Category Archives: TBI

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.

The Problem With Secrets

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The problem with secrets is most people can’t keep them.

Despite the New York State Department of Health’s refusal to confirm the directive for this writer, employees in several RRDCs (Regional Resource Development Centers) around New York State confirm the DOH has directed that waiver provider staff are not permitted to  advocate or testify for their clients in a Medicaid Fair Hearing. In fact, if they attend the Fair hearing, they must support the DOH’s position and not their clients.

Several sources say this directive was shared with RRDCs during a conference call with DOH official Beth Gnozzio.

Sources say they have been given two reasons for this. One is based on the slippery-slope notion that since providers are approved by the state to provide services, they are under contract with the state and to disagree with the state would be a conflict of interest (I suddenly feel like I’m writing about the Soviet Union). The second reason would be funny were it not so sleazy: This reason says since providers are paid to provide services to their clients, supporting their clients request for continued services would be self-serving and again, a conflict of interest. 

It seems to me that this is one of those occasions where facts and reason have little effect, at least not on the decision making of the DOH. The notion that being approved by the state precludes providers from supporting their clients would, I suppose, mean that doctors, psychologists and social workers, all licensed by the state, would be precluded from supporting their clients and patients.

Using the fact providers are paid for their work as a reason to stop them from supporting their clients would, I again suppose, mean that a doctor recommending treatment for his or her patient should not support the patient when an insurance company seeks to deny treatment because the doctor is getting paid for his or her work.

It seems to me we are witnessing institutional corruption.

You can be sure of one thing, more people will talk, more facts will come out into the light of day and, when they do, they will find their way to the pages of this blog.

The DOH and others would be well advised to pay close attention to Launcelot’s words in Shakespeare’s Merchant of Venice when he said, “but at length the truth will out.”

And it will.

 

A Denial & A Memo

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 The Denial

It came as no surprise today when I received a notice from the New York State TBI Waiver denying my request for white noise machines and a life alert. 

Never mind that I live with significant noise sensitivity secondary to the brain damage and never mind that I live with brain damage, a heart condition, PTSD and asthma and, by the way, live in a rural area far from a hospital. Never mind that my physician and my psychotherapist wrote letters documenting that the requested items were medical necessities.

What is clear is that the denial I just received, and similar denials being issued across the state, more often than not include every form of reasoning except the best interest of the brain injury survivor.

The denial was, I suspect, issued by some so-called medical director, who, in all likelihood, knows little about brain injury, never reviewed my records, never talked with my doctors or, perish the thought, me.

There are, as some of you may know already, a dramatic increase in fair hearing requests across the state in response to survivors of brain injury receiving notices that they are being kicked off the waiver,  or having their services reduced or  cut altogether.

Will I be asking for a fair hearing, a form of appeal provided by the law?  You bet.

More to come.

Memo to DOH

Early in  his first term President Obama said, “Sunshine is the best disinfectant.”  He meant that bringing things into the light, into the open, creating transparency, was the best way to shed light on dysfunction and wrongdoing, make it more difficult to engage in shady backroom deals. This sunshine also brings into the open the fine things that are being done, the hard working efforts that people and agencies and companies do make. Yesterday’s blog post praised Sunnyview Rehabilitation Hospital along with Natalie Marabello for ultimately handling a complaint in class way rich with integrity. Which is, more than can be said of the DOH, which is still reviewing the same complaint and has a complaint line protocol that does not require it to even respond to the complainant.

Over the years, in public and in private,  my stance has always been the same. If individuals, groups, companies or government agencies make decisions that truly protect the equal rights of people with disabilities (and all people by the way) and  assure that those who work with us are supporting our quest for independence, I will openly praise and support you.

If, on the other hand, there are individuals, groups, companies or government agencies making decisions that deny our equal rights and deny our right to achieve independence then I will, after private attempts at communication fail, expose you every single time.  That’s what advocates do!

I know some do not like it when this blog brings things into the open. But some of those who don’t like it bear some responsibility for things appearing in the blog. Consider this: when attempt after to attempt to communicate is not responded to,  what should the person with the disability do? Fall silent? If we do, then we are allowing the lack of communication to still our voices, and that is the last thing that should happen.

Silence has no place in this – sunshine does.

