Tag Archives: Department of health

BIANYS is not an advocacy organization

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The Brain Injury Association of NY State is not an advocacy organization despite its claim to the contrary.

Without question they are a superb source of education when it comes to brain injury and the NYS Department of Health and providers statewide would be wise to learn from them, but they are not an advocacy organization and should stop saying they are.

The Oxford English Dictionary, considered the most comprehensive English language dictionary in the world, defines advocacy as “the giving of public support to an idea, a course of action or a belief.”  I can’t think of a single public stance or public statement BIANYS has made advocating for brain injury survivors in the state, certainly not when the advocating would require them to hold the NYS DOH accountable for it’s deplorable treatment of brain injury survivors, particularly brain injury survivors on the state’s TBI Waiver.  While BIANYS leadership will deny they are in bed with the DOH, their actions or lack thereof indicate otherwise.

Consider the following:

  • If you read through past BIANYS newsletters you’d be hard pressed to find so much as a blurb about anything they are actively advocating for. BIANYS leadership will tell you, they’ve told me, that they have their way of doing things and they do advocate. I may be the first to notice the phrase, stealth advocacy. If those you claim to care about and serve are never informed of your advocacy efforts, then something is deeply wrong.
  • BIANYS was dead silent when it came to light in 2008 that Timothy J. Feeney, then the most powerful force in the TBI waiver, was misrepresenting his credentials to all comers, claiming to have a valid PhD and valid masters degree when he had neither. At the time DOH would close a provider down or stop a provider’s admissions solely on Feeney’s say so. I remember Feeney telling one provider that if he learned they were including cognitive therapy in their program he’d close them down. A statement like that makes incompetence look like expertise.
  • When the Feeney situation was brought to BIANYS’s attention by this writer (I was a BIANYS board member at the time) BIANYS made it clear they would do nothing. In fact, one board member who I will not identify, wanted to know what difference did it make if someone was lying about their credentials if they did good work.
  • BIANYS refusal to address the Feeney issue and advocate for the rights of brain injury survivors, their families and providers across the state led me to resign from the board. It was as if I’d part of an organization that claimed to stand against anti-Semitism yet fell silent when it was informed someone in power was abusing the trust and, in this case, clinical safety, of Jews.
  • When it came to light last year that the DOH issued a directive blocking service coordinators from supporting waiver participants at Medicaid Fair Hearings, a directive that can only be seen as an attempt to deny waiver participants real justice, BIANYS uttered not so much as a syllable.
  • Then, of course, there is the matter of the  TBI Waiver complaint line which is answered by BIANYS. BIANYS has been complicit in a TBI Waiver grievance process that does not inform complainants of the results of their complaints. Once a complaint is “resolved” by the DOH,  BIANYS receives written notice from DOH letting them know that the complaint’s resolution:  resolved, unfounded etc. BIANYS staff are not even permitted by BIANYS leadership to inform complainants of these results.

A silent advocate is not an advocate. If BIANYS does not believe me, perhaps the words of these three folks might enlighten them (italics are mine).

Dr. Martin Luther King Jr. “Our lives begin to end the day we become silent about things that matter.”

Ruth Messinger (currently the President and CEO of American Jewish World Service). “If there’s one thing that Jews understand, it’s the danger of silence from the international community.”

Thomas Jefferson. “All tyranny needs to gain a foothold is for people of good conscience to remain silent.”

In the meantime, BIANYS should no longer say they are an advocacy organization – until they are.

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.

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.

Truth and Advocacy

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In a Merriam Webster Dictionary I was reading recently truth is defined as “sincerity in action, character, and utterance” and as “(1) : the state of being the case : fact (2) : the body of real things, events, and facts”.

Advocates, civil rights activists, work for a truth that says all people are created equal, and therefore deserve equal rights, equal treatment under the law. Essentially, all people deserve equal treatment in the world they live in. It is the advocate’s role to shed light on things when equality is being denied, either unwittingly or purposefully. I do not think it is possible to knowingly deny someone their rights, do nothing about it, and then claim your actions aren’t purposeful.

