POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Buckaroo47 on October 12, 2009, 09:15:37 am
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I've been Poz for 15 years now. Needless to say I've gone through a few doctors, clinics and drug studies in that time. I'm now currently living in a small town with one clinic and doctor for HIV patients for this part of the state. My case manager (nurse) of 5 years now is requesting that I fill out a "drug and alcohol assessment" and a "mental health" assessment. This is something that I've never been asked to do in all these years of doctor appointments. I don't drink, do drugs and I gave up smoking years ago. And, as far as my mental health is concerned, I suffer from the moody blues once in awhile but nothing to warrant psych help.
Well, I refused to fill out any of that paperwork. I felt that it was very intrusive into my private life and certainly not warranted. I could understand if I came into my appointments wreaking of alcohol or sobbing and suicidal that they would refer me to a counselor. The counselor would then ask me to fill out this form to asses my condition. My nurse kept harassing me about filling this out, or else they would think that I had something to hide. That infuriated me even more. I'm so damn tired of my private life being chipped away from these Doctors, Case Managers, Clinics, etc..... I finally stood up for myself and put my foot down and said NO!
At this appointment I had a TB skin test done, so I had to run back into the clinic the next day so they could see I wasn't infected. Well, much to my astonishment the person to inspect my arm was the drug/alcohol counselor! At which point she asked me if I wanted to set up an appointment with her. I literally felt like I had just entered the Twilight Zone with a mix of Invasion of the Body Snatchers thrown in. God, did I drink or do drugs without even knowing it? Did some alien take over my body and guzzle down a gallon of Vodka in front of my Doctor? Why are they being so persistent about me doing an assessment?
My question to my fellow HIV'ers is, am I overreacting about this? Has anyone else been requested by their Doctor to fill out these kind assessment paperwork even though you have no history of drug/alcohol abuse or mental health issues?
I'm thinking that this clinic is trying to get more of their HIV patients into seeing their drug and mental health counselors in order to get more Ryan White funding.
I appreciate having these resources available to anybody that needs help in that area. But, is it right to request all of your HIV patients to fill out drug/alcohol and mental health assessment forms just so they can get the funding?
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No--you're NOT overreacting. Yes--you were right to choose to not participate in any assessment you thought you did not need.
Health care is VOLUNTARY.
Sad to say, but as I continue to train HIV care providers and counselors, many of them still see us as junkies, whores, fags etc etc. They almost can't deal with it when a client doesn't need mental health counseling, substance use counseling, housing etc.
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I've been positive for 16 years now and I've also had to fill out those assessments before. You should never feel pressured into filling anything out you don't want to. It's your choice.
I can understand why you wouldn't want to fill them out thou since they are rather personal but, at least for me, it's no biggie and to be quite honest, those assessments depress me! They make me realize what a boring life I live. ;)
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You shouldn't have to fill them out, no. I'm betting they might be getting them filled out for some kind of statistics' sake.
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Why not fill them out and improve the statistics that HIV+ people are not all car wrecks.
Aren't they confidential?
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My question to my fellow HIV'ers is, am I overreacting about this? Has anyone else been requested by their Doctor to fill out these kind assessment paperwork even though you have no history of drug/alcohol abuse or mental health issues?
Hi,
24 years living positive, and I've never been asked to fill out this kind of paper work. I told my doctor up front, that I don't drink( anymore), don't smoke(anymore)or do drugs(anymore . I felt it important that he know that. I had quite a history with all those, a long time ago.
Edited to add a little more.
Ray
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They make me realize what a boring life I live. ;)
;D same thing here
I just moved from OH to a small town in SC and have hooked up with an HIV clinic/ID doc. It sounds just like your situation buckaroo ;) Since these people don't know me from Adam (ahhh, the Southern idioms have come back so quickly and I am sounding more and more like a hick every day ROFL :D), not only have they poked and prodded and drawn a ton of blood to prove what my Doctor in Oh and I already knew about me, but I've had to fill out more forms than I think I ever did in the last 15+ years of being positive in OH.
And all I realized was that I just haven't done much of anything exciting - at least not by their questionnaires. I almost wished I had an alcohol or psych problem so I would feel like one of the "gang". Just almost though - I'm really quite pleased to have not suffered from those problems. The problems I have have been quite enough.
I didn't think twice though about filling out those forms and questionnaires to show that there are "normal" people (albeit homosexual) that get AIDS too. (AIDS - not just for junkies LOL)
Sad to say, but as I continue to train HIV care providers and counselors, many of them still see us as junkies, whores, fags etc etc.
I agree. There's still that undercurrent of stigma. If you're not "queer" then you got HIV by being a "bad" straight person. So though I might count in that M2M sex transmission category, I skew all the numbers that "prove" that only uneducated druggies get infected.
I don't know how long you've been at this clinic Buckaroo; but for me, by filling out those forms the staff learned more about me, and I'm seeing a potential for service starting to appear. In an area where HIV has been spreading out from an under-educated population with alcoholic and drug abuse problems and now moving out into the wider population, the clinic case management staff has already started to "feel me out" about using my story and help to give talks about prevention. Though I have mentioned that I would rather volunteer and assist with Hospice care to try to repay the wonderful support I had received while losing two long-term partners, if doors are opening for me to try to help others from getting this disease, I'm happy to do my part. Losing those partners made me believe in taking the opportunity when it presents itself, because life is just too short to look a gift horse in the mouth.
Perhaps by filling out those forms, and by not having any of the problems, you may find doors opening for you to help serve and work to persuade and prevent other "normal" people from acquiring this disease. ;)
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Mecch, you've been asked repeatedly to not post in the LTS'ers forum. Please stop! Thank you.
