Tag Archives: BIANYS

Working against Hypocrisy in NY State

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T.S. Elliot was right when he said: “There’s no greater heresy than to do the right thing for the wrong reasons.”

In the world of advocacy there is no greater heresy than hypocrisy, especially when it comes from those who say the right things for the wrong reasons, self-aggrandizement and the ability to feel powerful. There is also no greater heresy than those who, when asked for the specifics of their decisions and actions, engage in double talk, spin, or, in some cases, simply say nothing.

And so it is that I and others have been emailing with the Brain Injury Association of NY State in the hopes BIANYS will, for the first time in this writer’s memory, permit an open-dialogue forum online for its members. This is something quite a few members (including former BIANYS board members) have asked for. The request  was prompted by the fact that a long-term BIANYS member with a brain injury resigned as a BIANYS support group facilitator in part because BIANYS leadership, he explained, might hear that those of us with brain injuries are talking but they don’t really listen to what we are saying.

There is no argument that communication could use some improvement, not just between the members and BIANYS leadership, but among members statewide.

Thus far we have suggest an online message board. BIANYS, represented in the email exchanges by its board president, Marie Cavallo, said they don’t have time for a message board but would consider it in the future. It was then suggested that BIANYS open its Facebook pages so those who “like” the page can initiate comments and communicated with each other. At first the answer to this was no because, Ms. Cavallo explained, in the past providers has used an open FB format to advertise. It was pointed out the FB permits the user to block those that abuse the page. Ms. Cavallo  then said opening the FB was a possibility but there was concern doing so would be a drain on staff’s time.  BIA from New Jersey, Massachusetts, Connecticut and many others have open FB pages.

Transparency, an openness to communication and sensitivity to membership are critical components to any advocacy organization.

It is important to note that Judith Avner, the executive director of BIANYS, won’t take part in these discussions. At one point Ms. Cavallo explained this is because she, as president, represents BIANYS, but to whom? To its members? Are the members really seen as being separate from the organization? An unsettling notion at best. After all, Ms. Avner speaks at numerous conferences, fund raisers, speaks to the board, but, not, it seems, to the members. BIANYS financial statements reveal Ms. Avner is paid roughly $2,000 a week.

I don’t envy Ms. Cavallo her position. In all the years I’ve known her it is clear to me she has a good heart and genuinely cares. The question is, has she found herself in the position of, when it comes down to it, representing Ms. Avner.

We’ve asked other questions as well and are looking forward to the answers. Two of them are:

  • How many persons with a brain injury does BIANYS currently employ and how many persons with a brain injury has BIANYS employed since Ms. Avner took the helm on or about 1987?
  • What is BIANYS specifically advocating for or against, how are members and the public informed of these specifics, and how are the members included in determining advocacy issues?

Not answering the questions couple with an executive director who refuses to take part in the discussion carries the bitter taste of hypocrisy.

Let’s hope the answers come soon so we can all work together.

Proposal for NY State Brain Injury Waiver: Elephant #2: NYS Traumatic Brain Injury Services Coordinating Council: the Challenge & Remedy

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The Challenge

Formed in 1994 by an act of the New York State Legislature, The 19-member NY State Traumatic Brain Injury Services Coordinating Council is “charged with recommending to the (NY State) department (of health) long-range objectives, goals and priorities”  for New Yorkers with brain injuries. The record shows it has done this. This is not to say there have not and are not council members who, if afforded the  chance to work with effective leadership, who care.

The problem with the TBISCC rests on two primary fronts. It’s leadership and the ongoing presence of blatant conflict of interest linked to some council members.

First, the leadership. Over its history the council has had two chairs: Charles Wolf, the former head of the Long Island Head Injury Association who left that post in disgrace, and, Michael Kaplen, an attorney whose practice focuses on landing people with brain injuries as clients and is the past president of the Brain Injury Association of NY State. Kaplen was a BIANYS board member during some of his time time as the council’s chair. Judith Avner, the executive director BIANYS has been co-chair for each, and therein lies the tip of the conflict of interest iceberg. BIANYS gets a large grant from the DOH.

A review of council minutes from its inception 18 years ago reveals not one single proposal designed to assist the department of health in developing and improving the state’s Traumatic Brain Injury (TBI) Waiver, established in 1995. Moreover, the fact that anyone from BIANYS or anyone who works for a waiver provider is on the council as a voting member wouldn’t pass the sniff test of even the most poorly written code of ethics. Moreover the council’s by-laws say: “Members shall refrain from participating in voting procedures where a potential conflict of interest may exist as defined under the Public Officers Law.” 

