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

As discussed in the preceding blog post, this is Part 1 of what will ultimately be a four-part proposal for the New York State’s Traumatic Brain Injury Medicaid Waiver. The first three parts of this proposal will each be published in two segments. The first segment will outline the problem, the second segment will offer a remedy. The fourth part of the proposal will be a summation, along with some final thoughts. I would urge my readers to please share this proposal with all interested parties. If, in your respective journeys, you hear people say it is too late or too soon or its impossible to do anything or change anything, you might want to remind them that there is no time like the present to improve things and, as for any of this proposal being impossible, perhaps they should pause for a moment to consider what it is like for those who are trying taking part in life again when they can’t walk, talk, think, or remember the way you used to. Nothing that will be proposed here is impossible.

The four parts of this proposal, and with a tip of the hat to the phrase, there are three elephants in the room, are:

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

Part 2) Elephant #2: The 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

I am encouraging readers to understand that what I am setting down here is rooted in two facts: I worked in the field of brain injury for nearly 20 years and I’ve lived with a brain injury that will, this August 24th,  celebrate it’s 28th birthday. Over nearly 30 years I have seen agencies that care and agencies that don’t. I’ve seen department of health officials who care and those who don’t. I’ve seen groups and individuals that advocate with their heart and soul and I’ve seen groups and individuals that say they are advocates and they are not. Moreover, I’ve seen individuals and groups who are so sadly self-absorbed that they will gladly  and boisterously support a proposal, if and only if, they can figure out a way to claim the proposal is theirs. And, if someone sees something in this proposal they like and they want to claim it is their idea, that’s fine by me. I don’t care whose idea it is. What I care about, and, what I believe most involved with the TBI Waiver care about (and yes, with some exceptions, I am including  those in the DOH), is that the state’s TBI Waiver, whatever its ultimate form, provides New Yorkers with brain injuries with the kind of services that give them the best chance of reaching their maximum level of independence.


Elephant #1: Lack of knowledge about the brain


Note: You will hear me talk about how those providing waiver services have, over time, developed a level of knowledge about the brain that is far superior to those in managed care companies (and many others). This  should in no way be seen as a contradiction of the assertion that a lack of knowledge about the brain is a rather global problem. Many waiver staff have learned as a result of their individual efforts and as a result of employers who, when able, will take the financial hit that comes with sending a few of their employees to at least some training. The need to increase knowledge of the brain on all fronts, including (and in fairness to) the state’s department of health, is very real.

The good news (and it truly is good news), is this: the majority of companies providing waiver services (we’ll call them waiver providers) are trying with all their might to provide the best services possible, but they are doing so without being able to give their staff the proper training because, in most cases, it is far too costly.  There is no reimbursement for staff training and there needs to be. Those who say it is up to the provider to do this on their dime are just plain wrong. It is simply too expensive. Moreover, there can be no argument that properly trained staff mean a more effective delivery of services and, as a result, those receiving the services will experience outcomes that will grow their independence and thus reduce their need for services, which, for the bean counters, means Medicaid dollars saved.

The way things stand now if a waiver provider wants to send five staff members at a time for training, they must pay the staff while they’re going through training. The waiver provider may or may not have other staff that can do the work of the staff in training. Yet, in some cases, when it comes to counseling services, this strategy would be therapeutically irresponsible.

Lack of knowledge about the brain can and often does result in waiver participants receiving more services than they really need. Lack of knowledge about the brain also provides the less ethical waiver providers – and they know who they are – with an excuse to engage in community-based warehousing, a trend that would be much harder to hide were staff better trained and providers held to a higher training standard.

Right now the lack of knowledge about the brain is leading decision makers to consider changes in waiver services that would be dangerous for waiver participants and, in some cases, stop some people with brain injuries from ever rejoining the community while causing others, now living in the community, to be placed in nursing homes. This is not an overstatement.

