Author Archives: Peter Sanford Kahrmann

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About Peter Sanford Kahrmann

Writer, disability rights advocate, civil rights advocate.

It’s About the Ethnic Cleansing, Stupid

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“What are they doing to us?” one young woman asked, her one functioning hand gently twirling a cup of coffee on the worn Formica table top.

“Anything they want,” came the reply, this from a short narrow man with kind wide-set blue eyes, a baseball cap perched on his head.

“It’s like we don’t exist,” the young woman returned, lifting and finishing the last of her coffee. “I was in college before my stroke. Twenty-four years old and a stroke. Go figure. Now look at me. Fat from meds, in a wheelchair, and now I got people saying maybe I shouldn’t get the support I need cause I don’t need it.”

Max, sitting quietly listening, unfolded and refolded his Daily News. For reasons known solely to Max, there was comfort in the act of folding and refolding the day’s Daily News. He had no interest in reading it. Never did. It was simply that the act brought comfort. Why, he was not entirely sure. And in the nuts and bolts of it, he didn’t care why. He was just glad it made him feel better. Looking up at his friends, all, like, him, survivors of brain injury, he said, “The fix is in.”

Martha, an older woman with dark chocolate skin, sharp clear brown eyes, shifted the position of her wheelchair, said, “Max is right the fix is in.”

Dolly’s eyes wet up. “What fix? What’s in?” She began to breathe hard. The young woman reached out and touched her shoulder. “Easy, Dolly, it’s okay.” They all knew Dolly had frontal lobe damage, after all when a drunk driver loses control of his car and runs you down, the front of your brain is bound to take a pretty hard whack. Sure enough. And they all knew that Dolly got upset race horse fast because her frontal lobe couldn’t modulate her emotions like it did in the past. It wasn’t like the damage drove all her emotions like this. Mainly fear, sadness and humor. Sometimes Dolly got to laughing so hard at something she couldn’t stop, and she had one of those infectious laughs so attempts to slow her laughter were, more often than not, overtaken by the inexplicable urge to join in and soon you had a table full of people laughing and that’s never a bad thing.

“It’s okay, Dolly,” Max said. “What I mean is it ain’t about helping us be safe or in the community, its about either they can make money off us, some folks are like that anyway, or, like now, when the government wants to save money, they toss us back into the sea and don’t give a shit if we swim or not.”

“My Daddy taught me to swim when I was three,” Dolly said, her wet red face now lit up with a smile.

“See,” Martha said, “you’re better off than you thought.”

“So what are they doing to us,” the young woman said, returning to the table with a refreshed cup of coffee.

“Looking for any excuse to cut our services or throw us off the waiver in the first place,” Max said. “It’s pretty much a version of ethnic cleansing. I read once that ethnic cleansing is "the planned deliberate removal from a specific territory, persons of a particular ethnic group, by force or intimidation, in order to render that area ethnically homogenous." Well, what do you call what’s happening. The ethnic group is us, we’re be tossed off services or denied services altogether, the Department of Health does whatever the fuck it wants, and what’s the result, we’re gone and only the non brain injured are left. Like I said, the fix is in.”

Martha nodded. “You here about that guy upstate. They denied him the waiver. My sister knows him, Freddie I think his first name is. Fell of a building when the scaffold broke, fell two stories.”

“Did he die?” asked Mort, always inclined to drift in and out of conversations, rarely getting the whole gist.

“Yeah, Mort, he died,” cracked Max. “And still he ain’t hurt bad enough for them to help him.”

“Fucked up,” said Mort, smiling, not at all minding that he’d missed the point, glad to be with his friends who loved him and he them.

“They said he didn’t have a brain injury,” Martha explained. “The RRDS said he had to get a neuropsych. Never mind his neurologist and neurosurgeon gave all kinds of records proving he’s brain injured.”

“What he do?” the young woman asked.

“Got the neuropsych. Neuropsych said yeah he’s brain injured and yeah he needs the waiver and the RRDS said not good enough and now they guy’s shit out of luck.”

“Like I said, the fix is in.”

“So what happens to us?”

“We hope we don’t get caught up in this ethnic cleansing.”

Now Is Not The Time

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It is safe to say I am not the poster boy for patience these days. Things I’d normally let roll off my shoulders are being snapped at.

