Tag Archives: TBI Waiver

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 TBI Waiver: It’s All About Money….Duh

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Most of us grew up hearing the phrase actions speak louder than words. It’s true. But then I suspect you knew that already.

And so it is with the New York State Traumatic Brain Injury Waiver. Actions speak louder than words. And the actions say the concern on the part of state’s DOH is money, not the nearly 3,000 human beings living with brain injuries currently on the waiver.

If you talk to people in New York State’s Department of Health they will tell you how they care about brain injury survivors and how the waiver is the best in the country (if this latter point is true God help those on the other waivers). During a recent meeting Carla Williams praised the quality of the waiver with a kind of manic vehemence. Ms. Williams is the DOH’s deputy director in the Office of Long Term Care. Ms. Williams was also the one who voiced the smile-producing and not particularly prescient complaint that the content of this blog is my interpretation of things (Note: I am proud to say I successfully resisted the temptation to ask her exactly whose interpretation she’d have me use).

Very few people and very few systems, if any, are all one thing. The DOH officials who formerly oversaw the waiver, Patricia Gumson and Bruce Rosen, the former retired, the latter reassigned, certainly had their issues. All indications are they both knew Timothy J. Feeney’s educational credentials were bogus and they were, upon reflection, rather cliquish in the way they sailed the ship, insular too. And they are and deserve to be held accountable for all this. However, in all my interactions with the two over the years both gave a genuine damn about the brain injury survivors on the waiver. And, if you asked them questions, they answered you. Not like the current crop who hide behind the walls of silence and cower under the cloak of non-responsiveness.

As for the assertion its about money not about people just watch the bouncing ball, the way brain injury survivors are actually treated, you tell me. Survivors across the state are having their services cut and in far too many cases are being disenrolled from the waiver altogether.

As for the DOH’s genuine commitment to fairness during Medicaid Fair Hearings, a venue in which a participant can challenge a DOH ruling, consider this. Reliable sources say DOH official Maribeth Gnozzio, she oversees the RRDSs across the state, instructed said RRDSs in a monthly conference call that those working for waiver providers are to side with the DOH  and against the position of the brain injury survivor at the Fair Hearing. Email requests to Ms. Gnozzio and her colleagues asking for confirmation of this one way or another have, no surprise, gone unanswered.

Think about this, the largest survivor-led coalition of brain injury survivors in the state asks for confirmation and gets ignored. Remember, actions speak louder than words. If they gave a damn about the survivors would they ignore queries from a survivor led coalition? You tell me.

And then, think about the directive. Imagine a brain injury survivor who asks for a fair hearing and deals with expressive aphasia. Expressive aphasia hinders the person’s ability to speak their thoughts (which are as sharp and cohesive as ever) as fluidly as they did before the injury. Talk about stacking the deck against the person with the disability! And, if the survivor loses and the state wins, the state spends less money and the hell with the survivor.

As if all this weren’t enough, consider the structure of the waiver’s complaint line. To file a complaint you must call the Brain Injury Association of NY State. I can tell you from firsthand knowledge you will be treated with kindness, compassion and respect by BIANYS staff. But BIANYS is merely the conduit for the complaint. They write it up and forward it to the DOH. The complaint line protocol (provided at the end of this essay in full) not only fails to provide a timeline in which the DOH must respond to the complainant, it doesn’t require the DOH to respond to the complainant at all!

This, of course, violates the participant’s rights section of the DOH’s own TBI Waiver Manual which reads, in part, that a participant will be “treated as an individual with consideration and respect” and violates the  manual again when it says participants must have their “complaints responded to and be informed of the resolution”.

Like I said, actions speak louder than words.

I filed a handful of complaints this year starting in March. I finally received the following letter from the DOH. It is dated November 5, 2010. It reads as follows.

Dear Mr. Kahrmann:

Please be advised that representatives of the Department of Health (DOH) have completed their investigation into the allegations you presented in your complaints to the Brain Injury Association of New York State (BIANYS) Complaint Line. A review of a series of emails and complaints going back to March 15, 2010 and most recently as August 30,2010 was conducted and a full investigation completed.

Please be assured that these issues have been appropriately addressed with all involved parties and no further investigation on the part of DOH is warranted at this time. DOH considers the investigation to be closed.

Sincerely,

Lydia Kosinski

Assistant Director Office of Long Term Care

cc: Mary Ann Anglin, Director

Like I said in the prior blog post. The DOH achieved the remarkable feat of putting words on a page and still the page is blank. Setting aside it took them eight months to respond, the response provides no clarity insofar as the investigation’s findings are concerned, none whatsoever. Would they say there response, as their manual mandates, treated this participant “with consideration and respect” ?

I am not and the Kahrmann Advocacy Coalition is not the only party that gets lip service from the DOH. The state’s Providers Alliance comprised of about forty waiver providers has done yeoman’s work putting together a package of suggestions and, like KAC, has again and again signaled a willingness to sit down and work with all parties.

