Thoughts on New York TBI Waiver

One of the primary challenges faced by New York State’s Traumatic Brain Injury Waiver is a lack of understanding of the brain exhibited by the majority of those provider services to those of us who live with brain injury and by those saddled with designing and implementing the waiver in the first place. There are also those who provide services to those of us who live with brain injuries whose sole purpose is to keep us dependent on them so they can rake in the dough.

The waiver is a Medicaid program that began in 1995 that pays for services designed to keep people living in the community. It’s stated purpose is both honorable and needed. However, its design and implementation  has its problems. It is reasonable to expect this with  any relatively new program but the waiver is fifteen years old now and should be in better shape than it is. For example,  providers ought to receive reimbursement for staff training directly related to brain injury. Right now this kind of staff training puts an unfair strain on provider coiffures.

It must be acknowledged at the outset of this missive that there is much that is positive about the waiver, primarily the fact that its very existence afford some who live with brain injuries to live in the community as opposed to be warehoused in institutions. The problem though is that a number of those who provide services under the waiver make choices that appear to be more driven by the desire to keep someone on the waiver rather than help them reach their maximum level of independence. In other words, an unhealthy form or profit motive coupled, in some cases by the dysfunctional and cruel desire to control others, defeats the very purpose of the waiver in the first place, and in some specific cases, ought to result in criminal charges given that  indentured servitude (and slavery) is against the law.

It seems to me that the way to approach the challenge of improving the state’s waiver is to not come into the process pointing fingers. You come into the process steadfast and tenacious in your commitment to get the bow of the ship, so to speak, headed in the right direction. There are many on all fronts: advocacy, family, survivors, department of health officials, a providers who are committee to doing the right thing. They must be joined in their commitment to this. However, the must be equally joined in exposing any person, process, agency or official who is part of the problem.

Those who are part of the problem need to be exposed and dealt with.



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