Category Archives: DOH

NY State DOH Evasive with State’s Brain Injury Council–Part I

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The New York State Department of Health waited until the day before  the TBISCC (Traumatic Brain Injury Services Coordinating Council) April 14 meeting to inform council chair Michael Kaplen that  no DOH officials would be available to  explain why service coordinators are being told – by the DOH – that they must side against their clients at Medicaid Fair Hearings.  Never mind that the issue had been on the council’s public agenda and never mind that the council had requested presentations on the fair hearing issue at their last meeting.

““I was informed yesterday by the department that although we’d requested presentations at the last meeting as part of today’s program and although those items were in our agenda and in fact was in the published agenda by the health department originally, no one from the health department was available,”  Kaplen said.

Service Coordinators are the case managers for people with brain injuries who are on the TBI Medicaid Waiver. Some brain injury survivors live with communication or processing deficits as well as memory deficits; sending them into a Medicaid Fair Hearing without the support of their service coordinator is like sending a lamb to slaughter, and the DOH knows it.

According to the DOH’s own website, “The TBISCC is charged with recommending to the 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.”

The Unwritten Directive

In a telephone conference last year DOH official Maribeth Gnozzio issued a directive saying service coordinators were to side with the DOH if they appeared at Medicaid Fair Hearings. The DOH has no written policy or regulation in place and DOH officials have been careful not to put the directive in writing. Sources say they DOH claims says because service coordinators work for providers who are approved to provide waiver services by the DOH, there is a conflict of interest if they side with the participant. Moreover, because service coordinators get paid for their work, advocating for a waiver participants is self-serving. Both positions have no merit. First of all, the very nature of being a service coordinator requires  advocating for your client. The notion that getting paid for their work is a conflict of interest would be laughable were it not so destructive. Were that the case, doctors, physical therapists, speech therapists, lawyers, psychologists and psychiatrists better not recommend treatment either because they’re licensed by the state too and get paid for their work.

Although Kaplen said the service coordinator “is the individual who possesses the most relevant facts about the individual who is contesting the Medicaid services and who is in the best position to provide at times helpful information to that person at the (Medicaid Fair)  hearing” he offered a startling and rather  Palinesque form of reasoning in support of the DOH position: “You have on the other side of the fence the conflict in regard to whether or not it’s appropriate for that individual (meaning the service coordinator) to be an advocate for that individual (mean the waiver participant) because  they are technically within the same department where the contest is taking place. I understand that conflict.” If he means a service coordinator is a member of the DOH itself that’s going to come as one heckuva surprise to service coordinators around the state, not to mention their employers, who are not the DOH.

To his credit however, Kaplen said, “At  a minimum the service coordinator must be permitted to present factual information at this hearing that the individual can’t possibly present on their own. That this individual needs to rely upon to effectively make their own case.”

Anglin responded by saying, “I appreciate that input. Maybe by the next (council) meeting (in June) we’ll have that guidance out there and we’ll be discussing that guidance.”

Kaplen then asked, “Is this going to be in the form of an official rule allowing for a period of public comment?”

Anglin said, “No. That would be a regulatory change and we’re not proposing to change any regulations. Basically it’s am interpretive guidance on what the current regulations are.”

In many areas of the state, including, but not limited to Long Island and Western New York, waiver providers have been told by the DOH that they cannot support brain injury survivors in fair hearings, this coming at a time when the DOH has ramped up efforts to either discharge waiver participants or cut back on their services. By the time next June rolls around, who knows how many more lives will be damaged by the DOH directive.

During the public comment portion of the meeting, with DOH official Maribeth Gnozzio present,  this writer said the following:

A Response and a Moment of Silence

“Speaking on behalf of the nearly 1,000 members of the Kahrmann Advocacy Coalition, this  has been a hot button issue for quite some time. We filed, I filed a FOIL request with the DOH asking for any regulations, policies, memos, anything in writing, anything, related to their policies on fair hearings. What we received and all we received was a slender binder about how to train an administrative law judge. It’s a curious thing to me because earlier on (during the meeting) Mary Ann Anglin was talking about what was going on (with the drafting of the guidance referenced above) would not require public comment because it was an interpretative guidance of a regulation. Well, if it’s an interpretive guidance of a regulation that would indicate there’s a regulation in existence that is related to Medicaid fair hearings but the (DOH’s) FOIL response only got a binder on how to train an administrative law judge.

It is important that you as council know what we as coalition are hearing. We know that there was a phone conference with Ms. Gnozzio and RRDCs (Regional Resource Development Centers) throughout the state in which the RRDCs were instructed, told, that service coordinators are not permitted to advocate on behalf of participants in fair hearings. Several emails went into Ms. Gnozzio and she responds to nothing nor does she respond to phone calls.

What’s curious to me is when the department is talking about writing a directive, coming up with a policy to address this, there was already a verbal directive. We have members from around the state, they’ve been told by Ms. Gnozzio through the RRDCs that they can’t do this.”

