NY TBI Waiver: Not Always Health or Care

I’ve been living in a new county in New York for four months now and I am still waiting for the TBI Waiver’s RRDC (Regional Resource Development Center), the contract employee of the state’s Department of Health that represents the DOH and oversees those who provide waiver services and waiver service recipients, like myself, in a particular region, to approve my service plan.

Not a surprise, though it should be.

Now, to say the the state’s DOH has been anything but impressive in it’s management of the waiver of late is an understatement. Let’s add another fact to the mix. The RRDC in my area is STIC,  the Southern Tier Independence Center in Binghamton.  Have you read about them before in this blog? Of course you have. They’re the ones who hired Timothy J. Feeney of fictitious college degree fame to play a major role in STIC’s new contract for the Neurobehavioral Project linked to, wait for it, the TBI Waiver.  When STIC’s executive director, Maria Dibble, was notified that Feeney’s claim to have a valid masters and doctorate was bogus, it apparently didn’t matter.

Is it any wonder there is some inexplicable delay in signing my service plan? I am waiting for a discharge from the waiver notice any day now claiming that somehow the brain injury I live with has, what, gotten better? In truth, it debilitating impact on my life has increased dramatically. But I don’t expect that matters to some either.

As a side note, or perhaps not so side note, it is also worth noting that I’ve yet to receive a decision from my Fair Hearing held on December 1, 2010, a Fair Hearing in which we sought to reverse the DOH’s denial of my request for a life alert and white noise machines given the increase in sound sensitivity I live with. And hey, this month is an anniversary of sorts, given that it is now one year since we first asked for them.

Like I said, the TBI Waiver is not always healthcare because sometimes it lacks commitment to health and sure as hell lacks care.

NY State DOH: Anything but Open

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.

NY State’s DOH Dysfunction Continues

There is no doubt New York’s new governor Andrew Cuomo has his work cut out for him in his push for ethical and accountable behavior on the part of state employees and state agencies. Evidence of the widespread dysfunction is certainly on display in the response I received in yesterday’s mail  to a FOIL (Freedom of Information Law) request I filed on December 12, 2010 seeking documents from the state’s department of health.

The December 12 FOIL request asked for the following (quoted directly from the request itself):

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

And what arrived in yesterday’s mail as a response, a slim binder used to training fair hearing officers. A disturbing and seemingly disingenuous response to say the least. Upon reflection here is what is far more disturbing; I wasn’t surprised.

I’ve filed another, far more specific, FOIL request.

Stay tuned.

Memo to Survivors & Providers: Shine the Light!

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.

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

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.


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.