Silence is not an option

If you are going to truly be an advocate for equal rights there are a few things I’d like to share with you.

First, there will be times when you will be wildly unpopular. People in positions of power and those whose advocacy efforts are primarily a form of self-serving lip service will not like it when you bring their realities into the light. But, if your commitment to equal rights is sure and heartfelt, bringing their realities into the light is a must.

Second, there will be times when the facts, as you honestly understand them, will bring you to places and circumstances you wish they didn’t. Nevertheless, these are places you must go if your allegiance is to the equal rights of each and every individual. Sometimes the facts will lead you to places where you will discover people you may like are, in fact, part of the very process that is impeding or outright denying equal rights. Still you must proceed and bring the truth into the light.

Third, at times you will pay a price. Some advocates have lost their lives. Others have lost jobs, financial stability, relationships, and much more.

Fourth, find ways to replenish your spirit, your body and your mind. For me it’s nature, conversations with those very close to me, thinking about and reading the words of people like Dr. Martin Luther King Jr., Nelson Mandela, Father Mychal Judge, Gandhi, Shirley Chisholm, Soujourner Truth, Frederick Douglass, Lincoln, Teddy Roosevelt and others of similar ilk. And then, of course, the people whose rights you are fighting, in my case primarily individuals with brain injuries. My life is all better and then some for knowing as many as I do. As remarkable and resilient and courageous a group of human beings as one can imagine. And then, lastly, for me, reading books!

No matter what you do to keep your spirits up, there will be times you’ll want to give up. There will be times the fear and heartbreak will be so bad you’ll want to curl up into a ball and vanish into the earth. Please don’t give up. For if you give up, you hand those who deny equality a victory because giving up means you’ve surrendered your humanity.

While I will not get into specifics at the moment, I am beginning to realize I may need to  bring certain things into the open that may bruise people I like and, perhaps, in some instances, end friendships or acquaintances. Then again, perhaps some of these individuals will look into their hearts and discover that they too will put equal rights ahead of their honest, but perhaps misguided allegiance, to governmental or private agencies as well as for-profit and non-profit companies.

We’ll see. Being an advocate can be an unsettling, upsetting, heartbreaking, and scary experience. But, the experience of remaining silent in the face of people be denied their rights would be immeasurably worse.

Now, if you’ll permit me, I’m going to go read. I wish you the best.

NYS DOH Evasiveness, the BI Council & Unpaid Providers–Part II

NYS Department of Health numbers released at last week’s meeting of the TBISCC (Traumatic Brain Injury Services Coordinating Council) reveal that TBI Waiver providers across the state may not be getting paid for nearly 11 percent of those individuals on the waiver. The DOH figures for March reveal that while there were 2,839 people were on the waiver, only 2,527 were billed for and 312, or 10.98 percent to be precise, were not.

In every region in the state it appears waiver providers are doing significantly more work than they are getting paid for, a fact the DOH was and is quick to blame on anyone but the DOH.  Some of the numbers are staggering. In New York City it seems providers are not getting paid for nearly 22 percent of those on the waiver with 374 enrolled and only 293 getting billed for. In Long Island providers were not paid for 14.2 percent of their waiver participants and in the Binghamton/Southern Tier region they were not paid for 12.29 percent.

While TBISCC chair Michael Kaplen pressed DOH officials at the meeting for an explanation of the numbers’ discrepancies, both Kaplen and DOH Official Maribeth Gnozzio speculated that the reasons for the discrepancies in the numbers may the responsibility of anyone but the DOH itself.  Gnozzio was more generous with her finger pointing, placing the reason for the discrepancies at nearly everyone’s feet but the DOH’s. She blamed the counties, delays in billing, lapses in service coordination, and fair hearings. Kaplen, on the other hand, speculated that the reasons may some are on the waiver who don’t need to be and others may not getting waver services. However, Kaplen made it clear the issues was a significant one when he said, “This is a huge number to go unaccounted for.”

Kaplen said, “If you have a discrepancy, and I’m just going to use Syracuse (with) approximately 40 individuals (that providers have not been paid for), it means… it could mean that some of these individuals don’t need services and that’s why there’s no billing and they really should be examined to determine whether or not they need to be on the waiver. It’s also possible being that some of these individuals need services and are not getting services and that’s why there’s no billing taking place. But I think there would be important to look at both of those items.”

