Category Archives: New York State Department of Health

Some thoughts on NY State’s TBI Council

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For several reasons, immoveable objects all, I will not be able to attend the meeting this Friday of the New York State Traumatic Brain Injury Services Coordinating Council (TBISCC). Given this, I thought I might offer a few thoughts about the council (the council agenda will be presented at the end of this missive).

There is no doubt that the TBISCC, were it blessed with healthy leadership, could play a very healthy role in the lives of New York State residents who live with brain injuries. There is certainly no harm, nor do I think anyone in the state’s Department of Health would be upset, were the council to live up to its mandate and offer healthy proposals so that the state might better support the right of those living with brain injuries to live as independently as possible.

In order for this to happen, the council must free itself of the self-absorbed rather unpleasant likes of Michael Kaplen. As an earlier piece in this blog explains, Kaplen’s term on the council expired in 2004 . This fact has not stopped Kaplen from acting as the council’s chair.  The council’s vice-chair, Judith Avner, saw her term expire in 2003, yet she too remains on the council.

Kaplen and Avner are wrong to continue in their current posts when their terms have long since expired. Council members need to step up and address the issue. This writer, as readers of this blog already know, thinks Kaplen needs to leave the world of brain injury altogether, the sooner the better. However, the council would benefit from Avner’s continued presence as a representative of the Brain Injury Association of NY State. She is their executive director. While I do not think BIANYS members ought to be on the council proper since BIANYS receives funding from the New York State Department of Health, I think it is critically important that BIANYS have a firm seat at the table as a non-voting council member, much like various state agencies do.

There are some good people on the council and, though we’ve clashed from time to time, there are some good people in the NY State DOH. This next meeting will be a litmus test for all. Will they allow Kaplen to just push on forward as if he is still the chair and say nothing? Or, will they hold him accountable, and dismiss him from the council, or, document he has been reappointed by God knows what fool, and then hold elections for the chair and vice-chair of the council?

If the council acts as if its business as usual, and Kaplen is allowed to remain at its head, then every single person in the room has brutally betrayed the very people they are pledged to serve, New York State residents who live with brain injuries and their families and friends.

 

 

TRAUMATIC BRAIN INJURY SERVICES COORDINATING COUNCIL

NYS Department of Health

875 Central Avenue, Albany, New York

(Main Conference Room)

Friday, April 20, 2012

10:30 AM – 3:30 PM

AGENDA

10:30am – 10:45am Welcome

Introduction of New Member

Review and Approval of Minutes from

September 12, 2011 Meeting

10:45am – 12:00pm New York State Five Year TBI Action Plan

Carla Williams, Deputy Director, Division of Long Term Care, NYSDOH

12:00pm – 1:15pm LUNCH (Members on their own)

1:15pm – 2:00pm Impact of MRT proposals on TBI and NHTD waivers:

Medicaid Managed Care and Repatriation of individuals served out of NYS

Jason Helgerson, Deputy Commissioner, Office of Health Insurance Programs and NYSDOH Medicaid Director

2:00pm – 2:30pm Update on Stakeholder Committee Discussion of Coordinated Medicaid Managed Care Program for Individuals with TBI

Joseph Vollaro, PhD.

2:30pm – 3:00pm Subcommittee reports

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

3:00pm – 3:30pm Public Comment/Summary/Next Steps/Adjournment

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.

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.

 

Brain-Injured NYers outrank Michael Kaplen’s hissy fits

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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 DOH considering the possibility of justice

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The NYS Department of Health says it will consider telling those who file complaints related to the state’s TBI Waiver  – primarily people with disabilities who live with brain injuries -  the results of their complaints. Currently complainants are never told. In fact, several RRDCs (Regional Resource Development Centers) throughout the state say they’ve been directed by DOH not to tell complainants the outcome of their complaints. RRDCs are agencies under contract with DOH to oversee waiver providers and participants.

On June 30th this writer sent an email to NYS Deputy DOH Commissioner Mark Kissinger which read, in part, “On behalf of Kahrmann Advocacy Coalition members and all those who care about brain injury survivors in the state, I am asking you to immediately issue a directive requiring that those who file complaints related to the TBI Waiver are to be informed of the results of their complaint within 60 days of filing the complaint.  Right now complainants are never informed of the outcome of their complaints – never.”

Kissinger responded via email saying, “I will have staff look into your suggestion and get back to you within a reasonable period of time.” I’ve heard nothing yet. It takes more than two weeks to decide if justice should be served?

I wonder what DOH staff have to look into? Are people really sitting around a table somewhere wondering whether complainants should be told the outcomes of their complaints? Who would argue that they shouldn’t? Well, the DOH for one.  Groups like the state’s Traumatic Brain Injury Services Coordinating Council and the Brain Injury Association of NY State need to publically speak up. Any and all groups who say they are committed to the notion that people with disabilities deserve equal justice under the law and equality on the regulatory front should be outraged, and outraged so others notice. Silence is not an option for them. To remain silent is to support the DOH’s continued assault on the rights of people who live with brain injuries.

If you want to let DOH know your feelings on this, you can write to Mark Kissinger at mlk15@health.state.ny.us or call his office at 518-402-5673.