Everything No One Ever Tells You About Living on Social Security Disability


Below is a long list of everything that nobody tells you about living on Social Security disability.  Please share this list with anyone else you know who is living on disability. It can save you a lot of time, money and heartache.


First six months: If you were approved recently, please take a look here: Everything No One Ever Tells You After You Get Approved

Back pay: If you have not yet spent all your back pay, please take a look at the section on back pay in the link above.


If you are homebound or have difficulty leaving the house, check out many services and ideas here: How to Be Homebound.


Marriage, divorce, separation, kids, relationships, and widows can have a big impact on your Social Security check: How Does My Love Life Affect My Disability Check?

If your life or finances change, you may need to report this to Social Security: What Do I Need to Report to Social Security?

Most people are eligible for at least $735/month (In California it is at least $890). If your disability benefits are lower than this and don’t know why, it may be worth looking into: How Come My Check is So Low?

In some situations you might be able to get both SSI and SSDI: Can I Get Both SSI and SSDI?

There are several different forms of disability. Double check you are getting everything you are eligible for: Different forms of disability


If you are having difficulty finding a doctor, practitioner or medical supplier that takes your insurance, both Medicaid and Medicare have online directories of doctors and medical suppliers.

It’s a good idea to check in with your doc about their retirement or relocation plans. Plan ahead so you will always have a good doctor.

Don’t stop now! It’s incredibly important to keep having Good Doctor Visits That Create Accurate Records. This will help you if you are still disabled when your disability comes up for review.


If going to the doctor exhausts you are worsens your symptoms or feels daunting or impossible: How to Go To The Doctor Without Crashing

Great ideas for planning ahead to help your doctor visits go well: Rebecca’s Amazing System for Organizing Medical Appointments

How other folks on disability handle their doctor’s appointments: How Talking to Your Doctor Can Help (or hurt) Your Disability Case


If you are in need of a wheelchair, mobility scooter, walker, or other medical equipment, check out How to Get Medical Equipment

If you need grab bars, wheelchair ramps, larger doorways, other home modifications, check out How to Get Home Modifications

There are many transportation programs that may help you: Medicaid taxis, paratransit, wheelchair services, disability discounts, airline assistance, medical transport, and more. Check out Transportation for Spoonies

If you have an invisible illness that makes walking difficult, don’t be afraid to get a disability parking placard. It can be a big help and is very easy to do. Primrose Get a Disability Parking Placard


If you need someone to  help care for you, you may be able eligible for a home aide program. Services including caregivers, nurses, physical therapists, meals delivered, and sometimes home visits from doctors.

If you need assistance with both personal care (bathing, eating, dressing, mobility, etc), and household care (shopping, cooking, cleaning) you may be eligible for a state home care program. Success stories from readers: How I Got Approved for a Home Aide

If your condition is severe and a friend, loved one or family member is providing personal care for you, you may be able to get funding for the person who is caring for you. This program is designed to keep people out of nursing homes. It is designed for people with “nursing home level of need.”

If you have a live-in aide or live-in caregiver, you may be eligible for some of these Extra Special Benefits for People with Live-In Aides.

If you have an aide or caregiver funded through a Medicaid program, check out these: Extra Benefits for People in Medicaid Waiver Programs


If you ever begin working, it is important to notify Social Security. Notify them in writing and keep a copy of your notification. Send it by certified mail and keep the receipt or bring it to the office and get a receipt. If you are on SSI, there is also a smartphone ap you can use to report wages. If you ever run into problems, you can use this receipt to prove the problems were not your fault.

There are a bunch of other things you might like to know if you are working or considering working: How to Work Without (Too Much) Trouble

You may receive letters or phone calls from Ticket to Work or back-to-work programs. Don’t be freaked out if this happens. They are not targeting you. These are sales calls. These agencies make money by getting people to join their programs and go off disability. If you are recovered and would like to go off disability and go back to work, you may want to contact them. They can help.


Many of our readers are shocked to find that their medicaid gets cut off at some point after they get approved for disability. Start planning now so you can have what you need in place when the time comes.

SSI – Don’t worry. Your Medicaid will continue

Disabled Adult Child Benefits – Your Medicaid should continue. If it doesn’t they have made a mistake. Look here for more details:  Adult Disabled Child Benefits

SSDI – It is highly likely that your Medicaid will end. This may happen as soon as you are approved, or it may happen when your Medicare starts. Luckily, there are other Medicaid programs or other programs you may be able to apply for.

Tip: Don’t just contact medicaid and accept whatever they tell you or give you. Do your homework. There may be more programs you can apply for that they will not tell you about. How to Escape Medicare Fees

Please don’t wait til the last minute. It can take several months to apply and be accepted into a new medicaid program.


