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

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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.

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

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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.

My blood’s boiling

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It is rare indeed when I get so angry the urge to be physically violent takes over. I got that angry (and then some) this morning when I read a Facebook post from the person I love and trust the most on the planet announcing he was on his way the VA Emergency Room because he’d received a letter from the VA giving him a hearing date so he can prove he is missing his legs. Michael Sulsona,a Staten Island resident, is a 62-year-old Vietnam veteran. A once (and always) United States Marine. He is an award winning playwright and screenwriter. He lost both  legs above-the-knee during the war in January 1971 when he stepped on a mine. Recently the VA has taken a merciless run at him and, no doubt, many others. First, it sends him notice informing him  it wants to reduce his disability because, it explains, he is only missing his feet. He recently quipped, “Hey, no one whose ever met me has called me the guy who’s missing his feet.” 

When it comes to veterans who’ve experienced the flat-out horror of combat, I don’t give a damn who you are; I don’t care if you’re Republican, Democrat, Conservative, Liberal, Libertarian, Independent, Tea Party, Coffee Party or no party, you (and I) are well-advised to show respect (I think most Americans do) and treat them with respect. Don’t even think about pretending you understand what they’ve been through.You don’t because you can’t. And, when you see any of them getting brutalized by the system, like the entire country is seeing now in the latest disgrace of veterans suffering and dying because of bogus Veterans Administration waiting lists, you should speak up.  Also, if you think the mistreatment of veterans goes on under this White House’s watch only, you’re dreaming. It’s gone on for years under Republican and Democrat administrations.

Were there justice for veterans like Michael, never again would they have to worry about receiving quality healthcare in a timely manner. Never again would they have to worry about having enough money to pay the bills and function comfortably in life. Never again would any of them find themselves in the humiliating position of having to prove the wounds of war, particularly when those wounds are so glaringly evident.

With the Northern Berkshire YMCA, it’s a problem of leadership

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As reported here on April 25 the Northern Berkshire YMCA in North Adams is putting the healthy and safety of its members and staff at risk. Given what’s transpired since, there is little reason to believe real change is around the corner.

The problems:

  • There are no phones or emergency buttons  in any of the locker rooms that would allow a YMCA member to get help in the event of a medical emergency in a timely manner. This means, Mr. Ihne and the YMCA’s board, headed by board president David Brown, are telling families that if their children are using the boys or girls locker room and something goes wrong: a fall, a seizure, some other medical emergency, they better have a cell phone on them, stay in emotional control, and call 911, or, as Mr. Ihne said in an April 17 letter to me, they can yell for the lifeguard (who very likely would not be able to hear them).
  • After the United States Department of Justice inspected city-owned buildings for ADA (Americans with Disabilities Act) violations,  a  2012  settlement was reached. Since the April 25 piece the family locker room has been upgraded to ADA standards and grab bars have been put in half of the men’s shower area. Steps in the right direction. However, neither Mr. Ihne or Mr. Brown will say when grab bars will be put up in the other shower areas and the bathroom stalls throughout the building. They’ve been asked repeatedly.
  • And, as reported here on April 25, an individual took suddenly ill at the YMCA early one weekday morning losing control of his bowels in the pool area and in the locker room area. When YMCA members the next day noticed the area had at best been damped mop but was clearly not cleaned and disinfected, Mr. Ihne and Mr. Brown refused to say what protocol had been followed. Mr. Ihne declared a protocol had been followed but as of this writing, refuses to tell members what the protocol was. Given that the badly sick individual took ill in the pool area all locker rooms as well as the pool area should have been cleaned and disinfected.

If you thought the fact the city owned the building would prompt the city to take action, think again. Mayor Richard Alcombright has said he has great faith in Justin Ihne, the YMCA’s executive director and a major part of the problem.  Councilwoman Nancy Bullet said it is an internal matter. The office of State Senator Ben Dowling has, to its credit, been attentive to the situation.

Mr. Ihne and Councilwoman Jennifer Breen are in a league of their own. When Mr. Ihne (as well as the council members, Mr. Brown and others) were sent two  pictures (see below) of the entrance to the men’s sauna, only inches from where some of the man’s fecal matter had been discharged, pictures taken after Mr. Ihne said the area had been cleaned, Mr. Ihne at first denied the sauna entrance was anywhere near the problem. When he was told he was wrong, that those of us who were there saw the fecal matter right in front of the sauna door, Mr. Ihne responded with a burst of stellar leadership and announced he was blocking this advocate’s emails. However, Mr. Ihne was thoroughly outdone when it comes to outlandish and, frankly, childish responses, by Councilwoman Breen. She signaled her concern for the health and safety of the Y’s members and staff by asking not to be included in the email discussion. When asked why she did run for office if things like this didn’t concern her, she responded by sending me an email praising Mr.Ihne and calling me names. I’m told this kind of behavior is not out of character for Ms. Breen.

Here are the pictures of the entrance to the men’s sauna taken after the so-called clean-up.

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Cuomo’s dysfunctional Department of Health remains unchecked

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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.