Disability Benefits ...

[EarthMother]

As the thread grew on this issue surrounding Work ... a suggestion was made (thanks mkoven) that perhaps a new thread on Disability Benefits would be helpful to some of us on the boards.

So if you have wisdom to share on how things work in your neck of the woods, your personal experiences with long term, short term, government or private insurance ... please feel free to post note, share a gripe, offer a prayer or an insight.

As for me, as I mentioned before I worked for the same employer for over 20 years. During that time I took several Short Term Disability leaves when I would hit a POTS hole, usually for 2-4 months at a time. In between disability leaves, my employer made informal agreements with me about doing work from home for portions of the day I was too ill to come into the office. My husband and I would chart my time in the office so that we could gage if I was improving or in a decline over the long haul. In August 2007 after at least 9 months of steady decline (missed meetings, more and more time telecommuting from home) I went out once again on SDI. But unfortunately this time my health continued to go down hill and I was forced to leave me career for good.

After six months I applied for Long Term Disability benefits with my employer's Insurance carrier ... which I later find is one of the worst companies to deal with in terms of denied benifits and legal actions. The amount of paper work was incredible. I am fortunate that my husband is able to be my advocate on these matters. Unfortunately due to my declining health, he was forced to negotiate an early retirement with his employer as well, so that he could stay at home with me. Despite records from my Doctor of 8 years stating I had Chronic Fatigue Syndrom, POTS and Hashimoto Thyroid all of which resulted in my being perminantly disabled, the insurance carrier refused to accept any of it. They insisted that I go and see one of their Independant Medical Examiners ... who was almost an hour away from my home. Fact is, I've had such a hard time over the past year, that I simply don't travel any more. My therapist has been helping me to get to even my LOCAL Doctor appointments for the last year. When I explained this to the insurance company they insisted on all of my "mental health" charts as well. My therapist complied. She is also an RN in addition to an MFT, and in her statements and diagnsis she stated that I had anxiety disorder AS A RESULT of PHYSICAl ILLNESS.

Well this was just the ticket my insurance company was looking for. The fact that I had panic disorder or agoraphobia meant that they could claim this was my PRIMARY illness -- I guess my inability to stand is secondary!-- and because I was now front and foremost mentally ill they could pay me for only 24 months which is the extent of their disability clause for any mental condition.

So that's fun. I will either have to get an attorney or travel really far to see their IMEs and more likely both. Meanwhile I have a Holter monitor report from my cardio and volumes from my primary doctor that confirm POTS.

I also filed last week for Social Security Disability. My husband and I filled out two sections on line and then sent in a book load of medical charts, lab results and our own notes and data by paper mail.

So now its a waiting game ... after working for over two decades with insurance that I thought would cover me should my condition ever get worse and I be unable to work ... the reality is you never what will happen.

So that's my story in a nutshell ... at least I have my sense of humor!

[Ernie]

Hi,

I live in Canada and there it is the Provincial government that pays long term benefits.

I was self employed and since the doctors had always told me that I was healthy even if I kept telling them that I had a problem I never took personal insurance because it is way way expensive. So I just have a small pension that I cannot live with all alone.

Right now, it's been 5 years so the government is re-evaluating if I am still disaabled. It started in June and I won't get an answer before January to March.

[mkoven]

I've had two stretches of being unable to work-- neither from pots, both from eds complications-- severe pain after back surgery that prevented being upright for almost a year, and another time, when I blew out my back and both ankles, so I could neither sit or stand.

Both times I was lucky that I had accumulated enough sick days to cover me. That is a benefit through my employer, a public university. We get 25 days of sick days a year and can carry over 12 from year to year. If you donate one of your days to a pool, you can get another 36. and we petitioned the provost for me to get the rest of a semester covered. The good thing about sick pay, as opposed to disability, is that there was no change in my health insurance. If I'd had to be out any longer, I would have needed disability, which, as many know, is a bureaucratic nightmare. And there would have been changes to my health insurance.

I've been fortunate to be able to return to work. I got ADA status (amercians with disabilities) to make certain things easier. I also got extra time on my tenure clock for medical reasons. I also had great occupational and physical therapists who helped me to brainstorm creatively about what I would need to keep working. this isn't always possible, but sometimes the same tasks can be done in unconventional ways, and it takes some thinking outside the box.

For several years, once I was able to do my job, we hired a student to be my "personal assistant." So that I wouldn't be so dependent on my spouse, this person would drive me around, run errands for me, take me to doctors, do chores. Sometimes I needed this person more. as I felt better, just five hours or so a week.

I haven't looked into disability for a while, but I probably should, just so I understand the process better, if it ever comes to that. I think we should all prepare, even if it's never needed.

another thing we did was sell our house and move into a two bedroom accessible rental. Again, this was because of my joints rather than pots, but it made a lot of things easier.

