Category Archives: Brain Injury Association

Silence from New York’s DOH

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A letter to a DOH official asking her to investigate how several million dollars of state taxpayer money has been paid to a project run by New York State contract employee Timothy J. Feeney who does not have the credentials he says he has has been met with silence.

A July 25 letter to Patricia Greene Gumson of the New York State Department Health has gotten no response. The letter, copied to others in and out of the DOH, asked Ms. Gumson to investigate how it was that Timothy J. Feeney received three five-year contracts with the DOH despite the fact he misrepresented his credentials. Was there a vetting process and, if so, what was it? It is critically important for the readers of this blog to avoid villainizing the DOH as a whole. There are quite a few honorable people working there and straightening things out while dealing with the ineffable web of bureaucracy is no easy task.

However, Mr. Feeney himself indicates that some in the DOH knew about the problems with his credentials. According to unsolicited e-mail this year to readers of my blog, some in the DOH knew Mr. Feeney did not have the college degrees he claims to have. In his e-mail, Mr. Feeney said, “The Department of Health, the state office responsible for the Neurobehavioral Resource Project, is well aware of my educational history, the source of my (college) degrees.”

For nearly 15 years now Mr. Feeney has headed up the Neurobehavioral Resource Project for New York State’s Traumatic Brain Injury Waiver. The Project is arguably the most powerful influence on the waiver across the state. There can be no argument  that the TBI Waiver is a blessing to the state and desperately needed as it affords many with brain injuries to live in the community. However, there can also be no argument that survivors of brain injury, their families and other loved ones, along with the hard working companies that provide waiver services across the state have a right to expect people to be who they say they are.

As readers of this blog already know, Mr. Feeney claims to have a PhD and Masters degree when he has neither one. The letter also asked Ms. Gumson to look into how it was that none of the three contracts that some might see as jerry-rigged didn’t require the person heading up the Neurobehavioral Project to even have a master’s degree.

In short, Mr. Feeney’s degrees were received from Greenwich University, a diploma mill located in Hawaii and California in the 1990s before moving its operation to Norfolk Island off the coast of Australia. Degrees from Greenwich have never been recognized as valid in the Australian mainland and have never been recognized as valid anywhere in the United States of America. Greenwich, not to be confused with the prestigious University of Greenwich in England, closed its doors in 2003.

Brain injury survivors, the families and other loved ones as well as waiver providers across the state deserve answers. Here are some but not all the questions that ought to be answered.

How productive has the Neurobehavioral Project been?

  • Are referrals to the project responded to, completed, and followed up in a timely manner?
  • How many admission holds were placed on Waiver Providers across the state at the direction of Mr. Feeney? 
  • How many survivors were tossed off the waiver by Mr. Feeney?
  • What has Mr. Feeney and the Project’s impact been on Medicaid dollars?
  • How many Medicaid dollars were spent based on the reasonable belief that Mr. Feeney was Dr. Feeney?
  • Would any Medicaid dollars been saved had Mr. Feeney not represented himself as Dr. Feeney?

Another letter to a DOH official way up the ladder is on its way and has been copied to a wide range of people. I have faith that the DOH will do the right thing. Mr. Feeney’s contract expires the 30th of this month. Were it to be renewed, or were some maneuver like awarding the contract to a company who would then hand leadership over to Mr. Feeney to happen, more folks would need to be taken to task.

It is hard enough living life with a brain injury, it is hard enough adjusting to the reality that a loved one has a brain injury, and it is no easy task providing quality services to those who live with a brain injury for providers who try to keep their companies afloat despite low reimbursement rates. To manage all these challenges only to find out one of the most influential entities in the state is not who they say they are is not only unjust, it’s immoral.

Living With Brain Injury – Part V: Where Are the Employees?

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It would be interesting to learn how many people living with brain injuries are in management positions  in the companies providing services to people with brain injuries living in the community. Not many. I can think of one provider that has an individual with a brain injury in a management slot.

