How could it happen?

After reading a recent blog piece about a New York State brain injury council being in total disarray a friend of mine asked, “How could it happen?”

Good question.

How could a council, formed by an act of a state legislature, drift so glaringly far from its mandated purpose? The New York State Traumatic Brain Injury Council (TBISCC) is, “Under Article 27-CC of the New York State Public Health Law…mandated to recommend long-range objectives, goals and priorities, as well as provide advice on the planning, development and coordination of a comprehensive, statewide TBI program.” Yet, as readers of this blog already know, nothing has happened.

There are two people claiming to be chair and vice-chair who aren’t. If the council were to abide by its by-laws, one of the two hasn’t been a member of the council for more than nine years.

What is it that leads people to turn a blind eye, remain silent, including other council members, when others blatantly break the rules? That, and what leads those who break the rules to do so knowing their actions will damage the lives of people with disabilities, in this case New Yorkers with brain injuries? It is not a coincidence that several of the current vacancies on the council are meant for people with brain injuries, yet the agenda for the upcoming December 10 meeting doesn’t mention this.

Back to, how could this happen?

When my friend first asked the question the first thing that came to mind was Abraham Lincoln’s quote: “Nearly all men can stand adversity, but if you want to test a man’s character, give him power.” 

Sit in on a few meetings with Michael Kaplen ( he still insists he is the council’s chair) and you’ll quickly learn he is a bully. I’ve been in meetings with him as participant and observer and witnessed him yelling at people and threatening people. Judith Avner, whose term on the council has been over for more than nine years yet still claims to be the council’s vice-chair, is another kettle of fish entirely. She charms, cajoles, and, were there awards for lip-service skill, would win gold or silver every time.

Having said all this, Avner and Kaplen are not hard to understand. Both strike me as being rather weak and insecure people who, by inflicting their will on others are able to feel some sense of control in life and some sense of, well, power. But what’s the cost? New Yorkers with brain injuries and their loved ones suffer as a result. The fact Kaplen and Avner, both attorneys, know their behavior leaves New Yorkers with brain injuries in the lurch reveals a lack of character.

The real question is, what empowers the enablers? The New York State Department of Health knows full well the council is a mess. Thus far it has said and done nothing. In fact, it sends high-ranking staff to council meetings and answers some council questions.  Perhaps one reason for the lack of DOH oversight can gleaned by  considering a July 5, 2011 blog post: “Minutes from a September 9, 2003 meeting say the council drafted a letter to then DOH official Betty Rice expressing the council’s dissatisfaction “with not being allowed to review (TBI Waiver Manual’s) revisions.”  This underscores what has been an ongoing pattern with the DOH for years; they are not interested in outside input. An ineffective council is to its liking.

But why the silence from other council members? Why the silence from members of the NY State Legislature? What are people afraid of, if, in fact, it is fear that gets in their way?

Perhaps, if council members, and others, listened to and heeded the advice of two heroes of mine (and many others) things might take a turn for the better.

  • Elie Wiesel: “Take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented.”
  • Dr. Martin Luther King, Jr:  “Our lives begin to end the day we become  silent about things that matter.”

This writer did send an email along with information about the council to Dr. Nirav Shah, the New York State Commissioner for the Department of Health.

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!