How to Find Your Secret Code (Disability Update Report)

Bet you didn’t know…. you have a secret code! It appears on your Disability Update Report. It is in the top right hand corner and it looks like this:

22447717b4fcd7bf387ff2acd75a31eff4800715.jpg
This graphic was created by LostinCyberspace, moderator at MDJunction.

There are a few interesting things you can find on your secret code.

Profile Code

Look at the top of the first page and you will see three rows of letters and numbers. On the second row, in the third field, you will see the letter “L” or “M” or “H”. That’s your profile code! It means low, medium, or high. The computer uses this code to help decide whether to send you a long form disability reviews

Don’t worry. This code is not that important. It won’t change the decision that gets made in the end. It is only used to decide which form to send you – short form or long form or both. If you are an H you are more likely to get a long form or both forms. If you are L or M you are more likely to get just the short form.

🌷 Ten Tips and Tricks for Filling Out a Disability Update Report

🌷  How Does Social Security Process a “Low” Profile Code

🌷 How Does Social Security Process a “Medium” or “High” Profile Code

Diagnosis Code

The second interesting thing is your diagnosis code. Many people already know what impairments they were approved for but some people do not. If you applied for several different conditions, you may be wondering.

You can figure it out here. It is the end of the first line, and it is usually eight numbers. The first four numbers are the first diagnosis and the second four numbers are the second diagnosis. If you have no secondary diagnosis it is 0000. If your secondary diagnosis is listed as addiction — that doesn’t mean you actually were approved for addiction, it means they approved you DESPITE your addiction.

Diagnosis codes are listed here: https://secure.ssa.gov/poms.nsf/lnx/0426510015

The profile codes only list your primary and secondary conditions. In some cases, there may have been other conditions that also played a role in your approval.

Tip: This page is long and confusing! Here’s an easier way: After you open the page, try using the “find” feature on your computer. Type in the first four numbers, and it will bring you to the correct place on the page. For example, if you type in “9050” you will be brought to “Late Effects of Musculoskeletal and Connective Tissue Injuries (amputation)” Then try the second four numbers.

Review Cycle

The first number on the second line is your review cycle. That is how often they plan to review you. It is often 3, 5, or 7 years. It is not always accurate – reviews often come late, sometimes by several years. Although less likely, they also sometimes come early.

Other Options

You can also find out your review cycle by calling Social Security and asking, or by calling and requesting a copy of your Benefits Planning Query.

You can also find out the conditions you were approved for by calling your local office and requesting a copy of your file on CD. If you have been through a full continuing disability review, request the files from that review. If you have not been through a review, request the files from your original approval. You may be charged a fee.

Call your local office for these things. Do not call the national number.

Tools for Troublemakers

Everything No One Ever Tells You About Living on Social Security Disability

How to Complete a Disability Update Report 

Social Security Policy Manual – Section on Profile Codes

Thanks for Reading

🌸 Art on this page by Robin Mead and Elizabeth D’Angelo.

🌸 Page Updated: 10/1/19

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122 thoughts on “How to Find Your Secret Code (Disability Update Report)”

  1. I received a short form a few months ago and completed it as advised on this site and others.

    I had a low profile code and score. I used all caps and didn’t add any info that the computer couldn’t read.

    I am 49 yo. and have multiple physical and mental issues, for which I have regular doctor’s visits. I didn’t hear anything from SSA, until a long form arrived in the mail.

    Is that common? Did I do something wrong? Should I (continue to) worry?

    Like

  2. Hello, I have a question that I can’t find a answer to. On my primary and secondary diagnosis codes it’s listed as 5550 and 2480. The diagnosis code 5550 is for IBD. I have Crohn’s Disease. The other code 2480 I don’t know the diagnosis for this code. I believe I looked it up before and it listed 2480 Diagnosis Established – No Predetermined list code of medical nature applicable. Do you know what this code is used for?
    Thanks

    Like

  3. Hi sleepygirl, maybe you can help me figure out something in the scanline. On the medical diary my scanline reads 3/DEA/L/0038…what is DEA?

    Like

  4. Hi Sleepygirl,
    My child benefits were continued after a full CDR this year. We obtained her file on CD. To make a long story short, his profile was changed to medium with a review in 11/24. His original approval had has as a short cycle. I thought children were always either 1 or 3 years. Is this normal?