We all would still sit down and work with the DOH anytime. But there needs to be sincerity on all sides, not just lip service and spin. A place to start might be the TBI Manual. Sources across the state say the DOH is rewriting the TBI Waiver Manual (again it refuses to confirm or deny this). If so, then they would be wise to ask for the input of all parties: brain injury survivors, families, healthcare professionals, the Provider’s Alliance, KAC, BIANYS, the Brain Injury Coalition of Central NY, the CQC and more.

To invite input from all parties would send a clear signal that the DOH is truly working for the benefit of brain injury survivors. To remain insular and wall parties out simply underscores what is becoming increasingly clear to all, it’s only about money. If they really cared, they’d be including all the aforementioned in the manual-writing process because we are the ones who know firsthand the challenges faced by those of us who live life with a brain injury – like me.

As promised:

TBI Complaint Line Protocol – Updated 1/2010

1. BIANYS conducts complaint intake and completes the BIANYS portion of the complaint form.
2. BIANYS emails complaint to DOH TBI Waiver Program.
3. DOH staff emails the complaint intake form to RRDCs. (If determined a Serious Reportable Incident, DOH staff contacts RRDS immediately by phone and check the appropriate SRI box on the form. DOH staff will follow up by emailing the complaint intake form to RRDS.) In those instances where the complaint is directed at the RRDC, DOH assumes responsibility to investigate.
4. RRDC confirms receipt of the complaint with DOH.
5. RRDC staff contacts the participant within two business days that the complaint has been received and investigation is in process.
6. RRDS investigates the complaint and completes the RRDS portion of the complaint form.
7. RRDS returns the completed form back to DOH within 30 days.
8. BIANYS will be notified when the complaint is closed via email.
9. BIANYS will provide DOH a monthly report of complaints.
10. DOH waiver staff meets monthly to review open complaints & discuss
outstanding issues.

Essential Elements of RRDC Investigation

a) Provide a brief description/summary of the complaint.
b) Provide pertinent demographic information of the participant and any other people related to the complaint.
c) Provide a summary of all completed interviews or statements of fact.
d) Provide a summary of documents and any evidence reviewed.
e) Provide a description of your findings and analysis of the event.
f) Describe all corrective actions taken.
g) Describe the current status of the complaint and/or participant and any conclusions indicated by the investigation. The Complaint Form must indicate the final status and disposition of the complaint e.g. allegation/complaint confirmed/substantiated, allegation disconfirmed
h) Complaints are to be maintained in a regional and DOH database and reviewed on an annual basis to establish trends, patterns and systemic issues.

No Brain Injury Training for NY RRDSs

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The very people hired by the New York State Department of Health to oversee the implementation of the state’s traumatic brain injury waiver receive no mandatory training in brain injury or the brain. 

Two Regional Resource Specialists from the Capitol Region, Maria Relyea and Robert Korotich, acknowledged in a meeting this week that the Department of Health requires no mandatory training in brain injury for RRDSs statewide. 

Given the fact it is the RRDSs who issue the decisions that brain injury survivors will have the services cut or denied altogether, the fact those issuing these decisions are not required to undergo any training about the brain is inexcusable. It’s tantamount to hiring a couple of folks off the street to have them oversee the care of those who’ve sustain spinal cord injuries or are dealing with Parkinson’s  when, with few exceptions, they don’t know anything about SCIs or Parkinson’s.

When you couple this with the fact the state’s Department of Health knowingly signed a contract that will funnel hundreds of thousand of dollars in the direction of Timothy J. Feeney, a PhD wannabe who continues to misrepresent his educational credentials and who has had, according to his own resume, no real training in brain injury, it is hard to reach any conclusion other than the DOH and those of Feeney’s ilk don’t give a damn about those of us who live with brain injuries.

The other conclusion that can be, I think, safely drawn, is the DOH feels it is appropriate to hire people to oversee  the TBI Waiver and directly influence the services waiver participants get or don’t get who are simply not qualified to do so. This is not only unfair, immoral and damaging to brain injury survivors, it is unfair, immoral and damaging to the many companies and individuals around the state who provide services to brain injury survivors. After all, they are expected to following the DOH/RRDS marching orders when the latter tandem knows less about brain injury than the providers do. 

The meeting this week referenced above was the conference I’d asked for that is allowed to take place before a Fair Hearing. My fair hearing is scheduled for December 1. Although I’d written to these RRDSs asking for the conference provided for before a fair hearing, both claimed they didn’t realize this weeks conference was the conference before the fair hearing, claiming that they thought I just wanted to talk about the DOH’s denial of my assistive technology requests.

And just when you thought things could get any slipperier.

Oh, almost forgot. I did inform both Ms. Relyea and Mr. Korotich that I want to have the pre-fair hearing conference with them before the fair hearing. I followed that up with and email confirming this.