, the DOH approved the housing subsidy under the states’ Nursing Home Transition Waiver, or the NHTD Waiver as it is commonly called. Now, because of their mistake (Was it a mistake? Or was it a set-up as some are already asking) they’ve decided I’ll pay for their mistake and lose the subsidy.

I’ve been told my subsidy will end as of July 31st and, well, that’s just too bad as far as DOH is concerned. When my case manager had a phone conference with them, who was on the call, making sure no flexibility was allowed? Gnozzio.

When the idea of my transitioning from the TBI Waiver to the NHTD Waiver was proposed, the answer was sure, he can transition, but he still loses the subsidy, too bad if he loses his home.

They should stop calling themselves the Department of Health because health is the last thing they’re concerned with. Maybe they should just call themselves, the Department.

It seems likely I will be approved for a Section 8 subsidy in the next few months, unless, of course, the DOH can find a way to sabotage that too. Bridging the gap between subsidies is the dangerous part of the equation.

If you are wondering if the DOH’s behavior is going to make me back off on my advocacy, not a chance. After all, I’ve been shot in the head at point blank range. I’m not about to be intimidated by a renegade state agency nor some pitiful corruption story from New Jersey.

Notes on NYS’s TBI Council

2011-06-22T10:34:00.001-05:00

You simply can’t make it up.

The Traumatic Brain Injury Services Coordinating Council meeting Monday was chaired by Michael Kaplen who flashed some anger during the meeting which would have been laughable were it not so disrespectful of council members and, frankly, brain injury survivors. It earned Kaplen the crown for the meeting’s most despicable moments. On top of that, the NYS Department of Health’s report on the status of the state’s TBI Waiver is something you would have missed if you made the mistake of blinking.

Kaplen’s inexcusably despicable moments came in the wake of an attempt by a brain injury survivor in the audience to ask a question. Kaplen interrupted the survivor telling him there was a protocol which required members of the public to wait until all council members had asked their questions. Kaplen, who is forever proclaiming himself an expert in brain injury, seems to have forgotten that some who live with brain injuries have memory challenges and may not remember their questions. When council member Bill Combes of the state’s Commission on the Quality of Care offered to cede his question time to the survivor, Kaplen became visibly angry with Combes. Kaplen was equally angry with council member Barry Dain who pointed out that survivors of brain injury are often faced with cognitive challenges that include memory deficits.

Kaplen’s finger-wagging anger is childish in the best light, bully-like in the worst, and clearly not the kind of behavior one wants in a council member much less the council’s chair. As for the protocol he referenced, neither the council’s bylaws nor Robert’s Rules of Order – something council bylaws require the council follow - preclude the council from allowing members of the public to ask questions during the meeting. Kaplen apparently does not feel he is beholden to Robert’s Rules which require that remarks by council members “be courteous in language and deportment.”

When the DOH’s Charlotte Mason reported on the status of the TBI Waiver she said all things were pretty much the same as they were at the time of the last council meeting, entirely omitting the fact the DOH ended the statewide neurobehavioral project with no discernible transition plan in place, leaving everyone with no concrete reason to believe plans have been made to continue those badly needed services in any shape, manner or form. Moreover, Mason did not mention the DOH’s continued assault on services being received by waiver participants nor what some consider a willful effort to discharge as many people from the waiver as possible. Other than council vice-chair Judith Avner asking about the end of the neurobehavioral contract and Combes asking if the DOH had any information about service coordinators being prevented from siding with their clients at Medicaid Fair Hearings, council members asked not a single question about the TBI Waiver.

The DOH’s Mary Ann Anglin answered Combes’ question by indicating a document was being prepared addressing the fair hearings matter which was indeed the very same thing the DOH said months ago.

Is it any wonder members of the real advocacy community and some members of the council itself are clearly frustrated with a council that seems to do just about everything but follow its mandate which, according to its own bylaws, includes “recommending to the (NYS) Department (of Health) long range objectives, goals and priorities. It shall also provide advice on the planning, coordination and development of services needed to meet the needs of persons with traumatic brain injury and their families” and a council that seeks to anything but hold the DOH accountable for its actions?

