Monthly Archives: November 2010

My Daughter’s Moment

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Her mother tells me, “If you tell her you were shot I won’t let you see her anymore.” Coming from my daughter’s mother this was not an empty threat.

At the time of this threat, leveled at me 10 days after I’d been held up and shot in the head at point blank range in August 1984, she’d already stopped me and my daughter and from seeing each other for two prior stretches of time. And even though I took her to court on both times and won both times, I learned that in 1984 the rights of a non-custodial father were, at best, symbolic. There was no meat on the bones of their armature. In fact, the second time I took her to court the judge caught her lying and ripped into her before once again ruling in my favor. Didn’t matter. Went to pick up my daughter the following weekend and her mother and my  daughter had vanished. For all intents and purposes, she’d kidnapped her.

When I called the court and said, Okay, she’s taken my daughter, she’s violating my visitation rights, what are you going to do about it? The answer was, Nothing. Let us know if you find her and you can bring her in on a shown cause order –again.  It was three months before her mother brought her back, telling me my daughter was giving her hell and if I wanted to see her, so be it, but I was to stay out of all aspects of her life except when we visited.

Two days after I was shot her mother called me in the hospital and, in a tone that appeared genuine, asked, “Do you have someone to look after you?” I said I did and she said, “Good,” and hung up. A few minutes later she called back, said, “Too bad you didn’t die,” and hung up.

If you are wondering where this woman’s fury comes from, here’s the answer. I was the one who ended our relationship. You can comfortably assume that what you’ve heard here about her capacity for brutality was one of the major reasons I did end the relationship.

Anyway, if I thought the shooting was going to soften her attitude I was mistaken. I called from the hospital and asked to speak to Jennifer who was seven at the time. Her mother said, “No.”

I said, “Listen, I don’t even know if I’m going to live, things aren’t so good. I’m not about to tell her what’s going on, I just want to hear her voice.”

“Tough,” she said, and hung up.

And so here I am, home from the hospital a day or two, head shaved and adorned with a huge scar from the brain surgery and her mother is saying, ““If you tell her you were shot I won’t let you see her anymore.”

“How do you suggest I explain the shaved head and giant scar?”

“I don’t give a shit how you explain it. Tell her you were shot and you don’t see her.”

Now my daughter is breathtakingly smart. She was also a remarkably perceptive seven-year-old. When she saw my head and asked what happened I told her I had a bad fall and had to undergo surgery but was okay now. She notice the pulsing in front of my left temple and asked about it. “Well, there’s a small hole in the skull”

“Does it hurt?”

“No sweetie.”

She nodded. Over the next few weeks Jennifer would hear me talking with crime victims on the phone. At the time I was working with others to form the New York City Chapter of Victims for Victims, a non-profit group founded in 1982 by a remarkable woman and actress named Theresa Saldana.

One day Jennifer and I are sitting in the living room. I’m sitting on the couch, she’s sitting in a chair next to the couch. She says, “Daddy, can I ask you something?”

“Sure”

“How did you say you got hurt?”

“I fell.”

“Where?”

“On the sidewalk.”

She pauses, thinking. And then, slowly slicing her hand through the air, her palm parallel to the floor, she asks, “Well, if the sidewalk’s flat, how did it make the hole in your skull?”

Here she comes, I thought, so proud of her, feeling so much love for my daughter that if love were light I would’ve lit up the world. “It didn’t,” I answered.

“Then what did?”

I realize I need to provide a clue. “What people do you hearing my talking to a lot these days?”

"Crime victims.”

“Right.”

A pause. Then, slowly, “You’re a crime victim?”

I nod. “Yes, sweetie.”

She leans forward now and says, “Someone hurt you,” and it’s not a question.

“Yes.”

“They beat you up.”

“No.”

“Then how?”

Another clue. “What do bad guys use to hurt people?”

“Someone stabbed you?”

“No.”

“Someone shot you?”

I say, “Yes, sweetie,” and this gloriously loving seven-year-old girl flies into my arms, both of us crying, holding each other tight. My beautiful daughter had tracked down the truth of what had happened to her father and now we held each other closely. I knew then and know now that moments like that don’t get any healthier and healing.

I called her mother, explained what happened, and pleaded with her to not do anything rash. To my relief, she didn’t.

 

How Do They Sleep at Night?

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One wonders how some who work for the New York State Department of Health manage to sleep at night. Not all who work for the DOH mind you, but some.

