Category Archives: traumatic brain injury

More on compassion, love & advocacy

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Three very thoughtful comments in response to the last blog post,  Anger, compassion, love, advocacy & BIANYS,  along with some equally thoughtful emails and phone conversations have helped me recognize it would be wise for me to write more about what one reader accurately summed up: “Your recent blog piece sounds like you are reviewing your advocacy tactics.” It’s true. I am and always try to with varying degrees of success.

All of us are wise to keep track of the patterns we find ourselves in. Sometimes it takes those close to us to point them out, and if we are centered enough, we can try on these observations and change accordingly without falling into the trap of clinging to old habits. John Steinbeck once wrote, “We are creatures of habit, a very senseless species.” How true.

I want to comment a bit on some of what I’ve read and heard in response to the last blog piece. But first  we must stipulate to the fact that the very act of holding people and organizations accountable may upset people. I can’t do anything about this. What I can do is advocate with intensity and tenacity and honesty and do my level best not to make anything sound personal. But, if leaders of various groups, government agencies, and others blatantly ignore those they claim to serve, I am going to say so. If organizations do not do what they tell people they do, I am going to say so. I have no other choice. One thing is very clear, things can’t go along business as usual when it comes to the realities currently being faced not just by brain-injured New Yorkers but by all people with disabilities in this state and beyond.

What I must pay close attention to is my contribution to the push for change. People in leadership positions must recognize and, in their choices, live the following reality: the Kahrmann Advocacy Coalition is not about Peter Kahrmann any more than the Brain Injury Association of NY State is about Judy Avner or Marie Cavallo, or the Traumatic Brain Injury Services Coordinating Council is about Michael Kaplen and Judy Avner. These groups are about and only about the people they are there to serve. And if any of us – including me! – gets too it’s-all-about-me, people around us need to call our attention to this and we need to listen and change accordingly.

Some things are not personal. It is not a personal attack for me to point out that Michael Kaplen and Judy Avner are sitting on a council even though their terms expired seven and eight years ago respectively. There is something not right about this and it needs to be addressed and I would point out this truth gives them the opportunity  to do what anyone – including me – in leadership positions must do – and that is recognize when we’ve fumbled or gone wrong and do the right thing. There is nothing personal about my pointing out that the council, certainly under Kaplen’s chairmanship, has failed to do pretty much of anything it was designed to do, and this is something he needs to reflect on, step down, and let others take the lead.  Upon hearing that George Washington stepped down after his second presidential term, King George of England said, “If Washington gave up power he is the greatest man on earth.”

Now, to the comments.

One person wrote in a beautiful statement about Marie Cavallo and I could not agree more. Marie has very much given and continues to give her heart and soul to the cause of brain-injured New Yorkers. It is true too that she is in a position where speaking what she really thinks is politically risky, and here is where, like me, she may want to do some reflection; is the “forced” silence worth the position? Only she can decide that. I love her no matter what she does, and I can say the same about Judy.

Another person wrote, in part, about the importance of establishing partnerships; they too are right. It is important (I am quite sure my correspondent knows this) that groups who form partnerships understand they are partnerships, meaning one group can’t simply say to another; you must accept everything about us as is, especially when some of the as is hinders or impedes equal rights for brain-injured New Yorkers.

Another person wrote in pointing out that BIANYS  is no longer the answering component for the complaint line, now the regional representatives for DOH will do that. Two things: this change does not change the fact complainants never get the results of their complaints and perhaps now BIANYS will be able to openly advocate that they do.

We are all works in progress – including me.

We Are Not Cottage Industries

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A few years ago I was talking with a woman whose husband suffered a brain injury. She said, “The moment he got his disability he became a cottage industry.”  While the definition of a cottage industry involves work done at home, the point she was making was and is spot-on accurate. People with disabilities are often seen as a way of making money.

As those of you who are regular readers this blog know, I live with a brain injury and have worked in the field for 15 years, for the most part in the arena of New York’s Traumatic Brain Injury Waiver, a welcome form of Medicaid reimbursement that funds services designed to help survivors of brain injury remain in the community and grow their independence.  Companies and individuals who provide waiver services run from the gamut, from superbs to slugs. The superbs are those who really work to help someone grow his or her independence which results in their actually needing less services over time. The slugs are those who pile on as many services as possible, often more than any person, brain injured or not, can handle, or, for that matter, needs. The slugs do all they can to keep survivors in their program and have no intention whatsoever of helping them increase their independence.  I call it community-based warehousing.

A perfect example of a slug provider at work was an example cited in an April blog post.

“I know someone who lived with a brain injury. She is extremely bright and nobody’s fool. Were she in a coma she could likely outwit 99 percent of the people I know. Anyway, she was attending a day program and made it known she wanted to get a part time job. So the program tells this woman that they will clear out a little office space they have and set it up with candy and soda so she can sell the items a few hours a week and she can keep some of the money. This woman said to me, “Do they think I’m stupid or what? Do they think I don’t know that the only reason they’re offering this is so they can bill for the hours I’m in selling their damned candy?” In other words, all this Albany-based provider cared about was not losing the money they would lose if this woman had a part time job in the, wait for it, community!”

