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NY State DOH Evasive with State’s Brain Injury Council–Part I

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The New York State Department of Health waited until the day before  the TBISCC (Traumatic Brain Injury Services Coordinating Council) April 14 meeting to inform council chair Michael Kaplen that  no DOH officials would be available to  explain why service coordinators are being told – by the DOH – that they must side against their clients at Medicaid Fair Hearings.  Never mind that the issue had been on the council’s public agenda and never mind that the council had requested presentations on the fair hearing issue at their last meeting.

““I was informed yesterday by the department that although we’d requested presentations at the last meeting as part of today’s program and although those items were in our agenda and in fact was in the published agenda by the health department originally, no one from the health department was available,”  Kaplen said.

Service Coordinators are the case managers for people with brain injuries who are on the TBI Medicaid Waiver. Some brain injury survivors live with communication or processing deficits as well as memory deficits; sending them into a Medicaid Fair Hearing without the support of their service coordinator is like sending a lamb to slaughter, and the DOH knows it.

According to the DOH’s own website, “The TBISCC is charged with recommending to the Department of Health long range objectives, goals and priorities. It shall also provide advice on the planning, coordination and development of services needed to meet the needs of persons with traumatic brain injury and their families.”

The Unwritten Directive

In a telephone conference last year DOH official Maribeth Gnozzio issued a directive saying service coordinators were to side with the DOH if they appeared at Medicaid Fair Hearings. The DOH has no written policy or regulation in place and DOH officials have been careful not to put the directive in writing. Sources say they DOH claims says because service coordinators work for providers who are approved to provide waiver services by the DOH, there is a conflict of interest if they side with the participant. Moreover, because service coordinators get paid for their work, advocating for a waiver participants is self-serving. Both positions have no merit. First of all, the very nature of being a service coordinator requires  advocating for your client. The notion that getting paid for their work is a conflict of interest would be laughable were it not so destructive. Were that the case, doctors, physical therapists, speech therapists, lawyers, psychologists and psychiatrists better not recommend treatment either because they’re licensed by the state too and get paid for their work.

Although Kaplen said the service coordinator “is the individual who possesses the most relevant facts about the individual who is contesting the Medicaid services and who is in the best position to provide at times helpful information to that person at the (Medicaid Fair)  hearing” he offered a startling and rather  Palinesque form of reasoning in support of the DOH position: “You have on the other side of the fence the conflict in regard to whether or not it’s appropriate for that individual (meaning the service coordinator) to be an advocate for that individual (mean the waiver participant) because  they are technically within the same department where the contest is taking place. I understand that conflict.” If he means a service coordinator is a member of the DOH itself that’s going to come as one heckuva surprise to service coordinators around the state, not to mention their employers, who are not the DOH.

To his credit however, Kaplen said, “At  a minimum the service coordinator must be permitted to present factual information at this hearing that the individual can’t possibly present on their own. That this individual needs to rely upon to effectively make their own case.”

Anglin responded by saying, “I appreciate that input. Maybe by the next (council) meeting (in June) we’ll have that guidance out there and we’ll be discussing that guidance.”

Kaplen then asked, “Is this going to be in the form of an official rule allowing for a period of public comment?”

Anglin said, “No. That would be a regulatory change and we’re not proposing to change any regulations. Basically it’s am interpretive guidance on what the current regulations are.”

In many areas of the state, including, but not limited to Long Island and Western New York, waiver providers have been told by the DOH that they cannot support brain injury survivors in fair hearings, this coming at a time when the DOH has ramped up efforts to either discharge waiver participants or cut back on their services. By the time next June rolls around, who knows how many more lives will be damaged by the DOH directive.

During the public comment portion of the meeting, with DOH official Maribeth Gnozzio present,  this writer said the following:

A Response and a Moment of Silence

“Speaking on behalf of the nearly 1,000 members of the Kahrmann Advocacy Coalition, this  has been a hot button issue for quite some time. We filed, I filed a FOIL request with the DOH asking for any regulations, policies, memos, anything in writing, anything, related to their policies on fair hearings. What we received and all we received was a slender binder about how to train an administrative law judge. It’s a curious thing to me because earlier on (during the meeting) Mary Ann Anglin was talking about what was going on (with the drafting of the guidance referenced above) would not require public comment because it was an interpretative guidance of a regulation. Well, if it’s an interpretive guidance of a regulation that would indicate there’s a regulation in existence that is related to Medicaid fair hearings but the (DOH’s) FOIL response only got a binder on how to train an administrative law judge.

It is important that you as council know what we as coalition are hearing. We know that there was a phone conference with Ms. Gnozzio and RRDCs (Regional Resource Development Centers) throughout the state in which the RRDCs were instructed, told, that service coordinators are not permitted to advocate on behalf of participants in fair hearings. Several emails went into Ms. Gnozzio and she responds to nothing nor does she respond to phone calls.

What’s curious to me is when the department is talking about writing a directive, coming up with a policy to address this, there was already a verbal directive. We have members from around the state, they’ve been told by Ms. Gnozzio through the RRDCs that they can’t do this.”

At this point Mr Kaplen asked that I not make this personal to which I said, “It’s not personal. It’s a statement of fact. It seems highly arbitrary and capricious that these directives were given out… We, at this point, experience this as a willful effort to get as many people off the waiver as they possibly can.”

Council members and DOH officials responded with absolute silence. Silence from members of an evasive state  agency that is supposed to care about individuals with brain injuries and silence from a council that is charged with advising the DOH on what the DOH can do  “to meet the needs of persons with traumatic brain injury and their families.”

 

Stay tuned for Part II

 

NY State DOH: Anything but Open

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If change under new Governor Andrew Cuomo includes a new spirit of ethics and openness, the message has yet to reach the state’s department of health.

As this blog noted in a January 11 post, the DOH’s response to a FOIL (freedom of information law) request for any and all DOH policies and procedures and emails regarding Medicaid Fair Hearings resulted in their sending only a slim training binder for fair hearing officers. If this is an honest and comprehensive response, it means the DOH has no fair hearing polices and procedures and no DOH employee has ever ever ever sent email discussing referencing fair hearings in any way. So, are we looking at incompetence, dishonesty, or a healthy dose of both?

Now, today, I received a letter from Robert “Jake” LoCicero, an attorney in the state’s Records Access Office. I’d sent in a FOIL request seeking the following linked to DOH officials Mary Ann Anglin and Maribeth Gnozzio.

– Any and all emails or other written forms of communication authored by Maribeth Gnozzio to any and all RRDCs in the state from January 2009 to the date of this request.
– Any and all emails or other written forms of communication authored by Mary Ann Anglin that were sent to or copied to Maribeth Gnozzio.

In today’s letter LoCicero let me know efforts are underway to gather the information but  they may want to charge me “an amount equal to the hourly salary attributed to the lowest paid agency employee who has the necessary skill required to prepare a copy of the requested record.” I already called the NY State Committee on Open Government. Over the years I’ve filed dozens of FOIL requests and the law says you can be charged no more than 25 cents a page.

Anyway, nice to know our department of health has thus far, despite our new governor, found a way to continue its secretive, insular, non-cooperative patterns of behavior.

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.

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.