Everything No One Ever Tells You After You Get Approved for Disability

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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.

ARE YOU IN THE RIGHT PLACE?

This page has started to get noticed by search engines! That means a bunch of people wind up here when they would rather be somewhere else. Would you rather be here?

Please read me if you got approved more than six months ago and you want to know some really important things you really need to know.

Please read me if you are applying or appealing and you want to learn many, many things you can do to improve your chances.

Please read me if you are waiting for a decision and you want to see a typical timeline of everything that will happen, when it will happen, and what to expect.

Please read me if you have an upcoming SSI Interview. This may also be called PERC. It is usually done over the phone, but sometimes in person.

Please read me if you have any kind of Social Security Disability Interview. Or if Social Security has asked you to call them or meet with them.

If you got approved recently, and you want to know what happens next and what to expect, you are in the right place! Read on.

APPROVAL LETTER

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. For example: if you had a disabling car accident on June 2, 2015, and they write onset date June 2, 2016, that would pretty clearly be a clerical error.

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.

FOLLOW UP INTERVIEW

Social Security may contact you for an interview to collect some follow up information. This interview will not include any questions about your health or medical history.

Good news: You have already been approved and they won’t be questioning your disability now! The interview may include:

– SSI Financial Questions (see below for details)
– Representative payee questions (see below for details)
– Signing up your kids for benefits (see below for details)
– Getting Your Bank Information (to deposit your check)

These interviews can be done by phone or in person. If they scheduled you in person, but you are unable to be there, you can request a disability accommodation for a phone interview.

PAUSE NOW AND LEARN ABOUT SSI AND SSDI

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

SSI INTERVIEW

After your award letter, you may be contacted to set up an SSI Interview. This might also be called PERC (Pre-Effectuation Review Conference).

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 back pay.

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

REPRESENTATIVE PAYEES

If Social Security thinks that you are not able to handle your own money, they may consider assigning a representative payee (someone who will handle your money for you).

This may happen if you have: Serious mental illness, Developmental disabilities, Drug or alcohol abuse, Alzheimers, Traumatic Brian Injury, or other disabling cognitive impairments

If this is your situation, they may ask you questions to decide if they think you need a representative payee. This is rather important, as it may affect how your money is handled for the rest of your life! Learn more about Representative Payee Questions

WORK REPORT

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

AWARD LETTER

After your SSI interview, you will receive a letter telling you your monthly check amount and back pay 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 $755 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.

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 back pay from both SSI and SSDI. Sadly, that is usually not true either.

PAYMENT OPTIONS

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, except a live-in spouse.

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.

FIRST CHECK

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 back pay 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 back pay first and some people get their monthly check first. Go figure.

SSDI ONLY

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.

BACK PAY

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

There is a possibility some things will be deducted from your back pay before you receive it. The things that can be deducted are: your lawyer’s fees, taxes you owe, and child support you owe, and in some cases, money owed to other government agencies. If you received cash assistance from the state while you were applying, this may also be deducted. This deduction process may slow down your first check.

If you received Long Term Disability (through your employer), the insurance company will likely want most or all of your back pay sent to them. If you used a lawyer assigned to you by the LTD company, your lawyer may have asked you to sign an agreement to let to let the LTD company take money right out of your bank account. In this case, if you keep money in that bank account, you will probably notice that one day most of it is gone. If you used your own lawyer, or you haven’t signed an agreement to let them do this, the LTD company will send you a bill and you will decide how you want to handle it.

Some people pay their LTD company using a credit card with a cash back reward. It’s a really large amount of money, so the cash back can be a decent amount. Most people just pay the LTD company immediately, but some people do it more slowly if they are managing other bills. They cannot force you to pay them quickly. We’ve heard rumors that some people never pay the LTD company (we assume these are people that are no longer receiving LTD and were treated poorly by the insurance company). LTD is private debt, so they cannot garnish or take your Social Security money – they have to wait for you to decide to give it to them. Learn more about Private Debt & Disability Checks. 

If you have debt, there are a few very important things to know about Credit Cards, Medical Bills, Student Loans & Disability Checks. Private debt collectors cannot garnish or take your back pay or Social Security money. On the other hand, private debt collectors can try to freeze your bank account and then you will have to go to court to get it unfrozen! Luckily, the laws allow you to protect your Social Security money. See link above.

If you receive a large back pay 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 back pay 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 back pay will NOT affect your food stamps and Medicaid. It is not counted as an asset when you receive it. In most states it does not count as an asset for nine months – please check the rules in your state. However, your Food Stamps 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, then show your caseworker the guidelines. After the nine months, it will count as an asset and then you may lose SSI, medicaid or food stamps.

WHEN TO SPEND BACK PAY

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 back pay 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!