While both Bill Kraus, acting director of the NYS Division of Veteran’s Affairs, and Tim Donovan of the SUNY Youth Sports Institute, offered impressive presentations about how their respective groups were addressing the challenge of brain injury, Kaplen questioned both men choosing to focus on what they weren’t doing rather than giving them well-deserved credit for the good work they are doing.

During the public comment session at meetings end this writer asked two things of the the council on behalf of the Kahrmann Advocacy Coalition:

To review the current TBI Waiver complaint agreement between the DOH and the Brain Injury Association of NY State. The current protocol does not require the DOH to inform complainants of the outcome of their complaints. To my knowledge, complainants are never informed. The current complaint line protocol is absent all presence of justice and is morally and ethically corrupt.
To hold public hearings and invite survivors of brain injury, their family and friends, as well as providers of TBI Waiver services, to report to the council on what they are experiencing with the TBI Waiver.

This writer has filed a FOIL request for all council minutes. It will be interesting to learn how much recommending the council has actually done under Kaplen’s watch and under the watch of his predecessor, Charles Wolf. How many proposals has the council actually presented to the DOH and what has been their fate? Those of us who live with brain injuries as well as our loved ones and the providers across the state who try to help us have a right to know.

It was, I am sure, no coincidence that no copies of meeting minutes were made available for the public at Monday’s meeting. You can request copies of the TBISCC minutes by emailing Cheryl Veith at the DOH: cld02@health.state.ny.us You can also ask that you be put on the mailing list to receive notice of upcoming meeting and copies of the agendas as the become available. The next TBISCC meeting is September 12.

Will NYS DOH mend its ways and dump Gnozzio?

2011-06-21T07:51:00.002-05:00

If the sources that say Maribeth J. Gnozzio’s contract with the NYS Department of Health expires August 31 are correct, the question is will the DOH put New Yorkers first and sever all ties with Gnozzio?

As readers of this blog already know, Gnozzio, also known as Maribeth Janiszewski, oversaw a fund established by her husband, Robert C. Janiszewski, a former County Executive in New Jersey, who pled guilty in 2002 to taking more than $100,000 in bribes. Records show that as soon as he began helping the feds he began “directing campaign funds (in excess of $200,000) to a private campaign account” that was placed in Gnozzio’s name. More than one person believes Mr. Janiszewski worked with the feds in part to protect Gnozzio from prosecution.

All of us have skeletons in our closet, some of us learn from them and mend our ways, other don’t. Given Gnozzio’s treatment of people, her treatment of providers and her treatment of some of the Regional Resource Development Centers, it is clear she hasn’t mended a thing. It was, for instance, Gnozzio who gave the verbal directive that service coordinators, i.e. case managers for people on the TBI Waiver, are not to side with their clients in Medicaid Fair Hearings. The DOH, by the way, has still not put their position on this matter in writing.

My guess is that given her connections in the Democratic Party – her husband was at one time considered one of New Jersey’s top three Democrats – somebody figured stashing her in the NYS DOH would be a safe place to put her, which would have been true, had she mended her ways.

Will the DOH mend its ways and dump Gnozzio or will it continue as the state’s renegade agency, ignore the governor’s call for ethics reform, and make a laughing stock of Nirav R. Shah, the new DOH Commissioner?

An Ethically Challenged NYS DOH Official?

2011-06-19T10:24:00.001-05:00

Is the NYS Department of Health opposed to Governor Andrew Cuomo’s call for ethical reform in state government? A close look at those the DOH selects to manage the state’s traumatic brain injury waiver may lead some to conclude the answer is yes.

According to news reports, the DOH’s Maribeth J. Gnozzio took control of a highly problematic fund established by her husband, Robert C. Janiszewski, a former County Executive of Hudson County, New Jersey, who pled guilty in 2002 to taking more than $100,000 in bribes, right before he resigned from office on September 7, 2001. At one time, Janiszewski was considered one of NJ’s top three Democrats.

While the fund was called the The Hudson County Community Fund with a stated purpose of raising money for community projects, all indications are it was inappropriately used to raise campaign funds for Janiszewski. In March 2001, Janiszewski agreed to work with Federal authorities in an anti-corruption sting after being confronted with a video of himself accepting a bribe from Union City psychiatrist Oscar Sandoval. Records show that as soon as he began helping the feds he began “directing campaign funds (in excess of $200,000) to a private campaign account” that would soon be put in Gnozzio’s name and use a Newark P.O. Box as its address.

