Cuomo’s dysfunctional Department of Health remains unchecked

An attorney for New York State’s records access office says the state’s Department of Health does not maintain records identifying how many New York State Medicaid recipients with brain injuries are placed out of state. A shocking admission given the DOH has spent roughly 1.5 billion of the state’s Medicaid dollars on New Yorkers placed out of state from 2003 to 2013.

In a March 21 letter responding to a FOIL (Freedom of Information ) request filed by this writer asking, in part, how many New York State Medicaid recipients with brain injury disabilities are currently placed out of state, Elizabeth Sullivan, an attorney for the state’s records access office,  says “the department [of health] does not maintain Medicaid data for those diagnosed with (brain injuries) as no such coding exists exclusively for these diagnoses.”

Just when you think it impossible for the state’s DOH to appear even more dysfunctional – and disingenuous – the DOH proves you wrong. There is ample evidence of disingenuousness when it comes to the DOH. One example would be a sentence in Ms. Sullivan’s letter to me: “Upon further review of your conversations with Mr. (John) Harper (of the state’s Office of Health Insurance Programs) this office has determined the following enclosed tables are responsive to your request.”  Kudos to Ms. Sullivan for a well-written sentence. One minor problem with its content; I never had conversations with Mr. Harper. As for the tables she references. They list the numbers of New York residents on Medicaid placed out of state but whether they have brain injuries or not is anyone’s guess.

Another example of the DOH’s disingenuousness is its public assertion that it cares about New Yorkers who live with brain injuries yet when those who are stakeholders seek to work with the DOH to improve the lives of NYers with BID, the DOH gives them the straight arm. The DOH recently took part in a phone conference with representatives from  the Brain Injury Association of NY State, the Center for Disability Rights, Disability Rights NY (the state’s protection and advocacy agency), the Traumatic Brain Injury Services Coordination Council (TBISCC) and the state’s Justice Center. It didn’t matter that the DOH had the agenda for a week, nor did it matter the agenda asked the DOH to clearly identify the number  of New Yorkers with BID placed out of state, and, clearly identify what support family members of those placed out of state could count on from the DOH. DOH representatives on the call provided none of the information sought. The DOH would not commit to a follow-up meeting with the stakeholders.

There is an effort underway to create an independent office for brain injury in the state. Good idea. But the current effort asks that the office remain in the control of the DOH. The very notion of the office being under the control of the DOH is a betrayal of New Yorkers with BID and their families. In truth, the office would be well-situated in a non-state agency, a non-profit that knows the plight of those who live with disabilities: CDR (Center for Disability Rights) would, at this point, be this writer’s choice. In fact, if the Cuomo administration wants to prove their claim of caring about individuals with BID is more than lip service (as well as his voiced commitment to ethics reform), then it should recognize that both the TBI and Nursing Home waivers  would be well-served under CDR’s leadership.

Over the past few years this blog has more than once memorialized the truly sickening mess that is the DOH. Examples abound: for 15 years plus  if you were a participant in the state’s Traumatic Brain Injury (TBI) Waiver and filed a complaint, the DOH never informed you of the results of your complaint. For 15 years the DOH’s most powerful person, when it came to the TBI Waiver, was Timothy J. Feeney, who then and now misrepresented his educational credentials, telling all the world he had a PhD and a Masters Degree when, in truth, both documents were issued by a now defunct diploma mill off the coast of Australia and were not and are not recognized as valid anywhere on planet earth.

Then, of course, you have the saga of Maribeth “Knuckles” Gnozzio. Knuckles, who wields enormous power on both the TBI Waiver and the Nursing Home and Transitions Waiver fronts, appears to have escaped federal prosecution thanks to a deal cut by her husband, Robert Janiszewski, who was convicted in 2002 of extortion and tax evasion by federal prosecutors. As this blog pointed out in January, Cuomo’s stated commitment to ethics reform is nothing more than smoke and mirrors if Gnozzio remains in place.  Reform “doesn’t seem to be on Knuckles Gnozzio’s mind. In 2010 she was the one who issued the verbal directive blocking waiver staff from advocating for waiver participants at Medicaid Fair Hearings, a move that has undermined the ability of many to truly represent themselves, which was Knuckles plan? Was it Cuomo’s plan as well? Or did he simply not know what his DOH was doing. He has known for some time now, and still not change. It was also Knuckles Gnozzio that directed that the housing subsidy this writer was receiving when he was on the TBI Waiver be taken away and it was Knuckle’s Gnozzio who led the effort to deny this writer a request for white noise machines secondary to sound sensitivity related to my brain injury. Gnozzio needs to go and, if Cuomo is telling the truth about his commitment to ethics reform, she will. If he isn’t, she won’t.”

