With their hearts on my mind

I will be testifying today at a public hearing being held by members of the New York State Assembly about Governor Andrew Cuomo’s plan to demolish the lives of New Yorkers with brain injuries by moving them into managed care and annihilating the services they need and deserve to protect their independence – and keep their homes.

I’ve got plenty of motivation. In addition to my own brain injury, I live with a bullet lodged in my brain as a result of being held up and shot in the head, I know hundreds of New Yorkers with brain injuries. Incredible individuals who only ask for respect, and respect includes access to the care they deserve and the independence they have a right to keep.

  • I know a young man who suffered his brain injury in a car accident; he witnessed the decapitation of two of his friends during the accident.
  • I know a woman who one winter day was walking through a park with her husband pulling her two toddlers on a sled. A drunk snowmobile driver crashed into them. When this woman came out of a coma she learned she would never again move from the neck down, and she learned that both her children had died in the accident.
  • I know a brave woman who is a wheelchair user as a result of her brain injury, an injury caused by meningitis caused by a mosquito bite.
  • I know five good men who, like me, suffered their brain injuries from being shot in the head.

That’s just a sampling of the many survivors of brain injuries I know. I can barely see through the tears now as I think about them all, and contemplate the suffering  the Cuomo administration wants to inflict on them. I will testify today with the hearts of thousands on my mind. Not at all incidentally, the very people in Cuomo’s Department of Health who devised this plan openly acknowledge they know nothing about the brain or brain injury.

Now, there are some truly good people in the New York State legislature.  I’ve met them. I even believe in them.  I know too that to do the right thing for New Yorkers with brain injuries they will have to stand up to some intense opposition from a governor who many say is something of a bully.

I do not fear bullies. Not even a little.

I believe members of the state’s legislature have it in them to stand up and do the right thing. Consider the document below. It is the triage assessment of me the morning I got shot. The circled area says, in part, Patient walked into the ER accompanied by the police. Profuse bleeding from head wound. It was five in the morning when I got shot. When I regained consciousness, there was no one around. I got back to me feet and got myself help. So, if I can stand up and get myself help after being shot in the head at point blank range, I have no doubt members of the NY State Legislature have the capacity to stand up and do the right thing for New Yorkers with brain injuries. The question is, will they?



Cuomo’s DOH: secretive, cruel, dishonest & incompetent

Whether or not you’re on the New York State’s Traumatic Brain Injury Medicaid Waiver, you’ve got no allies in Governor Andrew Cuomo’s Department of Health. In fact, Cuomo’s DOH is the main reason NYers with brain injury disabilities are struggling to get the services they deserve.

Recently this writer asked Deputy DOH Commissioner Mark Kissinger who in the DOH was drafting the new TBI Waiver Manual. He would not tell me. Never mind that he oversees the waiver and knew the answer, he simply would not tell me. I then filed a FOIL (Freedom of Information Law) request for the information. After about twenty days I received notice via email that the DOH needed another 30 days to gather the information.

In other words, I was being asked to believe that Kissinger genuinely needed 50 days in all to figure out who worked for him. 

In all likelihood the reason for the DOH’s reluctance to provide the information is linked to the following fact. Not one of the people drafting the manual have any expertise at all in the brain. Not a clinician among them. In fact, when the information requested  finally arrived, those drafting the manual are some of the DOH folks who’ve been inflicting the most damage on waiver recipients, cutting services whenever they can think of an excuse, ending housing subsidies, limiting services, and sending out notices seeking to throw people off the waiver altogether.

Who are those in the DOH drafting the manual (an in-progress document the DOH will not share with anyone)? Kissinger, Lydia Kosinski, Dawn Wiese and, Maribeth “Knuckles” Gnozzio. Gnozzio stopped attending meetings of the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) once her rather problematic background was fully exposed in this blog. Never mind that she’s the program director for the waiver, why bother to attend council meetings when the council’s legislative mandate is to help the DOH identify effective ways of growing the lives of NYers with brain injuries?

The DOH’s dishonesty is on display anytime it professes to care about NYers with brain injuries.

