Tag Archives: tbiscc

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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Feeney Facts Plain and Simple

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It is  amazing how stone cold facts sometimes get a bit foggy,  or so some would hope. So, I thought I’d lift the fog a bit.

Fact: Timothy J. Feeney continues to say he has a valid PhD and a valid Masters Degree when he doesn’t.

Fact: The Southern Tier Independence Center in Binghamton New York may well get the contract from the New York State Department of Health to be the Statewide Neurobehavioral Project for New York’s Traumatic Brain Injury Waiver.

Fact: All indications are Southern Tier has every intention of giving the work, once again because they did it before, to Feeney and his team. 

Fact: The New York State Department of Health and the Southern Tier Independence Center are fully aware of  Feeney’s bogus degrees and both parties have received communication from brain injury survivors, family members and, in some cases, providers, asking to be protected from having Feeney and his company in their lives. Some providers have said they will stop providing services if Feeney returns.

Fact: If the Southern Tier Independence Center gets the contract and gives work to Feeney and the state doesn’t step up and stop this from happening that means that the Southern Tier Independence Center and the NY State DOH are okay with a dishonest and unqualified individual impacting the lives of the 2700 or so brain injury survivors on the waiver, their families, and the dozens of honorable healthcare providers trying to provide waiver services.

Fact: If the last Fact were to happen, it would mean Southern Tier and the State are not putting the survivors, their families, and the providers first.  And, by the way, it would mean both parties are sticking  it to the taxpayers because it is taxpayer dollars that would foot the bill, and taxpayers deserve honesty too.

Fact: The Kahrmann Advocacy Coalition, whose membership will soon be larger than that of the prestigious Brain Injury Association of NY State, is paying close attention, which is fairly relevant since the coalition was founded by brain injury survivors and their loved ones, they very people all the aforementioned parties say they care about.

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Equal Rights Needs No Competition

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Groups promoting equal rights should never be in competition with each other. The fight for equal rights needs and deserves as many honest voices as it can get.

I am most directly involved with promoting the equal rights of people with brain injuries, with their right to live in the most integrated setting.

Fortunately in my state there are some solid voices involved in this fight. The Brain Injury Association of New York State is the leading advocacy organization in the state;  the Providers Alliance is comprised of companies and individuals who provide services so some who live with brain injuries are able to live in the community: the Kahrmann Consumer Advocacy Coalition is a statewide coalition founded by and run by survivors and their families;  the Brain Injury Coalition of Central New York is comprised of an extraordinary group of survivors, family members and health care professionals; the National Brain Injury Foundation in Utica brings hope and empowerment to survivors and their families; the Traumatic Brain Injury Services Coordinating Council (TBISCC) was formed by an act of the New York State Legislature to advise the Department of Health regarding service needs of persons who have sustained a traumatic brain injury, and the New York State Department of Health and the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities.

Given a recent productive meeting between the KCAC and Mark Kissinger, deputy commissioner for the New York Department of Health and his staff,  along with my knowledge and experience of those in all of the aforementioned groups, New York State is blessed to have them all and very much needs them all. There is no such thing as too many groups working for the right of all survivors of brain injury to live as independently as possible in the most integrating setting as possible.

The KCAC will be meeting with the Mr. Kissinger and his staff again in the next few months and has already reached out to the Brain Injury Association of NY and the Providers Alliance for a meeting. Moreover, we are already talking with both the NBIF and the BIC of Central New York. What is true about those in all the groups mentioned in this missive – including the DOH for those who may doubt it – is everyone’s heart certainly appears to be in the right place.

I hope and pray all of us are wedded to my favorite definition of humility – humility isn’t thinking less of yourself, it is thinking less about yourself  – and  join together, work together, and urge each other on. If any of us get caught up in the destructive winds of competition and ego, we hinder the very thing we are all really about – equal rights.

This is not the life path I was on when I was shot in the head 1984. I was writing, driving a New York City cab, and pondering a career as a paramedic. But the squeeze of a teenage finger changed all that. And so here I am, connected to some wonderful people and some wonderful groups throughout this state.

And so we keep on moving, one day a time, humble and humbled up, which is at it should be. Life happens to us whether we like it or not. It does not go on forever, so let us all join together and work  heart and soul to make the world a better place for all people. And that includes each other.

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