NY State Brain Injury Council in complete disarray

At first glance, the agenda for the December 10 meeting of the New York State Traumatic Brain Injury Services Coordinating Council  seems perfectly reasonable, unless, of course, you think the TBISCC should be abiding by its own by-laws and by the mandate it was given when it was  formed in 1994 by an act of the New York State Legislature.

A July 5, 2011 post in this blog accurately observes that “it doesn’t much matter (to the council) that “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.”” After all, as this blog previously reported , “more than 10 years of TBISCC meeting minutes tell us the council” has “failed to come up with any real comprehensive proposals for the DOH”at all.

Ignoring its own by-laws

Apparently ignoring the  council’s own by-laws doesn’t seem to matter either. It certainly doesn’t matter to attorneys Michael Kaplen and Judith Avner whose two-year terms as council chair and vice-chair expired long ago. The term lengths are clearly outlined in the by-laws.

To underscore the glaring disregard for the by-laws and everything the council stands for, both Kaplen’s and Avner’s terms as council members had expired eight and nine years ago respectively: Avner’s on Aug. 9, 2003, Kaplen’s on Feb. 12, 2004 (Kaplen managed recently to get himself reappointed although his current term ends in February 2013). The expiration of their terms didn’t stop either one of them from taking part in council meetings or laying claim to being the council’s leaders. It also didn’t inspire council members to stand up and say something. The fact the state’s department of health has, to date, done nothing about this, may  reflect a desire on their part part to keep the council as ineffective as possible. It is somewhat troubling to note that a DOH deputy commissioner is scheduled to report to the council on December 10, a move that can be seen as DOH support for keeping the council dysfunctional and ineffective.

To make matters worse, a recent document released by the state’s department of health, says Ms. Avner’s term on the council remains expired. One wonders if the number of council meeting cancellations this year has not, to some degree, been to give the likes of Kaplen and Avner time to get themselves reappointed. If so, it would mean that the needs of New Yorkers with brain injuries were once again being set aside for personal gain. If it is announced at the December 10 meeting that Avner has been reappointed, the preceding speculation may well have its roots in fact.

Disrespecting  NY State Legislature – among others

The fact Kaplen and Avner have been allowed to remain at the helm by their fellow council members and by the state’s department of health reflects an astonishing lack of accountability, glaring disrespect for New Yorkers with brain injuries, and, not at all incidentally, disrespect for the very state legislature that should be commended for forming the council in the first place.

Yet, a read of the agenda for the upcoming meeting reflects business as usual. Kaplen and Avner at the helm, surrounded by council members who have, so far, remained silent. They need to stop being silent and speak up. There was a time when this writer, who has long believed Kaplen simply needs to get out and then keep on going, believed Avner needed to remain on board. This has changed. Avner, who is and should not be the executive director of the Brain Injury Association of NY State (BIANYS),  needs to get out as well. Let’s not forget that, as reported last year in this blog, she voted on a measure that had a direct bearing on the BIANYS despite being warned during the meeting that her vote was a violation of the state’s public officer’s law and thus the council’s by-laws.

Knowledge gone to waste

And then there is this observation. Over the years, quite a few groups have presented valuable information to the council, including, but not limited to, OVR (Office of Vocational Rehabilitation), NYS Education Department, Office of Mental Heal, NYS Crime Victims Board, Office of Alcohol and Substance Abuse Services, OMRDD (now OPWDD), Office of Advocates for People with Disabilities, Mt. Sinai School of Medicine, NYS Division of Veterans Affairs, Unity House, NYS Coalition on Domestic Violence, and so on.  But then, nothing happens with the information! It is not shared with New Yorkers with brain injuries, it is not shared with providers, nothing. So what is the point? To inflate the egos of those who sit at the head of the table like pseudo-royalty?

Time to stand up

To those council members who truly do care, let me say that you need to stand up to anyone and anything that gets in the way of what the council was designed to be and do in the first place. I know facing Kaplen’s bully tactics and Avner’s talent for saccharin lip-service is not easy. It can even be scary for some, and I get that. But consider this, consider what those you are there to help have faced. Here is a glimpse of just few.

