Feedback please from those knowledgable about SSDI
 

Several weeks ago I called the caseworker evaluating my SSDI application to check on the progress. She indicated that she was missing one recent report from my PCP, despite a written request. I was surprised since she had received about 600 pages of medical records. I offered to get the record myself and send it to her. She told me to call her when I had the report so she could give me a bar code to send it to her.

After I got the report I called and left messages for two weeks for her to please call me to provide me with the barcode. No response. When I called last week the reviewer answered the phone and stated that she had already made her decision, didn't need the report in question after all and that her decision had already been reviewed by an in house physician.

Of course she indicated that she was not permitted to tell me of the decision and additionally, my case could be selected for a "quality review."

I am also concerned about reports that quotas have now been established since so many folks are losing their jobs and filing for SSDI because they can't find work.

I am confused. Any feedback from those who have gone before me would be very much appreciated!

Thanks!

I'm assuming the caseworker is from SS? Is this your first attempt at acquiring SSDI? Do you have a lawyer?

Yes, it is my first attempt and I don't have a lawyer. The case worker is from SSDI. The decision was made very quickly. This surprised me because so many have waited much longer. Given my medical history, and the detailed records of numerous specialists I can't see how I would be denied. I don't know if the possibility of a quality review is not a good sign.

Thanks!

Very good luck to you if you are approved! :)But, if you're not approved don't fret because it usually happens this way. Denied twice and approved on the third time around is the normal but not etched in stone. If you are denied I'd hire a lawyer who is an expert dealing with SSDI cases, usually found easily in most areas of the country. Most of these lawyers handle nothing but SS cases. It sounds like you have your ducks in order as far as your medical records, very important and may be the reason you might get a positive judgement the first time around. If not, hand those records over to the lawyer. Good luck and keep us posted.

By the way, the payment amount to the lawyer is fixed by law and comes out of the SSDI settlement.

jim

Many thanks Jim. Do you know anything about why a case would go to "quality review?"

"Could be reviewed" My hunch is (I could very well be wrong) is she told you the decision without telling you. If she said "this may have to go to a quality review" means (I think) that you've got a positive judgement, however a review of this positive judgment may have to take place. I say this because if you are denied (which is common the first go round) there would never be a quality review in the first place, only reviews of positive judgements take place. The other thing I see in this is if it does go for a review this may hold up the process for a while, so the case worker is also telling you to be patient. When my wife got a positive judgement her lawyer stated that there is a slight chance that the judgment may go in for a review. Her advise was not worry about it at all. Reviews are common in SS cases, I wouldn't worry about it or take it personal.

Others, please chime in if there is important info I'm missing.

ballerina,

jimking gave you all the best advise. All I can add is I also was denied the first time, without an attorney and then approved on the second request with an attorney. The whole process took almost 2 years and my medical records where over 2500 pages and it was a certified copy of my medical and still got denied the first time, so it's definitly not unusual.

Good Luck,

gabbycakes

thanks so much Gabbycakes!!

Don't worry about the possibility quality review. They pull a very small (very small) sample of cases and get another set of eyes on them. They told me the same thing, but I was approved quite quickly. They are pretty darn busy so the sample that gets reviewed is minimal.

Good luck, and I sure hope you get some good news; mine came via a phone call from the local Social Security office.

thanks birchlake,

Were you approved on first try without an attorney?

ballerina.

I have read of a few cases around here recently who were approved with RSD and TOS (they are both dx's of mine too, so the combo always 'jumps' out at me).......most of us though it seems to be a denial. second denial, then final approval at the ALJ stage. 3 years til approval has been a common 'theme' around here (meaning this forum, not my geographical area)

I don't know how they work things at SS, but I believe it would be a violation of law to HAVE to deny a certain quota or only be able to accept a certain quota. Their job is to decide if YOU are totally disabled or not......not how bad you are compared to the other applicants they reviewed that day.

I have also read that they are getting more applications because layoffs and difficulty finding another job are making some people think applying for SSDI is their best option.

Sadly, it's a waiting game.

There is a great social security forum here and you might want to check it out too.

I was approved on the initial application WITH professional representation. She was not an actual lawyer, but she is from a firm that does nothing but SSDI cases. She was very competent.

It is very hard to say whether I could have had the same results myself. But with this being unfamiliar waters and I wanted approval as quickly as possible, I retained her and it worked out. But with my situation, she did take the maximum payment allowable. But still well worth it. My humble opinion is that your odds increase with professional representation. They know that there will be follow through regardless of the outcome so..............

