Tag Archives: Department of health

Thoughts on New York TBI Waiver

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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.

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Equal Rights Needs No Competition

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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.

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Kahrmann Coalition Meets with NY DOH Officials

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In a wide ranging conversation marked by mutual respect and openness, representatives of the Kahrmann Consumer Advocacy Coalition met with Mark Kissinger, deputy commissioner for the New York State Department of Health, and members of his staff.

As founder of the KCAC, and one who will never blink when it comes to my support for the equal rights of all people, in this case, people with brain injuries and their families, today’s meeting very much appeared to be the beginning of what I suspect both sides hope will be an ongoing healthy dialogue.

The DOH said a newspaper article reporting that a hold had been put on the transfer of brain injury survivors consumers to licensed home care agencies was mistaken. While Kissinger and his staff  could not guarantee no consumers would wind up in nursing homes as a result of the transfer of services,  they assured us they were working on a daily basis with providers, focusing on each individual consumer, to make sure consumers are not going without the home and community support services they deserve. Moreover, the DOH said it is strongly discouraging nursing home admissions.

As for the timing of the late-December 2009 directive to providers requiring they transfer home community staff services to licensed home health care agencies in 30 days, Kissinger and his staff said waiver providers were told in 2006 that all agencies providing home and community services were required to be licensed home care agencies and, in 2007, were notified  of this requirement in writing. According the DOH, providers were directed to be in compliance by the end of September, 2009,  had that deadline extended to the end of December 2009, and then had that deadline extended another month.

A number of other possibilities were discussed, including, but not limited to:

  • Quarterly meetings between the KCAC and the DOH.
  • Quarterly meetings between the KCAC, the DOH and an alliance traumatic brain injury waiver health care providers.
  • Increase reimbursement rates for providers
  • The establishment of reimbursement for staff training relevant to the population being served.
  • Including KCAC members as unpaid participants on  DOH survey teams.
  • KCAC meeting consumers across the state in day programs offered by waiver providers.

As a civil rights advocate on all fronts: women, gay and lesbian, people with disabilities, blacks, Latinos, Jews, Muslims, and so on, and as one who lives with a brain injury, I, like many others, know only too well  what it is to be condescended to, or patronized. We were in no way treated like this by Mark Kissinger and his staff.  We were not condescended to or patronized, we were not rushed to end the meeting, and while all the answers were not every inch of what we hoped for, no question we asked was ducked or avoided. We were treated as equals. And that, no matter how you slice it, is good news.

Today was a good beginning for the relationship between the KCAC and the Department of Health. Next, we will be seeking to meet with the Providers Alliance and, of course, we look forward to a follow-up meeting with Mr. Kissinger and his staff.

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It’s Nothing Personal

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It seems some think my exposing a contract employee with the New York State Department of Health (DOH) for not having the college degrees he says  he has is something personal on my part. Wrong. Defining my action as something personal is a well-worn way of derailing advocates in the first place. Since the facts work against you, let’s say the advocate is on some personal vendetta and, if not a personal vendetta, off their rocker.

I am not off my rocker, at least not today (smile folks, there is nearly always room for humor), but my actions regarding Timothy J. Feeney are nothing personal.  In fact, it would be interesting to learn what, specifically, makes some think it is personal.  In other words, say it out loud folks, so we can all hear. Don’t be shy.

The facts of the matter are rather straightforward. Timothy J. Feeney presents himself as Dr. Feeney or Timothy J. Feeney PhD. He is neither. By his own admission, both his masters and his doctorate were issued by the now defunct Greenwich University, not to be confused with the prestigious University of Greenwich in England. Greenwich University was a non-accredited school, a diploma mill, that operated out of California and Hawaii in the 1990s before moving to Norfolk Island off the coast of Australia in 1998. Greenwich degrees are not recognized as valid anywhere in the United States, much less planet earth. Greenwich closed its doors in 2003.

Now to the question of why should this be a concern to all New Yorkers. First and foremost, when you are receiving health care in any form, you have a right to assume those providing the care are who they say they are. Moreover, if someone is going to make his or her living off of hard-earned taxpayer dollars, taxpayers have a right to assume they are who they say they are. This is not the case when it comes to Mr. Feeney. To make matters even worse, Mr. Feeney, in an unsolicited e-mail to readers of one of my blogs, said the DOH knew all along about the source of his bogus degrees.

