Category Archives: TBI Waiver

KAC files grievances with NY State agencies

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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

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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

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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.

 

NY State needs and deserves its TBI Waiver

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If you take a Rolls Royce, arguably the best made car on the planet, and put a lousy driver behind the wheel, the car is going to have mishaps, accidents, and probably have a tough time staying on the road. This does not mean you get rid of the Rolls Royce, it means you get a better driver. And so it is with New York State’s Traumatic Brain Injury Waiver. The TBI Waiver is an extraordinary presence in the state and, as one recent person commented on this blog accurately pointed out: “Without the comprehensive services (of the waiver and its) dedicated staff …survivors (of brain injuries) will be forced to live in nursing homes and out of state facilities. These folks will never have the opportunity to live – albeit with supports – as independently as possible in the community, rebuild friendships and relationships, and enjoy life as any other person would.”

The problem is not the waiver. The problem is the insular and dysfunctional staff at the New York State Department of Health who are dangerously mismanaging the waiver, along with a disturbing public silence in support of the waiver from groups like the state’s Traumatic Brain Injury Services Coordinating Council (TBISCC) and Brain Injury Association (BIANYS). I would urge both groups to publicly support the waiver and do so soon.

The TBI Medicaid Waiver came to New York in 1995 so brain-injured New Yorkers living in nursing homes oftentimes in Massachusetts yet paid for by New York dollars, could come back to New York and live in the community. The waiver also helped and continues to help brain-injured New Yorkers at risk for nursing home placement remain in the community.  It is worth noting too that it is less expensive for someone to be on the waiver than in a nursing home.

Time is very much  of the essence. The current behavior of the DOH (along with a well-fed rumor mill that says the state is looking to dump the waiver) is putting the lives of those on the waiver at risk; at real risk. Let’s not forget that a federal court had to step in and protect the life of waiver participant Francine Taishoff from the DOH. Let us not forget that the DOH was seeking to dump Ms. Taishoff from the waiver, charge her $24,000 in back housing subsidies, knowing full well that their actions would’ve probably rendered Ms. Taishoff, who is a senior with a brain injury, homeless, which may well have ended her life. Slashing housing subsidies with little if any explanation, holding off on signing service plans (waiver lingo for treatment plans) for inexcusably long periods of time, blocking waiver staff from supporting their clients at Medicaid Fair Hearings when their services or homes are being threatened, all adds up to a hostile, dangerous, and life-threatening environment.

It was worrisome when,  after publicly warning the TBISCC during their September 12 meeting that lives were at risk,  council chair Michael Kaplen immediately responded by adjourning the meeting, never mind the threat to people’s lives  and never mind that Mr. Kaplen’s term on the council, we later learned, ended in 2004.

None of us want to wake up one morning and learn that someone has died because of the behavior of the DOH; but it is the DOH, not the waiver that is the problem. If the waiver is not protected and better “drivers” placed at the helm, tragedy awaits. It’s inevitable.

This country was founded on the belief that individual freedom is an unalienable right. Freedom includes independence, and all people, with or without disabilities, deserve the maximum independence possible. To dismantle or abbreviate the waiver, rather than supporting it, building it, and giving it better “drivers,” would be the denial of freedom and independence which is, when all is said an done, about as un-American as it gets.

 

More on compassion, love & advocacy

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Three very thoughtful comments in response to the last blog post,  Anger, compassion, love, advocacy & BIANYS,  along with some equally thoughtful emails and phone conversations have helped me recognize it would be wise for me to write more about what one reader accurately summed up: “Your recent blog piece sounds like you are reviewing your advocacy tactics.” It’s true. I am and always try to with varying degrees of success.

All of us are wise to keep track of the patterns we find ourselves in. Sometimes it takes those close to us to point them out, and if we are centered enough, we can try on these observations and change accordingly without falling into the trap of clinging to old habits. John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” How true.

I want to comment a bit on some of what I’ve read and heard in response to the last blog piece. But first  we must stipulate to the fact that the very act of holding people and organizations accountable may upset people. I can’t do anything about this. What I can do is advocate with intensity and tenacity and honesty and do my level best not to make anything sound personal. But, if leaders of various groups, government agencies, and others blatantly ignore those they claim to serve, I am going to say so. If organizations do not do what they tell people they do, I am going to say so. I have no other choice. One thing is very clear, things can’t go along business as usual when it comes to the realities currently being faced not just by brain-injured New Yorkers but by all people with disabilities in this state and beyond.

What I must pay close attention to is my contribution to the push for change. People in leadership positions must recognize and, in their choices, live the following reality: the Kahrmann Advocacy Coalition is not about Peter Kahrmann any more than the Brain Injury Association of NY State is about Judy Avner or Marie Cavallo, or the Traumatic Brain Injury Services Coordinating Council is about Michael Kaplen and Judy Avner. These groups are about and only about the people they are there to serve. And if any of us – including me! – gets too it’s-all-about-me, people around us need to call our attention to this and we need to listen and change accordingly.

Some things are not personal. It is not a personal attack for me to point out that Michael Kaplen and Judy Avner are sitting on a council even though their terms expired seven and eight years ago respectively. There is something not right about this and it needs to be addressed and I would point out this truth gives them the opportunity  to do what anyone – including me – in leadership positions must do – and that is recognize when we’ve fumbled or gone wrong and do the right thing. There is nothing personal about my pointing out that the council, certainly under Kaplen’s chairmanship, has failed to do pretty much of anything it was designed to do, and this is something he needs to reflect on, step down, and let others take the lead.  Upon hearing that George Washington stepped down after his second presidential term, King George of England said, “If Washington gave up power he is the greatest man on earth.”

Now, to the comments.

One person wrote in a beautiful statement about Marie Cavallo and I could not agree more. Marie has very much given and continues to give her heart and soul to the cause of brain-injured New Yorkers. It is true too that she is in a position where speaking what she really thinks is politically risky, and here is where, like me, she may want to do some reflection; is the “forced” silence worth the position? Only she can decide that. I love her no matter what she does, and I can say the same about Judy.

Another person wrote, in part, about the importance of establishing partnerships; they too are right. It is important (I am quite sure my correspondent knows this) that groups who form partnerships understand they are partnerships, meaning one group can’t simply say to another; you must accept everything about us as is, especially when some of the as is hinders or impedes equal rights for brain-injured New Yorkers.

Another person wrote in pointing out that BIANYS  is no longer the answering component for the complaint line, now the regional representatives for DOH will do that. Two things: this change does not change the fact complainants never get the results of their complaints and perhaps now BIANYS will be able to openly advocate that they do.

We are all works in progress – including me.