NY State Department of Health Blocks Medical Treatment

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Whether you are intentionally blocking medical treatment or you are doing so because you are incompetent, it is cruel and inhuman treatment, particularly when the treatment is prescribed by the doctor and wanted by the patient.   When it’s the New York State Department of Health blocking the treatment,  heads ought to roll.

As I mentioned in an earlier blog post, “Those close to me are beginning to think, with some justification it seems, that the New York State Department of Health is not only purposely dragging it’s feet signing off on a life alert and some assistive technology its own RRDC has approved for me, but is, in fact, preparing to boot me off the state’s traumatic brain injury waiver.”  I went on to say that the jury was still out for me but after a careful review of emails ranging from February 2010 to October 23, 2010,  it is clear the concerns of those close to me are on target. The DOH behavior is either intentional or it is incompetence.

If it is the latter, as many think, it means there are people with brain injuries in this state who are enduring the same kind of neglect I am.

A Review, an Anecdote, and the Timeline

Review

My brain injury was sustained in 1984 when I was held up and shot in the head at point blank range. The bullet remains lodged in the frontal lobe of my brain with bone spray throughout the left frontal and temporal lobes. One of the things I’ve learned over the years both from living with the damage and from working in the field of brain injury for more than 15 years is this; the role the injury plays in one’s life changes over time. For the past six years or more I am unable to work a full time schedule of any kind, fatigue has become that much of a factor. Moreover, my sound sensitivity has become very pronounced over the years, so much so that I will often use a fan or an old white noise machine so I can sleep, read, write, at times concentrate on a conversation.

In addition to this, my health has changed. I have a heart condition called a blocked left bundle branch. The left and right bundle branches are your heart’s pacemaker. When one becomes blocked, it is not always clear why, it never becomes unblocked. Research says a blocked left bundle branch is potentially the more problematic of the two. In addition, I deal with asthma, PTSD, and an on again off again fight with depression.

At any rate, all of the previous realities, along with the fact I live alone in a rural area, led me, along with my case manager, doctor, therapist and loved ones to conclude I would be wise to bring two forms of assistive technology into my life: three white noise machines so they can be kept in various areas of the house so my quality of life and ability to comfortably function would improve and, of critical importance, a life alert, so in the event of a medical emergency I can get assistance with the mere push of a button.

Anecdote

Several years ago I was meeting with a group of brain injury survivors, there was about 20 of us. One of those in the group, a friend of mine I’ll call Terrence, had, like me, sustained his injury from a gunshot wound to the head. Terrence and I were facing each other, each sitting at one end of two adjoining tables. Someone raised the question of what we would do if anyone ever pulled a gun on us again, threatened our lives again. Terrence was and is a cheerful animated human being with a beautiful heart and soul, but now his face darkened. So did mine. Terrence said, “Next time someone threatens my life they better not miss  ‘cause I’m gonna try’n kill’m. I’m sick of it.”  We were heart and soul joined in this. Our eyes were joined as I said, “Me too.” In both of us, and those like us, there is a bone chilling electrified intimacy when someone tries to kill you, threatens your life.

There is a heartless cruelty found in the minds of those who knowingly put the lives of others at risk. And, I can tell you, some of what joined me and Terrence in that moment churns through my veins now as I experience a Department of Health that is knowingly putting me – and no doubt others – at risk.

