How to Escape the Information Black Hole

Art: Robin Mead

Let’s face it, the folks who answer the phones at Social Security don’t know all the rules and will sometimes tell you weird, random, funny, disappointing or untrue things


It’s not their fault. There are a lot of policies over there. It might not be possible to learn them all. But, boy, does it put you in a pickle. Here’s some ideas for solving this problem:

Post your question below.

We may or may not know the answer. If we know it, we will tell you. Please bookmark the page and check back. Comment notifications sometimes go to your spam box.

Research the policies yourself.

All policies are available online at the Social Security website. Some are quite confusing, though. This is the Social Security disability website. It is medium-level confusing and includes most basic information. This is the Social Security policy manual. It is high-level confusing and includes everything you want to know, but very little you can actually understand. The policy manual has a search feature that has not worked ever. If you want to search go here instead.

Figure out who is handling your case.

If you are still applying or going through a disability review, your application may travel around and visit different offices. You can call and ask for the contact information for the person or office handling your case right now. They may give you better information.

Request reconsideration.

If they tell you no to something you think they should be saying yes to, in many situations, you can fill out this simple request for reconsideration form and then they will have to reconsider the decision. We are not promising it will work, but they will have to at least read and consider your request and give you an answer.

Talk to a lawyer.

If you are currently applying for disability and would like a lawyer, here’s where you can look for one: How and Where to Find a Good Disability Lawyer

Get a free consult.

Many disability lawyers will give a free consult if you are considering hiring them.

Warning About Lawyers. 

Disability lawyers can be very helpful in knowing any policies about medical approvals. If your question is about how to show Social Security that you are disabled, a disability lawyer is a great person to ask. However, most lawyers do not know a lot about other areas of Social Security. If your question is about SSI financial policies, SSI living arrangement rules, or work regulations or other technical areas, please double check anything you are told by your lawyer.

Ask on Avvo. is a website where disability lawyers will answer a question for you for free. It’s really cool how the lawyers show up and answer your question! See note above though. Here’s the place where you can Ask a Question on Avvo

Ask on Disability Advisor.

Kay Derochie used to work at Social Security and is now kind enough to answer people’s questions. Make sure to save the webpage and check back throughout the week. She will answer your questions, but you won’t be notified that an answer is there.

Ask on Social Security Disability Resource Center.

Tim Moore used to work at Social Security as a Disability Examiner (that is the person who reviews the application decides if someone is disabled). If you have a question in this area, he is kind enough  to answer most (but not all) questions.

Contact your congressperson.

If Social Security has made a policy mistake or administrative mistake on your case, contacting your congressperson can help a lot.

Contact legal aid.

If you are having a real problem that may cause you to lose your benefits, or if your benefits are being taken away, in some areas your local low-income nonprofit legal aid center may be able to assist.

Call disability rights.

Contact the nonprofit disability rights groups in your state. Sometimes they are able to provide free assistance with legal matters.

Learn these sentences.

If someone has told you “No” or “Not Possible” or “You Don’t Qualify,” there are a few simple sentences you can say that can really turn things around!

Learn the SSI financial regs.

If you have a complex question about SSI, be prepared to be told the wrong answer. The best thing you can do is learn the SSI regulations for yourself.

Call back and ask a different person.

If you call Social Security again, you will probably get a different answer. Of course, you will still have to figure out which answer is correct.

Try calling your local office.

Try your local office instead of the national 800 number. Sometimes you will get better intel this way. Not always.

Talk to your SSI worker

If you are on SSI (not SSDI), there is someone at your local office handling your case. You may not know this, but they exist. Ask for the name and contact information for that person.

Forget about it.

If the question is not very important, and does not affect your benefit, just let it go. Life goes one.

Solve your problems.

If you are having a problem and can’t figure out the solution: How to Solve Your Social Security Problems

Ask to speak to a supervisor 

Some people are afraid to ask for supervisor because they don’t want to complain. Your request doesn’t have to be complaint. You can just be friendly and polite. Sometimes supervisors have more training and know more information. They may be able to assist you.