    Like

  5. Hello: First I want to say Thank you for all the information you have provided. I am wondering what is MIP and MINE ? Just seen these in some of the posts. I got the short form on October 11 and I’m trying to get it filled out. It is stressful but I’m thankful that it’s not a long form. I’ve been on disability since 2017. I didn’t know exactly what medical diagnosis I was approved for until now. As I have several. So thanks again for your help. Also my profile is M and the next number is 0053, so what does the 0053 mean ?

    Like

  6. My profile code is Low and profiling score is 59. I am 61 years old, I have been on SSDI since 1997 and cannot get Social Security to change my medical review date from 3 + years to 5 or 7 years. I need the 5 or 7 years so I can file a TPD form with the Department of Education. Any suggestions on how to get someone in Social Security Office to review and change the medical review date, as it should be, according to POMS? I have called every Social Security Office in my area, to no avail. You would be surprised at how many SSA employees, don’t know or comprehend their jobs. I am so frustrated with them.

    Like

    1. I wish I could offer help. I’m 53 and they didn’t follow POMS for me either. I was scared to death but asked my doctor to fill out and she did it happily two weeks ago. It’s worth a try ! FYI My doc did not want to get involved with SSDI paperwork but didn’t even blink here…

      Like

  7. My approval letter has one long line above my name and address 2081 3 MB 0.699 T14 MAAD296 PL1 S296 M3 PC5 151201 Disabled on 11/16/2014 Benefits beginning 05/2015 Thank you Scott

    Like

  8. Just curious on the second line of my “secret codes” it states my profile type is low…
    My profile score is a 0001 and clue if that is good or bad?? I received the short form and I’m just worried it won’t go through even though I have not improved and am not expected to improve but only get worse..
    Thank you..

    Like

    1. I received decision letter after hearing and then award letter. ALJ indicated MIE and a review in 2 years. Award letter indicates review once every 3 years. I called local ssa office and was told I have a 7 year review cycle. I called 1800 number and was told review cycle is 3+ years. I called another ssa local field office and was told once again review cycle is 7 years. I called a 3rd local ssa field office and was told review cycle of 2 years. I requested a benefits planning query and was told a review scheduled for 2 years. Not sure who to believe. Why the different answers?

      Like

        1. Just providing an update. I finely was able to get a definitive answer to my review cycle. BPQRY is accurate. I’m on a 3 year cycle with review in 2 years only because that’s what the judge recommended on approval decision.

          Like

  9. Can you explain how to understand the BNC code?
    Containing both letters, and numbers, I understand that it is used to replace the claimants social security number; however I’ve not seen anything as described on the Disability Update Report/Review.
    I was assuming they’re both some the same, but couldn’t make sense of it.

    Like

  10. After doing further research, I discovered that the letter I received from Social Security after my short form review was a “Deferral” letter which means that my review cycle is changed from 3 to 7 years.
    I hope this helps anyone else who receives the vague “We sent you a letter telling you that we were going to review your disability case.”

    Like

    1. How did you know it was a “deferral”? According to the POMS criteria, I should have been moved to 7 years because of my age at last review but unfortunate wasn’t

      Like

  11. Thank you for the valuable info! I passed my first short form review and wanted to know if my status changed from MIP to MINE. I’m afraid to call my local Social Security office to find out if my Review Cycle has changed from 3 years to seven years because I’m worried that it might trigger a CDR.
    Do I have anything to worry about?

    Like

    1. Sorry for the slow response. I don’t think you have anything to worry about with calling, however, I do not think a review cycle can change as a result of the short form.

      Like

  12. Thank you for the valuable info! I passed my first short form review and wanted to know if my status changed from MIP to MINE. I’m afraid to call my local Social Security office to find out if my Review Cycle has changed from 3 years to seven years because I’m worried that it might trigger a CDR.
    Do I have anything to worry about?

    Like

  13. Hello Sleepygirl,

    I was approved for SSDI in 2018 but never informed of my approved diagnosis. I called my FBU (Foreign Benefits Unit), as I reside overseas. I asked for the approved diagnosis and was advised they don’t monitor that information at their level, but they would request a letter be sent to me from some other office. Is this normal and will this create a review for me earlier than nornal?

