How to Escape the Information Black Hole

1231527_10151903836432139_45720598_n-1_pe.jpgLet’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 here on this site. I can’t promise I will know the answer, but if I do know it, I will tell you. Please bookmark the page and check back. Comment notifications sometimes go to your spam box.

Play Twenty Questions. Here are the 20 Questions People Like to Ask Me the most. Along with some answers. Check the list. Maybe your question is there.

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.

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.

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).

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.

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”.

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.

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.

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.

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 the Marine. It will give you hope.

Photo: Harvest Moon by Hattie Pennel Richards

9 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.

      I totally respect your efforts to straighten out your credit. Many folks I have met who get on SSDI go the other direction – screw their credit and use the money to help their families, since most debt collectors cannot take SSDI money. I’m not saying you should do this, just letting you know all the options. The money needs to be handled in a certain way to be protected 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

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