Monthly Archives: December 2010

The Danger of Silence

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There is little doubt silence has played a significant role in enabling the the denial of civil rights to, not just brain injury survivors, but all people with disabilities.

Rarely does main stream media so much as lift its pen to speak out on the dysfunction and, yes, moral corruption, that, to focus on the group I currently pay closest attention to, people who live with brain injuries.

The troubling silence of the main stream media is, sadly, not surprising, and perhaps that will change in the near future. What is far more troubling is the number of voices from within the world of brain injury that remain unheard. Voices on both the advocacy and provider front.

Yes, there are survivors and family members who remain silent, but I can tell you their silence is, more often than not, driven by fear of very real threats.

And the excuses for the silence boggle the mind! Take the fact Timothy J. Feeney continues to misrepresent his credentials to brain injury survivors, children with disabilities, their families and more. Someone I like and respect recently said, while referencing the contract the New York State’s Department of Health essentially handed Feeney despite knowing of his deceit, “Well the contract doesn’t require” he have a masters degree and PhD, as if somehow this fact negates the need for any advocate or advocacy group worth an iota of merit to confront that fact the man misrepresents himself to vulnerable human beings.

Then, of course, you have the NY State Department of Health who has not only handed the reins back to Feeney but has taken steps to undermine the rights of brain injury survivors in Medicaid Fair Hearings has been met with silence in some advocacy quarters as well.

There is no excuse for silence when people are being denied their civil rights. My patience with some who remain silent is beginning to run out.

 

NY State DOH Snubs Brain Injury Summit

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Despite agreeing to continue attending the brain injury summits, the New York State Department of Health today was a no-show. The snub was  a blatant act of disrespect for the groups who did attend the second Brain Injury Summit: The Brain Injury Association of New York State, the New York State Commission on Quality of Care and Advocacy for Persons with Disabilities, the Providers Alliance and the Kahrmann Advocacy Coalition. Moreover,  it further underscored the ongoing problem of poor communication on the part of DOH, a problem DOH Deputy Commissioner Mark Kissinger acknowledged the DOH has at the first summit this past September.

The snub served to further enhance the view that the DOH has very little respect for brain injury survivors. The DOH didn’t even have the decency tell people they weren’t coming. Keep in mind, this is the lot that gave the “keys” back to PhD-Wannabe Timmy Feeney.

The summit attendees did very much agree on a response. Given the response was a group design, it would be inappropriate for me to elaborate, other than to say the response is rooted in a genuine care and concern and commitment to assure that brain injury survivors and providers are given the kind of support and clarity they deserve.

I can also tell you that all in attendance were heartfelt and genuine in their commitment to help brain injury survivors grow their independence and, it must also be said, that all in attendance, this writer included, continued to express a willingness to work with the DOH.

However, if you’ll allow me a shot at pointing out the obvious, it is hard to work with anyone who doesn’t bother to show.

The third summit is scheduled for February 11, 2011.

Brain Injury Summit II This Friday

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The second Brain Injury Summit will be held Friday morning in Albany.  Those invited included the Brain Injury Association of NY State, the New York State Department of Health, the New York State Commission on Quality of Care, the Providers Alliance, the Brain Injury Coalition of Central NY, and the Kahrmann Advocacy Coalition.

Given that effective and fluid communication between all is a challenge not uncommon in any multifaceted system, communication will be the primary focus.

The DOH of late has taken a great deal of heat, both from this “pen” and from others. It is my sincere hope that some of the challenges now being faced by survivors, providers, advocacy groups and, not incidentally, the DOH are clarified so when all parties leave the summit, heads are in a more serene place, there is greater clarity all around,  and the commitment to open and effective communication is, in some instances renewed and in other instances begun.

All parties actively took part in the first summit and I fully expect the same this time. There are some justifiably frightened survivors across the state and some understandably worried providers. To say lives are at risk is anything but an understatement.