There are reports, reliable ones folks, from around the state that make it clear there is a sustained effort underway to cut Medicaid spending, the carnage inflicted on the lives of brain injury survivors be damned. As this blog has reported, reliable sources say the DOH has directed that those individuals who work for waiver providers, companies and individuals in the state who help brain injury survivors live in the community and grow their independence, are to side against the survivors they work with and with the DOH if those survivors ask for a Medicaid Fair Hearing to challenge some DOH ruling that, of late, means they are either disenrolled from the waiver or are having their services cut.

One wonders how Maribeth Gnozzio, whose never met an email or phone call she can’t ignore, sleeps. She’s ignored queries from this writer (and brain injury survivor) whether those queries were about my own case or about the treatment of brain injury survivors across the state. When I had what I’d thought was a pre-conference before my Fair Hearing, scheduled for December 1 next week at 1 p.m., she didn’t bother coming even though the two RRDSs (actually one is an assistant RRDS but what the hell…) said they couldn’t change any decision – the DOH had your request for a Life Alert and white noise machines not us – because I, not they, had failed to ask them to invite someone from the DOH. I explained to them that since they are DOH contract employees they were the ones who should have invited a DOH person (I’m using the word person loosely here).

Incidentally, I asked the two RRDSs (Maria Relyea and Rob Korotitich), who claimed they didn’t realize the pre-conference to the Fair Hearing was the pre-conference to the Fair Hearing (I know, I know…I wouldn’t believe it either except I was there and they really claimed they didn’t know..Scout’s honor, that’s what they said) if we could maybe have another pre-conference and this time would they bring someone from the DOH. They dragged there feet on this and then offered a pre-conference date of November 29th before we all agreed that was silly since the Fair Hearing was December 1 and they – meaning the DOH – wouldn’t have time to review any new material I provided. I asked them if they had planned to bring someone from the DOH on the 29th and they said no, the DOH had given them permission to represent the DOH, which is exactly what they are contracted to do in the first place.

As for how people like Gnozzio and her ilk sleep, I imagine they sleep well. I say this because only people with a conscience would find sleep difficult because they treated people with disabilities like they are non-entities. But given that Gnozzio and those other DOH folks copied on the emails sent to her don’t respond, they seem to have no conscience.

Oh, I’ve asked that Gnozzio, who, according to the two RRDSs just mentioned,  was a significant player in the decision to deny my assistive technology request, be present at the Fair Hearing.

If I were a betting man, I’d feel quite comfy betting she’ll be a no show. She and those like her will either be hard at work denying people like me our rights, or they’ll be sleeping.

Afterward

Lest anyone think I’ve been unduly harsh here, consider the following two examples followed by an observation:

  • The DOH is making a concerted effort to make it as difficult as possible for people living with brain injuries to be successful in a Fair Hearings. It’s not simply that they are either flat out telling waiver staff, who more often than not pour their hearts and souls into their work, that they can’t support the brain injury survivors they work with at the Fair Hearing, they are leaving brain injury survivors, many of whom deal with memory deficits, communication challenges, organizational challenges and more, to fend for themselves in the hearing.
  • I’ve had reports from one area of the state that RRDSs have told survivors that if they continue the services the DOH wants to cut from their lives until the Fair Hearing (something they have a right to do) and then lose the Fair Hearing, they will have to pay back every penny themselves. This threat leveled at people on fixed incomes that are so low they are anything but fixed, unless of course you mean the fix is in, is vicious and ruthless. This threat so terrifies survivors they opt out of Fair Hearings. This threat is nothing more than an intimidation tactic on the part of DOH.
  • The Observation: Someone I deeply respect recently reminded me that RRDSs are often the signatures on the page that bears the bad news for the brain injury survivor, not the author of its content. True. However, the person who is the RRDS has accepted a job in which he or she is willing to go along with denial of rights and intimidation tactics  and so as far as I’m concerned, they’re just as responsible as whoever authored the page. Hell, if simply being a side-line player in a work environment where survivors were being denied their rights was morally acceptable, I’d still be working with the Belvedere Brain Injury Program, and I’m not. I can’t speak for others or tell others how to manage their moral compass, but there is no job position or amount of money in the world that has the power to make me take part, directly or indirectly, in denying people their rights.

The TBI Waiver: It’s All About Money….Duh

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Most of us grew up hearing the phrase actions speak louder than words. It’s true. But then I suspect you knew that already.

And so it is with the New York State Traumatic Brain Injury Waiver. Actions speak louder than words. And the actions say the concern on the part of state’s DOH is money, not the nearly 3,000 human beings living with brain injuries currently on the waiver.

