An Update for My Readers

Since the birth of this blog in late 2006 this has been the longest stretch of “silence” on my part. I thought it might be a good idea to bring regular blog readers (there are more than 1,500 of you) up to speed.

As some of you know already, I recently moved to Berkshire County in Western Massachusetts. I am steadfastly going through box after box of my belongings, deciding what to keep and what to toss. It is astonishing how much stuff one accumulates over the years. I work on this culling process on a daily basis and, after careful calculation, have determined that I will complete it on April 15, 2032, at 2:07 p.m.

I have several times been tempted to write about New York State Governor Andrew Cuomo’s proposed state agency that would, or so the governor says, pursue allegations of abuse of people with disabilities in the care of the state. In my view the proposal is little more than a headline grabber intended to make the governor look good – or so he hopes. It is especially troubling when the 100 or so companies that came out in support of the proposal are, for the most part, the very companies that would be overseen by the agency. Disability rights advocate Michael Carey is spot on accurate when he said the governor’s proposal was an example of the fox guarding the henhouse. Carey’s 13-year-old son, Jonathan, who lived with autism, was killed while in the care of the state.

I advocated for people with brain injuries for years in New York State and, until recently, the state never informed people with brain injuries what the results of their complaints were. This withholding of information was by design, not by happenstance, and it serves to underscore Mr. Carey’s point.

If New York or any state is sincere about tracking allegations of abuse for those under state care, they’ll make sure it is done by an independent group. The fact the proposed agency would be a state agency serves to document the insincerity of the proposal.

Here’s a suggestion. If New York State wants to get serious about protecting people with disability in its care, an independent entity like the Center for Disability Rights out of Rochester might well be the way to go.

Enough on this – for now.

I’ve been back on my bike for the first time in a long time and it feels good. I live near Mount Greylock. At nearly 3,500 feet it is the tallest peak in Massachusetts and there is a road filled with switchbacks that winds its way to the top. The climb is about six and a half miles and I have every intention of biking that before winter arrives. I also have my eyes on a bike ride of about 50 miles to help raise funds for the Western Massachusetts Food Bank.

And, of course, I am reading, voraciously as always. I do not think I would have lived as long as I have without books. I mean this sincerely. They have provided refuge for me during difficult times and vacations for me during good times.

I’ve received a emails from people lamenting the fact I was not at this years conference hosted by the Brain Injury Association of NY State. I was not invited. BIANYS leadership does not like being held accountable, at least not publicly, and certainly not by me. There are good people on the BIANYS board and I think those at the head of BIANYS are essentially good people. But they need to humble up and realize that the world, meaning, in this case, the association, does not revolve around them.

I can remember some time ago when BIANYS leadership, to its credit, had a number of us who facilitated support groups meet to discuss ways of improving and growing the support groups. Nothing came of it. In fact, when I suggested that BIANYS take a page from the Brain Injury Association of Massachusetts and run background checks on group facilitators, the idea was immediately shot down by Judy Avner, the executive director, because, she said, it would be too costly. I pointed out, to no avail, that were a group facilitator to do something truly out of line somewhere down the road, not only would group members suffer, but, when it came to light that BIANYS willfully chose not to run background checks on group facilitators, things would be far more costly.

Enough on this – for now.

Those of you who know me and know my own struggles with my brain injury and PTSD will be happy to know I am getting out of the house more than I was a few months ago. I am, like you are, a work in progress.

It has been good writing this rather rambling missive to you all. I wish I could truly tell my regular readers how very grateful I am to you, and how humbling it is for me to know you read my writing on a regular basis. To those passing by, thank you for the visit. And to all of you, I hope life is treating you well, and always, always, remember to live.

And yes, I’ll be back.

Next Book: Brain Injury

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.

 

Days in Brain Injury Health Care – Part I

“Remember,” a close friend of mine said when I’d just begun to work in the brain injury health care field around 1995, “This field attracts some of the most caring people and some of the most emotionally dysfunctional people you’ve ever met.”

My friend was right.  Some of the people I’ve met in the health care field over the years are the most selfless, hard working, compassionate, empowering and healing human beings walking the face of the earth. Others are some of the most controlling, selfish, heartless, greedy, demeaning, dishonest, self-absorbed and despicable people imaginable.

There are, however, some common pre-conceived notions that are not accurate. All people who work for regulatory agencies like the department of health are not heartless bureaucrats. I’ve met some genuinely caring people in the bureaucracy. Conversely, one cannot assume all people who work for advocacy organizations or health care providers are caring and compassionate.

