continued disability

[tj]

I have been positive for 23 years and on disability for 11 years.  At the time I qualified for disability I was a treatment failure my numbers were going south I had severe neuropathy and by all statistics should have been long gone by now, but since I'm writing this I am not.  New and experimental meds have now made me undetectable.  Today I got the form from my insurance company to fill out for continued disability.  It is a bit scary.  I have considered returning to work in my field as a physician but I have not kept up with the times and my few subtle inquires were met with skepticism about hiring.  I can stretch the truth on the form and probably remain qualified but each time I get these I wonder when the axe will fall.  Anyone in a similar situation and what have you done about it.

[BT65]

Tj, welcome to the forums.  I'm not on the disability you're on; I'm on SSDI, since '94.  So, unfortunately, I really can't comment on your situation.  I just wanted to say welcome and I hope to hear more from you!
  Luv,
Betty

[rondrond]

hey tj,

I don't understand all these disability programs...am in the 'filing for and on hold department'..

but I wanted to welcome you to the forums.

You live in New Orleans? I came out in New Orleans..

ronnie

[Miss Philicia]

I assume he's referring to a private insurance policy for long term disability -- and this probably supplements his SSDI (?)  As far as I know the private policies are more difficult to maintain than the SSDI once your health improves.  tj, if I were you I'd probably do a search here for the word "disability" -- I recall there being a person or two who work in this field and are knowledgeable but that they don't particularly post very often.  Perhaps if you locate them you can send them a private message.

I see you live in New Orleans so maybe you might wish to touch base with someone at a local ASO.

[Peter Staley]

TJ -- welcome to our forums!

I also have no experience with private disability, but was on SSD for many years.  As far as returning to the work force, it was a very challenging step for me at the time, emotionally, but I'm really glad I did it.

Looking forward to getting to know you here!

Peter Staley
Founder
AIDSmeds.com

[Jeff G]

Welcome , TJ

[AlanBama]

Hi tj, I never had a 'private' disability plan, only Social Security disability, which I have been on since April 1995 (wow that's a long time ago!).   I went back to work part-time in 98, and have worked part time earning up to the maximum allowed by Soc Sec.   I am currently "under review" by them, and nervous as hell about it.

In 2001, I did attempt to go back to work "full time" and give up Social Security.   I was successful for 10 months....but a combination of factors prompted me to re-invoke my SSD, and I remain on it today.

If you feel well enough, and think you could earn a good living (with benefits!)
I would say "go for it".   I did, and I would again if the right opportunity presented itself.   The thing for me is, I'm an accountant, and there's basically no such thing as a 40-hour work week anymore.   They expect so much more.
I'm just not physically up to it (nor mentally for that matter).   I have applied for State jobs in both Alabama and Georgia (the only place I know that does actually work 40 hr weeks with no overtime).   No luck, as hiring is tight, jobs are at a premium.   You pretty much have to "know someone" to get your foot in the door, and I don't.

Being on SSD with Medicare as my only insurance is certainly no fun, but I have it better than many of our members who receive minimal monthly payments.

I hope that someone with some 'experience' in this area will give you some good advice.

hugs, Alan

[chipsir]

I also am new (as of today) so am just saying welcome

[allanq]

tj,

Welcome to the forums.

My situation is similar to yours. We're even the same age. I have been positive for 23 years and have been on disability for 13 years. I'm on SSDI and also have an LTD policy from my last employer. The LTD policy requires annual recertification.

Even though my condition has improved since the time I initially went on disability, there is no way I could work a regular full-time job. My doctor has been very good about filling out the form each year, and I have not had a problem in maintaining my LTD coverage. For the past few years, it seems that the LTD insurer has been requiring less documentation. Two years ago they stopped asking for copies of my doctor's notes, and this year, all they required was a statement from me. Nevertheless, I still get anxious until I hear back that I have been recertified.

After a 13-year absence, and having recently turned 60, it would be just about impossible for me to get a job in the field in which I was working (information technology). If I had to re-enter the workforce, I'd have to find some other line of work. I have no idea what that could be.