At this point Mr Kaplen asked that I not make this personal to which I said, “It’s not personal. It’s a statement of fact. It seems highly arbitrary and capricious that these directives were given out… We, at this point, experience this as a willful effort to get as many people off the waiver as they possibly can.”

Council members and DOH officials responded with absolute silence. Silence from members of an evasive state  agency that is supposed to care about individuals with brain injuries and silence from a council that is charged with advising the DOH on what the DOH can do  “to meet the needs of persons with traumatic brain injury and their families.”

 

Stay tuned for Part II

 

NY TBI Waiver: Not Always Health or Care

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I’ve been living in a new county in New York for four months now and I am still waiting for the TBI Waiver’s RRDC (Regional Resource Development Center), the contract employee of the state’s Department of Health that represents the DOH and oversees those who provide waiver services and waiver service recipients, like myself, in a particular region, to approve my service plan.

Not a surprise, though it should be.

Now, to say the the state’s DOH has been anything but impressive in it’s management of the waiver of late is an understatement. Let’s add another fact to the mix. The RRDC in my area is STIC,  the Southern Tier Independence Center in Binghamton.  Have you read about them before in this blog? Of course you have. They’re the ones who hired Timothy J. Feeney of fictitious college degree fame to play a major role in STIC’s new contract for the Neurobehavioral Project linked to, wait for it, the TBI Waiver.  When STIC’s executive director, Maria Dibble, was notified that Feeney’s claim to have a valid masters and doctorate was bogus, it apparently didn’t matter.

Is it any wonder there is some inexplicable delay in signing my service plan? I am waiting for a discharge from the waiver notice any day now claiming that somehow the brain injury I live with has, what, gotten better? In truth, it debilitating impact on my life has increased dramatically. But I don’t expect that matters to some either.

As a side note, or perhaps not so side note, it is also worth noting that I’ve yet to receive a decision from my Fair Hearing held on December 1, 2010, a Fair Hearing in which we sought to reverse the DOH’s denial of my request for a life alert and white noise machines given the increase in sound sensitivity I live with. And hey, this month is an anniversary of sorts, given that it is now one year since we first asked for them.

Like I said, the TBI Waiver is not always healthcare because sometimes it lacks commitment to health and sure as hell lacks care.

Next Book: Brain Injury

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Since I suffered my brain injury in 1984 when I was shot and since I began working in the field of brain injury in 1995 I’ve witnessed the presence of the heartfelt commitment of the extraordinary among us as well as the presence of the greedy, self-serving, narcissistic and dictatorial.  I’ve written pages of notes about my experience and with the end of the memoir now in site, one of my next writing projects will be a tell-the-truth book about my experience in the world of brain injury.

Some will be pleased, some won’t. Some will be surprised, some won’t.  Some will be happy, some will be angry. Some will agree, some will disagree. How do I feel about all this? I don’t much care. My responsibility is to be honest and tell the truth to the best of my ability.

One of the things I will write about is what one might call the non-profit myth. The notion that if an agency, company or advocacy group is non-profit it means it really cares. Not so. To be sure, there indeed are terrific non-profits  like the Rochester-based CDR (Center for Disability Rights) headed up by Bruce Darling. CDR is all one could possibly hope for in a non-profit as both a service provider and  advocacy organization.

However, I’ve seen individuals in leadership positions in non-profit settings that are all about themselves. They  have arrived at the rather stupefying notion that the world revolves around them. They lay claim to the advocacy mantle when in truth they offer only lip service and consider their environments to be little more than petri dishes in which they can grow the bacteria necessary to further their self-aggrandizement. As a result, when it comes time to leap into the advocacy trenches and have at it, they are nowhere to be seen. Brain injury survivors and their loved ones along with quite a few healthcare providers know who stepped up to the plate and who didn’t when the New York State Department of Health decided to bring Timothy J. Feeney of bogus-college-degrees fame back into the fold. Brain injury survivors and their loved ones along with quite a few healthcare providers know who spoke up and who remained silent when the state’s DOH began to tell waiver providers they cannot support brain injury survivors at Medicaid Fair Hearings.

No organization of any kind, for-profit or non-profit, ought to be about or solely reliant on only one person or a handful of people.

I will also write about the for-profit myth, the myth that says anything that is for-profit is greed based. While this is often true, there are times it’s not. Until recently, Cortland, New York’s CCRP (Cortland Community Re-Entry Program), a for-profit that operated under the oftentimes problematic umbrella of Healthcare Associates, was one of the best if not the best Traumatic Brain Injury Waiver program in the entire state. The program crumbled when, after the untimely and tragic death of the head of Healthcare Associates, Anthony Salerno,  the running of the organization fell into disarray and CCRP fell apart, but not because it was a for-profit.

I may well write more about this upcoming writing project, but this is enough for now. Stay tuned.

 

It’s the Ethnic Cleansing, Stupid: Part II

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Max unfolds his Daily News for the umpteenth time and says, “They’re cutting all the subsidies.”

“Yankees lost again,”  Mort says, seeing the sports headline.

Martha looks at Mort, then Max, says, “They don’t care my brother. They’re denying services and cutting subsidies all over the place.”

