Vindication At Last

[Gary Sisco]

So, you've heard me complain forever, here, about Bronwyn's mistreatment at the hands of homehealth agencies, including last year an illegal (by VT law) discharge from one. Another has made several attempts this year. But this year we were finally able to initiate a formal appeal of the state's decisions which have always been in favor of the agencies. Guess what? They were forced to perform a real investigation for once that required something of them more than making a phone call saying, "Did x,y, and z happen?" And of course they'd be told "Of course not." End of investigation. No one from the state, for nine years, ever included us in the investigation, never once looked at the documentation we've collected all of these years, and, most damningly, never came to look at Bronwyn's body when injuries and so forth had occurred.

But all of that didn't look good in a formal appeal process so this last time there was an actual investigation, and we won the appeal. More satisfyingly, however, is that we now have it in writing that our allegations were "substantiated," and "numerous violations at the state and federal levels" were found.

If anyone tells you the squeaky wheel gets the grease, don't believe them. What happens is the squeaky wheel gets dismissed as a pain in the ass for whom nothing's ever good enough.

Nine years this took. Nine years of continual high stress over having to battle to receive what in the end is the most basic minimal assistance Bronwyn requires to live in her own home. The stress has been enough through the years that I can feel physical damage to my body over it, never mind my brain or what's left of it. It's definitely taken some time off of my "average expected lifespan," no doubt. Try sitting on a mountain of anger for nine years while your wife or husband is mistreated and see what the physical/psychological results are. It's not pretty.

To put that time in context, Bronwyn was given only ten years by the doctors after her accident. It's been 17-plus, now. It could literally have been the rest of her life spent dealing with obnoxious chair-sitters.

[Tom Storer]

Congratulations! It won't give you back all those years of muted rage and stressful conflict with the gummint, but at least Bronwyn's rights have now been acknowledged.

What does this mean in terms of future care?

[Chris D]

What a triumph for you and Bronwyn, Gary. Here's hoping some material good comes out of it.

[Gary Sisco]

It means, most importantly, that she gets to keep it (her home health care) at least until the next attempt comes along. I don't discount that possibility for a second. Some people do learn from experience, if only for nefarious reasons. In this last attempt, the state actually coached them on how to word the discharge so it could be acceptable but we managed to beat them anyway. The next level of appeal would have taken the case entirely out of the "appropriate" state hands and into third parties and eventually formal court. They had little choice at that point but do the right thing, if only to cover their own asses according to their own rules.

I think we will be safe for a time now, as their fingers will be burning for some time. Then they'll try some other angle. Quads are expensive and they want her gone. I told the investigator that if they'd just leave us alone and take care of Bronwyn correctly so we could concentrate on selling our place, we'd be leaving VT as soon as we can and neither the state nor anyone else would have to hear from us again. On the other hand, they can keep fucking with us until we lose the place and they find their own asses answering to a court. That particular department of the state, we've learned, can be and has been successfully sued in the past. Also, it has a different commissioner, perhaps slightly less dense than the previous one, who, having proved himself an utter moron, was of course therefore promoted to deputy secretary.

There are by VT law only two agencies that can provide services to Bronwyn publicly paid (Medicare). One was allowed to illegally discharge her last year. The second is the one we just managed to beat. That was their fourth or fifth discharge attempt, and they've also been strongarming her doctor to accept their own plan of care as they want it written. Her doctor has refused and is, amazingly enough, writing a plan of care based on Bronwyn's medical needs. She's also complained of same to the state, which definitely helped us, as it's one thing for us to say their strong-arming a doctor and violating this or that. Another to have an MD formally charge them with the same.

You can't imagine the stress, unless you've been there. No homehealth care for Bronwyn means life in a nursing home. There are no other alternatives. She's only 46. We're not ready to start waiting to die yet.