I don't really have any helpful advice for you. Just wanted to let you know that there are others in the same situation as you.

Allan

[federico]

Hi TJ,
I am an Internist in a very similar situation, on private and Social Security disability since 2000, for the last two years, since I stared a new regimen, I am feeling very well and have thought of going back to practice, I never stop reading, doing CME, going to medical conferences etc. but looking at the way that practicing medicine is going, the high stress we have to live with that can be detrimental to our health, made me decide to stay away from it, keep myself healthy and help people in different ways. Though I missed my practice.
Regarding being concern every year when I have to take the disability form to my primary care, yes I am, but as far as you claim you are no completely recover and the doctor is willing to cooperate with, you they will not  prove it otherwise.
Your friend and colleague,
FA

[OneTampa]

Welcome to the forum TJ.

My work is in the medical certification field and can be very stressful and challenging.  I am now going into my 23rd year HIV+ and although I have never been on disability (my company has long and short term disability), I have requested to telecommute from home two days a week. To my surprise, my request was granted. The added stress of the daily commute (not to mention the gas prices) was getting to be a bit much for me. 

I wish you the best of luck in your efforts.

Take care.

[konkrypton]

  I have considered returning to work in my field as a physician but I have not kept up with the times and my few subtle inquires were met with skepticism about hiring.

Boy, I understand where you're coming from there!  Hi, I'm new here also, my name's Kevin.  I am/was a computer programmer by trade, another profession where keeping current means the difference between getting a job or not. 

I filed for (and got) Social Security disability in '93 and then (stupidly) went on their work trial program in '97, finally ceasing to get checks in '98. At the time I was on Crixivan and was feeling much better than I had been.

When things got worse (pacreatitis attacks, diabetes, depression etc.), I re-filed for disability in '05 and was denied, so I filed an appeal.  I waited until April of this year for a hearing, and am still waiting on the result.  The backlog of cases here in Kansas City caused them to fly in a judge from Tucson, AZ, who didn't seem to know anything about AIDS medicine; he questioned whether a nurse practitioner can prescribe meds! (they can in every state, and can prescribe narcotics in all but 3 states).

Here in KC the health care system in the 80's was so overburdened with AIDS cases that NP's started seeing AIDS patients and in some places that's still the case.

So if my disability is denied, I'm in the same boat, having to consider looking for a job that I'm no longer qualified for (IMHO).  What does one do?

Kevin

[rondrond]

Boy, I understand where you're coming from there!  Hi, I'm new here also, my name's Kevin.  I am/was a computer programmer by trade, another profession where keeping current means the difference between getting a job or not. 

I filed for (and got) Social Security disability in '93 and then (stupidly) went on their work trial program in '97, finally ceasing to get checks in '98. At the time I was on Crixivan and was feeling much better than I had been.

When things got worse (pacreatitis attacks, diabetes, depression etc.), I re-filed for disability in '05 and was denied, so I filed an appeal.  I waited until April of this year for a hearing, and am still waiting on the result.  The backlog of cases here in Kansas City caused them to fly in a judge from Tucson, AZ, who didn't seem to know anything about AIDS medicine; he questioned whether a nurse practitioner can prescribe meds! (they can in every state, and can prescribe narcotics in all but 3 states).

Here in KC the health care system in the 80's was so overburdened with AIDS cases that NP's started seeing AIDS patients and in some places that's still the case.

So if my disability is denied, I'm in the same boat, having to consider looking for a job that I'm no longer qualified for (IMHO).  What does one do?

Kevin

Hi Kevin,

Welcome to the forums. I too am waiting for a hearing before a 'Disability Judge"....has already been a year and have been told by Binder and Binder that it could take up to another two years. What does one do?

ronnie

[Surviving]

well, if the private insurance declines you, then you have a right to apply for federal ssd.   in fact you should begin the process now because it will take a while for your forms to be reviewed.   i think the process simply begins by filling out a multipage green form that asks basic questions, like listing all your stomach symptoms, how your feel and how you cope, etc....

they are experts in reading between the lines and analyzing your remarks.

however, if you are doing ok now and have little symptoms to show, then you may as well wait for your private insurance company to end your benefits and medicines.   at that time your symptoms will reappear and justify your fillings for federal ssd.   i think that while the ssd is in review, you will be qualified for ssi.   but these two processes/benefits depend on how long you have worked all your life and perhaps may not be enough for you to survive on. 

i think the local ss office can print out your work history, amounts and perhaps tell you how much you might be entitled to if your ss claim is approved.

just some thoughts for consideration....

