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

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.


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.

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.


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.


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.


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


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 $1,170 per month, 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 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 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.

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.


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.


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.


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.


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. It will never be more than 12 months. A lot of people are told wrong information about this.

There is one exception: 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…  it will be 12 months before your previous application date.

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.


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.


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.


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.


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


In most cases, your monthly check will be at least Maximum SSI. 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.


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 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. 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


If you go on SSI, no problem. You will continue to get Medicaid or Medi-cal.

If you go on SSDI, we have bad news for you. In most cases, your Medicaid gets automatically cut. Even if you are still poor and you meet the financial criteria, it is still automatically cut. We know it sounds crazy that they take away insurance from disabled people, but there you have it.

The good news is that you will get Medicare. The other good news is that there are many programs that can help with Medicare fees (see above). Finally, do not give up on Medicaid! Many people are able to get it back.

They usually will not tell you every kind of Medicaid program that you might be eligible for. Or they will put you in a Share of Cost Medicaid program that is super expensive. Or they will put you in a Medicare Savings Program, that will not cover dental, vision or transportation.

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. Different Medicaid and Medi-cal Programs.

For SSDI, you will qualify for Medicare, but it can be expensive. They will take $130 out of your disability check each month, plus you pay 20% of all co-pays. Luckily, there are some options. Please see links above to see how to continue to qualify for Medicaid, plus how to escape Medicare fees.


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


210 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?


        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.


          1. I’d love to hear any ideas about royalties. I’ve been very slowly working on a book, but I can’t get a straight answer about how royalties would affect my SSDI and SSI. I’m not sure there actually is a straight answer (seems like a lot is up to the case worker), but any insights would be very helpful!

            Liked by 1 person

            1. Hi Katrina,

              I haven’t seen any regs on this, so please double check what I am writing here…

              I am guessing this would be considered “self-employment” on your taxes.

              When you do your taxes you write off any business expenses (you would need to look up an article on taxes, most self-employed people write off a lot of things). SSA counts the income AFTER your expenses.

              Most first time authors don’t show any profit after business expenses, in which case your income would be $0. If you do have profit of more then $65 per month, then your SSI would start to go down, but SSDI would not be reduced.

              More info is here. Hope this helps:


  2. 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.


    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. 🙂


  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.


      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.


  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 !!!


    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/


  8. I just found your page today and am so happy! I wish I had found it two years ago. May I please ask you for advice? I was approved on 11/8/17. My hearing was on 9/11/17. My onset date was in August, 2015.

    I received LTD payments for 24 months and they ended prior to my hearing. I know that I owe them my backpay even though they are not aware that I had a hearing or that I was approved. I do remember them telling me months ago that they wanted everything they paid me reimbursed but the backpay check I just received is short by $32,000. What do I do? I cannot afford to pay payments and do not have the funds to pay them. I am facing and divorce and will be without a home shortly.


      1. My backpay check? My. monthly Ltd payments were much higher than what my monthlu SSDI checks will be. People had me believing that my SSDI will be garnished, they would take from my 401k, etc


        1. The LTD company has zero ability to garnish your SSDI check. That is illegal.

          Whoever told you that was confused. LTD will not request more money than the backpay you actually received.


    1. If your disability pension overlapped with the LTD, they may request back any months in which it overlapped. Or they may not. You would need to read your LTD policy to see how it is set up.

      This is only for months where your received both pension and LTD during the same month.


  9. i am on ssdi i was on SSI they switched me to aduld child SSDI and gave me backpay from 2015 of 11,819 apparently so far i keep my medi-cal because mediciare was saying the state is paying the co-pays but how is the SSDI backpay going to affect my medi-cal? i am in california if you know rules for here


    1. Hi leonard,

      congrats on all the backpay. I’m sorry I don’t know the answer to this – partly because there are different medi-cal programs with different rules.

      Some forms won’t care how many assets you have. And some will care, but they won’t count backpay for a certain number of months.

      I think it might help to try to find out the name of the medi-cal program you are in, or the type of medi-cal you are getting so you can look up the rules for that program.


