Tag Archives: brain injury survivors

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

Posted on by
1

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

Posted on by
Reply

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