This has not stopped council members from blatantly engaging from conflict of interest even when they were warned not to. According to council’s own minutes for a September 16, 2010 council meeting  ex-officio council member Nick Rose warned Ms. Avner not to violate the Public Officers Law by voting on a proposed trust fund that would be raised from a surcharge on state vehicle registrations because “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, Mr. Avner and voted for the fund anyway, even though doing was clearly a conflict of interest according to the New York’s Public Officers Law.

BIANYS has a history of hands-off when it comes to the DOH. As a BIANYS member and a former board member it has been made clear to BIANYS staff, by Ms. Avner, that they are not to tamper with DOH related issues, i.e., the waiver. Is just a coincidence that the council offered to constructive proposal to the DOH regarding the waiver?

Left unaddressed,  blatant conflict of interest or the perception of conflict interest undermines the ability of this or any council to do the work it is called upon to do.

The fact BIANYS has voting members on the TBISCC is particularly disturbing. I doubt it is a coincidence that both groups, BIANYS and the TBISCC, were stone silent when New Yorkers with brain injuries were and still are going through some tough times. Neither group said anything when the DOH decided waiver providers could not support waiver participants at Medicaid Fair Hearings. Neither made an iota of effort to make sure waiver participants were informed of the results of complaints they filed. It was only last year that the DOH, to its credit, changed this policy. The point is, BIANYS members have had a role in the TBISCC and, more specifically, the TBISCC’s leadership virtually from the council’s beginning. As noted earlier, Ms. Avner was co-chair under both council chairs and Mr. Kaplen is past BIANYS president.

Does anyone with any degree of common sense in their possession think it is merely a coincidence that neither BIANYS or council says word one to the DOH about the waiver?

It is also worth noting that, until this blog exposed it, Ms. Avner’s and Mr. Kaplen’s terms on the council had expired eight and seven years ago respectfully. Apparently, Mr. Kaplen has been reappointed by a, one would hope, misinformed Speaker of the New York State Assembly, Sheldon Silver. I am not sure about Ms. Avner’s status. I am sure there terms as chair and co-chair ended a long time ago.

The bottom line is this. The TBISCC can be a positive and constructive force in the lives of New Yorkers with brain injuries. Mr. Kaplen should remove himself from the council. Barring that, he should certainly refrain from seeking the chair or co-chair position. Mr. Kaplen’s history strongly indicates that unless he can be the center of attention, his participation in council activities will rapidly decline. And,  his behavior reflects an individual who has no business being on a council like this. His disdain for individuals with brain injuries and, on more than one occasion, his colleagues on the council ought to send him packing.  I remember attending a council meeting some time ago when Mr. Kaplen responded to a series of utterly reasonable questions posed to him by Mary Ann Anglin, the DOH Director of the Division of Home & Community Based Care Services, with a level of nasty defensiveness that ought to have embarrassed him and, it must be said, did nothing to ruffle or intimidate Ms. Anglin.

In must be said too that under Mr. Kaplen’s leadership, council committees have all but ceased to exist, and executive sessions, rarely, if ever, happen. Mr. Kaplen’s rather self-absorbed dictatorial streak has run both off the road, and, as co-chair, Ms. Avner has either supported this or been ineffective in doing anything about it.

Kaplen should go. I’ve heard first hand reports of how he has yelled at people in person and on the phone, sometimes leaving them in tears, and, as this blog reported, I was present at a BIANYS board meeting when he threatened everyone to embarrass everyone at the table.

However, Ms. Avner and the presence of BIANYS, whose presence on the council needs tweaking,  should not be sent packing.

 

The Remedy

The relationship between the TBISCC and the DOH does not have to be adversarial. The TBISCC is there to recommend “to the (NY State) department (of health) long-range objectives, goals and priorities” for New Yorkers with brain injuries. Then do so!

The DOH has plenty on its plate as it is. One would think it would appreciate a sincere effort by the council to develop and propose objectives, goals and priorities. Everyone with any semblance of knowledge about the state’s TBI Waiver has known for years the lack of training in the brain is a real problem, yet the TBISCC has done nothing? Not a single idea presented? Waiver providers throughout the state have made it clear – and made it clear to the TBISCC – that the requirements for billing for services and other rules are not uniform throughout the state. There is one set of rules in one region, another set of rules in another. The council has offered nothing.

The problems with the  council are not because it is absent members – voting and non-voting – who care. It is, in my view, because the only two council chairs, Messrs.’ Kaplen and Wolf were all about Messrs.’ Kaplen and Wolf, and because of the blatant areas of conflict of interest just described.

