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

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

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