In a 2003 interview, the late Paul Byrne, a childhood friend of Janiszewski’s who was indicted for collecting thousands of dollars in bribes for Janiszewski, said Janiszewski gave him up to spare Gnozzio from prosecution. Byrne’s attorney at the time, John Coyle, is quoted as saying, “"It is another attempt by the government's witness, Robert Janiszewski, to shift blame for his greed and corrupt political leadership in an attempt to further his own interests and to protect his wife from prosecution." Understandable from Janiszewski’s point of view given that Gnozzio held the bible for him when he was sworn in as county executive in 1988.

One question, from the vantage point of a brain injury survivor living in NY who is on disability and the TBI Waiver, is what on earth are the DOH’s vetting practices and do have they have any vetting practices at all?

Is no one troubled by the fact Gnozzio has already established herself as non-responsive to the advocacy community, not entirely respectful of the Regional Resource Development Centers around the state, as well as being the one who issued the verbal directive to RRDCs statewide that TBI Waiver case managers cannot support their clients at Medicaid Fair Hearings? Moreover, how is Gnozzio, with her ethically challenged background, even qualified be in the world of brain injury in the first place? How and why is she allowed so much power?

If she was vetted, and all the aforementioned facts were known, then those who vetted her and hired her should be fired. If she was not vetted and the aforementioned facts were not know, then those who dropped the ball should be fired. Perhaps a clean slate, including replacing Deputy DOH Commissioner Mark Kissinger, would be the ethical place to start

Brain injury survivors deserve better, health care providers deserve better, the RRDCs deserve better, and New Yorkers as a whole deserve better.

NYS DOH ends contract with Feeney

2011-06-16T15:52:00.001-05:00

It seems the efforts of this pen, the Kahrmann Advocacy Coalition, and others have finally paid off. Sources say the NYS Department of Health has cancelled its contract with Timothy J. Feeney et al effective the end of this month.

This writer revealed in 2008 that Mr. Feeney misrepresents his educational credentials. He claims to have a valid masters degree and PhD when he has neither. Over the past three years this writer along with other real advocates – not the lip-service advocates in the state who seek headlines based on words not actions – have worked hard to have Mr. Feeney removed from his post in the Statewide Neurobehavioral Project, a group that was affiliated with the state’s Traumatic Brain Injury Waiver. Sources say the DOH has terminated the contract in its entirety.

Those who know me well, I mean really know me well, know I take no pleasure in Mr. Feeney’s demise nor in the demise of the other staff that worked in the project. However, like all of us, they are accountable for their choices. I am, however, very glad that survivors of brain injuries on the TBI Waiver, their families, and the many truly good providers of waiver services will no longer have to deal with Mr. Feeney. Life with brain damage is tough enough, dealing with dishonest people at the same time you are trying to learn how to manage life makes it all the tougher.

I have little doubt Mr. Feeney will continue to misrepresent himself in any venue he can. Hopefully others will be pick up where the DOH left off and require he be honest or remove him from the field.

The NYS DOH has very little to be proud of when it comes to its oversight of the TBI Waiver; however, it can be proud of the decision to end the contract.

TBISCC Agenda for Monday, June 20, 2011

2011-06-15T17:49:00.001-05:00

Note to blog readers: This is a public meeting. If you want to comment during public comment time at end of meeting, be sure to put your name on the public comment sheet when you arrive so you get your chance.

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

Empire State Plaza, NYS Museum Meeting Rooms A & B

(Concourse level of NYS Museum)

Monday, June 20, 2011

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome, Introduction of New Member, Review and Approval of Minutes from December 6, 2010 and April 14, 2011 Meetings

10:45am – 12:00pm Training for Volunteer Coaches: Sports Concussion Awareness - Timothy Donovan, SUNY Youth Sports Institute

12:00pm – 12:45pm LUNCH (members on their own)

12:45pm – 1:10pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

1:10pm –1:40pm NYS Veterans’ Update on Brain Injury - Bill Kraus, Acting Director, New York State Division of Veterans' Affairs

