Monthly Archives: March 2011

NY TBI Waiver: Not Always Health or Care

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I’ve been living in a new county in New York for four months now and I am still waiting for the TBI Waiver’s RRDC (Regional Resource Development Center), the contract employee of the state’s Department of Health that represents the DOH and oversees those who provide waiver services and waiver service recipients, like myself, in a particular region, to approve my service plan.

Not a surprise, though it should be.

Now, to say the the state’s DOH has been anything but impressive in it’s management of the waiver of late is an understatement. Let’s add another fact to the mix. The RRDC in my area is STIC,  the Southern Tier Independence Center in Binghamton.  Have you read about them before in this blog? Of course you have. They’re the ones who hired Timothy J. Feeney of fictitious college degree fame to play a major role in STIC’s new contract for the Neurobehavioral Project linked to, wait for it, the TBI Waiver.  When STIC’s executive director, Maria Dibble, was notified that Feeney’s claim to have a valid masters and doctorate was bogus, it apparently didn’t matter.

Is it any wonder there is some inexplicable delay in signing my service plan? I am waiting for a discharge from the waiver notice any day now claiming that somehow the brain injury I live with has, what, gotten better? In truth, it debilitating impact on my life has increased dramatically. But I don’t expect that matters to some either.

As a side note, or perhaps not so side note, it is also worth noting that I’ve yet to receive a decision from my Fair Hearing held on December 1, 2010, a Fair Hearing in which we sought to reverse the DOH’s denial of my request for a life alert and white noise machines given the increase in sound sensitivity I live with. And hey, this month is an anniversary of sorts, given that it is now one year since we first asked for them.

Like I said, the TBI Waiver is not always healthcare because sometimes it lacks commitment to health and sure as hell lacks care.

Happy 60th Anniversary

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Today would have been my parents 60th wedding anniversary. They were married March 17, 1951 at the Central Presbyterian Church in Montclair, New Jersey. The minister was the Reverend Morgan P. Noyes. I recently found a picture of Mr. Noyes. The picture, taken June 22, 1938, is of a group of people just awarded honorary degrees by Yale University.  Remarkably enough, the group includes writer Thomas Mann and Walt Disney. Sadly, Mr. Noyes’s face is blocked by the Reverend Endicott Peabody in the first row.

There is nothing unique or special in my saying that I miss both my parents very much. Their marriage was my father’s first and my mother’s second. Her first husband had been an RAF pilot in World War II. To her dying day my mother had special place in her heart for England and the English, for good reason. She lived in London while England endured the savagery of the London blitz, a 57-day bombing campaign ordered by Hitler to demoralize the British which began on the afternoon of September 7, 1940. The campaign did anything but demoralize the British, though the damage and carnage was beyond brutal.

My father served in the 20th Armored Division in the war, one of three U.S. divisions, the others being the 42nd and 45th Infantry Divisions, credited with liberating the Dachau Concentration Camp, something my father never mentioned. Like many veterans, my father did not speak about his war experiences. Once when I was around six or seven, we were watching a movie together, scene was of a soldier crawling among the rubble after a bombing trying to find a woman he feared was killed in the attack. I looked over at my father and tears were streaming down his face. I threw my arms around him. He hugged me back and asked me not to tell my mother. I never did.

They met after the war. He was teaching English Literature in Columbia University and she was one of his students. She was 10 years his junior. While time and distance has helped me understand what romance there was between them did not last, they were good friends and shared a love of music, dance, museums and books; all loves they successfully passed on to me. They were also very civil rights oriented. Our family’s minister marched with Dr. Martin Luther King Jr. and while my mother worked to free herself of slivers of racism, something she readily admitted to and admitted were things she needed to get free of, my father didn’t have a racist or bigoted molecule in his makeup.

My father died way too soon in 1969. He was 55 and I was 15. My other ended her own life at age 68 in 1992. No matter how or when they left the world, there is no easy way to lose a parent. And while I do not know what if anything comes after this life, I do know that when all is said and done, both my parents have made my life a better place to me.

Happy Anniversary, Mommy and Daddy.

