Category Archives: Department of health

Is It NY DOH Retaliation?

Posted on by
Reply

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

Posted on by
Reply

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

Posted on by
Reply

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.

Thoughts on New York TBI Waiver

Posted on by
Reply

One of the primary challenges faced by New York State’s Traumatic Brain Injury Waiver is a lack of understanding of the brain exhibited by the majority of those provider services to those of us who live with brain injury and by those saddled with designing and implementing the waiver in the first place. There are also those who provide services to those of us who live with brain injuries whose sole purpose is to keep us dependent on them so they can rake in the dough.

The waiver is a Medicaid program that began in 1995 that pays for services designed to keep people living in the community. It’s stated purpose is both honorable and needed. However, its design and implementation  has its problems. It is reasonable to expect this with  any relatively new program but the waiver is fifteen years old now and should be in better shape than it is. For example,  providers ought to receive reimbursement for staff training directly related to brain injury. Right now this kind of staff training puts an unfair strain on provider coiffures.

It must be acknowledged at the outset of this missive that there is much that is positive about the waiver, primarily the fact that its very existence afford some who live with brain injuries to live in the community as opposed to be warehoused in institutions. The problem though is that a number of those who provide services under the waiver make choices that appear to be more driven by the desire to keep someone on the waiver rather than help them reach their maximum level of independence. In other words, an unhealthy form or profit motive coupled, in some cases by the dysfunctional and cruel desire to control others, defeats the very purpose of the waiver in the first place, and in some specific cases, ought to result in criminal charges given that  indentured servitude (and slavery) is against the law.

It seems to me that the way to approach the challenge of improving the state’s waiver is to not come into the process pointing fingers. You come into the process steadfast and tenacious in your commitment to get the bow of the ship, so to speak, headed in the right direction. There are many on all fronts: advocacy, family, survivors, department of health officials, a providers who are committee to doing the right thing. They must be joined in their commitment to this. However, the must be equally joined in exposing any person, process, agency or official who is part of the problem.

Those who are part of the problem need to be exposed and dealt with.

______________________________

Equal Rights Needs No Competition

Posted on by
Reply

Groups promoting equal rights should never be in competition with each other. The fight for equal rights needs and deserves as many honest voices as it can get.

I am most directly involved with promoting the equal rights of people with brain injuries, with their right to live in the most integrated setting.

Fortunately in my state there are some solid voices involved in this fight. The Brain Injury Association of New York State is the leading advocacy organization in the state;  the Providers Alliance is comprised of companies and individuals who provide services so some who live with brain injuries are able to live in the community: the Kahrmann Consumer Advocacy Coalition is a statewide coalition founded by and run by survivors and their families;  the Brain Injury Coalition of Central New York is comprised of an extraordinary group of survivors, family members and health care professionals; the National Brain Injury Foundation in Utica brings hope and empowerment to survivors and their families; the Traumatic Brain Injury Services Coordinating Council (TBISCC) was formed by an act of the New York State Legislature to advise the Department of Health regarding service needs of persons who have sustained a traumatic brain injury, and the New York State Department of Health and the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities.

Given a recent productive meeting between the KCAC and Mark Kissinger, deputy commissioner for the New York Department of Health and his staff,  along with my knowledge and experience of those in all of the aforementioned groups, New York State is blessed to have them all and very much needs them all. There is no such thing as too many groups working for the right of all survivors of brain injury to live as independently as possible in the most integrating setting as possible.

The KCAC will be meeting with the Mr. Kissinger and his staff again in the next few months and has already reached out to the Brain Injury Association of NY and the Providers Alliance for a meeting. Moreover, we are already talking with both the NBIF and the BIC of Central New York. What is true about those in all the groups mentioned in this missive – including the DOH for those who may doubt it – is everyone’s heart certainly appears to be in the right place.

I hope and pray all of us are wedded to my favorite definition of humility – humility isn’t thinking less of yourself, it is thinking less about yourself  – and  join together, work together, and urge each other on. If any of us get caught up in the destructive winds of competition and ego, we hinder the very thing we are all really about – equal rights.

This is not the life path I was on when I was shot in the head 1984. I was writing, driving a New York City cab, and pondering a career as a paramedic. But the squeeze of a teenage finger changed all that. And so here I am, connected to some wonderful people and some wonderful groups throughout this state.

And so we keep on moving, one day a time, humble and humbled up, which is at it should be. Life happens to us whether we like it or not. It does not go on forever, so let us all join together and work  heart and soul to make the world a better place for all people. And that includes each other.

_____________________