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My wife was just awarded SSDI

Messages
53
Location
Oregon
I am so thrilled to announce that my wife has just been awarded SSDI benefits after a year long process! She had severe CFS, along with several other comorbidities, and has been completely bed ridden for over a year. I want to send encouragement to all those out there who are either in the process or are considering it; people with CFS can and do receive SSDI. If anyone is interested in our experience and strategies, please feel free to private message. Wishing you all the best!
 
Messages
13,774
Congratulations on reducing some uncertainty/financial hardship, and sorry to hear that your wife's life is so restricted. Best of luck for the future.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Congratulations on winning the award! I've been on SSDI about 20 years and want to give you some brief advice. Social Security may contact you about every three years for a review. It will be done by correspondence and it will be nothing like what you had to go through to get your award. They only drop people if there has been a marked improvement in health.

I recommend that you write down the names, dates and addresses of every doctor or health care provider she sees. They will most certainly ask for at least one year's worth of recent visit history, although I can't recall if they will ask for three year's worth. Trying to remember exact visit dates from long ago can be really taxing unless you keep track of it all on a calendar or document somewhere.

Make a copy of your filled-out review before you mail it in. That's it - you should be good to go.
 

anciendaze

Senior Member
Messages
1,841
We live in a twisted world if a year is considered fast (while living in financial limbo/poverty!)
Most such cases are not pushed through by the victim, but by close relatives. Those without such support face the Catch-22 of not being sick enough to qualify if they are able to deal with the bureaucracy themselves.
 

out2lunch

Senior Member
Messages
204
Congratulations on winning the award! I've been on SSDI about 20 years and want to give you some brief advice. Social Security may contact you about every three years for a review. It will be done by correspondence and it will be nothing like what you had to go through to get your award.
That's not completely true.

The process does start out with correspondence and a short questionnaire to fill out about ongoing treatments and any new symptoms or diseases, etc. But about 10% will get the long form questionnaire, which is a bear to fill out. And many times, the SSA rep conducting the CDR (Continuing Disability Review) isn't satisfied with the answers, even if you're regularly seeing doctors. Then you will be sent to specialists for medical and/or psychiatric exam, just like you went through prior to the hearing when appealing the initial denial.

This happened to me last year, about 2.5 years after getting my SSDI. The psych interview was scheduled first, and I failed that so badly that the medical exam was cancelled. I was put on a three year review schedule even though I'll be over 60 when the next one rolls around.

Whatever you do, make sure your wife sees a doctor at least three times a year. And document every single test that's run. Keep results of all tests, and all prescriptions taken. I cannot emphasize this enough. SSA is being pressured by the bureaucrats in D.C. to go after disability recipients as if everyone is on the take for fraud.

SSDI is going broke thanks to poor funding decisions by Congress, so SSA employees are looking for ways to save SSDI money, which basically means finding folks whom they can somewhat justify kicking out of the program, even if those recipients are truly disabled.

This is why SSA has now started pulling benefits from some recipients who are over 60. That used to be unheard of in the past, but not anymore. Congress is deliberately forcing SSDI into this situation, which means desperate measures on the part of SSA employees to look for savings any place they can find them. And if that means pushing someone off SSDI at 62 and onto partial payment SSA retirement benefits, they'll do it. And this situation is only bound to get worse.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
We live in a twisted world if a year is considered fast (while living in financial limbo/poverty!)

I first became too ill to work full time in early 2007. I fought those bastards for six years before getting the first check. There is little incentive to speed up the process. The disability lawyers take a fixed percentage of the retroactively paid benefit, so the longer nothing happens the bigger their fee gets. It's all arranged between the lawyers and Social Security - patients have no say in the arrangements, so one again we are just someone's meal ticket.

And of course no one even counts the number of patients who give up or die before the first check.

I'm sorry, @Oredogg I don't mean to be a wet blanket. Congratulations on winning your claim. A regular check, even a small one, is a huge help for one's morale. I have found that less financial anxiety means less symptom severity. Best wishes to you and your wife. :thumbsup:
 

out2lunch

Senior Member
Messages
204
I'm sorry, @Oredogg I don't mean to be a wet blanket. Congratulations on winning your claim. A regular check, even a small one, is a huge help for one's morale. I have found that less financial anxiety means less symptom severity. Best wishes to you and your wife. :thumbsup:
Ditto for me. I don't mean to be a wet blanket about SSDI going broke. I just want to make sure that you and your wife understand that, in some ways, the battle isn't completely over. You have to keep good records and regularly see medical professionals in order to keep the disability from being taken away.

