[posted by dinah]
I'm stealing a thought from Shiny Happy Person (and I do hope she is), the psychiatrist who blogs at Trick-cycling for Beginners.
Why, when so many of my patients are adamant that they do not have an illness, are they so keen to demand Disability Living Allowance, Incapacity Benefit, and free bus passes for those with a disability?
I've been perplexed for years about the relationship between mental illness and the ability to work. It's not that I don't think people with disabling mental illness shouldn't get benefits: I do. What I don't get is how we know when people can't work versus when they won't work, and I haven't observed a great correlation between severity of symptoms and ability to work. So, I see patients who are on disability for Depression or Bipolar Disorder who, on mental status exam, report that their mood is euthymic, their sleep and appetite normal, there are no psychotic symptoms, the medicines are working, and they are busy with a number of activities. Now, granted, these are chronic and intermittent illnesses; some of these patients have been hospitalized, all have had episodes of severe illness, but they also have periods of stability. This is not to be a comment that they should be working, just an observation.
On the flip side, some of the absolute sickest patients I have seen have worked despite their illnesses. One woman's anxiety clamped down her life such that she could tolerate no social events outside her home at all. She couldn't go to a movie or a restaurant (funny, she did have a pet but this was years ago, in the era before Emotional Support Animals, but she also had a family so if they couldn't get her out in public, would a Duck have helped??? Okay, I'm straying here, forgive me). Still, she got to work every day. And the happy ending to that story is that when SSRI's came out, her social life resumed.
The most depressed patient I have ever seen lived with constant misery, non-stop suicidal ideation, extreme guilt, constant self-criticism, and the only symptom that really responded to medication was her extreme irritability and sleeplessness. Still, this was a medical professional who repeatedly won awards and raised a family.
The most psychotic patient I have ever treated spent years in a state hospital. She is plagued by delusions and hallucinations, her symptoms dictate her every move. The symptoms here are so extreme and so unique that confidentiality concerns limit my ability to fully discuss this case, or even to distort it. In the years I've treated her, she has always had a job....well, almost, there was one brief period where she was too ill to get to work and she's left a job or two for reasons that probably haven't related to reality. A trained professional, she's at times taken positions well-beneath her abilities just to pay the bills. I would recommend she apply for disability in a flash, but it's never come up.
And finally, I once treated a man who had never worked. He'd been receiving psychiatric care since he was 10, lived with his father, never finished school despite a documented IQ in the 150 range. He struggled after the father's death, living in his dilapidated childhood home, intermittently doing chores or running errands for neighbors. He told me he didn't believe he could maintain a job at Burger King, that it might fly for a while, but he had periods where he just couldn't do anything. With decades of failures behind him, no stories of success, I believed him. The Disability folks did not, and his final appeal was denied. And so, when I see a patient who left work a few years ago, whose symptoms are now controlled with medication, who says they can't work and gets regular payments, I'm often left wondering.
Just my thoughts, no answers here, and I'm sure some of you will have great references to post, I won't steal your thunder.
In CA, prison inmates with "serious" mental disorders are (supposedly) automatically qualified to receive SSI. I filed 18 applications in May, and you can imagine the amount of time in front of the computer. Some patients are obviously impaired to a point demanding assistance and intervention; there is the apocryphal story of the grossly impaired inmate who sat at the bus stop for 3 days following release before anyone noticed. Likewise, I have had patients with extensive work histories despite mental disorders. Nevertheless, I am continuously surprised by the seemingly asymptomatic "pre- qualified" patients seeking assistance. I joked with a colleague that if the last patient's we saw were qualified, then we were qualified.
You must make the distinction between Disability and SSI. To qualify for SSI, you need never have worked. In fact, nearly half the individuals I have seen have never worked ever (in CA, an inmate with a mental health designation is not allowed to work in prison). In a forensic setting, Hare's PCL-R assessment considers the "parasitic lifestyle" of psychopathy, and the word "malingering" comes to mind. I read a court report this week where the individual was described as "never having worked or received SSI, but was self-sustaining." Right. The effort some patients make to qualify for approximately $850 per month is truly remarkable.
My personal conflict is when I consider what I am "abetting." CA estimates that greater than 70% of these patients have co-morbid "substance related disorders." It makes me wonder if the drinks are on me (us).