Set up an appointment

Request to set up an appointment with a service representative. You can have a phone or in person appointment. For SSI issues, request an appointment with a “title 16 service representative” (title xvi). For SSDI issues, request and appointment with a “title 2 service representative” (title ii).

Show them the rules.

If you find the correct policy and you believe they are not following it, bring or mail a copy to the person you are dealing with and ask this policy be applied to your case. Some people at Social Security are nice and do want to help, but there are too many regs and they simply don’t know them all.

Don’t take no for an answer.

Never ever accept if they say no to yo u about something over the phone or in person. It is very common for people to be told that something cannot be done or is not possible, when really it can be done or is possible. Unless it is in writing, it is not a real “no”.

For Medicare Questions.

Many people report that the SHIP program was helpful to them in figuring out Medicare plans.

If you are told you can’t apply.

If you were told you are not eligible for disability, don’t give up yet. Look here.

Do not give up!!

If the issue is important do not give up.  Keep appealing, calling, asking to speak to managers, contacting your congressperson, and requesting reconsiderations. If someone tells you that you are not eligible or cannot apply or will be turned down or can’t get whatever it is you are trying to get, don’t give up, persist and find out more.  Read The Story of Sage. It will give you hope.

Thanks for Reading

🌷 This page is part of the free online guide: The Sleepy Girl Guide to Social Security Disability 

🌷 Learn more about this topic here: Everything No One Ever Tells You About Living on Social Security Disability

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

🌷 Page Updated: 8/1/19

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🌷 Please let us know if any links on this page stop working. 

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57 thoughts on “How to Escape the Information Black Hole”

  1. I am glad I found your blog! Thank you. I just received a letter saying I owe $32,000 for payments my mother received when I was eight! I am crushed. Do you have any advice for me? I can’t seem to find an attorney anywhere that deals with “overpayments.”


    1. Hello Heather. My name is Chris. Sorry to hear about your insane situation. I’m here looking for help for my nephew who is in exactly the same situation as you. SSA says he owes them for money his mother received for him when he was a child. His Father was the disabled person. They took his tax return! The whole thing is insane. I’m actually an attorney and will be helping him. I would love to know about your experience so far. It would be great if you could contact me on Facebook so we could message each other. I might be able to give you some help with forms or advice for representing yourself. My FB page is


      1. Hi Chris! I sent you a message on Facebook. Your profile settings wouldn’t allow me to add you as a friend, but feel free to do so for me. My message probably went into your spam folder since we aren’t connected, so you may have to check there. I’d love to give you an update on my experience so far.


    1. Hi Dee,

      I’m sorry that I don’t know how overpayment garnishment works.

      Usually people will work out some kind of payment plan, or they will try to get the overpayment waived all together.

      In case helpful:

      As long as you are following the payment plan I don’t think there’s any reason for them to garnish.

      If you are on SSDI receiving an inheritance should not be a problem. However, if you were on SSI it may cause your disability check to lower or stop for a while.

      Please let me know if you have more questions. There is some more information on things that will or won’t lower or stop SSI checks on this page:


  2. The Sleepy Girl Guide has been my “Bible” and am grateful for your translating all things that hurt my head into language easily (and enjoyably!) not so scary!
    Thank you Sleepy Girl, you are a ROCKSTAR!!!
    Happy to report that just today (05/09/2019) I was approved at the Initial Stage but am hoping you can provide some guidance on if I should proceed with an appeal regarding their decision to adjust my ONSET date to 04/15/2019 and NOT my ONSET date of 05/06/2017. I started Disability process on 08/28/2018 and submitted my listing of PTSD under the “Blue Book’s” Mental Disorders 12.00 . Because of injuries I sustained in November 2018, after being the victim of a brutal Home Invasion, I sent the new medical records to DDS meeting requirements of a SECOND Listing under Musculoskeletal System 1.00 with reports and MRI’s showing Nerve Root Compression, Bulging Disks, Cervical Radiculopathy and Degenerative Disk Disease. All of my chronic neck pain is a direct result of the attacker strangling me, trying to break my neck 11/27/2018. In January of 2019, my DDS sent me to their Doctor (thanks to you I knew exactly what to expect!) for Physical Consult and a week later for a Mental Evaluation. Fast forward to 04/15/2019 when MySSA app was updated with new status stating “Benefit app under Quality Review” and on updated again on 05/06/2019 with message of “Determination for Medical has been processed and SSA will contact me if they have any questions.” I crossed my fingers and hoped for the best and it was this morning I got a call from Soc Sec branch office and was told (OVER THE PHONE!) I was APPROVED and needed to bring them ID. I cried on my knees for 30 minutes thanking God then met with lovely Advisor at SS office this afternoon. She wasn’t able to print my Award letter (it will come in mail) but stated I was approved for Medical listing with onset date of 04/15/2019 and my benefits won’t start until November. I never dreamed I wouldn’t get retro back pay from 5 months after my onset date of May 2017 and now am facing the loss of 17 months of Lump sum payment that would get me out of ungodly debt. I am terrified that I could have my determination overturned at Appeal and don’t want to take any unnecessary risks so I ask of you to share some of your wisdom and guidance as to what path I should follow. Many, many THANKS! Kelly


