Everything No One Ever Tells You After You Get Approved

Robin Mead

Here’s a long list of everything that nobody tells you when you get approved for Social Security disability.  Please share this list with anyone else you know who has been approved for disability in the past six months. It can save you a lot of money and a lot of heartache.

If it has been more than six months since you were approved, instead take a look at this list of 56 Things You Might Not Know and Might Want to Know If You Are On Social Security Disability. If you have any ideas to improve or add to this list, please comment below.


After a decision is made you will get a letter. Your online account will also tell you the decision. Usually the online account updates more quickly, but not always.

The letter will usually tell you the conditions you were approved for and how often you can expect medical reviews. However, sometimes it doesn’t tell you. In that case you can find out these things here.

Your letter may say you are “medical improvement expected” or “medical improvement possible” or “medical improvement not expected.” Don’t freak out if they write this. It is standard practice and everyone is put in one of these categories. The categories are used to determine how often your case is reviewed.

The letter may also say that they made a medical decision and they still have to make a “non-medical” decision. Again, don’t freak out! This just means they have to get information on your finances to see if you qualify for SSI or SSDI.

The letter should also list your Established Onset Date. This is the date Social Security decided you became disabled. It may or may not be the same date you think you became disabled. If the onset date they choose is the same onset date you asked for, this is called “fully favorable.” If it is a different date, this is called “partially favorable.”

Partially favorable decisions usually mean less backpay. But, what the hell, you are still approved, so life is good.

If you are not happy with you Established Onset Date, you have a right to appeal it. However, almost no one is crazy enough to do this, because it reopens the whole case. If there is a clear and obvious mistake connected to your onset date, you might consider it.

Now that you have been approved, your lawyer’s job is over. Many people keep calling their lawyers expecting them to continue to help with the rest of the process, but this often leads to disappointment.


Before you read anymore, it’s important to know that SSI and SSDI are two different programs. Learn the difference here,


After your award letter, you may be contacted to set up an SSI Interview. This interview will be questions about your finances and living situation. They will not ask you about your health or disability.

If you are poor right now, you should always go to the interview. Even if you won’t be getting SSI in the future, you might still get some SSI backpay.

If you have no income or a financial crisis, you can request an “immediate SSI” payment during your interview. You can request this even if you are applying for SSDI. If you can show some kind of proof, such as an eviction or foreclosure or utility shut off notice, this may help. Here’s a lot more things you probably want to know: How to Handle an SSI Interview

Here’s a list of the most important things people often do not know while applying for SSI: Important SSI Regs


A representative payee is someone who handles your Social Security money for you. Some people have rep payees and some people handle their own money.

If you were approved for mental health, or if you have cognitive problems, they may ask you questions to see if you need a representative payee. What do they ask? Here’s one report: “They asked me: Can I count change? What are the most important bills to pay? Who pays my bills? Am I able to pay them by myself? Do I take medications? Do I ever forget to take them?”

Or they may not ask you any questions. They may just decide this based on what your doctor has written.

If they decide you need a representative payee than someone else will pay your bills, make your financial decisions, and handle your Social Security money. It can be someone you choose, or they will assign an agency to do it. Most people I have met hate having a representative payee, though I have met a few people who preferred this and requested it.

If you do not want a representative payee, you can try bringing them a letter from your doctor stating that you have a severe condition but you are capable of managing your own money. If you have been on disability for a while, this could be risky, because they may see it as a sign your condition has improved. However, if you were just approved, I don’t think this would be too much of a risk. Make sure the letter says you still have a severe condition.


They will probably send you a short work report form. They are checking to see if you worked after your established onset date.

If you did not work at all during this time, no problems. If you worked a little, but you notified Social Security about this, no problems.

If you worked and made more than $1,170 per month, they may look into this more. If you worked and did not notify Social Security that you had started working, they may look into this more. If what you write on this form does not match your IRS records, they may look into this more.

If you earned income but were not actually working (for example, you are co-owner of a business, but do not perform any actual work there), please see: Earning Income Without Working


After your SSI interview, you will receive a letter telling you your monthly check amount and backpay amount. This information may also appear online.

Some people get their first payment before they get their award letter.

In most cases, your monthly check will be at least $735 per month. If it is lower than that amount, it may help you to figure out Why is My Check is So Low? and if there is anything you can do about it.

The amounts listed on your online account may change. Sometimes while they are calculating your check, they write one thing, and the next day it says something else. If you call them, you also may get wildly different answers at this point.