The last company I was affiliated with was the Belvedere Brain Injury Program in Albany, New York, and, sadly, in Syracuse too. In the end, not a pleasant experience. Once their substance abuse program got underway and a plethora of survivors began to complain they were being denied their right to choice, I began advocating for them. I was soon told to leave.  I have no reason to believe conditions have changed and  no one running the show  has a brain injury. But this affront aside, the larger picture begs the question, how many people with brain injuries are in management positions in companies like Belvedere? Given that the answer is hardly any, the next question is,Why not?

Is one of the reasons why not may be that many still cling to the belief that those who live with brain injuries can’t do the work? Not so. Bob Woodruff, as good and decent a man as God ever created, lives with a brain injury and is back at ABC News dazzling in his work as always. Is another reason that some companies know that someone with a brain injury might not take kindly to the way survivors are treated by the company?  It’s kind of like creating a group of companies to provide services for veterans and not having any veterans on staff.

Keep in mind, there is such a thing as warehousing in some community-based programs.

Wouldn’t you think that any company providing services to people living with brain injuries would work hard to  get  people with brain injuries on staff because, deep breath now, they might be well suited to tell you what it is like living with a brain injury and thus help you design a more effective program?

Perhaps I’m not the one to ask. After all, I have a brain injury.

LIVING WITH THE BRAIN INJURY GHOST

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Living with a brain injury is so hard sometimes it breaks my heart. I wrote those words to a friend of mine recently and as soon as I wrote them I knew this essay had finally begun. I’ve tried and failed to write it many times before. Writing about life with a brain injury is like trying to paint something in constant motion. It is nearly impossible. The brain injury never, and I mean never, stays still. Living with a brain injury is like living with a ghost.

I suffered my brain injury in 1984 when I was held-up on the streets of Brooklyn and shot in the head at point blank range. While doctors left the bullet in my brain because removing it would have resulted in more brain damage, no one told me I had a brain injury. I never heard the words traumatic brain injury, or TBI, the injury considered the signature injury of the current wars. The basic gist was this: No, Peter, you can’t play contact sports anymore and we are going to put you on anti-seizure medication for at least one year as a precautionary measure.

It would be 10 years before I learned I was living with brain damage, that the brain damage was impacting and damaging my life and, as a result, some of the people in my life.

If you think my story is unique, think again. Tragically, I am not alone. The brain injury epidemic in this country has been going on for a long time. More than 50,000 Americans die from them every year, including 7,000 children. More than five million Americans live with disabilities as a result of them and nearly 1.5 million Americans sustain brain injuries annually. Every 23 seconds an American suffers a brain injury. The Brain Injury Association of America reports that “(d)irect medical costs and indirect costs such as lost productivity of TBI totaled an estimated $56.3 billion in the United States in 1995.”

The brain injury ghost lurks everywhere and, as I imagine ghosts to be as rule, it can be highly unpredictable. It can be influencing your life experience and you don’t even know it. It can permeate light, sound, fatigue, anger, sadness, pressure, hunger, thought, perception, darkness, touch, balance, speech, memory, movement, coordination – in other words – everything and anything that you are.

Why is this so? Because your brain is your life manager. It is the filter through which you and I experience life. No doubt some will read this and say I am leaving God and spirituality out of the mix. Not so. It is through this miraculous life manager that we are able to experience God and spirituality in the first place.

But, like poltergeists, brain injuries can be mischievous, controlling, sneaky, dishonest, cruel, misleading and so forth. They can be so insidious at times that it may take you awhile to realize, if, in fact, you ever do realize, that they’ve been running the show and wrecking your daily life and, in many cases, the daily lives of others. Very often the people you like and love most. These ghosts can vandalize our daily life. They can be scary.

Yet despite these harsh realities, far too many who say they want to help and support those of us living with brain injuries have little if any idea of what it is like to live with one. In some instances, they are so predisposed to certain views, beliefs and motivations that they will never have any idea what it is like to live with brain damage.

In some, I would like to think, rare instances, the inability to understand is rooted in the fact they simply don’t care. We brain injury survivors are seen as a way of making money. Some health care providers are more about gutting and manipulating an already pitiful and unforgivable health care system than they are helping survivors ascend to their maximum level of independence.