It warehouses some with brain injuries in other states, and despite spending millions of NY taxpayer dollars for their care, refuses to follow-up when informed a NYer placed out of state is suffering or, worse still, being neglected, abused. At a recent TBISCC meeting DOH officials were anything but response when asked what, if anything, prevents New York from filing a complaint with the federal government’s Centers for  Medicaid & Medicare Services (CMS) if it suspects a NYer placed out of state is not getting proper care. CMS oversees long term care in all the states. The fact is, the DOH doesn’t care. Despite the huge sums for keeping NYers placed out of state, sources say it is less expensive than bringing them home.

Lest anyone think there is an upside to the DOH, consider this.  A federal judge had to issue a restraining order in 2011 to prevent the DOH from throwing from throwing a 66-year-old disabled woman off the the TBI Waiver and ending her housing subsidy and demanding the woman pay them $24,000, all without explanation. Actions that would have likely put her life in danger by rendering her homeless.

Can you guess who in the DOH were driving the bus back  in 2011? Let me help you: Kissinger, Kosinski, and “Knuckles” Gnozzio. Three of those drafting the TBI Waiver manual. No wonder they didn’t want anyone to know.

NY State’s assault on NYers with brain injuries continues unchecked

The New York State Department of Health is refusing to release the names of the people  drafting the new manual for the state’s Traumatic Brain Injury Waiver.  To his credit, Deputy DOH Commissioner Mark Kissinger has revealed the state’s  opinion of New Yorkers with brain injuries, particularly those participating in the TBI Waiver. He ignores them. He now ignores written requests for the names of those DOH staff (and contract employees, if any, are involved) designing the TBI Waiver Manual. Moreover, the DOH, thus far,  has not honored a Freedom of Information Law request for the names filed by this writer.

The TBI Waiver is a Medicaid program designed to keep those with brain injury disabilities living in the community and to help others return to the community. Kissinger, who has more than once and no doubt will again profess DOH’s desire to work with all stakeholders – has proven that assertion to be glaringly disingenuous. It’s too bad because the likes of the Brain Injury Association of NY State, the state’s Traumatic Brain Injury Services Coordinating Council, Disability Rights New York (the state’s protection and advocacy agency),  the Kahrmann Advocacy Coalition, along with people with brain injury disabilities, their  families a friends, experts in the field of neurology, and more,  are all willing and eager to work collaboratively with the DOH. The DOH is not interested in collaborating with anyone.

Disrespecting New Yorkers  with brain injury disabilities is nothing new for the DOH. Things have gotten even worse under Governor Andrew Cuomo. Several, who have asked not to be named out of fear of reprisal from the governor, have said Cuomo is something of a bully. I’m not surprised. It would be nice to learn otherwise, but actions speak louder than words and given that Cuomo has a well-earned and even admirable reputation for keeping close tabs on all state agencies, it is impossible to believe he is unaware of the DOH’s disrespectful and ruthless treatment of NYers with brain injury disabilities, not to mention the similar treatment the state inflicts on those waiver providers struggling to provide the best services for their clients. There has not been an increase in reimbursement rates for them since 2007 and providers receive zero reimbursement for training their staff in brain injury.

All this brings us back to the DOH’s refusal to release the names of those designing the TBI Manual. I suspect one of the underpinnings for the refusal is this: those developing the manual have no expertise whatever in the brain or brain injury. A sickening and scary truth.

Please don’t think this is the only example of the DOH savaging the rights of New Yorkers with brain injuries.  Until November 2011,  if you filed a complaint related to the TBI Waiver you were never ever informed of the outcome of the complaint. If you were a waiver participant and your rights were denied in some way or you’d been abused or had your belongings stolen by a staff member and you filed a complaint with the DOH, you were never told the outcome of the complaint. The DOH acknowledges this. And, when it claimed to have changed this policy, agreeing to inform participants of the outcomes of their complaints, one DOH official admitted  the DOH was unable to provide the outcomes for the thousands of complaints previously filed. Given the waiver came to New York in 1995 were talking about complaints filed over a span of 16 years whose outcomes will never be provided to the complainants. Interestingly,  the DOH official who openly admitted the DOH was unable to provide the outcomes to these complaints was none other than Deputy Commissioner Mark Kissinger, the very same DOH official who now ignores requests for information New Yorkers legally have a right to.