    Like

  14. My daughter received her 3 year CDR. After all the context (last page) it states Unit: CDRINT. I have been told this is a standard code, but also told this is an internal code. Do you know what this means?

    Like

    1. I’m still trying to figure out what that mean on my paper too. Have you found what DTA means!? These paper are confusing.. did you work before or something? Wondering if someone reported you working before. Im not sure

      Like

  15. Hello…
    I have two questions:

    1) Hospitalization Question on Short Form: I was admitted with vertigo as “observational” hospitalization. Is this still considered as being hospitalized? Also, the hospital diagnosis is UNrelated to my SSDI diagnosis code. Do I still need to include it on the short form?

    2) Will a “Yes” to the hospitalization question send a red-flag?

    Thank you!

    Like

    1. I don’t see specific rules for this. My general understanding is to include all hospitalizations. I have not seen any policies to indicate that simply listing a hospitalization would cause a red flag.

      Like

  16. Hi sleepygirl! (Missy2)….Wondering what the profile score is???? I see a posting on here where “Bobbys” went up….mine is 037….I want to know what this score is all about I am L/037

    I have learned here on your page that the L means most likely to get a short form..I have gotten a short form…and I sent it back today….I could figure out everything on the short form…

    I was approved for Anxiety and OCD Disabilities with the 2nd code due to addiction (was figured out I was disabled regardless of addiction)….

    I got a 3 year review period..but what bothered me was I was approved in Oct 2016…and didn’t expect this review until Oct 2019!

    I got it in Feb…2019…I truly hate them…lol (Maybe my letter said there would be an 18 month initial review)..probably did.

    But profile numbers?

    Like

  17. I have a question about the second line mine stars with an X and
    not a number, so what is my next review set for? I was sent the short form first review. Thanks in advance.

    Like

    1. Hi! I just got my review 6/7/19 and my 2nd line code is “Q” and not 3,5, or 7. Can’t find any info about it online either :/

      Like

  18. I have a question about the second line mine stars with an X /DDA /L not a number, so what is my next review set for? I was sent the short form first review. Thanks in advance.

    Like

    1. hmmm… I do not know what that means. If you call ssa they may be able to tell you your review cycle. Or you can request a benefits planning query and it will be written in that.

      Like

  19. Three months is the average time following you returning the Disability Update Report. We did my sons in October and just received the response today. “We sent you a letter telling you that we were going to review your disability case. However, we do not need to review your case at this time. Therefore, we will not contact your doctor now. We will keep any information that you have given us.”
    He is coded for the next one in three years, he has a Low rating and profiling score is under 100. Since its a birth defect, I am surporsed that they review every three years – I wish he didn’t have the damage that he does and wouldnt have a need for the SSDI. We are working with him so hard that he can come off of it and become solely dependent on himself. I am thankful of all of the years my wife and I put into the SS system while we worked up until my retirement.

    Like

  20. Thank you for all the information. I don’t remember sending any form but received a notice that sounded like “ for now we decided to review your case based on previous papers” – I am a little bewildered about it

    Like

    1. I am bewildered as well. I am sorry that I don’t have an answer here as I don’t know what this is? If you filled out a disability update report a long time ago, like a year or two ago, it is possible that this is just a very very slow response.

      Like

  21. First off i would like to thank you for all the hard work you do on trying to provide answers and insight to the SSI SSDI system that always seems to have one hanging in the lurch .
    I am Currently on SSDI and have been thru two short forms Disability Update reports. So i get my reports every three years.My last Update report came in the beginning of June 2017 i promptly filled out a extra page of symptoms/conditions .I understand this elongates the process of me receiving that magical SSDI letter telling me that we are not reviewing my case at this time .So my letter arrived on the begging of November 2018 almost a year and 6months later stating no need to review . So this leaves me wondering on the time frame the next future Update reports get mailed out .In in my case would it be from the date going forward of November 2018 for my next review ? Or from the date of June 2017 when i initially filled out the report ? I understand there is no exact science behind the way SSI works.
    Thanks a bunch.

