Thursday, July 24, 2008

Willful, Reckless and Irresponsible

JEFFREY TOOBIN, CNN SENIOR LEGAL ANALYST: If people at the hospital put false information in medical records, prosecutors could use that as evidence of just how willful, reckless and irresponsible their behavior was, perhaps amounting to manslaughter.

July 8, 2008, "The Situation Room"

It is illegal in this state (and probably in most others) to falsify medical records, yet many CFS patients find false information in their records, whether because the doctor "thought" he heard them say what he wanted to hear to support his diagnosis or because he "willfully, recklessly and irresponsibly" wrote down false information.

In my case, it was statements to justify discrediting the CFS diagnosis that I had received from a CFS researcher (and confirmed by a rheumatologist just a couple months before). By saying I was "self-diagnosed" (instead of acknowledging that my diagnosis was from someone who wouldn’t mistake CFS for anything else) and fictionalizing a long history of taking anti-depressants, the doctor was able to create support for his desired diagnosis of "post divorce depression".

If I hadn’t gotten the records to prepare for a Disability hearing, I never would have known what lies were told about me. Fortunately, the subpoena also brought us copies of the handwritten notes taken during the appointment, and those notes prove that what the doctor dictated for the official records was not what he wrote down as I was giving my medical history. The handwritten notes are accurate; he "willfully, recklessly and irresponsibly" doctored them up after the fact because he didn’t want to accept that there could be anything except depression wrong with a middle-aged divorcee.

He did the same thing to a friend who doesn’t have CFS. As soon as it came out that she was divorced, he diagnosed depression as the root of all her health problems, and refused to do anything to treat those problems except to prescribe anti-depressants.

She saw me in the time frame I was seeing him, and didn’t think I sounded in the least depressed, so she’s not buying that the doctor had any evidence to support his statements that I was "just depressed" other than his own fantasies that middle-aged divorcees can’t get dates and therefore drown their sorrows in excessive eating. Just because he wouldn’t date anyone over 20 or over a size 2 doesn’t mean that either of us was sitting home alone and lonely; we were both dating very nice men who were an improvement on our ex-husbands. Men who are more interested in intelligent women than in brainless barely-legal beauty queens.

I’ll say it for the umpty-umpth time in this blog: ANTI-DEPRESSANTS HAVE REPEATEDLY BEEN PROVEN BY RESEARCHERS TO BE TOTALLY USELESS FOR CFS. Depression and CFS have radically different symptoms and test results. There are, unfortunately, still doctors who think they’re the same thing, or refuse to accept that CFS is a legitimate physical condition at all. Eventually, their "non-compliant patient" who "refuses to get well" either completely loses faith in doctors and refuses to ever see one again (like Sophia Mirza) or hears about a new doctor who does listen and try to help. If your doctor refuses to prescribe anything but anti-depressants and/or counseling, it is in your best interest to run away. The life you save will be your own!

Get a Job

From this morning’s paper:

Only 5% to 10% of the general population can be considered "self-actualized artists" said Matt Bedwell. The folks at Southside Art Center on Elder Creek Road, where Bedwell is a program director, are no different. The are adults with developmental disabilities who paint, sculpt, weave and make music. But not all the do stands out as art. Only a few of the individuals produce work that clearly is. Sal Perez is one. Much of his work is based on the traditional Mexican Catholic iconography. Perhaps his best works are his ceramic interpretations of the traditional Virgin de Guadalupe. His explanations of his work are slow and halting because of his disabilities, but his engagement with clay is clear. Angelina Torrente is a prolific painter with repetitive motifs. Her "cats" are boxy and humanoid, with bold stripes. To some, they may be childish, but her authoritative use of color and line seem professional. Oddly, she sometimes adds "Get a Job" to her paintings. Because they receive SSI payments, they can’t actually earn a living with their art, but it is sold at New Visions Gallery in Country Club Plaza, and they get a cut, to spend as they wish.

* * *

It’s not in the least "odd" that someone who is disabled adds "get a job" to paintings. I can’t even begin to count how many times I’ve been told to "just get a job" by people who think that the only problem is that I haven’t tried hard enough.

The goal of most disabled people is to get a job. But the goal of most businesses is to keep expenses to a minimum. If hiring a disabled person is going to increase their insurance cost, they’re not interested. I’ve had potential employers tell me to my face "you’re an accident waiting to happen", and other disabled people have reported hearing the same thing as an excuse not to hire them.

I’ve even applied to organizations that help the disabled get jobs. One told me I had the wrong disability, they only help the mentally retarded, not the physically disabled. Another sent me a letter that boiled down to "good luck getting anyone to hire someone as impaired as you are." That’s when I stopped wasting my limited funds on stamps; if even they wouldn’t hire me, then no one will. Even the people who make a career of placing the disabled in jobs told me to give up hope.