  • A young man in Cortland who suffered his brain injury in a car accident and, in that accident, witnessed two of his friends being decapitated.
  • A young woman so savagely beaten and raped she was left for dead.
  • A woman who went into labor joyous at the thought she was going to have a child and suffered a stroke.
  • A veteran in his early 20s who sustained his brain injury from an explosive device in Iraq.
  • A woman who, while in her early twenties, suffered a car accident and remained in a coma for more than six months. When she came out of the coma she learned her brother, who had been sitting next to her in the car had died.
  • A woman who was a teacher and on one lovely winter’s evening went for a walk with her husband. They were pulling their two children behind them on a Flexible Flyer sled. Suddenly a snowmobile driven by a  man who was drunk hit all of them. The husband escaped injury. The woman suffered a brain injury and deals daily with the challenges of being a quadriplegic. Worst of all, she will tell you, is dealing with the wrenching fact that both her children died in the accident.

So, yes, I know it can be scary. But stand up. Stand up for these folks, for yourselves, for the right every person with a brain injury (or any disability) has to be treated as equals, and to be afforded every conceivable opportunity to regain their maximum level of independence, which includes – always includes –  their right to respect and dignity.

Share your concerns

Concerned citizens can voice their concerns to NY Governor Andrew Cuomo here and, just as important, to the Commission on Quality of Care and Advocacy for Persons with Disabilities  here.

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Michael Kaplen needs to go

If I could flip a switch that would completely remove one person from the world of brain injury, Michael Kaplen would vanish.

Apparently, the fact his term on NY State’s Traumatic Brain Injury Services Coordinating Council ended in 2004, coupled with the fact elections appear to be way overdue for the position of council chair, a post he clings to like Linus clings to his blanket, means nothing. The agenda released for the TBISCC’s meeting on March 1 (see below) reveals Kaplen has no intention of addressing either of these issues. One  hopes council members and the New York State Department of Health will hold him accountable, even though doing so may result in a Kaplen hissy fit.

Living with a brain injury is a formidable challenge and then some. But we are not the only ones facing tough challenges.  The challenges the New York State Department of Health  faces in it relationship to services for New Yorkers with brain injuries are formidable to say the least. So too are the intensely formidable challenges the Brain Injury Association of NY State faces in its work. 

But here’s the difference. When I talk with BIANYS leaders like Judith Avner, the executive director, and Marie Cavallo, the president, there  are things we agree on and things we disagree on. What all three of us have in common is this; we all truly care. When I talk with Mark Kissinger, Deputy Commissioner for the DOH, and Mary Ann Anglin, a division director for the DOH, there are things we agree and disagree on. But again, what do we have in common? We all care.

I don’t believe for a millisecond that Michael Kaplen cares. I don’t think he cares about anything but Michael Kaplen. I can also tell you that if you ever want to speak with him and can’t find him, just take out a camera and he’ll appear before your eyes in a flash. One particular rather self-serving behavior of Kaplen’s provides, perhaps, a clue to what he is all about. Past BIANYS board members as well as this writer remember times at board meetings that he would go around the table and place a business card – from his law firm – at each person’s place at the table. One year at the NYS DOH’s Best Practice Conference, at a time when Kaplen was the BIANYS president, a couple of us noticed that he was going around the entire room, which seated 1,000 people if not more, placing business cards from his law firm on each and every table. To this day he may not know that I went around the room and, with the help of an ally, removed nearly all the cards.

It will surprise few, if any, that when the BIANYS board voted on a well-designed ethics policy, every board member voted in favor, except for Kaplen. He chose to abstain.

In my opinion, Kaplen is a bully. I have seen him threaten to embarrass every member of the BIANYS board of directors because there were some who had an opinion that differed from his. In fact, his behavior was so nasty,  the board had to break so some members could gather themselves. One board member, a woman with a brain injury who was at her first meeting,  was so frightened by Kaplen’s behavior she was shaking.

In one of the first TBISCC meetings I attended I watched an exchange between Kaplen and Mary Ann Anglin. Ms. Anglin was asking a series of perfectly reasonable questions. Kaplen could not have been more unpleasant or acted more put out if he’d gone to Actor’s Studio  to master the display of both conditions.

At another TBISCC meeting an American Veteran in attendance who lives with a brain injury asked a question of a presenter. The veteran was immediately pulled up short by Kaplen who sternly explained that now was not the time for him to be asking questions. When, moments later, two council members offered to give their time to the veteran so he could voice his question, Kaplen yelled at them. Like I said, he’s a bully, and like most bullies, he’s a wimp.

Kaplen has also taken his runs at me. A few years back he represented me (with significant help from another attorney behind the scenes) in a case against what was then called the NY State Crime Victims Board. On one occasion I left him a voice mail with some questions. He then left me a voice mail angrily telling me not to ask him stupid questions (this from a man whose law firm claims to act with compassion towards people with brain injuries). Then, when the judge had the case under review, I left him a message telling him that whatever the judge decided, we needed to talk to determine how best to roll out our response to the media.

