Monthly Archives: September 2011

In Praise of Bill Combes

Posted on by
Reply

When you live with a disability, in my case a brain injury, you encounter those whose commitment to your rights is rooted in self-serving lip service and then you encounter those whose integrity, compassion and commitment to people with disabilities is so real and genuine they glow. In the case of Bill Combes, I suspect this good and decent man can read by his own light.

Bill Combes worked out of the New York State Commission on Quality of Care (CQC) for something in the neighborhood of 30 years and as of Wednesday this week, has entered into well-deserved retirement. If ever there was one deserving of accolades from the White House to the State house to the house on Main Street, it is Bill Combes.  The CQC is the Protection and Advocacy agency contracted with the federal government for brain-injured New Yorkers like me. The only flaw in the CQC is, like all such agencies, they never have the number of staff they want, and, frankly, deserve.

Disability rights advocates like me always knew they would get a serious attentive audience when talking with Bill. We also knew that Bill and the CQC would do all it could to fight for the rights of brain-injured New Yorkers. Unlike the state’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council and, for that matter, the Department of Health, Bill Combes and the CQC always offered more than just lip service.

Those of us with disabilities have lost a wonderful ally now that Bill has retired. But, wherever he is, I hope he knows that all the lives he touched are better off because of him. Unlike too many others, he never experienced or treated anyone with any disability as being less than. The completeness of each person’s humanity and worth was never – and I mean never – lost on him.

I am blessed to know him and have had the privilege of working with him. Now it is his family’s turn to have the all of him, and this includes his first grandchild, a granddaughter; she’s in for quite a treat.

You are reason enough

Posted on by
2

There is little joy in loss and lots of pain; the absence of joy and the presence of pain can feel endless, and here is where we need to be careful.

The realities of life will please us and disappoint us simply because they are the realities of life. Companies promising a lifetime of employment have the capacity to without warning reverse field and cut you loose; people who pledge their undying love and allegiance to you have the capacity to do the same. Does this mean we give no company or person a chance? I don’t think so. If there is the chance of a hoped for lifetime connection it will never happen if any of us close the door on the possibility.

But protect yourself.

One way of protecting yourself revolves around discovering, if you’ve not done so already, that who you are, your life is reason enough to get up and live and enjoy your day. When loss strikes and guts you out of the blue and leaves your skin chilled and your heart shivering, you are still there and still alive and while life in the moment you’re in may be a terrifying place to be, keep breathing and don’t give up.

Obviously I am speaking from experience. The specifics of my experience, at least for this missive, aren’t important. What is important is this. Who you are is truly enough reason to not just live, but to give yourself permission to enjoy your life. The loss of any person, place or thing does not deserve so much control over you that it robs you of your right to enjoy your life. And hell, there is no reason to feel guilty by moving on. After all, the person, place or thing that left your life chose to do so; guilt didn’t stop them. Don’t let it stop you.

Misplaced guilt deserves no say over any life.

 

BIANYS ignores its members rights & more

Posted on by
1

The Brain Injury Association of NY State will not support the rights of brain-injured New Yorkers to be informed of the results of the complaints they file through the joint BIANYS-NYS Department of Health TBI Waiver Complaint line. The DOH refuses to tell complainants the results of their complaints. BIANYS President Marie Cavallo and BIANYS Executive Director Judith Avner have chosen to ignore a September 14 email sent to them by this writer on behalf of the Kahrmann Advocacy Coalition, the largest advocacy group for brain injury survivors in the state, which read exactly as follows:

Please note that many are copied and blind-copied on this email, including quite a few BIANYS members who are told by you that BIANYS is the leading advocacy organization in the state.

We have one specific question and would like a direct answer to this specific question. Anything less and we will continue to conclude BIANYS does not believe TBI Waiver complainants should be given the full results of their complaints.

Does BIANYS believe TBI Waiver complainants should be given the full results of the complaints they file through the TBI Waiver complaint line current answered by BIANYS staff? Yes or NO

Keep in mind, a large number of people, including your members, are watching this email and awaiting your answer.

Peter Kahrmann, KAC Founder

Last I knew BIANYS had less than 400 members, however, a significant number of those members also belong to KAC, including me. So, it is a statement of fact to say BIANYS refusal to even answer the email is, once again, another example of BIANYS (which falsely claims to be the leading advocacy organization in the state) ignoring  the rights its own members and the rights of all brain-injured New Yorkers and their families.

So far, the BIANYS board of directors has done nothing to address this.

Brain-Injured NYers outrank Michael Kaplen’s hissy fits

Posted on by
Reply

The New York State Traumatic Brain Injury Services Coordinating Council this month responded to the news that the lives and homes of brain-injured New Yorkers are in danger because of the state’s Department of Health by immediately adjourning their meeting.

No council member said a word when they were told  a federal judge protected the life of a brain-injured senior by blocking the DOH’s attempt to end her services and collect $24,000 in back housing subsidy from her.  No council member said a word when told that the DOH has been conducting a statewide campaign  to either end or slash services and housing subsidies to brain-injured New Yorkers, even though doing so puts people’s lives and homes at risk. No council member said a word when told that brain-injured New Yorkers who file complaints related to the TBI Waiver are never given the results by the DOH. Not surprisingly, this writer received written notice from the DOH yesterday denying my Freedom of Information Law request to see the results of the complaints I’ve filed. No council member said a word when they heard that the DOH has yet to provide them (or anyone for that matter) with a written policy to memorialize the verbal directive blocking waiver providers from advocating for their clients at Medicaid Fair Hearings, an action that also puts brain-injured New Yorkers at risk.

Instead, the council, at the behest of its perpetually self-absorbed chair Michael Kaplen, adjourned the meeting.