Yesterday I called to check on the status of my SSDI application and was told that my application was selected at random to go to "quality review" which will take up to 60 days. I was told that denials do not go to quality review and that most approvals are not overturned by the quality review process.

I had a surprising reaction to this call. Seething anger came to the surface as I recalled a former neighbor who faked chronic pain with worker's comp, claiming that she had no choice but to work even though she was very disabled due to falling from a chair at work. When she was finally laid off she filed for disability. She always limped around on a walker when being watched. In her back yard, however, she was hanging off ladders painting her house, using a tiller and never failed to attend Baltimore Orioles spring training or to go on vacations. My former neighbor incredibly got SSDI after many years of trying. After she was approved we never saw the walker again.

I guess folks like my former neighbor are the reason it can be so challenging for deserving people to be approved!

I understand most of your comments about the neighbor, but it frustrates me when people make judgements about the disabled as if it's a crime to take a vacation.

Disabled doesn't mean dead. :(

I have a whole host of strategies to cope with traveling, including flying in 3 or 4 days before my vacation partner to recover from the flight. I never even thought of flying with a pillow until I picked up that tip from this board...

Family members have judged me for going. It does take a toll on my body. I'm not cured when I get there. I can't have anywhere near a normal activity level of a healthy person. I'm on a really tight budget.

The flip side for me is that the only place I'm naturally pain free is in warm ocean water, so even getting to swim a few times while in Hawaii gives me HOPE, even if other days I can't leave the room due to pain, or an upset stomach, or vertigo.

Just wanted to throw another perspective out there...

I don't believe our perspectives are different.

I did not pass judgements on my neighbors vacations. I merely reported my observations of her physical capabilities prior to SSDI approval and post SSDI approval as well as her physical condition when she thought she was being observed versus when she thought she was not being observed. While in church, the grocery store, library etc., she needed a walker and was slumped over moaning and groaning. She made a large hysterical display at church crying that she could not make it to the communion rail so the minister had to bring communion to her pew. The moment she returned home the walker was gone, and she immediately engaged in activities like operating tillers, climbing ladders to the third floor, throwing her grandchildren over hear head, digging up trees, etc. For ten years her "RSD" only reduced her to groans and a walker while in public. Never in ten years did I observe these behaviors in her back yard. She complained bitterly that her family "didn't understand her "RSD." How could they when she went jet skiing on vacations, pitched tents and went rock climbing.

After a winter storm my husband observed her in her back yard running a huge snow blower after just telling him how she could not tolerate noises and had told her doctor she could never lift anything over five pounds. When my husband later questioned her about how she could operate the tiller and endure the noise she said, "I had no choice, my husband was at work and I have to finish the driveway so we can get out to a party tonight." I forgot to mention that after she ran the tiller for one hour she spent two hours shoveling snow, then climber a latter and cleared part of the garage roof of snow for another hour. An hour later she was dressed up and heading out to the party but not before she tossed the walker in the trunk. This was standard operating procedure for her for ten years but she was "too disabled" to work.

Unfortunately some people do beat the system and make it harder for the rest of us applying for SSDI. My husband now regrets not turning her in to workman's comp. I do too.

The above was my only objection. Saying she went on vacation to go rock climbing or to use a jet ski is a wee bit different.

Frankly, with as hostile as much of the general public seems to be towards those that receive disability (until it happens to them or to a close family member) it kind of stumps me when people get away with blatant fraud.

Many moons ago, during a WC deposition, the insurance attorney rather indignantly and nastily asked me about my ardent knitting hobby that a co-worker had informed on me about. Clearly that was the real culprit behind my injury. It was quite an "ah-hah!" moment until I burst out laughing hysterically. I have never once knitted. Maybe someone confused a memory, or maybe they just lied. At least I was able to respond to the accusation.

If I have a point, I guess it's this:
Your own habits are now going to be under a continual microscope for any and all to judge, simply because they feel entitled if you make a disability claim. And while you may have nothing to hide, it isn't enjoyable to have strangers, neighbors, extended family, and so on--condescend to whether or not they think you deserve disability benefits.

My health and status of disability should be between me and my doctor.

Well okay, and Social Security. Hmm, and a gaggle of WC case workers, investigators, hired gun docs, and attorneys.

I'm actually surprised WC never questioned you or your husband about your neighbor's activities. That is something they commonly do.

Perhaps your neighbor really had a pysch claim and it was less embarrassing to pretend her disability was physical, or maybe she truly was committing fraud. Who knows?

You chose not to report it, or confront her with your minister, so that ship has sailed...

