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

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.


3 thoughts on “The First Brain Injury Summit – A Step in the Right Direction

  1. Sounds like it was a positive meeting; a good start to what we hope is an ongoing dialogue. In a State of 18 or 19 million people, esp. in such difficult economic times, it's hard to understand why someone who continues to grossly misrepresent his credentials had his contract renewed, yet again!

  2. Its positive and in the right direction as long as DOH and other state regulatory asociations continue to collaborate and communicate with participants, families providers and advocates. Obviously the goal for everyone on the table is to provide quality services to people with brain injuries and others with disabilities. No one wants to throw the baby out with the bath water if I may use that expression. The waiver program is an innovative program that has helped thousands of people with brain injuries to live in the community like the rest of us instead of facilities. This has ensured a better quality of life, privacy and the safety and welfare of those in the program. Without the waiver program thousands of vulverable people with brain injuries would never had the chance to live in the community and receive services to help them achieve their goals and live a more meaningful life. Throughout the state and provider world there are people who have committed their lives and careers to work and help people with disabilities. They work long hours and go the extra mile every day. However they must safeguard the program from providers and contractors that are unqualified and unscrupulous and should not be working with people with disabilities. Awarding a contract to a facility who hires someone misrepresenting their credentials is certainly not in the right direction and it sends the wrong message to participants, their families and all the parties involved. The state promised the federal government and CMS in their contract to run the waiver, that only qualified providers and professionals will work with people with brain injuries. They certainly appear to have violated this central tenet. I am certain STIC will honor the contract and provide quality services and thats their intention. However it maybe prudent to re-evaluate their decision, hire the right person to move in a different direction setting an example for all.


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