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yes Mecch, especially comments like the ones you made. rude rude rude
modified to add
Buckaroo, keep sticking up for yourself!
sorry someones comments aggravated me and I got side tracked.
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Mecch, are you going to have to be given a time out before you start paying attention to where you're posting? This is getting old. ::)
Ann
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Mecch asked me to convey his apology :-[
though I believe I said, in my long-winded ancedotal way, pretty much the same thing ;)
I would also like to add by saying to Buckaroo that perhaps you should just ask your case worker about why they are so adamant about getting this paperwork. Did the rules governing the clinic change? Is this some paperwork that all the other clients have filled out and was just missing in your case history? And especially, is your medical treatment dependent (right or wrongly) on this paperwork?
(look out. LOL here comes another one of my stories now to illustrate my thoughts. :D ;D )
I remember back when I first had to help Randy get onto welfare and disability back in the early 90s. I swore then and there after those trials and tribulations that it was just like "selling your soul to the devil" and that I would never, ever do it.
Until I got PCP and was dying. ;) :D
Being sick and at death's door will make you do a lot of things to stay alive. So I filled out all their forms, answered all their stupid legal questions that keeps them getting their funding, and lo and behold I got treatment, meds, and I stayed alive. (the ohio welfare office has copied my birth certificate 14 times over the years to comply with federal regulations - though that document truly never changes once you're born. I complained a few times but if I didn't produce it once a year they would have stopped my medical card and food stamp benefits)
By the time I had to have Jim hospitalized just back in Mar 2008, I knew the drill and impressed the heck out of several social workers as I had over half the forms ready when they first appeared. You'll do a lot and answer a lot of inane questions when you're trying to keep your partner from dying.
Though I'm not dying now, I just moved to this rural part of SC and I really would like to make sure that I keep getting treatment and benefits. As I'm very poor living on disability, I really have very little choice but to fill out their requested forms - if I want their assistance that is. ;) It's all well and good to know that it's your right to not answer, just as it might be the agency's right to not provide assistance without those answers. ;) Definitely a catch-22; but as I said, once you sell your soul to the devil, you belong to him. LOL :D
As it is, though I thought I had moved with every possible needed document so that I could make my transfer out of Oh and in SC easy, I will have to completely fill out new forms again if I'm ever going to get a medical card or food stamps, as Ohio screwed up my paperwork by NOT closing out my case, the deadlines have passed down here, and I'll have to start all over again. And that means that one morning, I'll need to drive 20 miles to sit outside in the dark at 5am waiting for the food stamp office to open at 8am if I want to get their assistance.
heck, I just have to drive 700 miles and it took 16 hours to return to Ohio this weekend. SC won't give me food stamp benefits since Ohio did for Sept and Oct as my case wasn't closed out. Food stamp benefits do not cross state lines (though you'll find that exceptions are made at the borders of two states) so if I wanted my $355 dollars worth of food for those months I had to go back to Ohio. I got to see a double rainbow, beautiful fall foliage in the mountains, stopped at a walmart just 1/4 of a mile into Ohio and went shopping, saw a beautiful red sunset as I passed through my old home state of NC and finally returned home with 53 bags of food. ;D
Was that a stupid drive to get federal benefits doled out by the states? Sure; but rules are rules. However, for every $1 I spent in gas and meals on this trip, I returned with $3 in food, which should last me until Decemeber or January. ;D That's good too. Since I'm still waiting for OH to close my case at the end of Oct, I probably won't see my food stamp benefits in SC until late Nov or early Dec (not only are there rules, but I also know how slow the system moves)
Sometimes case workers (just like us little peons caught in the system) have no choice but to follow inane, stupid federal and state guidelines. I still suggest that you simply, politely ask this case manager why this information is needed. They might have no choice in the matter either. It may be the only "legal" way they can continue providing you with benefits and/or treatment. Or as you mentioned, it may be the only way for them to continue receiving funding which could also impact whether they could continue treating you or not.
with all the regulations and rules nowadays and how often the paper-pushers change the rules, it's hard to stay on top of what else the devil wants from you - because you know selling your soul is never the end of the deal with him. ROFL
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I just wanted to add that more detailed assessments are becoming much more the norm. What used to be a 4 page assessment and 1 page care plan for the ASO I work with has now, at the behest of the state and feds, turned into a combined 25 page assessment and care plan.
Still, I don't hound people to answer personal questions. I do ask them because they are required. If the person chooses not to answer them, that is up to them.
For the most part, they are the usual medical stuff and, I might add, the questions about substance abuse and mental health are standard these days.
So, are those involving sexual proclivities.
It seems to go with the territory these days.
HUGS,
Mark
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Thanks to all who've responded to my thread and giving me more insight into this subject. I think I have just become super careful about my privacy since moving into a small community. Just to let you know, I did receive an apology from my case worker (nurse) about her actions concerning the assessments. I suppose other patients most have complained about her since I did not. According to her they will now inform the patient that filling out these assessments is voluntary. If you chose not to fill out the questionnaires it will not affect treatment in any way. So, I guess we all are still learning how to make our way through the process of treating and living with HIV/AIDS. Thanks again...Mark
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It's good to hear that you had an acceptable outcome ;)
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hi buckeroo
This is from a U.K. view
Forms are often linked to an on -going assessment which will have bearing on funding.
At my clinic (central London teaching Hospital )there are often graduate researchers gathering info for there work.
My personal view on this is that no one has the right to insist on me filling in a form, in practice I will if my health is up to it as there is always plenty off waiting to do.
I make great use off N/A
Also I comment on the form, especially if its the sort that that tries to reduce the human experience to-- on a scale off 1 to 5 are you slightly sad that you are possably in the last months off your life.....
The important issue is I have control off what I write and wether I do.
Michael