How to Escape the Information Black Hole

Harvest Moon by Hattie Pennel Richards

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. I’m not saying it will work, but they will have to at least read and consider your request and give you an answer.

Talk to your lawyer. I have found that lawyers know a lot about some Social Security policies, but little to nothing about other ones. Good lawyers know a lot about the medical rules, hearings, and how to get approved for a medical condition. However, even good lawyers often do not know all the regulations for work incentives, continuing disability reviews, SSI financial rules, and other areas. I’ve heard some weird things from lawyers in my time.

Ask on Avvo. is a website where 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

Get a free lawyer consult. If you are applying for disability, many lawyers will give free consultations. You can contact local lawyers in your area. If you are already on disability, most lawyers will not help you, unless they are doing you a personal favor, or you are paying them a bunch of money. Once again, see lawyer note above.

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. Works best if you can be clear with your congressperson about exactly what mistake was made.

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 group 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 regs. If you have a complex question about SSI, be prepared to be told the wrong answer. Most lawyers and Social Security employees do not know these regs. 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 instead of the national 800 number. In theory, you will get better intel this way. God be with you on that one.

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 or manager and try explaining the problem or question to them. 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 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.

Get a receipt. If you are making a request or submitting something important to Social Security, try sending it by certified mail or (even better) hand delivering it and requesting a stamped receipt. This doesn’t exactly get you an answer to your question, but it does make sure that at least your paperwork does not also wind up in a black hole.

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.


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

  1. 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!


  2. 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

  3. 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.


  4. 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

  5. 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:


  6. 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.


  7. 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.


  8. 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.


  9. 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?


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