Category Archives: TBI Waiver

Belvedere Says No to Survivors’ Coalition

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I’d like to say I’m  surprised that the Belvedere Brain Injury Program owned by John Mccooey will not let the Kahrmann Advocacy Coalition, founded by brain injury survivors, the very people Belvedere claims to serve, meet with fellow survivors in the Belvedere program, but this has always been an honest blog and I see no reason to change that.

Of course, preventing a coalition founded by those you claim to care about from meeting with survivors who participate in your program is a red flag if ever there was one. But I am not surprised. I worked for and with Belvedere for quite some time. I actually interviewed with them on 9/11. At first it was a troubled provider but it appeared as if owner John Mccooey truly wanted to develop the best possible services for the brain injury survivors in the program and it actually became a really good program, until, that is, Belvedere opened a substance abuse component. When that happened, everything changed.

Michael Loiselle who headed up and, to my knowledge, still heads up the substance abuse program, was about as dictatorial as one can be. More than once I heard him inflict one of his favorite expressions, “Too bad, so sad,” on a survivor who was talking about some tough time they were having. Moreover, Mccooey, then and now supports Loiselle even though Loiselle and the entire substance abuse program dictates to survivors what workshops they will or won’t attend. Never mind that the TBI Waiver, governed by the New York State Department of Health demands that the program be driven by the survivors. Loiselle and Mccooey couldn’t get me out fast enough. In fact, I once lightly touched Loiselle’s shoulder while talking with him and like a whiny little boy he ran to upper management and charge me with workplace harassment because I touched him. Not surprisingly, an investigation determined that he was, well, wrong.

As for John Mccooey, I’d call him a wolf in sheep’s clothing but I happen to like wolves and see no reason to insult them by dragging them down into the filth.

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The Scum Among Us

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Watching the plethora of lying and and stain of arrogance, deceit and greed  in the testimony today of Goldman Sachs financial executives (the latter term becoming a synonym for scum) is a sharp reminder to me that there are those among us who don’t care about their fellow human beings and will go to any lengths to convince you they do.

I watched people today and know specific people in the field of New York’s Traumatic Brain Injury Waiver without conscience who profess to have conscience, those who don’t care about the value of human life who profess to care about the value of human life. They are an insult to humanity as a whole. They are also an insult to those who honorably provide waiver services with their heart and soul. I would call on the latter to expose the former.

Like the financial executives referenced above, the scum of the waiver providers deserve to be exposed, criminally charged whenever possible, and jailed.

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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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Notes From an Advocate: Into the Light

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The best way to get rid of the dehumanization of people with disabilities is to expose it as clearly and graphically as possible.

I have told more than one in the field of human rights, I will tell the truth for you, I will not lie for you. There are a few who made the mistake of thinking this was lip service on my part. Not.

As the Kahrmann Consumer Advocacy Coalition grows its membership and hones its purpose, I can tell you that my input will include a consistent push to bring those who deny people their equal rights into the glare of the public eye.

If you deny people their equal rights, you deny them their freedom.

Our current focus is on the survivors of brain injury living in the community who are receiving services in New York from providers across the state. Many of the providers are class acts and do not deserve to have their reputations stained by those providers who are anything but class acts.

Among other things, this latter group of providers engage in what can accurately be called, community-based warehousing. They should be and will be exposed. Although the survivors are living in the community, their lives and what is welcome or not welcome in their lives is controlled by the providers.

One thing I know is this; providers who prevent the coalition from telling the survivors in their programs about the coalition will be exposed.  The question is how best to do this.

Not only does the behavior of the poisonous deny people their civil rights, it denies people their freedom. There is no excuse; certainly not even greed, no doubt the driving force behind much of this.

And so my thought, my mission, is to bring the bigotry into the light.  Fungus never does well when exposed to sunshine.

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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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