The TBI Waiver: Seeking a Household Unified

New York State’s Traumatic Brain Injury Waiver came into existence in 1995. Essentially it is an admirable Medicaid program that offers a set of services that help people with brain injuries remain in the community and, not incidentally, costs far less money than keeping people in nursing homes.

Recently I am hearing some deeply disturbing  things, including, but not at all limited to, the following:

    • Survivors of brain injury are being told their services will need to be cut by contract employees of the New York State Department of Health who are not experts in the field of neurology and therefore would appear to be making decisions they do not appear qualified to make.
    • There is a service offered by the waiver called Independent Living Skills Training. According to the DOH’s waiver manual ILST “services may include assessment, training, and supervision of, or assistance to, an individual with issues related to self-care, medication management, task completion, communication skills, interpersonal skills, socialization, sensory/motor skills, mobility, community transportation skills, reduction/elimination of maladaptive behaviors, problem solving skills, money management, pre-vocational skills and skills to maintain a household.  ILST services are individually designed to improve the ability of the participant to live as independently as possible in the community. ILST may be provided in the participant’s home or in the community. This service is provided on an individual basis.”          However, I am hearing that survivors are having their ILST services cut against their will. Now I am sure that were one to look closely at those receiving ILST services there may very well be cases where services should be reduced, or stopped altogether. However, the problem, and it is a potentially dangerous one, is that the decisions to cut these services appear to again being made by people not qualified to make them.
    • There is another waiver service called CIC, Community Integration Counseling. CIC is essentially talk therapy designed to help a person living with a brain injury come to terms with living life with brain damage. Now I am hearing some survivors are being told to turn to the mental health community for their counseling. Again, dangerous. A brain injury is an injury, not an illness. Period.
    • I have also had some reports that some New York DOH contract employees are saying the waiver was never meant to be a permanent support for people with brain injuries. First of all, that is disingenuous, secondly, brain injuries do not entirely heal, and there are lifelong deficits some of us live with that will require support for us to remain in the community.

Now, I would be wrong to villainize the New York DOH as a whole. Like all government agencies that are under pressure to cut costs. All the more reason they deserve advocates standing with them against any and all forces that continue to put the quality of lives and the lives themselves at risk. Therefore all parties need to be at the table: the New York DOH, the Kahrmann Advocacy Coalition, the New York State Brain Injury Association and the Providers Alliance, a group of  40 or more waiver service providers.

Everyone involved in regulating and providing services as well as advocacy for people with brain injury should be at the table looking to remedy things. No one party, including the DOH, should be made or choose to go it alone.

Lincoln was right when he said, “A house divided against itself cannot stand.” A household unified can stand and then some.




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