[TimmerInBigD]

tj,

I just went through a harrowing experience with my LTD insurance carrier in which they first notified me that I needed to send them my medical records for the past year from ALL my doctors.  The reason given was a review of my status to determine if I still qualified for the life insurance policy covering me as long as I receive LTD from my previous employer until my 65th birthday (in 63 months).  I failed to understand the underlying meaning of this review so I really wasn't concerned if my life insurance was canceled or not, which it was.  However, I then got a notice that my status was going to be reviewed to determine if I had improved enough to go back to work in any capacity.  This really got my attention because, like you, I've got chronic neuropathy (12+ years) plus chronic fatigue and sleep apnea, and there's no way I can go back to work and show up for a job every day.  I've been disabled for 6 1/2 years and have been + for almost 17 years.  There's not much hope for me to go back to work and earn enough to cover the $4,000 a month I need to pay for the 19 prescriptions I take.

What you need to do IMMEDIATELY is to talk to a lawyer.  You may have anywhere from 90 to 180 days to appeal a negative decision made by your insurance company, but the key here is that you want to stop the review BEFORE they cut off your monthly payments. In Dallas, we have the Legal Hospice, a non-profit service that assists people with terminal illnesses at no charge, a major significance for someone on SSDI and LTD.  If you live in New Orleans, there's a great support network for HIV+ individuals so you should be able to find an organization listed in the local phone book.  Any HIV organization you reach should be able to point you in the right direction since they're all interconnected.

After I talked to an attorney, he called the insurance company and spoke to the person who reviewed my life insurance coverage (based in Nebraska) and the person who was reviewing my LTD (based in SC).  He asked both to send him copies of all materials they were reviewing and wanted to know the current status of the review.  It took about three phone calls from my attorney over three weeks before the insurance company finally sent me a letter informing me that my "annual review" had been completed and I was still classified as totally disabled.  This was the first time in six years that I'd been aware of an annual review of this nature.  In the past, I had to submit a form about my daily activities and health problems along with a report from my primary doctor once a quarter, then it was changed to twice a year, but I've never been asked to submit records from all my doctors.

My attorney has had three other cases like mine from the same insurance company this year, and he said there's probably scores more because many insurance companies are trying to cut their costs so they are "reviewing" anyone who's shown a marked improvement, such as gone from detectable to undetectable, and/or had a positive jump in CD4 counts.  During these reviews, any comments such as "patient is doing better," "doesn't have as much pain," or "didn't complain about lack of energy" are being taken out of context.  He said that when the economy goes south, many insurance companies will look for anyone who shows improved health, regardless of the patient's overall prognosis.  Anyone who doesn't respond to these reviews -- and there are many who just throw up their hands -- will lose their benefits, whether justified or not.

I'm glad I got an attorney to represent me because I know I couldn't have done as much as he could.  I also think that when an attorney calls, the insurance company tends to back off from further action.

Good luck, tj -- hope this was in time to be of some help.

[Jeffreyj]

TJ, I have to agree with Timmer here. Most definitely get a lawyer and fast.
I have been poz for 24 years and I was receiving both LTD from both SDI, and my private insurance from work. Everthing was going OK. For 4 years I was receiving both with no problem. Until   this year, that is.
Without my knowledge, they hired a detective. They filmed me driving to my DR and a few other minor events. Based on this video, they told me i am fit to return to work. I also suffer from  and fatigue and chronic pain, and about 6 other things.
They stopped my pay without warning. So i am in the process of hiring a lawyer, which has not been easy to find one that will take the case. Good luck to you.  Fight it, don't just give in. Best of luck!

[smart_fun_guy]

Hi,

I've been on disability since 2000 - combined SSDI & LTD from Unum (the largest disability insurer in the country).