I was talking about Disability payments.
None of the patients I'm referring about are malingering, in the sense of sociopathically faking it for the bucks. Since they are my patients, they are individuals who are showing up for treatment and seem invested in going with the psychiatric program. They take their meds and want to get better, though they often have had awful jobs and feel the stress of working is too much (and maybe it is) and they just don't want to try. It's just a funny discrepancy when severely symptomatic patients hold down jobs and those who are no longer actively symptomatic don't.
Finally, since we're here, I have at times seen patients who get Disability (SSDI) for mental disorders who are not in active, on-going treatment. As a tax-payer, I'd like to think they people with psychiatric illness are at least required to try to get better before they are issued a pay check. Proving that treatment has failed to make someone employable, however, does not seem to be a requirement for compensation.
Here is the rub. In Texas, those on disability are penalized for working and their benefits are discontinued. I have a friend who hasn't worked in more than 10 years related to Epstien Barr. Is she a slacker? no. She doesn't want to lose her disability. While she may be fine for period of time she frequently relapses and is unable to work. It was such a herculean task to receive the disability pay she is unwilling to jeopordize losing her benefits. The system in Texas punishes those who might like to work by revoking benefits. What a shame!
It's interesting, in prison my patients really would like to work in order to earn good time credits for early release. Unfortunately, like foo's system, sometimes they are denied cadre work for no other reason than the fact that they are on psych meds. They are also denied certain alternatives to incarceration like home monitor, some outpatient supervision programs and boot camp.
Then there are inmates who would like to be psych patients, but aren't. Just a couple weeks ago an inmate confessed that he came down to see me because: "They told me if I got a diagnosis here I could get a check when I get released."
I'm on CPP (Canadian disability) for physical "we can't control that" reasons. I can do the housework, at least most days I can.
I'd like to work part time. It's just not possible due to the way the disability is structured. So, I do the house-husband thing, which is not so bad.
I think there needs to be a lot of re-thinking in how we put people on disability and who we put there. For me, getting on disability was realatively easy ... just sit and wait two years while the lawyer did his work. We knew before starting that we'd win on appeal. My lawyer, who does nothing but disability work, said that about a third of his cases fall into the same category as mine, ones where he knew fullwell that the case would be accepted on appeal.
There are many cases, like mine, that win when the patient appears before a person: Cases where the paperwork is rejected and the person accepted. So why does the system refuse so many cases that they know fullwell will be accepted on appeal? It seems to be a waste of money.
The paperwork involved in disability seems to be outrageous. There must be a better way of handling the information. My paperwork set fills a two cubic foot plastic file box, that's a LOT of paper.
As for whether someone should or should not be on disability? Oi Vei! What a tangled mess that is!
It's clear that there are people on disability who do not belong there and people not on disability who should be. I've no idea how to fix it. I'm sure there is a common sense way, I just don't know what that way is.
I think just holding the conversation may be the start down the long path towards finding an answer.
I need to do some more posts on SSDi, the process (which has almost killed me more than once), and other related issues.
For myself, I know I tried OVER and OVER to work, and it got to the point where well, I tried to kill myself in part (there were so many reasons involved, lol!) because "what kind of a person can't hold a job; what kind of a person keeps failing no matter how hard they try".
Last time I worked was January of 1997 . . . I actually might not post much about the working issue, as . . . that is a . . . well, it's a scary subject, intense, one that I have NOT settled within myself. Better stop thinking about it or I'll go dark and horrible places.
SO. Disability. I've had a lawyer for about a year, whom I need to call, as I'm hopefully due for a hearing soon. See, I say hopefully because this is my only hope for being able to pay for treatment; for being able to GET treatment.
Yes, I'm currently in treatment, but that's an exceptional situation that I need to be discreet about, that is something most everyone would marvel at and be surprised by. It's not something that usually happens.
I know there's a limit to how much I can impose on someone's generosity, and even though nothing has been spoken as to, you'd better be able to pay for it yourself by X date, still, I am loathe to continue to receive the longer it goes on. I also fear, that the longer it goes on, the closer I am to it being "cut off" and then, well, that also would be Bad.