  10. and after so many months how do they determine you have spent it? just its gone from your bank balance? i mean SSDI the rules for it say they dont care what you do with it pretty much


    1. Yes. They look at your bank account. Plus any other assets you have (stocks, bonds, valuables, etc).

      Rules vary by program but most programs will not count one car, and one house, and ordinary household items.

      The only thing you really can’t do is give money away.


  11. i just know i got letter saying i was in extra help my a&b&d all have zero co-pay and 1.25 for generic RX and like 3.70 for name brand RX


  12. i have no car i rent a room, i have no assets to speak of realy and some of the cash is going to pay back some friends who loaned me money and the rest will be for i needed new tv my old bit the dust


    1. This all sounds good to me. If you are paying back a significant amount to friends, it might be good to have a signed loan agreement, so you can show that you didn’t give money away (just in case you are asked about this, you might not be)


  13. im getting just adult child, my SSI is GONE and i have no signed agreements it was just long time friends who loaned me the money


    1. I don’t know the rules of this, and it may not even be an issue in your case.

      I have just read that for some programs there can be an issue if you give money away, so if you can get something written to show it was paying back a loan, this might make you feel safer.


  14. i filled out app on dec 23rd when i talked to medicaire the 26th they said i had extra help as of the 23rd, all i can figure is they had someone breathlessly watching for my app..lol or huge coincidence i got it same day i applied


  15. i was on ssi from feb 2015 to dec 17 and they said i was eligable for ssdi hence the money that is backpay? and does it mean this….. Retroactive Social Security or Supplemental Security Income (SSI) benefits are also excluded for 6 months after you receive them. does that mean i have 6 months to spend them? and if its under SSDI backpay money rules i read on your site here you can spend your backpay any way you want means they wont pester me about where the money went because under ssdi backpay rules you can spend it how you please


    1. If you are in qmb then what you wrote sounds right to me 🙂 in six months you need to have less than $7,390 to stay in that program.

      I don’t know the specific qmb rules, but most programs do not care how you spend your money as long as you don’t give it away.


  16. as for medi-cal thing lady at medicaire was like we dont know much about medi-cal so she may not know how to read exactly which im in


  17. im just deathly afraid of calling because it could be it does NOT affect me, but the zagnut who talks to me does not understand how it works and im fighting for my medi-cal just because i called, because they think it does affect me and dig into my file


    1. I totally understand.

      One thing that is a little mysterious to me is why your backpay would be so high for just two years. If you are in qmb it would seem like your monthly check would not be that high?

      These are the rules for qmb, does it seem like you meet this?
      “To qualify for QMB, your monthly income cannot exceed $1,005 if you are single ($12,060/year) or $1,354 ($16,240/year) if you are part of a couple.”


  18. 33 months feb 2015 to nov 2017, between SSI like in feb 2015 was 973 and SSDI would have been like 1315 in 2015 going up with cola each year,or so i think it was so it averages to like 330 bucks a month times 33, lady who got me on said it would go back to feb 2015 to dec 2017


    1. I’m really happy for you that someone finally figured this out!

      I guess that’s the part I was confused by. If your SSDi is now $1,315, I’m not understanding how you qualified for qmb? The website says the limit is $1,000 for a single person. Unless you are married?


    1. Ok, I’m not sure why it would say qmb if you are really in qi? Also, I think the qi program doesn’t pay co-pays 😦 just premiums.

      but I have a different idea! I don’t know if this is worth it to you.

      It seems like you are pretty close to qualifying for full medi-cal. ($1,235 per month)

      I have met several people who qualified for medi-cal by lowering their countable income. Usually this is done by purchasing some supplemental insurance on the medicare.

      Again, I don’t know if it is worth it. Full medi-cal pays for things medicare doesn’t: vision, dental, ihss (home aides), plus all co-pays.


      This is just a thought so you feel like you have more options. I’m not immediately seeing how you can stay in qmb with that much income, but maybe I am misunderstanding something.


  19. im single the qi program has 1357 limit i get 1368 or 1348 after 20 disregard and it says on that program as well….. Retroactive Social Security or Supplemental Security Income (SSI) benefits are also excluded for 6 months after you receive them.