You wonder if the likes of Kissinger and Cuomo forget they work for New Yorkers. Perhaps they simply don’t care.

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.

New York’s Cuomo shaky on ethics reform

How New York Governor Andrew Cuomo can talk about the need for ethics reform while heading up a secretive, dysfunctional, and, at times, ruthless state department of health s beyond me. But, then again, self-serving lip service from a politician is nothing new, and nothing to praise.

This blog has for years now documented the problems with the state’s DOH, particularly its approach to New Yorkers with brain injury disabilities (BID). The state’s Traumatic Brain Injury (TBI) Waiver, a form of Medicaid reimbursement designed to provide services to people with BID so they can remain and or return to the community is headed up by Maribeth Gnozzio, whose sole claim to fame was not being prosecuted by the federal government as part of an arrangement between her husband, Robert Janisewksi, former Hudson County executive in New Jersey, who was prosecuted for taking bribes and sentenced to 42 months in federal prison, and the FBI. 

Knuckles Gnozzio, as I like to call her (we met once at a meeting and when shaking hands at the end of the meeting I discovered Knuckles is one of those folks who for some odd reason thinks its impressive (or scary?) to squeeze someone’s hand as tightly as possible in a handshake) issued a verbal directive in October 2010 blocking TBI Waiver Providers from advocating for waiver participants at Medicaid Fair Hearings. These fair hearings are designed to allow Medicaid recipients to contest decisions to cut or end services altogether, a task not easy to accomplish when your BID makes speech, memory, hearing, noise management, etc. a challenge. Something the DOH knows perfectly well.  Nothing depicts the lack of commitment to PWBID more clearly than the fact the DOH does not require staff involved in overseeing the TBI Waiver to have any training in the brain whatsoever.

In some (not all) respects, the DOH’s handling of the waiver has been highly unethical from the start. For example, from 1995 until recently, waiver participants who filed complaints with the DOH related to the waiver were never told the outcome of their complaints.  Can you imagine filing a complaint with a law enforcement or regulatory agency, company or school and never being informed of the outcome? 

Equally troubling was the fact the Brain Injury Association of New York State (BIANYS) remained dead silent on the fair hearings and complaint issues  and the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) did nothing about either. Until recently, the TBISCC was simply a forum for its leaders to grandstand and its contingent of truly committed members to be stifled.

It was almost beyond comprehension to discover in late 2012 that council chair at the time, Michael Kaplen (former BIANYS president) and council vice-chair, Judith Avner, (current executive director of BIANYS) were still at the head of the table even though their terms had expired nine years and eight years earlier – Avner’s on Aug. 9, 2003 and Kaplen’s on Feb. 12, 2004. Kaplen is no longer chair and Avner is no longer vice-chair. Some thought their true colors emerged at the last council meeting when, no longer being at the head of the table, both left the meeting during the lunch break and never returned. The council has a new chair and BIANYS has a new president so this pen is somewhat hopeful things will change. But, as the saying goes, actions speak louder than words.

As if all this weren’t enough to make one question the sincerity of Cuomo’s commitment to ethics reform, consider this. Last year New York State spent something in the neighborhood of $133 million in New York dollars for the care of New Yorkers placed in out-of-state medical settings. However, if you are a family member who is concerned about the care your family member out of state is getting, you will get no help or support from the DOH. They will tell you they do not have jurisdiction over out-of-state facilities (which everyone knows). What they don’t tell you is that until a few years ago, the DOH did have staff who would follow up on the concerns of family members, request and get case notes, set-up meetings between concerned family members and the respective facilities, and help resolve the issues at hand. Not anymore. So, again, the governor can talk about the very real need for ethics reform all he wants, but somebody better tell him, actions speak louder than words.