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.

🌷 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 SGA, they may look into this more, particularly if you did not notify Social Security about the work. If what you write on this form does not match your IRS records, they may look into this more.

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


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

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

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

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


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

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

If you 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.

More things that can raise or lower your SSDI Check: Good News and Bad News About Your SSDI Check

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


Most people receive backpay for the months while they were applying. The amount of backpay you receive will depend on your Established Onset Date. See section on onset date above.


There is a possibility some things will be deducted from your back pay before you receive it. The things that can be deducted are:

  • Your lawyer’s fees
  • Taxes you owe
  • Child support you owe
  • In some cases, government student loan debt
  • In some cases, money owed to other government agencies

In addition if you received any of these things while you were applying, there is a chance the amount will be deducted from your backpay:

  • Workers comp
  • Cash assistance (state, city, county)
  • Certain forms of rental assistance (Most common in New York)
  • State temporary disability (CA, NY, RI, HI, NJ)

No one else is allowed to garnish money out of your backpay check without your permission. There are special regulations that protect Social Security checks, however you need to take certain steps to get this protection: Learn more about Debt & Disability

Lawyers fees are taken out of your backpay automatically. Other kinds of deductions are more complicated and may slow down your backpay check. Sometimes it gets slowed down a lot or the process gets stuck. If this happens, you can contact your Congressperson’s office. They can help you get things moving again.


Your lawyer’s fees will be explained in the contract you signed with your lawyer. According to Social Security regulations, they are typically up to $6,000 or 25% of your backpay. If your case had multiple appeals (denied at a hearing and continued appealing), these rules no longer apply, and fees will likely be higher.

If your lawyer made significant mistakes on your case, or you are unhappy with your attorney’s performance you can contact the judge’s office (this office may be called ODAR). Someone there can advise you on how to contest lawyer’s fees if you wish to try.

In addition to lawyers fees, many lawyers will send you a bill for the costs they spent collecting your medical records – a few hundred dollars is common. These fees are not removed by Social Security. They are a bill from your lawyer.


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. Except in rare circumstances, it will not be more than 12 months before your application date. A lot of people are told wrong information about this.

There is a five month waiting period before the date your backpay check starts. The clock starts ticking on your Established Onset Date. See section above on onset dates.

If your Established Onset Date was a way long time ago, this will have no impact on you, because those five months will have expired long before you became eligible for payment anyway.

If your Established Onset Date was recently, you may lose those five months of pay. Or you may be able to collect five months of backpay from SSI during that time.


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.


If you applied for disability in the past and then got turned down and then started a new application and then Social Security decided to reopen your old case then… you will get a lot more backpay. Your backpay will be set based on your previous application.


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

Tip from Rose: “When they start your Medicare, they will give you the option to start it now, or to pay the back premiums and backdate the start to when you were first eligible. Unless you have outstanding medical bills, there is no advantage to paying all the extra premiums.”


If you 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

401 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.


  67. like 5 months ago even though i was allready on the higher payout disabled adult child they made me apply for disabled adult survivor because my mom is decased, im assuming that “A” i cant get both and so ill only get what i allready have and “B” if its a denial letter it does NOTHING to the benefit im allready on? reason i ask is it shows on my soc sec says decision made but then does NOT say what the decision was so now i get to play waiting game for it to come in mail


    1. Survivors benefits would make your check raise. You won’t get both, but your check would go up. I am sorry for the loss of your mom. I don’t understand how it could possibly be a denial letter?


  68. if i coudnt get both how would my check go up? the max i can get off my fathers is allready what im getting half what he gets


  69. well i know 100% my dads work credits are higher getting denied for this one does nothing to what i allready have right?


    1. No I can’t see anyway it would hurt you. But I also don’t see how you would get denied, They should just give you which ever benefit is a higher monthly amount.


    2. If you get any backpay, it would be good to be mindful about having resources for Medicaid.

      The form of Medicaid that you are on… I think it allows you to go over the income limit with your new benefit, but you still need to stay within the asset limit – money in the bank. That is what I have read.

      In many states, Medicaid does not count backpay as a resource right away. For example it might not count for nine months, but I don’t know every rule for every Medicaid program. Most people spend their backpay before the nine months is over so it’s not an issue.

