How to Collect Your Records Your Own Damn Self

Robin Mead

If you are applying for disability, Social Security will collect your medical records for you. Or your lawyer will collect your medical records for you.

It won’t cost you a penny right now and you won’t have to lift a finger. Sounds great, right?

Not so much.

If you leave your records to Social Security, there is a very decent chance they will not collect everything. They will just make a decision based on whatever records they were able to get.

If you leave it to your lawyer, you may have better luck, but many lawyers do not collect your records for the first two years! They just let Social Security collect them. (If you read the last paragraph, you know what happens next).

If you are going to a hearing soon, it is much more likely that your lawyer will collect your records. But not guaranteed. Some of our readers have reported arriving at their hearing and discovering missing or incomplete records.

If you are able to collect your records yourself, this is the best. If you are not well enough to do this, that is OK too. If someone in this world loves you, now is a great time to ask for assistance.

If you have a lawyer, you can ask them for copies of anything they have already collected, and then you can fill in the gaps with everything they haven’t gotten.

How to Get Your Medical Records

📍To start out, it can help to make a list of any hospital or doctor you have been to since you became disabled, plus any earlier records that you feel are important or helpful for your case. See below for an idea how far back to go.

📍Ideally, include all emergency room visits, physical or occupational therapists, vocational rehabilitation, clinics, and any agencies where you received services or treatment.

📍If you have been in a homecare program or any other programs where you receive services related to your disability or health, make sure to request these files as well. They may be very helpful.

📍Next up, call or write the office and request a copy of the records you need. The doctor’s office will probably have a release form for you to fill out and sign.

📍Sometimes getting your records is easy as pie. Other times, not so much. Here’s some ideas if you run into troubles:

Sleepy Girl Super Secret Record Tricks

📍Records can be expensive. Here’s some tips on How to Get Your Medical Records without Paying an Arm and a Leg

📍For physical health, doctors are legally required to release your records. If they won’t do it, try this: Make a hippa request. That should do the trick. If need be, you can also file a complaint.

📍For mental health, it gets a bit trickier! Here’s some ideas for what to do if you are having trouble getting psych records

📍It is very important to get complete records with treatment notes. The records you see online or the paper they hand you after an office visit are usually not complete records. Please make sure there are not Secret Medical Records they had not seen.

📍If your doctor is no longer in practice, or for some reason, you can’t locate the doctor or office where you think your records should be, there are some steps you can take to locate your medical records.

📍Try to get everything you can that relates to your illness. You may be able to find good records from hospitals, emergency rooms, home care agencies, vocational rehabilitation, mental health centers, clinics, occupational therapy, jails and community corrections, and school records on disability accommodations. If you had disability-related problems at your last job, human resources records from your job can also help.

How Far Back Should I Go? 

📍 Usually Social Security will start looking at records based on the “onset date” of your disability. That’s the date when you first became disabled.

📍For physical health, they will consider records one year before onset date, and for mental health, they will go back two years.

📍 If you have important records before this time period, you can collect and send them too if you wish. If you send them, they may read them!

What Is My “Onset Date”?

📍 This is a tricky question, because what you think is your onset date may be different than what Social Security thinks.

📍 In most cases, they consider your onset date to be the last day you worked in any way. That’s the last day you performed actual work (not counting sick leave or getting paid while out on disability).

📍 In some cases, they are willing to consider the last month when you worked and earned over $1,170 per month. For example, if you are still working now, they will often look back to the last time you earned over that amount.

📍 Sometimes they chose a completely different onset date for you (for example, date of a car accident or date of a hospitalization or date of why-in-the-world-did-they-pick-this-date).

📍 If the date last worked is a really long time ago, then realistically, there is a limit. Most doctors’ offices destroy records after a certain number of years, so it might just be as far back as you can reasonably find.

Staying Home

📍 You do not have to go in person to collect your records. You can call and ask that any release forms be mailed to you, then you can sign and return the forms.

📍 You can also request that the records be sent to you by mail.

