Everything No One Ever Told Me About Living on Social Security Disability

treedraft – come back soon


Here’s a list of everything that nobody ever told me after I was approved!

I have been slowly collecting and updating this list, as I cannot find anywhere in the entire internet (or the entire universe) where this kind of list exists.

Please share this list with anyone else you know who is on benefits. It can save you a lot of time a lot of money and a lot of heartache. If you have any ideas to improve or add to this list, please let me know.

Everything No One Ever Told Me in the First Six Months

  • Seven Things That are About to Happen: Approval Letter, Award letter, Financial Interview, Rep Payee Determination, Work Report, Health Insurance, First Check
  • Everything  you need to know about backpay
  • If Your Check Seems Too Low

Pause Now and Learn About SSI & SSDI

  • Before you read anymore, it’s important to know that SSI and SSDI are two different programs. Learn the difference here,
  • Why is this important to know? Because I’m about to tell you a bunch of SSI financial regs.
  • If your ongoing monthly check is going to be SSDI, there is no reason in the world you want to know this stuff. Skip to the next section.
  • If your ongoing monthly check is going to be SSI, then hell yes, you want to know the SSI regs! This is really important and will keep you out of trouble, help you avoid a million heartaches, and possibly raise your check so you get more money every month for years to come.
  • If your SSDI check is going to be very low, you may get both SSI and SSDI. In this case, same deal: Learn the regs now and you will be happy you did later.
  • How the SSI Regs Can Make Your Check Go Up or Down

How to Figure Out How Much Rent or Mortgage to Pay on SSI

How To Follow the SSI Living Arrangement Regs

How to Follow the SSI Food Regs

How to Follow the SSI Housing Regs

Everything No One Ever Told Me About Home Care

  • If you are homebound or need someone to help care for you, you may be able to get free care in your home, including caregivers, nurses, physical therapists, meals delivered, and sometimes home visits from doctors.

Everything No One Ever Told Me About Social Security & Debt

  • If disability is your only income, you probably won’t have to pay or file taxes. However, if you or your spouse has other income, or owes past taxes check out How to Get Tax Breaks for Disabilities

being poor



Dependent Benefits

Other Social Security benefits


If you are on Medicare, you may have a waiting period before the Medicare starts. During this time period, you might be eligible for Medicaid. Contact your state medicaid department. If that doesn’t work, check out: How to Get to the Doctor When You Can’t Get to the Doctor and How To Be Broke & Medicated

  • Once your Medicare starts, you may be charged a lot of co-pays for medical visits, plus your disability check will be lowered by about $100 per month to pay Medicare premiums. Don’t worry, you have options. How to Escape Medicare Fees


  • It’s a good idea to check in with your doc about their retirement or relocation plans. Plan ahead so you will always have a good doctor.
  • online directories
  • medical suppliers


Every so often you will receive a medical review to determine if you are still disabled. It will usually happen every 3, 5 or 7 years. There are two kinds of reviews: Long Form and Short Form.

  • A long form is also called a Continuing Disability Review. If you receive this form, stay tuned. I haven’t written that article yet.
  • If you are having difficulty finding a doctor, practitioner or medical supplier that takes your insurance, both Medicaid and Medicare have online directories.
  • You may receive letters or phone calls from Ticket to Work or back-to-work programs. Don’t be freaked out if this happens. They are not targeting you. These are sales calls. These agencies make money by getting people to join their programs and go off disability.
  • If you ever begin working, it is important to notify Social Security. Notify them in writing and keep a copy of your notification. Send it by certified mail and keep the receipt or bring it to the office and get a receipt. If you ever run into problems, you can use this receipt to prove the problems were not your fault.
  • If you are considering going back to work part time, Social Security has a number of programs to “help” you. Sometimes these work out great. Sometimes not so much.
  • If you are recovered and well enough to go back to work for real and transition off benefits, Congratulations! By all means, check out Ticket to Work and other work incentives.
  • Sometimes Social Security accidentally gives someone too much money. This most often happens when someone starts working, or changes their living situation. Many months (or years) later Social Security figures out their mistake and asks for some money back. If you are ever sent an overpayment notice and Social Security wants some money back, you don’t have to just accept it. You have two options: One: You can appeal. Two: You can request an overpayment waiver. If neither option works, you can continue to appeal more. Please look online to learn more about both options. Feel free to message me if you want to talk it through.
  • Some people choose not to tell others that they are on disability, unless it is someone that they know well and really trust. People are afraid that someone might file a false report on them, especially if they have an invisible illness and don’t “look disabled”. Many people also choose to be careful with what they post on facebook, twitter and social media. This is a personal decision. Do what you feel is best.
  • If you ever run into a problem with your benefits, always appeal. As long as you are still disabled, you should be able to get this sorted out if you are willing to be patient and persistent. You should always appeal at least twice: the first time is called “reconsideration hearing” and the second is called “appeal hearing”. The big mistake  people make is not appealing. Always appeal! You will be able to get it figured out eventually. Feel free to message me if you want to talk it through.
  • If you have mental health issues, many people find it helpful to have an emotional support animal or a psychiatric service animal. Depending on the designation, this may allow you to bring your animal with you to stores, hotels, restaurants, airplanes and to rent housing that does not allow animals. Don’t be suckered in by online services that convince you to “certify” your animal or use their “online doctors.” You can get a letter from your regular mental health doctor and buy a vest yourself on ebay. For service animals, you or someone else will need to train the animal in certain ways. For emotional support animals, no training is required.
  • Most people are eligible for at least $735/month. If you are getting less than this and don’t know why, it may be worth looking into: How Come My Check is So Low?

Thank you for reading. If you have suggestions or questions, post them below or check out How to Escape the Information Black Hole

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