One of the difficult things for me, and other advocates I’m sure,  is when the facts of the matter, the truth as it were, leads down a path we’d rather not travel. A path that is unsettling, scary, heartbreaking, or deeply disappointing. Moments  when we discover people or groups we believed in, and liked, and in some cases still like, were not entirely who they said they were. However, I cannot, nor should any other advocate, spare another their reality, not if that reality denies others their equality.

Recently I was asked why I make audio recording of certain meetings. Before I explain let me say that participants are always aware the meeting is being recorded. There are several answers to why they are recorded and while they will continue to be recorded:

  • the recordings serve as a reasonable accommodation for those of us with certain disabilities.
  • the recordings provide an accurate record of the meeting itself.
  • the recordings contribute to a desperately needed transparency.
  • the recordings help keep the light shined on the truth of what is being said and, for that matter, not said.
  • the recordings keep the fire of accountability well lit.

It was somewhat amusing recently when someone told me that when I write my blog about meetings I am using my interpretation. Well, yes, that’s true, and, when you think about it, rather unavoidable. After all, whose interpretation would I use but my own? However,  this person’s smile-producing observation does have relevance. My blog pieces are my perspective for sure. Which is why recordings of meetings will be made available to other meeting participants upon request. I can’t get fairer than that.

And that’s the truth.

TBI Waiver’s New Beginning Maybe – Part II

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The New York State Department of Health deserves enormous credit for its consistent willingness to interact with the Kahrmann Advocacy Coalition. Any notion some of us  may have had that there would be resistance to interacting with us was quickly erased by DOH officials, and in  discussions with KAC members subsequent to my  recent meeting with DOH officials, the gratitude is very real.

Assurances that Timothy J. Feeney’s will not have the contractual authority he had under previous contracts (there were three five-year contracts, one with STIC who subcontracted the work to Feeney and two directly with Feeney’s company)  were deeply appreciated, especially since DOH officials fully acknowledge that two of Feeney’s college degrees are not valid (he does not have a valid masters degree or a valid PhD).

There are some things that need to kept front and center and in focus. While it is true that the DOH is entering into a contract with STIC (Southern Tier Independence Center in Binghamton, NY) and not with Timothy J. Feeney’s companies, School and Community Support Services Inc. and School and Community Support Services (one is for profit, one is not-for-profit), the DOH entered into the agreement knowing full well STIC would be giving  Feeney they work and that Feeney will be misrepresenting his credentials when he does the work the contract calls for.

One of the things that has been again made clear to me over the past 24 hours is this. Survivors of brain injuries and their families and quite a few providers are disgusted that anyone would knowingly enter into a contract knowing the contract’s deliverables will be provided by someone who will be clinically misleading the very people he is supposed to be helping.

What would officials say when  the mother of a brain injury survivor who asks, “Why is it okay for my son to be treated by someone who says he’s a doctor when he’s not?” Would anyone actually say, That’s not the point, his educational credentials are not the point, the contract deliverables don’t involve that.

What would they say to the wife who asks, “How is it that the state pays a couple of hundred thousand dollars to someone knowing that Feeney does have the credentials he says he does? Would they be okay if he was treating their husband?”

What would they say to the Vietnam Veteran who said, “I’ve been through enough shit in life, they expect me to listen to this fraud and they’re paying him?”

These are real questions from real people. They deserve answers. The answer they feel they are getting is that they do not deserve the best. Giving someone clinical power in the lives of others knowing that he or she is willfully misleading them is inexcusable.

However, it is in a very real way reassuring to all to hear that Feeney will not have the power he did before. And, it was clear to me that all the officials that I met with will not tolerate any intimidation tactics whether they be aimed at consumers, families or providers. Officials made a good point too when they said people have to report these tactics, file complaints. They were clear about this, and I believe them.