  3. Hi, I just found this blog today and have already read and bookmarked dozens of posts!
    I applied in person for both SSI and SSDI last week. I initially put my onset date as the day I was diagnosed with bipolar disorder for the first time (6/12/12). Or so I thought! As I discovered in some of my old records, I had been diagnosed way earlier (in 2005 when I was 21)! I have never been able to hold a full-time job more than 6 months, and have even struggled to hold onto part-time jobs because of my condition. Now I’m wondering if I should change my onset date and try to get the “disabled child’s” benefits. Any advice would be greatly appreciated!!!


    1. Hi Sabrina,

      Do you still have copies of your medical records from 2005?

      Also, do you think that disabled adult child benefits would be significantly more than your SSI check? (DAC is usually 50% of one of your parents benefits or 75% when parent passes away)


  4. I was approved for ssdi (took 4 years). My backpay was quoted as one thing, and then suddenly I get a call from the social security office telling me they need to interview me to see if I qualify for ssi benefits. (I had no idea this was coming, my lawyer never said anything) Then they approved me for SSI too, for a time frame that my SSDI backpay already covered. So I ended recieving less backpay from SSDI, BUT I was told I will recieve that chunk of backpay from SSI instead. Even though I don’t qualify for monthly SSI benefits going forward because of my SSDI. So my question is this, can I assume this is one more tactic on the list to avoid paying me this money? I’ve already received my ssdi backpay and two monthly payments but nothing from SSI and no communication other than the initial approval letter.
    I’ve tried contacting the ss office multiple times to ask when I will get the SSI backpay. I can’t get the person assigned to my case to call me back. And the website only shows my SSDI information. I have trust issues after years of ridiculous stalling tactics, human error, missing paperwork, missing postal mail and email, a judge waiting 3 months to sign the decision even though my lawyer was notified of the fully favorable decision. Is this typical? I probably sound greedy, but I just went 4 years without the income to pay my mortgage. On a house I owned and paid for on time for 6 years before I needed to apply for disability. There’s a big difference between what I was told i would recieve and what i have received so far. (It’s over a year of benefits) That difference is the difference between having a home or not having a home. Sorry for the rambling. I guess my questions are:

    Is it normal for it to take this long for SSI backpay?

    Do people usually get backpay from both ssi and ssdi?

    Is it possible that I was misinformed and will not be recieving SSI backpay?

    Who else can I call about SSI?

    Thank you so much for your time.


    1. You can call your congressperson and ask them to inquire on your behalf to see if you are owed backpay.

      Unfortunately, I would not pay attention to anything anyone said about how much backpay you would or wouldn’t get. If you’ve done the math and have real reason to believe you were paid the wrong amount, it might be worth pursuing. Hope this helps.


