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 twelve 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.
🌷 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.
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. If you were approved during initial application, it may not tell you. You can call Social Security and ask the person who answers if they can look in the computer and read this information to you (they may not know how to find it right away, but it is there).
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.
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.
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.
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,
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 in a financial crisis, during your interview you can request an “immediate SSI”. If you can show some kind of proof, such as an eviction or foreclosure or utility shut off notice, this may help. In addition to making this request to the person doing your SSI interview, it can also be a great help if you Contact Your Congressperson with this same request. Someone at your Congressperson’s office can help get your first check released more quickly if you are in an emergency situation.
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
SKIPPING YOUR SSI INTERVIEW
If you are not poor, there is no need to go to an SSI interview. You can request a form to waive it, or you can just go to it. Theoretically, skipping the interview speeds things up. But sometimes they lose the waiver form so it really just slows things down.
If you are poor, it is usually a good idea to go to the interview and be considered for SSI, even if your SSDI check is high. There is a little loophole where sometimes you can get more backpay this way. Up to $3,600 extra!
You will not qualify for this loophole if: your decision was fully favorable plus your established onset date was more than five months before your application date. If you don’t know what this means, just go to the interview.
If you are wondering if you are poor enough for SSI, take a look here: How Poor Do I Have to Be to Get SSI?
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, someone at Social Security 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
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 SGA, they may look into this more, particularly if you did not notify Social Security about the work. 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 back pay amount. This information may also appear online.
Some people get their first payment before they get their award letter.
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.
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 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 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.
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.
More things that can raise or lower your SSDI Check: Good News and Bad News About Your SSDI Check
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.
Most people receive backpay for the months while they were applying. The amount of backpay you receive will depend on your Established Onset Date. See section on onset date above.
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
- Child support you owe
- In some cases, government student loan debt
- In some cases, money owed to other government agencies
In addition if you received any of these things while you were applying, there is a chance the amount will be deducted from your backpay:
- Workers comp
- Cash assistance (state, city, county)
- Certain forms of rental assistance (Most common in New York)
- State temporary disability (CA, NY, RI, HI, NJ)
No one else is allowed to garnish money out of your backpay check without your permission. There are special regulations that protect Social Security checks, however you need to take certain steps to get this protection: Learn more about Debt & Disability
Lawyers fees are taken out of your backpay automatically. Other kinds of deductions are more complicated and may slow down your backpay check. Sometimes it gets slowed down a lot or the process gets stuck. If this happens, you can contact your Congressperson’s office. They can help you get things moving again.
Your lawyer’s fees will be explained in the contract you signed with your lawyer. According to Social Security regulations, they are typically up to $6,000 or 25% of your backpay. If your case had multiple appeals (denied at a hearing and continued appealing), these rules no longer apply, and fees will likely be higher.
If your lawyer made significant mistakes on your case, or you are unhappy with your attorney’s performance you can contact the judge’s office (this office may be called ODAR). Someone there can advise you on how to contest lawyer’s fees if you wish to try.
In addition to lawyers fees, many lawyers will send you a bill for the costs they spent collecting your medical records – a few hundred dollars is common. These fees are not removed by Social Security. They are a bill from your lawyer.
BACKPAY AND LTD
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 haven’t paid back your LTD company yet, be careful about spending your backpay. Some people get into a muddle this way.
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 or all 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. 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. 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. Learn more below.
BACKPAY AND DEBT
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 check without your permission.
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! There are some specific laws the protect Social Security checks and backpay and keep bank accounts from getting frozen. Please see link above.
Of course, if you own a house or other assets or have other income, debt collectors can continue to garnish or freeze or take you to court for those things. Only your Social Security check is protected, not all money you have.
BACKPAY AND TAXES
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. Some more information is here Tax Breaks for Disabilities
SSI is never taxed.
SSDI is sometimes taxed, but only if your total income is above a certain amount. You do not want to go over that amount! Important, Social Security doesn’t count all your income, they only count something called “provisional income.” This includes 50% of your Social Security check, plus your other income.
BACKPAY AND SSDI
You don’t need to read this section, as it is long and complicated and there is nothing you can do to change it, but if you are curious how they decide your backpay, here it is:
Your backpay can start up to 12 months before the date you first applied. Except in rare circumstances, it will not be more than 12 months before your application date. A lot of people are told wrong information about this.