Let me be specific:

HCSS (Home and Community Support Services): HCSS staff provide services that help waiver participants manage life in the community with the minimal support necessary for doing so. Apparently, cutting these services dramatically and or entirely is under consideration, the thought being to replace HCSS staff with PCAs, personal care assistants, who are trained to provide a higher level of  care (hands on when necessary). Hands on care is  not needed by many of the waiver participants now receiving HCSS services. There is a gaping flaw in the reasoning behind what is being considered here that can be directly attributed to a lack of knowledge about the brain.

  • What will happen to waiver participants who require no hands on care but who live with a memory (cognitive) deficit that will stop them from finding their way home if they leave their house?
  • What will happen to the waiver participant who has, let us say, no problem whatsoever writing down his or her shopping list but, when they enter the supermarket, the lights and noise and physical activity will be cognitively overwhelming and, were it not to the presence of an HCSS staff member, the shopping trip would not reach a successful conclusion?
  • What will happen to the waiver participant who, in addition to living with his or her brain injury, lives with PTSD  and, as a result,I s unable to leave their home and go for walks or community excursions without an HCSS staff member?

None of the above scenarios requires hands on care, i.e., someone with a PCA level of training. To remove HCSS from the mix would be dangerous and would signal a worsening of services. It would also result in the end of independence for many and the end of a chance at independence for many others.


CIC (Community Integration Counseling): CIC is a form of psychotherapy designed to help a waiver participant manage the experience of living life with a brain injury.

  • Any cuts or caps currently being considered to this service are dangerous and, again, very likely a result of the lack of  knowledge decision makers have of the brain. First, the idea of removing CIC as a waiver offering and handing it over to a managed care company is essentially throwing the baby out with the bath water. There are CICs across the state who over time have developed a really admirable knowledge and understanding of people who live with brain damage, to remove them from the mix is a step backwards. There is little enough knowledge of brain injury in the first place, don’t remove or displace those that have the knowledge that is so desperately needed. The shortage of those who understand the brain is severe enough, there is no healthy reason to make it worse.
  • The idea of limiting CIC, requiring that it end at some point, is another example, albeit an understandable one, of decision makers not understanding the brain. The following point is critically important for everyone to understand, to fully grasp. A brain injury is not, I repeat, not a fixed thing. It is not static. For the person with a brain injury it is one experience when they are rested, often another experience when they are tired. The role a brain injury plays in one’s life changes over time. From 1995 to about 2004 I was able to work full-time hours and then some. On or about 2004, that changed. Fatigue became a factor, and, for the first time, a marked sensitivity to noise emerged. I had arrived at a place where I could maybe work 10 or 12 hours a week at most. Dealing with change like this is a formidable emotional ride, which is why CICs are so deeply important, and why no one but the CIC and the waiver participant should be deciding when or if the therapy should end.
  • The idea of ridding the waiver of CICs altogether is, like that of slashing or ending HCSS, or, for that matter, Service Coordination (Case Managers), a bad one. It will be discarding a slew of people across the state who have a far better understanding of the challenges faced by those living with brain damage than any of their perspective counterparts in  managed care companies.

Service Coordination (Case Managers): Service Coordinators, the waivers term for case managers, work with a waiver participants to help them identify and utilize the services that would best support their quest for independence. Like other waiver service providers, CICs, the Behaviorists, and so on, these Service Coordinators have, over time, developed a working knowledge of the brain that is far superior to any of the case managers in managed care companies who, by the way, are burdened with case loads that are, in brief, largely inhumane. Once again, these Service Coordinators are a valuable resource, to discard them would be, in short, a disaster.

Regional Resource Development Centers (RRDCs): RRDCs are agencies under contract with the state’s DOH to oversee waiver providers and participants in specific regions throughout the state. Some RRDCs are superb (Southern Tier Independence Center out of Binghamton and the Southern Adirondack Independent Living Center out of Queensbury, to name two), some are not. To remove the RRDCs from the picture and hand their work over to managed care companies would  be a disaster. The good RRDCs have a working knowledge of the brain and the waiver itself that far exceeds anything a managed care company can bring to the table; it is not even close.

In other words, to sum up this portion of the proposal, decision makers must be careful not to discard those that have, through hard work and experience, accrued a real knowledge of brain injuries and those that live with them. The notion that informed waiver service providers are  important resources applies to all the waiver services, not just those mentioned here.