Mine went to quality review. I was told it was going to be denied, then someone picked up on the fact that I was on a rollabout, so they requested more information and Tuesday I found out I was approved.
Anita

How absolutely absurd that you had to endure such treatment. That must have been an emotionally devastating experience that you will never forget. I hope you never have to endure that again.

As regards my former neighbor my husband and I never got involved. Since my husband is a psychologist we both wondered, if my neighbor might and claimed RSD because that was more socially acceptable than a psychiatric problem. A few days before my neighbor moved, however, her daughter who lived with her came over to say goodbye. Her daughter expressed her extreme frustration because she claimed that she had accompanied her mother to doctors appointment for years for treatment for RSD but knew her mother was faking it, based on the same observations that we had. We did not comment because it made us quite uncomfortable. She also indicated that she could no longer live with her mother or participate in her mother's life because her conscience was causing her extreme anxiety. She reported being alienated from her father because although he knew his wife was faking it stated that they needed the money and his wife refused to work.

When I applied for SSDI the case worker explained to me that the paperwork and application process had recently been tightened up. I did not question her but was fine with that due to the experience with my former neighbor. I found the application process stressful and arduous but fair. I was glad to see a system that seemed accountable and I did not view any of the questions or requests for medical records unreasonable.

My point is that folks who have beaten the system make is hard on the folks who physically cannot work. It is because of my experience with this former neighbor that I believe SSDI requests should indeed be scrutinized.

My responses are in bold.

I am so very sorry you are so upset by my opinion. The last thing I would want would be to cause anyone with CRPS to increase their pain through emotional upset.

I also hear the outrage, hurt and anger at the way you have been treated by others and how emotionally raw that has left you. I don't believe that my worst enemy in my own CRPS battle is the CRPS itself, the view of others, the system including insurance, SSDI, the medical maze, etc., all things over which I have very little control. My own potential worst enemy is the only thing I have control over- that is my emotional response to all those things which can cause emotional upset, increase my pain and determine how raw I become and how much I suffer.

You are very right about one thing. My personal experience with CRPS and my past experience with my former neighbor will certainly effect my reaction to anything similar in the future. I very much regret not reporting her to WC and should I find myself in a similar situation I will not make that same mistake again.

Your opinion didn't upset me personally, no need for an apology. The fact that you gave one probably means I've offended you. If I have, I'm sorry.

I DO get that most people faced with a similar situation would likely respond exactly like you and your husband did at the time. As a society, the norm is no longer to worry about the collective good, and that is what concerns me.

Unless you have a very unique experience, you should expect an onslaught of bs when dealing with the system. Yes, investing negative energy into something beyond your control is counter productive, but expecting WC and the disability process to move ahead like a regular insurance claim seems naive.

It can complicate SSDI approval if you have an open WC case. Having additional, biased resources being used to downplay/disprove your work injury (resulting in a decreased WC claim) can then bleed over into your SSDI claim.

Imagine upon meeting a WC defense doc, that this hired gun denies RSD is a legitimate illness. He then generates a report stating you do not have RSD (well duh! it is a made up disorder after all...) and a SS case worker now has documented evidence to deny your SSDI claim.

A standard tactic is to stall treatment with "creative" reports by overloading treating docs with required responses within limited time frames. The problem is that a WC doc that's never even met you can write a report full of bizarre fabrications about your illness and/or abilities, and SS will still give it full weight, because no where in the report is it revealed that no exam was done.

These things can be refuted, but it will require extra documentation and can lengthen the process. When dealing with the WC/SS combo, the injured worker is essentially forced to not only prove what is fact, but also is forced to disprove WC's fiction.

Even after SSDI approval, WC can cause problems. Medicare can deny payment for treatment based on the drivel in WC reports.

All this can be dealt with, and again, hopefully you'll not have to deal with it.

Thanks Lit Love, Be assured I won't make this mistake again. If anyone finds themselves in a situation similar to mine here is the solution.

Workman's Comp Fraud Hotline is 888-372-8330

Social Security Disability Fraud Hotline is 800-269-0271

What is wild in my opinion is that she picked RSD to fake? A relatively rare condition, one I would think would be hard to fake especially over time and one that most people have never heard of until they come down with it. I pray RSD doesn't become a popular health condition for frauds.

I used to believe that CRPS/RSD was rare but I don't any more. We know four people who have been diagnosed, not close friends but colleagues.

Both my pain management doctor and Neurologist treat many CRPS patients. My primary care physician, whose practice is in a rural area, also treats CRPS patients and several years ago his physician's assistant was disabled due to CRPS.