Even the letters they mail you are not always accurate at this point. Sometimes they write you are getting only SSI and not SSDI, when you know that is not true. Sometimes they write you are going to get huge bundles of backpay from both SSI and SSDI. Sadly, that is usually not true either.


You can receive your money by direct deposit into your bank account or on a Direct Express card.

If you are on SSI, it is very important to keep your money separate from everyone else’s. Never share a bank account with another person.

If you have any kind of debt, please take a look at How To Protect Your Social Security Check and also Who Can Take My Social Security Check?

If you chose a Direct Express card, this will work just like a credit card, and the money will be loaded on it each month.


Before your first check, Social Security may make a small deposit of less than $1 in your account and then take it back. This is just a bank test.

You can expect your backpay and first monthly check to start 30-90 days after the award letter. It is usually quicker for initial applications and reconsiderations, and slower for appeals.

If it takes longer than 90 days you can Contact Your Congressperson for help.

If you are homeless or becoming homeless or in a financial emergency, don’t wait. Contact Your Congressperson right away. They may be able to get your check released much more quickly.

Some people get their backpay first and some people get their monthly check first. Go figure.


If you are on SSDI, make sure to sign your kids up to receive benefits. Even if your kids do not live with you, they are still eligible. The parent of your children may be eligible as well. Contact your local office.

If you have an adult child who is disabled, and first became disabled before the age of 22, they may now be eligible to receive pay off of your work record. This is called “Adult Child Benefits” In some cases, it is a higher check or better health insurance for the child.

If you have little or no income, sometimes they give you an “immediate SSI” payment. This is a nice thing they do to get some money released quickly to you. They don’t always tell you they are doing this nice thing, causing you to panic when you get a check for an amount you did not expect and then all the numbers get weird and you cannot get any good information on what is going on. Don’t worry, it will get sorted out in time.


Some people get so excited when they get their backpay they want to rush out and buy everything they have been missing. I’ve seen this lead to regrets. I hope you will take some time to think about what your life may be like in ten or twenty years. If you are permanently disabled, this backpay may be the last time in your life you have money in the bank. I hope you spend it wisely and I hope you spend it well. Living on disability is hard. Being poor and disabled is hard. Someday you will be glad you made good choices today.

If you have debt, there are a few very important things to know about Credit Cards, Medical Bills, Student Loans & Disability Checks If you have debt, creditors can freeze your bank account and then you won’t be able to get any of your backpay money! Luckily, the laws allow you to protect your Social Security money. See link above.

If you receive a large backpay check, there are ways to lower your taxes on this money. There are special deductions you can claim, and ways to declare the income over several years. The rules are complex. You can research this online or consult a tax advisor. If Social Security is your only source of income, you most likely will not need to file or pay taxes. If you are on SSI you almost certainly will not need to file taxes.

If you are on SSDI, you may get hit with a five month waiting period before your check starts. The clock starts ticking on your Established Onset Date, so for many people it has no effect.

For SSI, your backpay will likely come in three payments, spaced six months apart. If you have an urgent need to get more money sooner, you can request this. Contact your caseworker and bring them information on what you need to purchase. For example, if you need to buy medical equipment, you could show them a note from your doctor and/or a print a copy of a page that shows the price of the equipment.

Your backpay will NOT affect your food stamps and medicaid. It is not counted as an asset for 9 months for most programs. However, your caseworker may not know this or may do it wrong. If you have a problem, research or ask for the guidelines on “retroactive” or “lump sum” social security payments. After nine months, it will start to count.


SSI only: When you are on SSI you can never have more than $2,000 in the bank, plus one house and one car ($3,000 for a married couple). You need to be under that amount at the end of every month.

But wait! There is an exception. When you get your backpay check, Social Security will not count that money for nine months. Since you will receive three checks, each six months apart, this will give you some extra time to spend the money. Make sure you spend it and get down below the limit in time… or they may want some money back!

How to spend your money? You can spend it any way you want, just be sure you do not give it away. Also be sure that you and your spouse do not own more than one house or one car. Some people use backpay to put down a deposit on a house or pay off a mortgage. If you first became disabled before the age of 26, you can put your backpay in an ABLE account. If you put the money in an ABLE account you can save it and do not have to spend it now.

SSDI Only: There are no time limits or restrictions from Social Security. Spend or save as much money as you wish in any way you wish. However, saving your backpay can cause problems for other programs and services. For example, it can cause you to lose your food stamps, lose utility assistance, and it can keep you from getting in a Medicare Savings Program or from continuing Medicaid while you are waiting for Medicare.

