Tag Archives: TBI Waiver

The Problem With Secrets

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The problem with secrets is most people can’t keep them.

Despite the New York State Department of Health’s refusal to confirm the directive for this writer, employees in several RRDCs (Regional Resource Development Centers) around New York State confirm the DOH has directed that waiver provider staff are not permitted to  advocate or testify for their clients in a Medicaid Fair Hearing. In fact, if they attend the Fair hearing, they must support the DOH’s position and not their clients.

Several sources say this directive was shared with RRDCs during a conference call with DOH official Beth Gnozzio.

Sources say they have been given two reasons for this. One is based on the slippery-slope notion that since providers are approved by the state to provide services, they are under contract with the state and to disagree with the state would be a conflict of interest (I suddenly feel like I’m writing about the Soviet Union). The second reason would be funny were it not so sleazy: This reason says since providers are paid to provide services to their clients, supporting their clients request for continued services would be self-serving and again, a conflict of interest. 

It seems to me that this is one of those occasions where facts and reason have little effect, at least not on the decision making of the DOH. The notion that being approved by the state precludes providers from supporting their clients would, I suppose, mean that doctors, psychologists and social workers, all licensed by the state, would be precluded from supporting their clients and patients.

Using the fact providers are paid for their work as a reason to stop them from supporting their clients would, I again suppose, mean that a doctor recommending treatment for his or her patient should not support the patient when an insurance company seeks to deny treatment because the doctor is getting paid for his or her work.

It seems to me we are witnessing institutional corruption.

You can be sure of one thing, more people will talk, more facts will come out into the light of day and, when they do, they will find their way to the pages of this blog.

The DOH and others would be well advised to pay close attention to Launcelot’s words in Shakespeare’s Merchant of Venice when he said, “but at length the truth will out.”

And it will.

 

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.”

Now Is Not The Time

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It is safe to say I am not the poster boy for patience these days. Things I’d normally let roll off my shoulders are being snapped at.

There are a few stressors at the moment. I have to leave where I am living as a member of my landlord’s family needs the home. My landlords have, for these past nine years, proved themselves to be the greatest landlords in the world.  I am also on disability with a sprinkling of money here and there for writing along with the occasional speech; there is a reason there is no fancy car in the driveway. Truth is I wouldn’t want one anyway no matter the state of my revenue.

Thinking I was moving to Herkimer County New York we switched my NY TBI Waiver benefits there and now, given that the deal for the house we’d hope to buy looks to be dead in the water, I find myself without rent or utility subsidies and despite the fact I may be moving to a place close to my current home, I am dealing with a state Department of Health that will likely make it impossible to regains the subsidies. Those of us on the TBI Waiver are having their services sliced and diced and, in too many cases, entirely denied  by a DOH that essentially creates regulations on the fly and doesn’t even follow what few regulations they have set forth in the manual they wrote.

Moreover, because of the presumed move to another county, there are, for this month, no food stamps. So, a for man who has  been homeless before, hospitalized twice for hunger pains, the pressure is on. While intellectually I know I will not wind up homelessness, I think it fair and accurate to say that once you have experienced real homelessness in your life, its specter is always near. Along with this, my body, normally an ally, has paid the price. Nights are fairly packed with back spasms which strike sporadically throughout the day as well.

This too shall pass, as they say and I know that. I have been reading some good books, having, I am ashamed to say, started reading John Dos Passos for the first time this year (a staggeringly brave and brilliant writer).

Having said all this, now is not a good time for someone to give me any grief. Some years ago someone I was working with said, “You’re a tough guy you know.” I was mortified! To me tough guy meant bully and not only have I never been a bully I have always been the one who has looked to take on the bully. I took my mortification to my friend and sister in my heart, Judy.

“You got a minute?” I asked.

“Sure,” she said, sitting down, smiling.

“Am I a tough guy?”

“Tough guy?”

“Yeah. Tough guy. Like in bully.”

“You’re not a bully, no. But you are a tough guy.”

“What do you mean?” More mortification.

“You don’t take any shit from people.”

Now that I could live with. And it’s true, I don’t take any shit.

Especially now.

NY DOH Wounds Rights of Brain Injured

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Reliable sources say the New York State Department of Health has told TBI waiver staff that they must side with the DOH and against their clients when their clients appeal decisions made by the DOH in a Medicaid Fair Hearing.

A Fair Hearing affords people the chance to contest a DOH decision. As regular readers of this blog know, the DOH recently denied this writer’s request for white noise machines and a life alert.

Sources say the DOH Legal Department claims companies and individuals approved to provide waiver services are under contract with the state and therefore it would be a conflict of interest if they were to side with the brain injury survivors, the very people they are supposed to serve. Asked what options waiver staff have if they disagree with the DOH’s decision, sources say waiver staff can help survivors find community advocates to appear with them at the hearing.

The denial of my request came in the form of a letter from the Capitol Region’s Regional Resource Development Center (RRDC).

RRDCs are contract employees of the DOH who oversee those who provide and receive Traumatic Brain Injury Waiver services in their region. The TBI Waiver is an array of services that helps brain injury survivors live in the community. TBI Waiver Providers are companies and individuals who provide these services. Service Coordinators are providers who act as case managers and work with waiver participants in identifying  the services and developing the treatment plans that best serves waiver participants. Essentially, the Service Coordinator is the quarterback of the treatment team that works with and for the participant.

This legal directive was, according to sources, presented to RRDCs across the state in monthly conference calls facilitated by DOH employee Beth Gnozzio. Ms. Gnozzio has developed a reputation on several fronts for not responding to emails or phone calls.

The directive itself appears to violate the DOH’s TBI Waiver manual which reads, in part, that waiver participants must “Receive support and direction from the Service Coordinator to resolve (their) concerns and complaints about services and service providers” The directive’s rather apparent conflict with the manual does not stop there. The  TBI Waiver manual  says (bold is mine): “An individual has the right to seek a Medicaid Fair Hearing for many reasons including issues related to the …TBI waiver”. The manual also says brain injury survivors will “Have your service providers (to) help protect and promote your ability to exercise all your rights; identified in this document”, the document being the manual itself.

How on earth service providers, comprised of service coordinators and, for that matter, all waiver staff, can help protect and promote the survivors ability to exercise their rights, one of which is the right to a fair hearing, while at the same time they are being told they must stand against the survivors in a fair hearing is beyond me.