Notes on NYS’s TBI Council

You simply can’t make it up.

The Traumatic Brain Injury Services Coordinating Council meeting Monday was chaired by Michael Kaplen who flashed some anger during the meeting which would have been laughable were it not so disrespectful of council members and, frankly, brain injury survivors. It earned Kaplen the crown for the meeting’s most despicable moments. On top of that, the NYS Department of Health’s report on the status of the state’s TBI Waiver is something you would have missed if you made the mistake of blinking.

Kaplen’s inexcusably despicable moments came in the wake of an attempt by a brain injury survivor in the audience to ask a question. Kaplen interrupted the survivor telling him there was a protocol which required members of the public to wait until all council members had asked their questions. Kaplen, who is forever proclaiming himself  an expert in brain injury, seems to have forgotten that some who live with brain injuries have memory challenges and may not remember  their questions. When council member Bill Combes of the state’s Commission on the Quality of Care offered to cede his question time to the survivor, Kaplen became visibly angry with Combes. Kaplen was equally angry with council member Barry Dain who pointed out that survivors of brain injury are often faced with cognitive challenges that include memory deficits.

Kaplen’s finger-wagging anger is childish in the best light, bully-like in the worst, and clearly not the kind of behavior one wants in a council member much less the council’s chair.  As for the protocol he referenced, neither the council’s bylaws nor Robert’s Rules of Order – something council bylaws require the council follow – preclude the  council from allowing members of the public to ask questions during the meeting. Kaplen apparently does not feel he is beholden to Robert’s Rules which require that remarks by council members “be courteous in language and deportment.”

When the DOH’s Charlotte Mason reported on the status of the TBI Waiver she said all things were pretty much the same as they were at the time of the last council meeting, entirely omitting the fact the DOH ended the statewide neurobehavioral project with no discernible transition plan in place, leaving everyone with no concrete reason to believe plans have been made to continue those badly needed services in any shape, manner or form. Moreover, Mason did not mention the DOH’s continued assault on services being received by waiver participants nor what some consider a willful effort to discharge as many people from the waiver as possible. Other than council vice-chair Judith Avner asking about the end of the neurobehavioral contract and Combes asking if the DOH had any information about service coordinators being prevented from siding with their clients at Medicaid Fair Hearings, council members asked not a single question about the TBI Waiver.

The DOH’s Mary Ann Anglin answered Combes’ question by indicating a document was being prepared addressing the fair hearings matter which was indeed the very same thing the DOH said months ago.

Is it any wonder members of the real advocacy community and some members of the council itself are clearly frustrated with a council that seems to do just about everything but follow its mandate which, according to its own bylaws, includes “recommending to the (NYS) Department (of Health) long range objectives, goals and priorities. It shall also provide advice on the planning, coordination and development of services needed to meet the needs of persons with traumatic brain injury and their families” and a council that seeks to anything but hold the DOH accountable for its actions?

While both Bill Kraus, acting director of the NYS Division of Veteran’s Affairs, and Tim Donovan of the SUNY Youth Sports Institute, offered impressive presentations about how their respective groups were addressing the challenge of brain injury, Kaplen questioned both men choosing to focus on what they weren’t doing rather than giving them well-deserved credit for the good work they are doing.

During the public comment session at meetings end this writer asked two things of the the council on behalf of the Kahrmann Advocacy Coalition:

  1. To review the current TBI Waiver complaint agreement  between the DOH and the Brain Injury Association of NY State. The current protocol does not require the DOH to inform complainants of the outcome of their complaints. To my knowledge, complainants are never informed. The current complaint line protocol  is absent all presence of justice and is morally and ethically corrupt.
  2. To hold public hearings and invite survivors of brain injury, their family and friends, as well as providers of TBI Waiver services, to report to the council on what they are experiencing with the TBI Waiver.

This writer has filed a FOIL request for all council minutes. It will be interesting to learn how much recommending the council has actually done under Kaplen’s watch and under the watch of his predecessor, Charles Wolf. How many proposals has the council actually presented to the DOH and what has been their fate? Those of us who live with brain injuries as well as our loved ones and the providers across the state who try to help us have a right to know.

It was, I am sure, no coincidence that no copies of meeting minutes were made available for the public at Monday’s meeting. You can request copies of the TBISCC minutes by emailing Cheryl Veith at the DOH: cld02@health.state.ny.us You can also ask that you be put on the mailing list to receive notice of upcoming meeting and copies of the agendas as the become available. The next TBISCC meeting is September 12.

 

NYS DOH ends contract with Feeney

It seems the efforts of this pen, the Kahrmann Advocacy Coalition, and others have finally paid off. Sources say the NYS Department of Health has cancelled its contract with Timothy J. Feeney et al effective the end of this month.

This writer revealed in 2008 that Mr. Feeney  misrepresents his educational credentials. He claims to have a valid masters degree and PhD when he has neither. Over the past three years this writer along with other real advocates – not the lip-service advocates in the state who seek headlines based on words not actions – have worked hard to have Mr. Feeney removed from his post in the Statewide Neurobehavioral Project, a group that was affiliated with the state’s Traumatic Brain Injury Waiver. Sources say the DOH has terminated the contract in its entirety.