  20. supposedly pickle amendment lets you keep your medi-cal if you are on ssi and go to ssdi and the higher benefit makes you go over income limit, im pulling my hair out trying to find pickle article that said that


    1. oh, good point!!

      when I looked at it I thought it only applied to cost-of-living increases, but that would be extremely interesting if it could actually apply to your case! Let me see if I see any more about it.

      When your medi-cal was last assessed, were you already receiving the new higher income? Do you think those were the figures they were using?


  21. thats pickel article says The Employment for Disabled Americans Act of 1986 (Public Law 99-643) requires states to continue Medicaid coverage when an individual who became disabled before age 22 and received SSI becomes eligible for SSDI or has an increase in SSDI benefits. Such disabled adult children continue to be considered SSI recipients for Medicaid purposes. thats me was on ssi went to SSDI


    1. OK, I cannot guarantee what I am about to write is correct.

      I think some of your options are:

      A. Accept QI. This means you pay your own vision, dental and co-pays. Medicare co-pays are 20% of all bills. or…

      B. If your assets are below $2,000 in six months, you may have some other options. One option for saving assets is to open an ABLE account.

      Options if you are below $2,000:

      – pickle???

      – Medi-cal for aged blind disabled??? (only if you lower countable income a bit)

      – Medi-cal for working adults with disabilities (no minimum work requirements – some people do a small amount of tutoring, art making, babysitting, etc)

      – could be other options I don’t know about?


  22. from that link Laws that Protect Your Medi-Cal Coverage

    The Pickle Amendment. This amendment states that if an individual’s monthly income is over the SSI limit simply because they went from receiving the SSI stipend to the higher SSDI stipend, they maintain their eligibility for Medicaid.

    The Employment for Disabled Americans Act of 1986 (Public Law 99-643) requires states to continue Medicaid coverage when an individual who became disabled before age 22 and received SSI becomes eligible for SSDI or has an increase in SSDI benefits. Such disabled adult children continue to be considered SSI recipients for Medicaid purposes….so if im reading it right federal law forces them to keep me even though im over income limit


  23. they do a example there but its above my head if you can figure it out i have been on SSI since 1988 my check was 602 or within few bucks of that back then


  24. but if you read the mediciare qi its limit is 1357 and i am at 1348 after 20 disregard, so if i am getting medi-cal for part d and i lose that oh well my part d premium without help is 32.90


    1. I’m not sure I follow. I am posting kind of weirdly because I don’t know how you are being notified. Were you able to see my post above that is a list of different options?


    1. I’m going to repost this because I got lost in this discussion and I’m not sure if you saw it:


      OK, I cannot guarantee what I am about to write is correct.

      I think some of your options are:

      A. Do nothing. Like you said, you will qualify for QI. This pays your premium. You pay your own vision, dental and co-pays. Or….

      B. Keep looking into other options. If your assets are below $2,000 in six months, you may have some other options. (One way to save assets is to open an ABLE account.)

      Options if you are below $2,000:

      – pickle??? (does not look to me like you qualify, but I’d be thrilled to be wrong about this!)

      – Medi-cal for aged blind disabled??? (you would qualify if you lower countable income a bit – for example, buy some supplemental insurance)

      – Medi-cal for working adults with disabilities (no minimum work requirements – some people do a small amount of tutoring, art making, babysitting, etc)

      – could be other options I don’t know about?


    1. Yes. I am not an expert in this, but my understanding is Qi just pays your premiums, nothing else.

      Medicare pays for doctors and meds, but only 80%. You pay the other 20%. So if you need a surgery or hospital visit that can be a problem 😦

      As far as I know, medicare does not cover vision or dental.


  25. under qi you said You pay your own vision, dental and co-pays. Or…. do you mean i pay co-pays for what? to see regular dr r what? if so how much is that?


    1. I don’t know the rules for extra help, but I think it only applies to prescriptions, not doctors and hospitals.

      You wrote earlier that your paperwork said you were on qmb.

      If you are now in qmb, that will pay all your co-pays. The problem is, I don’t know how long they will continue to keep you in qmb if your income is higher now.


