Why I fight (the bullet)

The x-rays of the bullet lodged in the frontal lobe of my brain make the point; life happens to us whether we like it or not. So does death.  So do experiences whose realities are so ruthlessly sudden and savage that when (if) you come out the other side with something resembling your wits about you,  you’ll likely find yourself viewing things from a new perspective.  Kahrmann Head Xray 3

Now, needless to say, when I was held up in Brooklyn  in 1984 and shot in the head, things changed. Far, far more than even I realized at the time. The mind and body, it seems, have a way of digesting certain realities over time, particularly when trauma is involved. Were they to absorb so massive a reality in one fell swoop, I suspect some would implode. That would’ve been my fate.

It must be said, I suppose, that all my life I’ve acted, in one way or another, to expose and, hopefully, deplete bigotry’s presence. Whether  its racism, homophobia, anti-Semitism, sexism, the unforgiveable treatment of our senior citizens, and so on, I’ve never been able to sit on my hands, as it were, when  people are being oppressed, having their rights denied, and, as so often is the case when it comes to persons with disabilities (PWD), dehumanized. A reality that came home to roost when I became a PWD as a result of my brain injury and PTSD.

PWD are on the receiving end of some of the most vicious forms of bigotry imaginable. They are perceived and treated as if they are little more than revenue streams for the greedy, and, equally despicable, tattered remnants of humanity whose only purpose is to be trotted out  for display purposes when various agencies decide to use them as bait for donors, or visual fuel for self-aggrandizement, or both.

It would be naive to think this kind of behavior is linked solely to for-profit companies. Not so.   I’ve known and know some non-profits run by arrogant, self-absorbed, self-aggrandizing cretins who, in truth, don’t care a wit about the people they say they care about.  Next time you run across a non-profit company in business to help PWD, find out how many PWD they employ. Find out how many PWD are on their board of directors. And, while you’re at it, find out Kahrmann Head Xray 2what they do with the money they raise. See how much is used to directly benefit the lives of those they are said to care about. Find out – to the penny.

I am writing this essay, in part,  to help some people understand (many already do) why I advocate the way I do. Why, as some have rightly observed, my  advocacy style might be rather aggressive. Some would say, too in the oppressor’s face. Some have wondered why I’ve continued to advocate even after losing all my income in 2008 for doing just that (I would not remain silent when an Albany-based New York State Traumatic Brain Injury (TBI) Waiver Provider was  blatantly denying program participants their rights). Why I’ve continued to advocate even after the New York State Department of Health, also unhappy with my advocacy, simply took away my housing subsidy, and, along with the aforementioned provider and others, damaged my ability to be employed in the field of brain injury in New York State and, I suspect, Massachusetts as well.

All that backlash because I would not remain silent when I saw, in this case, individuals with brain injury disabilities having their rights denied,  sometimes brutally so. One particularly abhorrent creature comes to mind.  When a program participant would tell this creature about something they were having a tough time dealing with, this vile thing would invariably respond with, “To bad, so sad.” The program’s owner was well aware of this person’s behavior, and yet he works there still. Testimony,  I believe,  to the owner’s profit-before-people mindset.

As to why have not stopped my advocacy. There’s a constellation of reasons.  I was raised in a civil rights family, our minister marched with Dr. Martin Luther King Jr. Growing up me heroes included King and Geronimo. My list of heroes grew to include Mandela, Elie Wiesel, Medger Evers, Gandhi, Malcolm X, and more. All of whom suffered more for their advocacy than I ever have.  Since the shooting I’ve met others who are heroes of mine. People who are not household names. Here is a taste.

  • A remarkable woman who, while walking with her husband one wintry day pulling their two children on a sled, was hit by a snowmobile driven by an intoxicated human being. When she regained consciousness, she learned she was permanently paralyzed from the neck down.  She also learned her two had died in the accident.
  • A woman who sustained a brain injury and forever lost her ability to walk because of mosquito bite that led to meningitis.
  • A young man who,, while in a car on his way to a party with friends, was in a car accident. He suffered a brain injury and witnessed the decapitation of two of his friends during the accident.
  • A several women who suffered strokes in childbirth.