Anyway, I was reluctant to apply for Disability, but I was told that it is actually disability insurance, that everyone pays into; it's not just social security for older people, it is also disability insurance.
The process is hell, by the way.
I am also afraid that mine will be one of the 10% of cases that get this far that STILL get denied (as 90% of the cases that get this far get approved.)
Anyway, Disability is my only hope. My ONLY hope. There is no such thing as Hope, without it.
I struggle with my own feelings of, what kind of a person depends on handouts . . . but they keep telling me it's disability insurance that I paid for, not a handout . . .
I MUST get the SSDi, and not SSI (or a mixture of the two would be fine) as the SSDi qualifies me for Medicare, which would help as well.
HELL is not near enough to describe the process, which I've been meaning to post in detail about on my blog.
So now you probably think I'm a beggar, bum, lazy, etc. (mind-reading distortion!) but what else can I do?
So I like the insights from different perspectives.
Over time, I've observed that people who continue to work seem to do better; they lead fuller lives. Obviously this is just a correlation, and not clearly cause and effect, as perhaps the skills it takes to lead a full life are the same ones it takes to maintain employment, and not simply that working is good for you. Work, however, does do a couple of good things: I think the money helps. In Maryland, SSDI payments are closer to $700 while SSI payments maybe more like $500 (please don't quote me on this, but if I do become disabled, I may move next door to foofoo). Once the rent, food, cigs, medication copays are made, there's not much left over for the fun stuff, and if one doesn't have a working spouse, someone in the sidelines helping, or an inheritance, it's a spartan existence with not much room for the finer or funner things in life. Someone trying to get by on this is left to watch TV all day, and probably not even (oh, to miss those Reality TV shows where one might get vicarious psychotherapy...). The other good things work does is impart structure in a life, --though Golfers seem to find their own structure and meaning with out it-- and work sometimes includes access to a social life and some sense of self-esteem building and identity.
Clearly, though, there are folks who just can't work. I would contend that anyone sleeping in a cardboard box in Port Authority is probably not faking it, is not simply lazy, and likely deserves benefits.
Sadly, the system does perpetuate disability...once you're on it your stuck: it's too risky to try because you lose your benefits and if you don't make it, you've drowned yourself.
So if I can be politically incorrect, as a physician, tax-payer, and non-smoker, I would wish that SSDI benefits couldn't be used to purchase cigarettes. They eat up a large percentage of the payee's income and induce more and expensive illnesses. I don't begrudge anyone the pursuit of pleasure, but this addiction is a particularly expensive one and when someone tells me they don't have the money for their $1/script medicaid copay, but they're nursing along their $7/day cigarette habit...oh, some moments are hard.
I'll get off my soap box. Did anyone see where I put my Diet Coke?
Patients are liars, period.
What I don't get is how we know when people can't work versus when they won't work.
If only there was some way to get at the truth!
Meanwhile, keep churning!
The more you fixate the healthier you are! Just don't entertain any thoughts around "empathic failure", a construct that has nothing to do with a mental health professional. Tax thieving patients, yes, that's our purview.
No, really, pretty harsh words. I don't see a universal, all-on-disability-are-cheats, flavor in this thread (as you sarcastically imply, fp). Just an acknowledgment that some *do* milk the system (like all systems),
while others milk the the-man-labels-and-controls-us system.
Hmm, I think I missed something here. I'm not so worried about people faking it to cheat the system; as above, the system makes is so difficult and requires so much documentation. What I believe happens is that someone has an episode of mental illness, they stop working because they Can't, but often they incorporate the stress of that particular job or difficult circumstances there (abusive boss, too many demands, etc) into their schema of what went wrong, what caused their episode, and once the symptoms resolve (and this may take a very long time) they become fearful of working, or see themselves as too fragile. So it's not so much a situation of Faking it, but more that people truely believe they can't work without giving it repeated tries at different types of jobs and the system is set up to perpetuate this state of helplessness. And it's not that I don't believe there are Fakers out there, but those people haven't happened to be my patients...most people I see are committed to treatment and long for a better life and I do think that in some circumstances being on Disability holds them back, both financially and emotionally.
Right Dinah it's their schema.
"What I don't get is how we know when people can't work versus when they won't work."
You're saying the patient can't be believed, but rather than admit you're calling them liars, you ponder faulty cognition and the implication for error correction.
Is their unfair tax-paying soda-addicted schema taking away their smokes too?
No I hadn't seen that before Spiritual EM, thanks for the link, it was beautiful. Don't wanna derail this important thread here, so I'm coming over to your blog to make my introductions right now, I've been reading you here and there for some time.
While I certainly won't hold you to your musings, Dinah, but with $850 a month, you couldn't live next door to me! But, by all means, feel free to call or write once you've settled in your SRO.
Regarding whether and when we're throwing money away with state support, I found this Gladwell/New Yorker piece thoughtful and interesting. The theme, if I recall correctly, is that epidemiologically or societally it may be most efficient to divert money away from programs providing broad basal assistance and lavish comprehensive care and assistance to the reprobates.
The relationship between symptomaticity and ability to work seems like an impossible rats nest of a question to me (not a psychiatrist). First, it seems to assume that how and where one spends one's time has little to do with the kind or extremity of symptoms one shows or reports in therapy. That just seems groundless. Second, or alternatively, the question seems to assume that "able to work" represents the same standard for every individual with symptom profile "X"--whatever the career, the workplace, the work schedule that individual has to juxtapose against unemployment. I would think both of these things make all the difference, and there's no point to go binning data and looking for trends (which in a rough way must have happened in dinah's mind for her to conclude there is no trend among the patients she's encountered) until one takes such things into account--at least in some schematized way. Third, how much of the time are we talking about a choice between unemployment and work that a person has experienced, and how often are we talking about work that a person must imagine and indeed may even have to overcome obstacles to become employed in? I can imagine the distinction mattering little or not at all to some psychological types and some range of career options (e.g. it's gonna be some burger place), but for some people a whole bunch. Why do unhappy grad students sometimes spend a decade writing and/or rewriting their dissertations while sitting in cafes and living off their spouses? Simplisitically I suppose it could be said they don't want to flip burgers, but fear so much that they will fail if they look for a professorship that the unconsciously dawdle or sabotage their progress on their theses. Do we count such a person "able to work"? Are they even "working"? Is writing a novel "working"? Maybe if I were a psychotherapist I would appreciate a more natural and narrower way to construe the question dinah posted, which would give me something I could sink my teeth into, but as I construe the issue it just seems hopelessly broad. Though interesting to muse over.
The Gladwell/New Yorker piece linked about by Murky Thoughts is GREAT, I highly recommend it, though I could have done with out the diversion about vehicle emissions testing! Thanks so much for that.-- Dinah
I got on GAU when I was 18.5 after spending ages 16-18 hospitalized. When I turned 18 and they let me out, I went through six jobs in six months and then gave up. I went to college on SSI dropped out of college and went to trade school then worked for six years, but got fired many times. Then another episode hit so I went on SSDI again. Got dx with schizoaffective that time. Episode mellowed some so I started college again (20 years after dropping out) Hoping maybe to work when I graduated. But in 2007 I came up for my 3 year review and in spite of my mental health records going back to 1982 they sent the State Patrol to investigate my case for disability fraud. When the State Patrol or CDIU comes in you always lose.
Remember this was an ongoing disability review, not an initial application. I lost and got my bennies and health insurance cut off with just two weeks notice.
This in spite of over 20 years of documentation and that SSDI's own pdoc said I was disabled.
No doctors in my county took medicare so I only had the word of a P.A. for my medical proof. So I was sent to the SS pdoc for an exam.
Having my life support cut off sent me into a MAJOR episode. Maybe the worst episode of my life. When I learned that the police had been to my hood to spy on me it brought back my paranoia send me into mania and desotroyed my life. I appealed and won but it took a year and the damage done was immense and in the end the cost to taxpayers was much higher than if I had just been left alone.
Now I have finished college but have not recovered from this episode so I have no fantasy of going back to work. So no savings for the tax payers there. Also I broke my wrist while manic and needed expensive surgery paid for by Medicare so no savings for the tax payers there either. What was done to me is a crime.
Still, I might try working again someday but I fear that the stress will send me into another episode.
http://www.voanews.com/Khmer/archive/2006-12/2006-12-07-voa3.cfm if you don't believe someone who has a psychotic dx when they say they were spied on..
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