  5. Hello I am the payee of my under age child we receive over payment letters all the time. First of all I wasn’t familiar with the rules at all what so ever and I thought she was on ssdi not SSI. We are in a jam. A few years ago I opened up a checking account at my bank and I also opened up two savings account with my name on it and also my daughter who receives SSI and my other daughter who receives survivor benefits . They just sent me an over payment letters for 7 thousands dollars to repay. I didn’t know that there was a limit of resources and nobody ever explained or said anything to me about anything. I was just saving money in these savings accounts income tax refund checks and wages from my job. I didn’t know there were other types of accounts I could have opened so they wouldn’t count like an able account. The money in these savings accounts are not my children’s money. It is my money from prior income tax refunds and wages from my job. I was saving for college or to maybe one day purchase a home. I thought I was doing good and trying to look out for our future. And now they want me to repay 7 grand. I feel like filling out the waiver form is me admitting something that is not true. Any advice. Please help. Thank you


  6. I am on SSDI. My now 25 year old son was collecting under my record due to his Anxiety & Aspergers. A few years ago they did a medical review on him and kicked him off. He filed an appeal and continued to collect knowing that if he lost the appeal they would want the $ back. He lost. Then his lawyer got the decision overturned due to “malfeasance of the administrative law judge” I was told. (I can explain more.) So then we waited for a hearing. Meanwhile my son, who now had no health insurance, deteriorated. He came down with schizoaffective disorder (bipolar manic type mixed with schizophrenia). While psychotic he committed 2 “burglaries” in the middle of the night. He kicked in the doors of 2 nearby houses, stepped in and ran away. This had to do with finding a portal and being chased by “the machines.” He was having visual and auditory hallucinations. He was arrested and spent a year in jail with a few months in a forensic psych center. He was put on lithium etc. I hired a lawyer etc. Finally he was released via NGRI (not guilty by reason of insanity) and is on Supervision. Meanwhile Social Security sent ME a letter telling me that they cannot get $ out of him so they want me to pay back the 23K he collected while his case was under appeal. (They never tried to get $ out of him they just skipped to me.) He had a hearing last month. The ALJ was very hostile. We don’t know what the decision will be but there are medical records up the wazoo about his schizoaffective disorder. Am I right in thinking that Social Security has made a Policy Error by sending an Overpayment Notice for a case that is still in the process of being heard? If so, do you know what documentation in the SSDI POMS manual I can quote? Thank you!!!


    1. Hello Patanna,

      I am so very sorry to hear what your family has been through.

      Unfortunately, these questions are over my head – I don’t know these policies. I can certainly try to look to see if I find something helpful in POMS.

      If you don’t mind a few questions:

      – Have you tried contacting your local legal aid program to see if they can assist? Sometimes they can be helpful with overpayment issues.

      – Is your son still appealing the same case, or did he start a new application at some point?

      – Has there been any issue come up around him getting payments while he was in jail? Do you know if SSA was notified about him being in jail? And if he continued to receive disability checks at that time?

      – Are you his representative payee? How long ago did you receive the overpayment notice?


    2. I’m going off memory since I’m now not exactly sure what you wrote…

      – legal aid programs vary a lot by area, some are very helpful, others are overworked. Some will not give any kind of help with disability appeals, but may help with overpayment issues, so if you call, perhaps state that as the reason.

      – If you are still within the timeframe to appeal, you may wish to appeal the overpayment, instead of working out a payment plan. I could be wrong, but I don’t think you pay while appealing. On the appeal, you could include a copy of the appeals council decision and write the quote about the judge malfecience.

      – if you have missed the appeal deadline, you could look here:

      – I do not know these rules well, but I think that once an ALJ issues a denial they start to collect overpayment. I did not realize that they would go after the person with the earning record 😦 I’m so sorry this is happening.

      – I’m glad to hear he was not collecting while in jail. One less thing to worry about!


    1. Ok.

      If the funds are designated as earned income, then you’d want to report this to SSA.

      I’m not certain if they will consider participation in a medical trial as working, but even if they do, I don’t think this type of work would be a problem for an application – that is just my opinion, as I said I haven’t seen any specific regulations addressing this.

      Sorry I don’t have more specific info on this.

      Working while applying:


  7. This is totally not the right place to ask this but …. I’ve applied for SSDI. I’ve sent in my medical paperwork and my records have been collected by them. So, I’m just waiting to hear from them. In the meantime, I had expressed interest in a clinical trial and was contacted by the trial/study coordinator and they think I’m a good candidate. There is payment for this trial. My question – would participating in this trial jeopardize my application for SSDI. The trial requires several visits and one overnight hospital stay. I could use the money but don’t want anything to hinder my SSDI application.


