Preview: Proposal for NY State’s TBI Waiver: the Three Elephants in the Room

Although New York State is still reviewing it’s Traumatic Brain Injury Medicaid Waiver Program, one thing appears clear already, the waiver will be moved into managed care. The question is, will revisions to the structure of the waiver services  best serve the nearly 3,000 New Yorkers with brain injuries currently on the waiver, future waiver participants, and best serve the providers who are, in the majority of cases, trying with all their might to their level best?

The jury is still out.

Over the next week or so this blog will be offering a proposal that will be published in three parts. What will become of it will ultimately depend on several things: the commitment of government officials, the commitment of those who provide waiver services (the majority of them are superb, the question is will they be able to manage and, if necessary, expose the problem providers who are, thankfully, in the minority), the inclusion of people who live with brain injuries, their families, and advocates in the discussion, and, last but not least, the inclusion of persons who understand the brain: neuropsychologists like Albany-based Dr. Maria Lifrak, and neurologists.

Historically, this kind of inclusiveness has been missing.  And, while all parties say they are committed to providing the best services,  we all know that actions speak louder than words.

The waiver came to New York in 1995 as a result of the heartfelt efforts of people with brain injuries, their families, advocates, and, very much to their credit, health care professionals. It was clear then and even clearer now that many of us who live with a brain injury can, with varying degrees of support, remain in the community, and not, as all too often happened in the past, find ourselves tucked away in nursing homes. Furthermore, it costs less money to support someone in the  community than it does in a nursing home.

The phrase, the elephant in the room, is highly applicable here with a small revision: there are three elephants in the room. If the state truly addresses them, it will be able lift its head with justified pride, dramatically improve the services provided by the waiver, and save even more Medicaid dollars in the process. If the state, i.e., the powers that be, operates in a vacuum, meaning they might have held public hearings but the fix is in, life will get worse for New Yorkers with brain injuries, their families, and those who provide services to them.

Including all stakeholders in the program’s design (not just at public hearings) is a must. Doing so guarantees a program that will run with a higher degree of efficacy and dollars.


The Three Elephants

Elephant #1: Lack of knowledge about the brain on virtually all fronts.

Elephant #2: The New York State Traumatic Brain Injury Services Coordinating Council.

Elephant #3: Lack of effective oversight of those providing services to those on the waiver, a problem which is severely exacerbated by Elephant #1.


Next: Elephant #1


Note to reader: Please forward this blog piece and the upcoming proposal segments to all interested parties. Thank you!


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