1:40pm – 1:45pm TBI Waiver Update-NYSDOH

1:45pm – 1:55pm TBI SCC – Vacancies/Expired Appointments - Cheryl Veith, NYSDOH

1:55pm – 2:05pm HRSA Grant Five Year Plan Update - Helen Hines, NYSDOH

2:05pm - 2:50pm Overview of Uniform Assessment System (UAS) - K. John Russell, Project Director - University at Albany, School of Public Health

2:50pm – 3:05pm Carry Over Issues from Last Meeting

3:05pm – 3:20pm Public Comment/Summary/Next Steps/Adjournment

3:20pm – 3:30pm Meeting Wrap-Up/Date for Next Meeting

Justice 1 NYS DOH 0

2011-06-06T08:15:00.001-05:00

It took the combined efforts of the NYS Commission on Quality of Care, an RRDC (Regional Resource Development Center) with real principles, the Kahrmann Advocacy Coalition, and the threat of legal action to get the NYS Department of Health to drop its efforts to block this writer’s request for three-white noise machines needed to manage marked noise sensitivity secondary to my brain injury.

A complete recount of my efforts to get the white-noise machines and the DOH’s determination to prevent me from doing so can be read in a preceding blog post. Suffice it to say that a ruling resulting from a December 1, 2010 Medicaid Fair Hearing overturned the DOH’s denial of my white-noise machine request, telling them that they needed to consider more evidence documenting the need for the machines.

More evidence was provided and the Southern Tier Independence Center, the RRDC in my area, sought to approve the request before the DOH’s Maribeth Gnozzio stepped in and blocked the approval. How do you spell retaliation? Try G-n-o-z-z-i-o. However, were Gnozzio the exception to the rule at DOH she’d be long gone, but she’s not, which tells us she is an example of what the rule is at the DOH, and those DOH employees who do care, are in the minority.

Once Gnozzio blocked the white-noise machine request a request for an expedited Medicaid Fair Hearing went into effect. Once that happened, and once, I am sure, Gnozzio and the DOH realized their actions would accurately be seen as retaliation, a knowing attempt to harm me, and a flat-out violation of the ADA, they backed off. Gnozzio and the DOH also realized they were dealing with an RRDC who truly does care and was not about to back off its principles for anyone.

If the DOH wants to reveal that Gnozzio is an exception to the DOH mindset or signal that it is committed to changing it’s mindset, I’ve got a two-word suggestion that would go a long way on both fronts: fire Gnozzio.

Complete Where I Am

2011-05-31T09:18:00.001-05:00

I am complete where I am; loss does not incomplete me.

While loss does not incomplete me, I’m tired of it, though my weariness has no bearing on life; life happens to us whether we like it or not. It is how we react that makes a difference, or, if we are not paying attention, makes no difference at all, and leaves us trapped in sameness, an unpleasant cell if ever there was one.

We are, each of us, whole and complete, simply because we are. Voices, experiences, messages, losses, all these things can lead us to believe that without something outside ourselves we are not whole, not worthy, that somehow without the presence of another, of something, we barely exist, if, in fact, we exist at all.

I am complete where I am; so are you. Loss does not incomplete me, nor does it incomplete you.

Be you. You’re already there.

Live.

Saying no to BIANYS

2011-05-26T06:55:00.001-05:00

I will not be speaking at the Brain Injury Association of New York State’s annual conference next month and quite a few people are asking why.

While no one supports the BIANYS mission statement any more than I do, all of us, individual and group, need to be right-sized from time to time. All of us, simply because we are human beings, can lose sight of what is truly important and, as a result, our priorities get a bit skewed, albeit unintentionally in some cases. And that, in my view, is what has happened with BIANYS.

While there is no question that BIANYS is probably the most effective teaching voice in the state when it comes to brain injuries - it sponsors and co-sponsors events that provide enormous amounts of desperately needed information - its claim to being the state’s leading advocacy group for survivors of brain injury is simply not true. No individual and no organization can rightfully claim the mantel of advocacy yet remain publicly silent in the face of real threats to those they claim to represent.

You cannot claim the mantel of advocacy yet remain publicly silent when the state’s department of health issues a directive telling TBI Waiver case managers they cannot side with their clients at Medicaid Fair Hearings, a savage directive that all but assures the brain injury survivor will come out on the losing end.

