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A Kick in the Head for Brain Injured

By Peter S. Kahrmann

Common sense would dictate that if you or someone you know is a participant in a community-based program for people with brain injuries, you can rest assured that program staff, as well as those overseeing and regulating the program, are highly trained in the brain. But if you live in New York state, common sense would be dead wrong -- catastrophically so.

Not only does Gov. Andrew Cuomo’s New York State Department of Health, the state agency responsible for overseeing and managing the state’s Traumatic Brain Injury Waiver Program, not mandate that waiver providers have any real expertise about the brain, the DOH staff that oversees the waiver, writes the waiver’s manual, and directly influences what services waiver participants do or don’t get, have no training concerning the brain either.

Nor are they required to.

The TBI Waiver is a Medicaid program designed to provide services to individuals with brain injuries so they can remain in or return to the community, often from out-of-state nursing homes.

This writer and others have asked the DOH to explain why it doesn’t require that waiver providers have any real, measurable expertise concerning the brain. For the most part, the DOH has a boilerplate response to that question: silence.

As I said, the result of New York’s negligence is catastrophic, on several fronts.

First, those with brain injury disabilities do not get the quality services they deserve. Second, the less e

thical providers freely engage in community-based warehousing by keeping program participants trapped in day programs for as many weekdays as possible and giving them as many hours of services (such as training in independent living skills) per week as possible. They do all this with no apparent intention of decreasing the amount of services because we survivors of brain injuries are seen as little more than revenue streams.

The wife of a brain injury survivor once told me, “The moment my husband got his brain injury, he became a cottage industry.”

Third, those honorable waiver providers – and they’re out there – who truly want to provide quality services are caught between a rock and a hard place. There is no reimbursement paid to providers for training their staff. So, if a provider wants to get his or her staff fully trained, the economic and treatment loss is severe. Staff have to be paid while training and, unless the provider has enough staff, program participants will miss their services, thus wounding the recovery process for the participant and further draining the provider’s coffers.

Back in 2004, I did a 1,000-mile bicycle ride around my home state of New York in an attempt to increase the public’s awareness of folks like me who live with a brain-injury disability. I got mine when I was held up and shot in the head in 1984. People with brain injuries are only one segment of the more than 55 million Americans, nearly 20 percent of the population, who live with a disability.

During that ride, I met many providers and people with brain injuries. At each stop, I asked the waiver staff in attendance how many of them could name the four lobes of the brain. Only two individuals, each from a different provider, knew the answer.

The wife of a brain injury survivor once told me, “The moment my husband got his brain injury, he became a cottage industry.”

There is, at this point, no end in sight. New York state has a Traumatic Brain Injury Services Coordinating Council, a 19-member body formed by an act of the Legislature in 1994. Its mandate is to offer proposals to the DOH to improve the lives of New Yorkers with brain-injury disabilities. Over the course of 20-plus years, the council has offered something in the neighborhood of two proposals, neither having anything to do with the waiver.

Some council members are health-care providers who rely on the DOH to function. There is a conflict of interest, to say the least. Equally troubling, the DOH has not asked the council for input even once.

It is a sickeningly sad time when individuals with some kind of emotional and or physical malady are restricted to services offered by individuals and providers who are not required to know anything about the maladies themselves.

Shame on New York, and shame on Cuomo. His father, the late governor Mario Cuomo, under whose administration the council was formed, would not be pleased. Sometimes, the apple falls far from the tree

Peter S. Kahrmann is a writer and an advocate for people with disabilities.

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