If you talk to people in New York State’s Department of Health they will tell you how they care about brain injury survivors and how the waiver is the best in the country (if this latter point is true God help those on the other waivers). During a recent meeting Carla Williams praised the quality of the waiver with a kind of manic vehemence. Ms. Williams is the DOH’s deputy director in the Office of Long Term Care. Ms. Williams was also the one who voiced the smile-producing and not particularly prescient complaint that the content of this blog is my interpretation of things (Note: I am proud to say I successfully resisted the temptation to ask her exactly whose interpretation she’d have me use).

Very few people and very few systems, if any, are all one thing. The DOH officials who formerly oversaw the waiver, Patricia Gumson and Bruce Rosen, the former retired, the latter reassigned, certainly had their issues. All indications are they both knew Timothy J. Feeney’s educational credentials were bogus and they were, upon reflection, rather cliquish in the way they sailed the ship, insular too. And they are and deserve to be held accountable for all this. However, in all my interactions with the two over the years both gave a genuine damn about the brain injury survivors on the waiver. And, if you asked them questions, they answered you. Not like the current crop who hide behind the walls of silence and cower under the cloak of non-responsiveness.

As for the assertion its about money not about people just watch the bouncing ball, the way brain injury survivors are actually treated, you tell me. Survivors across the state are having their services cut and in far too many cases are being disenrolled from the waiver altogether.

As for the DOH’s genuine commitment to fairness during Medicaid Fair Hearings, a venue in which a participant can challenge a DOH ruling, consider this. Reliable sources say DOH official Maribeth Gnozzio, she oversees the RRDSs across the state, instructed said RRDSs in a monthly conference call that those working for waiver providers are to side with the DOH  and against the position of the brain injury survivor at the Fair Hearing. Email requests to Ms. Gnozzio and her colleagues asking for confirmation of this one way or another have, no surprise, gone unanswered.

Think about this, the largest survivor-led coalition of brain injury survivors in the state asks for confirmation and gets ignored. Remember, actions speak louder than words. If they gave a damn about the survivors would they ignore queries from a survivor led coalition? You tell me.

And then, think about the directive. Imagine a brain injury survivor who asks for a fair hearing and deals with expressive aphasia. Expressive aphasia hinders the person’s ability to speak their thoughts (which are as sharp and cohesive as ever) as fluidly as they did before the injury. Talk about stacking the deck against the person with the disability! And, if the survivor loses and the state wins, the state spends less money and the hell with the survivor.

As if all this weren’t enough, consider the structure of the waiver’s complaint line. To file a complaint you must call the Brain Injury Association of NY State. I can tell you from firsthand knowledge you will be treated with kindness, compassion and respect by BIANYS staff. But BIANYS is merely the conduit for the complaint. They write it up and forward it to the DOH. The complaint line protocol (provided at the end of this essay in full) not only fails to provide a timeline in which the DOH must respond to the complainant, it doesn’t require the DOH to respond to the complainant at all!

This, of course, violates the participant’s rights section of the DOH’s own TBI Waiver Manual which reads, in part, that a participant will be “treated as an individual with consideration and respect” and violates the  manual again when it says participants must have their “complaints responded to and be informed of the resolution”.

Like I said, actions speak louder than words.

I filed a handful of complaints this year starting in March. I finally received the following letter from the DOH. It is dated November 5, 2010. It reads as follows.

Dear Mr. Kahrmann:

Please be advised that representatives of the Department of Health (DOH) have completed their investigation into the allegations you presented in your complaints to the Brain Injury Association of New York State (BIANYS) Complaint Line. A review of a series of emails and complaints going back to March 15, 2010 and most recently as August 30,2010 was conducted and a full investigation completed.

Please be assured that these issues have been appropriately addressed with all involved parties and no further investigation on the part of DOH is warranted at this time. DOH considers the investigation to be closed.

Sincerely,

Lydia Kosinski

Assistant Director Office of Long Term Care

cc: Mary Ann Anglin, Director

Like I said in the prior blog post. The DOH achieved the remarkable feat of putting words on a page and still the page is blank. Setting aside it took them eight months to respond, the response provides no clarity insofar as the investigation’s findings are concerned, none whatsoever. Would they say there response, as their manual mandates, treated this participant “with consideration and respect” ?

I am not and the Kahrmann Advocacy Coalition is not the only party that gets lip service from the DOH. The state’s Providers Alliance comprised of about forty waiver providers has done yeoman’s work putting together a package of suggestions and, like KAC, has again and again signaled a willingness to sit down and work with all parties.

