Category Archives: TBI Waiver

NY State Brain Injury Council in complete disarray

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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.

Time to say goodbye to BIANYS’ Avner

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Until and unless the board of the Brain Injury Association of NY State takes action, BIANYS will remain an insular presence controlled by a dictatorial executive director who should resign or be fired.

It seems clear that executive director Judith Avner has no real interest in truly interacting with or listening to BIANYS members, including those of us who live with brain injuries. She  shuts down  any and all attempts to improve transparency, maintains a dictatorial grip on the BIANYS board, website, Facebook page,  and newsletter, and has the board president marching to her orders. However, Ms. Avner is all too happy to ask anyone and everyone to donate money, appear at fundraisers, and have her picture taken with any and all celebrities who support BIANYS, mistakenly thinking BIANYS does what Ms. Avner says it does. I suspect it is safe to assume Ms. Avner is diligent about accepting her roughly $2,000 a week paycheck.

Save for its remaining valiant support group facilitators (volunteers all) and a small group of underpaid staff, most of whom are equally valiant in their work with those who sustained brain injuries in their youth, not as adults,  BIANYS has become little more than window dressing thanks to Ms. Avner, a seemingly anemic board, and a cluster of sycophants.

It’s hard enough managing life with a brain injury. It’s even harder when those who claim to care about you and say they advocate for you do anything but care and advocate, unless, of course, you count lip service. 

Over the past few weeks several BIANYS members and former BIANYS board members have been involved in series of email exchanges with BIANYS seeking answers to several questions and offering to help, not hurt, BIANYS, if, in fact, the answers are not all one would hope they’d be. While Ms. Avner will say all the things one would hope to hear at fundraisers and  BIANYS conferences, she refuses to even respond to any of the emails, some of which asked BIANYS to create an online forum for open discussion, whether that be a message board or the discussion component of their FB page.

Instead, the task of responding was given to Marie Cavallo, the BIANYS board president, a volunteer. As one person who read the email exchanges observed: “It looks like Marie’s lost her mojo.” Ms. Cavallo said BIANYS rejected the notion of a message board because it would be too time consuming. She said BIANYS rejected opening the FB page to discussion because, she claimed, healthcare providers had used the page to tout their wares. When it was pointed out that FB allows one to block companies and individuals, the next excuse she offered for nixing the FB idea was it’s too time consuming. Then, in what gave us all a flutter of hope, she said she would talk with BIANYS staff about opening the FB page (One wonders why it’s the board president and not the executive director talking with staff when the executive director is their supervisor. Perhaps Ms. Avner doesn’t have time for staff either.). Since then Ms. Cavallo has chosen to walk in lockstep with Ms. Avner and has ignored our emails and, needless to say, their FB page is still closed to discussion.

You may be wondering what were the questions we asked. Here’s a taste: Can you tell us how BIANYS informs its membership what it is advocating for? How does BIANYS decide what it will advocate for and how does BIANYS include its members in the discussion? (At one point Ms. Cavallo pointed out that BIANYS issues an annual report and publishes newsletters on its website. All true. But you’ve got a better chance of finding a needle in the Sahara desert than you do of finding word-one about BIANYS’ advocacy in the annuals reports or newsletters). We also asked how many person with a brain injury does BIANYS currently employ and how many has BIANYS employed since Ms. Avner took the helm on or about 1987. No answer.

Lest you think any of us are out to do anything other than hold BIANYS accountable let me say that in our emails we offered to help and support BIANYS in identifying individuals with brain injuries for employment and issues of advocacy. No response.

Lastly (for now), there are times the choices we make in life reveal our true colors. Several years ago when I was on the BIANYS board a fellow board member died. This board member, like me lived with a brain injury and had been in poor health for some time. However, poor health or not,  this person’s heartfelt commitment to BIANYS and devotion to those of us who live with brain injuries and our loves ones was unflinching. Had anyone on that board suffered a calamity in his or her life this person, poor health or not, would be there for them come hell or high water. Yet, when this good and decent human being left this world, Ms. Avner and Ms. Cavallo were no shows at the memorial service.

And then there’s this. At the first board meeting following this person’s death, Ms. Cavallo announced that Ms. Avner (who was sitting next to her) had been in frequent contact with the board member’s family and the family was doing well. Not long after this, I had the chance to have coffee with two members of the family (the board member’s spouse and child). I said I was glad Ms. Avner had been staying in touch with them. Both looked stunned. Ms. Avner had never called them, not even once.

Like I said at the outset, until and unless the board of the Brain Injury Association of NY State takes action, BIANYS will remain an insular presence controlled by a dictatorial executive director who should resign or be fired.

Mccooey & Feeney Now Targeting Children

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If you’re looking for integrity and honesty in business leadership you’d be well advised to avoid the likes of John Mccooey and Timothy J. Feeney. If you’re looking for honesty and integrity in healthcare, healthcare for your children, then, when it comes to Feeney and Mccooey you might want to crawl under a rock. Wait, better not. Under a rock is exactly where you’re likely to find Mccooey and Feeney. They head-up an Albany-based company called  OB2L (Overcoming Barriers to Learning) .

Readers of this blog know that in 2008 this writer revealed that Timothy J. Feeney had for years misrepresented his education credentials to all comers. While Feeney has a legitimate bachelor’s degree, his so-called masters and PhD were issued by a now defunct diploma mill called Greenwich University that operated on Norfolk island off the coast of Australia before closing its doors. GU was a non-accredited diploma mill whose degrees have never been recognized as valid anywhere on planet earth. The Australian government issued an alert about GU.

None of this has stopped Mccooey and Feeney from joining forces and targeting children with disabilities on a website that lists Feeney as Timothy J. Feeney, PhD. Both Mccooey and Feeney know this claim is untrue but that hasn’t stopped them from targeting children with autism, fetal alcohol syndrome, traumatic brain injury, substance abuse issues, mental illness, ADHD and reactive attachment disorder.

What’s equally curious and deeply disturbing is the website’s claim that this company has worked with 130 school districts around the world.

Will they get away with it? We’ll see. New York State only offers title protection, meaning one can’t claim to be a social worker, doctor, psychologist, or psychiatrist without the necessary degrees from accredited institutions. My guess is the Feeney-Mccooey duo is trying to thread the needle by saying the former has a PhD. We’ll see how far it gets them.

One last note. When I met Mccooey in 2001 he told me that at one time in his life he was thinking of becoming a monk. I suspect there are at least two reasons he did not pursue this.  You can’t live a life revolving around making money and shoring up a fragile ego as a monk and, in order to be a monk, you have to be in possession of a conscience.

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