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

 

Notes From an Advocate

The last thing you encounter as an advocate is a shortage of dishonesty. It comes at you from every direction.

As readers of this blog know, the New York Department of Health has directed anywhere from eight to 18 agencies across the state to transfer brain injury survivors living in the community from their care even though many of the providers have adhered to all DOH requests, even though the lives of the survivors will be brutally disrupted and traumatized, and even though some survivors will likely find themselves back in nursing homes because there are no agencies in their area to pick up the slack, and even though the DOH has not talked to the survivors about this.

DOH Deputy Commissioner Mark Kissinger and his staff held  a telephone conference yesterday with the leadership of the TBISCC (Traumatic Brain Injury Service Coordinating Council). The TBISCC is headed by Michael Kaplen (former president of the Brain Injury Association of NY State and a man who has fought hard for the rights of brain injury survivors for years) and comprised of a group of people whose hearts and souls are committed to fact that all people living with brain injuries deserve a chance to reach their maximum level of independence. While I was not present at the meeting, I can tell you from firsthand experience that Kaplen and Council members advocate for survivors with all their might. So does the Brain Injury Association of NY State.

During this meeting Kissinger told the council that something along the lines of 63 brain injury survivors would have their lives disrupted by the DOH directive. He is misinformed or lying. Sources tell me more than 100 survivors in the New York City area alone will be effected by this and there is non-NYC provider faced with having to discharge 50 survivors. In other words, the number of brain injury survivors who will have their freedom of choice, meaning their independence ,meaning their rights as American citizens denied, is probably in the hundreds, if not more.

Yesterday morning I called Kissinger’s office and spoke to a person named Sheri. I told her that as head of the Kahrmann Advocacy Coalition I wanted to schedule a meeting with Kissinger and do so before we say, organize a sit-in in the lobby and bring the media. She said she would get back to me and she did, by email, later in the day, saying they were working on putting together the “phone conference” I requested with Kissinger. I wrote back reminding her – as if she needed reminding – that I did not ask for a phone conference, I asked for an in-person meeting.

As to why this is all happening? Here’s a thought. The DOH directive (see recent blog pieces for more complete explanation) will likely send quite a few people back into nursing homes. Given that some areas of the state will be left without agencies to provide community support staff, other survivors won’t be able to be discharged from nursing homes. Take these observations and connect them to this one; NY’s Nursing Home Transition Waiver is designed to allow people to leave nursing homes and return to life in the community. Is is possible this directive will short circuit that? If so, would it not be reasonable to ask if maybe the Nursing Home Lobby is behind all this?

Anyway, more notes to come. Keep the faith.

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