In 2002, Unum terminated my benefits, claiming that my condition had "stabilized".  While I was appealing this decision, 60 Minutes did an expose on the company.  The following week my benefits were reinstated.

During the appeal process, I started logging my daily symptoms (diarrhea, fatigue, and sleep problems) that make it arguably impossible for me to commit to a regular work schedule.  From an attorney I learned that -- if my case ever went to court -- the judge would basically review Unum's file on me, which at that time included all my doctor's records.  So I started submitting my daily log of symptoms to my doctor at each appointment to be included in my medical record.  This was an important way to get around the insurer's rules about "self-reported" symptoms -- if they are in my medical record, it seems that they are not simply "self-reported".

Over the intervening years, my daily log has been part of my medical records, which Unum requested during the annual review of my case.  I also make a point at each doctor appointment to reiterate that I continue to experience chronic and unpredictable diarrhea, fatigue, and sleep problems.

Last year I was surprised when Unum did not request any medical records as part of their review -- simply a statement from me and a form filled out by my doctor.  All along, it has seemed that my doctor's corroboration of my inability to work has been crucial and perhaps the most important piece of evidence.

Since then, due to some computer crashes, I haven't maintained the log consistently, but I know I could start it up again anytime.  It was incredibly tedious to write and to read -- essentially a reiteration of the same symptoms day after day -- but I think it's been an important tool in maintaining my LTD status. 

Having lived through having my benefits temporarily terminated with no warning, I live in a constant state of apprehension of this happening again.  I've heard of insurers taking photos of people going about their daily business and working in the yard as ways of demonstrating that someone is capable of working.  I also have a friend whose insurer several years ago ended up negotiating a settlement to terminate his benefits, which he accepted because he believed they were not going to stop trying to get him off their rolls.

Evidence seems to indicate that the size of one's income may play a role in a company's efforts to terminate benefits.  Unlike my friend who received a settlement, my income from Unum is relatively low.  I also believe that they have changed their business practices since the 60 Minutes coverage. 

The basic fact of the matter is that one cannot be too safe when dealing with one's disability insurer.  I'd encourage anyone on disability or interested in obtaining disability to maintain a daily log of their symptoms.  In fact, when I started doing this, I found that my symptoms were much more persistent and serious than I had previously realized.

I also encourage you to be meticulously careful regarding what info is provided to the insurer, as they will use any evidence to try to demonstrate that we are capable of working.  Another friend of mine lost his disability benefits because someone raved too much about what great volunteer work he did....

I hope this is helpful.  Good luck!

[lipoenvy]

Very nerve-racking, to have a long-term disability insurance review.

My LTD company does have my doctor confirm my disability every year.

I have been HIV+ about 26 years, on disability for 13.  Mostly my LTD company has not been adversarial about payment, although they sent a private investigator to interview me when I was considering going back to work full time.

I realized after trying in 2005 that I was not up for full-time work.  I have ended up working part-time while disabled.

I agree completely with the above advice about getting legal help and giving your doctor detailed documentation of your daily symptoms.  If you don't feel you're at the stage where a lawyer is appropriate, maybe get the advice of a case worker at an ASO.

When my ex was filling out his disability paperwork, I [as someone who knew the applicant well] filled out a supplemental questionnaire detailing my observations.  When he read my form, giving my take on his deteriorating memory, poor concentration, frequent mental confusion, lack of stamina, etc., he said, "Well, you don't have to exaggerate quite so much!"  He was rather taken aback when I informed him that I wasn't exaggerating at all. 

He himself had raised exaggeration to an art form.  I remember the time...