      Thank you for letting me know about this Medicaid rule for Medicaid continuation for disabled adults children. It has been really helpful.


  70. i allready have ssdi dac under my father i know 100% his is higher then my mothers because she died long ago so nothing will happen except ill get same as im getting now?


  71. rules for SSDI backpay and medicaid are you have 9 months to spend it then when they review you again you cant have over 2k in bank


  72. curious question to avoid the family maximum when my stepmom files do the combine their pia/family max? because she would be entitled to around 1200 on her own record just scared to death my check may shrink BIG TIME when she files for full age 66 next year on my dads not sure if they will pay her all of hers and then the rest off his or pay it all of his resulting me getting clippered


    1. Sorry I am not certain the answer to this. Is she planning to collect of his record instead of collecting off her own?

      There used to be a loophole where couples would collect off spouse for a while and then switch to their own, but they changed the law a few years ago to close the loophole.

      I’m not sure there would be any reason for her to do it that way?


  73. https://www.ssa.gov/policy/docs/ssb/v75n3/v75n3p1.html down in special cases section it says Dually entitled beneficiaries. These beneficiaries are entitled to worker benefits based on their own earnings as well as auxiliary benefits based on someone else’s earnings. In dual entitlement cases where the auxiliary benefit is higher than the worker benefit, the dually entitled beneficiary receives his or her full worker benefit in addition to a partial auxiliary benefit does that mean in my step moms case they will use her money up and fill in rest from his?


  74. i allready carefully read it she can get 1200 off her own record or 1368 like me off my dads they will use her 1200 up and then fill in the rest off his up to 1368


  75. a spouse can only get half like me which is 1368 my dad said on her own record she can get like 1200 in these scenarios all you can get is half which is 1368 so if you read the article i showed you carefully where it says special cases https://www.ssa.gov/policy/docs/ssb/v75n3/v75n3p1.html says …….In dual entitlement cases where the auxiliary benefit is higher than the worker benefit, the dually entitled beneficiary receives his or her full worker benefit in addition to a partial auxiliary benefit…the worker would be my stepmom the auxilery would be my dad so all seh could get would 1368,1200 off er record like 168 off his


    1. ok, your dad is at the very top of the ssa food chain 🙂 if that is half of his, he is getting almost the highest anyone can get.

      I’m afraid I don’t know these rules. Generally what I have seen happen is if someone else declares on same income record while the person is alive, then the dependent benefits are split.

      So you and your stepmom would each get around 700.

      That amount won’t help her…. it’s lower than her own benefit….

      I’m sorry I don’t know all the intricacies, but I would hope/assume she won’t collect if her own benefit is higher. Couples used to do that, but they closed the loophole so I’m not sure it’s advantageous anymore.


  76. i read it like 10 times to make sure i read it right a spouse can either get her own record if its higher then half her husbands OR her own plus whatever it takes off his to get it up to half his amount she can get 1200 on her own or half of his 1368 so they use 1200 off her record and 168 off his as i said i read it like 10 times to make sure and also im on forum called mdjunction their is a knowledgable person their and he confirmed i was interepting this article where it says special cases correctly https://www.ssa.gov/policy/docs/ssb/v75n3/v75n3p1.html


  77. that link is the rules straight off Soc Sec site, my dad said Soc Sec told her her own record=right about 1200 she can get half like me of my dads which is 1368, so it goes 1200 from HER money the remaining 168 from HIS money i have friend at another site called md junction he is a attorney, i told him what i just told you, he said i was interepting the rules correctly


  78. no his family max i forget which lady said was either 175% or 188 well 175% is like 4780 max pay out if its 188% its like 5180 well 2734+1368=4102 and i told you she can get 1200 off HER work record not his so to get her to 1368 they use 1200 of HER money and 168 of his so 4102+168 is only 4270 his family max is either 4788 or 5180 depending if it was 175% or 188% i forget which the lady said go read that link i told you it says EXACTLY what i just said she has 1200 of HER own money so they use that first and then the 168 from his and the 1200 of HER money does NOT go towards his family max because its HER money all she would be getting from HIS money is around 168 bucks go read the special part in that article


    1. I’m not an expert in this. My understanding:

      if his family max is 175%

      he gets 100%

      you and her split 75% – about 37% each

      would put her at about 1000. her own benefits are higher than that though.