Some in Washington and across the country squawk about the Canadian and French health care systems. They complain these systems are socialized medicine. They hope we will hear the word socialize, convert it to the word socialism, convert that word into the word communism, think them synonyms, and recoil in horror. Spare me.

Here’s how I see it. Everyone has health care coverage in Canada and like minded countries and no where near everyone has health care coverage in my country. When you are sick or injured you want health care. When you’re bleeding profusely in an emergency room you don’t give a rat’s ass whether your health care is socialized or managed care; you want the health care. In fact, you deserve it.

THE AMERICAN BRAIN INJURY EPIDEMIC

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As a brain injury survivor and one who works with brain injury survivors I am saddened but not surprised that a leading expert in forensic pathology says former National Football League player Andre Waters’s November 2006 suicide was likely tied to brain damage suffered by Mr. Waters over his playing career.

The New York Times today said forensics expert Dr. Bennet Omalu of the University of Pittsburgh “determined that (Andre) Waters’s brain tissue had degenerated into that of an 85-year-old man with similar characteristics as those of early-stage Alzheimer’s and that if he had lived, within 10 or 15 years “Andre Waters would have been fully incapacitated.””

There is an epidemic of brain injuries in the United States and we, as a people, are playing catch-up. In some quarters we are waging the catch-up battle valiantly, but we have a long way to go.

I sustained my brain injury in 1984 when I was held up and shot in the head at point blank range. While I received extraordinary medical care, no one, and I mean no one, mentioned the words brain injury or brain damage to me. And so I left the hospital with a bullet in my frontal lobe, bone spray in my left temporal lobe, and a sharp awareness that I would be wise to avoid contact sports.

It would be nearly 10 years before I learned that the damage to my brain impacted my daily life in a very real way. I am far from alone and not even in the same room with unique on this front. Millions of Americans deal with brain injuries. Think this is an overstatement? Try these facts on for size.

– With more than 50,000 Americans dying every year from brain injuries, it is safe to say more than 1 million Americans have died in the 22 years since I was injured, including more than 150,000 children.
– 1.4 million Americans sustain brain injuries annually.
– In 1995, direct medical costs coupled with lost production cost the United States an estimated $56.3 billion.
– Many members of the American military wounded in Iraq and Afghanistan have suffered brain injuries.

If you think only football players or those in contact sports run the risk of injuries like those suffered by Mr. Waters, you are sadly mistaken. A couple of years ago I went to a conference on brain injury at Mount Sinai School of Medicine in New York City. A forensics expert showed that if you have someone lie down on their back, lift their head 12 inches off the ground, and let go, the skull is travelling 40 miles per hour when it strikes the surface.

We are not quite holding our own in this catch-up battle. There was, after all, no brain injury association on the national level until 1980. Now we have the Brain Injury Association of America, a wonderful organization. States have their respective brain injury associations, all deserving of their citizens support. I am a member and board member of the Brain Injury Association of New York.

Unlike cuts and bruises and broken bones, brain injuries do not heal. Yet the reluctance of so many to take simple precautions is mind boggling. I have seen the following scene too many times. A family is on a bicycle ride. The children are dutifully wearing their helmets (sometimes) while the parents are not wearing their helmets. Perhaps the parents think that adulthood means they are no longer beholden to the law of gravity. Or, perhaps, there is a bit of vanity at work, some concern that one’s hairstyle will get messed, or, some “real man” doesn’t wear a helmet because he is , well, a “real man”. Dazzling displays of reasoning for sure. Tell you what though, when you’re paralyzed and/or you can’t remember what happened five minutes ago, remind me to ask you who your hair stylist is, or what it’s like to be a “real man.” But then again, why should I bother? You won’t remember anyway.

If you are from New York State, you can contact the Brain Injury Association of New York, the one I belong to at http://www.bianys.org/

Contact the Brain Injury Association of America for information on a Brain Injury Association near you. Please visit their website at http://www.biausa.org/