You cannot claim the mantel of advocacy yet remain publicly silent when in 2008 it is revealed that Timothy J. Feeney, at the time the most powerful force in the TBI Waiver, is misrepresenting his credentials to brain injury survivors, their families and providers and then continue your public silence when the DOH essentially enters into another contract with Feeney knowing full well he continues to misrepresent his credentials.

You cannot claim the mantel of advocacy yet remain publicly silent when the DOH looks to cut as many people from the waiver as possible and slash waiver services at every available opportunity.

You cannot claim the mantel of advocacy yet remain publicly silent when the DOH all but ignores an alliance of TBI Waiver providers who are simply asking for uniform billing procedures and fair treatment, when the DOH’s utter - and I think intentional - mismanagement of the TBI Waiver has resulted in providers dropping out across the state, a reality that wounds the lives of many survivors of brain injuries.

It is hard, if not impossible, for brain injury survivors, their families, and the dwindling number of providers to believe BIANYS is an advocacy organization when the aforementioned are under assault and BIANYS is nowhere to be found. It is true that BIANYS has a group of remarkably committed staff known as FACTS Coordinators who do advocate, but because they are paid through a grant from OPWDD, they are only allowed to advocate for those who sustained their brain injury before the age of 21 and their advocacy efforts do not extend to the arena of public policy and DOH directives.

I know, from nearly a half dozen sources, that nearly all the FACTS Coordinators were and are utterly disgusted with the Feeney situation, but their honorable and heartfelt opinions were not enough to lead BIANYS leadership to take a public stand

Having said all this, the rather monumental flaw in the BIANYS advocacy claim is not my reason for saying no to their invitation to speak at this year’s conference. My reason for saying no revolves around the nature of the speech they asked for and their failure to support five BIANYS support groups. The circumstances surrounding the invitation to speak are somewhat suspect as well. When the lack of an invitation to facilitate a workshop at the conference began to get noticed, I was invited to speak the second day of the conference to motivate attendees to pull together and join BIANYS.

Many feel the absence of a workshop invitation being offered to me this year was a sign BIANYS is distancing itself from me, primarily because I openly hold the DOH accountable for their treatment of brain injury survivors and BIANYS gets a sizeable grant from the DOH. While BIANYS denies this, perception is often more powerful than fact. I know of no instance in which BIANYS has publicly disagreed with or challenged a DOH decision, leaving the perception that DOH is calling the shots on both fronts.

For me, an attending reality that revolves around a weekly Albany support group I voluntarily facilitate for BIANYS was the drop that overflowed the cup. When I moved last November from the outskirts of Albany to my current home I was not about to abandon the Saturday groups. However, my weekly commute went from 50 miles to 150 miles, 600 miles a month. Given that I am on a fixed income, BIANYS was asked to help with mileage reimbursement. It is worth noting that volunteers are typically reimbursed for their expenses because most groups want to keep their volunteers and the reimbursement is a valid business expense.

BIANYS reimburses at 50 cents a mile which, if applied to 600 miles, would be $300 a month. BIANYS said it was low on funds and we suggested they cut the number in half and help us with $150 a month. Finally, after receiving a number of emails from group members, they agreed to $150 a month for a three-month period at which time, they said, they would re-evaluate the situation. Given the heads up that the three months was ending, followed by another email campaign from group members, BIANYS suggested that the matter be handed over to a workgroup for study. BIANYS leadership then announced they could not make the decision because it was a matter that needed to be brought before the board of directors for review. They’d never said this before.

I sent them an email saying that in good conscience I could not stand in front of several hundred survivors, family members and providers and urge them to join BIANYS because BIANYS truly cares while at the same time knowing that BIANYS leadership was, supportive words aside, not inclined to help five support groups with mileage cost. The importance of support groups in the lives of survivors of brain injury, their families and members of the community is huge. There is something unseemly about claiming support groups as your own while at the same time not supporting them. I told BIANYS leadership if they agreed to help these groups I’d be happy to speak at their conference.

They have not agreed to help and I will not be speaking.

On the positive side, BIANYS leadership and I will be meeting at my home sometime soon after the conference and it is my sincere hope that all these matters will be resolved and, if they are, I’ll be present and supportive for sure at the 2012 conference.

Goodbye My Sponsor

2011-05-25T13:38:00.001-05:00