That’s just a few, I could go on. I have a long list of heroes. I also have quite a list of graves too. Those who didn’t make it, sometimes because the greed-based system failed.  I have plenty of motivation to fight.

And then, of course, for me there is that moment I came to on the ground after I was shot. That moment when I knew I was going to die. I was completely alone in that experience. One of the gifts of having survived that is this, there is nothing any government or provider or company or agency or individual can do to me that comes close to that hell. Not even a little.

 

A word on oppressors & advocacy

Any company, agency,  government, school, healthcare provider, individual, who seeks to minimize the voice of those they claim to serve is an oppressor. To be fair, some get caught up in group-think and find themselves supporting decisions, methods, laws, protocols, directives that oppress a group or groups of individuals. Others know bloody well what they are doing. Some oppress out of a palpable dislike for those they claim to serve, while others do so because those they serve, people with disabilities (PWD) for example, are little more than revenue streams in their eyes. Moreover, PWD have been used as fodder for those who revel in the sewage of arrogant self-aggrandizement.

The question is, a willful oppressor or an oppressor out of ignorance, or, equally relevant, out of fear? Fear of reprisal if he, she, or they hold the oppressors accountable. Dr. Martin Luther King Jr. was absolutely right when he said, “In the End, we will remember not the words of our enemies, but the silence of our friends.”

Back in 2008 I lost all income and all employment because I would not remain silent when a particular New York State health care provider, a Traumatic Brain Injury Waiver provider to be exact, was denying the rights of those participating in the program in part by community-based warehousing. In other words, put as many difference services on the shoulders of the program participant so you can bill (make money) as much as possible. It was made very clear to me that I needed to go along to get along or lose everything (meaning, in this instance, all my income and healthcare coverage). I chose that latter.

I knew then, just as I do now, that real human rights advocacy (as opposed to lip-service advocacy) can be a bloody business. If you are the real deal on the advocacy front you’re in good company: Mandela, King, Gandhi, Susan B. Anthony, Malcom X, Medgar Evers, Harvey Milk, Elie Wiesel, Simon Wiesenthal, Gloria Steinem, Betty Friedan, Frederick Douglass, Malala Yousafzai, just to name a few.  All of the aforementioned paid dearly for their advocacy. Loss of freedom, loss of life. So, when it comes down to it, any price I may have paid pales in comparison.

It seems to me the job, if you will, of any real human rights advocate, is to, by any non-violent means necessary, drag the oppression and the oppressors into the open, and hold them accountable.

Recently I was pondering a column about accountability. I found myself wearing a rather large smile when several thesauruses listed accountable and responsible as synonyms. I know  a few oppressors who, on the one hand, would, with misplaced pride and predictable defiance, say they do their jobs responsibly. Yet the moment you hold them accountable,  these folks would slither under a rocks with remarkable speed and spit out venomous accusations of unfairness at those holding them accountable.

Oh well.

The Tightening Noose

It is very rare my anger fires-up to slam the table top with fury level. Yesterday it did, blisteringly so.

When you are on a fixed income society deems worthy of a rent subsidy (Section 8 in my case) the rule of thumb is one-third of your income goes towards your housing, the subsidy pays the balance.  If you are single like I am, you have what’s called a one-bedroom voucher. The amount of rent your voucher provides for is determined by where you live. A one-bedroom voucher provides for a higher rent in, say, Westchester, New York, one of the wealthier community in the country. For a less prosperous community, the allowable rent would be lower. That’s fine. I’m okay with this.

Okay then. My current lease will be up soon and so I recently submitted documentation of my income to the area housing authority that oversees Section 8.  My monthly disability has gone up $18 and my monthly medical expenses (medication co-pays) have gone up $17.20 which means I am dancing on air with an 80 cents a month increase! (That dreamed about cabin cruiser will be mine in no time!) So, my income is pretty much the same as it was last year, which is why I nearly exploded in fury when I received notification yesterday that my portion of the monthly rent will increase by $45. That’s a big hit when you have a little less than $300 to cover food and gas for a two-month period.