In this day and age of bureaucrats trying to privatize government programs like SSA, it's absolutely necessary!
 

geraldt52

Senior Member
Messages
602
I first became too ill to work full time in early 2007. I fought those bastards for six years before getting the first check. There is little incentive to speed up the process. The disability lawyers take a fixed percentage of the retroactively paid benefit, so the longer nothing happens the bigger their fee gets...

Seven years for me. And yes, whether and when you receive benefits will largely depend on nothing more than luck. If after the initial application, and first appeal, you then end up with an "Administrative Law Judge" who doesn't believe that CFS is worthy of disability, you are likely in for a long haul. If you get a sympathetic judge, you are very lucky.

Also, when you've exhausted all your Social Security appeals, and end up in Federal Court, the Social Security imposed limits on attorneys fees no longer apply, and the attorney's fee will be approved by the Federal Court. It ended up costing me about $35K of my benefits. Even though the fault in my case lay entirely with Social Security, it cost them not one penny.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
That's not completely true.

The process does start out with correspondence and a short questionnaire to fill out about ongoing treatments and any new symptoms or diseases, etc. But about 10% will get the long form questionnaire, which is a bear to fill out. And many times, the SSA rep conducting the CDR (Continuing Disability Review) isn't satisfied with the answers, even if you're regularly seeing doctors. Then you will be sent to specialists for medical and/or psychiatric exam, just like you went through prior to the hearing when appealing the initial denial.

This happened to me last year, about 2.5 years after getting my SSDI. The psych interview was scheduled first, and I failed that so badly that the medical exam was cancelled. I was put on a three year review schedule even though I'll be over 60 when the next one rolls around.

@out2lunch, you are absolutely correct. In my brainfoggy haze, I had forgotten that I was sent for a psych interview a long time ago as part of a CDR (Continuing Disability Review). It took about an hour. In my 20 years of being on SSDI I only recall having to see one of their doctors once.
 
Messages
53
Location
Oregon
Thank you all for your kind, truthful words and advice. My wife has been unable to perform the 'leg work' for her application, so I took it on with vigor. I truly believe that made a huge difference. I have been keeping track of her medical records by scanning them and storing electronically, since our current system cannot seem to get their heads around universal access. I will continue to document her physician care for future evaluations, per your advice. Thank you!

The SSDI back pay and monthly pay is huge. As a spouse caregiver, this has lifted a heavy financial burden off my back. I've quit work to care for her and am ill as well, but fortunately much more functional than my wife. I can now more comfortably pursue my own health care needs without having to worry so much about putting her in jeopardy if something adverse, God forbid, were to happen to me.
 

geraldt52

Senior Member
Messages
602
... As a spouse caregiver, this has lifted a heavy financial burden off my back. I've quit work to care for her and am ill as well, but fortunately much more functional than my wife...

If you don't mind my asking, Oredogg, are you and your wife both sick with "CFS", or are you ill with something else?My wife and I are both ill with CFS, so I understand the stress of two ill people essentially trying to care for each other.
I'm glad you were able to get her benefits within a year.

To give an idea of how fickle the SSDI system is, in the 90s my wife was approved for benefits by an Administrative Law Judge in about a year and a half. 5 years later, with the same lawyer, same doctor, and much better documentation, I was denied throughout the entire Soc Sec appeals process...and it took 7 years and a trip to Federal Court. Once an ALJ decides to make a negative finding, even based entirely on nonsense, that record will haunt you throughout the process.
 
Messages
53
Location
Oregon
@geraldt52 I am so sorry to hear about your experience. Seven years is seven years too long. That's just ridiculous. Does Social Security take into account whether your spouse is receiving benefits as part of the decision? They shouldn't, by any ethical standards, but those were thrown out the window long ago.

My wife clearly has severe CFS and meets pretty much all diagnostic criteria. I, on the other hand, am not a great fit for CFS. I have more musculoskeletal/joint disease, myelopathy, Crohns, etc. Definitely an intriguing question as to whether our illnesses are related in some way. You can share in the difficulty of caring for someone when you struggle with illness yourself.
 

out2lunch

Senior Member
Messages
204
@out2lunch, you are absolutely correct. In my brainfoggy haze, I had forgotten that I was sent for a psych interview a long time ago as part of a CDR (Continuing Disability Review). It took about an hour. In my 20 years of being on SSDI I only recall having to see one of their doctors once.
Brainfoggy haze? I live on that street! ;)

No worries. And you're quite fortunate that you've only been "re-examined" just once! I'm hoping I don't have to go through extensive CDR again. But with my rotten luck, I'm not holding my breath.