Several things must happen in order for the TBISCC to be effective. If they do, the TBISCC can be a truly healthy influence on the lives of New Yorkers with brain injuries and a well-deserved support for the state’s DOH.

1) All areas of conflict of interest must be immediately addressed and remedied. No member of BIANYS and no one working for a TBI Waiver Program should be voting members of the council. However, both BIANYS and the providers, represented, for example, by the Providers Alliance and other such groups, should, like various state agencies, OASAS (Office of Alcohol and Substance Abuse Services) and the CQC (Commission on the Quality of Care for People with Disabilities) to name two, should have a seat at the table as non-voting members. Advocacy groups should be at the table as well. All have important and relevant knowledge to share.

2) Even if only symbolic in nature, the council should vote to uphold its own by-laws.

3) The council would be well-served to consider itself a working committee and discuss matters at hand during their meetings rather than have each meeting as a platform for presentation from outside groups who are not relevant to what is going on with, for example, the TBI Waiver.

4) The council would be wise to begin its own blog – free of cost at blogger.com – and use that format to announce meetings, publish proposals, and report on the response to those proposals.

5) The council would be wise to invite neuropsychologists and neurologists and physiatrists, not to mention people with brain injuries and their friends and families,  to get there input so council proposals would be better informed.

6) Last, and not least, and perhaps most obvious, the council is lacking in members who have brain injuries and family members who have people in their families with brain injuries.

 

Please distribute to all interested parties

 

Next: Elephant #3 Lack of effective oversight of  TBI Waiver

A proposal for NY State’s TBI Waiver: Elephant #1: Lack of knowledge about the brain: a Remedy

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We have thus far identified the four parts of this proposal. In short they are the three elephants in the room and a summation with final thoughts.

Part 1:  Elephant #1: Lack of knowledge about the brain

Part 2:  New York State Traumatic Brain Injury Services Coordinating Council

Part 3: Elephant #3: Lack of effective oversight of those providing services to those on the waiver, a problem which is severely exacerbated by Elephant #1

Part 4: Summation and final thoughts

The proposal format for Elephant #1 is being published in two parts. The first part, the outlining of the problem or challenge, was published yesterday, and this is the second part, a proposed remedy to the issues outlined in part 1. I had thought elephants #2 and #3 would need to be addressed in two parts, but they may be able to be successfully addressed in one part. We’ll see.

Let me say that not for a minute do I think the remedy, as set forth here, is in any way perfect nor am I claiming that it can’t be improved on. It can, and it should be. What I believe is that the remedy I am about to describe here is a solid step in the right direction and, if it is applied, it will, in addition to dramatically benefitting the lives of those men and women with brain injuries currently on New Yorks TBI (Traumatic Brain Injury) Waiver and the lives of future waiver participants, save Medicaid dollars, a lot of them, to put it mildly.

Thus far I have, I hope, successfully outlined some salient points. First, as the current waiver molds into its new form, decision makers must be very careful not to discard the plethora of waiver staff and others (RRDCs) who have, over time, developed an understanding of the brain and brain injury that is rare in general and rare in the over-worked folds of managed care companies. Second, anyone providing and or monitoring/regulating waiver services must be trained and deserves to be trained to a level of expertise that is currently sorely lacking. Third, there can be no doubt that truly well-trained waiver staff, RRDCs and DOH staff, will create a program and delivery of services that will result far more positive outcomes and save money to boot. Brain Injury 101, which is offered by the Brain Injury Association of New York State (BIANYS) free of charge, is excellent for those seeking a cursory overview of the brain, but it does not provide the level of knowledge needed and deserved by those providing waiver services nor those overseeing and regulating them.

However, BIANYS has staff qualified to train individuals to become a CBIS (Certified Brain Injury Specialist) or a CBIST (Certified Brain Injury Specialist Trainer). The CBIST is qualified to train people to the CBIS level of expertise. Both CBIS and CBIST are offerings linked to ACBIS, the Academy of Certified Brain Injury Specialists.

Now, I am anything but oblivious to the fact that Medicaid dollars, any dollars for that matter, are in short supply. There is a fee for each person sent for CBIS or CBIST training, something in the neighborhood of $300 per individual. Even if a reimbursement rate for staff training is instituted, and it must be if this program is ever to reach its full potential and save money in the process, $300 per individual is far too costly for providers. So, here is what I propose.

  • Identify some key staff members who meet the criteria for becoming CBISTs as set forth by ACBIS, and send them for the training.
  • Once they are CBISTs, they are then able to train staff to a CBIS level of expertise. No, ACBIS will not be issuing certificates because no fees were paid, but yes, staff will be at a significantly higher level of expertise and, to my knowledge, there is nothing preventing providers or the RRDCs or the DOH from issuing certificates of achievement to those staff members who have reached the CBIS level of expertise.