But I digress.

lipoenvy

[patriq4u2]

Aloha all you pozitive people!
I joined the AIDSMEDS.com forums a long time ago and haven't kept up with posting etc. But now I found you guys again and realize that I have some questions that maybe someone out here can help answer.
I retired on disability under the Civil Service Retirement System from the United States Postal Service (CSRS and USPS) in late 1995. I have been poz since at least 1986 and an AIDS diagnosis (PCP) in 1994.
My question has to do with going back to work for either the USPS or some other US Government agency. I understand that since I am now 60 plus years old that my disability retirement is now a permanent retirement and no longer considered "disability" retirement. I am not sure exactly what that means but... A question that I have is about any downside to going back to work in regard to either increasing or decreasing my monthly retirement benefit. I don't want to go back to work for a couple years only to find out that I have screwed up my pension and it is now only half what it was previously! And I don't really want to talk to the people at the Office of Personnel Management (OPM) since that would probably take more than a lifetime to find someone there who knows what I need to know! And if I were to return to work for the Feds, would I have to be covered under Federal Employees Retirement System (FERS) or would I be able to continue under the CSRS retirement system?
As it is right now, since I retired under the CSRS and am NOT covered under Social Security, I do not have the income restrictions that most people have. I can earn pretty much as much as I want and there will be no reductions to my current CSRS pension.
When I retired previously I opted to convert my FEGLI policy (Federal Employee Group Life Insurance) to a private policy (through John Hancock Life Insurance Company) and since I had a life expectancy of less than 18 months, I did an accelerated death benefit on that policy. For all intents and purposes as far as John Hancock is concerned, they paid out a life insurance policy on me and therefore, I must be deceased. (Ask me about the time I received a post card from John Hancock attempting to contact previous policy holders in regard to a class action lawsuit addressed to: "To the representatives of the estate of Patriq, deceased." I am one of a very few people who was able to see my own obituary!
And now another question. If I were to return to work for the Federal Government (that is if they will have me...) and I can sign up for FEGLI while I am working, is there anything that prevents me from converting to a private policy when I discontinue working for the Feds? And how long must I work in order to convert to a private policy? Bear in mind that I will be going back to work when I have already reached an age of probably 61 or 62. My understanding is that the FEGLI is convertible in full even if I haven't worked the full five years that usually apply to people who are not otherwise qualified for retirement. And does anyone know of people who successfully do viatical settlements in the current HIV/AIDS milieu? Given the fact that I have already outlived almost everyone of my contemporaries who were dealing with this same disease, does anyone know what the viatical business would consider in my circumstances? I realize that I have dodged a very dangerous bullet already but considering that my chances for surviving more than about ten years are very slim, would anyone know how I might find any information regarding viatical settlements for someone in my situation?

I realize that this is a very long and involved request and believe me, I have sought answers in several places already but no one at any of the ASO's that I have contacted are knowledgeable about CSRS disability retirement and the questions that I have raised above. If anyone can suggest somewhere for me to gather this information I would be forever indebted to you! HELP!

[lipoenvy]

I retired on disability under the Civil Service Retirement System from the United States Postal Service (CSRS and USPS) in late 1995.

My question has to do with going back to work for either the USPS or some other US Government agency.

Wow!  Your questions seem to require some highly specialized knowledge.  I can't imagine that anyone but a disability or tax lawyer could give you the answers you are looking for.  No doubt you've found what there is to be found through Google (searching for, say, "legal help federal disability csrs").  And legal advice is usually expensive, unless your state has something like Volunteer Attorneys for People With AIDS.

Social Security is arcane enough for me!  Good luck!

lipoenvy

[BT65]

I agree with Lipoenvy. I think a disability lawyer would be the person to talk to.  I really have no idea about any of your question (sorry).  Good luck.

[allopathicholistic]

1.
Wow SFG, incredible inspirational discipline on your part. Thanks for sharing.

So I started submitting my daily log of symptoms to my doctor at each appointment to be included in my medical record.  This was an important way to get around the insurer's rules about "self-reported" symptoms -- if they are in my medical record, it seems that they are not simply "self-reported".

Over the intervening years, my daily log has been part of my medical records, which Unum requested during the annual review of my case.  I also make a point at each doctor appointment to reiterate that I continue to experience chronic and unpredictable diarrhea, fatigue, and sleep problems.

Last year I was surprised when Unum did not request any medical records as part of their review -- simply a statement from me and a form filled out by my doctor.  All along, it has seemed that my doctor's corroboration of my inability to work has been crucial and perhaps the most important piece of evidence.