Now, do I actually think that no council members care about the issues raised above? No, I don’t think that at all. In fact some do care and care very much. Then why their silence? I think to some extent the answer rests in the understandable reluctance to deal with Kaplen’s outbursts of temper, his hissy fits.

Kaplen reminds me of the kid in the schoolyard who always throws a hissy fit when he can’t have his way. I was in a Brain Injury Association of NY State (BIANYS) board meeting once when Kaplen, angered that some in the meeting did not agree with him that a board member should remain on the board even though he didn’t attend meetings, proceeded to raise his voice, wag his finger, and threaten to  go around the table and embarrass everyone in the room. It will surprise no one to learn I verbally stepped into him telling him  he was out of line threatening people simply because they didn’t agree with him. People were so upset by his behavior that the meeting took a break and one board member, a brain-injured survivor like myself, was so upset she was trembling.

Kaplen is known for his hissy fits.

This TBISCC meeting was no different. Council member Barry Dain, as good and decent a person as there is in the field of brain injury, found himself dealing with a Kaplen hissy fit when he shared an issue that had surfaced with some providers about perceived inequities in surveys conducted by the Office of the Medicaid Inspector General (OMIG). Kaplen appeared to be trying to shut Dain down by venting his anger and frustration with the state’s Provider’s Alliance – a group of 40 to 50 TBI Waiver Providers – when, as Dain patiently explained, he was not representing the Provider’s Alliance.

In the council meeting prior to this one, Kaplen got himself worked up into a hissy fit when two council members, Dain and Bill Combes, advocated for the right of a brain-injured New Yorker in attendance to speak before the end of the meeting. In a moment best described as an equal mix of comical and, quite frankly, pitiful, Kaplen accused his two colleagues of trying to stir the pot.

It is not surprising that the council’s assistant chair, Judith Avner,  did not seek in either instance to rein Kaplen in, after all they’ve been at the head of the table for years, both on the council and BIANYS, and that is part of the problem. Avner is the executive director of BIANYS, Kaplen its past president.

If brain-injured New Yorkers are going to be given the priority they deserve by groups like the council, members of these groups must step up and stomp out those who seek to control them by throwing hissy fits. Council members cannot afford to cower or respond in silence to Kaplen’s hissy fits. Hissy fits are like any behavior, as long as they get the person’s desired outcome, they won’t stop. 

When groups like the council are told the lives and homes of brain-injured New Yorkers are at risk, they can’t respond by adjourning the meeting because they are afraid of someone’s hissy fits. Whatever challenge one has to face  internally in order deal with a hissy fit pales in comparison to the challenges being faced right now by too many brain-injured New Yorkers because of the DOH.

NYS Brain Injury Association & Council stand against rights of brain-injured New Yorkers

Posted on by
Reply

New York State’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council are not interested in defending the rights of brain-injured New Yorkers.

  • Brain-injured New Yorkers who file complaints related to the TBI Waiver are never informed of the results by the state’s Department of Health. Both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position. 
  • Waiver providers are not allowed by the DOH to advocate for brain-injured New Yorkers at Medicaid Fair Hearings; both BIANYS and the TBISCC are well aware of this; their refusal to address the matter reflects their position.
  • The assault on housing subsidies being inflicted by the DOH on brain-injured New Yorkers, a campaign that puts some at risk for homelessness and threatens the lives of others.  In one instance a federal court judge had to step in protect the life of one brain-injured senior from the DOH Campaign. Both BIANYS and the TBISCC are well aware of the DOH housing-cuts campaign; their silence on the matter reflects this position.

Both groups have been asked repeatedly to address all these  issues and while the TBISCC gives intermittent lip-service to the Medicaid Fair Hearings question, BIANYS – which proclaims itself the leading advocacy organization in the state for brain-injured New Yorkers – remains stone silent. At the beginning of yesterday’s council meeting Judith Avner, assistant chair of the council and executive director of BIANYS, said the council needed to hear what the actual DOH policy was regarding fair hearings. The DOH has for months been saying they’re working on a policy. One might think Ms. Avner’s statement was  reason for hope but when DOH official MaryAnn Anglin arrived at the meeting later no council member, including Ms. Avner, asked her about the fair hearing policy.

It seems one has a better chance of nailing Jell-O to the wall than getting the council to offer the DOH  proposals that have anything whatsoever to do with the TBI Waiver.  It had been proposed by this writer on behalf of the Kahrmann Advocacy Coalition the the council formally recommend that all DOH staff, contract and otherwise, be required to take training in brain injury now offered by BIANYS. DOH staff and contract staff involved with brain injury receive no mandatory training in the brain or in brain injury. While BIANYS is not the advocacy organization it claims to be, it is, without question, the best educational resource for understanding brain injury in the state. The council can’t even make this recommendation!

The DOH’s intentions are clearly sinister. One can only conclude that the reason for blocking waiver providers from supporting their brain-injured clients at Fair Hearings is to undercut the client’s ability to prevail, thus making it easier for the DOH to kick them off the waiver. One can only conclude the reason complainants are not given the results of their complaints is a reflection of the DOH covering its, well, ass. One can only conclude the reason the DOH is kicking as many people off the waiver and out of their homes as possible is to save money, even though this literally risks human life.

The silence of BIANYS and the TBISCC tells us both groups agree with the DOH, at least the leadership of both groups does.

When this writer spoke during the public comment period at yesterday’s meeting and told the council that there are brain-injured New Yorkers whose lives are at risk because of the actions of the DOH and the silence of BIANYS and the council, council chair Michael Kaplen responded by immediately adjourning the meeting.

BIANYS and TBISCC leadership needs to either step up or step out, and soon.