NYS TBI Council Going to Waste

For more than a decade now the NYS Traumatic Brain Injury Services Coordinating Council has offered virtually no proposals to the state’s Department of Health and the DOH has not asked for any.  Apparently it doesn’t much matter that “Under Article 27-CC of the New York State Public Health Law, the New York State Traumatic Brain Injury Services Coordinating Council is mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.”

Instead, more than 10 years of TBISCC meeting minutes tell us the council – under the leadership of first Charlie Wolf and now Michael Kaplen – has had a wide range of important presenters but failed to come with any real comprehensive proposals for the DOH. The list of presenters is indeed impressive: VESID, NYS Education Department, Office of Mental Heal, NYS Crime Victims Board, Office of Alcohol and Substance Abuse Services, OMRDD (now OPWDD), Office of Advocates for People with Disabilities, Mt. Sinai School of Medicine, NYS Division of Veterans Affairs, Unity House, NYS Coalition on Domestic Violence, the Brain Injury Association of NYS and more. But to what end? What is the point?

All this and more makes one wonder why the council has never come up with any comprehensive proposals that include “long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” Is the DOH wielding undue influence behind the scenes? Are there conflict of interest at play that are problematic? Are some members of the council (not all I assure you) there for rather self-serving reasons. Question: Who nominated Charlie Wolf for council chair? Answer: Charlie Wolf!

The TBISCC has an important voice and an important role to fill. It can have and should have an influential presence.

There have been moments, albeit rare ones, when the council has shown signs of life and self-awareness.  Minutes from the September 10, 2002  reveal  “(t)here was strong concern voiced by many members that the Council has lost its charge and needs to re-think what its purpose is.”  Minutes from a September 9, 2003 meeting say the council drafted a letter to then DOH official Betty Rice expressing the council’s dissatisfaction “with not being allowed to review (TBI Waiver Manual’s) revisions.”

Then, like now, the DOH is inexcusably insular and, frankly, arrogant. Here is a state agency charged with overseeing a waiver for people with brain injuries yet they have no required brain injury training for any of their employees, contract or otherwise, and clearly no intention of availing themselves of the huge swaths of knowledge about the subject that has always been available to them with the TBISCC, the Brain Injury Association of NY State (which provides superb training on brain injury), the Alliance of TBI Waiver Providers and more.

My suggestion to the council is to prepare and make some comprehensive proposals, publicize the proposals you make and publicize the response you get from the DOH. Start with a Facebook page, and then expand.

NY State DOH Evasive with State’s Brain Injury Council–Part I

The New York State Department of Health waited until the day before  the TBISCC (Traumatic Brain Injury Services Coordinating Council) April 14 meeting to inform council chair Michael Kaplen that  no DOH officials would be available to  explain why service coordinators are being told – by the DOH – that they must side against their clients at Medicaid Fair Hearings.  Never mind that the issue had been on the council’s public agenda and never mind that the council had requested presentations on the fair hearing issue at their last meeting.

““I was informed yesterday by the department that although we’d requested presentations at the last meeting as part of today’s program and although those items were in our agenda and in fact was in the published agenda by the health department originally, no one from the health department was available,”  Kaplen said.

Service Coordinators are the case managers for people with brain injuries who are on the TBI Medicaid Waiver. Some brain injury survivors live with communication or processing deficits as well as memory deficits; sending them into a Medicaid Fair Hearing without the support of their service coordinator is like sending a lamb to slaughter, and the DOH knows it.

According to the DOH’s own website, “The TBISCC is charged with recommending to the 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.”

The Unwritten Directive

In a telephone conference last year DOH official Maribeth Gnozzio issued a directive saying service coordinators were to side with the DOH if they appeared at Medicaid Fair Hearings. The DOH has no written policy or regulation in place and DOH officials have been careful not to put the directive in writing. Sources say they DOH claims says because service coordinators work for providers who are approved to provide waiver services by the DOH, there is a conflict of interest if they side with the participant. Moreover, because service coordinators get paid for their work, advocating for a waiver participants is self-serving. Both positions have no merit. First of all, the very nature of being a service coordinator requires  advocating for your client. The notion that getting paid for their work is a conflict of interest would be laughable were it not so destructive. Were that the case, doctors, physical therapists, speech therapists, lawyers, psychologists and psychiatrists better not recommend treatment either because they’re licensed by the state too and get paid for their work.