There are a few stressors at the moment. I have to leave where I am living as a member of my landlord’s family needs the home. My landlords have, for these past nine years, proved themselves to be the greatest landlords in the world.  I am also on disability with a sprinkling of money here and there for writing along with the occasional speech; there is a reason there is no fancy car in the driveway. Truth is I wouldn’t want one anyway no matter the state of my revenue.

Thinking I was moving to Herkimer County New York we switched my NY TBI Waiver benefits there and now, given that the deal for the house we’d hope to buy looks to be dead in the water, I find myself without rent or utility subsidies and despite the fact I may be moving to a place close to my current home, I am dealing with a state Department of Health that will likely make it impossible to regains the subsidies. Those of us on the TBI Waiver are having their services sliced and diced and, in too many cases, entirely denied  by a DOH that essentially creates regulations on the fly and doesn’t even follow what few regulations they have set forth in the manual they wrote.

Moreover, because of the presumed move to another county, there are, for this month, no food stamps. So, a for man who has  been homeless before, hospitalized twice for hunger pains, the pressure is on. While intellectually I know I will not wind up homelessness, I think it fair and accurate to say that once you have experienced real homelessness in your life, its specter is always near. Along with this, my body, normally an ally, has paid the price. Nights are fairly packed with back spasms which strike sporadically throughout the day as well.

This too shall pass, as they say and I know that. I have been reading some good books, having, I am ashamed to say, started reading John Dos Passos for the first time this year (a staggeringly brave and brilliant writer).

Having said all this, now is not a good time for someone to give me any grief. Some years ago someone I was working with said, “You’re a tough guy you know.” I was mortified! To me tough guy meant bully and not only have I never been a bully I have always been the one who has looked to take on the bully. I took my mortification to my friend and sister in my heart, Judy.

“You got a minute?” I asked.

“Sure,” she said, sitting down, smiling.

“Am I a tough guy?”

“Tough guy?”

“Yeah. Tough guy. Like in bully.”

“You’re not a bully, no. But you are a tough guy.”

“What do you mean?” More mortification.

“You don’t take any shit from people.”

Now that I could live with. And it’s true, I don’t take any shit.

Especially now.

I Miss Her Always Now

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Two days after she died I received a package from her in the mail.  In it was a St. Christopher’s Medal. Inscribed on the back were the words:

Peter

I will always be in your heart

Love

Mom

Her name was Leona Patricia Clark and she gave birth to me on October 2, 1953 in New York City’s Hell’s Kitchen. She was a single 20-year-old Catholic girl from Bridgeport, Connecticut. She had not been dealt an easy hand in life. Her mother died when she was three and a few weeks later, her father, an alcoholic, left the house early one morning and never returned, leaving my mother and her 12-year-old brother Frank on their own. Summoning up strength-of-spirit from God knows where, Frank put my mother on the back of his bicycle and peddled some 20 miles or so to an aunt and uncle’s house. There they were raised.

Seven days after I was born and against all her sweet heart wanted, my mother surrendered me for adoption.

We would not see each other again for nearly 34 years years. Not until I found her and we were reunited  on January 8, 1987 in Stamford Connecticut. Over the years I would learn what I’d always known to be true; my mother was my emotional and spiritual familiar. She was my beginning, my heart and soul, the light that got me through my days of homelessness, the deep heart spiritual soil from which I was formed.  There was, we both knew before and after we were reunited, a connection  so deep and powerful between us it was a universe unto itself, untouchable and unfathomable by any but the two of us.

Now, when life strikes hard as it did today when the home we’d thought was ours fell from our grasp, I think of my mother and the tears flow and she is with me still and I miss her always now.

Me & Mom 10-2-2000 a

NY DOH Wounds Rights of Brain Injured

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Reliable sources say the New York State Department of Health has told TBI waiver staff that they must side with the DOH and against their clients when their clients appeal decisions made by the DOH in a Medicaid Fair Hearing.

A Fair Hearing affords people the chance to contest a DOH decision. As regular readers of this blog know, the DOH recently denied this writer’s request for white noise machines and a life alert.