[patricia]

I'm so glad for Bronwyn, and of course for you Gary.
I can't imagine the stress you both have been living under.
Unfortunately, unless those who purport to be public servants start to think of the public as people they serve, instead of case numbers to be "managed", depersonalization will continue for others in Bronwyn's circumstances.
Sadly, many of them just don't make it. They die of just being left to languish, without the assistance that a civilized society prides themselves on saying they have.
Talk is cheap. Actually providing the care is not. But, healthcare is not supposed to be a bottom line item.
My thoughts are with you both.

[tippy]

Gary, I am glad to hear this news. Sorry you've had to fight tooth and nail for so many years to get it.

[Gentle Giant]

Great news, good for both of you. Who knows, maybe the fight is what has helped her to defy the odds. The important thing is that change gonna come, for her and for others who will be helped because of your efforts.

[Brian Olewnick]

Congrats Sisco & Bronwyn!

[gnhrtg]

Congratulations! I hope you'll (both) have an easier time in the future.

[walto]

Excellent.

[Mike Schwartz]

Gary;

I wish you both the best, and that there is a sense of relief on all fronts so richly earned!

Hard to believe such a long battle had to be waged, and finally won [!!] over such a basic no-brainer issue, and the sheer draining energy you mention is hard to fathom.

[stonemonkts]

Congratulations, Gary. I wish you both all the best.

[Jason Bivins]

OutSTANDing news!

[Sandi22]

This is great to hear Gary. We know of what you're going through, dealing with bureaucrats, and others of their ilk for decades, and what it can do to your physical, as well as your mental health; your state of mind. It can, at times, become overwhelming.
I hope that this ends it, that there will be no more battles to fight, but with these types you have to ready yourself for yet one more, or several more confrontations.

We went through thirty years of wins and loses, and with threats of the Supreme Court with the Federal Attorney telling us that they had the governments resources and time their attorney leaned over in our faces and whispered under his breath, that we were little and even though we had won all of our hearings, they would "bury" us, they would "ruin" us, that we'd be dead before they'd let us win over them. This upstanding attorney, Jay Binder, (I may have his name down incorrectly) is also a minister, "a man of the cloth". We were told, this by our own attorney as we were all being introduced to one another at the first hearing he attended. So I hope that you don't have a Jay Binder (? This is the name of our Extension Agent in Madras, a very nice man) to grab onto you like a pit bull and not let go. He had no scruples, nor did the State Directors who shut our water off killing our lawn, killing our clover in our pasture, which sold for more than alfalfa hay, with me, as it was hurting us physically, me especially, by doing it. Pesimistic to be sure, but it's the government, albeit only your state government, however, We've come to the point of not being comfortable with anything that happens with government employees, as they're heartless.

I'm going to think the best for both of you, and believe it's over, as you've won fair and square, and that there is undoubtably an undeniable need, and that they will finally honor what they should have done in the first place, without any further denials.

[Gary Sisco]

Thanks, all. It's really been a vicious nine years. Everything else we've done we've done in addition to fighting these issues out. That's been our primary activity since before we even moved into our house, as the first agency attempted to refuse to admit her at all, though we'd already bought our land and built our house. Ever since, we've been fight with one or another of these homehealth agencies, the state bureaucracies, and the federal Medicare bureaucracies, almost non-stop. We never went longer than, say, three months without having a new fight break out in or another or all at the same time.

So, now, "all" we have to do is operate and sell our farm, take care of the horses and other animals, the house, the land, fences, etc., and Bronwyn's caregiving.

Until some other nitwit issue breaks out.

If you think negatively, you can sometimes be pleasantly surprised, if only because of the law of averages.

If you drop your guard, however, you will pay for it, one way or another.

[Gary Sisco]

I really wonder what's going to happen as the boomer's start declining physically in large numbers, overwhelming these systems, which can't even deal with what they have today and are facing the largest generation of Americans, ever, just around the corner. They've known for years that this would eventually be the case but of course have done nothing to prepare for it. A whole lot of people are going to find out the cost of their political complacency and somnambulism of so many years, though, when they find out just how little help they can expect and how much and hard they will have to fight to get and keep what there is. It's not going to be pretty.