Moving on.

Imagine, if you will, two scenarios that quite a few waiver participants have experienced.

Scenario #1: You’ve had a stroke or been in a car accident and your head hit the windshield. As a result, you find that you still think as clearly as ever but every time you try to talk you have trouble putting the words together.

Scenario #2: As a result of a stroke or car accident, you find that you have the same desire you always did to keep your house clean or go for long walks or go to the gym, but you just can’t get yourself to do or finish any of these things.

Scenario #1 describes someone who is dealing with what’s called expressive aphasia. There is likely due to damage to an area on the left side of the brain’s front lobe called the Broca’s Area. It is there that the brain provides you with the ability to accurately say what you want to say. When it is damaged, the person is thinking as well as they ever did but their ability to say what they want to say is damaged. Scenario #2 describes a symptom attributed to frontal lobe damage wherein the person is telling the truth when they say they want to cook a meal or go for a walk and go to the gym, but the internal ignition, as it were, is not there, or, the “fuel” needed to complete the task is not there. It’s as if you were sitting in the driver’s seat of a car your loved but the car had no ignition, or no fuel, or, was absent both.


Structured Day Programs (SDPs): If there is any waiver service that finds itself in the arena of being overprescribed, it is structured day. When well run, and they often are,  these programs are critically important and very helpful. I’ve seen the structured day program offered by RES, a waiver provider in Long Island, and it is, in a word, spectacular. Living Resources in Albany is excellent. The same can be said of the structured day program that was offered at the Cortland Community Re-Entry Program under the remarkable leadership of Joseph Abdulla. Sadly, Healthcare Associates, Inc., parent company to the Cortland program, dropped the ball, and the Cortland program is no more.

Having said this, some SDPs are prime examples of community-based warehousing and a blatant disregard for the rights of the participants and the realities of their injuries.

Let me first explain a reality faced by everyone who lives with brain damage. Simply put, part of your brain doesn’t work anymore which means the rest of your brain must pick up the slack. It has to work harder, in other words. A good analogy would be, you have a car with a six-cylinder engine. One of the cylinders stops working. The engine still runs, but it is now five cylinders are being asked to do the work of six. The fact that the injured brain is working harder is one of the primary reasons fatigue is a factor for many of us. Moreover, the brain itself has no nerve endings so, unlike your arms and legs who, bless them, will let you know when they’re tired, the brain won’t. You have to learn to read the signals as it were.

Some of the less ethical waiver providers don’t want their staff to learn more about the brain because they don’t want to reduce any services for anyone. As the wife of a man with a brain injury once told me, “The second my husband got his brain injury he became a cottage industry.” I remember becoming a CBIST (Certified Brain Injury Specialist Trainer) which meant I had the expertise to train others to CBIS (Certified Brain Injury Specialist) levels of expertise. The Albany-based provider I was working for at the time never once utilized my skills on this front and even scoffed at the CBIS training manual as being useless, never mind that the manual was thanks to the input of a wide range of neurologists, neuropsychologists, and so forth.

A frequent pattern in SDPs run by the less ethical waiver providers is as follows. Waiver participants are often expected to attend the SDP Monday through Friday and stay for the full five hours the waiver provider is legally allowed to bill for. Whether they attend five days a week or not, they and their clinicians are told that they cannot leave structured day to meet with a clinician. They can meet with the clinician during their (the participant’s) lunch hour, or at home in the evening. Why is this? The waiver provider doesn’t want to lose a single solitary hour of billing for structured day. Never mind that the participant will be exhausted in the evening, it doesn’t matter. I know of cases where participants arrive home, exhausted after a full day of structured day, only to have one to three hours of clinical time at home. And, if the participant finally says enough, stop, the provider will drag them in front of the RRDC claiming the participant is refusing the care they agreed to. Now imagine trying to defend yourself if, as described above, you had expressive aphasia.

These are some and by no means all of the challenges now being faced by New York State.


Please distribute to all interested parties


Next: Lack of knowledge about the brain – a remedy



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