    1. Hi judy,

      I don’t know if there are any specific rules for this, but I have never heard of anyone having problems with their SSDI because of a medical trial, especially if it is a one-time thing. Is the payment above $1180?

      Some trials give people reports with their outcomes and some don’t. If you collect any medical documentation from the trial, you can submit it to ssa.

      If the trial payment is earned income, then you would want to report that to SSA. For SSI, it might lower your backpay. For SSDI, no financial effect. For SSI, there are some exceptions to the backpay here:

      hope this helps.


  8. Thanks for the wonderful information on your site. It has been extremely helpful to me.
    I have a unusual and specific question about excluded resources for SSI and I can’t find an answer.
    My 20 year old daughter just started receiving SSI. Her father set up a Coverdell Educational Savings Account when she was little. He is the account owner and she is the beneficiary. During her financial eligibility interview at the local field office, the information on the account was recorded and we were told that the $15,000 in the account is an excluded resource. (SI 01130.460)
    Since our daughter will not be attending college, we would like to move the money into an ABLE account. I don’t understand the rules of excluded resources, and can’t find how to move the money without impacting my daughter’s eligibility.
    Here’s the plan, her father would rollover the money from the Coverdell ESA to a 529b plan, also known as a Qualified Tuition Program. Qualified Tuition Programs are also excluded resources for the beneficiary. (SI 01140.150)
    I don’t know if moving the money by rollover is permissible. My daugher would never have access to the money. CollegeInvest, the Colorado 529b plan manager, would pull the money directly from her Coverdell ESA. My husband would still be the account owner, with my daughter as beneficiary.
    Then my husband would direct the movement of the money again, from a 529b college savings plan to an ABLE account, with our daughter as the beneficiary.
    Will this impact her eligibility?
    Any answers or hints on where to find an answer would be much appreciated.


    1. Hi Cindy,

      You’ve done some excellent research.

      I have to say upfront that I am not an expert in this, I clearly know less than you 🙂 so please double check what I’m about to write.

      What I’m seeing from the regs you posted is that a rollover is considered a “transfer of resources” Social Security really does not like it when you transfer resources And it can make you ineligible for up to three years.

      What I’m about to write make not be correct so please double check: I wonder if it might be better to just distribute the money to her. It looks to me like it is then treated as a gift.

      Obviously, she would be ineligible during the month she received the gift.

      However, once they are spent or in an able account, my understanding would be that she would become eligible… I assumed that would be quicker than three years.

      They may ask for receipts. So it’s a good idea to keep receipts from anything she spends, and do not give any money away.

      Able accounts are fairly new and the rules are not fully developed. I have not seen any rules indicating that putting your own money into an able account would be considered a transfer resources. However this would be something that would be good if there was some way to double check – I don’t know how!

      Hope this helps a little.

      F. Rule for rollover and transfer of Coverdell ESA funds Funds in a Coverdell ESA may be transferred or “rolled over” to a member of the beneficiary’s family. When a designated beneficiary “rolls over” funds in a Coverdell ESA to a family member, the rollover is a transfer of a resource for SSI purposes.


    2. after writing the above, a problem dawned on me….. I don’t think she can open an ABLE account until after she is approved for SSI. However, if the money is now excluded, she could go forward with the SSI application now, and maybe deal with this later?


      1. Thank you so very much for the quick and thoughtful answer. I hadn’t even considered a distribution as a gift. That should work much better. I will start reading some more regulations.

        My daughter should be able to set up an ABLE now because she received her SSI Notice of Award letter last week. She already received her first installment of back pay, and will start to receive monthly deposits September 1.

        My husband thinks the SSA should have a help desk or a way to receive pre-authorization, like an insurance company, for those of us trying to understand and follow the rules. I don’t think that will ever happen.

        We are extremely grateful for advocates like you Your website and all the information you have compiled is amazing. Thanks so much!


          1. Thank you for your continued help and thoughtfulness. I will let you know what we decide to do and how it works out. It might be months from now as I am a cautious person. It took us a long time, almost 2 years, to help our adult daughter get SSI, and so I will probably leave it alone for a little while.