    Like

    1. Thank you for this report. A year and six months it’s crazy long, I am glad it worked out in the end. I’m sorry I don’t know the answer to your question, it’s a good question. If you call Social Security they may be able to look in the computer and tell you the month and date of your next review. That does not mean it will actually arrive at that time, as reviews are often late.

      Like

      1. Thanks sleepygirl ! Back to that hidden mystery time frame we all know and love !More or less when on disability one plans around Update Reports. Take care for now .

        Like

  22. Hi Sleepygirl,
    Did you have a good Thanksgiving? Was cold as hell here on turkey day. Mine kind of sucked, had to put our cat { Puddy Tat} to sleep on monday. He developed auto immune disease and the vet could not stop the white blood cells from destroying the red blood cells. We tried everything. Having to put a pet to sleep is just plain awful. Christmas would have been his 13 birthday.
    Hope all is well with you
    Bobby

    Like

  23. Govt is so dumb. On the form they show only your last 4 numbers of your ss number. then right below it, they show the full number lolllllllll. How could nobody designing the forms, not catch that

    Like

  24. Hey Sleepygirl,
    How does this look to send in?
    1.PAIN MANAGEMENT

    2. MRI NECK BACK

    3.SPINE CHECKUP

    Also do i use i or I? how does the computer know its an i and not a small L.
    SHOULD IT BE mri neck back?
    Thanks for all the help
    Bobby

    Like

  25. I have been on Disability since 2002. I am 59 years old. I received and responded to the short CDR aroundv2 1/2 month ago. I have not received a response yet. Is that a bad sign ? I am worried it is taking so long.

    Like

  26. Thanks Sleepygirl.
    One final question they want to know about doctor visits from october 2016 to the present. Does their present mean the date of october 13th 2018 that is listed at the top of the form or does the word present mean, until i send the form in {before the 30 day deadline is up} Cause i want to use my visit to the doctors on this tuesday the 23rd. If not i will just list a different visit date. am always at the doctors anyways,lolll
    Thank you
    Bobby

    Like

  27. SleepyGirl,
    Is this a good way to fill out form for last 3 doctor visits
    1.pain management
    2.MRI – neck
    3.neck – back {saw my surgeon and he sent me for an updated mri}

    I have done this a bunch of times, but still get flustered and confused when filling out this form.

    Thanks for the ongoing help
    Bobby

    Like

  28. SleepyGirl, i dont see anything on the form about how long you have to fill it out. 30 days would work out perfectly. I wasnt sure about the MRI thing. Guess i could just list it like this: MRI NECK BACK
    Thanks

    Like

  29. SleepyGirl, 2 other questions.
    1. I got form on oct 12, i have a pain management appt on oct 23. I would like to put that on the form. is 11 days to long to send form back?

    2. in sept i had an updated mri done on my back and neck. Is that considered a doctor visit for treatment?

    Thanks again for the help
    Bobby

    Like

    1. Hi bobby,

      1. Does the form say how long you have to return it? My memory is you have thirty days. You can call and ask if you wish.

      2. I haven’t seen a specific reg about this, but I’ve seen other people list medical testing on this form without problems.

      Like

  30. Thanks Sleepygirl. Yeah am not gonna worry about that, just strange that my score could change like without any real reason. Am more stressed out about marking worse or same, even thou worse is the correct answer. I just dont want it to get spit out for the long form, that one is a pain in the ass,lolllll

    Like

      1. Hi Sleepygirl,

        I just wanted to give an update!

        So as I said in my last post here I sent back the short form on August.18,2018 and yesterday October.19,2018 good news came as I got the very small letter letting me know that they will not be reviewing my case at this time and they do not need to contact my doctor. So it took exactly 2 months and 6 days.

        I do have two more questions for you if that is ok.

        Is it likely that I will come up for a possible review every 3 or so years going forward now?
        Like I said before my very first review was the big form and it too about 7 and a half years. And the second one was 3 and a half years.

        Also what are the odds that I will get the the short form again the next time I am up for a possible review?

        Thank you for all your great info as well you are a big help 🙂

        Like

        1. Congrats. 🙂

          Reviews are often late, and the reasons are a mystery, so there’s no way to know.

          You can check the code on your short form, as mentioned above, to see when it should come, but who knows when it actually will.