It took me quite some  time, even with my friend’s rather prescient warning, to realize all this. I used to think that somewhere inside all people lurked a genuine sense of caring for others. Wrong. There are people who can come face to face with making a choice that will deny someone their right to heal, their right to the best possible treatment, not to mention their right to equal rights, and make the choice anyway. Choices like these can stem from several things, or a combination of several things: greed, the need to control,  hate, anger, and or the inability to realize the person or persons you are wounding are, just like you, full fledged human beings.

More than once over the years, twice actually, I’ve been taken in by charismatic business owners who convinced me they were oh-so-dedicated to helping people living with brain injuries gain or regain their independence. One such owner hired me and a friend of mine, Jimmy, we later realized, because I have  a brain injury and Jimmy has a spinal cord injury. We were, as Jimmy once put it, the token gimps, though neither of us realized it at the time.

I will not name this owner because I genuinely loved this troubled man and because he never did anything purposefully to wound my personal life, nor did he spread lies about me and seek to damage me personally and professionally.  Something that cannot be said for John Mccooey, owner of the Belvedere Brain Injury Program. 

Mccooey pretty much used me to help save a floundering program he’d inherited. We worked closely for years. I’d mistakenly thought we were friends. When Belvedere opened a substance abuse program and the program’s leadership began treating participants like dirt, I began advocating for the participants.  Not only were my warnings about the way participants were being treated dismissed, I would later learn Mccooey was calling DOH officials and others saying, Something’s wrong with Peter, something’s wrong with Peter, laying the groundwork for pushing me out because having an advocate around was no longer convenient for him. Never mind the way program participants were being treated.

Over the years I have met some amazing people too.

Judy Sandman, recently retired from the Brain Injury Association of New York State, was and is as committed to people with brain injuries as any human being on God’s green earth. Bruce Darling, the head of the Center for Disability Rights, is one of the most dazzlingly committed to equal rights human beings I’ve ever had the privilege to meet. Judy Purdell, a social worker who is a counselor for people living with brain injuries is the very essence of compassion, honesty and integrity. The same can be said for Dr. Maria Lifrak and her staff at Comprehensive Neuropsychological Services. Dr. Lifrak is  a neuropsychologist who, along with her staff and a former employee of hers, Kristen Weller, taught me more about the role my brain injury plays in my life than all others combined. 

Well, enough for now, there will be more to come about my days in health care.

We Are Not Children, the Assault on CDR & Fighting Segregation

I must’ve forgot to read the paper or watch the news  that day.  What day, you ask? The day the universe decided that if an adult has a disability he or she reverts to age three and, on top of that, morphs into a liar and because of this, forfeits their rights be treated with respect. Not surprisingly, the loss of respect translates into another loss, our rights, including our right to live in the most integrated setting.

One again, people are fighting against segregation and the dehumanization of people – like me – who live with a disability.

Right now, for instance, people with disabilities are under assault in Monroe County New York because a county executive named Maggie Brooks issued a rather sleazy and disingenuous directive that ends a contract with the prestigious non-profit Center for Disability Rights and, as a result, creates carnage in the lives of people with disabilities and, coincidentally (not!), looks to add money to the coffers of for-profit companies.

On the individual and community fronts, people with disabilities are almost habitually treated as if they are dishonest little children who barely have the right to call themselves human beings.

The assault on our right to respect and equality is both global and individual. As the several thousand regular readers of this blog know, I have to move to a new home. There is a subsidy in place that helps me with rent. It will transfer to my new home (once it is found) but, were there to be a gap between my leaving this home and finding a new one, I would not be able to retain the subsidy. Recently my current landlord called me to tell me someone from the New York State Department of Health had called them to ask when I was moving.

First, the person from the DOH does not have a signed release from me and may well have violated the HIPPA law by talking to my landlord in the first place. Second, I am being treated as if I am a liar. Not good. This incident with me is simply a small appendage of the kind of abuse people with disabilities in this country endure day in and day out.

We are all responsible for supporting each others equal rights. I would urge you to visit the CDR site and do all you can to support them. By supporting their rights, you support your own.

Oh, it should not surprise you to learn I’ve filed a complaint in response to the call made to my landlord. However, it would be both wrong and highly inaccurate to condemn the NY DOH as a whole for the actions of one person. There are some remarkably wonderful and dedicated people in the DOH.