    1. Yes. I think that is how it works.

      Here is a story from someone who was on medicare. She was going to the hospital for a surgery that cost 30k+, so she was going to have to pay $8,000. She was able to get in medicaid for working adults with disabilities and paid $0.

      Medicaid is the same thing as medi-cal it just has a different name in other states.



    1. Yes, it’s also possible that nothing will change right now, but may come up for reassessment at some point in the next year or so. So, it’s just good to keep your options in mind if that happens 🙂

      I realize all this was not your original question. You just wanted to know how much assets you can have and still qualify.

      It looks to me like the answer is:

      – around 7k for qi and qmb
      – 2k for medi-cal for people who are also on medicare

      Like you said, you’ve got six months 🙂


  26. i get feeling people who were disabled before 22 they are forced to cover them by law even though going ssi to ssdi throws them over the limit


  27. when i filled out the extra help app it asked what my monthly SSDI was so if the income was a disqualifier for me i would have talked to medicaire and been told i was denied or if Soc Sec robo enrolled me they probably told them what my check was going to be in order to get enrolled they want to know how much you get so………….


    1. I don’t know the income limits for extra help. If you wrote down your new income and they still enrolled you in extra help, that is wonderful. As far as I know, extra help provides help with the cost of prescriptions, but not doctors.


  28. you said soc sec doesnt know much about Medi-cal? well i know i was told oh well the soc sec office near you doesnt but this other one across town handles/knows about ssi/medi-cal, this was told to me by the 1800-772-1213 number


    1. Maybe I shouldn’t have written that, because it may be different in different states. From what I have seen, in most areas, people at Social Security do not know much about medi-cal.


  29. all i know is the 1800 number told me the chatsworth one did but the panorama city one did not and named off other Soc sec offices that do apparenly its to do with ssi-linked medi-cal


  30. well if you read the pickle it says federal law ab-04-ssi-ssdi-medi-cal and says……………….The Pickle Amendment. This amendment states that if an individual’s monthly income is over the SSI limit simply because they went from receiving the SSI stipend to the higher SSDI stipend, they maintain their eligibility for Medicaid. so sounds like there is some federal rule i think about only people who go from ssi to ssdi is people like me disabled before 22 disabled adult child they call it


    1. I hope this is true. It would be wonderful.

      From what I read, there were some special calculations regarding cost-of-living increases that were used to decide if someone could get pickle. But I may have misunderstood it.


  31. i keep getting 3 blind mice routine called local dpss office that deals with medi-cal he said he could see i had it BUT was administered by SS so have to call them


  32. oops thats what medicaire sent me a letter saying that also the 1800 number i was enrolled because of my situation i said well im trying to do right thing and tell medi-cal about the back payment she was like you dont have to, i said are you sure? i dont want to have a problem with medi-cal down the road she said in your case you do NOT have to report it i said you sure she said yes im SURE


    1. great work making all these calls! that does sound right to me, but if you are nervous about it, you could send them a letter that you got a “one time lump-sum retroactive social security payment.”


  33. sorry for confusion got letter from medicaire saying i was disenrolled from 1 program because i was in another…then called medical dpss he could see i had it but said to call soc sec, i called SS and told them oh well if i have to let medi-cal know about the backpay from you i want to make sure they know, she said you dont have to, she said i kept my medi-cal going to SSDI because of how i got on or something like that she said, i said your sure? she said YES


  34. if its administered by SS then apparently its a law and they probably electronicly notify who they have to if they are ones in charge of medi-cal for people like me


  35. forgot to ask BUT whatever it is they pay my 134 for B and the 32,90 for my D is paid for by something else through wellcare classic as of feb 1st


  36. i am out of town i called medicaire they located the letter, and said you were disenrolled from this program because you are enrolled in another, i forgot to ask i just know she said my part b is covered and my part d is covered


  37. the reason i do not think i have to re-apply for medi-cal is same reason why i was robo enrolled in it when i first got my SSI its LAW you get it so you just get auto/robo enrolled and i think thats what happened when i got my SSDI its LAW you get to keep medi-cal so they robo-auto filled in everything


  38. when i got my SSI i didnt apply for med-cal just next thing you know the card popped up in the mail i didnt do jack except get approved for SSI


