Tag Archives: traumatic brain injury

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

Charles Dickens & Disability Rights

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I have come to believe disability is in the eyes of the beholder. In fact, the inability or unwillingness to grant someone their humanity because of a challenge they face on the physical or cognitive front is the biggest disability of all; it is the very disability that denies people their freedom.

For some time now I have wondered how best to reveal the dehumanizing treatment people with so-called disabilities often endure. I say so-called because those who do not see the humanity of others are the most disabled of us all.

I have both seen and heard so many examples of dehumanizing and humiliating treatment it’s hard to know where to begin. I know of one instance where a director of a brain injury program in my state told the wife of a brain injury survivor, who was sitting right there listening to this, that a formal funeral needed to be conducted for him because he no longer existed and that his wife needed to allow this program director and his team to recreate him. The director added that it would be a good idea for her husband to attend.

I know of another program where a workshop facilitator with the compassion level of Mussolini locks the doors to the room when a workshop begins and berates those who may need to use the bathroom for not having gone before the workshop. Moreover, he denies people admittance to the workshop if they are late. I have personally heard this “Mussolini” in action, bellowing down a public hallway to survivors, “Okay now, let’s get moving, workshop time. Lets get moving, kids!” Keep in mind he was talking to about four or five adults, one of whom was a squad leader during the Vietnam War. When “Mussolini’s” behavior was brought to the attention of the little dandy of a company owner, he said something to the effect of, Oh my, that just can’t be possible. I’ll look into it, which means, of course, that he won’t do anything of the sort.

So, my point is, it is easy to give you examples that will, if there is a heart beating in your breast, break your heart and turn your stomach.

But it was a sentence from an extraordinary two volume biography of Charles Dickens by Edgar Johnson that opened my eyes to what may be the best way of telling this story. Dickens himself lived a brutally rough childhood. His family was sent to debtors prison and Dickens, his hopes of becoming an educated gentlemen being, in his youthful mind, forever lost, found himself working in a blacking factory. All his life Dickens wrote with a keen awareness of the brutal circumstances faced by the poor and the punitive way they were treated by society. It is still true in too many instances in my country and it is certainly true in the way people with so-called disabilities are treated.

But Dickens understood that revealing harsh realities by merely telling of the horror was not the most effective approach. Instead, Johnson writes, “it was Dickens’s aim not to turn the stomach but move the heart.” And so we have Oliver Twist and David Copperfield and many others who move our hearts.

And so I have determined, that here in this blog, and in a book that is beginning to make its way onto the page, I will try to move the heart. Yes, like Dickens, I will reveal the horror of things as I have done a bit in this essay. But, when the horror of a behavior is linked to a human being you care about, the “Mussolini’s” of the world are more likely to be overthrown, which is as it should be.

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

We Are Not Children, We Are Not Slaves: Living With a Brain Injury- Part I

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Discrimination denies people what they deserve – their freedom.

I have lived with a brain injury for nearly 20 years and have worked in the field for nearly 15 of those years. Raised in a civil rights family I am very much an advocate for every individual’s right to be who they are, in safety, with equality, in the world they live in. When I talk with survivors of brain injuries in this state and others, the number one complaint I hear is They treat us like we are children. Tragically this is true.

My injury was sustained when I was held-up and shot in the head at point blank range in 1984.

The dehumanization of people with brain injuries (of people with disabilities) is epidemic in scope. In too many instances those who live with brain injuries are treated by health care providers as chattel. Living things used to make money for the greedy. No matter how you hold this truth up to the light, it is a form of slavery: emotional, spiritual and physical slavery.

My state, New York State, offers what in common parlance here is referred to as the Medicaid Waiver. The waiver is a form of Medicaid reimbursement for healthcare providers who offer services to people with brain injuries who live in the community. While the lives of many brain injury survivors has improved as a result, the lives of many on the waiver have been turned into a form of community-based incarceration.

This is not a situation that calls for broad brush strokes. There are waiver providers in this state who, in my view, do an extraordinary job. The Cortland Community Re-Entry Program in Cortland and Living Resources in Albany are two superb providers. Others, like the Albany-based Belvedere Brain Injury Program is not even close to its website’s claim that it is “the Capital District’s leading traumatic brain injury community rehabilitation program”. An arrogant and unfounded claim if ever there was one.

to be cont’d