There is real truth to the notion that much of advocacy consists of bringing things into the open. Things must be brought into the open. Why? Because we are talking about equal rights and some of the primary fuels for preventing equal rights are secrecy, intimidation and the need some have to be in control.
When it comes to brain injury, New York is not suffering from a lack of controlling individuals, secrecy, and intimidation. Hell, it seems to thrive on it. The only ones that don’t thrive on it are those who live with brain injuries, their loved ones, and the service providers in the state who really do give a damn.
There are quite a few groups in the state who publicly claim to care: the New York State Department of Health, the TBISCC (Traumatic Brain Injury Services Coordinating Council), the Brain Injury Association of New York State, and the Provider’s Alliance, to name four. It’s easy to say you care. It’s now time to match word with deed with relentless tenacity.
The Providers Alliance is comprised of about 40 to 50 companies who provide services for the state’s Traumatic Brain Injury Waiver; most of the providers in this group are very good.
The DOH is the bully on the block. In addition, they are about as secretive and insular as it gets. They are a rather poisonous presence at the moment.
I’ve had a long relationship with the Brain Injury Association and like any lengthy relationship it’s had its ups and downs. While they say they are “a statewide non-profit membership organization that advocates on behalf of individuals with brain injury and their families,” their dead silence on several issues, most recently the DOH directive to block service coordinators from siding with their clients at Medicaid Fair Hearings, is deeply disturbing.
In a letter from the TBISCC to providers, survivors, and interested parties, the council said they were “formed by (an) act of the New York State Legislature to advise the Department of Health regarding service needs of persons who have sustained a traumatic brain injury.” One question is how many proposals and suggestions has the council presented and how has the DOH responded? If the council holds the DOH accountable and does so publicly, I mean really publicly, they can be a force to be reckoned with.