Brain Injury Survivors Sue New York State

The Courthouse News Service today reports that “Hundreds of people with traumatic brain injuries may be forced out of their community living facilities and placed in institutions, due to a new provision in the state’s Medicaid program, according to a federal class action.”

The survivors, represented by Robert W. Lukow of Legal Services of Central New York, in Syracuse, say “the state Department of Health is violating the Constitution and the Medicaid Act by abruptly transferring scores of "waiver" participants to different service providers, without adequate notice and without ensuring that services will continue”.  The content of the lawsuit itself is powerful.

This writer has heard from waiver providers and survivors who are reeling from the impact of the DOH directive. Moreover, as one who lives with a brain injury and one who has worked with people with brain injuries for 15 years, I know firsthand how devastating change can be, especially change that has entirely ignored your voice.

One of the through lines of trauma is loss of control. Whether it is a gunshot wound to the head (my experience) or a car accident, death of a loved one, stroke, fall, loss of job or relationship, loss of control is a brutalizing and merciless factor.

New York State has a lot to be proud of by bringing the Home and Community Based Services Medicaid Waiver for brain injury survivors online 1995. However, inflicting directives on those survivors against their will, when it damages their quality of life and more, inflicts yet another trauma by removing all control from the survivors, is nothing at all to be proud of.

The DOH directive inflicting this carnage on the lives of survivors violates the very philosophy DOH claims it stands by in its waiver manual: “The philosophy of the waiver supports the participants right to choose where to live, who to live with, and what goals and activities to choose.” The DOH “philosophy” goes on to say, “The individual is the primary decision maker” and the waiver “leads to personal empowerment, increased independence, greater community inclusion, self-reliance and meaningful productive activities.”

Survivors, their loved ones as well as those providing those services have a right to expect those words to be more than lip service. After all, if the current directive holds, some survivors will be forced back into institutions and others looking to leave institutions will find themselves trapped.

Denying freedom is not what the waiver or this country is about.