*
Rhythm moving moments remembering soft
Sweet tongues in sweet wood rhythm
It’s good to be alive
*
Shifting sound breathes flesh to flesh
Memory deep in glistening time
It’s good to be alive
*
The curling bend of a guitar note
Glistens a tear to my eye
It’s good to be alive
*
Your voice calling across the nighttime sky
To me crying standing up again
It’s good to be alive
*
Come tomorrow’s daylight rising
I’m my father’s son I am always
It’s good to be alive
*
*
O sweet words hold me close
You my perpetual company
Friends and family all
Removing my heart’s chill
*
O sweet words take my hand
You my daily allies
Near and distant
Always there warm waiting
*
O sweet words my family
Gift of family for me
When close to you
It is then I’m free
*
What is becoming increasingly clear is the absence of regulations, the absence of clear cut policies and procedures, leadsto chaos and chaos leads to suffering. I am talking here about New York State’s Traumatic Brain Injury Waiver which is overseen by the state’s department of health. While recent posts have detailed the kind of callous treatment I’ve been enduring at the hands of the state’s DOH, I am not alone. Many are going through the same kind of experience throughout the state.
To date there are more than 50,000 readers of this blog and from time to time some of them take me to task, sometimes harshly. But, to their credit, their opinions are driven by the search for truth, a justifiable desire to hold me accountable, and, at times, a straight-up difference of opinion. In other words, they hold my feet to the fire and sometimes when they take me to task, they are right. I’d be a fool to be anything but grateful to them, and I am. Very.
What is markedly absence from my readers when they take me to task is lip service. They say what they mean and mean what they say. The substance of their honesty is refreshing. They are a lesson in the absence of lip service, a lesson that ought to be learned by some in the department of health and even some in the advocacy community who say all the right things but do nothing. After all, we are talking about people’s lives, the quality of their lives and, in some cases, their ability to keep their lives.
A Dangerous Combination
The absence of regulations coupled with a penchant for lip service is a dangerous combination.
Some weeks ago I met with three DOH officials: Deputy Commissioner Mark Kissinger, Director of Division of Home & Community Based Care Services Mary Ann Anglin, and Deputy Director of the Office of Long Term Care Carla Williams. Truth be told, I genuinely like all three of them. Mr. Kissinger certainly seems to be a good and decent man whose heart is in the right place. Ms. Williams is an extremely sharp refreshingly no-nonsense individual and Ms. Anglin is an extraordinary thinker and communicator.
There are, however, two things (among others) that an advocate has to be careful about. One, as an advocate you can’t allow the fact you dislike someone or that someone dislikes you to drive your decisions. Conversely, you can’t allow the fact you like someone or that someone likes you to stop you from holding them accountable. Advocacy is not pain-free.
During this meeting Carla Williams said the state’s TBI Waiver is the best of its kind in the country. Well, a couple of things. Certainly having a waiver is far better than not having a waiver. No argument there. But, if New York’s waiver is the best in the country, that doesn’t say much for the waivers in other states, because New York’s waiver, which is absent any clear regulations, is, sadly, a minefield of dysfunction.
The Providers Alliance, a group of about 40 companies that provide waiver services has clearly documented that no clear-cut billing policy for waiver providers around the state exist and this has proven highly problematic and costly, both for the providers and survivors.
There have been instances, for example, when a doctor will issue a written order directing that a survivor needs staff to be with him or her throughout the day. The provider is compelled to, wants to and does provide the staff right away. The problem is there are times the DOH has not signed off on the service and may not do so for weeks, which means the provider may not get reimbursed for the service they’re providing.
To its absolute credit, the Providers Alliance has provided the DOH with a carefully thought-out series of recommendations to improve the unwieldy TBI Waiver manual (I’ve seen their work, it is superb), yet there has been no real response to their efforts. Curiously, the TBI Waiver manual lists six indexes, none of which are present in the manual!
Moreover, the DOH is informing quite a few survivors of brain injury around the state that there services will be cut and, in some cases, discontinued all together. The problem here is these decisions are being made by people who have utterly no understanding of brain injury, much less any real working knowledge of the human brain.
