Tag Archives: New York State Department of Health

Memo to Survivors & Providers: Shine the Light!

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If I have learned one thing I have learned that the New York State Department of Health hates publicity. They hate it when their actions are brought into the light of day. And so, given their reluctance to change their clearly punitive behavior towards brain injury survivors, their loved ones and, not incidentally, those who provide services to same across the state, I am urging all of the aforementioned to openly share their stories. Don’t embellish and certainly don’t lie. Simply state the facts of the matter as you honestly know them. The facts speak for themselves.

In yesterday’s Fair Hearing it was crystal clear that the DOH, represented by RRDSs from the Capitol Region, were looking for any excuse to deny my request for white noise machines and a life alert (see preceding blog post). Not only was the tone of their stance, voiced primarily by RRDS Maria Relyea, venomous, it was rooted in a willingness to change the rules at a moment’s notice simply to wound the survivor, in this case me.

Across the state the DOH is looking to jettison people off the traumatic brain injury waiver or, if not that, cutting their services so drastically life becomes even harder for the survivors. I can tell you that living life with a brain injury is not so easy a task in the best of circumstances.

A DOH Trap for Providers

The DOH has also set what might be called a trap for providers. If they don’t tell the provider outright they can’t support their client at a Fair Hearing, they’ll tighten the purse strings by telling the provider if they do appear at the Fair Hearing on behalf of the participant they won’t get paid. A nasty form of manipulation. What’s the trap? Some providers are playing the you need to subpoena us to appear with the participant card. If they are subpoenaed they’re paid, and they should be. However, by playing hat card they walk full length into the DOH’s penchant for accusing providers of being in it for the money. So while the urge to play the subpoena card is understandable, strategically it is a blunder, albeit an understandable one.

Shine the Light

What providers and all others should do when encountering this behavior is  publicize it. Let local, state and national media know. Start a blog, start a web page, or post it on the web page you have. It’s okay to be afraid but don’t let it scare you.

Whatever your political walk of life, there can be no arguing that President Obama was right when he said, “Sunlight is the best disinfectant.”  And if there is anything the behavior of the DOH needs when it comes to the facts just mentioned, it’s a hefty dose of disinfectant.

Shine the light.

NY State DOH Sinks Lower

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I’m not the first to think someone couldn’t sink lower only to be proven wrong. In my Medicaid Fair Hearing today the New York State Department of Health, represented by RRDS’s Maria Relyea and Robert Korotitich, proved they will sink as low as it takes  to prevent a brain injury survivor from getting the support he or she needs, and they’ll mislead and change the rules as they go to serve their purpose.

Today was the Medicaid Fair Hearing I asked for because the DOH denied my request for a life alert and three white noise machines.

Let’s review. All parties agree that the subject of my getting white noise machines to help me manage a marked sensitivity to sound and a life alert was first raised in March 2010, nine months ago. By June of 2010 all documentation was in and we, my case manager and I, were told the letter from my therapist supporting my request was enough. Months pass with no news and then the DOH changes its mind and says the therapist letter is not enough, we need a letter from a medical doctor. A letter from a medical doctor supporting me was provided.

On October 4 – seven months after the request was first made and four months after all the paperwork was in – I received an email from Rob Korotitich saying all the documentation I needed to justify my request was in, they were approving it and sending it on to DOH for signature.

In late October I receive notice that DOH has denied both requests.

Then, on November 10, I have a pre-conference with Relyea, Korotitich and my service coordinator, a remarkable person named Jessica Pakatar from Catholic Charities. A pre-conference is a standard way for parties to meet and try and resolve differences which would negate the need for a Fair Hearing. In the middle of the conference Relyea and Korotitich announce they didn’t realize it was the pre-conference (despite their having confirmed they were attending the pre-conference in response to an email I’d sent them two days earlier on November 8). However, in this meeting they said if I fully explained my medical condition it may help get the life alert request approved and if I had more evidence of my sound sensitivity it might help on the white noise machines front.

And so we provided yet another, far more extensive letter from my doctor, one that detailed the brain injury, chronic asthma and a heart condition and mentioned the fact I live alone in a rural area. We provided letters from people who know me and have witnessed firsthand my struggle with sound sensitivity. We provided documentation from the Mayo Clinic and the Arizona Center for Advanced Medicine documenting the prevalence of sound sensitivity in brain injury survivors as well as documentation from a military site talking about the prevalence of sound sensitivity when there is the combination of brain injury and PTSD. Moreover, Kristin Weller from the Brain Injury Association of New York State was there and provided an overview of the prevalence of sound sensitivity in brain injury survivors.

All this was not enough to satisfy the DOH. Maria Relyea, who lost all my respect for her today,  said the life alert had to be tied directly to the brain injury and that the other medical conditions were not relevant because I’m on a brain injury waiver. I asked her why the DOH had waited until now, the Fair Hearing, to make this point and why hadn’t she made this point during the pre-conference? No answer.

She went on to say that even with all the new sound sensitivity evidence provided there still wasn’t enough justification for the sound machines. There should be an assessment made, she said (never mind they’ve been provided three assessments, one by my therapist and two by my doctor). Once again she was asked by me why they’d waited until now to bring this up?  Now they wanted some kind of assessment, the specifics of which Relyea could not identify, even when asked to by the judge.

Then, Relyea questioned the need for three white noise machines (which had been explained in the letter from my doctor as being needed for different areas of the house). We think that might be a duplication of services, she said, which no doubt got her the prize for achieving the most juvenile and asinine moment of the day. Bad math too. To follow up on the asinine reasoning trail, it would be tripling the services, not doubling. It’s three machines, Maria, not two.

Christine Waters, the attorney for New York State’s Commission on Quality of Care,  accurately pointed out that the DOH was just raising the bar every time we met their requests.

I’ll be notified of the Fair Hearing results by mail in a few weeks.

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 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.”