It seems to me that the best thing that could happen for New Yorkers, in and out of state, who live with BID, is for the DOH to be removed from the equation altogether.

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NY State’s Brain Injury Council & Association: the tip of the iceberg?

The early stages of a  Kahrmann Advocacy Coalition investigation into the make up of brain injury associations across the country is finding there is no shortage of personal injury attorneys on board of directors.  The investigation is also beginning to reveal that few (if any) of these attorneys received any formal training in the brain.  As many know, people with disabilities and people with brain injury disabilities are often seen (and treated) as if they are little more than potential revenue streams.

Two perfect examples of dysfunction in the world of brain injury disability will be on display tomorrow in Albany: he New York State Traumatic Brain Injury Services Coordinating Council (TBISCC) and the leadership of the state’s brain injury association; both ineffective groups when it comes to advocacy and, given what is going on around the country, they may well be the tip of the dysfunction iceberg when it comes to brain injury disability.  The TBISCC will meet in Albany in part to elect a new council chair. However, a major part of the day’s opening agenda is a presentation to the council by Judith Avner, an attorney who is the executive director of the Brain Injury Association of NY State, and someone who several sources say recently blocked people with brain injuries from being on a committee that represented people with brain injuries (fiction writers would he hard pressed to come up with story lines this dysfunctional).  So, council members and members of the public will get to watch Ms. Avner represent BIANYS to a council head by Michael Kaplen, a personal injury lawyer who continues to claim the chair position on the  council even though his term expired years ago.  Not to be outdone on the gall front, Ms. Avner resigned from the council at their last meeting; an organizational feat that would make a magician proud since her term had already expired nearly 10 years ago. Imagine that, resigning from a position you no longer have. Voila!

Despite the fact some of the council members genuinely care about the council’s mission (to provide goals, ideas and strategies to the DOH to improve the life of New Yorkers with brain injury disabilities), the council, to date, has failed miserably. There are several reasons for this. The two council chairs to date, first, Charles Wolf, then, Michael Kaplen, are about as self-serving as it gets. At one point Wolf nominated himself for the position of chair and Kaplen, well…Kaplen’s term as chair expired some years ago but there he sits, claiming the mantel. Another reason for the councils failure is the state’s Department of Health, about as insular and arrogant a state agency that’s ever “walked” the planet.

And then, of course, there have been members of the Brain Injury Association of NY State on the council which is a glaring conflict of interest given the fact the DOH provides the association with a sizeable grant.

There is some hope for the council. If council members elect Barry Dain as chair, the council has a chance of moving in the right direction. If it re-elects Kaplen, nothing will change, and New Yorkers with brain injury disabilities, their families, and the healthcare providers that really do care will be the ones that suffer. The meeting tomorrow is open to the public. Following is the agenda:

 

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

Empire State Plaza, Concourse Level

Meeting Room 125

Friday, May 31, 2013

10:30 AM – 3:30 PM

AGENDA

10:30 – 10:45 Welcome

Welcome new member Megan Clothier

Review and Approval of 1/23/13 Meetings Minutes

10:45- 11:15 Review of Brain Injury Association of New York State TBI Recommendations

Judith Avner, Executive Director, BIANYS

11:15 – 12:00 State Agency Updates

NYSED Gerri Malone

OPWDD Nicole Suto/Nina Baumbach

OMH Debby Zeterstrom

CQC Colleen Scott

OASAS Cher Montayne

OVS Ann Marie Calabrese

DFS Jeff Pohl

DOH Lydia Kosinski/Helen Hines/Kitty Gelberg

12:00 – 12:45 LUNCH (Members on their own)

12:45 – 1:15 Election of Chair

Nominees: Michael Kaplen and Barry Dain

1:15 – 2:30 Discussion of role and mission of TBISCC/

Discussion of Bylaw Revisions

2:30 – 3:00 Public Comment

3:00 – 3:30 Summary/Next Meeting Dates/Adjournment

Pivotal Meeting for NY State’s Brain Injury Council

So far the New York State Traumatic Brain Injury Services Coordinating Council (TBISCC) has done anything but live up to its legislative mandate: offer proposals and ideas and guidance to the state’s Department of Health, a state agency that ought to be the national role model for resisting any and all input from anyone other than itself, to improve the lives of New Yorkers with brain injury disabilities. Thus far the TBISCC and the DOH is a marriage made in some kind of bizarre, dysfunctional, self-absorbed heaven.