  39. you know i could kick myself in the head 25,000 times i think my medi-cal is GONE i think extra help is doing my part D and i bet they shot me into the savings plan called qualified individual im under the income limit and it says apply call your state MEDICAID office so if that is technicly medi-cal/medicaid that would explain why medicaire says the state is paying for my part b


  40. I was recently approved for SSDI after many years of waiting. I was enrolled on SSI but was never told that by doing this I would lose all my SS back pay, which was the largest. I owe an arm and a leg since I became disabled on July 2011. Today I called for information since I have been receiving letters with mixed information and was told that if I had not applied for SSI I would have gotten my SS back pay (which is greater) in a lump sum. But since I enrolled in SSI, they will only honor their back pay and withhold the SS back pay. All I am getting from SSI is $135 a month. Was this worth it? They do not tell you this when they mailed me a letter to go to the office for an interview for the “additional benefits”. I think the additional benefits was for them instead of me since they get to keep my back pay.
    Any insights on this?


    1. Rocio,

      I’m not quite sure what happened.

      I’m going to take a guess that you were not on SSI, you were on cash assistance from your state. Does that sound right?

      In this case, they won’t take all your backpay. They just take back the money they gave you.

      Please take a look here. Some people give all their backpay to credit card companies and medical bills and then wind up with huge regrets about doing this. It depends what kind of debt you have and what else you own: https://howtogeton.wordpress.com/how-to-deal-with-debt-disability/


  41. if you got 135 bucks a month they will deduct 135 from each month of your ssdi for instance lets say you will get 1368 monthly and they owe you backpay at 1368 monthly it would be 1369-135=1234 times however many months your owed, so if you are thinking you will lose ALL your back-pay you wont


    1. Did the math and it does not match. I wonder if I am doing something wrong. I did what you said and it does not compute. In one letter they say I am entitled to back benefits from Feb 2014 through Sept 2017. So I added the number of months and deducted 135 for each month and the amount comes out as much greater than what I am being told I will get. I did exactly how you explained and I am not even close to what I am going to get.


    1. But thank you for your information. This way I have an idea what to ask them when I go to my appointment. Know I have the math to back it up.
      Thank you so much for taking your time to clarify this, since their letters are very confusing at times.


  42. after getting my ssdi I realize life is never going to be the same again. It is less income, a sign that things are not going well. I actually wish I was the same old person I was before.


  43. they sent me this crap https://www.co.shasta.ca.us/docs/libraries/hhsa-docs/coveredshasta/request-for-tax-household-information.pdf?sfvrsn=0 i rent a room from someone in the apartment am i considered by myself or even though i just rent a room i have to list them as well? i dont think they want anything to do with it they get ssi medi-cal and they are NOT required to fill this out for their medi-cal so can i just send in for me or i have to list them as well?


    1. If you see something that asks for your “household” information, that does not mean all the people you live with.

      For SSI and medi-cal “Household” means your economic household – spouse and minor children.

      When you fill out the form, you include only your information (plus spouse and minor children if you live with them).

      If you feel unsure, you can always enclose a note saying that you rent a room in an apartment and you have not included the names and financial information for the other people who live in the apartment. Or you can call and explain the situation to your caseworker. Hope this helps.


    1. As far as I know, if you are currently on disability, you won’t be able to stay on MAGI medicaid once your medicare starts.

      It looks to me like that bonita lawsuit extends your medicaid while they are re-determining, but doesn’t let you keep it forever.

      I still think your best option is to be below 2k in assets and then either:

      – lower your countable income by purchasing supplemental medicare insurance. If you get your countable income down to under $1235 you can get on medi-cal for aged, blind, disabled. OR

      – work a small amount, and qualify for medicaid for working people with disabilities. In some states you can qualify working even just one hour a month. You are allowed to have more income and stay in this program.

      Or just do nothing and pay 20% co-pays for your medical bills, plus your own vision and dental I seem to remember when we looked it up, you can still get in a medicare savings program to pay your monthly premiums.


    1. p.s. you mentioned last time that you are on qmb. I don’t know how you are on that since it looks to me like you have too much income, but if you really are on that and can stay on, never mind! 🙂 That will pay your co-pays.