[Gentle Giant]

Originally Posted by Gary Sisco

I really wonder what's going to happen as the boomer's start declining physically in large numbers, overwhelming these systems, which can't even deal with what they have today and are facing the largest generation of Americans, ever, just around the corner. They've known for years that this would eventually be the case but of course have done nothing to prepare for it. A whole lot of people are going to find out the cost of their political complacency and somnambulism of so many years, though, when they find out just how little help they can expect and how much and hard they will have to fight to get and keep what there is. It's not going to be pretty.

You're 100% correct, Gary. Unfortunately, no one in Washington has bandwidth for anything except Iraq and hollow campaign promises.

[Gary Sisco]

Even Bronwyn's doctor, who used to be my doctor and is very smart, for years kept telling me we had to avail ourselves of the "services" available. I'd tell her there was the most basic of basic homehealth and nothing else. She didn't believe me. Finally, she got really fucked over by the agency that did successfully, if illegally, discharge Bronwyn last year -- opening herself wide to legal action -- and started doing her homework. She's been a stalwart on this second adventure, and that agency's really been putting the thumbscrews to her, too, for months. They keep telling her to write what they want for a plan of care, which is wholly medically inadequate and even dangerous for Bronwyn, or they'll just drop Bronwyn altogether and she'll have no services at all. The doc has refused and stood firm, this time, because they've so pissed her off. MDs are not accustomed to being ignored and dictated to by RNs, but also, she's one of that kind of woman -- I met many, many of them in peace movements and so forth -- who, once on the case, stay on the case, with a kind of quiet determination that is some kind of serious to budge or dissuade, once they've started.

I still don't have a doctor, though, because I fired her when she fucked up with the previous agency last year, and I've paid for it ever since, as there isn't a single doctor "taking new patients" within an hour's drive of where I live.

The doctor and I have since made-up and are friendly again, of course, but in the meantime her practice is booked up, too.

Well, I did that to myself, so I can't complain.

[jaka]

What a story. I had no idea of the extent of it.
Almost seems unbelievable in our far from perfect but mostly honest healthcare system.
Congratulations and hope for the best to come. Our thoughts are with you.

[claude]

My wife has successfully gone to bat for many disabled people in our community. The beaurocratic idiocy would be funny if it wasn't people's lives in the balance.

Glad you got things straightened out Gary, it's a continual battle unfortunately.

[Gary Sisco]

Oh, man, this stuff can get vicious like you can't believe until you experience it. And Vermont, it is said, and maybe rightly for all I know, has the best such system in the country (there are a bunch of states that have none at all so that has to also be factored in).

I'll tell you what, though, it'll take away any unthinking faith one might have in the allegedly inherent nurturing by females. It's a world populated almost entirely by women and we've encountered a hell of a lot of them who have the moral sentiments of reptiles and are just as cold blooded. Don't believe the hype, as is always the case.

In our town, there is another young quad that was successfully dumped, and another in the town next to ours, along with a guy dying of MS. These are just people we happen to know of through our personal lives. We'd probably be amazed if there were ever a real investigation into the whole system. An old man in southern VT was living on a couch 24/7 under filthy blankets, surrounded by buckets of human shit and piss, no plumbing at all working in the house, and the state people in charge of overseeing homehealth -- two hh workers were going in and out of there every day -- admittedly knew about it for more than a year and did nothing. A local cop finally arrested the guy's son and charged him with negligence. Cop said if he'd had the jurisdiction, he'd have arrested and charged a bunch of state people as well, but he didn't and couldn't. I'm with the cop myself. If the people grant you power and you misuse it, there should be personal consequences. Way too often, there are none and so a certain kind of arrogance develops, where people think they are immune behind their desks.

[Sandi22]

It's like the Nazi's.