Can you guess how I found out the judge ruled in our favor? A reporter called me to ask me my response to the ruling. Who told the reporter? Right. Kaplen. And so, I decided to have some fun. I left Kaplen a voice mail. In it I told him that he should be grateful that it was not 25 years earlier because had he done this back then I simply would’ve taken him outside and slapped the sh*t out of him. He later whined that I’d threatened him. No, I explained, I did not threaten you. I simply explained what would’ve happened to you 25 years ago, so, be happy; you’re a lucky man.

The world of brain injury in New York is not lucky to have Michael Kaplen in their midst. It is my hope the council will stand up to his bullying and cut him loose.  If they do, then we can all be lucky together. And then, we can all focus on the difficult challenge of supporting each and every New Yorker with a brain injury in their just quest to reach their maximum level of independence.

****

As promised:

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

875 Central Avenue, Albany, New York

(Main Conference Room)

Thursday, March 1, 2012

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome

Introduction of New Member

Review and Approval of Minutes from

September 12, 2011 Meeting

10:45am – 12:00pm New York State Five Year TBI Action Plan

Carla Williams, Deputy Director, Division of Long Term Care, NYSDOH

12:00pm – 1:15pm LUNCH (Members on their own)

1:15pm – 2:00pm Impact of MRT proposals on TBI and NHTD waivers:

Medicaid Managed Care and Repatriation of individuals served out of NYS

Jason Helgerson, Deputy Commissioner, Office of Health Insurance Programs and NYSDOH Medicaid Director

2:00pm – 2:30pm Coordinated Medicaid Managed Care Program for Individuals with TBI

Joseph Vollaro, PhD.

2:30pm – 3:00pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:00pm – 3:30pm Public Comment/Summary/Next Steps/Adjournment

A win for all NY TBI Waiver Participants

As a result of the relentless pressure brought to bear on the NY State Department of Health by the Kahrmann Advocacy Coalition, several sources across the state this week confirmed that last month the DOH  instituted a form letter that will inform TBI Waiver complainants of the results of their complaints.

The letter will identify the content of the complaint received, the fact the investigation was carried out, whether the complaint was or was not substantiated, and, if substantiated, the steps that were taken as a result. Moreover, if the complaint is about the Regional Resource Development Center – the RRDC is the agency contracted with the DOH to oversee the waiver in regions throughout the state which includes investigating complaints – or the investigation is not within the RRDC’s abilities, the complaint will be forwarded to DOH for investigation. This is a huge win for the advocacy community and for all New Yorkers who live with brain injuries.

KAC members who relentlessly pressured the DOH to institute a policy of informing complainants of the results of their complaints deserve the heartfelt gratitude of all who live with brain injuries and their loved ones. This change would not have come about were it not for their efforts.

It is also very important to make note the following. This confirmed information did not come from Deputy DOH Commissioner Mark Kissinger, nor did it come from anyone in the DOH in Albany. This is important to know for a few reasons.

  • It is very likely the last thing  the DOH in Albany wants to do is give credit to any advocacy group for this policy change.
  • It is very likely the DOH did not publicly announce the change because in doing so they would have to admit their policy of not providing complaint results has been unjust and immoral all along.
  • And just to fire a warning shot across the bow of the good ship DOH, don’t even think about linking this change to the fact the Brain Injury Association of NY State’s contract for answering the complaint line ended as of October 1. BIANYS was never the reason complainants weren’t informed of the results.  The sole responsibility for that inhumane policy rests squarely on the shoulders of the DOH.

NYS DOH considering the possibility of justice

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.

Saying no to BIANYS

I will not be speaking at the Brain Injury Association of New York State’s annual conference next month and quite a few people are asking why. 

While no one supports the BIANYS mission statement any more than I do, all of us, individual and group, need to be right-sized from time to time. All of us, simply because we are human beings, can lose sight of what is truly important and, as a result, our priorities get a bit skewed, albeit unintentionally in some cases. And that, in my view, is what has happened with BIANYS.

While there is no question that BIANYS is probably the most effective teaching voice in the state when it comes to brain injuries – it sponsors and co-sponsors events that provide enormous amounts of desperately needed information – its claim to being the state’s leading advocacy group for survivors of brain injury is simply not true. No individual and no organization can rightfully claim the mantel of advocacy yet remain publicly silent in the face of real threats to those they claim to represent.