    1. Magi medical is for people who are not on medicare. Are you sure that you are on MAGI now?

      I think my last post was not that clear. these are two different programs:

      – aged, blind disabled medicaid
      – medicaid for working adults with disabilities

      The financial criteria is different.


  44. i dont think im on magi then because my medicaire is active as of feb 17 the site says or offiicaly as of feb 1st 2018 so im confused and scared because if i lose my medi-cal co-pay and dont qualify for prescription drug help my meds will be 150 bucks a month easy


  45. im not sure what the worker is doing then just re-evaulting me so she can kick me off medi-cal or throwing me into something else


    1. I have met people who have successfully done it both ways.

      1. I’ve met several people who bought supplemental medicare and then their countable income was low enough to qualify for Aged, Blind Disabled Medi-cal. For example, I met one person who was just over the limit, he bought supplemental for $20/month and then qualified and saved $300 month on medical expenses. The people at medicaid often will not tell you that this is possible.

      2. I’ve also met people who worked a small amount (babysitting, pet sitting, making art, etc) and qualified for medi-cal for working adults. Here is someone who did this: https://howtogeton.wordpress.com/2017/07/30/how-pansy-got-on-medicaid-after-being-told-she-cant-get-on-medicaid/ Once again, the people at medicaid often will not tell you that this is possible.


  46. so i dont have to search through the thread can you list them and i cant work so i wont apply for something requires any work if i could work i would but i cant


  47. if i lose my medi-cal i think im in trouble prescriptions wise because i will end up spending at least 200+ on them..just great


  48. around how much would that be and would that allow me to go see my county Psychiatrist? my regular dr i dont care but my Psychiatrist i want to stay there, anytime you go to some new shrink its like a 3+hour instake….heck with that BS


  49. if i end up keeping my medi-cal i will be fine im saying if i end up straight medicaire then i will have to figure out what can cut my costs down


  50. question i thought i would be too high of a income for disabled medi-cal because i get 1368, the medi-cal lady said no i would not because the 1368 comes off my fathers record not mine, reason i ask is if it it is same for the medicaire savings/extra help programs i rather switch to them medi-cal is to fricking nosey, medicaire extra help/savings programs all they ask is anyone related to you or your wife thats IT so if my 1368 would not count against me for those programs i would just drop medi-cal


  51. she was lady at medi-cal who was evaulting me to get on, i said doesnt the 1368 make me over the limit? she said nope because its off your fathers work record/social


  52. has to be something like that because she put me on disabled medi-cal which i would money wise be considerably over the income limit IF they counted the 1368 im over by like 150 if they counted it


  53. yep im approved till next year and my income is actualy like 130 over so unless its what she said i would not qualify


    1. Wow. I just looked it up. It appears there is a loophole for disabled adult children to stay on Medicaid!!

      This is so good to know. I really apologize for giving you the wrong information and making you worry. I had no idea this loophole existed. It is very obscure!!

      I am really glad they knew to apply this to your case. It is good for me to know about in case I come across someone else in this situation.

      I am so happy this worked out for you.

      I do think that you still have to spend down your backpay within the time period. Or you could open an ABLE account and put your backpay in there 🙂


  54. i found it i found article saying dac people like me my SSDI DAC amount is NOT counted so not saying i ever would but if i had 2700 bucks DAC benefit id still get DAC-MEDI-CAL because they dont count my SSDI DAC benefit


  55. Thank you for this information. Especially your advice on dealing with post traumatic. I just got approved after more that 27months of waiting. I have Retinitis Pigmentosa and as stressful as it is to lose my peripheral vision, I had to wait all this time. I still feel the stress instead of relief because the funds haven’t come as of yet. It’s been only 5 days since approved but reading what you wrote about life after being approved really confirmed what I was feeling. I hope this blesses and encourages others that are considering giving up. Don’t give up. Seek help. There are plenty of great, knowledgeable and kind people that are willing to help in any way possible.