  79. straight off soc sec site pay attention to last sentence…….Dually entitled beneficiaries. These beneficiaries are entitled to worker benefits based on their own earnings as well as auxiliary benefits based on someone else’s earnings.9 In dual entitlement cases where the auxiliary benefit is higher than the worker benefit, the dually entitled beneficiary receives his or her full worker benefit in addition to a partial auxiliary benefit. The total benefit is the same amount as the full auxiliary benefit. For these dually entitled beneficiaries, “the family maximum only applies to the auxiliary portion of the benefit”….SEE LAST PART? family max only counts the 168 he would be giving her to get to 1368 from 1200 of her OWN money


  80. 87% of the max she could get would come from HER earnings means HER earnings dont count towards HIS family cap only about 168 bucks would come from his even at 166% of pia his family max is like 4580 but im 100% sure she said it was 175% or 188% or she might have said its between the 2 either way we should not hit the cap


  81. Can I still receive medicaid and food assistance and withdraw my current application for ssi supplemental?
    I just filed over the phone and have recieved my package. I need to sign and give them copy of my divorce decree. I have not done this yet.
    Can I call and tell them I do not to proceed at this time?
    Do I need to give them the specifics about my request to withdraw?
    I’m not sure its even processed even though I had a phone interview to open a case.
    Thank you for your insight.


  82. I just wanted to make a post for my gratitude to anyone or everyone who is writing on here. If it wasn’t for all the information here I really don’t think my claim would have been accepted and this site acted as a sense of reassurance and hope while I was at a very helpless and destitute point in my life. I recently had my claim accepted and wanted to say thanks sleepygirl. Not to be dramatic but you may have saved my life.


  83. OMG!! I am at the very beginning of getting everything together to apply for SSI disability. Your blog is priceless!!! I was just diagnosed with Pancreatic Cancer and have only just started chemo, radiation is next. This all came up very fast (30days). I was unemployed and ran out of unemployment compensation. Lucky me, I have a fantastic family that has been helping me. However, they can’t do it forever!! So decided to give SSI/Disability a try. Thank you & bless you!!!


  84. question about being on SSDI and medi-cal in california specificly the medi-cal review the want me to fill out a property supplement form which i have it scanned to upload they allow uploading the documents, well i got a 5000 buck Soc Sec back payment and they told me that i have 9 months to spend it before they count it,but trying to take a screenshot of my bank account will they allow that or will i have to go to bank and ask for it? it says on form submit bank statements i guess the S is if you have more then 1 but it just says sstatement with current balance


    1. most online bank accounts have a place where you can download or print a copy of your bank statement. can you do that? do you see something that says print or download?


  85. also after 9 months do they make you submit receipts? to PROVE where it went? if so im DOOMED because i didnt relaise this and didnt save receipts for a LOT of it


  86. i asked my worker he didnt seem to think so and i asked another person who does same type of medi-cal reviews and he said same thing, question your assigned worker is person who does your review right? i mean he wont review me and didnt ask for receipts but then get letter asking for them? or if they were would be from my case worker?


  87. im saying they dont have more then 1 person looking at my case for review? should just be case worker reviews me once a year and thats it?


  88. question in futurein case they did want receipts what is stuff i can spend it on to spend down without them saying oh well now the stuff you have is assets?


  89. EDIT FIX OF MESSAGE ABOVE…..do they do a look back in you bank account do they scour your account or just look at the start and end balances?


  90. well i dont know if he knows because my review isnt DUE untill dec the system sent me the 1 form online but apparently he isnt due to review me untill then i dont know if either the system will shows him all the things he has to ask to for yet or not till dec


  91. question these rules apply to anyone who gets on after the effective Date? read down to When will we begin to use these final rules? https://www.federalregister.gov/documents/2016/09/26/2016-22908/revised-medical-criteria-for-evaluating-mental-disorders these last sentences if im reading it right its for anyone on who is newly on or trying to get on after the date they implement it? “When the final rules become effective, we will apply them to new applications filed on or after the effective date of the rules, and to claims that are pending on or after the effective date”


    1. these are just updates to the rules that were already in place. the updated version went into effect january 2017 and it says it applies to all new and pending claims. I don’t see it addressing earlier claims, but these rules are not dramatically different than what was there before.