Next Book: Brain Injury

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Since I suffered my brain injury in 1984 when I was shot and since I began working in the field of brain injury in 1995 I’ve witnessed the presence of the heartfelt commitment of the extraordinary among us as well as the presence of the greedy, self-serving, narcissistic and dictatorial.  I’ve written pages of notes about my experience and with the end of the memoir now in site, one of my next writing projects will be a tell-the-truth book about my experience in the world of brain injury.

Some will be pleased, some won’t. Some will be surprised, some won’t.  Some will be happy, some will be angry. Some will agree, some will disagree. How do I feel about all this? I don’t much care. My responsibility is to be honest and tell the truth to the best of my ability.

One of the things I will write about is what one might call the non-profit myth. The notion that if an agency, company or advocacy group is non-profit it means it really cares. Not so. To be sure, there indeed are terrific non-profits  like the Rochester-based CDR (Center for Disability Rights) headed up by Bruce Darling. CDR is all one could possibly hope for in a non-profit as both a service provider and  advocacy organization.

However, I’ve seen individuals in leadership positions in non-profit settings that are all about themselves. They  have arrived at the rather stupefying notion that the world revolves around them. They lay claim to the advocacy mantle when in truth they offer only lip service and consider their environments to be little more than petri dishes in which they can grow the bacteria necessary to further their self-aggrandizement. As a result, when it comes time to leap into the advocacy trenches and have at it, they are nowhere to be seen. Brain injury survivors and their loved ones along with quite a few healthcare providers know who stepped up to the plate and who didn’t when the New York State Department of Health decided to bring Timothy J. Feeney of bogus-college-degrees fame back into the fold. Brain injury survivors and their loved ones along with quite a few healthcare providers know who spoke up and who remained silent when the state’s DOH began to tell waiver providers they cannot support brain injury survivors at Medicaid Fair Hearings.

No organization of any kind, for-profit or non-profit, ought to be about or solely reliant on only one person or a handful of people.

I will also write about the for-profit myth, the myth that says anything that is for-profit is greed based. While this is often true, there are times it’s not. Until recently, Cortland, New York’s CCRP (Cortland Community Re-Entry Program), a for-profit that operated under the oftentimes problematic umbrella of Healthcare Associates, was one of the best if not the best Traumatic Brain Injury Waiver program in the entire state. The program crumbled when, after the untimely and tragic death of the head of Healthcare Associates, Anthony Salerno,  the running of the organization fell into disarray and CCRP fell apart, but not because it was a for-profit.

I may well write more about this upcoming writing project, but this is enough for now. Stay tuned.

 

Disrespecting the Last (and All) WWI Veterans

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No excuse, not if you care a whit about what our young men and women endured in World War I; not when the very last doughboy has just died at 110 years of age; not when this man gave his all always for his country. And now, the Republican and Democrat leadership in congress in the persons of John Boehner and Harry Reid have denied the family’s and West Virginia’s request that Frank Buckles lie in honor in the capitol rotunda, something that would honor all those Americans who fought in World War I, my grandfather being one of them.

Boehner enlisted in the Navy in 1968,  only to be discharged with a bad back eight weeks later and from what I can tell, Reid was never in the service.

Bravo to Shelley Moore Capito, the Republican Congresswoman from West Virginia who is fighting hard to make this well-deserved honoring of Mr. Buckles and all WWI vets a reality.

How do the members of congress sleep at night when they make decisions like this? Never mind the 4.7 million Americans who served during WWI, never mind the more than 100,000 that died, and the hell with the more than 200,000 wounded. And, by the way, never mind the large majority of Americans who would very much like to see Mr. Buckles and all who served in World War I honored as requested.

To deny this honor to Mr. Buckles and all  WWI veterans is disgusting, despicable and, by the way, un-American.

$16 for Food

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When I first read it I thought my eyes were deceiving me. They weren’t. This afternoon I received notice from Delaware County, New York informing me that I’ve been awarded $16 a month in food stamps. A few months ago when I lived in Albany County, New York, I received $130 a month in food stamps, and they helped, enormously.

I’ve known hunger – real hunger – in life.  When I was homeless I twice received medical treatment for hunger pains which are, in a word, brutal.

Needless to say, I am going to appeal, especially since there has been no increase in my revenue and anything but a decrease in my overhead.

There a very few blows in life that wound so deep they buckle my knees; this one did.