Category Archives: TBI

KAC files grievances with NY State agencies

Posted on by
5

The Kahrmann Advocacy Coalition this week filed formal complaints with the New York State Department of Health and the New York State Commission on Quality of Care for People with Disabilities after receiving reports that agencies overseeing the Traumatic Brain Injury Waiver in Long Island and New York City are taking a dangerously long time approving treatment plans for waiver participants. Moreover, it appears these agencies are often non-responsive to calls from waiver participants and are not providing the services they are required to provide while participants are waiting for services.

If these reports are accurate and it certainly appears they are, the behavior of these RRDCs are putting the lives New Yorkers with brain injuries at risk. Both the DOH and the CQC have indicated they will investigate these complaints.

It is important to note that this is not the first time KAC has warned DOH as well as the Traumatic Brain Injury Services Coordinating Council that the lives of waiver participants are being placed at risk.

The RRDC for Long Island is  Self Initiated Living Options, Inc. Suffolk Independent Living Organization (SILO) locate at 3680 Route 112, Suite 4 in Coram, NY 11727. Their phone number is (631) 880-7929. The RRDC for New York City is Visiting Nurse Association Health Care Services d.b.a. VNA of Staten Island located at 400 Lake Avenue in Staten Island, NY 10303. Their phone number is (718) 816-3555.

Messages have been left with both organizations voicing concerns over these troubling reports.

A win for all NY TBI Waiver Participants

Posted on by
5

As a result of the relentless pressure brought to bear on the NY State Department of Health by the Kahrmann Advocacy Coalition, several sources across the state this week confirmed that last month the DOH  instituted a form letter that will inform TBI Waiver complainants of the results of their complaints.

The letter will identify the content of the complaint received, the fact the investigation was carried out, whether the complaint was or was not substantiated, and, if substantiated, the steps that were taken as a result. Moreover, if the complaint is about the Regional Resource Development Center – the RRDC is the agency contracted with the DOH to oversee the waiver in regions throughout the state which includes investigating complaints – or the investigation is not within the RRDC’s abilities, the complaint will be forwarded to DOH for investigation. This is a huge win for the advocacy community and for all New Yorkers who live with brain injuries.

KAC members who relentlessly pressured the DOH to institute a policy of informing complainants of the results of their complaints deserve the heartfelt gratitude of all who live with brain injuries and their loved ones. This change would not have come about were it not for their efforts.

It is also very important to make note the following. This confirmed information did not come from Deputy DOH Commissioner Mark Kissinger, nor did it come from anyone in the DOH in Albany. This is important to know for a few reasons.

  • It is very likely the last thing  the DOH in Albany wants to do is give credit to any advocacy group for this policy change.
  • It is very likely the DOH did not publicly announce the change because in doing so they would have to admit their policy of not providing complaint results has been unjust and immoral all along.
  • And just to fire a warning shot across the bow of the good ship DOH, don’t even think about linking this change to the fact the Brain Injury Association of NY State’s contract for answering the complaint line ended as of October 1. BIANYS was never the reason complainants weren’t informed of the results.  The sole responsibility for that inhumane policy rests squarely on the shoulders of the DOH.

The care-less leadership in NYS’s DOH & TBISCC

Posted on by
Reply

I think I’ve reached the age where if someone is going to lie to me, the least they could do is make a little effort and be halfway good at it. Bad enough there are irresponsible, unethical people who have power over the lives of others, worse when those people lie and make the rules up as they go along, endangering lives of others in the process.

A November 5 article in the New York Times about the frightening state of affairs in New York State is chilling.  It also accurately reflects the kind of sloppy sub-standard oversight the New York State Department of Health has brought to the state’s Traumatic Brain Injury (TBI) Waiver

It is a well known fact that the DOH refuses to tell people who file complaints related to the TBI Waiver the results of their complaints. They never have. In fact, several Regional Resource Development Specialists, DOH contract employees who oversee the waiver in various regions throughout the state, have told this writer and others they are instructed not to provide the results.  Until recently when their contract to answer the complaint line ended, even the Brain Injury Association of NY State was never informed of the results.

This kind of mangled dysfunction may explain why Deputy DOH Commissioner Mark Kissinger  reminded me last week of the comedian Richard Pryor. Pryor used to tell the story of how his wife caught him in bed with another woman. “You gonna believe me or your lyin’ eyes?!” Pryor exclaimed. And so it was that when last week I emailed Mr. Kissinger asking – again – when the DOH was going to inform complaints of the results of their complaints, he wrote back saying the DOH does inform complainants of the results! Like I said, if someone is going to lie to me the least they could do is make an effort not to sound, well, like a fool. And so, I sent him the dates of complaints I filed in 2010 and 2011 and am still waiting for the results. I would be remiss if I didn’t tell you that a freedom of information request I filed this summer with the DOH asking for the results of my complaints was denied.

And then of course we have the chair of the Traumatic Brain Injury Services Coordinating Council Michael Kaplen who will never remind anyone of Richard Pryor. Kaplen, whose term on the council expired in 2004, still clings to his seat and chairmanship like his life depended on it. His true colors showed during the September 12 council meeting when he  immediately moved to adjourn the meeting  after the council was publicly informed  by this writer that the quality of lives and the lives themselves of waiver participants were at risk because of the DOH. And, when the DOH and New Yorkers with brain injuries could benefit from a TBISCC if it did what its supposed to do, provide proposals to the DOH to better the lives of New Yorkers with brain injuries, Kaplen cancelled the council meeting scheduled for November 15 and provided no follow-up date.