In the concentrtation camps, it was easier for the guards to be brutal, that way losing any empathy which ate at them if they were to see the prisoners as human, as someone who's suffering they would've liked to alleviate, knowing they couldn't.

I've had the meanest nurses and the least competent here in Central Oregon's St. Charles Medical Center than I've ever had, and they were all women. There were some who were pretty terrific, a couple of the men and a few of the women, and then there were two of the very best, Karen Rae, and Gracie, etc., but for the most part, if there was compassion, I couldn't see it. You're just a meal ticket to them; with hospitals being run much like a jail; forgetting that you are, after all, a paying customer. They are working for you, much like a hotel's staff, so where do they get off with their strong arm behavior? I have to quit this, as I could go on and on.

[Monte Smith]

While I admit that I was relishing the notion of the explosion of violence that would occur should Vermont bureaucrats push Sisco over the edge...well, this is probably the better resolution. Congrats, Gary, and best to Bronwyn.

[Sandi22]

I bet they had a special bottle labled "Sisco Pills", as you had to have been a big pain to them don't you think Gary? Especially if you dealt with them in the flesh.

If you can show up in person, it's the best way to get things done, if you can get into their heads a bit and see how they tick, it helps you to present yourself in the best light, one they're more likely to understand, that is if they're not the totally hardened sociopathic type. A lack of empathy or sympathy runs rampant with people who handle real human beings cases, (along with incompetence, major incompetence more often than not). When they look at you, it's as though they have the eyes of a goat, it's as if nothing's there. To all appearances it's as though they're not dealing with, and trying to help a real person; with their boredom, curtness and/or rudeness being usual; so very apparent, and so very obvious, that it becomes maddening and so very irritating. But you have to keep butting your head against that wall they errected, or nothing can get worked out, it does, however, become so very tiring, but you just have to grin and bear it, and not quit, or they've accomplished their task, having made mincemeat out of you.

[bluenoter]

Gary, that's terrific. Si Se Puede!

[hornplayer]

Glad to hear you finally won at least a small victory.

What was that crap about the "wheels of justice?"

[john williams]

Finally some good news Gary. Congratulations!

[Gary Sisco]

Thanks, all.

Sandi -- There were many face to face meetings through the years but I finally had to stop going because I can't listen to certain things and just sit passively afterward. Like one time when the guy in charge of these issues for the state (since promoted, like most losers) said, "you know, in Oklahoma they don't have any homehealth...." I looked at him with what anyone with sense would see as a dangerously blank face and asked if that's what he tells a black man when he's pulled over for driving while black in Vermont. "Be thankful you're not in Mississippi." The last draw, though, was a letter after Bronwyn had had a rib broken after they'd done a transfer attempt they'd been told would cause physical harm. The official state response read "Some discomfort is to be expected." I told Bronwyn after that there was no way I could go to face to face meetings again.

Now they have all kinds of security crap and bullshit because of 9/11 but it's all a joke to anyone with any kind of serious intent. Rent-a-cops-is-us.

It does never end, however, so the most you can do is enjoy the victory while waiting for them to open another front. It's all about money and money issues are never over.

I caught them using logic, which they find disturbing, frightening, even. They insist there are no financial issues while at the same time saying that Bronwyn's care and care plan would be no problem if she were on Medicaid as opposed to Medicare. But of course there would be no difference at all in that case except for money. They hate it when you do that.

Last year the state branded me in writing a very dangerous man but neglected to mention that the only source of any kind of evidence for said libeling by the state was an interview with a former agency's employee who was at the time in a full-blown psychiatric crisis and was also tormenting Bronwyn nightly with drunken phone calls accusing Bronwyn of having "mind control powers" that she could "emanate" over distance and control what people think. She'd written in an agency log that I had a pistol where she could see it, to scare her with. They got a good five or six pages of nonsense out of that.

