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.

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.

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.

Time to say goodbye to BIANYS’ Avner

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.

An Update for My Readers

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.