  92. it says see “1” and says this lower down this sounds like new or old but im not sure…… This means that we will use these final rules on and after their effective date, in any case in which we make a determination or decision …..does that mean the new rule applys to everyone or people who get on after?


  93. https://www.dhcs.ca.gov/services/medi-cal/eligibility/Documents/95-14.pdf read down to right before the first line seperater does this part mean that anything i get off my fathers is not counted including backpay? it says money recived off parents work record is dac and says in the article if you read it says when determing eligability dac money is disregarded actualy this article is from washington but the dac rules are federal not state so its same read where it says disabled adult child https://www.hca.wa.gov/health-care-services-supports/program-administration/income-special-disregards…says disregard total dac income


  94. its second time it says dac on the washington page it says Subtract the total DAC amount; its under 3 second time it metnions dac medi-cal down lower


  95. actualy the dac rules have not changed because when i got on i remember 100% the intake lady i said wait isnt my amount over the limit for medi-cal because i get 1368 she said NO because its off your FATHERS record not youres so we disregard whole amount…THAT I REMEMBER 100% from when she got me on


  96. im wondering if they disregard my 1368 because its off my fathers record i wonder if they disregard the backpay as well because its off my fathers record not mine


    1. The backpay will follow the normal rules for medi-cal. I believe it’s excluded for nine months.

      For your income, you are the person who taught me about that rule 🙂 You keep medi-cal even though you are over the limit because of a special protection for DAC.

      However, you still have to be under the asset limit, and other income would still apply normally.

      Federal rule is here:


      If it’s a lot of backpay, you might look into opening an ABLE account and putting it in there.


  97. ya that link you showed in the dac section makes no mention of the backpay but since that 1 link says disregard benefit because its on my fathers i wonder if they have to disregard the backpay because its not off my record? your probably right but would be nice, i mean beleive me you talk to people at local medi-cal office the people working on my medi-cal dont even seem to know i THINK they wait for their system to spit out what do on my record i think they dont even know what do for sure…lol


  98. i think thats why when i tried asking my case worker to look at everything now i think thats why he kept saying wait untill its due in dec because, he doesnt know what to do i think the system spits out the info for him to follow so he wont do anything untill the system gives it out


  99. i think dac medi-cal is probably that rare for them that no one knows the rules they wait untill the system tells them the prcedure to follow


  100. i just realised exactly why they dont know right now because they are the county but i think they have to get data from the state or something as well


  101. if they do say they want to see proof where you spent it all im SCREWED i was on ssi never saw this review stuff from medi-cal before and all they said was you have 9 months to spend it but they did NOT say oh after 9 months we might ask you to show receipts/show exaclty how/where you spent it…im still not sure if they will or not because even my case workder i think the computer system hasnt spit out my particulars telling him what exactly to do


  102. so i guess im wondering lets say they ask for receipts and say oh well since you cant prove you pent it your over, i wonder whatmy options would be i mean i wonder if i filed appeal and talked to supervisor if they would make me sign a statement saying i spent it all and leave my medi-cal alone or they would take me off still or what? now im nervous as heck because right now medi-cal pays my mediciare part b which is 134 +they co-pay when i see dr,s and i think even pay my premium on my part D so all in all id be screwed to tune of 300 bucks easy per month if i lost my medi-cal


  103. you think they just look back in my account and see my start and end balances? or i wonder if they realy look and see what you buy or you just took out money?


    1. I’m sorry I don’t know the answer to that. If someone took out large amounts in cash, or wrote a large check to someone with no way to explain why, that might cause questions.


  104. if just choose to buy certain things what can i buy that wont have them saying its a property asset or whatever its called?


  105. what i mean is if i buy a nice tv with my back-pay are they going to call the tv a asset or is it exempt? from being counted as a asset?


