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The First Brain Injury Summit – A Step in the Right Direction

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While there are some difficult realities surrounding New York State’s Traumatic Brain Injury Waiver, all attendees at the first Brain Injury Summit held in Albany this week agree that the waiver is far more a blessing than it is a curse. Nearly 3,000 adults who live with brain injuries live in the community because of the waiver, and that is good news. There are also no plans to end the TBI Waiver. Deep breath all.

The summit was recorded and once I figure out how to post it online in its entirety, it will be posted. Transparency is critically important.

The attendees at this week’s two-hour summit, hosted by the Kahrmann Advocacy Coalition, pledged in no uncertain terms to work together to address the challenges now faced by waiver participants, providers and, not incidentally, by the New York State Department of  Health which deals with the perpetual pressures faced by any regulatory agency, particularly during hard economic times.

Those who attended the summit were (in alphabetical order) :

  • Marie Cavallo, president, Brain Injury Association of NY State
  • Bill Combes, NY State Commission on Quality of Care
  • Karina Davis-Corr, Providers Alliance
  • Peter S. Kahrmann, Kahrmann Advocacy Coalition
  • Mark Kissinger, Deputy Commissioner, NY State Department of Health
  • Sandra Ryden, Kahrmann Advocacy Coalition
  • Mary Seeley, acting Executive Director, Brain Injury Association of NY State
  • Joe Vollaro, Providers Alliance

While I can’t and won’t speak for the others at this meeting, I can tell you that discussion was wide ranging, direct, deeply respectful on all fronts, and serious. It was and is not lost on any of us that there are real financial pressures on everyone that are not of our own making.

I did say that they number one complaint I hear from people who live with brain injuries (and people with disabilities of all kinds) is we get treated like we are children, and in some cases like we are barely human. Part of the reason for this is a rather global lack of understanding about the brain and brain injury thus putting the most well-intentioned among us in the untenable position of having to make choices and decisions while not fully understanding the role the brain injury is playing in the person they are working with.

I also said, and all agreed, that there were no villains at the table, and this includes the DOH, the most commonly villainized of all. The DOH is like any other large entity. Some of its workers are great, some aren’t. 

As a result of the summit the Providers Alliance will begin to meet with the DOH at a cadence both parties agree on, and that is good news all around.

I am not going to go into a slew of details at this point. But I can tell you this, and if you know me or know of me you’ll know this is true, I genuinely felt everyone at the table truly gave a damn. If I did not feel this way, I would tell you.

I would be remiss if I did not also mention that I raised the subject of Timothy J. Feeney being only “moments” away from being part of the neurobehavioral project again, a disgraceful and despicable reality no matter how you hold it up to the light. However, the “hands” that manipulated the course that is poised to allow a clinical predator like Feeney back into the mix were not at the table. It is not yet clear who pulled the strings, but it will be. Trust me. It is just a matter of time.

One piece of Feeney-related good news that came to light at the summit is this: waiver providers are free to choose not to work with Feeney. Therefore, providers who do choose to work with him are, by default, acknowledging they don’t truly give a damn about the people they serve.

The next summit is scheduled for December 10, 2010.

 

Equal Rights Needs No Competition

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Groups promoting equal rights should never be in competition with each other. The fight for equal rights needs and deserves as many honest voices as it can get.

I am most directly involved with promoting the equal rights of people with brain injuries, with their right to live in the most integrated setting.

Fortunately in my state there are some solid voices involved in this fight. The Brain Injury Association of New York State is the leading advocacy organization in the state;  the Providers Alliance is comprised of companies and individuals who provide services so some who live with brain injuries are able to live in the community: the Kahrmann Consumer Advocacy Coalition is a statewide coalition founded by and run by survivors and their families;  the Brain Injury Coalition of Central New York is comprised of an extraordinary group of survivors, family members and health care professionals; the National Brain Injury Foundation in Utica brings hope and empowerment to survivors and their families; the Traumatic Brain Injury Services Coordinating Council (TBISCC) was 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, and the New York State Department of Health and the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities.

Given a recent productive meeting between the KCAC and Mark Kissinger, deputy commissioner for the New York Department of Health and his staff,  along with my knowledge and experience of those in all of the aforementioned groups, New York State is blessed to have them all and very much needs them all. There is no such thing as too many groups working for the right of all survivors of brain injury to live as independently as possible in the most integrating setting as possible.

The KCAC will be meeting with the Mr. Kissinger and his staff again in the next few months and has already reached out to the Brain Injury Association of NY and the Providers Alliance for a meeting. Moreover, we are already talking with both the NBIF and the BIC of Central New York. What is true about those in all the groups mentioned in this missive – including the DOH for those who may doubt it – is everyone’s heart certainly appears to be in the right place.

I hope and pray all of us are wedded to my favorite definition of humility – humility isn’t thinking less of yourself, it is thinking less about yourself  – and  join together, work together, and urge each other on. If any of us get caught up in the destructive winds of competition and ego, we hinder the very thing we are all really about – equal rights.

This is not the life path I was on when I was shot in the head 1984. I was writing, driving a New York City cab, and pondering a career as a paramedic. But the squeeze of a teenage finger changed all that. And so here I am, connected to some wonderful people and some wonderful groups throughout this state.

And so we keep on moving, one day a time, humble and humbled up, which is at it should be. Life happens to us whether we like it or not. It does not go on forever, so let us all join together and work  heart and soul to make the world a better place for all people. And that includes each other.

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