Both SSI and SSDI: If you have debt, your backpay may only be protected for two months. Learn more here

Food Stamps, Medicaid and Backpay: Most states have policies that your backpay will not count as a resource for nine months. Be sure to tell them that this money is retroactive Social Security money. If they count this money, you can look into the rules in your state, and appeal the decision or request that it be corrected.


In most cases, your monthly check will be at least $735 per month (slightly higher in some states, $890 in California). If it is lower than that amount, it may help you to figure out Why is My Check is So Low? and if there is anything you can do about it.

If your backpay check is too low, it may be for one of the following reasons: Lawyers fees, money owed to IRS, money owed to child support, or you were receiving cash assistance from the state while you applied.


Sometimes they incorrectly take out too much money from your backpay. For example, sometimes they pay the lawyer twice, or take out child support you no longer owe. If this happens, you can request reconsideration on the decision, make an appointment to speak to a supervisor and/or ask for help from your congressperson.


People on SSI get Medicaid. People on SSDI get Medicare. People on both get both.

If you get SSI, you will be automatically eligible for Medicaid, starting right now. In most states this happens automatically, but in some states you will need to enroll.

If you get SSDI, you will have a waiting period of 24 months after the first day you qualify for Medicare. In some cases, the waiting period has already completed by the time you get your first check. In some cases, you can get on Medicaid while waiting. Many people think they cannot get Medicaid when actually they can.

For Medicare, please see: How to Escape Medicare Fees


I have noticed an interesting pattern: A lot of people find they are happy when they get approved. But they are also upset. Sometimes they feel worse.

I don’t know why this is, but I think part of it is that some people struggled for so long and lived in so much fear while they were applying, it’s hard to shift out of that. It’s hard to believe that they don’t have to be afraid all the time any more. Some people say that they feel “post traumatic.”

If you are used to living in a state of high stress and instability, it may take a little while to really accept that things are before now. Some people also find that they grieve after getting approved. It takes time to accept your new life. Be good to yourself. Once you start getting a regular disability check and have more stability, in time you will start to feel much better.

You can use your experiences to help and support others with disabilities, and you can give hope to others who are still applying. You can also join disability rights groups, connect with friends and peers who are also disabled, understand the world in a different way, and work to create change in the system.

Your life probably turned out differently than you expected, but you may find that it also turned out to be more interesting and meaningful than you imagined.

You’re On!

Guess what, there are a bunch more things no one will ever tell you:

56 Things You Might Not Know and Might Want to Know If You Are On Social Security Disability


22 thoughts on “Everything No One Ever Tells You After You Get Approved”

      1. I have been looking everywhere for information that specifically states you can deposit SSI back pay into an ABLE account. Is there a link for this information available?


        1. Hank, as far as I know, you can deposit anything you want into an ABLE account. There is a limit of $14,000 per year (from all sources).

          In my understanding, once it is in the ABLE account it will not effect your SSI.


  1. SS never – in the many years I kept asking them – was able to tell me or adjust for the possibility I might earn some income as a writer. They are only able to handle jobs which have assigned hours per week, and a specific amount of money coming in from an employer PER HOUR.

    They have a horrible example somewhere of a painter: if you used to be able to paint 4 paintings a month, and now can only paint 2… Who can value an artist’s work by the bucketload? SS!

    This means that artists have a horrible time trying to follow the stupid rules for how much you can earn. If I had managed to publish before retirement (I didn’t make it), Amazon (for example) would put into my bank account however much money I earned that month on royalties (say 70% of money from sales), and I would have absolutely no control over how much that was, or when books sold, or how much I earned.

    I guess it never occurred to them that people might earn money erratically from their art. This means disabled artists are effectively silenced from even trying, because they might accidentally earn too much money in a given month – and not enough to eat in others.

    I gave up. You younger people who are writers, musicians, painters, entertainers will have to tackle what happens when you can work a few hours even when you’re on disability.

    Liked by 1 person

      1. You’re welcome – I think it’s a disgrace. Art (including writing, which I do) is one of the things that DOES lend itself to doing when you feel up to it – and can be sold if you’re lucky – and they can’t cope with it at SS.