The council meets May 31 and if the agenda (provided below) is any indication, the first portion of the meeting will provide members of the public a close-up view of two of the primary impediments to  equal rights for New Yorkers with brain injury disabilities:  Michael Kaplen and Judith Avner. Kaplen has proven in more than one venue that he is little more than a bully and Avner, the executive director of the Brain Injury Association of NY State sank to a new low last year when she blocked people with brain injury disabilities from being on a committee formed to – wait for it – represent people with brain injury disabilities.

One wonders what Avner’s presentation on “behalf of BIANYS” will include. BIANYS staff members past and present have said disagreeing with Avner on any front results in a nasty backlash; it is made clear that Judy is not to be questioned. At any rate, given that BIANYS has remained dead silent in the face of the DOH’s behavior (one example being a DOH directive that TBI Waiver Providers cannot advocate for their clients at Medicaid Fair Hearings, a move that viciously undercuts the chances that the client living with a brain injury disability will prevail) I imagine Avner’s presentation of, well, Avner, will be a dazzling display of charm-filled lip service.

Lest you think I am overstated the problems named Avner and Kaplen, one must remember that until recently, both continued to claim leadership of the council, Kaplen as chair, Avner as vice-chair, even though  Kaplen’s term had expired in 2004, Avner’s in 2003.

The DOH has allies in Kaplen and Avner. Neither will allow the TBISCC or the BIANYS to hold the DOH responsible for the suffering it is inflicting on New Yorkers with brain injury disabilities. Allowing the likes of Maribeth Gnozzio to head up the state’s TBI Waiver makes it clear the DOH doesn’t care a whit about people with brain injury disabilities. It is only by, one would assume, the grace of God (and her husband’s agreement with the FBI) that Gnozzio did not face criminal charges back when her husband, Robert C. Janiszewski, a former County Executive of Hudson County, New Jersey, pled guilty in 2002 to taking more than $100,000 in bribes. In a 2003 interview, the late Paul Byrne, a childhood friend of Janiszewski’s who was indicted for collecting thousands of dollars in bribes for Janiszewski,  said Janiszewski gave him up to spare Gnozzio from prosecution.

The one ray of hope for those who would like to see the council get its ethical head  above water will occur after lunch when the council will decide whether Barry Dain or Kaplen will be the next council chair. If Dain is elected, there may be real hope for the council. If Kaplen is elected, members of the council will have shown their real colors, colors that put them in lockstep with the likes of Kaplen, Avner, Gnozzio, and others.

If Dain is elected, then, perhaps, the council will reject the DOH’s proposed changes in the council’s bylaws. Examination of the  proposed changes to the by-laws  reveals a blatant DOH attempt to weaken a council, already in disarray, put the council under the state’s control, and weaken the current requirement that people with brain injuries and their families be fairly represented on the council.

I can tell you that this upcoming meeting will be closely watched. If, in fact, Kaplen is re-elected and the council adopts the DOH changes to the bylaws, direct action will be required and will be forthcoming.

 

 

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

Empire State Plaza, Concourse Level

Meeting Room 125

Friday, May 31, 2013

10:30 AM – 3:30 PM

AGENDA

10:30 – 10:45 Welcome

Welcome new member Megan Clothier

Review and Approval of 1/23/13 Meetings Minutes

10:45- 11:15 Review of Brain Injury Association of New York State TBI Recommendations

Judith Avner, Executive Director, BIANYS

11:15 – 12:00 State Agency Updates

NYSED Gerri Malone

OPWDD Nicole Suto/Nina Baumbach

OMH Debby Zeterstrom

CQC Colleen Scott

OASAS Cher Montayne

OVS Ann Marie Calabrese

DFS Jeff Pohl

DOH Lydia Kosinski/Helen Hines/Kitty Gelberg

12:00 – 12:45 LUNCH (Members on their own)

12:45 – 1:15 Election of Chair

Nominees: Michael Kaplen and Barry Dain

1:15 – 2:30 Discussion of role and mission of TBISCC/

Discussion of Bylaw Revisions

2:30 – 3:00 Public Comment

3:00 – 3:30 Summary/Next Meeting Dates/Adjournment

BIANYS Avner sinks to new low

The executive director of the Brain Injury Association of New York State stopped people with brain injuries from being on the committee representing people with brain injuries, say several of the committee members whose identities will be protected.

