We Are Not Children, We Are Not Slaves: Living With a Brain Injury – Part II

It would be understandable but inaccurate to blame the New York State Department of Health for the existence of problematic companies that provide services under the state’s Traumatic Brain Injury Waiver. The DOH does not have unlimited resources in staff or funding.  Over the years I’ve had largely positive experiences with the DOH. There are people there who care deeply about those who live with brain injuries. I do not for a second envy the unwieldy and baffling bureaucracy they are asked to negotiate daily.

Historically, the waiver is new. It only came about here in 1995 and 14 years in existence does not a perfect program make. I think all would agree the waiver is a work in progress and so it should be, always. I think the DOH understands this and I applaud them for their efforts. Yes, there are issues and problems, but is this not the case with all new things?

One of the tools the DOH does not have – but deserves – is enough people to thoroughly survey and expect the companies that provide waiver services. Again, this is not because the DOH does not want to keep track of things. Budget realities and  skewed priorities (not of the DOH waiver staff’s making) get in the way. Moreover, the reimbursement rates the companies are paid for providing waivers services are so low they would be laughable were the results not so tragic. And the tragedy  on this front is at least twofold. Because of the low reimbursement rates these companies are hard pressed to stay afloat (some do not), and those of us who live with brain injury are saddled with so many hours of programming every week  fatigue takes over and puts us at risk in a very real way.

Consider this for a moment. When the brain is damaged, no matter the cause, there is now less brain doing the work. It’s as if you had a car with a six-cylinder engine and one of the cylinders blows out leaving the engine operating on five cylinders. The car still runs, but the engine is working harder. And so it is with brain injury. We still function but our brains are working harder, so fatigue is a major, major problem. When some of these companies pile on the hours of programming, the toll it takes on those of us with injuries is brutal.

Some companies load up on programming hours because they honestly,  but mistakenly, feel it is effective, others load up on  programming hours because they are all about making money and only see those of us with brain injuries as a way of doing just that. The hell with the damage it does. There’s plenty of us to go around. Keep in mind,  something like 1.5 million Americans suffer a brain injury every year.

– to be continued

We Are Not Children, We Are Not Slaves: Living With a Brain Injury- Part I

Discrimination denies people what they deserve – their freedom.

I have lived with a brain injury for nearly 20 years and have worked in the field for nearly 15 of those years. Raised in a civil rights family I am very much an advocate for every individual’s right to be who they are, in safety, with equality, in the world they live in. When I talk with survivors of brain injuries in this state and others, the number one complaint I hear is They treat us like we are children. Tragically this is true.

My injury was sustained when I was held-up and shot in the head at point blank range in 1984.

The dehumanization of people with brain injuries (of people with disabilities) is epidemic in scope. In too many instances those who live with brain injuries are treated by health care providers as chattel. Living things used to make money for the greedy. No matter how you hold this truth up to the light, it is a form of slavery: emotional, spiritual and physical slavery.

My state, New York State, offers what in common parlance here is referred to as the Medicaid Waiver. The waiver is a form of Medicaid reimbursement for healthcare providers who offer services to people with brain injuries who live in the community. While the lives of many brain injury survivors has improved as a result, the lives of many on the waiver have been turned into a form of community-based incarceration.

This is not a situation that calls for broad brush strokes. There are waiver providers in this state who, in my view, do an extraordinary job. The Cortland Community Re-Entry Program in Cortland and Living Resources in Albany are two superb providers. Others, like the Albany-based Belvedere Brain Injury Program is not even close to its website’s claim that it is “the Capital District’s leading traumatic brain injury community rehabilitation program”. An arrogant and unfounded claim if ever there was one.

to be cont’d


An Interview with brain injury survivor Peter S. Kahrmann regarding his plans to write a book about what it like to work in the field of brain injury for more than 13 years.

– Why now?
– Several reasons. I’ve been in this field for a while and have, I think, seen the best and the worst of it. Last year I learned I had a heart condition, which in itself might not end my life, but it certainly reminds me that none of us is here forever, and because I think the world of working with people who live with brain injuries is particularly vulnerable.
– In what way?
– Well, from a historical perspective, it’s a fairly new field, especially working with people with brain injuries, with disabilities who live in the community.
– That sounds as if there are some great opportunities.
– Absolutely true. And if people come into the field or are in the field to truly help survivors gain their maximum level of independence, it is a beautiful thing. And I know quite a few people, I mean really good people, who are in this field, this arena for honorable reasons.
– And, of course, there are others.
– You’ve got people in this field who are in it for nothing but the money. You’ve got others who are in it because they want the world to think they are these great and wonderful benefactors when they are anything but. You’ve got some who could give a rat’s ass about survivors and their families because they are just a means to an end.
– How so?
– Okay, let’s say I come up with a new medication that if it sells will make me a ton of money. Being seen as some cutting edge person and making the ton of money is what I really care about; all I want the survivors to do is take the med.
– Does that happen?
– I think it probably does, but what I’ve seen is something analogous to that.
– For example?
– I’ve seen some who think they and they alone have the answers and know better than anyone else who goes about inflicting their will on survivors, providers, and, when folks like these have too much power, especially power in high places, they can be hard to stop.
– You’ve worked in New York.
– Yes.
– New York has a brain injury waiver, the TBI waiver.
– Yes, and if you read it and its design, I think you be hard pressed to find a better one. The whole design of the waiver, which itself is a form of Medicaid reimbursement for providers who work with brain injury survivors in the community who are poor, or who have put there monies in a trust in order to get waiver services, is pretty special. It’s consumer based.
– What’s a consumer?
– Somewhere along the line, the decision was made to call survivors consumers.
– Like a consumer in a free market place.
– I suppose so. I don’t know any survivors who like the term, although I’m sure it’s well intended.
– What would survivors like yourself preferred to be called.
– People.
– …Hard to argue with that.
– That’s not what some would say.
– What do you mean?
– One of the common challenges faced by people with disabilities is dealing with people who treat us as if we are less smart, less valuable, even less human than other folks are. The whole issue at its core is very much a civil rights issue. Blacks, gays, lesbians, Latinos, Asians, the Irish, Italians, have all, at one time or another, been treated as if they were lower class, less than others. There are several poisons in the mix but one of the deadliest is that those who hold the reins to your ability to stay in the community wield a great deal of power. And some are more than willing to say, tow the line, do what you’re told, or out you go.
– That sounds vicious.
– It sounds vicious because it is vicious. Greed, the lust for power, money, are all poisonous in and of themselves. Lincoln once said, “Most men can handle adversity but if you want to test a man” or woman’s “character, give him power.” I’ve seen good people turn rotten and spoil because of it. Some don’t see it, and in their hearts believe they are doing the right thing for others, some see it, know it and are so messianic they don’t care. And then there are the wolves in sheep’s clothing.
– Really?
– Sure. They come across as nice, kind, caring people yet behind the scenes will stab people in the back without blinking an eye.
– Has that happened to you?
– Oh God yes, more than once.
– Is that why you are writing the book?
– No. It will certainly be part of the book, but no. I’m writing the book because I think I can. I want to write it honestly, with integrity, and with the sole purpose of telling the truth about my experience as best I can.
– Aren’t you angry at those that you say have stabbed you –
– And others –
– And others in the back?
– Sure. But it’s part of the journey. I try to teach people to be angry at the behavior, forgive the person. Hate the behavior, not the person. Hate the bigotry, don’t hate the bigot.
– That’s not easy.
– True. But it’s easier than walking around with hatred in your heart.
– Okay, Mr. Kahrmann. We need to pause here. We’ll continue this interview again soon.
– Great, talk with you then. And thank you.
– Thank you.