Although Kaplen said the service coordinator “is the individual who possesses the most relevant facts about the individual who is contesting the Medicaid services and who is in the best position to provide at times helpful information to that person at the (Medicaid Fair)  hearing” he offered a startling and rather  Palinesque form of reasoning in support of the DOH position: “You have on the other side of the fence the conflict in regard to whether or not it’s appropriate for that individual (meaning the service coordinator) to be an advocate for that individual (mean the waiver participant) because  they are technically within the same department where the contest is taking place. I understand that conflict.” If he means a service coordinator is a member of the DOH itself that’s going to come as one heckuva surprise to service coordinators around the state, not to mention their employers, who are not the DOH.

To his credit however, Kaplen said, “At  a minimum the service coordinator must be permitted to present factual information at this hearing that the individual can’t possibly present on their own. That this individual needs to rely upon to effectively make their own case.”

Anglin responded by saying, “I appreciate that input. Maybe by the next (council) meeting (in June) we’ll have that guidance out there and we’ll be discussing that guidance.”

Kaplen then asked, “Is this going to be in the form of an official rule allowing for a period of public comment?”

Anglin said, “No. That would be a regulatory change and we’re not proposing to change any regulations. Basically it’s am interpretive guidance on what the current regulations are.”

In many areas of the state, including, but not limited to Long Island and Western New York, waiver providers have been told by the DOH that they cannot support brain injury survivors in fair hearings, this coming at a time when the DOH has ramped up efforts to either discharge waiver participants or cut back on their services. By the time next June rolls around, who knows how many more lives will be damaged by the DOH directive.

During the public comment portion of the meeting, with DOH official Maribeth Gnozzio present,  this writer said the following:

A Response and a Moment of Silence

“Speaking on behalf of the nearly 1,000 members of the Kahrmann Advocacy Coalition, this  has been a hot button issue for quite some time. We filed, I filed a FOIL request with the DOH asking for any regulations, policies, memos, anything in writing, anything, related to their policies on fair hearings. What we received and all we received was a slender binder about how to train an administrative law judge. It’s a curious thing to me because earlier on (during the meeting) Mary Ann Anglin was talking about what was going on (with the drafting of the guidance referenced above) would not require public comment because it was an interpretative guidance of a regulation. Well, if it’s an interpretive guidance of a regulation that would indicate there’s a regulation in existence that is related to Medicaid fair hearings but the (DOH’s) FOIL response only got a binder on how to train an administrative law judge.

It is important that you as council know what we as coalition are hearing. We know that there was a phone conference with Ms. Gnozzio and RRDCs (Regional Resource Development Centers) throughout the state in which the RRDCs were instructed, told, that service coordinators are not permitted to advocate on behalf of participants in fair hearings. Several emails went into Ms. Gnozzio and she responds to nothing nor does she respond to phone calls.

What’s curious to me is when the department is talking about writing a directive, coming up with a policy to address this, there was already a verbal directive. We have members from around the state, they’ve been told by Ms. Gnozzio through the RRDCs that they can’t do this.”

At this point Mr Kaplen asked that I not make this personal to which I said, “It’s not personal. It’s a statement of fact. It seems highly arbitrary and capricious that these directives were given out… We, at this point, experience this as a willful effort to get as many people off the waiver as they possibly can.”

Council members and DOH officials responded with absolute silence. Silence from members of an evasive state  agency that is supposed to care about individuals with brain injuries and silence from a council that is charged with advising the DOH on what the DOH can do  “to meet the needs of persons with traumatic brain injury and their families.”

 

Stay tuned for Part II