We all would still sit down and work with the DOH anytime. But there needs to be sincerity on all sides, not just lip service and spin. A place to start might be the TBI Manual. Sources across the state say the DOH is rewriting the TBI Waiver Manual (again it refuses to confirm or deny this). If so, then they would be wise to ask for the input of all parties: brain injury survivors, families, healthcare professionals, the Provider’s Alliance, KAC, BIANYS, the Brain Injury Coalition of Central NY, the CQC and more.

To invite input from all parties would send a clear signal that the DOH is truly working for the benefit of brain injury survivors. To remain insular and wall parties out simply underscores what is becoming increasingly clear to all, it’s only about money. If they really cared, they’d be including all the aforementioned in the manual-writing process because we are the ones who know firsthand the challenges faced by those of us who live life with a brain injury – like me.

As promised:

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.

On a Mountain

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I am moved.

No longer a resident of Berne New York, a home I was in for nine years and one I will always be grateful for, I am now moved to a house on a mountain in New York’s Delaware County. A dirt road passes in front and the house sits on 12 acres of largely forested land. There is a beautiful pond in the backyard. I met Carlos the mailman, a delightful person. He tells me there is another writer and two painters on this stretch. Is it any wonder? The pull to the writing table (and I imagine for a painter, the easel) is magnetic here.

There is still an enormous amount of unpacking to do. I have nearly 70 boxes filled with books and then of course, there are the many boxes packed at the last minute, that minute when it finally dawns on you that everything actually does go together and are thrown into the nearest box thusly.

The dogs love it here. McKenzie and Charley run free when I’m with them but Milo, loyal first to his beagle nose, remains on a long lead.

I got my library card the first full day I was here. My health has been a bit problematic but seems to be on the mend, its battering in large part, I think (hope!) was in response to the stress and anxiety of having to move.

And then there is the advocacy to get back to. I finally received a letter from New York’s Department of Health that claims to be its response to my complaints. The DOH is one of those remarkable entities that can put words on a page and still leave it blank. More on this soon.

In the meantime I continue to settle in. I am deep into a lovely biography of John Dos Passos by Townsend Ludington. There is a wood stove here and reading by the fire is about as glorious as it gets.

Anyway, I am moved, and the next chapter begins.

 

No Brain Injury Training for NY RRDSs

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The very people hired by the New York State Department of Health to oversee the implementation of the state’s traumatic brain injury waiver receive no mandatory training in brain injury or the brain. 

Two Regional Resource Specialists from the Capitol Region, Maria Relyea and Robert Korotich, acknowledged in a meeting this week that the Department of Health requires no mandatory training in brain injury for RRDSs statewide. 

Given the fact it is the RRDSs who issue the decisions that brain injury survivors will have the services cut or denied altogether, the fact those issuing these decisions are not required to undergo any training about the brain is inexcusable. It’s tantamount to hiring a couple of folks off the street to have them oversee the care of those who’ve sustain spinal cord injuries or are dealing with Parkinson’s  when, with few exceptions, they don’t know anything about SCIs or Parkinson’s.

When you couple this with the fact the state’s Department of Health knowingly signed a contract that will funnel hundreds of thousand of dollars in the direction of Timothy J. Feeney, a PhD wannabe who continues to misrepresent his educational credentials and who has had, according to his own resume, no real training in brain injury, it is hard to reach any conclusion other than the DOH and those of Feeney’s ilk don’t give a damn about those of us who live with brain injuries.

The other conclusion that can be, I think, safely drawn, is the DOH feels it is appropriate to hire people to oversee  the TBI Waiver and directly influence the services waiver participants get or don’t get who are simply not qualified to do so. This is not only unfair, immoral and damaging to brain injury survivors, it is unfair, immoral and damaging to the many companies and individuals around the state who provide services to brain injury survivors. After all, they are expected to following the DOH/RRDS marching orders when the latter tandem knows less about brain injury than the providers do. 

The meeting this week referenced above was the conference I’d asked for that is allowed to take place before a Fair Hearing. My fair hearing is scheduled for December 1. Although I’d written to these RRDSs asking for the conference provided for before a fair hearing, both claimed they didn’t realize this weeks conference was the conference before the fair hearing, claiming that they thought I just wanted to talk about the DOH’s denial of my assistive technology requests.

And just when you thought things could get any slipperier.

Oh, almost forgot. I did inform both Ms. Relyea and Mr. Korotich that I want to have the pre-fair hearing conference with them before the fair hearing. I followed that up with and email confirming this.