  106. well i forgot where i saw it but dac-medi-cal supposedly follows the SSI income rules except for fact they disregard my monthly ssdi amount


  107. so if they do follow the ssi rules can i buy a nice tv with my backpay and not have it counted against me? ill ask my worker when i can but he is on vacation


  108. i think i screwed myself right out of medi-cal see when i got the backpay i took it out most of it in cash and the people as SS were like you can spend it any way you want, the medi-cal lady who inducted me all i honestly remember her saying i couldnt have over 2k after 9 months in my account she didnt say anything about oh well at review time they willl look at your bank account for PROOF that you spent it, i didnt mean to do anything wrong, i mean i was on ssi from 21 years old was homeless from 18 to 20 i NEVER worked when i got on SSI i didnt see much of my back-pay because a place called harber view house gave me place to live and their people got me on so most of backpay went to them, but point is i have never dealt with taxes or even med-ical before i automaticly was on medi-cal and if they say oh all you have to do is spend down i dont have the money anything i bought i saved receipts just untill i figured i coudnt return something then tossed em i didnt realise this would happen it hasnt yet but i smell it coming when the review starts, s i dont know if they will cut me off or if they will have me sign a afadavid stating that yes i spent the money on cloths food electronics etc but i didnt realise i have to save the receiprs now im scared to death i have medicaire but who knows how much medicaire would be without medi-cal and if medi-cal froze me i coudnt even get extra help i dont think becase thats medi-cal as well isnt it?…….


    1. hi leonard,

      I honestly don’t know if this is something they will review or not. It may not cause a problem since backpay is excluded, I don’t know if they do a full review on how you spend backpay. If they ask you about it, all you can do is tell the the truth about how you spent the money, and yes perhaps they may have you sign an affadavit about this.

      So far, I have not heard from anyone who had a problem with their backpay as long as it was spent within the nine months, as you were told to do and you are doing 🙂 so hopefully this will turn out with no problems.


  109. the SS lady said i could spend it anyway i wanted the medi-cal lady all ihonestly remember her saying was i had 9 months to spend it no one said make sure you spend it out of your bank account or save receipts because they will look for PROOF you spent it…if they had i would have gotten a shoe box and lebeled it receipts and kept em all i fear i screwed myself


  110. it realy depends i guess if he either “A” realy looks at everything i did every month in the account for “B” if he just looks to see what the balance is i figure minus my monthly SSDI amount because my monthly amount isnt counted if its “A” im screwed if its “B”
    and he can get away with just saying he looked and my account was under 2k im fine but i fear its “A”


  111. ya but they may think im hording some if they look because some i took out large chunks i allways like buying stuff with cash unless its something i HAVE to buy off card like online or something


  112. and reason i didnt keep receipts? most stuff clothes and even lots of electronics after 90 days or 6 months doesnt matter if you have receipt or not realy as long as you registered it on their site


  113. i know its excluded my fear is they realy look at the account and say oh he pulled out large chunks of cash and think im hording money and since i didnt keep receipts they would think i was holding money and screw me


    1. I think the best thing to do is just wait and see what information they would like from you. It sounds like you followed all the directions you were given and did exactly what the ssa and medi-cal workers told you to do. I haven’t heard from anyone who had a problem after spending their backpay, so this may not be an issue for you at all 🙂


  114. wondering if they decide i didnt spend it right and say i have 11k i wonder how much my share of cost would be? per month or year


    1. I know it’s hard, but I think the best thing to do is wait and try not to worry about it now. As I said, I haven’t heard from anyone who had a problem with their backpay spending.


  115. ya but i dont know if any of the people who did exactly what i did just didnt know about your thread…lol i mean i pulled large chunks out in cash dont have receipts showing in account or receipt itself for probably like half the amount, so not sure if seeing large chunk was taken out by cash what they will do if anything…hopefully your right


  116. question for you sleepy, you said this “I haven’t heard from anyone who had a problem with their backpay spending. ” but do you know if they did what i did?