  56. I won my SSDI case almost two years ago before that I saved my student loans and work-study money in a CD that backs up a credit card to rebuild credit $5000! Michigan food stamps accepted my argument that this was not an asset and I won
    Now here in California they say its an asset to high for food stamps
    my $1,743 per month would get me $15 in food stamps but more importantly back on Medicaid so can I dump the $5000 into my brand new Able account?


    1. Did SSDI list your onset date as before age 26? If yes, my understanding would be, yes, you could put the money in an ABLE account and it won’t impact Medicaid. Please double check with Medicaid, I believe that is correct.

      However, if your monthly income is $1743 per month, I believe that would be too high for most forms of Medi-cal/Medicaid.

      Were you getting Medicaid while getting this much income in Michigan? Are you applying for a special kind of Medicaid? Sometimes special programs (like medicaid for working adults with disabilities) have higher limits.

      I hope it goes well for you.


      1. I was on medicaid before the Judges ruling and then kicked off I would get $16 off foodstamps but medicaid here in california objecte to the asets.in early childhood I was in a california state hospital for a year


  57. I feel like an idiot for even needing to leave a comment. I’ve been getting social security income since I was 14 or 15. My mom as been handling lituratly every aspect of it since. I started getting ssdi later. My husband and I have been married 3 years now. I just presently found an old letter from the social security administration listing things I need to report. Now I’m scared to death, beacase I’ve gone this long without reporting my marriage. Idk what will happen. I feel ashamed like a criminal. What do i do? What can i expect?


    1. Hi Meanie,

      I’m sorry to hear you are in this situation.

      You are not alone – many people just assume that SSA already knows everything about them and don’t realize they need to report.

      If your mom is your representative payee, I think it may have been her responsibility to report, not yours. (not totally sure about that).

      Do you know what type of disability you are on now:

      1. SSI – supplmental sercurity income
      2. SSDI from your own work (you worked and paid taxes)
      3. SSDI from your parents work (one of your parents is deceased, retired or disabled) This is also called adult child benefits.

      The good news is no one will go to jail or get into major legal trouble.

      The bad news is that there is a chance you won’t be eligible for disability while you are married, or that you may owe money back. There is also a chance there is no problem – it depends on what kind of disability you are getting.

      Hope this helps.


  58. Hello, I was wondering if you could clarify a few things for me. My son is 3 years old & was born with Down Syndrome. He was receiving SSI but was taken away. I was told the reason was that we had more than $2000 in the bank account. I read above that for married couples it was $3000. I’m confused on which one it is. Also, is this amount for his account or his & our accounts?


    1. To the best of my knowledge, it is $5,000 for a married couple with a child. $2,000 for the child plus $3,000 for the parents. Or 5k for the parents, and the excess is counted as belonging to the child.

      What did the denial letter you got say the reason was? (never go by anything someone tells you at ssa, only what you see in writing)


  59. I didn’t received a letter from SSA. I received one from his SSI Medicaid stating that they were terminating his coverage since SSA informed them that his SSI was ending. I was confused since we never received anything from SSA so I called his case worker. She stated that the amount allowed was $2000 and it showed to be over. I then asked her if it was for his account since we had to open one for him in his name. She stated that it included his and any accounts we had as the parents. I was a little thrown off since that is very little money to keep in several accounts for a family of 7 & our landlord usually waits 2 to 3 months to cash rent checks.


    1. I believe the $5,000 is correct to the best of my knowledge. The account in his name only is limited to 2k.

      If you have two cars, they will count the value of one of the cars. They also count some life insurance policies, stocks, bonds, etc.

      The information they give over the phone at SSA is often incorrect. If you want to be sure, you need to request a written copy of their calculations.

      Perhaps you could give your landlord a cashiers check? I am not certain, but I think that will immediately be shown as taken out of your account?

      If you are under the limit now, you should be able to apply again.

      There are some examples here, hope this helps: https://secure.ssa.gov/poms.nsf/lnx/0501330280


  60. Yes, we had all ready decided on the cashier’s checks. His account has never been over $1500 or so. But like I mention before, she stated $2000 total for all our accounts including his. I am calling SSA 1800 number now to see if they can give me better information on his account instead of what I’m getting from the local office. His SSI was just stopped last month. She wanted bank statements back to January to verify info. I think I will just re-apply. Too much explaining with the rent every month & having to print out 4-6 page statements for 4 months for my son’s account, my husband’s & mine is just to much work.