Young woman twirling her coffee cup on the table top says, “This one dude on the waiver had to move, landlord needed the house for family, something like that, and because he stayed with a friend for a few weeks till he found his next place, they fucked him out of his rent and utility subsidies.”

Dolly says, “Where’s all the money going?”

Max folds his Daily News and slips it under his right arm, presses it tight against his chest. “The rent and utility subsidy is state money. Some of it’s going to Feeney.”

“The messianic little shit,” Martha says. “He’s still bullshittin’ planet earth about his college degrees, D-O-H doesn’t give a shit.”

“Brain Injury Association doesn’t either. You didn’t hear a peep out of them when his bullshit degrees became public,” Max says. “But that ain’t even the point. Think about this. They all march around saying how much they give a shit about us, but what happens. They’re throwin’ people off the waiver left and right, sending them into the streets with no housing help claiming they have no money, but they sign a contract  that’s throw’n more’n a quarter million state money to that asshole Feeney. You imagine how many folks could get housing help with that money?”

Dolly, tearing up again, says, “The fix is in.”

It’s About the Ethnic Cleansing, Stupid

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“What are they doing to us?” one young woman asked, her one functioning hand gently twirling a cup of coffee on the worn Formica table top.

“Anything they want,” came the reply, this from a short narrow man with kind wide-set blue eyes, a baseball cap perched on his head.

“It’s like we don’t exist,” the young woman returned, lifting and finishing the last of her coffee. “I was in college before my stroke. Twenty-four years old and a stroke. Go figure. Now look at me. Fat from meds, in a wheelchair, and now I got people saying maybe I shouldn’t get the support I need cause I don’t need it.”

Max, sitting quietly listening, unfolded and refolded his Daily News. For reasons known solely to Max, there was comfort in the act of folding and refolding the day’s Daily News. He had no interest in reading it. Never did. It was simply that the act brought comfort. Why, he was not entirely sure. And in the nuts and bolts of it, he didn’t care why. He was just glad it made him feel better. Looking up at his friends, all, like, him, survivors of brain injury, he said, “The fix is in.”

Martha, an older woman with dark chocolate skin, sharp clear brown eyes, shifted the position of her wheelchair, said, “Max is right the fix is in.”

Dolly’s eyes wet up. “What fix? What’s in?” She began to breathe hard. The young woman reached out and touched her shoulder. “Easy, Dolly, it’s okay.” They all knew Dolly had frontal lobe damage, after all when a drunk driver loses control of his car and runs you down, the front of your brain is bound to take a pretty hard whack. Sure enough. And they all knew that Dolly got upset race horse fast because her frontal lobe couldn’t modulate her emotions like it did in the past. It wasn’t like the damage drove all her emotions like this. Mainly fear, sadness and humor. Sometimes Dolly got to laughing so hard at something she couldn’t stop, and she had one of those infectious laughs so attempts to slow her laughter were, more often than not, overtaken by the inexplicable urge to join in and soon you had a table full of people laughing and that’s never a bad thing.

“It’s okay, Dolly,” Max said. “What I mean is it ain’t about helping us be safe or in the community, its about either they can make money off us, some folks are like that anyway, or, like now, when the government wants to save money, they toss us back into the sea and don’t give a shit if we swim or not.”

“My Daddy taught me to swim when I was three,” Dolly said, her wet red face now lit up with a smile.

“See,” Martha said, “you’re better off than you thought.”

“So what are they doing to us,” the young woman said, returning to the table with a refreshed cup of coffee.

“Looking for any excuse to cut our services or throw us off the waiver in the first place,” Max said. “It’s pretty much a version of ethnic cleansing. I read once that ethnic cleansing is "the planned deliberate removal from a specific territory, persons of a particular ethnic group, by force or intimidation, in order to render that area ethnically homogenous." Well, what do you call what’s happening. The ethnic group is us, we’re be tossed off services or denied services altogether, the Department of Health does whatever the fuck it wants, and what’s the result, we’re gone and only the non brain injured are left. Like I said, the fix is in.”

Martha nodded. “You here about that guy upstate. They denied him the waiver. My sister knows him, Freddie I think his first name is. Fell of a building when the scaffold broke, fell two stories.”

“Did he die?” asked Mort, always inclined to drift in and out of conversations, rarely getting the whole gist.

“Yeah, Mort, he died,” cracked Max. “And still he ain’t hurt bad enough for them to help him.”

“Fucked up,” said Mort, smiling, not at all minding that he’d missed the point, glad to be with his friends who loved him and he them.

“They said he didn’t have a brain injury,” Martha explained. “The RRDS said he had to get a neuropsych. Never mind his neurologist and neurosurgeon gave all kinds of records proving he’s brain injured.”

“What he do?” the young woman asked.

“Got the neuropsych. Neuropsych said yeah he’s brain injured and yeah he needs the waiver and the RRDS said not good enough and now they guy’s shit out of luck.”

“Like I said, the fix is in.”

“So what happens to us?”

“We hope we don’t get caught up in this ethnic cleansing.”