Since then, due to some computer crashes, I haven't maintained the log consistently, but I know I could start it up again anytime.  It was incredibly tedious to write and to read -- essentially a reiteration of the same symptoms day after day -- but I think it's been an important tool in maintaining my LTD status. 

http://forums.poz.com/index.php?topic=21795.msg285509#msg285509



2.
Hey Ronnie, here in NY State a disability hearing judge is called an ALJ (Administrative Law Judge). As far as the question of what to do while waiting, that's pretty much the granddaddy of all SSDI questions. I had to beg for help from family.

I too am waiting for a hearing before a 'Disability Judge"....has already been a year and have been told by Binder and Binder that it could take up to another two years. What does one do?

ronnie

http://forums.poz.com/index.php?topic=21795.msg282685#msg282685

[bearby]

Well  Tj welcome to the world  beyond life ( such as it is ).
 I also like all the others hear I am a long term survivor also .
Diagnosed as poz in  late 1989  went to a diagnosis of aids in  late 2000 ( OK I was using coke to  beat the band and of course not bothering to take care of my self  is how I managed to get to this status ) .
 I too worried like many others about returning to the world of the working stiffs and did so with a modicum of of disbelief at my being able to work full time .
 Well  getting better was my down fall because I didn't know the rules of the game I was playing with the SSA  and got caught in the middle of the melee .
 It took me  three months to get my ssdi back with  out the aide of a lawyer because as some one else said the Dr's notes make  a lot of difference espically if you have your own notes added to your chart(s) .
 I know that by having done this is was my saving grace to get my ssd back in three months and also getting all the money they had  " held back since I was able to work full time ( which I was not because  I still suffered a lot of pain from neuropathy ( but then that's where  my id Dr came to my rescue )."
 Well  it was like  winning a lottery when I got that call  from one of the SSA people telling me that my ssd was reinstated because I had proven myself as  " continued with  disability diagnosis of aids ".
 ( it sure was nice to have managers that knew of my " disability " and care enough to provide me with any  thing I needed to comply with what I was resquested to file and or fill out  andreturn to the SSA .
 Therefore I concour that you should never take any thing at it's face value but continue to stand up and FIGHT FIGHT FIGHT until  you achieve your goal ( which  of course n this case is with your ltd insurer because they are going to deny you benefits to get more money into the pockets of whom ever  ! )

[Graywolf]

I havew been poz since 1985 and went on disabilty in 2005 due to degenerative neuromuscular spinal problems from pinched nerves and azt and zerit my doc submitted that as pimary cause with hiv, inabikity to tolerate meds, fatigue and depression as supporting

I was appoved immediately by both private ltd insurer and ssdi, anddEvery 6 months i get a call form the
bean counter case worker at pvt insrurer askling all sorts of questions (medical social worker at my clinic told me to be very careful what i tell them) also tons of forms have to be filled out by both me and my doctor. I will be coming up on 3 years in pvt disability in january at which point they totally reevaluate my case with even stricter rules, if i can wipe my own ass i can work.

The insurer does send out paparrazi to covertly check up on me, as if i'll be sky diving, bungi jumping of mountain climbing soon. The medical social worker told me a funny story about my pvt ltd insurer. The company sent a big fat package, pile 8x10 photos and a dossier, filing civil and criminal fraud charges against the doctor and patient, photos of a guy dancing at teadance in ptown, wind surfing, and they actually folowed him into teh dunes including pictures of him hacing sex with another man.  When the doctor received the report, it was not even one of his patients, they were following the wrong guy. All charges were dropped and the patient resumed his payments.

My condition has worsened a lot since then, been off all hiv meds for 3 years and 4 months, my last labs were t's 722 and v/l < 75 after all thiso time but had a nasty bout of cellulitis in my arm, and wonder what the next labs will be. i dread having to go back on meds since it's in my record that i cannot tolerate azt, any of the d drugs, viread or abacavir.

SInce I'm 61 my pvt ltd payments wil end when/if i reach 65. at imes i'd rather be dead since i have no support system of family and boston isn't teh easiest place to make friends or find support