Actions Speak Louder than Words
Once when I was a boy I complained to my father about the fact some phrase was a cliché. My father, the greatest gift life has ever given me by the way, smiled and said, “Well, Pete, there’s a reason they become clichés.” He was right.
Which brings me to the cliché, actions speak louder than words.
So, let’s compare Words versus Actions:
Words: The TBI Waiver manual provides a list of participants rights on Page 6, one of which reads says participants must “Be treated as an individual with consideration and respect”.
Actions: Waiver participants, including this writer, are having their services cut, reduced or delayed by the DOH without warning and, in my case and certainly others, without explanation. Moreover, requests for explanations are largely ignored. Consideration and respect?
Words: Participants must “Be treated as an individual with consideration and respect”.
Actions: Capitol Region RRDS Natalie Marabello implies this writer is feigning the need for a life alert and white noise machines and further implies that he is wasting her time. Result? Ms. Marabello is promoted to Lead RRDS. Consideration and respect?
Words: DOH officials insist they will decide whether to approve requests for things like life alerts and white noise machines along with other forms of assistive technology and, in some cases, mediations, on the merits, and, in this effort ask for documentation from doctors supporting the request.
Actions: This writer and others across the state have requests in from assistive technology with the required letters from both a doctor and psychotherapist, the RRDC has signed off on the request and the DOH still does not sign off on it. What form of measurements, specifically, does the DOH use to determine the merits?
Words: One section of the participants rights in the TBI Waiver manual reads, “Have your complaints responded to and be informed of the resolution.”
Actions: The waiver complaint line protocol between the Brain Injury Association of NY State and the DOH not only fails to set forth any time lines within which a complainant must get a response, it fails to mandate that a complainant get a response at all.
The point is, all parties need to get together to resolve this, the DOH it seems has a penchant for behaving in a rather insular fashion, and this serves no one’s interest, unless of course we are talking about Social Darwinism and all that drives the DOH is a desire to be the big kid on the block.
My hope is that all will come together and resolve all this, because in the mean time, survivors, families, and providers are suffering.
Next Monday I will go back to the Belvedere Brain Injury Program to talk with survivors and others about the Kahrmann Advocacy Coalition (KAC), the largest survivor-led advocacy coalition for brain injury survivors in the state. It will be my first time back since I was forced out in early 2008 because I would not remain quite when I saw survivors being denied their rights by some (not all) of the leadership in Belvedere’s substance abuse program. Moreover, until now, Belvedere has been, not surprisingly, the only brain injury program in the state that blocked KAC from presenting. The change in their stance is most welcome.
Neither I nor KAC is Belvedere’s enemy.
But this essay is not solely about the politics and power-play of things. It is also about my relationship with a group of remarkable people who attend Belvedere’s day programs. We worked together for years, and our bond, then and now, is deep-in-the-heart close. The forced end to our work together was not simply a brutal one for me emotionally and, for that matter, physically, it was a brutal one for the survivors. I know this because they’ve told me.
In fact, they were so upset then they got a petition together asking for my return and every single survivor signed it and presented it to the owner, John Mccooey. In response Mccooey, who I had for some time considered a friend, met with them and said, no, I couldn’t come back because of forces beyond his control, a excuse that is doubtful at best. About Mccooey: despite his brutal treatment of me in the end, were he hurt tomorrow I’d help him. Doesn’t mean I trust him, that would be something he’d have to earn back, but I’d still help him.
Mccooey back then told me Tim Feeney wanted me out and, by default, so did Pat Gumson and Bruce Rosen, the two New York State Department of Health officials who headed up the Traumatic Brain Injury Waiver at the time. I don’t know how much weight I actually give his excuse. It doesn’t matter though because Feeney has been rather right-sized, Pat Gumson has retired, and Bruce Rosen is working in another area for the DOH, and I’ve not been invited back. The main obstacle to my return was and is Mccooey and, I suspect, his somewhat misguided allegiance to a rather dysfunctional individual who heads up his substance abuse program, the same individual, by the way, who most actively demeaned survivors and denied them their rights.