But wait again! If you want to save your money for more than nine months, there are a few programs that might make it possible. See the link below.

How to spend your money? You can spend it any way you want, just be sure you do not give it away, and be sure you do not own too many assets (cars, houses, stocks, bonds, etc). This page has information on how you can save money and how you can spend money: How Will Savings Affect My SSI Check?

Saving your back pay can cause problems if you have debt or if you are also on food stamps, medicaid or other programs. See below.

SSDI Only: There are no time limits or restrictions from Social Security. You can spend or save as much money as you wish in any way you wish. However, saving your back pay can cause problems if you have debt or if you are also on food stamps, medicaid or other programs. See below.

Food Stamps, Medicaid and Back pay: Most states have policies that your back pay will not count as a resource for certain length of time (often six 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.

The person processing your application at Medicaid or Food Stamps may not know these rules. If you have a problem, ask for a copy of the rules about retroactive social security and/or bring a copy of the rules and show it to the caseworker. Sometimes you can find these rules by googling the word “Food stamps” or “medicaid” plus your state plus “lump sum” and “retroactive” and “social security payments”.

Debt: If you have debt, your back pay may only be protected for two months. Learn more here

IF YOUR CHECK SEEMS TOO LOW

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 back pay 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.

IF YOUR BACK PAY SEEMS TOO LOW

Sometimes they incorrectly take out too much money from your back pay. 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.

HEALTH INSURANCE

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

If you get SSI, you will be eligible for Medicaid starting right now. In most states this happens automatically, but in some states you will need to enroll. If it does not happen automatically for you, contact your local Medicaid office and let them know you would like 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

ADJUSTING TO YOUR NEW LIFE

A lot of people find they are happy when they get approved. But they are also upset. Sometimes they feel worse.

We don’t know why this is, but 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

 

26 thoughts on “Everything No One Ever Tells You After You Get Approved for Disability”

      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?

        Like

        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.

          Like

  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.

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  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 ❤️

    Like

  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?

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    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:
      https://howtogeton.wordpress.com/2017/03/03/how-to-be-ineligible/

      Like

      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.

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  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?

    Like

      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.

        Like

  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.
      https://howtogeton.wordpress.com/2017/02/03/how-to-get-a-great-letter-from-your-doc/

      Like

    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.

      Like

    3. Hi, this is the one and the previous one, where I put my email in the wrong field :$ or it was there pre-filled in and I didn’t notice the other field said email. Sorry for making extra work. Your blog is awesome. 🙂

      Like

  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. 🙂

    Like

    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.

      Like

      1. Hi, thanks so much. SSA asked me where to find the old records so they could figure out the earlier date. Maybe you’re right that they are just being nice. It looks like I could potentially be eligible for half my parent’s retirement income, which is not enough to disqualify me from anything, but more than my own SDI.

        They seemed worried SSI/Medicaid might go away but that seemed more a programmatic concern having to do with national politics, not something related to me personally.

        Thanks for the well wishes for my aide. I have a few of my hours set up. My state is really nice and listened carefully, but there is an overall lack of home care aides so it’s hard for them to staff everyone.

        Thanks for the good advice. I hope things are working out for you also.

        Like

  7. Please help !
    After going to Federal District Court twice, fighting for SSDI with an expired DLI, and having to prove Disability before DLI, I was only approved for SSI. ( I applied for both almost 7 years ago ). I believe I had more than enough evidence to prove my disability started before my DLI. I feel completely CRUSHED. My SSDI payment would have been double the SSI payment, not to mention I would have received more back pay and Medicare.
    My question is… Can I still appeal for SSDI, yet still accept and collect the SSI ? I am extremely desperate and without any type of income what so ever. I just DO NOT want to let the chance of obtaining the SSDI go down the tube, but I am desperate for any type of financial help NOW.
    Please let me know what I can do, to continue to fight for the SSDI. My fight has been horrific ( for my son too ), and it has lasted almost 7 full years. I feel like dying at this point !!!
    Respectfully,

    Like

    1. Hi anona,

      I do not know all the policies in this area. As far as I know:

      – Yes. You have the right to appeal your onset date. More is explained here: https://www.disabilitysecrets.com/resources/disability/challenging-social-securitys-established-onset

      – This will cause them to review your entire decision. So it is a risk.

      – It is unlikely you will find a lawyer to assist with this, unless you want to pay upfront.

      – I have only met one person who has done this. His SSI continued during the appeal. However, I have not seen the regs to know if this is always true.

      – There is probably a deadline to file an appeal. I don’t know the deadline but 60 days is a common deadline for ssa.

      Hope this helps. Some info on how to survive financially on SSI: https://howtogeton.wordpress.com/2017/08/21/how-to-survive-on-ssi/

      Like

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