Yet, according to the judge deciding whether I get Disability benefits or not, I could get a job if I only tried harder. He’s convinced that people would be beating down my door trying to hire someone with my qualifications and experience, if I’d only send out some applications. And, in fact, when I was sending out applications, I got nearly every interview I applied for. The problem was, when I showed up for the interview, so did my symptoms; it was apparent to the employer that I was not a healthy person, and the interviews focused primarily on my obvious disabilities and not on my abilities. Let’s be realistic, no one is going to hire someone who admits that she’s only able to do a fraction of the work of the other candidates for the job. It doesn’t matter how much experience and how good her qualifications – unlike "of counsel" lawyers (rainmakers), paralegals are not hired to rest on their laurels, they’re hired to work hard 8+ hours a day. Some days, you don’t get a chance to sit down ... much less lie down before you pass out or take a 3-hour nap to have the energy to get through the afternoon.

The problem is not that disabled people need to be told "get a job" but that an employer needs to be told "you must hire him/her". And, in the opinion of a former State Voc Rehab placement counselor, they couldn’t find a placement for me because I’m not well enough to work.

My SSDI checks – if I ever get them – will be less than a minimum wage paycheck. I’d like nothing better than to get a job (with medical insurance!) but the reality is, no one wants to hire someone who can only work 6-10 hours a week and can’t tell them in advance what days she’ll be well enough to come in.

And the same goes for most disabled people. They would love to get a job with good medical insurance, but something about each disability makes employers wonder if they can do the job as well as a non-disabled person, and even though it’s illegal to discriminate against someone because they have a disability, employers will find other reasons to hire someone else. No two résumés are exactly alike, and they’ll find something on the other person’s that differentiates her from you: you may never need to speak Chinese on the job, but it’s something she has that you don’t that allows them to say that she was the better candidate. (Because, you never know, some day they might get a client who only speaks Chinese.)

Surviving (or not) on Minimum Wage

Surviving (or Not) on Minimum Wage

If people cannot survive on minimum wage, then how are they expected to survive on disability benefits, which are even less?!

In addition to all the things the young, healthy stereotypical minimum wage worker pays for, disabled people need to pay for all manner of medical care (you can’t get Medicaid till you’ve been on SSDI for two years), prescriptions (which I’m told Medicaid doesn’t cover), and personal assistance (I need a house cleaner, and I’m not allowed to drive due to uncontrolled fainting spells so I also need help with errands). Some people complain about the fact that our local bus fare has gone up to $2 (and is going up again); they don’t realize that Paratransit costs even more per ride.

The last I heard, our local waiting list for subsidized housing is ten years long. That’s no help for someone who is disabled and unable to work NOW; if you ask among the homeless population, you’ll learn that a lot of them are disabled and living in the streets because rent – even shared – is more than they can afford from their disability checks.

My late best friend, who was disabled after only a few years in the work force, was getting about $300 a month; another gets only $645 a month and tells me that she would only get $10 a month in food stamps which is not worth the wear and tear on her body to stand in line at the welfare office to apply. Like me, neither of them had the benefit of a husband to help with the bills that their disability check doesn’t cover. One was blessed with a mother who had enough money to pay her rent; the other has lost her parents and thus begs and borrows from friends and relatives every month.

Even my SSDI check, if I ever get it, would be less than a full-time minimum wage paycheck, and I worked for 30 years, most of it near the Social Security tax cut-off, which means my check is about as big as it’s gonna get for anyone. When I first sucked up my pride and applied 8 years ago, I did the math, and the check was about $200 less than my essential monthly bills; it wasn’t enough to make ends meet, but it would slow the drain on my savings account so it would be that much longer before I had to ask friends and relatives for help. At this point, everything having gone up substantially except the amount of SSDI I’d be getting, I’m afraid to do the math and find out how much the shortfall would be.

If you’re believing the talk show hosts who rant about people too lazy to work living the high life on SSDI, you’d better do some research into how much you’d be getting, and figure out if you’d be able to make ends meet on that pittance. Unless you have a husband with a really good job, or are independently wealthy, my guess is you can’t. can tell you how much you’d be getting each month if you became disabled today.

Yes, I have a friend on SSDI who goes on an annual winter vacation to somewhere warm ... because her mother pays for it rather than have her suffer extreme pain in the cold. I have a friend on SSDI who goes to expensive concerts ... because friends pay for her tickets in return for favors she does for them throughout the year. Those things aren’t in the budget if your only household income comes from SSDI.

More common is a local lady I met at a craft fair. Knowing how long these items took to make, I was stunned by the low prices on them: barely more than the cost of the kit to make them. She acknowledged that her goal was simply to break even. Several years earlier, someone had given her a $50 gift certificate to Michaels, and she used that to start her "business". If she put a higher price on her crafts, she wouldn’t sell them, and wouldn’t be able to afford more craft supplies to entertain herself for the next year. She loves to craft and can’t afford the supplies from her SSDI checks, so she sells for break-even prices only because it’s preferable to not being able to do any stitching at all.