Category Archives: tbiscc

NY State DOH Communicates but…

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If material presented by the New York State Department of Health  is to be believed, no DOH employee has ever mentioned Medicaid Fair Hearings in writing and the DOH has absolutely no policies and procedures when it comes to Medicaid Fair Hearings, not even one.

It is hard to imagine that the absence of any Medicaid Fair Hearing policies and procedures and the absence of any mention of them in writing by anyone in the DOH is anything but a willful act on the part of the DOH.

Some background. In December of last year this writer filed a FOIL (Freedom of Information Law)  request with the DOH seeking, and I quote:

– Any and all policies and procedures and any and all emails or other forms of written or recorded communications that are related to Medicaid Fair Hearings.

– Any and all policies and procedures and any and all emails or other forms of written or recorded communications that are related to the state’s traumatic brain injury waiver, the RRDCs ( Regional Resource Development Centers) and RRDSs (Regional resource Development Specialists) and assistant RRDSs and their role in Medicaid Fair Hearings

– Any and all policies and procedures and any and all emails or other forms of written or recorded communication that are related to directives from DOH (and or contract employees of DOH) that relate to TBI Waiver providers and their role in Medicaid Fair Hearings

– Any and all information that relates to DOH Policies and Procedures that apply to Medicaid Fair Hearings

In response to this request I received only a training binder for fair hearing officers, that’s it.

A case in point: DOH employee Maribeth Gnozzio has a seemingly well-earned reputation for, with rare exception, not returning phone calls or emails. Nevertheless, she communicates rather frequently with the the Traumatic Brain Injury Waiver’s RRDCs  she is charged with overseeing across the state. The RRDCs oversee waiver providers and participants in different regions.

However, it seems that despite sending in the neighborhood of 3,658 emails to RRDCs in 2010, she too never mentions Medicaid Fair Hearings once. A remarkable feat indeed since several sources say it was Gnozzio who told RRDCs during a phone conferences last year that waiver providers are not to appear in support of waiver participants in Medicaid Fair Hearings, a nasty Machiavellian directive to say the least and a directive that can only be designed to undercut a waiver participant’s chances in a fair hearing. The results have no doubt  been brutal for more than one person living with a brain injury since it no coincidence that this rather sadistic DOH directive was issued at a time when there seems to be a wide-ranging effort to discharge people from the waiver or notify them their services are being cut. To send some of us who live with brain injuries into a Medicaid Fair Hearing without our waiver case managers can be like asking someone to climb Mount Everest without oxygen, and the DOH knows it.

Here is a regional breakdown of the approximate number of emails sent by Gnozzio to RRDCs in 2010:

Capital District – 226

Buffalo – 236

Long Island – 886

Lower Hudson Valley – 506

New York City – 704

Adirondacks – 244

Rochester – 140

Binghamton – 260

Syracuse – 130

Sent to all RRDCs – 326

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.

 

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.

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.”

The TBI Waiver: Seeking a Household Unified

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New York State’s Traumatic Brain Injury Waiver came into existence in 1995. Essentially it is an admirable Medicaid program that offers a set of services that help people with brain injuries remain in the community and, not incidentally, costs far less money than keeping people in nursing homes.

Recently I am hearing some deeply disturbing  things, including, but not at all limited to, the following:

    • Survivors of brain injury are being told their services will need to be cut by contract employees of the New York State Department of Health who are not experts in the field of neurology and therefore would appear to be making decisions they do not appear qualified to make.
    • There is a service offered by the waiver called Independent Living Skills Training. According to the DOH’s waiver manual ILST “services may include assessment, training, and supervision of, or assistance to, an individual with issues related to self-care, medication management, task completion, communication skills, interpersonal skills, socialization, sensory/motor skills, mobility, community transportation skills, reduction/elimination of maladaptive behaviors, problem solving skills, money management, pre-vocational skills and skills to maintain a household.  ILST services are individually designed to improve the ability of the participant to live as independently as possible in the community. ILST may be provided in the participant’s home or in the community. This service is provided on an individual basis.”          However, I am hearing that survivors are having their ILST services cut against their will. Now I am sure that were one to look closely at those receiving ILST services there may very well be cases where services should be reduced, or stopped altogether. However, the problem, and it is a potentially dangerous one, is that the decisions to cut these services appear to again being made by people not qualified to make them.
    • There is another waiver service called CIC, Community Integration Counseling. CIC is essentially talk therapy designed to help a person living with a brain injury come to terms with living life with brain damage. Now I am hearing some survivors are being told to turn to the mental health community for their counseling. Again, dangerous. A brain injury is an injury, not an illness. Period.
    • I have also had some reports that some New York DOH contract employees are saying the waiver was never meant to be a permanent support for people with brain injuries. First of all, that is disingenuous, secondly, brain injuries do not entirely heal, and there are lifelong deficits some of us live with that will require support for us to remain in the community.

Now, I would be wrong to villainize the New York DOH as a whole. Like all government agencies that are under pressure to cut costs. All the more reason they deserve advocates standing with them against any and all forces that continue to put the quality of lives and the lives themselves at risk. Therefore all parties need to be at the table: the New York DOH, the Kahrmann Advocacy Coalition, the New York State Brain Injury Association and the Providers Alliance, a group of  40 or more waiver service providers.

Everyone involved in regulating and providing services as well as advocacy for people with brain injury should be at the table looking to remedy things. No one party, including the DOH, should be made or choose to go it alone.

Lincoln was right when he said, “A house divided against itself cannot stand.” A household unified can stand and then some.

 

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