Category Archives: TBI

BIANYS Snubs Volunteers & Support Groups

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The Brain Injury Association of New York State refuses to reimburse its volunteers for their out-of-pocket expenses, even if it means the end of some of its support groups.

Before I continue, it is important to note that the root of this rather bewildering stance on BIANYS’s part rests with its leadership; several sources say there are BIANYS board members and others in BIANYS’s ranks who not at all comfortable with fact the group is pretty much run  by two people, Judith Avner, its executive director and Marie Cavallo, its president.

No organization runs well under the thumb of one or two people.

The genesis of this essay goes like this. Beginning in 2008 I volunteered to facilitate weekly support groups in Albany for BIANYS.  BIANYS covered the necessary liability insurance and all was well. At the time, my round-trip commute to the Albany support group site was 50 miles and I was able to afford the gas. Late last year I had to move from my rental and as a result, moved to a place 75 miles from Albany. I had no intention of letting the distance stop me from facilitating the groups but the now 150-mile weekly round-trip (600 miles a month) became financially unwieldy and the group and I reached out  to BIANYS (Avner and Cavallo) for help with the mileage, i.e., the cost of gas. BIANYS reimburses its staff at a rate of 50 cents a mile. I was told things were tight financially and if they were to help this group with expenses maybe the other volunteers who facilitate groups across the state would expect to be reimbursed for their expenses as well (I am fighting off the urge to say, Well, duh.).

Group members then began an email campaign writing to BIANYS (meaning Avner and Cavallo), telling them how important the groups are to their lives, and suggesting that BIANYS help with half its normal mileage reimbursement rate which would mean $150 a month for the 600 miles rather than $300. Finally, Avner and Cavallo agreed to help for three months at which point they would review things.

Well, as the end of the three months I approached I wrote in and group members wrote in asking for to continued help, Avner was away, Cavallo said she didn’t have the authority to approve even one check to tide the group over until Avner returned. Avner’s return did nothing. Then the story changed.  Avner and Cavallo now said they did not have the authority to approve the help in the first place and would need to refer the matter to the board (I wonder if that ever actually happened). Finally some of the groups had to be cancelled.

Facing the lack of support from the BIANYS that still likes to claim these support groups as its own, group members agreed to cut back to only two groups a month. BIANYS – meaning Avner and Cavallo – were asked, via email, if BIANYS could help with just $75 since now we were down to two groups. Avner didn’t even bother to respond to the request and Cavallo’s response was non-committal. A second email request for $75 did not get a response from either one of them.

And this is the organization that claims to be the state’s leading organization on behalf of brain injury survivors? If you believe that, write me. I know a great bridge in Brooklyn you might be interested in buying.

 

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.

 

TBISCC Agenda for Monday, June 20, 2011

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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

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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.