Neither Kaplen nor the DOH will explain the reasons for the cancellation. It has become clear that most if not all council members were given no explanation of the cancellation either.

Let me be clear, the TBI Waiver and the TBISCC are critically important to the lives of New Yorkers with brain injuries. They just need to be run by people who give a damn and who are inclusive in their approach.

Two things: if people suffer and or lose their homes or  lives because of the actions or inactions of the DOH, those in the DOH should be charged, tried, and, if found guilty, jailed. And if the DOH wants to, say, take one small step in the right direction, it might be interested to know that the New York City number it now gives out for the TBI Waiver complaint line belongs to someone who hasn’t worked for them in quite some time. And that’s no lie.

 

Anger, compassion, love, advocacy & BIANYS

Posted on by
3

I am always surprised when I hear there are or may be people who are scared of me or perceive me as being a walking bundle of anger when it comes to my advocacy. Our view of ourselves never matches the way others see us and so we are fortunate to have friends and loved ones who are honest with us.

There are some who mistakenly believe I have some personal anger and dislike for people like Judith Avner and Marie Cavallo, executive director and president of the Brain Injury Association of New York State. The fact of the matter is I love them both very much and if word reached me tomorrow that life had wounded either of them in any way I would be there for them in a  heartbeat. The fact we have  some significant differences on other fronts in no way diminishes my love for each of them.

There is a fine line between holding people and organizations accountable as opposed to lashing into them with what comes across as personal anger;  and I am not about to pretend or claim that I’ve walked that line perfectly. I do know that my responsibility, a chosen responsibility, is to be honest with the world around me, which means being honest about what I know to be my flaws. I am not perfect nor will I ever be. I am deeply honest and deeply compassionate and I am deeply committed, right to the marrow of my very soul, to equal rights for all people – all people.

When it comes to equal rights, whether they be for people with brain injuries, blacks, Latinos, Jews, gays and lesbians, Asians, Muslims and so forth, it is not about me, and I can’t make my choices or write pieces here in this blog based on what I find emotionally comfortable or pleasing. On a deeply personal level I hate holding people I love like Judy and Marie publically accountable for things; my heart hurts over my current estrangement from BIANYS. I have had a relationship with them for many years.

BIANYS does certain things magnificently. They are the best educational  and information resource on brain injury in the state (It blows my mind that the New York State Department of Health doesn’t take advantage of BIANYS trainings for its staff who are involved with brain injury).  BIANYS has a grant from OPWDD (Office for People with Developmental Disabilities) that allows them to employ a group of people who are able to advocate for brain-injured New Yorkers if they received their injuries before the age of 18. The BIANYS staff who do this work are superb. However, BIANYS does  not have the staff and, in my view, because they do not want to risk losing a grant from the New York State Department of Health, will not publically hold the DOH accountable for some of its ongoing horrendous behavior when it comes to the TBI Waiver, and, as a result, does not publically advocate for people on the TBI Waiver, people  who sustained their injuries over the age of 18 and under the age of 64. Therein lies our differences; you can’t claim the mantel of leading advocacy agency for brain-injured New Yorkers in the State and remain silent when it comes to DOH behavior.

Now, about my anger, and yes, it is there, not as much as you might think but there are times, yes, I am angry. It is true that behind most anger is heartbreak, sadness. And it breaks my heart, deeply saddens me when I see brain-injured New Yorkers being treated by the DOH and others as if they are less than human, and, in some ways, as if they are disposable. And so I can’t remain silent, nor will I. All I ask is that people and organizations actually do what they say they do. No more, no less.

But let me say again; Judy and Marie are not my enemies, I do not dislike either of them. As I said, I love them both, very much. I hope as the days move forward some of the gap can be closed. We’ll see, it takes movement on both sides, one day at a time.

Kaplen & Avner hijacked NY State’s Brain Injury Council

Posted on by
6

In what can only be described as a self-serving power grab and utter disrespect for their colleagues and brain-injured New Yorkers, Michael Kaplen and Judith Avner continue to control the New York State’s Traumatic Brain Injury Services Coordinating Council (TBISCC) even though their terms on the council expired in 2004 and 2003 respectively.

A document released to a member of the Kahrmann Advocacy Coalition by the New York State Department of Health reveals that Kaplen’s term expired on February 12, 2004 and Avner’s term expired on August 9, 2003.  The fact they continue to show up at meetings and claim the mantel of council chair and vice-chair is, at minimum, an astonishing display of arrogance and, in an even harsher light,  a rather self-serving desire on both their parts to be the center of attention and control the state’s dialogue on brain injury.  Avner is the current executive director of the Brain Injury Association of NY State,  Kaplen is its past president. Both are lawyers. Advertisements for Kaplen’s law firm display a focus on representing brain-injured New Yorkers.

The TBISCC was formed in 1994 by an act of the state legislature and it can be and should be an important presence beneficial to brain injured-New Yorkers, providers of services to brain-injured New Yorkers and, not at all incidentally, the Department of Health. By design and purpose the council is there to provide the Department of Health with proposals for services for Brain-Injured New Yorkers. A review of council minutes under Kaplen and Avner reveals that the council has offered virtually nothing under their watch in the way of proposals.

As a brain-injured New Yorker and as one whose name is linked to the largest grassroots advocacy group for brain-injured New Yorkers in the state, I can tell you that the TBISCC must be allowed to flourish and act on its mission, two things that will not happen if it continues to be hijacked by two individuals who are not even members of the council anymore.