I used to be troubled by strangers asking me about my service dog. I got some good advice from an NT/CRPS service dog veteran who explained why she was very open with questions from strangers and her explanation made sense to me. Now, if asked, I begin by explaining that my dog helps me by picking up things steadying me, assisting me with dressing, etc. due to a neurological disorder. I am now open and if anyone asks I tell them I have CRPS. I am amazed how many people indicate that they have a friend or relative with CRPS.

I think there are many of us out there!

I am in the same prayer department with you Jim!!!!!!!!!!!

Agreed. And, even more surprising since it started over 10 years ago. The numbers a few years ago use to claim 1 in 100,000 had RSD I believe.

Think of the statistical probability of 2 neighbors claiming RSD?

Bringing attention to RSD means earlier treatment for more patients, which is a VERY GOOD THING, but there does seem to be such a jump in the claims that it suggests some over diagnosis. Pain is subjective. All nerve pain shouldn't be assumed to be RSD. Even, diabetic neuropathy is commonly being misdiagnosed as RSD.

Doctors seeing only a few patients with a rare disorder can try to keep up with the literature, but most think they're more informed than they really are.

A WC QME made a claim to me he's "cured" all his patients that have had RSD within a short time frame, and acted as if my lengthy experience with RSD is atypical of the syndrome. I think we all know the opposite is true and that remission is sadly rare.

I am so glad that your denial was overturned at the level of Quality Review. I am now thinking that I must have misunderstood the SSDI caseworker evaluating my case. I thought she told me that denials don't go to quality review. Are you sure your denial was overturned as the result of quality review?

Thanks so much!!!!!

There are instances where you would anticipate larger spikes of RSD, such as military in active combat. Also, the plethora of hand surgeries caused by overuse of computers (in the past 20 years) might account for a chunk of the rising numbers. But, unless there are environmental factors contributing that I've never heard of, multiple legitimate RSD diagnoses in a rural area is surprising.

I'm not suggesting that they're all faking RSD, or don't have serious health issues. But rather that docs in a rush to treat potential RSD patients aggressively and early (which is commendable), are assigning a diagnosis of RSD prematurely.

I've actually used the question of how many RSD patients have you treated as my beginning question to determine a doc's credibility (excluding RSD specialists, of course.) Even a regular pain doc should only have seen a relatively small number of RSD patients over the years. If their numbers are over inflated, I know they're throwing everyone with neuropathic pain under the RSD umbrella. Question them further about some of "our" non-pain related RSD complications, and from their confusion, you'll see what I mean.

Doing the SSDI Happy Dance!
 

I just received a call from SSDI and I was approved!!! Thanks to all of you who helped me with info and support. I was very surprised because this was my first shot, I had no representation and my medical records were peppered with some supposed CRPS specialists saying such things as "It is all in your head" etc. I am even more surprised that it happened so quickly.

I will get my back pay this month and my monthly payments start next month.

One less thing to stress about.

For everyone who is out there still waiting take heart and hang in there!

Again many thanks for the positive comments and support when I needed it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !

I now plan to go off my anti-inflamation diet and dig into a cheesecake with a serving spoon-wish I could share it with those positive folks who helped me while waiting, even though the wait was not long.

Ballerina, Congrats to you! Isn't that just a wonderful call to receive???!!
:D:D:D

Congratulations! It really is a load off. The other issue is medicare.

Thanks Jim!

Thanks so much birchlake!!! What is even better than the call from SSDI was that my service dog just brought me a piece of mail that had apparently fallen behind the table when my husband got the mail this afternoon. She was wagging her tail and grinning when she placed it in my lap.

It was a year of SSDI back pay and I have not even received my award letter yet!!!

I to am surprised by ballerina's experience with RSD being diagnosed in her area so often.

I also ask doctors how often they have treated RSD, or seen it.
1st Pain mgmt Doc - a doc for about 30 years when I saw him - one other case

1st neuro - doc for about 20 years - two other cases, but only one in my area.

2nd pain doc - in large city - I think he was around 50 years old - he said he saw less than 10 cases, one was my half sister. He said I could not have had RSD because I did not have dark hair growing on my foot, although he admitted all other signs pointed to it...

head of physiatry at large University - - in his late 60's so he had been a doc a long time, and has since retired - said he had seen a handful of cases. He tried to help me, but ended up sending me to Cleveland Clinic.

Well known Neuro in large city - treated me for 3 years, medications, botox, trigger points, occipital blocks, was talking intracatheter epidural block, finally wanted me to go to friend of his for exploratory shoulder surgery --- because he said that I could not have had RSD after all. Said he had seen a few cases and he cured all of them in a couple years. I didn't get better, so I didn't have RSD, must have a shoulder issue. I asked, well, what about my feet? No answer. I stopped going to him.