When committee members complained that there was no one with a brain injury on the committee, Judith Avner is said to have claimed she and BIANYS represented people with brain injuries and pointed out that one of the  committee members had a family member with a brain injury. Avner does not have a brain injury.

Avner did not respond to several requests for comment.

The committee was comprised of providers and others and was tasked with drafting a proposal on behalf of New Yorkers with brain injuries for the state’s Medicaid Redesign Team. The proposal had to be filed by a specified date. Not long after Avner took her  stance against people with brain injuries being on the committee, the committee folded.

People with disabilities, including those of us with brain injury disabilities, encounter people and systems who hold to the inaccurate and misguided belief that we are unable to speak for ourselves. Slowly, slowly, this perception is eroding. However, when someone who has been in a leadership position in brain injury for years oppresses the very people she claims to care about, it is beyond unconscionable. It is a kind of moral fraud. It is also bigotry.

What would happen if a committee claiming to represent Jews or Italians or African-Americans refused to allow Jews or Italians or African-Americans to be on the committee? One would hope there would be an uproar of indignation. One would also hope that those blocking the participation of people they claim to represent are fired.

Life with a brain injury disability can be difficult enough; it is made all the more so when those who claim to care are some of the biggest oppressors.

How could it happen?

After reading a recent blog piece about a New York State brain injury council being in total disarray a friend of mine asked, “How could it happen?”

Good question.

How could a council, formed by an act of a state legislature, drift so glaringly far from its mandated purpose? The New York State Traumatic Brain Injury Council (TBISCC) is, “Under Article 27-CC of the New York State Public Health Law…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.” Yet, as readers of this blog already know, nothing has happened.

There are two people claiming to be chair and vice-chair who aren’t. If the council were to abide by its by-laws, one of the two hasn’t been a member of the council for more than nine years.

What is it that leads people to turn a blind eye, remain silent, including other council members, when others blatantly break the rules? That, and what leads those who break the rules to do so knowing their actions will damage the lives of people with disabilities, in this case New Yorkers with brain injuries? It is not a coincidence that several of the current vacancies on the council are meant for people with brain injuries, yet the agenda for the upcoming December 10 meeting doesn’t mention this.

Back to, how could this happen?

When my friend first asked the question the first thing that came to mind was Abraham Lincoln’s quote: “Nearly all men can stand adversity, but if you want to test a man’s character, give him power.” 

Sit in on a few meetings with Michael Kaplen ( he still insists he is the council’s chair) and you’ll quickly learn he is a bully. I’ve been in meetings with him as participant and observer and witnessed him yelling at people and threatening people. Judith Avner, whose term on the council has been over for more than nine years yet still claims to be the council’s vice-chair, is another kettle of fish entirely. She charms, cajoles, and, were there awards for lip-service skill, would win gold or silver every time.

Having said all this, Avner and Kaplen are not hard to understand. Both strike me as being rather weak and insecure people who, by inflicting their will on others are able to feel some sense of control in life and some sense of, well, power. But what’s the cost? New Yorkers with brain injuries and their loved ones suffer as a result. The fact Kaplen and Avner, both attorneys, know their behavior leaves New Yorkers with brain injuries in the lurch reveals a lack of character.

The real question is, what empowers the enablers? The New York State Department of Health knows full well the council is a mess. Thus far it has said and done nothing. In fact, it sends high-ranking staff to council meetings and answers some council questions.  Perhaps one reason for the lack of DOH oversight can gleaned by  considering a July 5, 2011 blog post: “Minutes from a September 9, 2003 meeting say the council drafted a letter to then DOH official Betty Rice expressing the council’s dissatisfaction “with not being allowed to review (TBI Waiver Manual’s) revisions.”  This underscores what has been an ongoing pattern with the DOH for years; they are not interested in outside input. An ineffective council is to its liking.

But why the silence from other council members? Why the silence from members of the NY State Legislature? What are people afraid of, if, in fact, it is fear that gets in their way?

Perhaps, if council members, and others, listened to and heeded the advice of two heroes of mine (and many others) things might take a turn for the better.

  • Elie Wiesel: “Take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented.”
  • Dr. Martin Luther King, Jr:  “Our lives begin to end the day we become  silent about things that matter.”

This writer did send an email along with information about the council to Dr. Nirav Shah, the New York State Commissioner for the Department of Health.