This writer can tell you that he cannot remember single instance of a provider refusing to give services to a survivor. Moreover, both Gnozzio and Kaplen failed to mention what may well be the primary reason for the differences in the enrollment and billing numbers. When CMS (Centers for Medicare & Medicaid Services) recently audited the state’s waiver, they made it clear that providers could not bill until the received signed approval in the form of an NOD (Notice of Decision) from the DOH. Sources from around the state make it clear the DOH is often slow off the mark in signing NODs and some, including this writer, think at times this may be by design. Providers are only allowed to back-bill 90 days. So, if the NOD takes four to five months to get signed by the DOH, the providers lose one to two months of revenue they’ve truly earned.

The following are the regional numbers provided in the chart provided to the TBISCC by the DOH:

Syracuse: 321 enrolled, 287 billed for.

Rochester: 492 enrolled, 463 billed for.

NYC: 374 enrolled, 293 billed for.

Lower Hudson Valley: 236 enrolled, 212 billed for.

Long Island: 246 enrolled, 211 billed for.

Capital District: 356 enrolled, 324 billed for.

Buffalo: 273 enrolled, 257 billed for.

Binghamton/Southern Tier: 301 enrolled, 264 billed for.

Adirondack: 240 enrolled, 216 billed for.

 

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

 

NY’s TBISCC Meeting Agenda for April 14th

One of the things that must happen is improved communication across the board. Having said that, here is a copy of the agenda for the Traumatic Brain Injury Services Coordinating Council (TBISCC) meeting this April 14th. The meeting is open to the public.

 

Traumatic Brain Injury Services Coordinating Council

NYS Department of Health

Empire State Plaza, Room 125 (near Concourse entrance to Corning Tower)

Thursday April 14, 2011

10:30 AM – 3:30 PM

AGENDA

 

10:30am – 10:45am Welcome, Introduction of New Members,

Review and Approval of Minutes from the December 6, 2010 Council Meeting

10:45am – 11:15pm DOH senior staff attendance to discuss the following to the extent possible:

· executive budget – possible implications for TBI

· identification of new administration/staff

· report back on service coordinator involvement in fair hearing process

· update on the status of the universal screening tool/its potential to replace the PRI for appropriate access to TBI waiver services

11:15pm – 12:00pm Presentation: Analysis of the TBI service provider surveys with follow-up questions and TBISCC member discussion/input.

12:00pm – 12:45pm Lunch (members on their own)

12:45pm – 1:15pm Subcommittee reports –

· Healthcare Reform/Non-Waiver Service Needs

· Public Awareness/ Injury Prevention and Information Dissemination

1:15pm –1:45pm Veteran’s Activities and Service Update (to be confirmed)

1:45pm – 2:00pm TBI Waiver Update

2:00pm – 2:30pm Carry Over Issues from Last Meeting

2:30pm – 3:15pm Public Comment/Summary/Next Steps/Adjournment

3:15pm – 3:30pm Meeting Wrap-Up/Date for next meeting

 

Actions Speak Louder than… (you know the rest)

Last year I had a face to face meeting with three officials from the New York State Department of Health: Mark Kissinger, deputy commissioner, Mary Ann Anglin, Division Director, and Carla Williams,  a deputy director and tough-guy wannabe.

Our conversation at the time, one the three officials insisted not be recorded, probably because Williams knew she was going to launch into what can best be described as laughable attempt to be intimidating, revolved around the state’s decision to sign a contract that would allow Timothy J. Feeney back into the state’s TBI waiver knowing full well he misrepresents his credentials. The contract was signed with STIC (Southern Tier Independence Center) in Binghamton. “STIC’s the one that’s on the hook” said Williams, mustering up a dramatically poor imitation of a snarling delivery. “If they don’t live up to the contract it’s on them.”

I left the meeting thinking there may have been at least some sincerity in their claim that survivors would be treated well and with respect and my oh my how all three said they cared so much. I was wrong, though, even now, I think Anglin might. I say I was wrong because Feeney while operating under the contract and being paid by your tax dollars continues to misrepresent his credentials and even though a complaint was filed with the DOH, they have not responded.  Why? They simply don’t care.

Don’t believe me? Ask them. Write to Kissinger at mlk15@health.state.ny.us or Anglin at Maa05@health.state.ny.us or Williams at Crw03@health.state.ny.us

If you want some real fun, write to the DOH’s Beth Gnozzio who issued a directive in a phone conference that TBI Waiver staff are not allowed to appear in support of their clients in Medicaid Fair Hearings. As her why she and the DOH refuse to put this directive in writing? Gnozzio can be reached at mjg07@health.state.ny.us

And copy me if you’d like. peterkahrmann@gmail.com