Category Archives: TBI Waiver

BIANYS is not an advocacy organization

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The Brain Injury Association of NY State is not an advocacy organization despite its claim to the contrary.

Without question they are a superb source of education when it comes to brain injury and the NYS Department of Health and providers statewide would be wise to learn from them, but they are not an advocacy organization and should stop saying they are.

The Oxford English Dictionary, considered the most comprehensive English language dictionary in the world, defines advocacy as “the giving of public support to an idea, a course of action or a belief.”  I can’t think of a single public stance or public statement BIANYS has made advocating for brain injury survivors in the state, certainly not when the advocating would require them to hold the NYS DOH accountable for it’s deplorable treatment of brain injury survivors, particularly brain injury survivors on the state’s TBI Waiver.  While BIANYS leadership will deny they are in bed with the DOH, their actions or lack thereof indicate otherwise.

Consider the following:

  • If you read through past BIANYS newsletters you’d be hard pressed to find so much as a blurb about anything they are actively advocating for. BIANYS leadership will tell you, they’ve told me, that they have their way of doing things and they do advocate. I may be the first to notice the phrase, stealth advocacy. If those you claim to care about and serve are never informed of your advocacy efforts, then something is deeply wrong.
  • BIANYS was dead silent when it came to light in 2008 that Timothy J. Feeney, then the most powerful force in the TBI waiver, was misrepresenting his credentials to all comers, claiming to have a valid PhD and valid masters degree when he had neither. At the time DOH would close a provider down or stop a provider’s admissions solely on Feeney’s say so. I remember Feeney telling one provider that if he learned they were including cognitive therapy in their program he’d close them down. A statement like that makes incompetence look like expertise.
  • When the Feeney situation was brought to BIANYS’s attention by this writer (I was a BIANYS board member at the time) BIANYS made it clear they would do nothing. In fact, one board member who I will not identify, wanted to know what difference did it make if someone was lying about their credentials if they did good work.
  • BIANYS refusal to address the Feeney issue and advocate for the rights of brain injury survivors, their families and providers across the state led me to resign from the board. It was as if I’d part of an organization that claimed to stand against anti-Semitism yet fell silent when it was informed someone in power was abusing the trust and, in this case, clinical safety, of Jews.
  • When it came to light last year that the DOH issued a directive blocking service coordinators from supporting waiver participants at Medicaid Fair Hearings, a directive that can only be seen as an attempt to deny waiver participants real justice, BIANYS uttered not so much as a syllable.
  • Then, of course, there is the matter of the  TBI Waiver complaint line which is answered by BIANYS. BIANYS has been complicit in a TBI Waiver grievance process that does not inform complainants of the results of their complaints. Once a complaint is “resolved” by the DOH,  BIANYS receives written notice from DOH letting them know that the complaint’s resolution:  resolved, unfounded etc. BIANYS staff are not even permitted by BIANYS leadership to inform complainants of these results.

A silent advocate is not an advocate. If BIANYS does not believe me, perhaps the words of these three folks might enlighten them (italics are mine).

Dr. Martin Luther King Jr. “Our lives begin to end the day we become silent about things that matter.”

Ruth Messinger (currently the President and CEO of American Jewish World Service). “If there’s one thing that Jews understand, it’s the danger of silence from the international community.”

Thomas Jefferson. “All tyranny needs to gain a foothold is for people of good conscience to remain silent.”

In the meantime, BIANYS should no longer say they are an advocacy organization – until they are.

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.

NYS TBI Council Going to Waste

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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.

NYS TBI Waiver complaints: the fix is in

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If you are on the NYS Traumatic Brain Injury Waiver and you file a complaint with the NYS Department of Health you will never be told the outcome. The DOH has it fixed so they don’t have to tell you. Their complaint line agreement  with the Brain Injury Association of NYS does not require them too to tell you. More moral and ethical corruption from the state’s leading renegade agency which makes a laughing stock of the new governor and the new DOH commissioner.

If you are one of the nearly 3,000 New York adults on the waiver you are told to call the waiver complaint line  fielded by the Brain Injury Association of NYS. BIANYS staff will always treat you with respect and compassion. However, that might be the end of your respect and compassion experience unless of course someone from the RRDC’s (Regional Resource Development Center’s) office calls you to ask about your complaint and there too, you might, though not always, get treated with compassion. RRDCs across the state are contracted with DOH to oversee waiver providers and participants in their respective regions.

