Tag Archives: TBI Waiver

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 Brain Injury – Part IV: Those Around Us

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When you face the challenge of a brain injury in life, there are several things you should be able to count, from those who love you and from those whose job it is to help you manage the injury: respect, equality, dignity, honesty and the best treatment available. What you do not deserve is disrespect, condescension, dehumanization, and dishonesty. Tragically, there is far too much of the latter.

Let me say at the outset that there a lot of things my state, New York, has right. It has a TBI (Traumatic Brain Injury) waiver, a form of medicaid reimbursement that provides services so some with brain injuries can live in the community and, in some instances, return to living in the community. There is no question that more people with brain injuries are living in the community as a result of the waiver.

However, there are problems, and while the problems might understandably call for finger pointing, finger pointing rarely gets us anywhere. The waiver is overseen by the New York State Department of Health. The TBI Waiver manual is a nice document, it says the person with the brain injury is the person who drives their treatment plan, or service plan as it is called in waiver parlance. Sometimes this happens, sometimes it does not. But the waiver is well thought out on this front.

What appears to be lacking in the waiver manual are regulations. There are guidelines for sure, but they are accompanied by a paucity of regulations, and that is troubling.

One thing I am sure of is this. For any therapeutic environment to be as effective as possible, it needs to be an emotionally, spiritually and physically safe place for the person getting the care. Key to this safety is, among other things, honesty. That the people who treat you or influence your treatment or the rules governing your treatment are who they say they are.

One problematic case that does call for finger pointing is the case of Timothy J. Feeney. Feeney has been a contract employee with the NY DOH for on or about 15 years and continues to refer to himself as Dr. Timothy J. Feeney when he is nothing of the sort. By his own admission, both his PhD and his Master’s Degree were obtained from Greenwich University, a non-accredited school that enriches countless diploma mill lists on and, I would imagine, off the web. On a resume of his provided to this writer by the state, Feeney openly lists Greenwich University. Greenwich U was a diploma mill that operated out of California and Hawaii until 1998 when it moved to Norfolk Island off the coast of Australia. It closed its doors and 2003. There is an Australian Government Alert available on the web that makes it clear Greenwich was not a recognized university in that country.

However, do not be quick to villainize the NY DOH in its entirety. Feeney’s contracts, also provided to this writer by the state, do not require he have any degree to head the neurobehavioral project for the DOH. One has to wonder who wrote the contracts? It is, I think, reasonable to assume that there are those in the DOH who are good and honest people who may inherited this hot potato.

The bottom line is this. Learning how to manage daily life when you live with a brain injury is hard enough. It becomes even harder when people aren’t honest with us. Any value they may actually have is entirely undermined once their dishonesty comes to light.

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

WORKING WITH BRAIN INJURY SURVIVORS – ESSAY #1

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Too many New York State health care providers who offer community-based services for those of us who live with brain injuries do not focus enough on the role the injuries play in our daily lives.

This neglect happens for a variety of reasons, some understandable, some not. However, the results of this neglect can be devastating for the survivor, their loved ones, and the caregivers themselves.

One can be sure the same problematic dynamic described here runs the risk of hindering services for the veterans returning home with brain injuries, or TBIs as they are more commonly called. TBI stands for Traumatic Brain Injury. I’ve often wondered if there is any other kind.

Before I go on here, let me say that Life Growth, something I teach, calls for the absence of judgment. Therefore, we must be careful not to judge anyone in this essay. While all of us are responsible for our choices, inflicting judgment on what is behind each others choices is, one, a waste of time, and two, often wrong, and three, makes the journey of dealing with the real challenge posed by brain injuries all the more difficult.

I have been in the field of brain injury for more than 13 years now and have lived with a brain injury since 1984 when I was held up and shot in the head. When it comes to getting your brain injured, trust me, that’ll do it.

My state of New York has the Traumatic Brain Injury Waiver, a form of Medicaid reimbursement for services provided to those survivors living in the community who qualify. While it has its imperfections, it is, in its design, an extraordinary start. Since the New York waiver only came into being in 1995, which historically puts us at the beginning of this journey, it is a terrific start.

One of the flaws though, which those in the New York State Department of Health would acknowledge (and it is not their fault at all), is the waiver does not cover all brain injury survivors in the state, only those who qualify for Medicaid and meet some additional criteria.

Before I get to the healthcare providers, I do want to offer a suggestion to New York’s DOH. Add a mandatory provision in the waiver that requires providers to draft a discharge plan with the survivor’s input as soon as they come onto the waiver.

There can be no doubt that the waiver already seeks to support survivors in the community with the least amount of services necessary; so the mindset of the waiver from jump street is to encourage independence. However, were discharge plans mandated from the beginning, the provider and the survivor would be consistently working towards complete independence from services, which will be possible for some and won’t be possible for others. However, it sets an appropriate tone.

Back to the healthcare providers who are, for the most part, a rather gallant lot. Working with survivors of brain injury living in the community is a new endeavor and so there will be honest mistakes. Nevertheless, we are wise to use all the information at hand in our work and here is where some providers fall tragically short.

The neuropsychological assessments for many survivors across the state often sit on shelves and accumulate dust from lack of use. Not using a survivor’s neuropsychological assessment when working a survivor is like trying to deal with broken bones without using x-rays.

Neuropsychological assessments can provide a real window into the daily realities and challenges faced by the survivors. They can help mightily in identifying the specific areas where the brain is injured and, as a result, provide a better understanding of any deficits in the cognitive realities the survivor copes. As a result, neuropsychs can play a key role in helping determine the most effective course of treatment.

Neuropsychs can also help track changes the injury is causing over time, both positive and negative. Yet too many providers leave them sitting on the shelves or, in instances were the survivors do not have neuropsychs, make little if any effort to get them one.

Last couple of thoughts for this essay (there will be more essays on this topic). Over the years of working with survivors there are some common themes that are, unless addressed, truly problematic and, for those of us who are survivors, annoying, to put it mildly. I’ll deal with one in this essay. Fatigue.

Too often providers treat fatigue in survivors as if it is something we should just snap out of it. Go splash some water on your face or drink a cup of coffee: two truly bad ideas. First, the water won’t do anything other than make our faces wet and the coffee is risky business. When someone drinks a caffeine drink and feels a burst of renewed energy, watch out, it’s a lie. All the caffeine does is turn off the “voice” in your brain that is telling you that you are tired. In short, the caffeine gets your brain to lie to you.

When you live with a brain injury, your brain is working harder than a non-injured brain. You used to have an eight-cylinder engine in your car; one of the cylinders blows out, now you have seven cylinders. True, the car still runs, but the engine is working harder. And so it is with brain injury. When we are tired, we are tired. We are not faking it.

In this instance, we are not the ones who need to wake up.
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