    Thank you so much for your help!


    1. Never call the 800 number with questions. They are completely untrained in SSI financial policies there.

      If you request an appointment at your local office with someone who specializes in SSI, you may be able get more information that way. You can also look at the link from the policy manual I posted above.

      If your family total was under $5,000 back in january, it is good to show them that, otherwise you may get a letter asking you for some money back for the months when it was over the limit.


  61. Oh yeah, like I mention earlier, we never received any letter of denial from SSA. We found out thru his SSI Medicaid which as of now he has no medical coverage. If they had at least notified us, I could have applied for regular Medicaid for him so he wouldn’t go with no medical coverage. He needs the coverage as he had open heart surgery (complete AVSD repair) & he needs to be seen by his Pediatric Cardiologist. No overpayment letter either, at least not yet. NOTHING in paper (writing) from SSA.


    1. I’m sorry your family is going through this. Yes if you are under the limit now, I very much hope you can reapply and get his health insurance back ❤


  62. Such a great abundance of accurate information! I would so appreciate the chance to talk with you. My case took four (4) years to be fully favorable, permanat.
    I’m on the east coast. I have been trying to find out how people (50 and older) are surviving on SSDI solely, adult and no other source of income or spouse, partener, etc.
    please let me know if you have an interest, my goal is a book!
    Thank you so much!


  63. I have 5 kids, two by my current husband they are with us full time. 3 by my ex husband, 1 lives with me but visits with my ex husband, the other two live with my ex husband and visits with me. How will dependent pay look with regards to the two living with my ex husband? I still pay for things for them, just wondering do I get their funds and continue to pay for things as usual OR do my ex get funds for them?


  64. I’m sorry if this doesn’t apply but I have a question….
    I have been on SSI for like 15 years or so for severe psoriatic arthritis. Social security sent me to their doctors for redetermination. My reevaluation was determined to be stable and able to work. I, of course, feel that their decision wasn’t accurate and appealed their decision. That was from June to December. My appeal was approved but haven’t heard from them since. I’ve called and was told that the office closest to me was closed. The operator then sent an email to the branch nearest me with my info and problem I have been having. No response….. I’ve called several times and have been told that they would have to investigate further and they would let me know as soon as they found a supervisor to call me back with my info. No returned calls…. My appeal was approved December 8, and I’m still waiting. What should I do? I’m really lost as to what to do next….
    Thank you for your time.


  65. for medi-cal in california anyone know what the letter from department of healthcare services is from sacremento? im out of town but my mailbox shows pic of the letter front


  66. I submitted my online application for SSD in February of this year. As of yesterday, I went online for a status update and found that after only 5 (grueling) months, I’ve been approved. Blessing or a curse? Prideful for year’s, I tried pushing through my pain. Bills have got to be paid, right? Finally, I was made to sit down.

    I received a call from a company who stated they work in conjunction of my insurance, and noted that I may qualify for disability. I listened and of course there’s always fast-talking and a hidden fee attached. So I instead of being interviewed, I began to interview them and asked “what were the flags that made you think that I could potentially qualify”?

    Before I set out on my on to apply, I immersed myself in researching. I wanted this claim to be fail proof. By going onto the SSA’s website, and YouTube for free disability (attorney) consultative advice regarding my impairment(s), I armed myself with what I felt is complete understanding of what is considered “severity” according to their rules.

    I gathered every medical record that I could possibly get my hands on no matter how many year’s they were prior to the filing date as long as they were associated with my impairment. I listed doctors living, or deceased. Practice opened or closed it didn’t matter. I made every follow up appointment took every medication and reported every side effect. I was DETERMINED!

    However, what I was completely unaware of was “after the decision is made”.

    There are so many things that I’d been completely unaware of until now. What a wonderful resource this is. I haven’t been able to put this aside. – No kidding

    I’ve gone from one resource to another within your website that a new day has come and yet I feel both excited and refreshed.

    Thank you for your time and efforts in keeping us up to date and informed.


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