In reality, all that had happened is what always happens during beer, er, deer season here in the fall. When tens of thousands of guys, some percentage of whom are certainly drunk and a large percentage of whom never venture into the woods or touch a firearm the rest of the year, are walking and driving around armed, a fool isn't. That's the way I look at it, especially where we live. Our house can't be seen from the woods until you are right on top of it, and Bronwyn is quadriplegic so she can't even hit the floor if necessary. And sometimes it is. A guy a couple of years ago caught a round through the head while he was watching television in his living room. Someone had fired at a deer in the forest and through one of the freaks of physics his round managed to not hit any trees or anything else all the way to the guy's house, through his window, and into his head.

But then there are the human freaks. Like the guy who shot a coyote in my neighbor's yard a few years ago, inside her safety-zone signs, and when she challenged him about it, he shrugged. "What are you going to do about it?"

Stuff like that. Guy didn't even take the dead coyote. Just left it there in her yard. There aren't any cops to call, here. Only state troopers and they could be 40 minutes away, easily, assuming they aren't busy already. And game wardens of course, but they have their hands more than full that time of year.

Anyway, the state made a big deal out of it and actually wrote a report on this here dangerous character. Our attorney said the state's attorney was so dense and stupid that he had to actually ask her if she were really an attorney with a license to practice law in Vermont. She'd decided at the outset that I was a "very dangerous man" and sought out her "evidence" afterward.

In reality, all that had happened was me telling the guy in charge exactly what I thought about his performance in the best drill sergeant tradition. But these clowns are not accustomed to be dressed down in any serious way by anyone with a serious brain and serious issues in his own home that the clown's aggravating beyond belief. I told the state's attorney to shut up when she tried to tell me I couldn't talk to the man the way I was talking to him. She's apparently one of the too many arrogant assholes in the US who think they can tell others what they can say or do because they have a bunch of letters printed after their names on a business card, all of which spell "bullshit" to me. I'm not a Brit, so I'm not impressed with such gibberish. I once wanted to have cards printed that read "Gary Sisco, GED."

But the clownish attorney never actually talked to the woman in crisis about what she'd written in the log. By then the woman had been stabilized by her doctor and she has made several attempts to make those matters right by me, but the state has no interest in hearing about what was true, only about what they thought they could use. She works for Bronwyn again, even now, but not for the agency she worked for then. She works for us privately doing stuff that used to be provided for years by homehealth but isn't anymore. We are having to pay out of pocket for two-thirds of what is supposed to be provided to Bronwyn as a legal right in Vermont -- one of the things that's making our financial lives precarious, indeed, right now.

As for me, I just want to get the fuck out of here but we can't do anything until we have a for-sure buyer of our farm. After that, I'll take one last look at Vermont through my rear view when I cross into New York state and I'll never be back again.

This place is rapidly becoming a dictatorship of the nitwit. Benign of course. And for your own good, needless to say. If you can remember when the place was an actual democracy, it becomes more than irksome.

[cookie]

Gary--
Congratulations to you and Bronwyn. It's a shame you had to waste so many years and so much energy on this. I'm glad that eventually you prevailed. That's great, man.

[Gary Sisco]

Thanks, Cookie. If I ever needed proof that Vermont is no longer ruled by Vermonters, I have it now. More than I ever wanted. Almost all of these nitwits are from someplace else and wouldn't know a democracy if it bit them on the ass and wouldn't like what they saw after that. They can keep the place. It doesn't really exist anymore except by name anyway.

The oddest thing about the whole experience, to me, is that I'm one of the ones who had to take the beatings from the rednecks in the old days, that helped make this place a soft enough place for these imports to land in the first place.

I'm much looking forward to a new place, with different people and new runnings to learn. I've been here for too long anyway, this time. The strange thing, to me, looking back, is that the only reason I came back here when I left Nicaragua is because that's where the plane ticket ended. Twenty-two years later I'm still here. Life's what happens to us while we think we're planning it.

I also learned, the hard way, that you can't go home again. The man was right. I hadn't lived in this town since the early 70s until nine years ago. Hey, let's move back to ... !

I won't make that mistake again.