NY State needs and deserves its TBI Waiver

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.


A Renegade NYS Agency

There are, as you might guess,  state and private agencies who put great effort  into convincing the public at large that they truly care about the people they serve and are working very very hard to meet their needs. Peel back a  few layers of public-relations spin and you will oftentimes find nothing could be further than the truth. Too often the motive is to look rather than do good, and raise a little money while you’re at it.

A few people I work closely with are beginning to look deeper into the activities of a non-profit agency. As those of you who read this blog already know, the NYS Department of Health is a problem in nearly every sense of the word when it comes to the lives of brain injury survivors in the state. However, in fairness to the DOH, it does not fall into the category of an agency who tries to look good. It makes little to look good at all because it is hard to determine who is actually holding them accountable. They are an arrogant renegade state agency if their ever was one. The way they treated the TBISCC (Traumatic Brain Injury Services Coordinating Council) earlier this month reeks of arrogance.

The TBISCC, to its credit, has asked the DOH to speak on the problems with Medicaid Fair Hearings being faced by brain injury survivors on the state’s TBIU Waiver because the DOH last year gave a verbal directive blocking their case managers from advocating for them at the hearings. The day before the TBISCC’s meeting on April 14, the DOH notified TBISCC Chair Michael Kaplen that no one would be available to discuss the matter.

Now, this writer and others wrote to the DOH’s  Cheryl Veith asking her to put us on a several years old email-list that tells the public when the TBISCC is having its public meetings and sends out agendas and minutes when they become available. Apparently the DOH has decided the mailing list was too friendly. Ms. Veith responded with “We have recently implemented a process whereby announcement of scheduled TBICC meetings, minutes of the last meeting, and a draft agenda for the next scheduled meeting will be posted for the public to view on the Department of Health website at: www.nyhealth.gov/events/meetings/index.htm.”

Some who live with brain injuries live with memory deficits, processing challenges, and more. Wading through a website can be tantamount to climbing Mt. Everest without oxygen.  This fact has been shared with Ms. Veith and other DOH officials like Deputy Commissioner Mark Kissinger, Mary Ann Anglin, Lydia Kosinski and Carla Williams, all of whom will do their level best to convince anyone who crosses their path that they really really really care about brain injury survivors. So far, a large number of survivors and their families and healthcare professionals who work hard to help us think that’s bunk.

Reinstating the email list is, to use a phrase right out of the ADA, a reasonable accommodation for those of us who live with brain injuries. I doubt they will reinstate it   because for some time now there are two words no one links to the NYS DOH: reasonable and accommodating.

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.


Now Is Not The Time

It is safe to say I am not the poster boy for patience these days. Things I’d normally let roll off my shoulders are being snapped at.

There are a few stressors at the moment. I have to leave where I am living as a member of my landlord’s family needs the home. My landlords have, for these past nine years, proved themselves to be the greatest landlords in the world.  I am also on disability with a sprinkling of money here and there for writing along with the occasional speech; there is a reason there is no fancy car in the driveway. Truth is I wouldn’t want one anyway no matter the state of my revenue.

Thinking I was moving to Herkimer County New York we switched my NY TBI Waiver benefits there and now, given that the deal for the house we’d hope to buy looks to be dead in the water, I find myself without rent or utility subsidies and despite the fact I may be moving to a place close to my current home, I am dealing with a state Department of Health that will likely make it impossible to regains the subsidies. Those of us on the TBI Waiver are having their services sliced and diced and, in too many cases, entirely denied  by a DOH that essentially creates regulations on the fly and doesn’t even follow what few regulations they have set forth in the manual they wrote.

Moreover, because of the presumed move to another county, there are, for this month, no food stamps. So, a for man who has  been homeless before, hospitalized twice for hunger pains, the pressure is on. While intellectually I know I will not wind up homelessness, I think it fair and accurate to say that once you have experienced real homelessness in your life, its specter is always near. Along with this, my body, normally an ally, has paid the price. Nights are fairly packed with back spasms which strike sporadically throughout the day as well.

This too shall pass, as they say and I know that. I have been reading some good books, having, I am ashamed to say, started reading John Dos Passos for the first time this year (a staggeringly brave and brilliant writer).

Having said all this, now is not a good time for someone to give me any grief. Some years ago someone I was working with said, “You’re a tough guy you know.” I was mortified! To me tough guy meant bully and not only have I never been a bully I have always been the one who has looked to take on the bully. I took my mortification to my friend and sister in my heart, Judy.

“You got a minute?” I asked.

“Sure,” she said, sitting down, smiling.

“Am I a tough guy?”

“Tough guy?”

“Yeah. Tough guy. Like in bully.”

“You’re not a bully, no. But you are a tough guy.”

“What do you mean?” More mortification.

“You don’t take any shit from people.”

Now that I could live with. And it’s true, I don’t take any shit.

Especially now.

A Dangerous Combination

What is becoming increasingly clear is the absence of regulations, the absence of clear cut policies and procedures, leadsto chaos and chaos leads to suffering. I am talking here about New York State’s Traumatic Brain Injury Waiver which is overseen by the state’s department of health. While recent posts have detailed the kind of callous treatment I’ve been enduring at the hands of the state’s DOH, I am not alone. Many are going through the same kind of experience throughout the state.

