A Dangerous Combination

What is becoming increasingly clear is the absence of regulations, the absence of clear cut policies and procedures, leadsto chaos and chaos leads to suffering. I am talking here about New York State’s Traumatic Brain Injury Waiver which is overseen by the state’s department of health. While recent posts have detailed the kind of callous treatment I’ve been enduring at the hands of the state’s DOH, I am not alone. Many are going through the same kind of experience throughout the state.

To date there are more than 50,000 readers of this blog and from time to time some of them take me to task, sometimes harshly. But, to their credit, their opinions are driven by the search for truth, a justifiable desire to hold me accountable, and, at times, a straight-up  difference of opinion. In other words, they hold my feet to the fire and sometimes when they take me to task, they are right. I’d be a fool to be anything but grateful to them, and I am. Very.

What is markedly absence from my readers when they take me to task is lip service. They say what they mean and mean what they say. The substance of their honesty is refreshing. They are a lesson in the absence of lip service, a lesson that ought to be learned by some in the department of health and even some in the advocacy community who say all the right things but do nothing. After all, we are talking about people’s lives, the quality of their lives and, in some cases, their ability to keep their lives.

A Dangerous Combination

The absence of regulations coupled with a penchant for lip service is a dangerous combination.

Some weeks ago I met with three DOH officials: Deputy Commissioner Mark Kissinger, Director of  Division of Home & Community Based Care Services Mary Ann Anglin,  and Deputy Director of the Office of Long Term Care Carla Williams. Truth be told, I genuinely like all three of them. Mr. Kissinger certainly seems to be a good and decent man whose heart is in the right place. Ms. Williams is an extremely sharp refreshingly no-nonsense individual and Ms. Anglin is an extraordinary thinker and communicator.

There are, however, two things (among others) that an advocate has to be careful about. One, as an advocate you can’t allow the fact you dislike someone or that someone dislikes you to drive your decisions. Conversely, you can’t allow the fact you like someone or that someone likes you to stop you from holding them accountable. Advocacy is not pain-free.

During this meeting Carla Williams said the state’s TBI Waiver is the best of its kind in the country. Well, a couple of things. Certainly having a waiver is far better than not having a waiver. No argument there. But, if New York’s waiver is the best in the country, that doesn’t say much for the waivers in other states, because New York’s waiver, which is absent any clear regulations, is, sadly, a minefield of dysfunction.

The Providers Alliance, a group of about 40 companies that provide waiver services has clearly documented that no clear-cut billing policy for waiver providers around the state exist and this has proven highly problematic and costly, both for the providers and survivors.

There have been instances, for example, when a doctor will issue a written order directing that a survivor needs staff to be with him or her throughout the day. The provider is compelled to, wants to and does provide the staff right away. The problem is there are times the DOH has not signed off on the service and may not do so for weeks, which means the provider may not get reimbursed for the service they’re providing.

To its absolute credit, the Providers Alliance has provided the DOH with a carefully thought-out series of recommendations to improve the unwieldy TBI Waiver manual (I’ve seen their work, it is superb), yet there has been no real response to their efforts. Curiously, the TBI Waiver manual lists six indexes, none of which are present in the manual!

Moreover, the DOH is informing quite a few survivors of brain injury around the state that there services will be cut and, in some cases, discontinued all together. The problem here is these decisions are being made by people who have utterly no understanding of brain injury, much less any real working knowledge of the human brain.


Actions Speak Louder than Words

Once when I was a boy I complained to my father about the fact some phrase was a cliché. My father, the greatest gift life has ever given me by the way, smiled and said, “Well, Pete, there’s a reason they become clichés.”  He was right.

Which brings me to the cliché, actions speak louder than words.

So, let’s compare Words versus Actions:

Words: The TBI Waiver manual provides a list of participants rights on Page 6, one of which reads says participants must “Be treated as an individual with consideration and respect”.

Actions: Waiver participants, including this writer, are having their services cut, reduced or delayed by the DOH without warning and, in my case and certainly others, without explanation. Moreover, requests for explanations are largely ignored. Consideration and respect?

Words: Participants must  “Be treated as an individual with consideration and respect”.

Actions: Capitol Region RRDS Natalie Marabello implies this writer is feigning the need for a life alert and white noise machines and further implies that he is wasting her time. Result? Ms. Marabello is promoted to Lead RRDS. Consideration and respect?

Words: DOH officials insist they will decide whether to approve requests for things like life alerts and white noise machines along with other forms of assistive technology and, in some cases, mediations, on the merits, and, in this effort ask for documentation from doctors supporting the request.

Actions: This writer and others across the state have requests in from assistive technology with the required letters from both a doctor and psychotherapist, the RRDC has signed off on the request and the DOH still does not sign off on it. What form of measurements, specifically, does the DOH use to determine the merits?

Words: One section of the participants rights in the TBI Waiver manual reads, “Have your complaints responded to and be informed of the resolution.”

Actions: The waiver complaint line protocol between the Brain Injury Association of NY State and the DOH not only fails to set forth any time lines within which a complainant must get a response, it fails to mandate that a complainant get a response at all.

The point is, all parties need to get together to resolve this, the DOH it seems has a penchant for behaving in a rather insular fashion, and this serves no one’s interest, unless of course we are talking about  Social Darwinism and all that drives the DOH is a desire to be the big kid on the block.

My hope is that all will come together and resolve all this, because in the mean time, survivors, families, and providers are suffering.




2 thoughts on “A Dangerous Combination

  1. Clearly you make some valid points. It should be pontd out however that teh provider alliance has been trying to communicate with DOH and offer some ideas about improvements but the DOH has not responded to them in any meaningful way. Any reasonable person will agree that if your vendors or providers offer a carefully drafted set of ideas that would enhance the program you should at minimum take them seriously. Well that has not happened. Second your point about RRDS. I relaize that the agencies housing the RRDC are contractated through the DOH but surely DOH has influcne about the qualifications of people hired as RRDS. Well the manual states all final decisions regarding services, and approval of plans rests with RRDS. However if someone will look closely into the qualifications of RRDS will be dissapointed to find out that there qare current RRDS without college degrees, RRDS without experience in the field of disabilities and certainly many without experience working with people with TBI. Yet they are expected to make decisions and approve plans and services. This reminds me of the insurance clerk sitting in desk at some insurance company making a decision as to whether or not to approve a drug or treatment or evaluation that a physician has ordered for a patient. There is clearly something wrong with this picture. Yet in the manual DOH has gone to great lengths to increase the qalifications of providers and rightly so how can they be comfortable with their contractors hiring people to make important decisions and implement their program without equally high level qualifications and experience. People with disabilities deserve better.

    1. There are many people working as ILST, PBIS, etc. who have never even taken a course in brain injury and its complications. I attended the Rusk Institute for 5 years as a survivor, and I can tell you I have been put through the wringer by the very agencies that are supposed to provide my support. What I represent to these agencies is a dollar figure. There are many good people working in the field, but since schooling in neurological affects is not stressed, brain injury patients are treated like psychological cases. We are graded on how well we perform as if we are trained monkeys, and the DOH spend its bureaucratic oversight on overseeing plans that are ludicrous and detrimental to the survivors’ psyches. (I do not appreciate being told that I move too much, when the housing I am living in is marginal. If the roof is leaking, what are my options?)


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