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

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