Tag Archives: TBI

Update on NY’s TBI Waiver

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The New York State Department of Health is looking for a not-for-profit entity to serve as the state’s neurobehavioral resource project. At least $400,000 in state tax dollars is available for the first year of the upcoming contract. The current neurobehavioral project has been headed for the past 15 years by Timothy J. Feeney who, as this blog as reported, who misrepresented and continues to misrepresent his credentials.

Mr. Feeney’s contract expires December 30 of this year. The concern now for survivors of brain injury like myself, along with health care providers and family members, advocates and others, is what standards will the DOH set this time and will the DOH be sure to vet those who contract with the state to provide support and services to people who live with brain injuries.

While the Feeney era may appear to be over, it ain’t over until it’s over, as the delightful Yogi Berra says.

The following is the standards the NY DOH is seeking for the director of the neurobehavioral project. While there seems to be an increase in standards, it concerns me that the qualifications being sought are absent any real clinical background in brain injury. In other words, one would have hoped a neuropsychologist or neurologist would be sought. You can review the grant funding application request in its entirety at:

http://www.health.state.ny.us/funding/rfa/0908031109/0908031109.pdf

To be qualified to be the Project Director, the individual should possess substantial clinical experience with persons with a TBI and/or a neurobehavioral disorder in community based settings. Project Director must have one of the following credentials:
(A)
A license and current registration to practice medicine in New York, and board eligibility or board certification in psychiatry with three (3) years of experience providing behavioral services; or
(B)
A license and current registration to practice psychology in New York State, and three (3) years of experience in providing behavioral services or traumatic brain injury services; or
(C)
Master of Social Work, Doctorate or Master degree in Psychology, Registered Physical Therapist (licensed by NYS Education Department pursuant to Article 136 of the NYS Education Law), Mental Health Practitioner (licensed by NYS Education Department pursuant to Article 163 of the NYS Education Law), Registered Professional Nurse (licensed by the NYS Education Department pursuant to Article 139 of the NYS Education Law), Certified Special Education Teacher (certified by the NYS

Education Department), Certified Rehabilitation Counselor (certified as a Certified Rehabilitation Counselor by the Commission on Rehabilitation Counselor Certification), Licensed Speech Language Pathologist (licensed by the NYS Education Department pursuant to Article 159 of the NYS Education Law), or Registered Occupational Therapist (licensed by the NYS Education Department pursuant to Article 156 of the NYS Education Law), and a minimum five (5) years of experience providing neurobehavioral services.

If you have suggestions or comments or concerns, please let this blog know, and don’t hesitate to contact:

Charlotte Mason

NYS Department of Health Office of Long Term Care Division of Home and Community-Based Services Bureau of Medicaid Waivers

99 Washington Avenue, Suite 826

Albany, New York 12210

Attn: Brenda Rossman
E-Mail: tbi@health.state.ny.us

25 Years Later

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Tomorrow marks the 25th anniversary of the day two teenager held me up on a Brooklyn street. One put a gun to my head and fired. He and his accomplice, who was rifling through my pockets when the trigger was pulled, got $63 for their efforts. The bullet is still lodged in the brain and I take great pleasure in feigning disappointment that I do not set off  airport alarms (if you were hoping for a humor free essay you might as well stop reading now).

To this day there are occasions when, upon hearing about the shooting, a person will lean forward, their brow furrowed a bit, and say things like,  "Did it change you?", or, "Is life different?" or, "Do you understand life in a way you didn’t before?" Honest questions all, but I always get the impression that the asker believes being part of an extraordinary act of violence automatically results in a deeper understanding of life. It doesn’t. At least I don’t think it does.

The experience did give me a new appreciation for the importance of ducking. It certainly increased my awareness of the human capacity for cruelty. And, it has helped me to remember to live, not miss the moment I’m in,  and not miss the chance to tell people I love that I love them.

Much has changed in the last 25 years and there is nothing unique in that. Some wonderful things in life have happened as a result of the shooting. I have been given the gift of being able to work with survivors of brain injury, their families and people in the health care field.

The health care field itself exposes you to wonderful people and to people who have a capacity for cruelty that outdoes the cruelty of shooting an innocent person in the head. Health care providers who see and treat people with disabilities as sub-human beings that are on this earth so they can make a profit ought to be jailed. I know one owner of a community-based program who has run clinical meetings for people in the program and doesn’t have one iota of training as a clinician, yet his ego is so distorted and the lack of regulations so prominent, he gets away with it, to the detriment of those receiving services in the program. I know another director of a brain injury program who told the wife of a brain injury survivor, with her husband present, that there needed to be a funeral for her husband because he no longer exists and she and her husband needed to allow this director and his team of sycophants to re-create him. By comparison, the kid who shot me was simply having a bad day.

There is another thing the shooting gave me. An appreciation for having a bucket list, though it wasn’t until the movie came out that I became aware of the term bucket list. I was, however, aware of experiences I wanted  and want to have before my time is up. I want to meet Bruce Springsteen and thank him for the role his songs had in helping me stay alive during some dark times. I’d like to visit the Grand Canyon and spend a week or more exploring the canyon itself. I want to stand in a room that Beethoven was in, and in a room Tolstoy was in, and in a room Dickens was in. I’d even like to get married again some day, really share life with a soul mate. I’d like my daughter and I to have a relationship again before time’s up.  And, of course, I want to write and write and write. The list goes on.

One other thing, I’d like to thank God with all my heart and soul that I am alive 25 years later to even have a bucket list,  and write this essay for you.

 

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.

We Are Not Children, We Are Not Slaves: Living With a Brain Injury – Part II

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It would be understandable but inaccurate to blame the New York State Department of Health for the existence of problematic companies that provide services under the state’s Traumatic Brain Injury Waiver. The DOH does not have unlimited resources in staff or funding.  Over the years I’ve had largely positive experiences with the DOH. There are people there who care deeply about those who live with brain injuries. I do not for a second envy the unwieldy and baffling bureaucracy they are asked to negotiate daily.

Historically, the waiver is new. It only came about here in 1995 and 14 years in existence does not a perfect program make. I think all would agree the waiver is a work in progress and so it should be, always. I think the DOH understands this and I applaud them for their efforts. Yes, there are issues and problems, but is this not the case with all new things?

One of the tools the DOH does not have – but deserves – is enough people to thoroughly survey and expect the companies that provide waiver services. Again, this is not because the DOH does not want to keep track of things. Budget realities and  skewed priorities (not of the DOH waiver staff’s making) get in the way. Moreover, the reimbursement rates the companies are paid for providing waivers services are so low they would be laughable were the results not so tragic. And the tragedy  on this front is at least twofold. Because of the low reimbursement rates these companies are hard pressed to stay afloat (some do not), and those of us who live with brain injury are saddled with so many hours of programming every week  fatigue takes over and puts us at risk in a very real way.

Consider this for a moment. When the brain is damaged, no matter the cause, there is now less brain doing the work. It’s as if you had a car with a six-cylinder engine and one of the cylinders blows out leaving the engine operating on five cylinders. The car still runs, but the engine is working harder. And so it is with brain injury. We still function but our brains are working harder, so fatigue is a major, major problem. When some of these companies pile on the hours of programming, the toll it takes on those of us with injuries is brutal.

Some companies load up on programming hours because they honestly,  but mistakenly, feel it is effective, others load up on  programming hours because they are all about making money and only see those of us with brain injuries as a way of doing just that. The hell with the damage it does. There’s plenty of us to go around. Keep in mind,  something like 1.5 million Americans suffer a brain injury every year.

– to be continued

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.