Tag Archives: BIANYS

The Danger of Silence

Posted on by
Reply

There is little doubt silence has played a significant role in enabling the the denial of civil rights to, not just brain injury survivors, but all people with disabilities.

Rarely does main stream media so much as lift its pen to speak out on the dysfunction and, yes, moral corruption, that, to focus on the group I currently pay closest attention to, people who live with brain injuries.

The troubling silence of the main stream media is, sadly, not surprising, and perhaps that will change in the near future. What is far more troubling is the number of voices from within the world of brain injury that remain unheard. Voices on both the advocacy and provider front.

Yes, there are survivors and family members who remain silent, but I can tell you their silence is, more often than not, driven by fear of very real threats.

And the excuses for the silence boggle the mind! Take the fact Timothy J. Feeney continues to misrepresent his credentials to brain injury survivors, children with disabilities, their families and more. Someone I like and respect recently said, while referencing the contract the New York State’s Department of Health essentially handed Feeney despite knowing of his deceit, “Well the contract doesn’t require” he have a masters degree and PhD, as if somehow this fact negates the need for any advocate or advocacy group worth an iota of merit to confront that fact the man misrepresents himself to vulnerable human beings.

Then, of course, you have the NY State Department of Health who has not only handed the reins back to Feeney but has taken steps to undermine the rights of brain injury survivors in Medicaid Fair Hearings has been met with silence in some advocacy quarters as well.

There is no excuse for silence when people are being denied their civil rights. My patience with some who remain silent is beginning to run out.

 

Brain Injury Summit II This Friday

Posted on by
1

The second Brain Injury Summit will be held Friday morning in Albany.  Those invited included the Brain Injury Association of NY State, the New York State Department of Health, the New York State Commission on Quality of Care, the Providers Alliance, the Brain Injury Coalition of Central NY, and the Kahrmann Advocacy Coalition.

Given that effective and fluid communication between all is a challenge not uncommon in any multifaceted system, communication will be the primary focus.

The DOH of late has taken a great deal of heat, both from this “pen” and from others. It is my sincere hope that some of the challenges now being faced by survivors, providers, advocacy groups and, not incidentally, the DOH are clarified so when all parties leave the summit, heads are in a more serene place, there is greater clarity all around,  and the commitment to open and effective communication is, in some instances renewed and in other instances begun.

All parties actively took part in the first summit and I fully expect the same this time. There are some justifiably frightened survivors across the state and some understandably worried providers. To say lives are at risk is anything but an understatement.

 

NY State DOH Sinks Lower

Posted on by
2

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.

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

Posted on by
1

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.

It’s the Ethnic Cleansing, Stupid: Part II

Posted on by
Reply

Max unfolds his Daily News for the umpteenth time and says, “They’re cutting all the subsidies.”

“Yankees lost again,”  Mort says, seeing the sports headline.

Martha looks at Mort, then Max, says, “They don’t care my brother. They’re denying services and cutting subsidies all over the place.”

Young woman twirling her coffee cup on the table top says, “This one dude on the waiver had to move, landlord needed the house for family, something like that, and because he stayed with a friend for a few weeks till he found his next place, they fucked him out of his rent and utility subsidies.”

Dolly says, “Where’s all the money going?”

Max folds his Daily News and slips it under his right arm, presses it tight against his chest. “The rent and utility subsidy is state money. Some of it’s going to Feeney.”

“The messianic little shit,” Martha says. “He’s still bullshittin’ planet earth about his college degrees, D-O-H doesn’t give a shit.”

“Brain Injury Association doesn’t either. You didn’t hear a peep out of them when his bullshit degrees became public,” Max says. “But that ain’t even the point. Think about this. They all march around saying how much they give a shit about us, but what happens. They’re throwin’ people off the waiver left and right, sending them into the streets with no housing help claiming they have no money, but they sign a contract  that’s throw’n more’n a quarter million state money to that asshole Feeney. You imagine how many folks could get housing help with that money?”

Dolly, tearing up again, says, “The fix is in.”