The Timeline

See Information Key Below for Further information

  • Discussion of sound machines/life alert surfaces in emails, in Feb. 2010
  • Feb. 26 email referencing voice mail from Sue Williams, from CFDS saying they will help me get sound machines.
  • April 9 email to Jessica Pakatar from William Buse (my therapist) documenting need for sound machines and life alert.
  • April 12 email documenting first unpleasant conversation with Natalie Marabello in which she said Jessica Pakatar should reach out to Rob Korotich to make sure therapist email enough. Note: Marabello does not inform us a letter from an MD will be needed for life alert and white noise machines.
  • May 21 email documents conversation that day with Sue Williams in which she said Jessica Pakatar could work with someone in CFDS business office to order to obtain sound machines.
  • Circa late May we are told by RRDC office that all necessary documentation was in for white noise machines and life alert approval.
  • Two months later on August 12 email documents phone call with Rob Korotich who says Jeanette Biggs of DOH now says MD letter is needed for sound machines and life alert. This is Four months after April 12 conversation with Marabello.
  • August 12: approx date I filed a complaint with DOH via BIANYS complaint line re: Marabello’s earlier behavior on the phone and poor handling of assistive technology request.
  • August 12 email from me filing complaint directly to DOH complaining about handling of Assist. Tech request sent to: Mark Kissinger, Mary Ann Anglin, Cavallo, Jessica Pakatar – No response from DOH
  • August 18: Marabello calls to investigate assist. tech. complaint, announces she is aware I have active complaint against her but says she cannot investigate that complaint. I hang up on her when she appears to imply I am feigning need for white noise machines and life alert. I send out an email same day to: Mark Kissinger, Mary Ann Anglin, Maribeth J Gnozzio, Bill Combes, Sim Goldman, Marie Cavallo, Beth Cassidy, Jessica Pakatar, Maria Relyea, KAC Leadership Team notifying them of her behavior. – no response from DOH
  • Circa August 19 file separate complaint with Sunnyview Hospital, Marabello’s employers re: her behavior.
  • August 26, extensive telephone Interview with DOH’s Jan Koenig  re: Marabello complaint and assist tech. complaint.
  • Letter sent same day as above via email to Jan Koenig at her request documenting complaint interview
  • Sept. 7 letter from my Primary Physician documenting need for life alert & white noise machines sent to SC & DOH (RRDC)
  • Sept. 14, Jessica and I meet w/Marie Relyea and Wendy Tracy re: Marabello complaint filed with Sunnyview.
  • Sept. 28 email sent to Jan Koenig expressing concern that I have heard nothing about Marabello complaint – no response from DOH
  • Sept. 28 send letter to NE Health CEO Dr. James Reed seeking status of complaint filed against Marabello via Sunnyview
  • Sept. 29 letter mailed to NE Health CEO Dr. James Reed re: Marabello
  • Oct 4 RRDC signs off on assist tech and life alert and forwards to DOH for signature
  • Oct 6 email to Gnozzio asking about HEAP and food stamp contacts in county I am moving to – no response from DOH.
  • Receive Oct. 6 letter from Sunnyview CEO Edward J. Eisenman presenting their complaint findings. Send thank you letter the following day.
  • Oct. 6 email sent to Beth Gnozzio copying Mary Ann Anglin, Lydia Kosinski and Jessica Pakatar again inquiring about hold-up on sign off on assist tech – no response from DOH
  • October 7 email to Jan Koenig copying Mary Ann Anglin and Mark Kissinger inquiring about complaint status – no response from DOH
  • October 12 email to Beth Gnozzio copying Lydia Kosinski and Mary Ann Anglin again seeking status of assist tech request – no response from DOH
  • Oct 13 email from Beth Gnozzio saying she has made recommendations and under internal review; does not address assist tech.
  • Oct 13 email to Beth Gnozzio asking when  assist. tech will be signed off on – no response from DOH
  • Oct 14 email to Beth Gnozzio inquiring about sign off – no response from DOH
  • Oct 17 email to Beth Gnozzio inquiring about sign off – no response from DOH
  • Oct 19 Mary Ann Anglin resends Beth Gnozzio’s Oct 13 email referenced above
  • Oct. 21 email to Beth Gnozzio copying Mary Ann Anglin and KAC Leadership Team inquiring about sign off for assist. tech. et al – no response from DOH
  • Oct 22 email to Beth Gnozzio copying Mark Kissinger, Mary Ann Anglin, Lydia Kosinski, Carla Williams, Bill Combes, Sim Goldman, Marie Cavallo and KAC Leadership Team – letting them know another complaint now filed via BIANYS – no response from DOH

Information Key:

BIANYS: Brain Injury Association of NY State

CFDS: Center for Disability Services, Albany, NY

RRDC: Regional Resource Development Center: Agency under contract with DOH to oversee waiver providers and services in a region of the state

Mary Ann Anglin: DOH Director, Division of Home & Community Based Care Services

William Buse, LCSW, PhD: Therapist

Jeanette Biggs: DOH employee.