You cannot claim the mantel of advocacy yet remain publicly silent when the state’s department of health issues a directive telling TBI Waiver case managers they cannot side with their clients at Medicaid Fair Hearings, a savage directive that all but assures the brain injury survivor will come out on the losing end.

You cannot claim the mantel of advocacy yet remain publicly silent when in 2008 it is revealed that Timothy J. Feeney, at the time the most powerful force in the TBI Waiver, is misrepresenting his credentials to brain injury survivors, their families and providers and then continue your public silence when the DOH essentially enters into another contract with Feeney  knowing full well he continues to misrepresent his credentials.

You cannot claim the mantel of advocacy yet remain publicly silent when the DOH looks to cut as many people from the waiver as possible and slash  waiver services at every available opportunity.

You cannot claim the mantel of advocacy yet remain publicly silent when the DOH all but ignores an alliance of TBI Waiver providers who are simply asking for uniform billing procedures and fair treatment, when the DOH’s utter – and I think intentional – mismanagement of the TBI Waiver has resulted in providers dropping out across the state, a reality that wounds the lives of many survivors of brain injuries.

It is hard, if not impossible, for brain injury survivors, their families, and the dwindling number of providers to  believe BIANYS is an advocacy organization when the aforementioned are under assault and BIANYS is nowhere to be found. It is true that BIANYS has a group of remarkably committed staff known as FACTS Coordinators who do advocate, but because they are paid through a grant from OPWDD, they are only allowed to advocate for those who sustained their brain injury before the age of 21 and their advocacy efforts do not extend to the arena of public policy and DOH directives.

I know, from nearly a half dozen sources, that nearly all the FACTS Coordinators were and are utterly disgusted with the Feeney situation, but their honorable and heartfelt opinions were not enough to lead BIANYS leadership to take a public stand

Having said all this, the rather monumental  flaw in the BIANYS advocacy claim is not my reason for saying no to their invitation to speak at this year’s conference. My reason for saying no revolves around the nature of the speech they asked for and their failure to support five BIANYS support groups. The circumstances surrounding the invitation to speak are somewhat suspect as well. When the lack of an invitation to facilitate a workshop at the conference began to get noticed, I was invited to speak the second day of the conference to motivate attendees to pull together and join BIANYS.

Many feel the absence of a workshop invitation being offered to me this year was a sign BIANYS is  distancing itself from me, primarily because I openly hold the DOH accountable for their treatment of brain injury survivors and BIANYS gets a sizeable grant from the DOH.  While BIANYS denies this, perception is often more powerful than fact. I know of no instance in which BIANYS has publicly disagreed with or challenged a DOH decision, leaving the perception that DOH is calling the shots on both fronts.

For me, an attending reality that revolves around a weekly Albany support group I voluntarily facilitate for BIANYS was the drop that overflowed the cup. When I moved last November from the outskirts of Albany to my current home I was not about to abandon the Saturday groups. However, my weekly commute went from 50 miles to 150 miles, 600 miles a month. Given that I am on a fixed income,  BIANYS was asked to help with mileage reimbursement. It is worth noting that volunteers are typically reimbursed for their expenses because most groups want to keep their volunteers and the reimbursement is a valid business expense.

BIANYS reimburses at 50 cents a mile which, if applied to 600 miles, would be $300 a month. BIANYS said it was low on funds and we suggested they cut the number in half and help us with $150 a month. Finally, after receiving a number of emails from group members, they agreed to $150 a month for a three-month period at which time, they said, they would re-evaluate the situation. Given the heads up that the three months was ending, followed by another email campaign from group members, BIANYS suggested that the matter be handed over to a workgroup for study. BIANYS leadership then announced they could not make the decision because it was a  matter that needed to be brought before the board of directors for review. They’d never said this before.

I sent them an email saying that in good conscience I could not stand in front of several hundred survivors, family members and providers and urge them to join BIANYS because BIANYS truly cares while at the same time knowing that BIANYS leadership was, supportive words aside, not inclined to help five support groups with mileage cost. The importance of support groups in the lives of survivors of brain injury, their families and members of the community is huge. There is something unseemly about claiming support groups as your own while at the same time not supporting them. I told BIANYS leadership  if they agreed to help these groups I’d be happy to speak at their conference.

They have not agreed to help and I will not be speaking.

On the positive side, BIANYS leadership and I will be meeting at my home sometime soon after the conference and it is my sincere hope that all these matters will be resolved and, if they are, I’ll be present and supportive for sure at the 2012 conference.