Sources say the DOH Legal Department claims companies and individuals approved to provide waiver services are under contract with the state and therefore it would be a conflict of interest if they were to side with the brain injury survivors, the very people they are supposed to serve. Asked what options waiver staff have if they disagree with the DOH’s decision, sources say waiver staff can help survivors find community advocates to appear with them at the hearing.

The denial of my request came in the form of a letter from the Capitol Region’s Regional Resource Development Center (RRDC).

RRDCs are contract employees of the DOH who oversee those who provide and receive Traumatic Brain Injury Waiver services in their region. The TBI Waiver is an array of services that helps brain injury survivors live in the community. TBI Waiver Providers are companies and individuals who provide these services. Service Coordinators are providers who act as case managers and work with waiver participants in identifying  the services and developing the treatment plans that best serves waiver participants. Essentially, the Service Coordinator is the quarterback of the treatment team that works with and for the participant.

This legal directive was, according to sources, presented to RRDCs across the state in monthly conference calls facilitated by DOH employee Beth Gnozzio. Ms. Gnozzio has developed a reputation on several fronts for not responding to emails or phone calls.

The directive itself appears to violate the DOH’s TBI Waiver manual which reads, in part, that waiver participants must “Receive support and direction from the Service Coordinator to resolve (their) concerns and complaints about services and service providers” The directive’s rather apparent conflict with the manual does not stop there. The  TBI Waiver manual  says (bold is mine): “An individual has the right to seek a Medicaid Fair Hearing for many reasons including issues related to the …TBI waiver”. The manual also says brain injury survivors will “Have your service providers (to) help protect and promote your ability to exercise all your rights; identified in this document”, the document being the manual itself.

How on earth service providers, comprised of service coordinators and, for that matter, all waiver staff, can help protect and promote the survivors ability to exercise their rights, one of which is the right to a fair hearing, while at the same time they are being told they must stand against the survivors in a fair hearing is beyond me.

A Denial & A Memo

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 The Denial

It came as no surprise today when I received a notice from the New York State TBI Waiver denying my request for white noise machines and a life alert. 

Never mind that I live with significant noise sensitivity secondary to the brain damage and never mind that I live with brain damage, a heart condition, PTSD and asthma and, by the way, live in a rural area far from a hospital. Never mind that my physician and my psychotherapist wrote letters documenting that the requested items were medical necessities.

What is clear is that the denial I just received, and similar denials being issued across the state, more often than not include every form of reasoning except the best interest of the brain injury survivor.

The denial was, I suspect, issued by some so-called medical director, who, in all likelihood, knows little about brain injury, never reviewed my records, never talked with my doctors or, perish the thought, me.

There are, as some of you may know already, a dramatic increase in fair hearing requests across the state in response to survivors of brain injury receiving notices that they are being kicked off the waiver,  or having their services reduced or  cut altogether.

Will I be asking for a fair hearing, a form of appeal provided by the law?  You bet.

More to come.

Memo to DOH

Early in  his first term President Obama said, “Sunshine is the best disinfectant.”  He meant that bringing things into the light, into the open, creating transparency, was the best way to shed light on dysfunction and wrongdoing, make it more difficult to engage in shady backroom deals. This sunshine also brings into the open the fine things that are being done, the hard working efforts that people and agencies and companies do make. Yesterday’s blog post praised Sunnyview Rehabilitation Hospital along with Natalie Marabello for ultimately handling a complaint in class way rich with integrity. Which is, more than can be said of the DOH, which is still reviewing the same complaint and has a complaint line protocol that does not require it to even respond to the complainant.

Over the years, in public and in private,  my stance has always been the same. If individuals, groups, companies or government agencies make decisions that truly protect the equal rights of people with disabilities (and all people by the way) and  assure that those who work with us are supporting our quest for independence, I will openly praise and support you.

If, on the other hand, there are individuals, groups, companies or government agencies making decisions that deny our equal rights and deny our right to achieve independence then I will, after private attempts at communication fail, expose you every single time.  That’s what advocates do!

I know some do not like it when this blog brings things into the open. But some of those who don’t like it bear some responsibility for things appearing in the blog. Consider this: when attempt after to attempt to communicate is not responded to,  what should the person with the disability do? Fall silent? If we do, then we are allowing the lack of communication to still our voices, and that is the last thing that should happen.

Silence has no place in this – sunshine does.