There is a five month waiting period before the date your backpay check starts. The clock starts ticking on your Established Onset Date. See section above on onset dates.
If your Established Onset Date was a way long time ago, this will have no impact on you, because those five months will have expired long before you became eligible for payment anyway.
If your Established Onset Date was recently, you may lose those five months of pay. Or you may be able to collect five months of backpay from SSI during that time.
BACKPAY AND SSI
Your backpay can go all the way back to when you first applied, or (sometimes) when you first called and requested an appointment to apply. Sometimes it will not go back that far. It depends on your Established Onset Date. See section above on onset dates if you want to know more.
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.
RARE CIRCUMSTANCES THAT CREATE HIGHER BACKPAY
If you applied for disability in the past and then got turned down and then started a new application and then Social Security decided to reopen your old case then… you will get a lot more backpay. Your backpay will be set based on your previous application.
BACKPAY AND FOOD STAMPS AND MEDICAID
You will need to check the specific rules in your state. Look up or ask for the rules on “retroactive lump sum Social Security payments.”
In many states, your back pay will not affect your food stamps and Medicaid for a length of time – usually nine months. Medicaid in your state may be called medi-cal or MassHealth or something else.
After the time period is over, if you have too much money in your bank account, this money will count as an asset and then you may lose SSI, medicaid or food stamps.
If you were first disabled before the age of 26, you may just want to dump all or most of your backpay into an ABLE account. Then you don’t have to worry about when to spend it.
HOW TO SPEND BACKPAY
If you are a representative payee for a child, there are specific rules about how SSI money can be spent. Please look at the SSA website for more information.
If you are an adult, you are allowed to spend your backpay any way you want. The money is yours.
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.
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. This page has information on how you can save money and how you can spend money: How Will Savings Affect My SSI Check?
If you were first disabled before the age of 26, you may just want to dump all or most of your backpay into an ABLE account. Then you don’t have to worry about when to spend it.
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 above.
Debt: If you have debt, your back pay may only be protected for two months. There are special regulations that will allow you to protect your backpay beyond this. Learn more here
IF YOUR CHECK SEEMS TOO LOW
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.
People on SSI get Medicaid. People on SSDI get Medicare. People on both get both. Sometimes people on SSDI get put on Medicare and then find a way to qualify for Medicaid, so they also wind up with both.
If you are in California, your Medicaid will be called Medi-cal.
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 to qualify for Medicare. The 24 months start the day you first qualify for SSDI. So, if your backpay starts two years ago, your Medicare starts right now! If your backpay starts one year ago, your Medicare starts in one year from now.
In some cases, you can get on Medicaid while waiting. If you were not eligible for Medicaid in the past, please check again: Many people think they cannot get Medicaid when actually they can.
For Medicare, please see: How to Escape Medicare Fees
Tip from Rose: “When they start your Medicare, they will give you the option to start it now, or to pay the back premiums and backdate the start to when you were first eligible. Unless you have outstanding medical bills, there is no advantage to paying all the extra premiums.”
IF YOU ARE CURRENTLY ON HEALTHCARE MARKETPLACE INSURANCE
If you are on insurance from the Healthcare Marketplace, in most cases, all subsidies will end when your Medicare starts. Make sure to cancel your Healthcare Marketplace insurance before this happens. If you don’t, you may have to pay back thousands of dollars!
IF YOU ARE CURRENTLY ON MEDICAID OR MEDI-CAL
If you go on SSI, you will have no issues. You will continue to get Medicaid or Medi-cal. Skip this section.
If you go on SSDI, we have bad news for you. In most cases, your Medicaid gets automatically cut when your Medicare begins (sometimes sooner). Even if you are still poor, it is still automatically cut. We know it sounds crazy that they take away insurance from disabled people, but there you have it.
Luckily, there is some good news:
- You will get Medicare.
- There are many programs that can help with Programs that can help with Medicare Co-pays and Premiums
- Many people are able to get their Medicaid back by applying for a different form of Medicaid. Different Medicaid and Medi-cal Programs.
The Medicaid office will not tell you every kind of Medicaid program that you might be eligible for. You do not have to accept what they tell you! You can research the different Medicaid programs in your state yourself, find one you think you qualify for, and then try applying for it.
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.
Guess what, there are a bunch more things no one will ever tell you: