Friday, November 30, 2007

You Have to Fill This Form Out


Oh my, whose idea was it to mandate that psychiatrists need to fill out certain forms? I work in a clinic where people often walk in with disability forms. I don't know them, how do I know they're disabled? Maybe my great interventions will cure them and they can go back to work. "But I need the form tomorrow, doc, or I can't get my check." I filled one out the other day, feeling rather pressured-- it was on someone I was seeing for the second time, and the first time she'd sat there angry and hadn't spoken. So I put in my best guess at diagnosis, but you know, they all ask for the dates of disability, with a maximum of 12 months, and how would I know this??? That crystal ball, didn't I leave it in the top drawer? The patient became agitated, she needed the form for tomorrow or she'd lose her check. I had 4 patients who'd shown up simultaneously, and she'd also brought poetry to show me. She was getting agitated, I was telling her the therapist needed to do these forms, she was saying she'd lose her check if she didn't have it by tomorrow (now how can that be and why was that my problem? at 4 pm no less). I scrawled "unclear" for the dates of disability and she was livid. Oy. Maybe I should have just written a year, she was homeless in a shelter and hadn't worked in a zillion, and she had some mental illness where she was angry, irritable, sullen, and refusing to give information one day and effusive with poetry to share on another. I wish I just hadn't felt so cornered.

Oh, but then there's my favorite form the psychiatrist "HAS" to fill out. The payee form. My patient (a homeless woman with multiple medical problems and a fondness for crack cocaine and malt liquor) wants to be her own payee---she doesn't like that her daughter currently doles out the dough.

"You gotta fill the form out," she says.

"I don't do those forms, " I say.

"They say my psychiatrist has to fill the form out."

Whose bright Idea was that, I have no clue if people can manage their money. Plenty of folks I know with psychiatric disorders manage their finances fine. And plenty of folks I know without psychiatric disorders are financial disasters. I don't follow these people around to see how they manage, I see them for 20 minutes in a clinic to ask how their mood is and if they're having and hallucinations or side effects. I suppose if any ever had command auditory hallucinations to turn over their family trust funds to me personally, I might consider it.

"I don't know if you can manage your money I say." She stares at me. "Do you know if I can manage my money? I never said you need a payee in the first place. Go find who ever said you need a payee and have them say you don't."

"My psychiatrist has to fill it out," she insists.

No, your psychiatrist doesn't.

Oh here, read this: CLICK

46 comments:

DrivingMissMolly said...

When I was in grad school a couple of years ago, I asked my shrink (a resident who worked at the university health center)if he would be willing to declare me disabled for school purposes so I could use services from the disability offices of the university. I told him I had looked at the paperwork requirements on the web site for the disability office and HE had to provide documentation. There wasn't a form, he just needed to write a letter. You'd a though I had asked him for a urine sample or something! He was uncooperative at first. I had been seeing him, at this point, for several months, weekly, so he knew me. He didn't want to do paperwork and I didn't want him to do paperwork BUT THERE WAS NOTHING I COULD DO!.

HE had to write the damn letter. It really wasn't THAT complicated. I told him to look at the web site. They wanted, in letter form, my diagnoses on each axis and how my issue could/would/ was affecting me academically.

THAT WAS IT! I even printed out the web site info. Boy was he reluctant, not because he didn't think I needed it, but because he didn't want to do paperwork. I almost decided to ask the health center doc to do it, but the Shrink FINALLY came through.

Thankfully, when I was disabled from work, there was only a one page form (one sided, even!) for my doc to fill out, but I felt bad for that Shrink because my first Resident shrink had moved on at the end of June so I had a new Shrink for July and this was when my disability came up. Luckily, he was able to use my records and communicate with prior Shrink but...

IF THEY SAY WE NEED THE SHRINK TO FILL OUT A FORM WE NEED YOU TO FILL OUT THE FORM! Deal with it!

Of course, I didn't freak out aforementioned shrinks with one hour deadlines or anything like that. I gave them plenty of time and the information they needed and was cooperative with them and they knew me but jeesh.

TRUST ME! IF I DIDN'T NEED THE FORM I WOULDN'T ASK YOU AND IF I COULD, I'D DO ALL OF IT OR AS MUCH OF IT AS I COULD SO AS NOT TO INCONVENIENCE YOU, I WOULD!

I think it is reasonable for your clinic to set a policy about paperwork therein setting time requirements, charges, etc. This patient put you in a tough spot and then was unhelpful! You gotta have a policy. I just had four wisdom teeth removed and my oral surgeon's office had a policy about claim filing that I had to sign. It was made clear that they'd do that as a *courtesy* but I was ultimately responsible. I thought some of the paperwork was worded a bit harshly, but your anecdote makes it apparent why some places feel they need to have these policies and paperwork in place.

Her behavior sounds manipulative. Maybe she figured you'd be in such a harried hurry you'd just sign. She wants control of her money for her drugs, obvy. I know you know better than to let a patient manipulate you. If she wasn't going to get her check she should've come to you earlier. She is already homeless so she knows where there is shelter and where she can get free meals. She does not, however know anyplace that gives away free crack!

Lily

DrivingMissMolly said...

One more thing...

I can't remember why, but I inquired at current Shrink's office about doing paperwork. Their response? "Oh, we have someone that does paperwork and it is $190 an hour."

I didn't need the paperwork THAT badly plus I was APPALLED not just that I would be charged that much, but that MY OWN SHRINK wasn't going to do the paperwork. That means someone else would be reading my file, etc. UGH!!!

When I went in for my next appointment Shrink did say he'd do the letter free, bur I didn't need it anymore or want it anymore or something.

Lily

ClinkShrink said...

This is why I don't like filling out disability forms:

I am not trying to make people disabled. I am trying to keep them "abled". Once you put someone on disability, in my experience, good luck ever getting them productive again. Once they are on disability the constant battle becomes how to maintain a certain level of income without taking the risk of losing one's check. You're creating a ceiling that people have a heck of a time rising above.

I could go on a rant about this, but I'm amazed when a social worker sends me disability papers to fill out and when I look at the chart I see that the inmate/patient is in complete remission and functioning as a cadre worker. It's gotten to the point where an Axis I diagnosis becomes equivalent (in my system) to "getting a check". This is what makes it very difficult for people with psychotic illnesses to wade through the entitlement system---they're fighting upstream with people who don't need/shouldn't be on disability.

It's not just the amount of paperwork. It's also about the ambivalence of potentially making someone worse.

Rach said...

Clink, I couldn't agree with you more!

In addition to the check, however, is also the personal (often more scary) issue of how one will go back to the functional world of working which is often what caused the breakdown in functioning to occur in the first place. But that being said, it's difficult to survive on a disability check forever.

There will forever be people with Axis I illnesses who can't function in the working world, and people with Axis II illnesses who somehow manage to make it through their lives working successfully.

ClinkShrink said...

Well said Rach. I don't get to see enough (or many) of the successful Axis II folks. It's nice to know they exist, like when I get to meet a teenager who behaves, goes to school and stays out of trouble. I have to remind myself they exist sometimes.

DrivingMissMolly said...

Clink....

I have an Axis II DX along with Axis I and other crap. Anyway, the school disability paperwork helped me in that I was able to withdraw after the withdraw date without failing that semester of grad school classes. I was an excellent student the prior semester having made an A and a B in my classes. I did not want the F's I received due to serious mental illness, and that my professors had to give me since I just quit going to school, to slam the door on possibly coming back. That required paperwork and a petition to the dean which was, ultimately, approved. I can come back any time.

Unfortunately, I have not been able to return to grad school, but if applicable, I could have gotten extra time for exams or breaks due to my anxiety. The exam thing didn't apply to me since as a grad student it was all about writing papers and she, (the counselor I was assigned after my disability was determined and 'approved' by committee), said that she could not change those deadlines. I did not get any $$$.

That's one kind of disability.

The work issue was brought to a head due to my "productivity" and attendance issues. I was given a week off and then took time off due to the disability form the doc filled out since I was under psychiatric care. I could take up to 60 days full pay before long term disability kicked in at 60% of my salary. This had nothing to do with social security. Shrink asked me how long I thought I needed to be out because I was "One very sick lady." I took three weeks and came back to work.

Right now I feel pretty good, but most of the time I am very depressed and borderline symptoms get you thinking all wrong and mixedy-up.

I can assure you, Clink, that I work, sometimes go to grad school, don't drink or do illegal drugs or whore myself out. That seems to be the image of the "borderline" but I am not that kind. I think I think like one but I'm very withdrawn from the world. I don't engage in any of the things the world considers fun. I was married 18 years. Every week that I work a full 40 hours is a miracle and I buy myself a little present for it.

I hate my DX but it really explains a lot because I don't seem to have an identity. I am never "in" myself.

I don't want to work. I want to lock myself away from the world so I know what you mean when you say you want to -ABLE people and not Dis-Able. Unfortunately, the world doesn't "get" us, and we, unfortunately don't "get" the world. Physically, verbally and emotionally abused, I am not sure how things work or what is safe or that I am safe, but I can't learn about it if I am disabled in my cave. I learn every day but I don't know what is true and what is real and what I like and that it is OK to like what I like. I don't know who I am, I make it up on the fly.

Lily

Alison Cummins said...

My brother got disability and a subsidised apartment on his discharge from his major hospitalisation for schizophrenia. He’s 23 and has never supported himself.

We all have mixed feelings. Clink-like, we’re concerned that he will work less than he could for fear of being penalised. We worry that if he can be self-supporting he’ll never have the opportunity to discover it.

But we’re also happy to know that he's safe. If he has a bad week and quits his job he won’t end up on the street, frightening people in the homeless shelter again, or fighting with the police and going to jail again.

He’s working part time now, washing dishes three days a week, because the restrictions on working with disability payments have been relaxed. We’re thrilled about that part.

I didn’t apply for welfare when I was really sick and had no money. I didn’t want to lead myself into the temptation of getting by on welfare payments. It worked for me, but I hesitate to extend the same logic to my brother.

Rach said...

BTW, Dinah, what the HECK were you doing up at 3:30 in the morning???

ladyk73 said...

clinkshrink said:

"{I don't get to see enough (or many) of the successful Axis II folks. "
Hello! LOOK HERE!!!!! little old me! LadyAK47!

I have BORDERLINE personality disorder. And bipolar?

I am suffering through Grad School, successful? I don't know.
Maybe not.

I was going to comment about having the social workers doing the disability paperwork (or therapist) for those they feel it is neccessary. As the Doc you probably would have to sign it.

But Clinkshrinked ruined my idea.

I bet the prison social workers do that because felons generally...

CANNOT GET A JOB!

Walmart does not hire felons.

Anyways...

I am going to look at things in only balck and white now....

NeoNurseChic said...

I have always had an interesting situation in terms of disability. My neurologists have repeatedly asked me to go on disability, and I have always refused. I think perhaps their thought is that I might feel better if I wasn't working so hard all the time. They haven't asked me in the past couple of years, but when in college, my former neuro wanted me to take a semester off from school, and then my current neuro wanted me to go on disability for awhile, too.

I am registered disabled in that I have a handicapped parking permit, but not on disability by any means! And what's more, I don't use my handicapped parking except on my bad days.

Last year, I filed for intermittant FMLA. I had forms that I needed the nurse practitioner to fill out, and fortunately she did it for me that day, even though I just asked for them as soon as possible, but seriously no deadline. I try never to wait until the last minute when it comes to forms and documentation! My former neuro had written a letter for me for school so that I wouldn't be penalized for absences, and when I was in nursing school, I met with the top administrators to come up with a list of concessions the school would make for me, including waiving of fees for missed clinicals if the reason I missed was for headache.

I have personally always had very mixed feelings about going on government disability. I will say that in all honestly, I have never met someone with the same set of medical diagnoses that I have who is NOT on disability.... But I think I am better off for working. Sure, work takes a lot out of me and makes me worse in some ways, but it gives me something to focus my energy on instead of my pain and illness. I think that if I was unable to work, I would sit at home and focus on the pain/horrific symptoms all the time, and that wouldn't do anybody any good. I plan to work as long as I am able... My boyfriend feels that when I do get pregnant someday, I'm going to have to stop working for awhile, but even then I would like to keep working as much as possible. The problem will be that I have to come off most of my meds, and especially my methotrexate, before getting pregnant, and I'm not sure I will be very functional off all this stuff. Jason and I jokingly say that I medicate myself to deal with the rest of the world. He thinks that I have the ideal situation since most everyone WANTS the option to medicate themselves to deal with the rest of the world, and I actually have that ability. I personally laugh at that - I hate having to take pills just because my body can't tolerate anything - bright lights, loud sounds...tonight I threw myself into a bad migraine by having to step a foot and a half down off the train platform - somehow I landed hard and it literally felt like my brain slammed against the inside of my skull - I was practically in tears with how badly my head was hurting.

But I persevere somehow. I don't think I'm better than anybody else for not going on disability. I just think that this is what I need to do to survive... There are many times when I wish I didn't have to work because I know it takes so much out of me.... Right now, every night when I come home from work, I'm swollen up like a balloon, and I have even taken photographs of the swelling to show my rheumatologist in case I dont' look like this on my appt day....and it is so exhausting to work a "normal" day and come home feeling like this. But I still think it's better for me to work. I feel priveleged to be able to do that.

Sorry to ramble as usual! I think it's a shame that your patient put you in such a tight bind and then got mad at you. It does sound like she expected you to just sign it since she gave you 0 time to really properly do it. Each time I've needed a form filled out, I've given it to the provider well in advance. But what can ya do?

Take care,
Carrie :)

emilymarguerite said...

i am in a situation right now that is almost exactly the same. i was recently approved for SSI and RSDI, and the judge ordered that i must have a representative payee on account of my substance abuse issues. what he failed to notice, however, is that i have been clean & sober for almost 5 years (he also made a recommendation for me to check into rehab). i called the SSA to see how i would go about becoming my own payee, and they said i had to get a psychiatrist's note saying that i've been clean & sober and am capable of handing my own finances. so i called my caseworker at comm. mental health and she told me that since they don't see me for anything but med checks, i had to get a note from my therapist and bring it in to the doctor and he would fill out a form that they had on file so i could apply to be my own payee.
so anyway, i jumped through hoop #1 (getting letter from therapist) and hoop #2 (taking letter to psychiatrist and explaining situation), and then yesterday i got a phone call from some lady at the SSA saying i had to come in and fill out an application myself.
all i'm saying is, please have patience with people who are wading through the SS bullshit. i have had such a horrible time with them over the past several months... getting payments arranged, settling backpays, and more hoops and more hoops. they're 2 months behind on paying me now, and every time i talk to them, i get a different answer, no matter what i'm asking about! most of the time, the people on the phone are condescending and rude.
my self esteem can't take much more of the SSA!
the system is seriously screwed up.

Dinah said...

Carrie: This is why you are inspiring.

Clink: I wish the system could find a way to let you be rightfully disabled without condemning you a life that becomes a weird void as you can't resume employment for fear of losing that check. I wish there were more services out there to help people reintegrate into the work force and live more productive lives.

Rach: worrying about my kid.

Lily and others: It's not that I mind filling out forms. What I mind is that the system has decided I should know things I can't possibly know and sign my name to them. If the question was simply Does This Person have a Psych Disorder, What is It, and What Treatment are They Getting? That would be one thing. They want me to say if people can manage their money (I have no idea, do they think I watch them get the check, develop a budget and allocate their resources? Seems many people can't manage their money and I don't get any input. I also have no way of knowing if the designated PAYEE can manage their money or has other motives. They want to know if someone can work. How would I know that? I don't follow people from the alarm clock to the job, and it seems to me that the sickest, most depressed, volatile, and even psychotic people I've treated can work, while people with the vaguest of symptoms just can't or don't try. It doesn't seem like it would take a huge amount of psychiatric stability to do a lot of jobs, so the Can You Work question is really something I feel totally unqualified to answer for many patients.

You can get psychiatric disability payments without getting ongoing treatment. Shouldn't we as a society require that people who are receiving government support at least TRY to get better? A different, rant, probably it's own post.

Dr. Smak said...

Primary care gets it's own share of disability forms, equally difficult to fill out rationally. They have lovely questions like "how many hours can the patient sit, stand, walk, per day?" Like you said, there's no way for me to know.

Clearly, some people need disability. But there's a large number of people who are working it. I agree with the comment that disability tends to make people less and less functional as time goes by. I figure I'm not doing anyone who isn't really disabled any favors.

The only disability forms that don't stress me out are the ones on the basis of psychiatric disease. That's because then I can say "You'll need to have your psychiatrist assess you and fill this out."

vera said...

So you wanted that resident to help you 'work' the system, and he wasn't sufficiently indentured to the cause.

Maybe he was thinking
" This clever and intelligent person is in grad school...perhaps he/she is not that disabled", or some such thing.

I know that was my first impulse in response to this needy post...

not his stupidity, or his laziness in response to paperwork.

I was struck by your absolute availability to do constructive and compenstaed work, and the personality impaired driven rant you posted here.

I wonder about the sort of person who decried his reluctant response to an extortive attempt to squeak another year out of the government....

what sort of disability is being claimed here?

"I had been seeing him, at this point, for several months, weekly, so he knew me."

That seems the critical point eh?

vera said...

I guess "another year" was not the right phrase, for the government squeaking thing...

it appears that this poster wants to be declared 'disabled'on psychiatric terms.

Are you habitually impaired with audio or visual hallucinations that interfere with your interpretation of reality? So much so that you can not understand the kindness, good intentions and willingness to accept you into the world of working people? Are you a person so disenfranchised by psychiatric symptoms that you sleep alone on a street corner in spite of the weather?

Or you attached to the idea of being an emotionally ill savant? In grad school, trying to make 'doctors in the making' dance to your need for another bump of cash from the government?

What is your long term goal?

NeoNurseChic said...

Dinah: Thanks... :) I appreciate what you said.

Why worrying about your kid? I hope that everything's okay!

Take care,
Carrie :)

stevebMD said...

Dinah: I agree that being asked to fill out a form (any form) the day before the patient "needs" it is frustrating. But your post addresses a deeper issue. Why do the agencies request (or demand) that the psychiatrist fill out the form in the first place? Well, because the psychiatrist should be the one who knows the patient's level of functioning, who knows how the patient relates with others in a social or work setting, and how the patient manages his/her responsibilities, including work, school, and money. Isn't that what the GAF is all about? (Some sarcasm intended.)

But like you wrote, "I see them for 20 minutes in a clinic to ask how their mood is and if they're having and hallucinations or side effects." Unfortunately, this is what psychiatry has evolved into. Check the symptoms, adjust the meds, out the door. Whether the patient can function in society is less important.

At least clink knows the society his patients are in!

Dinah said...

Stevemd: EXACTLY, the AGENCIES request a psychiatrist fill out the form. They've decided this is their policy, all sorts of agencies decide a psychiatrist has to Determine all sorts of things. Maybe they should hire a psychiatrist to do these things, why should I HAVE to fill out a form (and no, Lily, it's not about the paperwork, I don't mind that aspect), it's about the fact that even with patients I know well, I don't KNOW if they can function. Okay, sometimes I do...patient with repeated hospitalizations, grooming and teeth from hell, easily gets agitated and causes a ruckus in the waiting room, on 5 meds, years of this, tremors from side effects, only meaningful relationship in her life is boyfriend who comes for sex and money. She needs disability. I know this. But I'll mention that a good deal of the many years I've seen her (yes, for 20 minute med checks) she has worked part-time, just enough for a little cash, not enough to lose her check, but I believe she just couldn't do it (she loses a lot of these jobs).

So what about the woman who has bipolar disorder, worked for years, married for 20, owns a house, shops, fixes it up, goes to social events, mania consisted of spending $40K on junk, often depressed, hated her job of years, had some cosmetic surgery, has some real sx: a lot of anxiety (has to take her own sheets to hotels), often feels she can't get up and do things, low mood, no suicide, no psychosis. She was on disability when she came to me (and fortunately has never asked me to fill out forms).

You say I SHOULD know how they function in society. I know what they tell me they do. The forms I get also ask how much weight they can lift, how long they can sit (oh, I just ignore these parts). They want prognosis, who knows? I hear story after story from patients of their formerly hospitalized psychotic relatives who are now off meds working, just fine. I don't have a crystal ball and I don't follow people around to know.

It's also very awkward when I don't agree...this is my patient and my job is to be his advocate and it makes people angry when I won't do something that gets them bucks. No matter how much time I spend with people, I often just don't know if they can work, they've often been unemployed and not trying to get employment for years, and unless they've repeatedly tried and been fired or quit numerous jobs, I just don't know.

I could tell you story after story of very sick people who do work fulltime and I'm convinced their lives are better and fuller than if they lived on the $700/month they'd get from disability.

Please don't take this as thinking I don't think there are people out there who can't work and who should be cared for by society. And I truly don't believe that the tens of thousands of street people are "too lazy" to work, I wish we would give them all access to housing, food, and healthcare (but not cigarettes...what can I say).

My real point of the post was to say that I don't think one agency should mandate that someone from another agency is required to fill out there forms in a way that makes no sense.

I dedicate this post to my children's pediatrician who fills out approximately 8,000 forms a year many of which say it's safe for Johnny to play football, box, fence, jump from airplanes.

Anonymous said...

Neo: If you have a kid(s) then you will probably worry about every real and imagined thing that could possibly be worried about and then some more as well. You will worry about their health, their grades, how they will handle kindergarten, high school, university, how you will pay for it, whether they will get in, whether they should play video games or not and if so what exactly is a Teen rating, who they are with, what on earth they are doing out until ongodly hours, whether the boyfriend or girlfriend will be a nice person or not, if they are really ready to drive even though they have their license, if they eat enough fresh fruit and veg and if they do , what chemicals are they ingesting, whether they will really grow up to hate you in spite of all the sacrifices you have made, whether they make friends or do not and whether they will bend under peer pressure, how they will react when life disappoints them, if they have the sense to always look both ways when crossing the street, whether they are resting and thinking and doing homework in their room or building a bomb. You can be so caught up in your daily activities that the best time to worry is the middle of the night.
If your child has any problems you will have more to worry about but every parent (pretty much with exception of the dads who snore the night away) worries. When a parent does not worry about their kid, that is when someone should really worry. Often the biggest worry is that they will turn out just like you. Deep sigh.

Anonymous said...

Neo: I didn't mean that they will turn out like YOU. You seem like a fine person. I meant that you spend part of the time worrying that you are turning into your parents and then more time worrying that your kids will develop the same familial "nuttiness".

NeoNurseChic said...

Anon: All I meant was I was hoping something wasn't wrong that Dinah was up late worrying about. Of course there are general things that parents, and especially moms, stay up late at night worrying about. Hell, I already worry about things with the kids I do not have yet - and when I've brought up some of these worries to my psychiatrist, he's said we should focus on getting my own life in order before worrying about what will happen when I have kids. (Not exact wording, but I'm not going to say here what it was I was talking about.)

Once one has kids, I don't think they ever sleep soundly again. But in some ways, I can't wait for that. My mom worrying so much has indeed shaped my life in some ways, and I'm trying to ease up to a degree on some of that anxiety both so that I can live my own life and also so that when I have kids, maybe I won't be so unnecessarily fearful. However, I know that I will always worry about my kids and their health and happiness - it's just what moms do. I do hope that my kids are like me in some ways, but I hope they are not like me in some ways, too...."nuttiness" included of course! But mostly I worry that I will pass on to them some of the health issues I have, especially migraine. I realize there are worse things to pass to your kids, but I've had such a bad time with mine that I do fear in advance that my kids might end up with it too. However, I feel that if they do end up with these things, then I know I will at least be knowledgeable enough to help them and to catch it early. For kids that end up stuck with things like migraine or depression or other things, I guess the only benefit is that a parent who has been through these things might catch it earlier and get their child the help they need.

Mostly I hope they don't need that help, but life will bring what life will bring. My worrying about it won't make it not happen, and I'll just have to take it one day at a time.

Anyway - what I meant in the end was that I wanted to make sure Dinah's kid was okay - that nothing bad had happened to keep her up all night.

Take care,
Carrie :)

NeoNurseChic said...

Dinah - On the disability stuff, last night before bed, I opened up Shrink Rap to read updated comments to the post, and Jason read what I had written. He said to me, "If you didn't work, I don't think you'd ever leave the house. You'd just stay in and bum around all day." He's totally right - cuz that's what I do when I have time off. I basically only leave for doctor's appts. And THIS is one of the biggest reasons why I have pushed myself to work.

Not to long ago, when I finally opened up to my mom about some of the stuff my psychiatrist and I are working on, I told her about my concerns that I sleep all the time. One of the things we talked about was that my medicaations have a big part in that. They don't make me drowsy when I am up and at work, but when I don't have anything to do, my body starts to feel tired and I just want to sleep all day. Plus the fatigue from not feeling well in the first place.

Granted, working adds to the fatigue and exhaustion, but it also gets me up and moving and out of the house. I still think that I am better off for working, no matter how it impacts me physically right now. Sure, I don't want to die an early death because I chose to work, but I don't think that'll happen - maybe I won't be able to work for as long as the average Jane, but I'll take what I can get. As long as I'm able to work, it provides some distraction for me and gives me something to get up and direct my energy towards. I'm proud of the work that I do, and that gives me some sense of accomplishment, which makes me feel better. But as with all things, sometimes I just have to take it one day at a time.

I have more to say about what you wrote and how I agree with it, but I don't want to keep ranting on! haha Mostly I feel like I am one person who probably could benefit from taking it a little easier than I do, but I feel like in the end I probably also benefit from working, and so I've chosen to keep at it for now!

Take care,
Carrie :)

NeoNurseChic said...

Clink said..."This is what makes it very difficult for people with psychotic illnesses to wade through the entitlement system---they're fighting upstream with people who don't need/shouldn't be on disability."

I just have to comment on this, from a personal experience. I used to work day/night rotating. Every week I'd rotate to the other shift. Do you think this was good for someone like me? (hypothetical/sarcasm here!) I was having to stay after a night shift until noon to wait around for appts, and was hardly sleeping at all. Let alone the impact of a constantly rotating shift on someone with chronic health problems. The sleep psychiatrist I went to (someone very well-known in his field) told me to basically come back when I wasn't doing shiftwork any longer. I missed quite a few days when doing that rotating business.

So the neuro NP was the one who actually asked me if I could get on a more stable shift. I went about this trying to create the smallest wave of impact possible - I asked if I could work 40 hours day/evening rotation OR do permanent nights at 40 hours OR go to 36 hours (3 12's instead of 2 12's and 2 8's) and rotate days/nights. I was pretty willing to do whatever would cause the fewest problems for the unit. Then I was told that I had to have a letter and the letter, once written, had to go to employee health.

I got the letter from the NP - a very reasonable letter - asking that I be allowed to do day/evening shift. The doctor in employee health treated me like I was a criminal and like I was just trying to get out of my rotating shifts. She acted like I should be punished because I have a health problem. At the end of the appt, I was in tears and saying how it's so hard when you do everything right, but the one time you need an accomodation, you get told that they'll have to find some other job for you to do, and so on. She explained that it was because so many union people tried to get out of the things they h ad to do.

Know what? That's not my fault. I'm sorry there are a lot of people milking the system, but she didn't have to treat me that way. It DEFINITELY makes it harder for those with legitimate problems, though!! The woman treatmed me like I was a criminal all because I had a disability...and then her rationale was that a lot of people try to use things like "migraine" to get out of working so much. Eventually, I was allowed to work day/evening shift, but you should have seen the info she took from me. She said she doubted my ability to even work at all, and she wanted to know the name and number of every single doctor/physical therapist/etc I saw and exactly what medications I was on. I later found out that this is illegal for her to be asking me these things - that she had the letter from the NP explaining that I needed an accomodation made and she is not allowed to ask me for all of the details like that. I gave them to her, but I didn't realize that at the time.

So my rant here is to say that yes, all the people milking the system and using "disabilities" to get out of having to do their job make me sick. They make it so much harder for the rest of us who truly do need help, and that experience was a very upsetting way to learn that.

/rant done!

Take care,
Carrie :)

Anonymous said...

Carrie,

I know that;you were expressing concern. From a parent's perspective it made me laugh a little because I recognize it in myself as I toss and turn and pace and wring my hands in a way I said I NEVER would do (while my husband snores).
I too worry about passing on certain said to be hereditary conditions and I do know we can't keep our kids in a bubble. Then again, I think of all the insane things I did as a kid and if I survived, chances are they will too. I hope.
One of my children asked me just today, "Why is life so hard?" (Exam time.) I didn't have the heart to say it just gets harder.

jcat said...

Ouch, Vera....uncalled for and unjustified. And not what Liliy was saying, either. She does a pretty good job of holding it together.

Sarebear said...

I haven't read any of the replies yet, but just wanted to poke my head up (out of the sand? or snow? It's a high-altitude (sort of) desert, I guess I can take my pick!)

Um, hi!

Forms out the wazzoo, because they hope that we'll all just die of papercuts and go away and not bother them any more. That's mho (my humorous opinion).

There was a form my lawyer whom I dislike the more I think about how perhaps his away from the bench aside with me at the hearing advice was most likely the only way he was going to see any compensation, and yeah, he's s'posed to be not worrying about that, and advocating just for ME, but really, I was in NO psychological state of any kind of appropriate soundness at the time to make the decision I was being asked to make.

Er, oops, sorry for that rant. Anyway, this form the lawyer wanted was for any involved mental health & medical people to fill out. I had my psychologist and family doc fill out, I didn't bother with the psychiatrist I had just started seeing (my first) as he was . . .. well, we know how THAT turned out. Anyway.

It was rather disturbing and upsetting for me to SEE what the docs had marked on these forms, I'll go post one without names or dates on my blog.

NeoNurseChic said...

OK one last comment...

Dinah said..."It's also very awkward when I don't agree...this is my patient and my job is to be his advocate and it makes people angry when I won't do something that gets them bucks."

This doesn't have to do with disability, but I will say something my psychiatrist said to me that might be helpful in these types of situations. He told me that as my doctor, he and I are both on the same side in that he is working with me to help me get better. However, there may be times that we will disagree on what I need, and in those cases, I will just have to trust him in that he is always make a decision with my best interests in mind.

Or it was something like that. Given that I have a lot of issues with SI, you can guess what he was referring to (disclosing things to my family, hospital, etc), but I think his words can be used in a general way for any situation in which a psychiatrist might disagree with their patient. Now, I guess it helps if the patient and psychiatrist are already on good terms - I might have been less receptive of his comment if I didn't know him well or didn't already trust him. However, because I had been working with him for some time when he said this and I had a lot of evidence of how he was working in my best interest already, I really appreciated what he said. It just let me know that no matter what happens, I should trust that he is always working in my best interest - that we are on the same side - we both want me to feel better.

If I put this in terms of disability - say I wanted it and he didn't think I needed it... well, then we're still on the same page. He's still telling me what he thinks is in my best interest - I will feel better if I keep working versus going on disability. So the statement holds true.

However, this is much more difficult if the patient wants disability to get out of working/get extra money and they know darn well they may not need it, and they are just very angry that their psychiatrist won't help them and give them what they want. (Not need...want....) The issue of need is everything here!

Take care,
Carrie :)

jacob said...

I think Dinah has illistrated the problems many people have with Psychiatry today. People (Insurance, other doctors, patients) expect Psychiatrist to know the patient. They are the professionals everyone has relied on in the past to judge behavior, to assess someones global functioning. The problem is, Psychiatry has changed, peoples preceptions of Psychiatry have not. Psychiartist no longer spend time with the patient to be able to do the judging and assessing global functioning. People who have not seen a Psychiatrist have no idea the average appointment is 10 minutes and the only thing being discussed is side effects and different medications. I don't feel it should be up to a Psychiatist in this day and age to be assessing anyones global functioning. It's not fair to the patient and not fair to the disability companies paying these claims. The other problem is people assume it is the patients fault for being on disability. Like Dinah stated in her comment "I hear story after story from patients of their formerly hospitalized psychotic relatives who are now off meds working, just fine." Maybe more and more people should be allowed to go off medications so they can return to the working class.

Dinah said...

If you've read along, you know that I have a psychotherapy practice, that very little of what I do is clinic work with med checks (less than one day a week), and that I know my patients very well. I still don't know if they CAN work. People often come to me while they are unemployed and they express no interest in trying to get employed. Can they work? I don't know. Some of them come to me already on employment and they seem less symptomatic then someone else who works full time.

Forget the time for the visits issue, let's assume I know my patients. Let's assume if someone is extremely symptomatic for a prolonged period of time despite psychotherapy and trials of different medications, and they have been unable to hold a job, that I feel comfortable filling out a disability form. But if someone hasn't tried working in a long while, says they can't, say's they are too depressed (ah, but goes to social functions and keeps all their therapy appointments on time) , how can I KNOW if they can work, and say it's clear they shouldn't work certain jobs, but it seems like hey, they could work at WalMart or at the front desk at an apartment building or taking toll money. People don't want to apply for those jobs, so what differentiates folks who are willing to try, versus those who simply say they are too mentally ill? I'm sounding judgemental, I don't mean to, what I mean to say is that I just don't know who can and who can't work. Look at my old post Salt Mines.

Oh, and I do hate it when people walk in the door for the first visit with disability forms and it does happen.

Sarebear said...

Now that I've read all the comments, I want to reply to something that Dinah said.

The judge actually put in the official decision papers, that I have to keep getting help, although I don't know if he means that just meds thru the iatrist would fill that requirement, or just therapy thru the ologist, or both, or what.

Course, I laughed in a sad way, because the laughable tiny drop of change they're giving me is not enough to even pay the copays for a month of seeing the iatrist once and the ologist 4 times.

So at least in my case, they require that I try to get better, which I'd be doing anyway. If and when I have access to much of anything, altho if my next iatrist appt. goes as badly as the last one, I may begin to wonder if I can ever trust any psychiatrist ever again . . . .

Anonymous said...

What a great point Dinah. It may be that someone is unable to go continue working in a particular job, but can they really not work at all if they are able to get it together for non work purposes and keep their appointments on time and spend a lot of time blogging or responding to blog posts?

As to global functioning, I have been given low scores by some docs because they happen to see me at very bad times and the reality is that this is a snapshot of me only during that bad time. At other times, no one would know that anyone gave a second thought about my global functioning. I am not on disability, have never been and hope never to have to be. I have had to leave work for brief periods. I had to withdraw from school for a time.There are ways back into school. Generally there are workplace policies on leaves of absence. It is true that some people make you feel like a criminal for needing a leave but those people probably did not see you in the hospital. I know a few people who milk the system and collect payments and go on vacations. I know other people who have a really terrible time most of the time but they do whatever it takes. I know others who very much need to be on disabililty and thank goodness it is there for them. These people could not work at Wal-mart or in a toll booth. They might sleep on a grate outside the store or under the bridge that the toll booth sits on top of. They tend to show the least sense of entitlement.
I like to think that there are times when I am able to function well and other times, not so well at all. I don't believe this means that I am disabled. I find it funny that there is such activism on the part of so many people with physical "disabilites" to have the world accept that yes they can and that they are not disabled, but rather differently abled, and this is also apparent among people who have or have had serious psychiatric difficulties while someone else is very happy to work very hard to be declared disabled.

DrivingMissMolly said...
This comment has been removed by the author.
Anonymous said...

DMM,
What has Carrie done to you?

It is a good idea to grow up before you get old. If you were in grad school a few years ago, you better hurry.Don't tell me, you want to be the bloggers' pet and you are worried that Carrie has beat you to it? Unless they have four legs, or two legs and a beak, it doesn't seem the shrinks are looking for more pets. Sorry, but Carrie is inspiring. Why does that get you agitatd?

Nutty said...

I find this interesting, because our system in the UK is so very different. Is there any chance that sometime you could explain your disability money system in more detail?

I have to have different sorts of evidence for the different elements of the money I get. Overall, I think that the Department of Work and Pensions has evidence from myself, my GP, my psychiatrist, my nurse and my family. If there's any doubt, they have their own doctors who can do an assessment.

I don't feel that for me getting public money to support me stops me going back to work because in the UK we have something called Working Tax Credits which are extra payments you can get from HM Revenue and Customs to top up your earnings if you are disabled, to ensure that you earn more when working than you would if you were on benefits.

NeoNurseChic said...

Uhoh - Looks like I've missed something....and perhaps quite glad that I did. I didn't mean for anything that I wrote to offend anyone... My personal views on disability refer to myself and my own personal situation. I don't judge other people for their choices and their needs. I realize that there are conditions and situations that warrant disability, and I even live a life that probably does warrant some slowing down (not disability as I am still able to work somehow - even if my docs have pushed me towards disability at various times), but I have personally chosen to push myself to work. I realize it's not for everyone - and also that not everyone can push themselves to work, no matter how badly they want to. I am lucky that I am able to work, and I thank God that I can do so.

Anyway - whatever it was about, I just wanted to say that I didn't write anything here with the intent to offend or to become anyone's pet! ;)

Take care,
Carrie :)

Roy said...

Good girl.




Seriously, I wasn't sure where that comment came from, either.

Midwife with a Knife said...

nutty: I think that's great. We have a problem here where some people get unemployed, and then need to "get disabled" in order to either stop a frustrating job search (the area of the US that I practice in is hard hit by a recession right now), and it's hard for pregnant women to get jobs to begin with sometimes (especially in the lower-skilled areas).

I don't feel that most pregnancies are a disability. Even complicated ones. There's usually no reason a diabetic pregnant woman can't work, for example. I believe work is good for people, in general. I also don't believe that fraud is good for me.

What I will do is document their work limitations (i.e. no lifting > 20 lbs, needs 15 minute break every 2 hours, no more than 8 hrs a day/40 hrs a week, etc.). This usually annoys my patients because they will still have to go look for jobs to continue to get their unemployment checks.

It's not that I don't sympathize with the woman who has 2 kids and is on unemployement, etc. But I will not say that someone is disabled without a strong medical reason.

Nutty said...

There wouldn't be much point in claiming Incapacity Benefit (earnings replacement if you're sick or disabled) whilst pregnant here in the UK, because you'd get paid more for Maternity Allowance, which is payable from week 26 for 39 weeks.

On the other hand, we have something called Disability Living Allowance, which covers care and mobility needs, and which can be claimed for psychiatric disabilities, and you can get that independently of any other source of income, but maternity wouldn't affect that because the condition has to affect you for more than a year unless it's a terminal condition.

I wonder which culture has the more complicated set of forms to fill in, yours or ours? The various benefits I get come as a collection of six different benefits plus a variety of concessions such as free prescriptions.

Dreaming again said...

I have myasthenia gravis, lupus, fibromyalgia and those are just the first few on my diagnosis list ...

There have been a few added over the years ...hypertention ... cholesterol ..etc have been added as I've aged ...

I recieved a form from SSI 5 days ago ... giving me 10 days from the date on the letter to get a form back into them saying that I was disabled ...from my provider ...

the date ... 7 days before the date I recieved it.

THEY messed up 4 months ago and accidently stopped paying me. They haven't repayed. But I have 3 days to get this information back into them.

My doctor also does not fill these forms out.
So, I actually have 3 days to FIND a doctor who understands that I have these conditions, and will fill them out.

Anonymous said...

I have been dead for over 2 years and I can't find a doctor to fill out the death certificate so that my family can collect the insurance money. Top that.

jcat said...

Anon....so what did you die of? And have you told your family yet?

ClinkShrink said...

I hate it when that happens.

jcat said...

Oh, no! Clink....you mean you're dead too??
This could start a whole new phrase. Never mind 'I see dead people', how about 'I've been reading dead peoples blogs for a whole year'....scary.

Anonymous said...

I died of an irony overdose. I didn't have to tell my family--they told me.

Sarebear said...

I don't know of any anonymice were referring to me at all, in regards to somepeople seeming to be happy at working hard to be labeled disabled . . . . whether or not they were, I want to address it anyway, late though it be in this thread's life.

I haven't thought about the fact that a judge has legally declared me obviously and muchly "disabled" (I forget the legalese, and see, I have to put it in quotes, because I just. can't. go. there. . . . yet . . . . not about me, not about it being me, or how low I've sunk, or or or) But buth the psych "expert" there and the judge, agreed that I was very obviously and to a high degree, disabled.

Do you know, have ANY #$%#%$%ing idea what it is like to sit there, in that room, and hear these things, let along be part of the push behind the process? Part of the start of the process, anyway, it kinda took on a life of it's own . . . . . do you have any bloody idea what it is like, especially for someone who believes to her bones that I am responsible for everything I do or don't do, and that I should rather die than be such a functional, societal, and human failure? Or, as a relative put it last year, a "waste of a life and a human being".

So for me to sit there, and participate in this hearing, heck, every. single. step. before that . . . . . but I was trying for it because I need the money so I can access the help I need to get better, and the hope of that was the only reason I tried, not that I have to justify it to ANYONE.

To sit there and have yourself dissected . . . actually, to learn a few things that happened earlier in the process, during the hearing, like a room of 12 or more state level people who work on SS disability claims, had mocked and ridiculed a sheaf of papers I had painstakingly and with all of my soul poured out everything I could, on a day that I was very manic which I think helped me to just keep going, because I KNEW that the rest of my life rested on filling out these bloody papers and answering their questions. Even at the same time as it was tearing me to pieces, peeling away the blinders of me not seeing or thinking about the difficulties I have, the things that are hard, the fears, phobias, and other things . . . . tearing me apart to be forced to face that, and to force myself to keep writing because that was my only hope of getting better.

it was all mixed up phobia, fear, hate, hope, doubt, determination, resolvedness, denial, and so many more things . . . .

I started bawling just now a couple paragraphs back. I can't even begin to describe how terrible this process was for me, and I've only begun, over a year later, with a recent post, to talk any in detail about it more . . ..

And to hear that my sincerity and 25-33 (then) years of suffering and everything I poured out, was mocked and ridiculed, in part because I am, as every psychiatrist and psychologist I've had has said I'm very intelligent, my first psychiatrist saying I was rather more so than he, and because I was so thorough . . . . I wish I could have raised my hand at the hearing and said, but . . . . when I knew the rest of my life depended on this . . . even if it didn't make a difference, it haunts me that I can't speak back to the people who dismissed me as some sort of a joke. They MOCKED me. They had my LIFE, the WORST of my life, the most embarrassing, the most irresponsible, the absolute darkest things about me in their hands, and they RIDICULED it, and me, and everything.

And I find this out, as I'm sitting there at the hearing, and I'm in total shock when I hear that . . .

Let alone everything else that went on at the hearing, sitting beside someone (the lawer) putting forth in legal and descriptive ways, things and ways about you that make you want to just run and hide under a deep dark place forever.

Anyway.

Want this? Did I eagerly pursue this, eagerly go after this money?

What do YOU think?

I can't imagine anyone in the world who would WANT this.

I could not control myself at the end, when it became clear my hope was gone, and I was wracked with heaving sobs, and horrified that I couldn't stop because I was in court, and I couldn't stop for the longest time, even as we made our way out of the building, to the car, and home.

Who the hell would WANT this?

I haven't thought very much about having been declared disabled, nor the fact that despite that, the hope of money for treatment is gone.

Sarebear said...

With blogger's fairly new feature to have new comments in threads you've commented in emailed to you, whether you later delete the comment or not, it gets sent to those who've clicked that box. So I got the deleted comment.

I am not one to judge, however, so please don't worry about me dmm! I just thought I'd make sure peeps knew.