            As for the rent, we have a rental contract with our daughter who lives in our home. SSA determined her living arrangements to be Category A, so she will receive the maximum benefit. Your articles on rent had excellent information and examples which helped me understand the rules much better. Thank you.


  9. Sleepygirl,

    What a wonderful world you’ve created here. I’ve looked for a resource like this for years. Mesmerizing.

    Some questions:
    1. Can SSA (SSDI) find me able to work lying down if I am not able to sit or stand (and thus deny my SSDI)?
    2. Can SSA deny my SSDI if I have not had a surgery that’s been discussed by my doctors as an option but I would not describe as “prescribed” as it’s been given only 50/50 odds of success?
    3. Do you know any websites similar to yours that focus more on musculoskeletal disabilities (e.g. spine injury)? I’ve been looking for sample doctors letters for this but haven’t found any.


    1. Hi Pi,

      Thank you for this great post.

      So, I don’t know the answers! But my thoughts are:

      1. I have never heard of working lying down coming up as an issue in a disability case.

      2. I don’t know the answer to this… it may depend how/if it is written about in your records. If you have a doctor who feels that the surgery is not worth the risk, you could ask them to write that down in a letter or in your chart notes for you – that they are not medically recommending surgery for you at this time due to low odds of success and risks of surgery, etc. You may not need that, but it doesn’t hurt to have. It doesn’t have to be from ALL your doctors, just one.

      3. I do not know of other sites for that, but you could check the blue book listings for musculoskeletal

      hope it goes great for you ☀️💛


  10. Hi ,I’m new to this site and I like it. It’s very informative.
    I have recently applied for SSDI. I suffered from cervical and lumbar radioculopathy as well as bilateral carpal tunnel syndrome ( which I had surgery for both already) any hiw my main complaints ailments that affect with work is PAIN everywhere and burning sensation in my foot, stiffness, spasms. My Dr completed medical source statement and I have submitted everything with most of my records to SSA( application still in furld office) ahead – trying to expedite process for a prompt decision.
    anyhow can anyone give me any insight on how strong does my claim seems?
    Do you think I’m in for the long wait 1-2 yrs to approval? Please reply, tganks


  11. I was born with severe to profound sensorial hearing loss in both of my ears. I recieved SSI as a child, at 3 years old. While, my right ear has always been much worse than my left, at age 13 I completely lost hearing in my right ear and went deaf. After a couple years, in 1996 once my mom started producing a higher income she called SSA to let them know that she was making a higher income that year so she figured that was the right thing to do by calling to let them know. My poor mother who’s first language is not English must have been poorly misunderstood. Fast forward to today, Im 30 years old, nothings changed my hearing disability is still very much alive. While, I did just receive my SSDI reward gratefully very quick just after 2 months, I still have a pit in my stomach because it is sooo off. My onset date says, August 23, 2017 when I specifically told the caseworker several times that I have had it since birth. caseworker kept trying to avoid the fact that I had my disability since birth, instead she entered August 23, 2017…. When I asked her if she could access my history in the system, she seemed very annoyed and then informed me that it has been “voluntarily cancelled,” back in 1996. When I asked her if that makes any difference to my level of hearing ability she just shrugged. I told her that I worked on a 3 month project over the summer time helping my friend with his boat until Aug, 23rd…. So now I am very concerned, my award letter is way off and she even saw that I had SSI since I was a child. Not to mention the lonnggg history of medical records I brought in…..

    Any thoughts on this situation? Is this normal? Is there something I can do? Should I talk to an attorney, call the congressman, call the supervisor, file an appeal?


    1. It is possible to appeal your onset date.

      They should have an appeal form you can fill out. Talking to an ssa supervisor or congressperson’s office sounds like a good idea to.

      Most people do not do appeal onset date because it means they reopen and reconsider the entire decision (so they could reverse the decision). However, I have read that for deafness and profound hearing loss getting approved is not as complicated.

      One thing to consider is whether this changing your onset date would make any difference.

      Depending on the situation, it may or may not matter.

      Do you know if you were approved for ssi or ssdi?