After your talk with someone from the RRDC’s office (there are many instances where you don’t even get that much attention), all compassion and respect stops. You will never learn the outcome of your complaint.  Several sources around the state have told this writer that the DOH makes it clear they want the complaints minimized if not ignored and abandoned altogether.

This is ethical corruption pure and simple and it needs to stop. Groups like the TBISCC, BIANYS and DOH need to address this as soon as possible.

The following is the actual complaint line protocol:

TBI Complaint Line Protocol – Updated 1/2010

1. BIANYS conducts complaint intake and completes the BIANYS portion of the complaint form.
2. BIANYS emails complaint to DOH TBI Waiver Program.
3. DOH staff emails the complaint intake form to RRDCs. (If determined a Serious Reportable Incident, DOH staff contacts RRDS immediately by phone and check the  appropriate SRI box on the form. DOH staff will follow up by emailing the complaint intake form to RRDS.) In those instances where the complaint is directed at the RRDC, DOH assumes responsibility to investigate.
4. RRDC confirms receipt of the complaint with DOH.
5. RRDC staff contacts the participant within two business days that the complaint has been received and investigation is in process.
6. RRDS investigates the complaint and completes the RRDS portion of the complaint form.
7. RRDS returns the completed form back to DOH within 30 days.
8. BIANYS will be notified when the complaint is closed via email.
9. BIANYS will provide DOH a monthly report of complaints.
10. DOH waiver staff meets monthly to review open complaints & discuss outstanding issues.

Essential Elements of RRDC Investigation

a) Provide a brief description/summary of the complaint.
b) Provide pertinent demographic information of the participant and any other people related to the complaint.
c) Provide a summary of all completed interviews or statements of fact.
d) Provide a summary of documents and any evidence reviewed.
e) Provide a description of your findings and analysis of the event.
f) Describe all corrective actions taken.
g) Describe the current status of the complaint and/or participant and any conclusions indicated by the investigation. The Complaint Form must indicate the final status and disposition of the complaint e.g. allegation/complaint confirmed/substantiated, allegation disconfirmed
h) Complaints are to be maintained in a regional and DOH database and reviewed on an annual basis to establish trends, patterns and systemic issues.

 

NYS DOH Threatens Advocate’s Home

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In what can best be described as an astonishing but not-surprising act of callousness, the NYS Department of Health has decided to take away a housing subsidy it already approved for a brain injury advocate. They say they are doing this because of paperwork mistakes – paperwork mistakes they made.

It will come as no surprise that I am the advocate in question and it will certainly come as no surprise that Maribeth Gnozzio aka Maribeth Janiszewski of New Jersey corruption fame played a role in the decision.

Here’s the background. I am on the state’s Traumatic Brain Injury Waiver. Earlier this year with the help of my case manager, they are called service coordinators in TBI Waiver parlance, I applied for a housing subsidy. The application made its way through the process and the DOH approved it. However, the DOH  approved the housing subsidy under the states’ Nursing Home Transition Waiver, or the NHTD Waiver as it is commonly called. Now, because of their mistake (Was it a mistake? Or was it a set-up as some are already asking) they’ve decided I’ll pay for their mistake and lose the subsidy.

I’ve been told my subsidy will end as of July 31st and, well, that’s just too bad as far as DOH is concerned. When my case manager had a phone conference with them, who was on the call, making sure no flexibility was allowed? Gnozzio.

When the idea of my transitioning from the TBI Waiver to the NHTD Waiver was proposed, the answer was sure, he can transition, but he still loses the subsidy, too bad if he loses his home.

They should stop calling themselves the Department of Health because health is the last thing they’re concerned with. Maybe they should just call themselves, the Department.

It seems likely I will be approved for a Section 8 subsidy in the next few months, unless, of course, the DOH can find a way to sabotage that too. Bridging the gap between subsidies is the dangerous part of the equation.

If you are wondering if the DOH’s behavior  is going to make me back off on my advocacy, not a chance. After all, I’ve been shot in the head at point blank range. I’m not about to be intimidated by a renegade state agency nor some pitiful corruption story from New Jersey.