I was recently asked (not by anyone from Belvedere) if I would be willing to facilitate workshops at Belvedere again. My answer revolves around what is always my focus in matters like this; what is the healthiest choice on the table for the survivors and for me. Were their a healthy way to go about it, I’d certainly consider it. But I would not consider it if I were to again be at risk for bogus accusations from the above referenced dysfunctional individual or anyone else for that matter. To give you an idea of what I’m talking about, I once apologized to Mr. Dysfunction for a misunderstanding and gently touched his shoulder. The next morning I learned that he’d gone scurrying upstairs like a whiney little brat to file a workplace harassment charge against me because I touched him! The charge was dismissed by the way (duh).
Anyway, it will be good to see these folks Monday. They already know, and perhaps Belvedere will figure out, that neither I nor KAC are anti-provider, not even when the provider is Belvedere. We are pro-anything that supports equal rights for all and legitimately helps people living with brain injuries achieve their maximum level of independence and we are against anything that doesn’t. As for my future with Belvedere let me just say: One day at a time.
Monday will be a good day. It will be good to see them and it will be hard to say goodbye.
No words of any kind, past, present or future, can do my father justice. No matter how I tell you about the ineffably loving and accepting man that was and in my heart and soul is my father I will not come close. I’d have more of a chance of giving you the actual physical experience of summiting Everest via email. My father was, in a word, a miracle.
I can tell you that to this day my father is the greatest gift life has ever given me. And while he died at age 55 when I was 15, his presence in me has never diminished. He died Saturday, August 16, 1969. We were living in Nyack, New York, a lovely community about 30 miles north of New York City. My father has been struck down with a case of peritonitis three days earlier and was in a coma in an iron lung in St. Luke’s Hospital in upper Manhattan. My mother didn’t go see him, she explained, because he was in a coma and wouldn’t know she was there anyway. While I understand, now, that my mother’s very real emotional frailty (she would commit suicide in 1992) prevented her from handling the emotion that comes with visiting your dying husband in a coma, it still tears me apart knowing my father died alone.
My father was born February 20, 1914 in Elizabeth, New Jersey. He had one sibling, my Uncle Harry. Uncle Harry was one year younger than my father and I adored him. Both joined the Army and fought in World War II. Many years after my father’s death I learned that his division, the 20th Armored Division, was one of three American divisions that liberated the Dachau concentration camp on April 29, 1945. My father never said a word about this.
Ultimately my father taught English at Columbia University and John Jay College of Criminal Justice. He was brilliant and humble. Remarkably, he was utterly free of bigotry. He didn’t care if someone was black or white, Hispanic or Asian, gay, straight or bisexual. He accept people for who they were and had little problem pushing back against bigotry. For example, when we moved to our house in Nyack we were still selling our house in Pearl River, a nearby community. We were well known for being a civil rights family, our minister, for example, marched with Dr. King many times. Anyway, one day my father went back to check on the house and someone had painted the words Nigger Lover on the picture window. Rather than remove the words, my father painted the words And Proud of It underneath and left.
My father fully accepted me for being me and when he died, my ability to feel safe being me in the world died with him. That sense of self-safety would not begin to return until I began my sobriety nearly eight years ago now.
I can tell you that I felt it, physically felt it, the moment he died.
On the morning of August 16th we received a call from the hospital telling us my father wouldn’t live out the day. The house was like a morgue, all of us home, waiting. A couple of my friends had come over to be with me. I was upset the hospital was in the city and I couldn’t get to my father’s side. A little after 1:30 in the afternoon I told my mother my friend and I were going to walk into town to pick up some soda. It’s about a 20 minute walk. We were more than half way there when suddenly the bottom of my stomach dropped out and I doubled over, hands on my knees. I looked up at my friends and said, “He just died.”
When I got home after two I walked into the kitchen. My mother was at the counter, she turned to me and said, “Peter, it happened.” My father had died at 1:53 p.m.
My father was born on February 20 and I was born on October 2. If you start out on October 2 and count out the same number of days that run from February 20 to August 16, you reach today, March 28. I am 56. When the clock strikes 1:54 this afternoon, I will have outlived my father by exactly one year. When the clock struck 1:54 p.m. on March 28 last year, the exact moment I passed him in time, my hand was on his gravestone. There was no way he was going to be alone then. I knew that until that moment he had cleared the trail for me in life. I also knew that from that moment on, I would be clearing the trail for the both of us.
All my days are for my father.
_____________________
Peter S. Kahrmann - Est. 1953 