Tag Archives: tbiscc

End the Kaplen-Avner Show

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It will surprise no one to learn that New York State’s Traumatic Brain Injury Services Coordinating Council and  Brain Injury Association (I am almost repeating myself) are ignoring requests to look into the bogus complaint line for the TBI Waiver and investigate a state Department of Health’s directive blocking waiver providers from advocating for their clients at Medicaid Fair Hearings. It is sadly not surprising that the requests had to be made in the first place.

As readers of this blog will recall, the DOH never tells complainants the outcomes of their complaints. BIANYS, under the leadership of Judith Avner and, historically, of Michael Kaplen, entered into a contract with the DOH to answer complaint line calls knowing full well complainants are never given the results.

As long as council and BIANYS leadership are not held accountable by their members and, in the case of BIANYS, the board of directors, nothing will change, and the lives of brain-injured individuals in the state will continue to suffer for it.

Why are the requests being ignored? Because, if one agrees that actions speak louder than words, the leadership of the council and  the brain injury association (again I am almost repeating myself) don’t really care.  In fact, a July 5 publication in this blog reveals that the TBISCC has failed miserably to live up to its purpose which is, in short, to provide proposals to the DOH to best serve brain injury survivors in the state.  The only thing that falls into the category of a proposal is a proposed trust for brain injury survivors in the state that would also benefit the brain injury association.  Avner displayed some of her true colors by voting for the trust fund anyway even though doing so clearly violated the public officer’s law which council bylaws require members to follow.

Council chair Michael Kaplen’s penchant for self-aggrandizement  and adding cases to his legal coffers is well known. I remember a yearly best-practice brain injury conference hosted by the state’s Department of Health (they were around 2003 or 2004 when some of us noticed that Kaplen had deposited business cards from his law firm on every table in the conference; at the time he was president of the state’s brain injury association and then and now Judith Avner was the association’s executive director. A few of us went around the room and removed them.

Avner, on the other hand, is dazzlingly skilled at lip service. I’ve walked away from meetings with her thinking brain injury survivors are lucky she is around only to realize (at greater speed as the years have passed) that she didn’t commit to a thing, didn’t agree to a thing, and, above all, made sure BIANYS did nothing that even remotely held the DOH accountable.

One would like to think Avner and Kaplen would, in their heart of hearts, feel guilty for repeatedly letting brain-injured individuals down; but feelings like this require a conscience, something both  seem to be running short on.

As a friend of mine said recently, there needs to be a grassroots uprising in order to address the Kaplen-Avner show and, let us not forget the non-responsive Maribeth Gnozzio of DOH Fame. Perhaps it might be interesting to conduct non-violent protests at the homes of all three. It’s been too long since protests like this have surfaced in Chappaqua, Delmar and Tannersville.

Here is the agenda for the TBISCC Council meeting  September 12.

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

Empire State Plaza, NYS Museum Meeting Room A

(Concourse level of NYS Museum)

Monday, September 12, 2011

10:30 AM – 4:00 PM

AGENDA

10:30am – 10:45am Welcome

Review and Approval of Minutes from June 20, 2011 Meeting

10:45am – 11:45am Kristen Dams-O’Connor, Ph.D., Screening for Concussion in Collegiate Athletes, Brain Injury Research Center, Mt. Sinai Medical Center

11:45am – 12:45pm Brian Greenwald, M.D., Medical Director, Brain Injury Rehabilitation Program, Mt. Sinai Medical Center

12:45pm – 1:15pm LUNCH (members on their own)

1:15pm – 2:15pm Todd Nelson, Concussion Management Information/Guidelines, New York State Public High School Athletic Association

2:15pm – 3:15pm Discussion of Concussion Management and Awareness Act  (S. 3953-B)

3:15pm – 3:45pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:45pm – 4:00pm Public Comment/Summary/Next Steps/Adjournment

 

Is the Kaplen-Avner Show the problem?

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It is revealing but not surprising that the New York’s Brain Injury Association – not the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) or Department of Health – is announcing what the next TBISCC meeting will be about.  It is no secret that the leadership of all three groups are, figuratively speaking, in bed together. It is also no coincidence that Michael Kaplen and Judith Avner lead the council and both, until recently, led BIANYS. Avner is still the BIANYS executive director.