      Here’s the difference:

      Also: one reason to pursue it would be to try to prove you were disabled before the age of 22, so you can qualify for Adult Disabled Child Benefits:

      Do you have copies of medical records showing profound hearing loss before the age of 22? Have you worked and earned more than $1170/month for more than six months in a row since turning 22?


  12. Hi Kim,

    When you first applied at age 27, what were you applying for:

    SSDI – for people who have worked
    SSI – for people who are low income

    Did you go back to work at any time after age 27?

    In case helpful, you can apply for SSI at any time if you are low-income and assets. You do not need work credits. If you are low income right now, you can apply for SSI right now.

    In case helpful: Here is a list of solutions when you don’t have enough work credits:


    1. Thank you very much for the info, I will look into it. I did have enough credits when I first applied. In the years following, I attempted to work at a few different jobs and owned my own business for 5 years, but did not earn enough working credits. You’re correct in that my husband’s income does not fall within the guidelines to qualify, but it is just barely over the limit.


      1. Hi Kim,

        I’m sorry to say I don’t have many good ideas for you.

        One option is to try to apply again and request to reopen your earlier cases.

        You would need to call Social Security and find out when your Date Last Insured was, and then go back and prove you became disabled before that date.

        It is difficult to do because if it was a long time ago, those medical records may not exist anymore – unless you kept all your old medical records – or you could see if Social Security still has copies by requesting your file.

        If you went back to work after your date last insured expired, that would also add an obstacle.

        Another idea is to check your work credits to make sure that the Date Last Insured they have is correct. Usually the work credits are correct, but sometimes things are missing or there is an error. There is info on how to check your work credits in the link above.

        Beyond that I think there is just the obvious things – if you and your husband ever separate (not suggesting you do this!), or if you have gone back to work in the past ten years, then Social Security would allow you to start a new application.


  13. Hi. In 1996 I applied for ssi due to severe fibromyalgia. I was 27 at the time and at the appeal hearing the judge said I was “too young to be sick” and it was denied. Not much was known about fibromyalgia at that time. Ten years later I applied again on the exact same premise. This time I was told that yes, I am disabled, but that I did not work enough in the last ten years to qualify for ssi! It’s another ten years later and I’m wondering if there is a way to fight this to be compensated for the 20 years that I should have been receiving ssi. Thank you.


  14. My sister moved to a new apartment with her 2 gaughters. All 3 have names on the lease.
    My sister and 1 daughter both receive SSI. They get 470/month because they lived with my mother. She passed away now they have their own apartment.
    1- do they each need to write individual checks for their 1/3 of the rent?
    2- how can we get SSI to increase their payments now that they are paying their own rent and utilities.
    3- do they need to request an interview with SSI?
    Thank yiu


    1. Hi Debbie,

      Yes what you have written looks correct to me. If they are each responsible for one third of their rent, that should cause a change in their SSI. Doing it by check is ideal because there is a record.

      They would call SSI and make an interview. they can do the interview over the phone or in person, whatever they prefer, and just let SSA know the new arrangement and keep a copy of the lease.

      Ideally, they would have enough income to start paying their share immediately, but if needed they could also borrow the money to do so with a written loan agreement – from a friend or family or whoever. Then once the SSI comes through I hope they will be able to catch up 🙂

      They can also call Social Services and ask for a reassessment of food stamps. If they are paying rent now, they will likely be eligible for more food stamps.

      food stamp regs are here:


    2. please see my response from a moment ago. I also wanted to say:

      If your sister wants to pay more than 1/3 to cover the rent for her other daughter (the one not on SSI) that is fine too. You can always overpay 🙂 SSI just looks to make sure you are covering at least your share.


  15. I was forced to stop working back in 2007. I applied twice after that, but due to not having a diagnosis no lawyer would help and I had no doctor that would back me, both times. This last time I was granted SSI, which is not enough to even cover the food bills, much less anything else. I haven’t dropped my pursuit to get SSDI, but no lawyer will take me on as, “It’s not possible”, they say. And that’s all they’ll say. Not one will tell me why. Do you know?