  117. as far as the backpay you might be irght i dont know because when i talked to lady who got me on she was like im not your worker i just got you on, but, when i was mentioning to her she was like well you cant have over 2k in bank i said so i could just pull it out? she did NOT say no you cant do that, she was like i cant condone that or im not allowed to say anything like that, i mean if it was a hard rule i would think she would have said no you cant do that, but she was basicly acting like she just wasnt allowed to say it, im not sure but if its not in bank they dont look behind the curtain wanting to know where it went…..im not saying for sure thats what she was hinting at but thats the vibe i got out of it


  118. what i mean is she did NOT flat out say ya if you just pull the money out your going to have a issue, i mean if that is flat out not allowed i would think she would have said yes you will cause yourself problems if you just pull it out


      1. Will problem is my worker now is not the girl who got me on and when I speak to my worker now he doesn’t make any mention like he knows about the back pay so I don’t know if I mentioned it to her in the phone conversation and she forgot to put it in the record or something and I think we both know if she forgot to put it in but doesn’t want to admit it we both know they’ll take her side


  119. just curious do they do your re-newel in house or do they have to sync it with state system or what? i mean is if the county LTC medi-cal is sending me the paerwork do they have to get approval from the state or the county does all of its own redtermination info? i guess i mean is once the state sends my info once a year saying im still on ssdi dac so im eleigable for non magi does the county office do it all themsleves or do they login to the stae system and they get approval? just curious if anyone knows


  120. i POSSIBLY am worrying for NOTHING but i dont know i think their system is going to rememeber the back-pay and want proof how/where it went, so my wonder is what the heck do i do IF they kill my medi-cal? i mean is their a option with mediciare or some 3rd party that will pay my part b and d co pays?


  121. question for you if they notice i spent the money in cash are they going to tell SS to assign me a payee? this is first time EVER i have had a issue with my finances


  122. i merly confused what the SSA lady said about the back pay she was like you can do whatever you want with it so didnt realise for medi-cal side if you take it out in cash save all the receipts


    1. Leo, I do not know if you need to have receipts for backpay. It may not matter. If you feel unsure you could call your worker and ask if this is something they even ask for.


  123. .have you any experience with anyone who got bakpay and took out a large chunk in cash and if they got asked for receipts or not?


  124. i will try and call them today but i THINK i did and it went nowhere, do you know any legal aid in my area i could call that woud know?


  125. curious question if medicaid/medi-cal kicks me off for being over their limit will in then be able to apply for medicaire extra help as long as im under their asset limit? because it says… DO NOT complete this application if you have Medicare and Supplemental Security Income (SSI) or Medicare and Medicaid because you automatically will get the extra help. but if medicaid boots me off that means i dont get it anymore and SHOULD be able to get it as long as im under its limits


  126. question about a able account, if i toss some money in there its exempt from being counted as a asset right? and can i just leave it in the account? because i will just leave it for a emergency


  127. well im saying am i required to spend it each year or can i just leave it in? i mean can i just save save save or do they evntualy say it has to be spent?


  128. well ya id spend it eventualy im just saying who ever medicaid or whoever isnt going to say i have to spend some of it EVERY year, that if i want i can just save save save, so if crap hits the fan and i have some EMERGENCY i have to take care of then id put it to use if it was a authorised expense


  129. i hope to move because where im at in 1 respect is terrible situation im renting a room in the apartment on the SLY, he wont let me get any mail there so my living address is there but i have po box, also he wants his rent in cash wont even give me rent receipt,, i have known him long time i KNOW 100% he wont take my money and boot me out or anything like that, but since the building management doesnt know im there he wont even give me a receipt or let me pay check or money order and i know because he told me when it happened he had a roommate and they coudnt pay and he had to move them out and he had to go the legal route to do it… so now anyone lives there he wont let em get mail because if someone gets 1 piece of mail “THEY HAVE ESTABILISHED RESIDENCY” and then you need a crowbar the size of the planet to get em out if they want to fight


  130. when i do move, will showing medi-cal my social security letter with the address be enough? reason i ask is where i MIGHT be going its same thing my landlord there said YES he will give me arent receipt/let me pay check or money order BUT he is renting a house and he isnt going to put me on lease BECAUSE the landlord never even comes my friend mails him the checks the landlord lives out of state, so my friend was like the landlord doesnt even ever come here so im not going to get charged more for another person


  131. im not 100% but as soon as SS transfers me to that area i think that would be it, they didnt ask me for any proof of address the lady just asked me all the questions to ge me inducted in


  132. what i mean is when i got on this medi-cal they didnt ask for any proof of address or anything i think they got all the verification for my address from SS


  133. question if you have medi-cal and medicaire because your on SSDI but you would rather just pay a little more and get on the extra help b and d programs an get off medi-cal can you do that or do they force you to use the medi-cal?