According to the BIANYS website, “The September meeting will be dedicated to a discussion of the Concussion Management and Awareness Act (S. 3953-B) which passed the legislature at the end of the session. Discussion will focus on recommendations on the implementation of that legislation to the Commissioner of the Department of Health.” The passage of the act is, without question, a positive step forward. For the council to provide recommendations is all well and good and certainly appropriate. How is it, though, that BIANYS knows, before it is a announced

It is also no secret that little if any evidence exists of BIANYS or TBISCC leadership ever taking the DOH to task for some of its rather brutal treatment of brain injury survivors and, not incidentally, its rather brutal treatment those who provide services to brain injury survivors. New York’s Brain Injury Providers Alliance, for example, has, for some time now, been rightfully pleading with the DOH for a statewide uniform billing policy and they are still waiting.

What is not appropriate and what is an act of disloyalty pure and simple to New York’s brain-injured individuals is the fact TBISCC and BIANYS leadership will do anything but hold DOH accountable.

Some examples:

  • The council was asked to look into the blatant injustice of the state’s TBI Waiver complaint line managed jointly by the DOH and BIANYS. Complainants are never told the outcomes of their complaints, a lack of due process by any measure.
  • With only one or two exceptions, the council has tip-toed around the fact the DOH has told TBI Waiver providers they cannot side with complainants at Medicaid Fair Hearings. BIANYS has completely avoided addressing this issue.
  • The TBISCC and BIANYS remain dead silent even though a recent article in the Albany Times Union  and this blog have reported DOH’s effort to use any excuse under the sun to discontinue housing subsidies for brain-brain injured individuals even when doing so would leave them homeless and jeopardize their lives. 

One question that needs to be asked is this. Is the Kaplen-Avner show the problem? A step in the right direction would be for  Kaplen and Avner to step down, then we would find out.

 

Keeping it simple

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Many of us, and I am no exception, get so caught up in the perpetual swirl of life’s struggles that we forget to relax, breathe, keep things simple. We forget to live.

Whatever the struggles we each face, either by choice or by unavoidable circumstance, none deserve so much sway over our lives that we lose sight of what is truly wonderful about life, and what wonder is there for us to experience, even with the struggles.

As an advocate, primarily in the arena of brain injury, there is so much dysfunction and bigotry to address I can, and at times have, found myself doing little else, save for reading: a habit that has sustained me through the darkest times, that’s for sure. I live in state with a department of health packed with people who, with some very real exceptions, couldn’t care less about those who live with a brain injury. I live in a state with a brain injury council, called the Traumatic Brain Injury Services Coordinating Council, that has pretty much failed to live up to its stated purpose from day one. I live in a state with a brain injury association that, on the one hand is a remarkable and desperately needed educational presence on brain injury, and, on the other hand, claims to be an advocacy agency when it is not.

In short, the issues with all of the above could consume anyone whose instinct is to promote equal rights.

It is clear to me that being consumed by any one thing, even when honorable, is not healthy, and, in the long run, makes one less effective when it comes to this one thing in the first place.

When you think about it, what is advocacy for equal rights actually about? It’s about the right of every individual to be who they really are in life,  safely, equally.  In life means the ability to live life. To fall in love and walk down the street holding hands with the person you love. It means being able to go out for coffee or a meal or read a book. It means being able to watch movies, birds, people, sunsets, sunrises, thunderstorms, snowfalls, oceans, rivers, streams. It means being able to listen to music, laughter, wind, thunder, conversation, and so on. It means experiencing life, which none of us can do as well as we have a right to do if we are consumed by any one thing.

Keeping it simple so much means staying in the moment you’re in. As a friend of mine recently gone from this life said to me: “Remember, Peter, the moment you’re in is the only place you have to be.”

Is the problem NY’s brain injury leadership, the DOH, or both?

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The leadership of New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council seems determined not to hold the state’s Department of Health accountable for anything.

Is it only a coincidence that the same people have led and, in some respects, still lead both groups?

For years attorneys Michael Kaplen and Judith Avner led BIANYS and now they head up the council.

Avner was Kaplen’s pick for assistant council chair even though she is still the BIANYS executive director. When the two attorneys led BIANYS, Kaplen was the board president. Moreover, Kaplen was a BIANYS board member at the same time he was the council’s chair. It is worth noting too that BIANYS relies on a sizeable grant from the DOH in order to operate, a reality that makes Avner’s post on the council high-risk for potential conflict of interest and, given his past relationship with BIANYS, Kaplen faces the same risk.

