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?

KAHRMANN 3

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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.

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

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.