If you’re going to lie to me….

I don’t ask for much in life other than respect, so, if you are going to disrespect me by lying  to me, the least you can do is make an effort to make it a good, show a little creativity for God’s sake.

I’ve decided to rummage around in my mind and, perhaps the minds of others, to develop some fun, at least for me, responses to people who lie to me so brazenly and obviously I don’t know whether to burst out laughing and ask them if they’re joking or simply stupid enough to think I believe them, or smack them upside their “head” with a verbal dagger that says, we both know you’re lying and you’re such a self-absorbed little twit you’re going to stand by your stench-rubbish anyway.

Anyone who knows me knows I have no ability to be silent when someone’s rights are being denied. I don’t care of it’s people with disabilities, people who are Jewish, African American, Latino, Muslim, veterans, members of the LGBT community, women, etc., etc., I’m not about to stay silent. People who know me also know it is very likely, particularly of you are a public official or someone in a position of authority, that I am going to expose your bigotry for all to see. 

All that aside, let me say there is a special place in hell for people whose claim to care about the rights of others is nothing more than lip-service smoke screens. A form of dishonesty so glaringly obvious I want to grab them by the throat and say, “Why not grow some backbone and say out loud that you don’t give a rat’s ass about these people and you just care about money and power?” 

What’s somewhat amusing is the feigned indignity performances I get to see when I call someone out for lying, for being a hypocrite. They put so much effort into their performance (without exception they’re lousy actors) I’m surprised they don’t snort and dribble out of the corner of their mouths, go into convulsions, and start speaking in tongues. Some feign astonishment to such I degree I expect them to allow their simian roots to take over and start pounding their chest.

Many of the lies I see these days  come from those who claim they are committed to protecting the rights of New York residents who live with brain injury disabilities. Since their commitment is limited to the effort it takes to say they are committed, the least they could do is make a commitment to develop their lying skills. I’ll probably catch them anyway, but at least catching them might pose a sliver of a challenge. However, exposing them will not.

So, here’s the thing, if you’re going to lie to me, make an effort, or give us both a break and shut up.

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.

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