To date there are more than 50,000 readers of this blog and from time to time some of them take me to task, sometimes harshly. But, to their credit, their opinions are driven by the search for truth, a justifiable desire to hold me accountable, and, at times, a straight-up  difference of opinion. In other words, they hold my feet to the fire and sometimes when they take me to task, they are right. I’d be a fool to be anything but grateful to them, and I am. Very.

What is markedly absence from my readers when they take me to task is lip service. They say what they mean and mean what they say. The substance of their honesty is refreshing. They are a lesson in the absence of lip service, a lesson that ought to be learned by some in the department of health and even some in the advocacy community who say all the right things but do nothing. After all, we are talking about people’s lives, the quality of their lives and, in some cases, their ability to keep their lives.

A Dangerous Combination

The absence of regulations coupled with a penchant for lip service is a dangerous combination.

Some weeks ago I met with three DOH officials: Deputy Commissioner Mark Kissinger, Director of  Division of Home & Community Based Care Services Mary Ann Anglin,  and Deputy Director of the Office of Long Term Care Carla Williams. Truth be told, I genuinely like all three of them. Mr. Kissinger certainly seems to be a good and decent man whose heart is in the right place. Ms. Williams is an extremely sharp refreshingly no-nonsense individual and Ms. Anglin is an extraordinary thinker and communicator.

There are, however, two things (among others) that an advocate has to be careful about. One, as an advocate you can’t allow the fact you dislike someone or that someone dislikes you to drive your decisions. Conversely, you can’t allow the fact you like someone or that someone likes you to stop you from holding them accountable. Advocacy is not pain-free.

During this meeting Carla Williams said the state’s TBI Waiver is the best of its kind in the country. Well, a couple of things. Certainly having a waiver is far better than not having a waiver. No argument there. But, if New York’s waiver is the best in the country, that doesn’t say much for the waivers in other states, because New York’s waiver, which is absent any clear regulations, is, sadly, a minefield of dysfunction.

The Providers Alliance, a group of about 40 companies that provide waiver services has clearly documented that no clear-cut billing policy for waiver providers around the state exist and this has proven highly problematic and costly, both for the providers and survivors.

There have been instances, for example, when a doctor will issue a written order directing that a survivor needs staff to be with him or her throughout the day. The provider is compelled to, wants to and does provide the staff right away. The problem is there are times the DOH has not signed off on the service and may not do so for weeks, which means the provider may not get reimbursed for the service they’re providing.

To its absolute credit, the Providers Alliance has provided the DOH with a carefully thought-out series of recommendations to improve the unwieldy TBI Waiver manual (I’ve seen their work, it is superb), yet there has been no real response to their efforts. Curiously, the TBI Waiver manual lists six indexes, none of which are present in the manual!

Moreover, the DOH is informing quite a few survivors of brain injury around the state that there services will be cut and, in some cases, discontinued all together. The problem here is these decisions are being made by people who have utterly no understanding of brain injury, much less any real working knowledge of the human brain.


Actions Speak Louder than Words

Once when I was a boy I complained to my father about the fact some phrase was a cliché. My father, the greatest gift life has ever given me by the way, smiled and said, “Well, Pete, there’s a reason they become clichés.”  He was right.

Which brings me to the cliché, actions speak louder than words.

So, let’s compare Words versus Actions:

Words: The TBI Waiver manual provides a list of participants rights on Page 6, one of which reads says participants must “Be treated as an individual with consideration and respect”.

Actions: Waiver participants, including this writer, are having their services cut, reduced or delayed by the DOH without warning and, in my case and certainly others, without explanation. Moreover, requests for explanations are largely ignored. Consideration and respect?

Words: Participants must  “Be treated as an individual with consideration and respect”.

Actions: Capitol Region RRDS Natalie Marabello implies this writer is feigning the need for a life alert and white noise machines and further implies that he is wasting her time. Result? Ms. Marabello is promoted to Lead RRDS. Consideration and respect?

Words: DOH officials insist they will decide whether to approve requests for things like life alerts and white noise machines along with other forms of assistive technology and, in some cases, mediations, on the merits, and, in this effort ask for documentation from doctors supporting the request.

Actions: This writer and others across the state have requests in from assistive technology with the required letters from both a doctor and psychotherapist, the RRDC has signed off on the request and the DOH still does not sign off on it. What form of measurements, specifically, does the DOH use to determine the merits?

Words: One section of the participants rights in the TBI Waiver manual reads, “Have your complaints responded to and be informed of the resolution.”

Actions: The waiver complaint line protocol between the Brain Injury Association of NY State and the DOH not only fails to set forth any time lines within which a complainant must get a response, it fails to mandate that a complainant get a response at all.

The point is, all parties need to get together to resolve this, the DOH it seems has a penchant for behaving in a rather insular fashion, and this serves no one’s interest, unless of course we are talking about  Social Darwinism and all that drives the DOH is a desire to be the big kid on the block.

My hope is that all will come together and resolve all this, because in the mean time, survivors, families, and providers are suffering.