Here’s a list of everything that nobody tells you when you get approved for Social Security disability.
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.
The top of this list is for people who were just approved. The bottom is for everyone who is on disability.
Please share this list with anyone else you know who is on benefits. It can save you 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.
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.
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.
The SSI interview may also be called a “PERC” interview or a “non-medical” determination.
Some people want to waive their SSI interview because they feel sure they won’t qualify for SSI and they don’t want to bother. This is often a bad idea.
Hint: If you were poor while you were applying, always go to your SSI interview. In many cases, it will have no affect on your future checks…. However, for mysterious and complex reasons that I can’t get into, it sometimes means a few thousand dollars in extra backpay.
If you do not want to go into the office, you can request to have the SSI interview over the phone.
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.
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.
Getting a Representative Payee
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.
You will receive a letter telling you your monthly check amount and backpay amount. This information may also appear online.
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 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.
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 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.
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.
Some people get their backpay first and some people get their monthly check first. Go figure.
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. I am not a financial expert, so please double check. This is what I have thus far been able to figure out 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.
When To Spend Backpay
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: In some states, your backpay may affect your other benefits, but some states have policies protecting against this. Be sure to tell them that this money is Social Security money and look into the rules in your state.
If Your Check Seems Too Low
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.
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 states, you can get on Medicaid while waiting.
Adjusting to Your New Life
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.
Everything Else You Need to Know
- 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.
- If your condition is severe and a friend, loved one or family member is providing personal care for you, you may be able to get pay for the person who is caring for you.
- If you have debt, you may have some options. Learn more about Credit Cards, Medical Bills, Debt Collectors & Disability Checks
- There are special rules for food stamps for people with disabilities. You may be able to get more food stamps, or qualify for food stamps even if you were turned down in the past. How to Get Enough Food Stamps to Actually Eat
- As you probably have already figured out: Social Security sometimes gives out wrong information. If you call Social Security and they tell you something that does not sound right, that may be because it is not right. Double check.
- If you have a question you cannot get a good answer to, post here, or check out: How to Escape the Information Black Hole
- Don’t learn this the hard way like I did. Here’s How To Get a Free Phone That Doesn’t Suck
- 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
- If you have student loans, please read this immediately: How To Escape The Crushing Weight of Student Loans
- 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
- If you have transportation problems, check out How To Get a Free Ride
- 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.
- If you are on SSI, please please please learn what can make your the SSI check go up and down. It will save you a world of heartache down the road.
- If you are poor or low-income, there are about a million more things I would like you to know. Please look here: How to Be Poor in America
- 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 short form is also called Disability Update Report. If you receive this form, look here: How to Ace the Short Form CDR
- 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 looking for cheaper rent or better housing options, check out: How to Find Cheap Rent
- 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.
- When you are disabled or homebound, the people in your house matter a LOT. Sometimes those are the only people you see! Here’s How to Find Wonderful Housemates & Caregivers
- If you are looking to make a big and interesting change in your life, learn more about How to Join an Intentional Community
- 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.
- Don’t stop now! It’s incredibly important to keep having Great Doctor Visits That Create Great Records. This will help you when your disability comes up for review.
- 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?
- If you are on SSDI, hopefully you have already done this, but just in case…. You can collect extra benefits for your kids (including kids who don’t live with you) and sometimes for the parents of your kids. Important: This will not happen automatically. You must sign them up. I have seen people throw away $10,000+ by not knowing they could do this.