I was boiling. On the phone, leaving a voicemail for the housing authority, hand slamming down on my writing table. Fury. There had to be a mistake. One third of my income to housing, cool. But an 80-cent increase in monthly income doesn’t translate into a $45 a month increase in rent. I was wrong. (Math and I have never been on friendly terms.) What I didn’t see coming was this: the allowable rent for a one-bedroom voucher in my area has been drastically reduced, anything over the reduced amount comes out of my pocket. It is moments like this when I want to throttle those hell  bent on protecting the rich and gut the middle class and the poor because God forbid those selfish slivers of slime sacrifice….what exactly?

Now, if someone reading this responds by attacking the government as if the government was and is this big bad nasty-ass entity, let me ask you something. Where exactly are the offerings from the private sector? Hmm? As for the very small minority who thinks that I or anyone in my position like it here because we are leeches, here’s a thought. Let me give you a segment of my life experience to live with; let me fire a bullet into your brain at point blank range, then come talk to me about how much fun your having.

By the way, the woman from the housing authority that works with me and the staff from the area Independent Living Center were very kind, very gentle, and very allowing of my anger and upset yesterday. God bless’m. They’re in no danger of being overpaid either.

In the meantime, the noose tightens, the pressure mounts. Thank God for books and coffee and friends and music and nature and, most of all, life.

A proposal for NY State’s TBI Waiver: Elephant #1: Lack of knowledge about the brain: The Challenge

As discussed in the preceding blog post, this is Part 1 of what will ultimately be a four-part proposal for the New York State’s Traumatic Brain Injury Medicaid Waiver. The first three parts of this proposal will each be published in two segments. The first segment will outline the problem, the second segment will offer a remedy. The fourth part of the proposal will be a summation, along with some final thoughts. I would urge my readers to please share this proposal with all interested parties. If, in your respective journeys, you hear people say it is too late or too soon or its impossible to do anything or change anything, you might want to remind them that there is no time like the present to improve things and, as for any of this proposal being impossible, perhaps they should pause for a moment to consider what it is like for those who are trying taking part in life again when they can’t walk, talk, think, or remember the way you used to. Nothing that will be proposed here is impossible.

The four parts of this proposal, and with a tip of the hat to the phrase, there are three elephants in the room, are:

Part 1) Elephant #1: Lack of knowledge about the brain

Part 2) Elephant #2: The New York State Traumatic Brain Injury Services Coordinating Council

Part 3) Elephant #3: Lack of effective oversight of those providing services to those on the waiver, a problem which is severely exacerbated by Elephant #1

Part 4) Summation and final thoughts

I am encouraging readers to understand that what I am setting down here is rooted in two facts: I worked in the field of brain injury for nearly 20 years and I’ve lived with a brain injury that will, this August 24th,  celebrate it’s 28th birthday. Over nearly 30 years I have seen agencies that care and agencies that don’t. I’ve seen department of health officials who care and those who don’t. I’ve seen groups and individuals that advocate with their heart and soul and I’ve seen groups and individuals that say they are advocates and they are not. Moreover, I’ve seen individuals and groups who are so sadly self-absorbed that they will gladly  and boisterously support a proposal, if and only if, they can figure out a way to claim the proposal is theirs. And, if someone sees something in this proposal they like and they want to claim it is their idea, that’s fine by me. I don’t care whose idea it is. What I care about, and, what I believe most involved with the TBI Waiver care about (and yes, with some exceptions, I am including  those in the DOH), is that the state’s TBI Waiver, whatever its ultimate form, provides New Yorkers with brain injuries with the kind of services that give them the best chance of reaching their maximum level of independence.

 

Elephant #1: Lack of knowledge about the brain

 

Note: You will hear me talk about how those providing waiver services have, over time, developed a level of knowledge about the brain that is far superior to those in managed care companies (and many others). This  should in no way be seen as a contradiction of the assertion that a lack of knowledge about the brain is a rather global problem. Many waiver staff have learned as a result of their individual efforts and as a result of employers who, when able, will take the financial hit that comes with sending a few of their employees to at least some training. The need to increase knowledge of the brain on all fronts, including (and in fairness to) the state’s department of health, is very real.

The good news (and it truly is good news), is this: the majority of companies providing waiver services (we’ll call them waiver providers) are trying with all their might to provide the best services possible, but they are doing so without being able to give their staff the proper training because, in most cases, it is far too costly.  There is no reimbursement for staff training and there needs to be. Those who say it is up to the provider to do this on their dime are just plain wrong. It is simply too expensive. Moreover, there can be no argument that properly trained staff mean a more effective delivery of services and, as a result, those receiving the services will experience outcomes that will grow their independence and thus reduce their need for services, which, for the bean counters, means Medicaid dollars saved.

The way things stand now if a waiver provider wants to send five staff members at a time for training, they must pay the staff while they’re going through training. The waiver provider may or may not have other staff that can do the work of the staff in training. Yet, in some cases, when it comes to counseling services, this strategy would be therapeutically irresponsible.

Lack of knowledge about the brain can and often does result in waiver participants receiving more services than they really need. Lack of knowledge about the brain also provides the less ethical waiver providers – and they know who they are – with an excuse to engage in community-based warehousing, a trend that would be much harder to hide were staff better trained and providers held to a higher training standard.

Right now the lack of knowledge about the brain is leading decision makers to consider changes in waiver services that would be dangerous for waiver participants and, in some cases, stop some people with brain injuries from ever rejoining the community while causing others, now living in the community, to be placed in nursing homes. This is not an overstatement.

Let me be specific:

HCSS (Home and Community Support Services): HCSS staff provide services that help waiver participants manage life in the community with the minimal support necessary for doing so. Apparently, cutting these services dramatically and or entirely is under consideration, the thought being to replace HCSS staff with PCAs, personal care assistants, who are trained to provide a higher level of  care (hands on when necessary). Hands on care is  not needed by many of the waiver participants now receiving HCSS services. There is a gaping flaw in the reasoning behind what is being considered here that can be directly attributed to a lack of knowledge about the brain.

  • What will happen to waiver participants who require no hands on care but who live with a memory (cognitive) deficit that will stop them from finding their way home if they leave their house?
  • What will happen to the waiver participant who has, let us say, no problem whatsoever writing down his or her shopping list but, when they enter the supermarket, the lights and noise and physical activity will be cognitively overwhelming and, were it not to the presence of an HCSS staff member, the shopping trip would not reach a successful conclusion?
  • What will happen to the waiver participant who, in addition to living with his or her brain injury, lives with PTSD  and, as a result,I s unable to leave their home and go for walks or community excursions without an HCSS staff member?

None of the above scenarios requires hands on care, i.e., someone with a PCA level of training. To remove HCSS from the mix would be dangerous and would signal a worsening of services. It would also result in the end of independence for many and the end of a chance at independence for many others.

 

CIC (Community Integration Counseling): CIC is a form of psychotherapy designed to help a waiver participant manage the experience of living life with a brain injury.

  • Any cuts or caps currently being considered to this service are dangerous and, again, very likely a result of the lack of  knowledge decision makers have of the brain. First, the idea of removing CIC as a waiver offering and handing it over to a managed care company is essentially throwing the baby out with the bath water. There are CICs across the state who over time have developed a really admirable knowledge and understanding of people who live with brain damage, to remove them from the mix is a step backwards. There is little enough knowledge of brain injury in the first place, don’t remove or displace those that have the knowledge that is so desperately needed. The shortage of those who understand the brain is severe enough, there is no healthy reason to make it worse.
  • The idea of limiting CIC, requiring that it end at some point, is another example, albeit an understandable one, of decision makers not understanding the brain. The following point is critically important for everyone to understand, to fully grasp. A brain injury is not, I repeat, not a fixed thing. It is not static. For the person with a brain injury it is one experience when they are rested, often another experience when they are tired. The role a brain injury plays in one’s life changes over time. From 1995 to about 2004 I was able to work full-time hours and then some. On or about 2004, that changed. Fatigue became a factor, and, for the first time, a marked sensitivity to noise emerged. I had arrived at a place where I could maybe work 10 or 12 hours a week at most. Dealing with change like this is a formidable emotional ride, which is why CICs are so deeply important, and why no one but the CIC and the waiver participant should be deciding when or if the therapy should end.
  • The idea of ridding the waiver of CICs altogether is, like that of slashing or ending HCSS, or, for that matter, Service Coordination (Case Managers), a bad one. It will be discarding a slew of people across the state who have a far better understanding of the challenges faced by those living with brain damage than any of their perspective counterparts in  managed care companies.

Service Coordination (Case Managers): Service Coordinators, the waivers term for case managers, work with a waiver participants to help them identify and utilize the services that would best support their quest for independence. Like other waiver service providers, CICs, the Behaviorists, and so on, these Service Coordinators have, over time, developed a working knowledge of the brain that is far superior to any of the case managers in managed care companies who, by the way, are burdened with case loads that are, in brief, largely inhumane. Once again, these Service Coordinators are a valuable resource, to discard them would be, in short, a disaster.

Regional Resource Development Centers (RRDCs): RRDCs are agencies under contract with the state’s DOH to oversee waiver providers and participants in specific regions throughout the state. Some RRDCs are superb (Southern Tier Independence Center out of Binghamton and the Southern Adirondack Independent Living Center out of Queensbury, to name two), some are not. To remove the RRDCs from the picture and hand their work over to managed care companies would  be a disaster. The good RRDCs have a working knowledge of the brain and the waiver itself that far exceeds anything a managed care company can bring to the table; it is not even close.

In other words, to sum up this portion of the proposal, decision makers must be careful not to discard those that have, through hard work and experience, accrued a real knowledge of brain injuries and those that live with them. The notion that informed waiver service providers are  important resources applies to all the waiver services, not just those mentioned here.

***

Moving on.

Imagine, if you will, two scenarios that quite a few waiver participants have experienced.

Scenario #1: You’ve had a stroke or been in a car accident and your head hit the windshield. As a result, you find that you still think as clearly as ever but every time you try to talk you have trouble putting the words together.

Scenario #2: As a result of a stroke or car accident, you find that you have the same desire you always did to keep your house clean or go for long walks or go to the gym, but you just can’t get yourself to do or finish any of these things.

Scenario #1 describes someone who is dealing with what’s called expressive aphasia. There is likely due to damage to an area on the left side of the brain’s front lobe called the Broca’s Area. It is there that the brain provides you with the ability to accurately say what you want to say. When it is damaged, the person is thinking as well as they ever did but their ability to say what they want to say is damaged. Scenario #2 describes a symptom attributed to frontal lobe damage wherein the person is telling the truth when they say they want to cook a meal or go for a walk and go to the gym, but the internal ignition, as it were, is not there, or, the “fuel” needed to complete the task is not there. It’s as if you were sitting in the driver’s seat of a car your loved but the car had no ignition, or no fuel, or, was absent both.

 

Structured Day Programs (SDPs): If there is any waiver service that finds itself in the arena of being overprescribed, it is structured day. When well run, and they often are,  these programs are critically important and very helpful. I’ve seen the structured day program offered by RES, a waiver provider in Long Island, and it is, in a word, spectacular. Living Resources in Albany is excellent. The same can be said of the structured day program that was offered at the Cortland Community Re-Entry Program under the remarkable leadership of Joseph Abdulla. Sadly, Healthcare Associates, Inc., parent company to the Cortland program, dropped the ball, and the Cortland program is no more.