          Like

  31. I was wrong about my profile score, in october 2015 it was L / 0024 and now in 2018 its L / 0129 How in Gods name could my score increase like? I so want to call SS up and ask them, but afraid that might cause a full review. Wonder if the new admin is just cranking up everybodys score to try and get rid of them

    Like

  32. Thanks Sleepygirl for the answers. Nope havent worked anymore since 1999. I thought it was pretty strange when i saw that, cause i would have thought it would stay the same or go even lower. Checking worse scares me for some reason, even thou its 100 percent the truth. Just had an mri done on neck and back last month, discs are worse. Thanks again bobby

    Like

  33. Am 56, been on ssdi for 17 years due to a neck and back injury. I get the 3 year short form like clock work. I have 2 questions. In 2015 my profile score was L / 0065 now in 2018 my score is L / 0129. what would make my score go up and not the other way? just being 3 years older usually makes a persons health worse.
    second question is, my discs have gotten worse in my neck and back. I want to check the WORSE box for condition but am afraid that will spit the form out. Should i just put down same. Thanks for any help with these questions, its greatly appreaciated. Bobby

    Like

    1. Hi bobby,

      I don’t know the answer, unless you went back to work? I can’t think of why they would change someone’s profile score without doing a full review. Maybe it’s mistake. It’s a very small change anyway.

      I think you should just tell the truth. It won’t hurt you to check worse. Hope it goes great.

      Like

  34. Hi, I have been on disability for about 2 years and the approval letter stated that I was approved with a possibility of improvement and that my first review would be in 18 months. I am not positive what I was approved for as I listed both physical and mental but assume I was approved for depression and intermittent explosive disorder also I recently received a review “long form” exactly the time frame that they stated. Two questions I have.
    What if a doctor says they do not participate with anything regarding patients disability because it’s too much paperwork. How should I handle this? Should I be worried about this? Also where can I find the diagnosis code and profile code if I received the long form? Would it be on the approval letter or anywhere else. I really don’t want to call and ask them why I was approved for.
    Thanks a bunch!

    Like

    1. Hi Jack,

      A lot of doctors are not willing to fill out disability paperwork. SSA doesn’t require doctors to fill out paperwork for reviews, so if your medical records are accurate about your symptoms that is usually all that is needed.

      If you want to read your records, more info on collecting records is here: https://howtogeton.wordpress.com/2017/03/11/how-to-collect-all-your-medical-records-keyword-all/

      The records that appear online or that are handed to you at the front desk are usually not full records.

      If you feel you might need more support from a doctor, some of our readers have had success at getting doctors to fill out paperwork even when they said they wouldn’t. Hope this helps: https://howtogeton.wordpress.com/2017/01/23/how-to-get-your-doctor-to-fill-out-paperwork-when-your-doctor-wont-fill-out-paperwork/

      I may be wrong, but I don’t think the codes appear on the long form. I hope it goes great for you.

      Like

  35. should i be worried if i said i havent seen a doctor in 2 years my doctor retired ,,,he didnt refer me to anyone else,,, i have RA REALLY BAD ITS SPREADING ,,EVERY WHERE, my doctor said i will never be able to work again i told them that. can you tell me we might happen now, ?

    Like

  36. Hi all, great info,…I just got the ‘short form’ of Disability Update report, my main condition I went on SSI for was hiv related, non hodgkins lymphoma which was debilitating, went thru 6 rounds of chemo, and did survive (back in 2004-5), am a little better, but still some conditions related to AIDS, and have not gone back to work since. I’d like to stay on if I can and looking for tips and advice on the short form. Thanks, will look for those codes. Has anyone sent the short form in and gotten a response? If they dont plan reviewing you further after you turn in the forms, will they send you a ‘confirmation’ letter telling you your benefits will CONTINUE, until next time or reporting? Like another person here, its been 14 years and I think this is the first time I got the ‘Disability update report’, since recently some slight changes with HIV poz persons, getting them back into more regular reporting.

    Thanks for all your help 🙂

    Like

  37. Hi,
    I have been on SSI since April of 2007.

    My first ever review took about 7 and a half years to get which was the Long Form. And now 3 and a half years later they send me the short form which I mailed back the other day. But now I just found out about these Secret codes.