Violating NY Public Officers Law

Conflict of interest did not stop Kaplen or Avner from voting for a trust fund that would have clearly benefitted BIANYS. Never mind that during a September 16, 2010 council meeting they were warned against doing so by ex-officio council member Nick Rose. The trust fund was to benefit brain-injured individuals who did not qualify for the state’s TBI Waiver and BIANYS because, according to council minutes, “the Brain Injury Association of NYS ( was to) be contracted (with) to assist with the development”of the trust fund and, it is said, receive a financial percentage of the fund itself.

Despite the warning, Avner and Kaplen voted for the fund anyway, even though doing so appeared to put both in violation of New York’s Public Officers Law.  The council’s by-laws say council “members shall refrain from voting procedures in instances where a conflict of interest  may exist as defined by the Public Officers Law.”

DOH Getting Carte Blanche

As an earlier blog post points out that in its lifetime the council has never really offered so much as a single proposal to the DOH regarding what can be done to help brain-injured individuals in the state, proposals like these being the very reason they were formed in the first place. Similarly, throughout its years with Avner-Kaplen duo at the helm, BIANYS never publically held the DOH accountable for anything, a pattern that has not changed under the current BIANYS leadership duo of Avner and Marie Cavallo. Cavallo is the BIANYS board president. Another recent blog post outlines some of the issues BIANYS refuses to address publically even though they have been repeatedly asked to by this writer.

The fact of the matter is one would be hard pressed to find a single example of either group holding the DOH publically accountable for its actions, including its recent attempt to throw a 66-year-old woman with a brain injury off the waiver and charge her $24,000 in the process. It is worth noting too that in an article by Rick Karlin in today’s Albany Times Union regarding this injustice there is no mention of BIANYS. BIANYS had plenty of time to release a statement to the media because I told them in plenty of time and asked them in writing to take a public stance; a written request that was ignored by Avner and Cavallo, yet both will tell you with a straight face that BIANYS is an advocacy group.

Is the reluctance to hold the DOH accountable  a matter of morally bankrupt leadership in both groups, the power of the DOH, or a combination of both?

The Bottom Line

Managing life with a brain injury is a formidable enough challenge as it is. It should not be all the more formidable because groups like BIANYS, TBISCC, and the DOH reveal an across the board penchant for lip service steeped in moral bankruptcy. Something needs to be done. Maybe step one is for the leadership of all three to step down.

NYS DOH considering the possibility of justice

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The NYS Department of Health says it will consider telling those who file complaints related to the state’s TBI Waiver  – primarily people with disabilities who live with brain injuries -  the results of their complaints. Currently complainants are never told. In fact, several RRDCs (Regional Resource Development Centers) throughout the state say they’ve been directed by DOH not to tell complainants the outcome of their complaints. RRDCs are agencies under contract with DOH to oversee waiver providers and participants.

On June 30th this writer sent an email to NYS Deputy DOH Commissioner Mark Kissinger which read, in part, “On behalf of Kahrmann Advocacy Coalition members and all those who care about brain injury survivors in the state, I am asking you to immediately issue a directive requiring that those who file complaints related to the TBI Waiver are to be informed of the results of their complaint within 60 days of filing the complaint.  Right now complainants are never informed of the outcome of their complaints – never.”

Kissinger responded via email saying, “I will have staff look into your suggestion and get back to you within a reasonable period of time.” I’ve heard nothing yet. It takes more than two weeks to decide if justice should be served?

I wonder what DOH staff have to look into? Are people really sitting around a table somewhere wondering whether complainants should be told the outcomes of their complaints? Who would argue that they shouldn’t? Well, the DOH for one.  Groups like the state’s Traumatic Brain Injury Services Coordinating Council and the Brain Injury Association of NY State need to publically speak up. Any and all groups who say they are committed to the notion that people with disabilities deserve equal justice under the law and equality on the regulatory front should be outraged, and outraged so others notice. Silence is not an option for them. To remain silent is to support the DOH’s continued assault on the rights of people who live with brain injuries.

If you want to let DOH know your feelings on this, you can write to Mark Kissinger at mlk15@health.state.ny.us or call his office at 518-402-5673.