Were this proposal to be enacted, waiver programs would operate at a markedly higher level of expertise, waiver participants would benefit greatly, and, in the long run, would require less services to maintain and increase their independence, which is, after all, the point of the waiver in the first place.

Now, I think at some point the DOH must make this level of training mandatory, but not until one of two things happen. There is either a reimbursement rate instituted for staff training that, I have neglected to say until now, must be relevant to those who live with brain injuries, or, there is a higher reimbursement rate awarded for waiver services once the training is successfully completed.

 

Please distribute to all interested parties

 

Next: Elephant #2: New York State Traumatic Brain Injury Services Coordinating Council

An Update for My Readers

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Since the birth of this blog in late 2006 this has been the longest stretch of “silence” on my part. I thought it might be a good idea to bring regular blog readers (there are more than 1,500 of you) up to speed.

As some of you know already, I recently moved to Berkshire County in Western Massachusetts. I am steadfastly going through box after box of my belongings, deciding what to keep and what to toss. It is astonishing how much stuff one accumulates over the years. I work on this culling process on a daily basis and, after careful calculation, have determined that I will complete it on April 15, 2032, at 2:07 p.m.

I have several times been tempted to write about New York State Governor Andrew Cuomo’s proposed state agency that would, or so the governor says, pursue allegations of abuse of people with disabilities in the care of the state. In my view the proposal is little more than a headline grabber intended to make the governor look good – or so he hopes. It is especially troubling when the 100 or so companies that came out in support of the proposal are, for the most part, the very companies that would be overseen by the agency. Disability rights advocate Michael Carey is spot on accurate when he said the governor’s proposal was an example of the fox guarding the henhouse. Carey’s 13-year-old son, Jonathan, who lived with autism, was killed while in the care of the state.

I advocated for people with brain injuries for years in New York State and, until recently, the state never informed people with brain injuries what the results of their complaints were. This withholding of information was by design, not by happenstance, and it serves to underscore Mr. Carey’s point.

If New York or any state is sincere about tracking allegations of abuse for those under state care, they’ll make sure it is done by an independent group. The fact the proposed agency would be a state agency serves to document the insincerity of the proposal.

Here’s a suggestion. If New York State wants to get serious about protecting people with disability in its care, an independent entity like the Center for Disability Rights out of Rochester might well be the way to go.

Enough on this – for now.

I’ve been back on my bike for the first time in a long time and it feels good. I live near Mount Greylock. At nearly 3,500 feet it is the tallest peak in Massachusetts and there is a road filled with switchbacks that winds its way to the top. The climb is about six and a half miles and I have every intention of biking that before winter arrives. I also have my eyes on a bike ride of about 50 miles to help raise funds for the Western Massachusetts Food Bank.

And, of course, I am reading, voraciously as always. I do not think I would have lived as long as I have without books. I mean this sincerely. They have provided refuge for me during difficult times and vacations for me during good times.

I’ve received a emails from people lamenting the fact I was not at this years conference hosted by the Brain Injury Association of NY State. I was not invited. BIANYS leadership does not like being held accountable, at least not publicly, and certainly not by me. There are good people on the BIANYS board and I think those at the head of BIANYS are essentially good people. But they need to humble up and realize that the world, meaning, in this case, the association, does not revolve around them.

I can remember some time ago when BIANYS leadership, to its credit, had a number of us who facilitated support groups meet to discuss ways of improving and growing the support groups. Nothing came of it. In fact, when I suggested that BIANYS take a page from the Brain Injury Association of Massachusetts and run background checks on group facilitators, the idea was immediately shot down by Judy Avner, the executive director, because, she said, it would be too costly. I pointed out, to no avail, that were a group facilitator to do something truly out of line somewhere down the road, not only would group members suffer, but, when it came to light that BIANYS willfully chose not to run background checks on group facilitators, things would be far more costly.

Enough on this – for now.

Those of you who know me and know my own struggles with my brain injury and PTSD will be happy to know I am getting out of the house more than I was a few months ago. I am, like you are, a work in progress.

It has been good writing this rather rambling missive to you all. I wish I could truly tell my regular readers how very grateful I am to you, and how humbling it is for me to know you read my writing on a regular basis. To those passing by, thank you for the visit. And to all of you, I hope life is treating you well, and always, always, remember to live.

And yes, I’ll be back.

Michael Kaplen needs to go

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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