 

Michael’s Birthday

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Tomorrow my closest friend celebrates his 59th birthday. In our hearts we’re brothers.

Over the years I’ve thought about how I should write about Michael Sulsona. In addition to be a remarkable man with a capacity to seamlessly accept the realities of life like no one I’ve ever known, he is one of the best playwrights and screenwriters in the country.  But to write about him, to write about this friendship of ours, this brotherhood of ours that has lived for more than 35 years at this point, how to do that?

Trying to accurately tell you how much I love Michael, how much this man’s presence in my life has meant to me all these years is impossible. I’d be more successful describing the Grand Canyon to someone – over the phone. In other words, the task of writing the all of it is clearly impossible.

I can tell you that Michael was an early lesson for me that disability can mean anything but. Michael, a former (and always) Marine lost his legs in Vietnam. It was Michael who taught me you don’t have to stand up to stand tall.

I can tell you that Michael and, as they each entered the world, his sons, Vincent and Philip, have been the the only steady presence in my life. In other words, they are family. Once, not long ago when talking with Phil, I said, “Sometimes I feel like we’re family.” Phil looked at me, smiled, and, gently correcting me, said, “Uncle Peter, you are family.”

Now that I think about it, that is the gift of Michael (and his boys) for me. They have given me family, themselves. No matter what has happened in my life, they’ve been there. And for a man who has been on his own since he was 16 years old, there is no greater gift than family, real family, family of the heart like Michael, Vincent and Philip and now, blessedly, Michael’s wife Frieda.

I know I would have gotten through things like the shooting, my mother’s suicide,a fight with alcoholism and more had Michael not been in my life. But getting through them would’ve been a helluva lot harder and I’m not sure I would have weathered things as well as I have.

Happy Birthday, Michael. I love you very much. You too boys. You too Frieda.

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Photo by Frieda Tucker

Memo to Survivors & Providers: Shine the Light!

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If I have learned one thing I have learned that the New York State Department of Health hates publicity. They hate it when their actions are brought into the light of day. And so, given their reluctance to change their clearly punitive behavior towards brain injury survivors, their loved ones and, not incidentally, those who provide services to same across the state, I am urging all of the aforementioned to openly share their stories. Don’t embellish and certainly don’t lie. Simply state the facts of the matter as you honestly know them. The facts speak for themselves.

In yesterday’s Fair Hearing it was crystal clear that the DOH, represented by RRDSs from the Capitol Region, were looking for any excuse to deny my request for white noise machines and a life alert (see preceding blog post). Not only was the tone of their stance, voiced primarily by RRDS Maria Relyea, venomous, it was rooted in a willingness to change the rules at a moment’s notice simply to wound the survivor, in this case me.

Across the state the DOH is looking to jettison people off the traumatic brain injury waiver or, if not that, cutting their services so drastically life becomes even harder for the survivors. I can tell you that living life with a brain injury is not so easy a task in the best of circumstances.

A DOH Trap for Providers

The DOH has also set what might be called a trap for providers. If they don’t tell the provider outright they can’t support their client at a Fair Hearing, they’ll tighten the purse strings by telling the provider if they do appear at the Fair Hearing on behalf of the participant they won’t get paid. A nasty form of manipulation. What’s the trap? Some providers are playing the you need to subpoena us to appear with the participant card. If they are subpoenaed they’re paid, and they should be. However, by playing hat card they walk full length into the DOH’s penchant for accusing providers of being in it for the money. So while the urge to play the subpoena card is understandable, strategically it is a blunder, albeit an understandable one.

Shine the Light

What providers and all others should do when encountering this behavior is  publicize it. Let local, state and national media know. Start a blog, start a web page, or post it on the web page you have. It’s okay to be afraid but don’t let it scare you.

Whatever your political walk of life, there can be no arguing that President Obama was right when he said, “Sunlight is the best disinfectant.”  And if there is anything the behavior of the DOH needs when it comes to the facts just mentioned, it’s a hefty dose of disinfectant.

Shine the light.