A proposal for NY State’s TBI Waiver: Elephant #1: Lack of knowledge about the brain: a Remedy

We have thus far identified the four parts of this proposal. In short they are the three elephants in the room and a summation with final thoughts.

Part 1:  Elephant #1: Lack of knowledge about the brain

Part 2:  New York State Traumatic Brain Injury Services Coordinating Council

Part 3: Elephant #3: Lack of effective oversight of those providing services to those on the waiver, a problem which is severely exacerbated by Elephant #1

Part 4: Summation and final thoughts

The proposal format for Elephant #1 is being published in two parts. The first part, the outlining of the problem or challenge, was published yesterday, and this is the second part, a proposed remedy to the issues outlined in part 1. I had thought elephants #2 and #3 would need to be addressed in two parts, but they may be able to be successfully addressed in one part. We’ll see.

Let me say that not for a minute do I think the remedy, as set forth here, is in any way perfect nor am I claiming that it can’t be improved on. It can, and it should be. What I believe is that the remedy I am about to describe here is a solid step in the right direction and, if it is applied, it will, in addition to dramatically benefitting the lives of those men and women with brain injuries currently on New Yorks TBI (Traumatic Brain Injury) Waiver and the lives of future waiver participants, save Medicaid dollars, a lot of them, to put it mildly.

Thus far I have, I hope, successfully outlined some salient points. First, as the current waiver molds into its new form, decision makers must be very careful not to discard the plethora of waiver staff and others (RRDCs) who have, over time, developed an understanding of the brain and brain injury that is rare in general and rare in the over-worked folds of managed care companies. Second, anyone providing and or monitoring/regulating waiver services must be trained and deserves to be trained to a level of expertise that is currently sorely lacking. Third, there can be no doubt that truly well-trained waiver staff, RRDCs and DOH staff, will create a program and delivery of services that will result far more positive outcomes and save money to boot. Brain Injury 101, which is offered by the Brain Injury Association of New York State (BIANYS) free of charge, is excellent for those seeking a cursory overview of the brain, but it does not provide the level of knowledge needed and deserved by those providing waiver services nor those overseeing and regulating them.

However, BIANYS has staff qualified to train individuals to become a CBIS (Certified Brain Injury Specialist) or a CBIST (Certified Brain Injury Specialist Trainer). The CBIST is qualified to train people to the CBIS level of expertise. Both CBIS and CBIST are offerings linked to ACBIS, the Academy of Certified Brain Injury Specialists.

Now, I am anything but oblivious to the fact that Medicaid dollars, any dollars for that matter, are in short supply. There is a fee for each person sent for CBIS or CBIST training, something in the neighborhood of $300 per individual. Even if a reimbursement rate for staff training is instituted, and it must be if this program is ever to reach its full potential and save money in the process, $300 per individual is far too costly for providers. So, here is what I propose.

  • Identify some key staff members who meet the criteria for becoming CBISTs as set forth by ACBIS, and send them for the training.
  • Once they are CBISTs, they are then able to train staff to a CBIS level of expertise. No, ACBIS will not be issuing certificates because no fees were paid, but yes, staff will be at a significantly higher level of expertise and, to my knowledge, there is nothing preventing providers or the RRDCs or the DOH from issuing certificates of achievement to those staff members who have reached the CBIS level of expertise.

Were this proposal to be enacted, waiver programs would operate at a markedly higher level of expertise, waiver participants would benefit greatly, and, in the long run, would require less services to maintain and increase their independence, which is, after all, the point of the waiver in the first place.

Now, I think at some point the DOH must make this level of training mandatory, but not until one of two things happen. There is either a reimbursement rate instituted for staff training that, I have neglected to say until now, must be relevant to those who live with brain injuries, or, there is a higher reimbursement rate awarded for waiver services once the training is successfully completed.


Please distribute to all interested parties


Next: Elephant #2: New York State Traumatic Brain Injury Services Coordinating Council

Willing to fall down

A brain injury is not a static being. One’s relationship with the damage changes overtime. I am no exception. It is also hard at times to determine how much is the injury and how much is rooted in one’s emotional configuration.

There was a time after the injury in which I could work 50 to 60 hours a week. That ended some years back as fatigue is an issue now. Keep in mind that a damaged brain is physically working harder than a non-damaged brain. It’s as if a six-cylinder engine is now running on five cylinders. It still runs, but it has to work harder to run.

I also deal with PTSD. So do many others with brain injury. PTSD (Post Traumatic Stress Disorder) is essentially a disorder that results from a trauma out of the norm. In my case it was being held up and shot in the head. I imagine the combination of living on the streets, being held under gunpoint for several hours before escaping, and being held up at gunpoint only months after the shooting also contributed to the presence of the PTSD.  The damage in my frontal lobe as a result of the bullet does not help. Of late, my isolating has spiked. It is rare I leave the house. I’ll put off shopping or going to the library until the last minute.

I do manage to get to the support groups I facilitate for people with brain injuries and I do manage to get to leadership team meetings for the Kahrmann Advocacy Coalition. I also get to meetings of New York State’s Traumatic Brain Injury Services Coordinating Council. I suppose I am able to break out of seclusion for the aforementioned reasons because lives are at stake, people’s equal rights are at stake, and spending time with fellow survivors of brain injury means a great deal to me.

I can tell you that the day-in day-out struggle with the PTSD-isolation is exhausting and upsetting. Those who know this terrain like I do, and there are many who do, will understand when I say it is not a matter of not wanting to go out. I do. It is a matter of breaking through what I call the fear wall. Today I succeeded in returning a book to the library. It was beautiful weather and my plan was to park and walk about the town. I couldn’t do it. I drove about the town for a short time and managed to stop at the market for a bit of food. There was a moment in the market when I was frozen still with terror. Part of me wanted to drop my shopping basket and run for the exit. Instead I finished my task and hustled back home.

Once home I realize that in that terror moment I was worried that the internal trembling would become so pronounced and debilitating that I would fall down. It then dawned on me that I need to be willing to fall down, push the edge of the terror envelope in other words and if it makes me fall down, so be it.

I will not give up, of that you can be sure. Why do I write a piece like this? In part I write it because there are many who face the same things I do and if they read this they’ll be reminded and reassured they’re not alone. And if there is anything I have learned in life it is this; the challenges we face become more manageable when we realize we are not facing them alone.