    And unfortunately I do not remember which codes I had 😦

    If by chance it was “H” which I hope it was not am I very likely to get the Long From in about 3 months or so? My first review was the long form so I was happy to get the short form this time around. But after reading the info here even though I got the short form this time I still may have to go though the long review again if my code has an “H”.

    Thanks

    Like

  38. I have primary code 9300 but I can’t find it at the site. I can only find 9330 which is for CFS, but I think the diagnosis I got SSI for is anxiety disorder.

    Like

    1. Hi China,

      This is a good mystery. I cannot figure it out either. All I can think is that maybe it is a typo… Unless there is some other form of codes that we don’t know about. If Chronic fatigue syndrome is one of your diagnosis, then my guess would be that it is that and it is a typo. But if not, then I really do not know !

      Like

  39. Hi, I filled out the short form for my adult daughter who is 34 and has been receiving ssi since the age of 16. She only had one reveiw 3 years ago which was a long form and now recieved a short form and is a letter m and a code for bi polar even though there are numerous issues. Thank you for all the info you provided. Will she now go every three years or does it bounce around from long form to short and back again? It makes me a nervous wreck.

    Like

  40. Hi, I have a question on changing from 3 to 5+ year reviews. I was over 51.5 at my last 3 year review and they sent me the short form~ low medical improvement. Thought I would be moved to 5 year based on my age but instead have another 3 year. Do you think I’ll be moved to 5 to 7 year CDR at if I’m over age 54.5 when I complete my next CDR? (Ultimately I’m wondering when I’ll move from MIE to MINE for federal loan purposes) Thanks for any help!!!

    Like

    1. Hi Sara,

      I have no way to know if they will switch you, but you don’t need this for a student loan disability discharge 🙂

      You just need a form filled out by your doctor. that is how most people do it. Hope it goes great for you.

      Like

  41. Regarding the “review cycle”, 3, 5 or 7 years…

    Hi,

    My form has 3 for the review cycle, however 12 years went by from when I first got on SSI until when I received my short form update review to do. I noticed you said it could go a couple of years beyond the review cycle number before you received a review by mail report but…12 years?

    Just curious on feedback about this. When I was approved I was told my review cycle would be every 3 years (as the form states) but that doesn’t seem to be the case as it was 12 years…unless SS is that backed up?

    Thanks

    Dayvid

    Like

  42. Hi, I have the Disability Update Report and need help with section 5 (the reason for visit). Please respond if you see this before I post a bunch of my info.

    Like

    1. What is your question? Most people just write down the diagnosis. I don’t have a lot more information on this because the SSA policies don’t say anything about this question 🙂

      Like

  43. I do not see any codes or anything as you describe on the long form I was sent. I received a 13 page long form SSA-454-BK (04-2014) EF(04-2014. The only other numbers are: omb No. 0960-0072, at top right used as a header. None of those numbers seem to coorespond to the info you gave for diagnoses.

    Like

  44. How important is a secondary diagnosis code? Say someone has a diagnosis code of 0430 for symptomatic HIV infection but no secondary, is it just not necessary because multiple symptoms are implied in the primary diagnosis code?

    Like

    1. Hi Michael,

      Some people are approved for just one condition.

      I agree with you, most likely the first condition had enough disabling symptoms that they were approved based on just this and no more was needed.

      Or they may have met the criteria for a listing in the Social Security blue book.

      Like

  45. Hello.. I have been searching every where for an answer.. I have a profile code of M and a profiling # 0000.. Which I have read is good because it is low. How do they decifer M with a low number I am confused? Also I have been on SSD for over 7 years now and nothing has improved only gotten worse. I know I am not at the age of 50 (I am 40) for the statement on conversion. But shouldn’t my years of being on it and no improvement count to convert from MIP to MINE?

    Thanks ❤️

    Liked by 1 person

    1. Hi Sugar Blossoms,

      As far as I know, the profile code is just used to determine which form they will send you and whether you will be sent a long form or not. It won’t impact the final decision.

      It’s not common for someone’s MIP status to be changed. I’ve only met one person who told me they got a letter about a status change.

      I would not worry too much about these things. Just keep up good medical records, that is what will matter for passing reviews. ❤

      Liked by 1 person

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