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 --
Not only does Gov. Andrew Cuomos
New York State Department of Health, the state agency responsible for
overseeing and managing the states 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 waivers manual, and
directly influences what services waiver participants do or dont 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 doesnt 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 Yorks
negligence is catastrophic, on several fronts.
First, those with brain injury
disabilities do not get the quality services they deserve. Second, the less
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
The wife of a brain injury survivor once
told me, The moment my husband got his brain injury, he became a cottage
Third, those honorable waiver providers
and theyre 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 providers
Back in 2004, I did a 1,000-mile bicycle
ride around my home state of New York in an attempt to increase the
publics 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
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
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
Peter S. Kahrmann is a writer and an advocate for
people with disabilities.