Category Archives: CDR

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.

 

Choosing Change

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There is nothing unique in saying change can be scary. It often is. Even when you choose it as I did recently when I resigned from the New York State Council on Independent Living, as remarkable a group of people as I’ve ever worked with.

The heartfelt commitment I witnessed in council members to the rights of people with disabilities to live independently, which means as equal citizens, is breathtaking. I hesitate to mention certain members because all deserve to be mentioned, but I’m going to do so anyway. The two who dazzled me most were and are Bruce Darling and Brad Williams, the former being the head of the remarkable Center for Disability Rights  and the latter being the executive director of NYSILC.

I resigned from the council for three reasons: it is time to focus on my writing, my stamina level is not what it once was, and, at age 57, I don’t know how many years I have left. There are books I am writing and want to write along with short stories, blog essays, and, well, anything else that strikes my fancy. I need to finish a memoir, I task I’ve let lag far too along with two novels and a non-fiction work about working in the field of disability, brain injury specifically, a book I’m calling It’s All About Respect.

Do I find the change I’ve chosen scary? You betcha. But there is an expression about fear I wrote some years back that I love: It’s okay to be afraid, don’t let it scare you. If we wait until the fear leaves before we make the changes we want, they’ll never get made.

Henry David Thoreau’s line was a great help to me in summoning the moxie to make this change. “Go confidently in the directions of your dreams! Live the life you’ve imagined.” This goes for you too.

Days in Brain Injury Health Care – Part I

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“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

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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.

Independent Living: The 2010 SILC Congress

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We have come to this room from every state and territory in the United States of America. When I hear a voice from every state and territory call out in response to a roll call vote, my eyes wet up. It takes my breath away. I am one of those representing the New York State Independent Living Council at the 2010 SILC Congress. This large ballroom is filled primarily with people like me. People with disabilities who are steadfast in their commitment to make sure all people with disabilities are afforded their equal rights, which, by the way, includes independence.

The key words? Independent Living. The phrase describing independent living on one website reads, “Independent Living is the right of all people to make informed choices, to have personal control over their own lives, and to participate to the fullest extent possible in the everyday activities of work, school, home, family and community.”

When I think of my experience and the experiences I’ve seen other people with disabilities endure, the right to independent living is denied on many fronts. In other words, the struggle for independence continues, and in my country and all country’s for that matter, the very fact people are not treated as equals is morally, emotionally, socially and politically inexcusable.

In my country, for example, some folks with disabilities work in what are called sheltered workshops where they are paid well below minimum wage. Never mind that their labor makes money for the companies hosting the workshops and the companies who contract to have their goods manufactured in the workshops. Is there some reason this is not slave labor?

The annual SILC Congress (the first was in 1998) is when every state and territory in the union sends representatives from its SILC. SILCs were established under Title VII of the 1973 Rehabilitation Act and “are state appointed councils which coordinate the functions related to the planning, monitoring and evaluation of the SPIL (State Plan for Independent Living)”. Among other things, SILCs play a role in the development and drafting of disability legislation as well as promoting research projects and gathering polling data.

The New York SILC’s website also explains that SILCs are “responsible for the development, implementation and monitoring of the 3-year Statewide Plan for Independent Living (SPIL)” and, in New York’s case, “The council is jointly responsible for the SPIL with its state plan partners: New York State Education Department/Office of Vocational and Educational Services for Individuals with Disabilities (VESID) and the Office of Children and Family Services/Commission for the Blind and Visually Handicapped CBVH).”

As I sit in this room and watch and listen to my colleagues from around the country, I am at a table with three truly remarkable people from my state: Brad Williams, executive director of NYSILC, Denise Figueroa, a member of NYSILC and the executive director of the Independent Living Center of the Hudson Valley in Troy and Bruce Darling, vice-chair of NYSILC and co-founder and President/Chief Executive Officer of the Center for Disability Rights (CDR) in Rochester.

I meet other remarkable people: Tony DiRienzi, a Philadelphia native who is now executive director of the Arizona SILC, Tom Masseau, government and media relations director for the Protection and Advocacy Service in Michigan, Bill Gorman, executive director of the Illinois SILC, Santina Muha from the Maryland SILC and the National Spinal Cord Injury Association and others.

All these people along with all the people in this room are powerful reminders that you don’t have to stand up to stand tall, you don’t need sight to have vision in life, and you don’t need hearing to know the sounds of injustice. You also don’t need to be disability free to be deserving of equality, independence, and your right to independent living.