This same provider enlisted some in their program to clean their offices, paid them a pittance, and reported them as people that had successfully returned to the workforce. Oh, the program billed Medicaid for the time the survivors were cleaning their offices. Bill trumps humanity on too many fronts.

We are not cottage industries, we are human beings.

There are some extraordinary providers who know this. Cortland Community Re-Entry Program in Cortland is wonderful, Living Resources in the Albany area is too, and  so is the Long Island-based program, RES. They know we are not cottage industries and they also know something else too. By providing high quality services, people with brain injuries grow their independence, the word gets out, and more people want to go to their programs.

If you are inclined to blame the current state of affairs solely on the New York State Department of Health, don’t. Like most state agencies,  in my view, they are, through no fault of their own, understaffed and overworked. It is not easy for them to send out the number of survey teams they’d like to in order to take the slugs to task and praise the superbs.

The responsibility of making a slug a superb falls on all our shoulders. The dysfunction of dehumanization needs to be brought into the light. If you are someone who knows of this type of dysfunction and you are unsure of what to do with it, or you are scared of what might happen if you do act, drop me a line.

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Thoughts on New York TBI Waiver

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One of the primary challenges faced by New York State’s Traumatic Brain Injury Waiver is a lack of understanding of the brain exhibited by the majority of those provider services to those of us who live with brain injury and by those saddled with designing and implementing the waiver in the first place. There are also those who provide services to those of us who live with brain injuries whose sole purpose is to keep us dependent on them so they can rake in the dough.

The waiver is a Medicaid program that began in 1995 that pays for services designed to keep people living in the community. It’s stated purpose is both honorable and needed. However, its design and implementation  has its problems. It is reasonable to expect this with  any relatively new program but the waiver is fifteen years old now and should be in better shape than it is. For example,  providers ought to receive reimbursement for staff training directly related to brain injury. Right now this kind of staff training puts an unfair strain on provider coiffures.

It must be acknowledged at the outset of this missive that there is much that is positive about the waiver, primarily the fact that its very existence afford some who live with brain injuries to live in the community as opposed to be warehoused in institutions. The problem though is that a number of those who provide services under the waiver make choices that appear to be more driven by the desire to keep someone on the waiver rather than help them reach their maximum level of independence. In other words, an unhealthy form or profit motive coupled, in some cases by the dysfunctional and cruel desire to control others, defeats the very purpose of the waiver in the first place, and in some specific cases, ought to result in criminal charges given that  indentured servitude (and slavery) is against the law.

It seems to me that the way to approach the challenge of improving the state’s waiver is to not come into the process pointing fingers. You come into the process steadfast and tenacious in your commitment to get the bow of the ship, so to speak, headed in the right direction. There are many on all fronts: advocacy, family, survivors, department of health officials, a providers who are committee to doing the right thing. They must be joined in their commitment to this. However, the must be equally joined in exposing any person, process, agency or official who is part of the problem.

Those who are part of the problem need to be exposed and dealt with.

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Living With A Brain Injury – April 2010

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No brain injury is the same no matter its cause and a brain injury is never a static thing. It’s role in your life changes and shifts for a range of reasons. It is one experience when you are rested and, in all likelihood, another experience when you are tired. In a state of fatigue the brain is not as able to compensate for the damage. Aging too impacts the role the injury plays.

As one who lives with a brain injury my responsibility  is to keep an eye on its role in my life and do my best to manage it. My injury is a result of being held up and shot in the head in 1984. There is one immoveable truth that stands tall in the face of this or any disability or disease for that matter. They d0 not define who we are unless we allow them too and the most certainly do not define our value in life.

My closest friend, Michael Sulsona, lost his legs in Vietnam and another good friend of mine, Jim Cesario, suffered a spinal cord injury. Both men use wheelchairs. Both also deal with people talking to them in very loud voices because for some odd reason people think if you use a wheelchair you’ve suffered hearing loss. Go figure. Both men, by the way, stand way taller in life than most people I know.

No matter the wounds of life,  you are not gone.

It seems to me one of the keys to improving quality of life is acceptance, your capacity to accept the reality that is you. This requires honesty. For me, I’ve accepted I am an alcoholic (I will be eight years sober this July 12) and I have accepted that a brain injury and PTSD are present in my life. By accepting the realities you face for what they are, you stay right sized and by keeping them right sized you do not lose you in the process.  That to me is the greatest discovery of all. No matter the wounds of life,  you are not gone.

There are still days my fear and anxiety stop me from getting out of the house, or drive me out of my backyard and back into the house, but even so, I am more than okay. On those days I am by no means a defeated being. I am surrounded by books and the house is filled with music and, of course, the bird feeders are filled with wondrous visitors.

Your most powerful weapon

No matter what you are facing in life, you are not gone. I can tell you too that honesty, which is the core fuel for one’s capacity to accept, is your most powerful weapon.

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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