  2. Lily, thank you! All your information is excellent. This is especially. I was approved in under a month. I rolled over into retired two years ago, but would have loved to have known what I was approved for. Thank you for creating this highly useful compendium! You are a blessing ❤️


  3. I have been diabetic for 25 years and I was recently diagnosed with a mitochondrial mutation. I have a hard time getting around and I run out of energy quickly. I was going to apply for disability but was told that I am not eligible. I have not worked outside of the home since December of 2011. I was also told that my husband makes too much. We have 2 kids, one of whom also has a mitochondrial disease. Do you have any added insight?


    1. Hi Bethany,

      Unfortunately stay-at-home parents have a difficult time with Social Security.

      I am sorry to hear you are in this position. There are two things that you might wish to look into:

      1 – If you last worked in 2011 you may be fairly close to having enough work credits now. It may be worth looking into how close you are and seeing if anything is possible.

      2 – The other option would be to see when your credits expired and see if you can prove you became disabled before that date. It is possible they expired somewhat recently – within the last year.

      Hope this helps.

      more info here:


      1. Thank you. I may also look into a waiver. With insulin prices going up and I am anticipating more meds with the mitochondrial disease, anything that will help is appreciated.


  4. Hi, I recently applied fot SSI. They said they wanted to/had to open my SDI case to see if I could get earnings from a parent, since I seem to have gotten ill before age 22. They claimed it wouldn’t affect my current determination, then said, well not unless your doctors think you’re getting better. I suspect my doctors haven’t made such a claim (except that I’m slightly better than when I had an extra infection but I’ve been trying hard to tell them how bad it still is) but I haven’t looked at my records particularly.

    How worried should I be?


      1. Yes, I currently have SDI (but the amount is very low), Recently became eligible for SSI and when I applied for that, they decided to redetermine date of SDI eligibility in case they could calculate SDI based on a parent’s income rather than mine.


  5. Also my work credits are probably now expired in case anything goes wrong and I would have to reapply and supposing there isn’t medical documentation of me being sick enough prior to age 22.

    Liked by 1 person

    1. Hi Jan,

      Ok, I think I understand better now 🙂

      So, my understanding is that by putting in an SSI application, you have automatically started a process where they will do a determination of your disability right now. So, that is happening no matter what (unless you decide to withdraw your application).

      As far as I know, the decision to re-determine your onset date is something extra someone decided to do to be nice to you. I see your point about work credits, though. Honestly, I am not quite sure if this reopens your original decision or not. If you feel like they are re-opening your original decision, and you do not want them to, I suppose you could request that they do not consider an earlier onset date, but simply process SSI with your current onset date.

      How long ago were you approved? And do you know what is the age that is now considered your onset date (date you became disabled)? Is it pretty close to 21?

      If you want to know what your records say, the only way to do that is to collect and read them. If you feel nervous about it, you could also ask your doctor for a letter indicating that your condition has not improved and then submit that. Some info on how to get a good letter from your doc, plus sample letters.


    2. Having thought about it a little more, I just updated my other reply 🙂

      In some cases, getting an onset date before age 22 can mean a lot of extra money, but in some cases, it won’t have an effect. It depends if you have a parent who was a high earner or who worked for a lot of years or who will work for a lot of years before they retire.


  6. Thanks for the helpful reply. I don’t have a very good sense of time, but I feel like it has been 4 or 5 years since I was approved. They claimed that any determination wouldn’t mess up my Medicaid, which I am concerned about because I recently have been working very hard making phone calls and having meetings with various people, in order to get a home care aide, which I need. I would have to get quite a lot of SDI to cover home care and asthma medication, if anything goes wrong with Medicaid or Extra Help.

    I see something went wrong with my OS update and autofill and my email and name were in the wrong box. I couldn’t even tell whether my posts were going through. Are you able to hide my email address?

    Thanks. 🙂


    1. Hi Jan,

      I have never seen anyone’s email here. If it is being entered in, I don’t know where it goes.

      If you get on SSI there is no way that can mess up your Medicaid.

      If you are determined to become ill before the age of 22, then… nothing happens now, but when one of your parents dies, retires, or becomes disabled, your check might go up.

      In most cases, this won’t affect medicaid, but in some cases it can. You would need to know how high your check will be and what the income limits are for the Medicaid program you are applying for. Even if this happens, there are usually solutions.

      It is unlikely that Social Security will find and collect your medical records from more than five years ago.

      If you want to prove that you were disabled before the age of 22, you may want to find some records yourself, and collect and submit them.

      Or you could request a copy of your case file from when you originally applied. If that still exists, you can see if there are any old records in there.

      I very much hope your home aide works out well and you can get the help you need.


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