In Praise of Bill Combes

When you live with a disability, in my case a brain injury, you encounter those whose commitment to your rights is rooted in self-serving lip service and then you encounter those whose integrity, compassion and commitment to people with disabilities is so real and genuine they glow. In the case of Bill Combes, I suspect this good and decent man can read by his own light.

Bill Combes worked out of the New York State Commission on Quality of Care (CQC) for something in the neighborhood of 30 years and as of Wednesday this week, has entered into well-deserved retirement. If ever there was one deserving of accolades from the White House to the State house to the house on Main Street, it is Bill Combes.  The CQC is the Protection and Advocacy agency contracted with the federal government for brain-injured New Yorkers like me. The only flaw in the CQC is, like all such agencies, they never have the number of staff they want, and, frankly, deserve.

Disability rights advocates like me always knew they would get a serious attentive audience when talking with Bill. We also knew that Bill and the CQC would do all it could to fight for the rights of brain-injured New Yorkers. Unlike the state’s Brain Injury Association and Traumatic Brain Injury Services Coordinating Council and, for that matter, the Department of Health, Bill Combes and the CQC always offered more than just lip service.

Those of us with disabilities have lost a wonderful ally now that Bill has retired. But, wherever he is, I hope he knows that all the lives he touched are better off because of him. Unlike too many others, he never experienced or treated anyone with any disability as being less than. The completeness of each person’s humanity and worth was never – and I mean never – lost on him.

I am blessed to know him and have had the privilege of working with him. Now it is his family’s turn to have the all of him, and this includes his first grandchild, a granddaughter; she’s in for quite a treat.

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.