We continue to have struggles when my spouse goes out of town. It's hard for me to be alone for days at a time and do everything for myself. I don't drive. My mohter used to be able to come out, but she's getting older and has her own health issues. When I got out of the hospital this summer there was talk about my going into a "skilled nursing facility." I'm really glad it didn't come to that. I've done that once before and it was a miserable experience, though I'm sure there's variability. I guess the one thing that's characterized my health issues is VARIABILITY. I've had periods from pots and joints where I've been completely unable to function, and then been able to get much better and resume many of my activities. I want to be prepared, but I try not to think too far ahead, because I've never been able to predict the course of my health issues. I just try to take care of myself the best I can right now, and have plans for now and a couple steps ahead. But I should learn more about disability. I'm pretty sure I now have a bunch of sick days accumulated again...

[Heiferly]

I am one of the people who had sudden onset of POTS, and I had issues with episodes of paralysis on top of it, so the severity was pretty bad right off the bat. I tried to return to work after it started, but realized pretty quickly that it wasn't going to be sustainable as I was being sent home from work early often and missing work because I was blacked out or paralyzed on my apartment floor. I stopped working and my three-month savings buffer lasted four months and was gone; I applied for SSDI, SSI, food stamps, medicaid, cash assistance, about 10 different Rx assistance programs . . . if there was an application form, I filled it out just in case I might qualify. I think I started filling things out before I had even drained my finances and enough time had passed to submit them, which was just as well because it was a *mountain* of paperwork and all of that stuff moves SLOWLY.

It would be an understatement to say I have been very fortunate. I was approved for SSDI, food stamps, and medicaid the first time around. (Rx assistance programs helped bridge the gap until medicaid kicked in, but medicaid will go retroactive to the date that SSDI sets as your date of disability. SSDI set mine as the actual date I first became ill. This is a saving grace for medical bills, though the SSDI checks won't go back and pay retroactively.) My condition has worsened over time, and I am now getting approved for home health services through a medicaid waiver: a visiting nurse, nurse's aide, occupational therapy, physical therapy, aquatic therapy, and a shower chair.

There are several things that have worked to my advantage in getting assistance:

1. When filling out forms, I attach extra typewritten pages to answer questions AT LENGTH rather than in the small blanks given (esp. on SS disability application) to give vivid examples of my situation to make it real for the person reading it. This is not a common thing that the person evaluating the application can understand just from reading a diagnosis. I figured it was my job to make them see what I was going through and how it kept me from being able to do my job OR ANY OTHER JOB, or even function normally in life. This is no time to be proud or keep your confidentiality. Tell it like it is in the goriest most demeaning details.

2. I am single and I had no assets (house, stocks, etc.) except for a car, and I rapidly drained what little savings I had such that I qualified for programs of financial need, such as medicaid and food stamps.

3. By the time I applied, I did not have a diagnosis but all of my doctors/specialists were through one of the nation's top research university hospital systems. To put it bluntly, I truly believe that who your doctor is can make a big difference. I imagine Mayo Clinic and Johns Hopkins docs (of course with the caveat that they agree that you are disabled) compose very impressive letters on their patients' behalves. They are, after all, the best of the best. Whereas a small town doctor who sees many less patients, encounters social security less frequently, got a less impressive education, has much less continuing education . . . well, he may just not know how to write things up in the way that Social Security responds to them. KNOW THAT YOU HAVE AT LEAST ONE TRULY EXCELLENT DOCTOR WHO IS REALLY GOING TO GO TO BAT FOR YOU AND TALK TO THEM ABOUT IT! There is nothing wrong with telling your doctors that you are applying for disability and asking them if they are willing to help you. Talk to them about what is keeping you from working. They don't see you at work or at home--they won't know what's going on if you don't tell them and give them specific examples!

4. When I was working, I worked as a medicaid provider. I already knew their language, at least to some extent. It really pays to do your homework. Appeals are a royal pain in the arse. Know what you are applying for and what the standards for approval and denial are. This information can generally be found online for government programs. Google is your friend. Make sure that what you send in demonstrates that you meet the standard for approval without a doubt. Make sure you have communicated to your doctor how you meet that standard. For disability, frequently there will be a list of diseases (which doesn't include POTS or other dys) or a stipulation that it must be something "equivalent" to one of those diseases. If you have POTS, for example, you could make sure that your doc is aware of the journal article that compared the quality of life in POTS to that of congestive heart failure. It would be very helpful for your doctor to cite this in his communication with SS! Another buzz word in disability is "activities of daily living." You don't necessarily want to use their jargon, you just want to know what activities they are looking for so you can address these things when you apply, if it has been effected by your illness in some way.

I hope that helps people who are applying. I would be happy to answer questions.

[dsdmom]

EarthMother,

I don't know who your long term disability carrier is, but I have the same clause in mine - that if it is based on MENTAL HEALTH they only will pay 24 months for a lifetime. I was approved based on PTSD/depression - although I was struggling w/ my new illness, I did not yet have a diagnosis. My 24 months is coming up early next year and I just received a notice from them reminding me of that fact....However, it did also mention that unless there was ALSO a physical component, my $$ will stop. Maybe once your 24 months is coming to an end your secondary may become your primary??

I don't know - I mean I know these people don't like paying. They call me a lot but never leave a message - I'm sure to check in. When I do talk to them they ask how I'm doing - like they really care. They just want to hear me say "fine" so they can say that I am ok!!!

Anyway, I hope that in your case the company will have to take your physical symptoms into account after 24 months.