Foot surgeon where I get my braces made - he also takes care of the large university's athletes. He said he has seen a "few" people with RSD. He looked to be nearly 60. He asked ME who I go to so he can refer his clients to them.

Rheumatologist - she is about 40. One of my favorite docs. She was one of the first to suspect I had RSD. She thinks it is under diagnosed. She has not given me a number of people she has seen with it. But, she has been good about helping me deal with it... but has not had any ideas for me on specialists etc - but has done well with prescribing meds -- she is the one who put me on the "RSD cream" with ketamine I use, the voltaren gel, the baclofen, changed my blood pressure med to norvasc which helps the redness, swelling etc. Plus other things. I think she understands RSD - but she is not up on the very latest treatments.

Pain Mgmt doc #3 at Clev CLinic - says she has seen hundreds of people with RSD. She says that they are not only from many states, but from all over the world. She is my #1 doc for answering questions etc... but, being associated with Clev. Clinic and Stanton-Hicks - it is no wonder she has seen so many people with RSD.

My family doc - is about 50 and she has had 2 other people with RSD. One got better pretty quick, one has a very mild case. She does her darndest to help me.

I have never met anyone else with RSD other than one woman who is in my service dog club. My half sister had it, but I didn't know it until after she passed away. My asthma doctor's one nurse has a husband that is supposed to have it - my asthma doc asked me who I go to so he might pass the info on to the woman's husband.

Maybe it depends where you live. I live in a small town, but within an hour of a really large university in a pretty large city that has 3 large hospitals. Yet, I can't find a doctor that knows anything about this without driving 3 hours to Cleveland.

Juli

OH -- and Ballerina :D:D:D on the SSDI -- I have had mine now for about 1 year - and I can't get used to it yet. I didn't have a lawyer either and mine was first time. Maybe they are starting to see the light on RSD? I had several other things like Peripheral neuropathy, some neck issues, fibro, my feet keep fracturing... etc. too... but still it seems a few people have not had lawyers, and got their SSDI first time on RSD lately.
SO happy for you! :D
:grouphug:

Thanks daylilly.

My pain management doctor did his fellowship at Beth Israel. They are doing some of the cutting edge research on CRPS. In addition to his training he is very interested in treating CRPS patients. My pm doc also refers his CRPS patients to Dr. S in Philly for a second look. My Neuro is very young but also well trained in CRPS. I know he is not the only neuro in his practice to treat CRPS because one of my husband's colleagues with CRPS is being treated by a partner in the practice.

My primary care physician first learned of CRPS 10 years ago when his PA was diagnosed. That is how he is up to speed. I was diagnosed by a physician who was the director of our local Hospital emergency room. He was extremely knowledgable and set me on the right path.

That is not to say I didn't have to kiss a lot of toads until I found my Princes. Believe me I kissed my share. The biggest toad was from the world renowned Blaustein Pain Treatment Center at John's Hopkins Hospital. I became real good real quick at interviewing and rejecting doctors, PT's and Neuros. I visited many before I was satisfied with the team I have now.

Of the four colleagues we know of three have been evaluated by Dr. S in Philly and all three were awarded disability, on first try. The fourth was in a wheelchair and had severe dystonia for over a year but now is in partial remission, out of the wheelchair and is working full time now as a teacher.

I live in a very small town. Before CRPS I could have danced across it. Just after I was diagnosed our vet told me of a woman in town who had CRPS for over ten years. I knocked on her door and introduced myself to her. I was so happy to find someone who could provide me with first hand experience. I will never forget her words to me as I left her home. "CRPS won't kill you but you will eventually wish that it would." She has since passed away but her words very much set the tone for my approach to confronting my CRPS.

I truly do not believe that our disease is as rare as once thought.

I certainly hope that your experience with SSDI, my experience and the experiences of those my husband and I know of will become more common for folks with CRPS. I pray it does!!!!!!!!!!!!

A very closes intensely private friend, who was the reason I went to Hopkins in the first place, is in remission for the second time. While at the library one day a woman with a purple leg was softly crying and was having muscle spasms and attempting to stretch her leg out while a library employee was suggesting that she was disrupting the library and blocking the isle. I suggested to the employee that if she was not acquainted with the ADA perhaps her continued actions would cause an introduction to the ADA that she would not like. This woman, who was obviously in pain thanked me and shared that she had a rare pain condition called RSD. She was so relieved when I told her she need not preach to the choir. We have since become good friends but she has recently moved to Reston Virginia where she has only interviewed toads. If anyone knows of a good CRPS doc in that area would you please post it on that CRPS doc thread?