Having said this, some SDPs are prime examples of community-based warehousing and a blatant disregard for the rights of the participants and the realities of their injuries.

Let me first explain a reality faced by everyone who lives with brain damage. Simply put, part of your brain doesn’t work anymore which means the rest of your brain must pick up the slack. It has to work harder, in other words. A good analogy would be, you have a car with a six-cylinder engine. One of the cylinders stops working. The engine still runs, but it is now five cylinders are being asked to do the work of six. The fact that the injured brain is working harder is one of the primary reasons fatigue is a factor for many of us. Moreover, the brain itself has no nerve endings so, unlike your arms and legs who, bless them, will let you know when they’re tired, the brain won’t. You have to learn to read the signals as it were.

Some of the less ethical waiver providers don’t want their staff to learn more about the brain because they don’t want to reduce any services for anyone. As the wife of a man with a brain injury once told me, “The second my husband got his brain injury he became a cottage industry.” I remember becoming a CBIST (Certified Brain Injury Specialist Trainer) which meant I had the expertise to train others to CBIS (Certified Brain Injury Specialist) levels of expertise. The Albany-based provider I was working for at the time never once utilized my skills on this front and even scoffed at the CBIS training manual as being useless, never mind that the manual was thanks to the input of a wide range of neurologists, neuropsychologists, and so forth.

A frequent pattern in SDPs run by the less ethical waiver providers is as follows. Waiver participants are often expected to attend the SDP Monday through Friday and stay for the full five hours the waiver provider is legally allowed to bill for. Whether they attend five days a week or not, they and their clinicians are told that they cannot leave structured day to meet with a clinician. They can meet with the clinician during their (the participant’s) lunch hour, or at home in the evening. Why is this? The waiver provider doesn’t want to lose a single solitary hour of billing for structured day. Never mind that the participant will be exhausted in the evening, it doesn’t matter. I know of cases where participants arrive home, exhausted after a full day of structured day, only to have one to three hours of clinical time at home. And, if the participant finally says enough, stop, the provider will drag them in front of the RRDC claiming the participant is refusing the care they agreed to. Now imagine trying to defend yourself if, as described above, you had expressive aphasia.

These are some and by no means all of the challenges now being faced by New York State.

 

Please distribute to all interested parties

 

Next: Lack of knowledge about the brain – a remedy

 

Love for Patricio

When I learned this week that Patricio “Pat” Figueroa Jr. had died, it felt as if the air left the day. I was gutted.  He was 63, much too young to be leaving the world in my book.

Pat was, in so many ways, an extraordinary human being. Testimony to this can be found, in part, when you pause to consider the fact that I only met him once, several years ago, and yet, here I am, thoroughly staggered by his death. Granted, we had quite a few phone conversations, I write for Independence Today, the national disability rights newspaper he published. Our conversations ranged over all kinds of areas, including our love for New York City’s Lower East Side, a place where we both lived.

So what was it about this good and decent man that caused him to mean so much to me? I don’t know that I’ll be able to answer the question completely in this essay and I’m too damned sad to try. I can tell you that one of the reasons was his pure unfettered compassion for people and, in more than one instance, for me personally. He enjoyed reading this blog and after reading one piece that talked about my struggle to keep food on the table he told me the piece moved him to tears. The man knew poor, he knew struggle.

So here’s the thing, if Pat came to mean so much to me after so little time together, I can only imagine what those who knew him far better than I are going through. I’ve met his wife Denise and daughter Melissa.  I love them both too. In fact, only those who don’t pay attention would fail to love these three truly beautiful human beings.

I have no magic words to offer those deeply wounded by Pat’s death. What I can tell them, simply because it is true, is this: even death has its impotence. My father died when I was 15. For years I believed, on a thinking-level, that he was all gone. Then, one day, it hit me, he was (and is) present in my mind and heart on a daily basis. In a very concrete real way, he is still with me every day of my life. Death did not take the all of him away from me. Nor will death take the all of Pat away from those who loved him and love him still. He is not all gone.

pat figueroa

Pat Figueroa