  134. question i see alot of talk about the 30 month lookback for medi-cal was wondering did they do that when i got in in january? or do they do it at my annual redetermination? or both?


  135. what worrys me is i WAS for my bank using my girlfriends address as my bank address because my landlord wont let me get anything here im wondering if medi-cal will notice the differnce between what i haev for my living addrress and notice the bank address and cause me a problem?


  136. we broke up so my bank went back to po box but i fear if they see i was using hers they will think i moved i didnt i was gettting stuff delivere to her place because im not allowed mail where i live


  137. so the ddress thing you dont think they will noitce/care as long as it not out of state? because medi-cal is administered by county your in


  138. wondering if for my property supplement i was supposed to list paypal as well? it says list checking or savings accounts and as far as i know paypal is neither of those 2?


  139. my Paypal only has like 200 buck balance usualy i buy anything it pulls the money from bank usualy the balance will be like 100 a month


  140. Hi, thanks for all the information! I am applying for SSDI and everything i have read says i will get backpay from the time of applying or onset date. But you say above it’s only 12 months? are you sure about this?! Where do you find this info? thanks again.


      1. Hi, I re-read it and i think you mean retro from the time you applied. not just 12 months AFTER i applied. cut and pasted: “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.”

        my question is this: i applied in august of 2015 and am awaiting my award letter now (it’s been 46 days since court). When I am awarded, i will get all of those months (basically three years +) worth of back pay minus the 5 months, correct? Thanks!


        1. Hi May,

          Thank you for clarifying. I will make that sentence clearer.

          The amount of backpay that you will get will depend on what date the judge decide that you first became disabled.

          If you are applying for SSI then the highest possible backpay you could get would be starting August 2015.

          If you are applying for SSDI, then the highest possible would be August 2014.

          However, it could be less than either of these dates. Depending on when the judge decides where is your disability onset date. I hope this helps.

          PS I think it may actually be September not August.


  141. ah ok. that clarifies. thank you! my onset date i used is the date i stopped working and applied. however, as the judge heard, i had 20 years of working and then not due to CFS including short term disability from California in 2010 for one year. then i stated my doctor asked if I wanted to go on ssdi or work. I said i’d trial work which i did part-time until august 2015 when I quit entirely. So if the judge is nice and fair, maybe he will set my date back further as I spent so many years trying to avoid applying (i don’t know why now). but at least I will get most of it and not just 12 months backpay. thanks so much! you are so helpful


    1. It may depend how much you were earning. Most commonly, it is set at last day worked. If you were poor in August 2015, make sure to go to your SSI interview, you may be able to get SSI during the five month waiting period. Then SSDI would start to kick in around February 2016. Congrats on the approval.


  142. Hi, i haven’t actually gotten my approval letter yet, just being optimistic! i have many tests, including june/july 2015 POTS dx, with echocardiogram results by dr. cheney, CPET ithaca bike test (july 2015), Neuro Quant MRI, two more echo results stating disability in 2016 and 2018 along with the QEEQ from Siber imaging ALL stating disability. plus the few years, esp 2014 and 15 ALL had tons of doctor’s appts stating CFS. plus a few other things from other doctors after i applied. I can’t imagine that i wouldn’t get it! if there is gold standard proof for CFS, I did them all with confirmation of disability! yes I was poor in august 2015 to feb 2016! thanks for letting me know that. I was planning on ditching the SSI interview as I assumed I made too much with ssdi and with a rental income that I had to start in 2016.


  143. i talked to lady from legal aid who deals with medi-cal she looked by by medi-cal card number that my code for medi-cal is 6C for Disabled Adult Child medi-cal, i asked her are they going to care how i spent it and she said the rules for the type you are in they wont ask you NOTHING unless your going into a nursing home or long term care facility which im NOT


    1. I hope that this can give you some peace of mind leo. I know that everything you did with legal and following the rules that they told you anyway, but it is good peace of mind to feel that they won’t question you more. Good work. Thank you for letting us know.


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