Mr. Feeney is nearing the end of his third five-year contract with the state’s DOH as head of the Neurobehavioral Project which is arguably the most powerful influence over the implementation of the state’s Traumatic Brain Injury (TBI) Medicaid Waiver Program, in itself, a laudable presence.  The waiver provides services to brain injury survivors living in the community. However, it is anyone’s guess how many health care providers have had their doors closed by Mr. Feeney or had their ability to admit people into their program put on hold by Mr. Feeney and his staff. Moreover, one must ask how many survivors of brain injury have been denied waiver services or discharged from waiver services under the direction of Mr. Feeney, all under the pretense that he is, in fact, Dr. Feeney or, Timothy J. Feeney, PhD. Can you imagine being the mother or father of a child with brain injury and you acquiesce to Mr. Feeney’s directives only to find out later he misrepresented himself to you?

Then, of course, we come to the question of state taxpayer dollars. Several million dollars in state tax dollars have been earmarked for Mr. Feeney and his small staff over the years. His last contract alone provided for nearly $2 million in state tax dollars for salary and expenses.

Recently I sent a letter to DOH employee Patricia Greene-Gumson who, along with DOH employee Bruce Rosen, have been the two DOH employees closest to Mr. Feeney over the years, asking her to investigate the situation and to investigate why none of Mr. Feeney’s contracts require the head of the Neurobehavioral Project to have so much as a masters degree,  a fact that would lead some to suspect the contract of being jerry-rigged.  The letter was copied to Deputy DOH Commissioner Mark Kissinger, Ms. Gumson’s supervisor, and the Inspector General.

Feeney’s contract expires this September 30th. My hope is the DOH will not make the same mistake four contracts in a row.

Here’s the thing. When you live with a brain injury, as I do, or you are the mother or father of someone with a brain injury, or the husband or wife or sister or brother of someone with a brain injury, you have a right to expect those who are there to help you to be who they say they are. Anything short of that is unacceptable.

 

BRAIN INJURY INCLUDES ALL OF US

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– The word is getting out that you are planning a book on your experiences working in the field of brain injury.

– Almost. A book about living with a brain injury and working in the field.

– Where does it stand right now?

– Planning it in my head. It’s a narrative of the experience. What I’ve encountered, seen, experienced. People I’ve met, worked with, the survivors, their families, and the healthcare system itself is a character.

– Is it a tell all book?

– You mean like a gotcha piece?

– Yes.

– No. It’s a tell the truth book. When it comes to programs that provide services to those of us with brain injuries living in the community, it’s essentially a new field. So there’s a real mix on the results front as everyone is on a learning curve.

– So mistakes get made?

– Sure, but that’s part of life and not necessarily a bad thing at all. As long as the motivations behind people’s actions and choices are in a healthy place, mistakes are growing pains. When the motivations turn poisonous, then the process becomes diseased, and that’s pretty tragic.

– You seen that?

– Sure. It’s like any field, really. Some folks in it are amazing, some aren’t. Some are honest and honorable, some aren’t. What the field is missing, at least in my state, is real thorough oversight. Too often, those that are in the field for the wrong reasons are not held accountable. There are people in the Department of Health in my state for example that I like and admire and then there are others I don’t. I know one woman, the wife of a survivor of brain injury, who has filed complaints on her husband’s behalf and the DOH looks into it, or says it looks into it, and then tells her the complaint was unfounded. The curious thing is the DOH never talks to her or her husband during the investigation. That’s kind of like a mechanic signing off on the health of your car without ever looking at the engine.

– The book will focus on what you’ve encountered in the field as well?

– Absolutely. There have been times I’ve had to educate people I work with about the impact my brain injury has on my life. More often than not, they were great, got it, and translated the knowledge into their work. Other times, they’d nod, say yeah, okay, and then march on as if I’d said nothing.

– Sounds frustrating.

– In a way. But I think more than anything I was grateful to be alive to be in the position to try to help people understand, not just my injury, but the injuries others live with as well.

– What’s your next step in the book process?

– I’m working out a questionnaire for bunch of people, about demographics. One of the amazing things about those in the field of brain injury is their diverse backgrounds. People from different fields. Different educational backgrounds, different economic backgrounds, and more. While it’s not the main thrust of the book, its material I want to lace into the book. I mean look at me, I’m a high school drop out with a GED and a few college credits, and a former New York City cabby. So you have a real rainbow of folks.

– So the questionnaire is –

– Just to get peoples demographics collected so when I interview them I can focus on their experience and not waste their time with things like what types of jobs have you worked at or where did you go to school or where’d you grow up. When I meet with people to interview them I want to focus on the content of their experience in the field.

– And survivors?

– I will absolutely be talking with survivors and their families, absolutely, I’ll be sending the same questionnaires to them for the same reason; survivors, like those in the field come from every background you can imagine. Same with the advocates.

– It’s as if brain injury in a way includes all of us.

– Now you’re getting it.
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