Marie Cavallo: President of BIANYS

Bill Combes: NY State Commission on Quality of Care

Edward J. Eisenman: CEO of Sunnyview Rehabilitation Hospital

Sim Goldman: Senior Attorney for Disability Rights Advocates, Albany NY.

Lydia Kosinski: DOH Assistant Director, Divison of Home & Community Based Services

Natalie Marabello: RRDS (Regional Development Specialist) working for Capitol Region’s RRDC

KAC Leadership Team: Leadership committee for Kahrmann Advocacy Coalition

Mark Kissinger: Deputy Commissioner, NY State DOH

Jan Koenig: Member of the DOH employee assigned to investigate assistive tech. complaint and complaint against Ms. Marabello

Rob Korotich: RRDS in the Capitol Region

Jessica Pakatar: My case manager/service coordinator through Catholic Charities Disabilities Services, Albany, NY

Dr. James Reed: CEO of Northeast Health

Marie Relyea: RRDS Capitol Region

Wendy Tracy: RRDS Capitol Region

Carla Williams: DOH Deputy Director Office of Long Term Care

Sue Williams: Director of Service Coordination for CFDS

Endnote

The Key’s content clearly documents the number of people aware of the DOH’s behavior. Nevertheless, the DOH does not sign off on my assistive technology request which has been deemed a medical necessity by my doctor and therapist and approved by their own RRDC. As a result, no white noise machines and no life alert which, in short, damages the quality of my life and puts me at risk. What is even more unsettling is this; if their treatment of me is not aimed at me personally, that means there are many men and women around the state absorbing the same neglect and thus being placed at risk.

 

Is It NY DOH Retaliation?

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Those close to me are beginning to think, with some justification it seems, that the New York State Department of Health is not only purposely dragging it’s feet signing off on a life alert and some assistive technology its own RRDC has approved for me, but is, in fact, preparing to boot me off the state’s traumatic brain injury waiver.

The RRDC or Regional Resource Development Center is the contract employee for the DOH that oversees waiver providers in a specific region.

I have not fully drawn this conclusion myself, but I am watching matters very, very, very closely.

It is curious to me that now that I am about to move from one region of the state to another, it appears I may have to qualify for the waiver all over again. It reminds me of times when my closest friend Michael, who lost both his legs in Vietnam, would get a notice from the VA announcing a reduction in his VA benefits. Michael would drive in, point at his legs and say, “Are they growing?”

What has some close to me horrified is their concern that the DOH is, if not willfully, knowingly placing me at risk. I live alone in a rural area with a brain injury, asthma, a heart condition, agoraphobia, PTSD and an on again off again fight with depression. Despite repeated emails to the DOH I can’t get an answer  to why the hold up. It seems to me one of two things (or both come to think of it) are true here. This is retaliation against an advocate or this is s systemic problem and what I am experiencing is being inflicted on brain injury survivors across the state. I’d rather it be the former frankly.

The first request for the life alert and white noise machines was made last March and the final paperwork was in by June and then, of course, no one at DOH mentioned I needed a letter from my MD and now that has been taken care of.

But why retaliation? There are an array of reasons perhaps. I have not been quiet about their utterly irresponsible decision to enter into a contract knowing full well it will bring an unqualified, dishonest bully back into the lives of brain injury survivors, their loved and providers. It is also my understanding they are not particularly fond of having their actions revealed in this blog and perhaps too they are not pleased about a recent grievance I filed against a specific RRDS in the Capitol Region.

In talking to this RRDS about the lag in time for my assistive technology she snidely said, “Well, Peter, you can waste my time by talking on the phone, or, if you really need the life alert like you say you do and you really need the white noise machines like you say you do, why don’t you just hang up, call your doctor and get a letter?” To have someone, anyone, imply that you are somehow feigning the need for a life alert or any form of assistive technology is beyond despicable.

I filed two complaints against this person. One through Sunnyview Rehabilitation Hospital and one through the DOH. Sunnyview sent me a very informative and responsible letter detailing the outcome of their investigation and the DOH not only has yet to tell me the outcome of their investigation, they’ve promoted this individual to the position of Lead RRDS.

There will be more in this blog on this matter. I will not remain silent when the health and safety and equality of others are placed at risk and  I will not be silent when my health and safety and equality are placed at risk.

On purpose or not, that is exactly what’s happening.