📍 If the doctor’s office or hospital says you have to be there in person, but your illness makes that difficult, you can let them know you are requesting a disability accommodation to do this by mail. If needed, ask to speak to a supervisor and/or ask who handles disability accommodation requests and how you can make a disability accommodation request in writing.

📍 Remember: Do not look at your records online unless you are 100% sure complete treatment notes are included. Most online records only include summaries of treatment notes.

Now What?

📍Once you’ve obtained copies of your records, be sure to review them carefully. If you find any important errors, you’ll want to try to attempt to correct them.

📍If you collected your records yourself, be sure to submit them to Social Security. Please do it the right way to avoid heartache later. How to Submit

📍Even if you submit your records, they can sometimes get lost (or put in someone else’s file!). Don’t forget to contact Social Security and check, check, and double check what is in your file.

Updated August 2017. Please comment below with stories, questions, input or ideas. Please let us know if any links on this page stop working. 📍

5 thoughts on “How to Collect Your Records Your Own Damn Self”

  1. This is a GREAT series that has clarified a lot for me. I am a 53 year old woman with MS, and have an appt with local SSDI (New Hampshire) on Dec 7, 2017. You say ALL medical records since became disabled, but that’s hard for me to figure out. Had first blind spot in 1983, but not diagnosed til 2003. Cut back to part time in 1999, fired from a job in 2013 when someone thought I was drunk due to MS (yes, 2 great lady lawyers helped me settle in my favor). Last job was 10/22/2014 to 10/19/2017, where I had great support and accommodations.
    How far back do I need to go? Started at an MS clinic in Boston in 2003, but for apx past 6 years have seen a top notch MS neurologist. Have been in hosp, ER, and other MDs for 2 c sections, kidney stones, hysterectomy, abcess… but nothing related to my MS. There was one ER visit for UTI (12 hrs after discharge post hystrrectomy) when I couldn’t stand without husband, who had to help me to bathroom. This is more info than I was going to provide, so you get the picture? Is my local MS neurologist info enough? She will happily fill out a functional form, I’m sure, and I was hoping to have it signed by my PCP.


    1. Hi carolyn,

      Great question. So, I am very happy to hear you have support from a good neurologist and pcp. That will be a huge help.

      Usually social security will consider the date you became disabled to be the last day you worked in any way.

      Or sometimes they are willing to consider the last month when you worked and earned over $1,170 per month.

      They usually read records starting one year before that date. (Two years for mental health.)

      Of course, if you have something really important earlier on, you can collect it and send it too if you wish.

      If the date last worked is a really long time ago, then realistically there is a limit. Most doctors destroy records after a certain number of years, so it might just be as far back as you can reasonably find.


  2. Last day worked was 10/19/17. I only worked 2 hrs that day (flu shots at a community center; I am (was) a home health RN. I quit to apply for SSDI, with a great letter from boss re accommodations. I didn’t work >2 days in a row, then only 4 hrs per day. It also has info on accommodations eg having trouble on rough terrain, needing railings on stairs inside and out, unable to work in snowy/icy conditions or on hot days.

    I made $916 in May, but otherwise have made between $208 and $695 per month since March. I can look at direct deposit for info before then, but I haven’t made much since I was fired in 2013 (please see my last post) Do you think they will go back far? Do you think records from my just my neurologist would be enough? It would be very hard to get hospital records since its a lot of walking through the hospital basement to sign the release, and I haven’t been hospitalized for my MS.

    Thanks for the reply!


    1. Hi Carolynn,

      Great questions. I think as much as you are able to collect and send to them could be helpful – if you think the records are significant in showing your disability.

      But if there is something you cannot get that is fine too. Just do the best you can with it.

      You might try calling the hospital and telling them you cannot go in – ask them to mail you the release forms. In my experience you do not have to go in person to get records – request the records be mailed to you. If they do not wish to do it, you can request a disability accommodation, let them know you need to records by mail and ask how to request a disability accommodation to get this. Hope it goes great. ❤


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