Exposing NYS’s Brain Injury Patterns

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.

Stay tuned…



Next Book: Brain Injury

Since I suffered my brain injury in 1984 when I was shot and since I began working in the field of brain injury in 1995 I’ve witnessed the presence of the heartfelt commitment of the extraordinary among us as well as the presence of the greedy, self-serving, narcissistic and dictatorial.  I’ve written pages of notes about my experience and with the end of the memoir now in site, one of my next writing projects will be a tell-the-truth book about my experience in the world of brain injury.

Some will be pleased, some won’t. Some will be surprised, some won’t.  Some will be happy, some will be angry. Some will agree, some will disagree. How do I feel about all this? I don’t much care. My responsibility is to be honest and tell the truth to the best of my ability.

One of the things I will write about is what one might call the non-profit myth. The notion that if an agency, company or advocacy group is non-profit it means it really cares. Not so. To be sure, there indeed are terrific non-profits  like the Rochester-based CDR (Center for Disability Rights) headed up by Bruce Darling. CDR is all one could possibly hope for in a non-profit as both a service provider and  advocacy organization.

However, I’ve seen individuals in leadership positions in non-profit settings that are all about themselves. They  have arrived at the rather stupefying notion that the world revolves around them. They lay claim to the advocacy mantle when in truth they offer only lip service and consider their environments to be little more than petri dishes in which they can grow the bacteria necessary to further their self-aggrandizement. As a result, when it comes time to leap into the advocacy trenches and have at it, they are nowhere to be seen. Brain injury survivors and their loved ones along with quite a few healthcare providers know who stepped up to the plate and who didn’t when the New York State Department of Health decided to bring Timothy J. Feeney of bogus-college-degrees fame back into the fold. Brain injury survivors and their loved ones along with quite a few healthcare providers know who spoke up and who remained silent when the state’s DOH began to tell waiver providers they cannot support brain injury survivors at Medicaid Fair Hearings.

No organization of any kind, for-profit or non-profit, ought to be about or solely reliant on only one person or a handful of people.

I will also write about the for-profit myth, the myth that says anything that is for-profit is greed based. While this is often true, there are times it’s not. Until recently, Cortland, New York’s CCRP (Cortland Community Re-Entry Program), a for-profit that operated under the oftentimes problematic umbrella of Healthcare Associates, was one of the best if not the best Traumatic Brain Injury Waiver program in the entire state. The program crumbled when, after the untimely and tragic death of the head of Healthcare Associates, Anthony Salerno,  the running of the organization fell into disarray and CCRP fell apart, but not because it was a for-profit.

I may well write more about this upcoming writing project, but this is enough for now. Stay tuned.


Answering a Reader’s Questions

Recently a reader posted the following comment to an August 12, 2008 blog essay about my mother’s suicide called Dusty Stones: Notes On A Suicide. The well thought out comment reads as follows: 

  • The New York State Education Department, Division of Professional Licensing, establishes ethical guidelines for the practice of the professions it monitors and regulates.
  • What are their guidelines in this important and delicate area?
  • Was this Therapist actually licensed by the New York State Education Department and subject to its disciplinary authority and review?

The were no doubt related to Fred Drobin, the psychotherapist who worked with my mother and, the day after her suicide, told me he had to end our phone conversation because his dinner was getting cold.

Here is my response to this reader, whose comment and questions are deeply appreciated. The reader is right that the New York State Education Department, Division of Professional Licensing, establishes ethical guidelines for the practice of the professions it monitors and regulates. The problem is New York, like most states, only has what’s called title protection, meaning you can’t call yourself a social worker, psychologist, psychiatrist, etc., without certain education credentials and you must be licensed by State Ed.

The problem in the case of folks like Drobin and the poster-boy for misrepresentation, Tim Feeney, is you can call yourself a psychotherapist or behavior specialist or life coach and more and because none of these titles are included in the list of those that fall under the title-protection umbrella, you can pretty much get away with it.

Equally disturbing is the fact there are only something like eight or nine states in the country that make it a criminal offense to misrepresent your education credentials, and in these states the crime is only a misdemeanor.

Drobin continues to practice as a psychotherapist in Nyack, New York and Feeney has essentially been hired to work with brain injury survivors for the state. Like I said, the rules are frayed and lax and the cost to the lives of many is brutally high.