Those who know me well, I mean really know me well, know I take no pleasure in Mr. Feeney’s demise nor in the demise of the other staff that worked in the project. However, like all of us, they are accountable for their choices. I am, however, very glad that survivors of brain injuries on the TBI Waiver, their families, and the many truly good providers of waiver services will no longer have to deal with Mr. Feeney. Life with brain damage is tough enough, dealing with dishonest people at the same time you are trying to learn how to manage life makes it all the tougher.

I have little doubt Mr. Feeney will continue to misrepresent himself in any venue he can. Hopefully others will be pick up where the DOH  left off and require he be honest or remove him from the field.

The NYS DOH has very little to be proud of when it comes to its oversight of the TBI Waiver; however, it can be proud of the decision to end the contract.

TBISCC Agenda for Monday, June 20, 2011

Note to blog readers: This is a public meeting. If you want to comment during public comment time at end of meeting, be sure to put your name on the public comment sheet when you arrive so you get your chance.

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

Empire State Plaza, NYS Museum Meeting Rooms A & B

(Concourse level of NYS Museum)

Monday, June 20, 2011

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome, Introduction of New Member,  Review and Approval of Minutes from December 6, 2010 and April 14, 2011 Meetings

10:45am – 12:00pm Training for Volunteer Coaches: Sports Concussion Awareness – Timothy Donovan, SUNY Youth Sports Institute

12:00pm – 12:45pm LUNCH (members on their own)

12:45pm – 1:10pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

1:10pm –1:40pm NYS Veterans’ Update on Brain Injury – Bill Kraus, Acting Director, New York State Division of Veterans’ Affairs

1:40pm – 1:45pm TBI Waiver Update-NYSDOH

1:45pm – 1:55pm TBI SCC – Vacancies/Expired Appointments – Cheryl Veith, NYSDOH

1:55pm – 2:05pm HRSA Grant Five Year Plan Update – Helen Hines, NYSDOH

2:05pm – 2:50pm Overview of Uniform Assessment System (UAS) – K. John Russell, Project Director – University at Albany, School of Public Health

2:50pm – 3:05pm Carry Over Issues from Last Meeting

3:05pm – 3:20pm Public Comment/Summary/Next Steps/Adjournment

3:20pm – 3:30pm Meeting Wrap-Up/Date for Next Meeting

Justice 1 NYS DOH 0

It took the combined efforts of the NYS Commission on Quality of Care, an RRDC (Regional Resource Development Center) with real principles, the Kahrmann Advocacy Coalition, and the threat of legal action to get the NYS Department of Health to drop its efforts to block this writer’s request for three-white noise machines needed to manage marked noise sensitivity secondary to my brain injury.

A complete recount of my efforts to get the white-noise machines and the DOH’s determination to prevent me from doing so can be read in a preceding blog post. Suffice it to say that a ruling resulting from a December 1, 2010 Medicaid Fair Hearing overturned the DOH’s denial of my white-noise machine request, telling them that they needed to consider more evidence documenting the need for the machines.

More evidence was provided and the Southern Tier Independence Center, the RRDC in my area,  sought to approve the request before the DOH’s Maribeth Gnozzio stepped in and blocked the approval. How do you spell retaliation? Try G-n-o-z-z-i-o. However, were Gnozzio the exception to the rule at DOH she’d be long gone, but she’s not, which tells us she is an example of what the rule is at the DOH, and those DOH employees who do care, are in the minority.

Once Gnozzio blocked the white-noise machine request a request for an expedited Medicaid Fair Hearing went into effect. Once that happened, and once, I am sure, Gnozzio and the DOH realized their actions would accurately be seen as retaliation, a knowing attempt to harm me, and a flat-out violation of the ADA, they backed off. Gnozzio and the DOH also realized they were dealing with an RRDC who truly does care and was not about to back off its principles for anyone.

If the DOH wants to reveal that Gnozzio is an exception to the DOH mindset or signal that it is committed to changing it’s mindset, I’ve got a two-word suggestion that would go a long way on both fronts: fire Gnozzio.

Lip Service Advocates

Even at 57 a deep sadness staggers me when I find myself realizing that the claim some make to being advocates for people with brain injuries is only true when it  makes them look good, gets them attention, and or when they and only they are calling the shots. They are the lip-service advocates, advocates when being advocates is comfortable, risk free.

Real advocates in the world of disability, and I know quite a few, Bruce Darling who heads up the Rochester, New York-based Center for Disability Rights, comes to mind, will tell you advocacy can be scary, lonely, unsettling, heartbreaking, angering, and, at times, joyous. It is, they will tell you, anything but easy. You have to be willing to go into the dysfunction storm, not flee it the moment it appears.

It is, sadly, not unique that there are those who, needing to feel a sense of control in their life, gravitate to the world of disability because large swaths of society’s so-called support systems make those of us who live with a disability controllable. Want those services? Want that wheelchair? Want that assistive technology? Want to come to our conference? Want that subsidy? Be prepared to pay the piper which, in part, will require your willingness to sing our praises, even though we don’t deserve them.

Not a price I’m willing to pay.