Too many New York State health care providers who offer community-based services for those of us who live with brain injuries do not focus enough on the role the injuries play in our daily lives.

This neglect happens for a variety of reasons, some understandable, some not. However, the results of this neglect can be devastating for the survivor, their loved ones, and the caregivers themselves.

One can be sure the same problematic dynamic described here runs the risk of hindering services for the veterans returning home with brain injuries, or TBIs as they are more commonly called. TBI stands for Traumatic Brain Injury. I’ve often wondered if there is any other kind.

Before I go on here, let me say that Life Growth, something I teach, calls for the absence of judgment. Therefore, we must be careful not to judge anyone in this essay. While all of us are responsible for our choices, inflicting judgment on what is behind each others choices is, one, a waste of time, and two, often wrong, and three, makes the journey of dealing with the real challenge posed by brain injuries all the more difficult.

I have been in the field of brain injury for more than 13 years now and have lived with a brain injury since 1984 when I was held up and shot in the head. When it comes to getting your brain injured, trust me, that’ll do it.

My state of New York has the Traumatic Brain Injury Waiver, a form of Medicaid reimbursement for services provided to those survivors living in the community who qualify. While it has its imperfections, it is, in its design, an extraordinary start. Since the New York waiver only came into being in 1995, which historically puts us at the beginning of this journey, it is a terrific start.

One of the flaws though, which those in the New York State Department of Health would acknowledge (and it is not their fault at all), is the waiver does not cover all brain injury survivors in the state, only those who qualify for Medicaid and meet some additional criteria.

Before I get to the healthcare providers, I do want to offer a suggestion to New York’s DOH. Add a mandatory provision in the waiver that requires providers to draft a discharge plan with the survivor’s input as soon as they come onto the waiver.

There can be no doubt that the waiver already seeks to support survivors in the community with the least amount of services necessary; so the mindset of the waiver from jump street is to encourage independence. However, were discharge plans mandated from the beginning, the provider and the survivor would be consistently working towards complete independence from services, which will be possible for some and won’t be possible for others. However, it sets an appropriate tone.

Back to the healthcare providers who are, for the most part, a rather gallant lot. Working with survivors of brain injury living in the community is a new endeavor and so there will be honest mistakes. Nevertheless, we are wise to use all the information at hand in our work and here is where some providers fall tragically short.

The neuropsychological assessments for many survivors across the state often sit on shelves and accumulate dust from lack of use. Not using a survivor’s neuropsychological assessment when working a survivor is like trying to deal with broken bones without using x-rays.

Neuropsychological assessments can provide a real window into the daily realities and challenges faced by the survivors. They can help mightily in identifying the specific areas where the brain is injured and, as a result, provide a better understanding of any deficits in the cognitive realities the survivor copes. As a result, neuropsychs can play a key role in helping determine the most effective course of treatment.

Neuropsychs can also help track changes the injury is causing over time, both positive and negative. Yet too many providers leave them sitting on the shelves or, in instances were the survivors do not have neuropsychs, make little if any effort to get them one.

Last couple of thoughts for this essay (there will be more essays on this topic). Over the years of working with survivors there are some common themes that are, unless addressed, truly problematic and, for those of us who are survivors, annoying, to put it mildly. I’ll deal with one in this essay. Fatigue.

Too often providers treat fatigue in survivors as if it is something we should just snap out of it. Go splash some water on your face or drink a cup of coffee: two truly bad ideas. First, the water won’t do anything other than make our faces wet and the coffee is risky business. When someone drinks a caffeine drink and feels a burst of renewed energy, watch out, it’s a lie. All the caffeine does is turn off the “voice” in your brain that is telling you that you are tired. In short, the caffeine gets your brain to lie to you.

When you live with a brain injury, your brain is working harder than a non-injured brain. You used to have an eight-cylinder engine in your car; one of the cylinders blows out, now you have seven cylinders. True, the car still runs, but the engine is working harder. And so it is with brain injury. When we are tired, we are tired. We are not faking it.

In this instance, we are not the ones who need to wake up.


  1. Amen, brother…on every point you have made in this essay. Those who need to listen, need to LISTEN to you, and to others who know of what they speak!! So keep on writing your book…no matter how long it takes, or how many times it changes form. Nobody has ever written ‘THE’ book on brain injury…nor will yours be ‘THE’ book Peter (well,it may be!?) Yet, for what you speak of with the knowledge of one who has survived, rehab and all, who has lived with brain injury all these years, who has learned from many sources and taught himself about the brain, and teaches others… you WILL be read, you WILL be sought out. You must always require of others acknowledgement of the fatigue that is ever present, and the need to be allowed time when you are apprehensive of leaving the shelter of your home. But you will do it…and those of us who truly do care Peter, will be right by your side. As gently as you admonish for people to realize that it is not the brain injury survivor that needs to ‘wake-up’ ~ I sit in conference, in meeting, in team, in review and on and on, where people deem themselves capable of making decisions about other peoples lives…they hold hostage, and imprison in so many ways. I listen and I am just screaming inside for them to “WAKE-UP”. Yet my nature is to just say it, loud and clear…and yet it is me who is told that I don’t “get it”. Frankly, I don’t ~ whatever it is they want me to get, I don’t want to get it. This is what plagues me;i have much to learn. ~D

  2. Fatigue– ah yes I know her well.I am one of the survivors ignored by the waiver and I am currently helping another survivor who is also not eligible for the waiver. The bottom line was that I had to be in charge of my own rehab. One of the unhigh points of dealing with people who don’t totally get it was when I was informed by a medical doctor that I won’t get disability. “You drive! And you do housework!” he told me.If he had seen my house, he never would have made that claim.spike


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