    1. Hi carrie,

      I’m sorry to say that it may be too much time has passed since your last job. That is why SSDI is probably not possible now. Social Security decided that your onset date (the date you have medical proof that you became disabled) is too much time after you stopped working.

      Has it been more than 60 days since your SSI was awarded? It is possible to appeal an onset date, but it is risky because they reconsider the entire case, so no one really does it. I do not know if there is a deadline for this kind of appeal, but 60 days is a common deadline.

      I hope something on this page might help:

      How to Get By on SSI:


  16. I have been dealing with ME for over a decade but only recently was diagnosed. I just made my initial SSI appointment to get things rolling and I am very happy I stumbled onto your site. It will be an invaluable resource. I started a blog a couple weeks back to try and cope with some of the emotional turmoil. It’s difficult to cope with chronic illness because it impacts so many lives around us. So, I always feel grateful when I discover gems like this.

    Liked by 1 person

  17. I am glad to have found this site. I wish all of the posts had dates on them. If the post is ten years old, then the info might not be current. If it is a month old, it might be based on current SS rules.

    But, on to my question…my Dad wants to set up a will. My disabled sister is on SSI & Medicaid. We are afraid she’ll lose both if he leaves her money or a house of his. We looked into Special Needs Trusts (which can help prevent her from losing SSI & Medicaiddue to an inheritanceĺ, but the banks want a minimum opening balance of $300,000 to set up & manage the trus. There’s no way that will happen. Any ideas on what to do?

    Also, if she inherits a house, say valued at $175,000, will that make her lose benefits? I called Social Security & can’t get a straight answer. They want to see how the will is worded first. There is no will yet because we are trying to figure out how she can get her share of the inheritance & not lose benefits because of it.
    Thanks for your help.


    1. Hi J.A.

      I only started the site last month so (hopefully) it is current. Thank you for the suggestion.

      You definitely do not need 300k to set up a special needs trust 🙂 You can do it with $1

      You and your dad are quite smart to be looking into these things.

      I think your dad needs to be talking to a lawyer who specializes in Medicaid estate planning, not a bank.

      After it is set up, someone needs to manage it. You can hire a nonprofit group to do this, or you can appoint an individual – usually a trusted friend or family member.

      The house can be put into the trust or the house can be left to your sister. If it is left to her, she will lose ONE MONTH of SSI.

      She must live in the house herself. If she owns it herself, it is a good idea to look into the ssi rent and mortgage regs. If the trust owns it, it would be good to look into regs on who else can live there and how that needs to be handled.

      I will return momentarily.


  18. Do you think it’s possible that an attorney would reject an offer from the SSA for an on the record decision and nit inform me that it was offered? How would I find out?

    Liked by 1 person

    1. Hi Barry

      Is one of these things happening:

      1. You think SSA decided to initiate an OTR. They contacted you or your attorney to send more info but your attorney decided not to send anything in?

      2. You think they offered you an OTR approval and your attorney said no. (Can’t imagine that is true) 🙂

      3. Something else

      ❤ lily

      Liked by 1 person

  19. I just received my SSDI information and my Medicare is causing me to lose my Ssi and they are only paying 551.00 the first month and 665.00 the second month. I have 3 kids and my husband just applied for disability. That is 551 for 5 people to live on and is less than our bills. I’m so depressed and my anxiety is causing major migraine. I hope the information you posted can help me! I don’t understand why I have to have Medicare and Medicaid. We would be approved for Medicaid I don’t need Medicare yet. I’m trying to find out what to do. We need a new house badly! I wanted to use my back pay to get my credit straight and get a loan. Now I’m not sure we can. 😢


    1. Welcome Jenn.

      Congrats on being the very first person EVER to comment on this blog. I sincerely hope you can see this reply.

      Have you looked into a Medicare Savings Program? For most people, this will raise your check by about $100 per month (eliminate the Medicare premiums) as well as pay your co-pays at the doctor.

      For housing, I don’t have any immediate good solutions, but many people on disability get on the Section 8 Housing Voucher waiting lists. When it finally comes up, it can make your rent go WAY down.

      There are some specific things you can do to be protect a disability check from debt collectors:

      Hope this helps. Hope you see this post!


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