If you have debt, you may have some options. Learn more about Credit Cards, Medical Bills, Debt Collectors & Disability Checks

You may especially want to take a look at this guide for Social Security regulations and debt: How To Protect Your Social Security Check

If you have student loans, please read this immediately: How To Escape The Crushing Weight of Student Loans

There are special rules for food stamps for people with disabilities. You may be eligible for more food stamps, or qualify for food stamps even if you were turned down in the past. How to Get Enough Food Stamps to Actually Eat

Don’t learn this the hard way. Here’s How To Get a Free Phone That Doesn’t Suck

If you are poor or low-income, there are about a million more things I would like you to know. Please look here: How to Be Poor in America


If you are looking for cheaper rent or better housing options, check out: A Long, Long, Long List of Places You Can Call if You are Seeking Affordable Disability Housing

Section 8 Housing is the key to financial survival and stability for many people people with disabilities. Section 8 Guide for the Plucky and Disabled

If anyone tells you that you can’t get Section 8, or there is no available affordable housing, don’t listen. Be like Dandelion: Dandelion Gets Nice, Affordable Housing QUICKLY

HUD Section 8 has housing dedicated to people who are elderly or disabled. You can apply even if you are young. Quality varies, but some readers here have found housing that is safe, clean, nice, quiet, disability accessible and super affordable this way: How to Find Yourself a Nice, Affordable HUD Apartment (for People with Disabilities)

If you are already in subsidized housing, or you are in the process of applying, check out these: Extra Special Benefits for People with Disabilities. For Section 8, USDA, and some other forms of income-based housing.


If you have Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, here’s a few tools and services that might really help you out: How To Save Spoons


Every so often you will receive a medical review to determine if you are still disabled. How to Be Prepared for a Continuing Disability Review

You may be wondering: When Is My Next Social Security Disability Review?

The Social Security regulations are designed so that it is much easier for a person to pass a disability review than it is to get approved in the first place. However, if you are still disabled, it is important to continue to see a doctor and document your condition. Here’s a few Important Social Security Doctor Regs

Most reviews are approved without problem. If your run into problems: How to Appeal a Continuing Disability Review


If you don’t know the difference between SSI and SSDI, now would be a good time to learn, so the rest of this page makes sense: How to Understand the Difference Between SSI and SSDI Without Making Your Head Explode

Many people think they know if they are on SSI or SSDI, but it turns out to be wrong. Please double check, it can cause a lot of problems if you are following the wrong regs: How to Tell What You’re On

You also might be wondering: What’s the Difference Between Medicare and Medicaid?


From time to time you will be contacted for an SSI interview or PERC. How to Handle an SSI Interview

If you are on SSI, please please please learn all the SSI regs you need to know. It will save you a world of heartache down the road.

You especially need to know this rule: How Much Rent to Pay on SSI

It is totally possible to survive on SSI. Not easy, but possible. A lot of super important info here: How to Survive on SSI

See all these other folks who did it! “How I Get By On SSI”

If you first became disabled before the age of 22, learn more about Adult Disabled Child Benefits


If you are on SSDI, hopefully you have already done this, but just in case…. You can collect extra benefits for your kids (including kids who don’t live with you) and sometimes for the parents of your kids. Please make sure to sign your kids up. Some people lose many thousands of dollars this way.

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

If you are on Medicare, you may have a waiting period before the Medicare starts. During this time period, you might be eligible for Medicaid. If that doesn’t work, check out: How to Get to the Doctor When You Can’t Get to the Doctor and How To Be Broke & Medicated

Once your Medicare starts, you may be charged a lot of co-pays for medical visits, plus your disability check will be lowered by about $100 per month to pay Medicare premiums. Don’t worry, you have options. How to Escape Medicare Fees


Make sure to request and keep copies of all your own medical records. You want full medical records with treatment notes (not what appears online). Doctor’s offices will not keep your records forever and sometimes a practice can move or close or purge old files. Some people lose their records this way. How to Collect Your Records

Ask your doctor her plans for retirement or relocation. This will give you time to plan ahead so you can find a good new doctor and don’t have a gap in treatment (Social Security will look to see that you are in regular treatment).

If you move, it is super important to give Social Security your new address and confirm that it is updated in their system. If you come up for disability review and the paperwork is sent to the wrong address, you could get cut off and it may take months to get your check started again.

If you discover problems in your records: How Do I Fix Problems in My Medical Records?


If you have complex medical needs not covered by Medicaid, sometimes there is a way to continue coverage under your parent’s health insurance, even when you are an adult.

Research your insurance policy to see what is possible. Here are two examples from Texas: Sample application for extended health insurance and article on extended health insurance


Sometimes Social Security accidentally gives someone too much money. Then they want some back! This is called overpayment. How To Respond When Social Security Tells You That You Owe Money Back

Also check out: How Do I Prove that a Social Security Overpayment was Not My Fault?


If you ever run into a problem with your benefits, always appeal. Appealing is always better than starting a new application. If you are still disabled, you should be able to get this sorted out if you are willing to be patient and persistent. There are at least two appeals you can do: the first time is called “reconsideration hearing” and the second is called “appeal hearing”. The biggest mistake people make is not appealing. Always appeal and keep appealing

If you believe that Social Security or any other government agency is not correctly following a policy, please contact your congressperson.

As you probably have already figured out: Social Security sometimes says weird things on the phone. If you call Social Security and they tell you something that does not sound right, that may be because it is not right. Double check.

Here’s a few sentences you can say that sometimes magically turn a “no” into a “yes” What to Say When Someone Tells You “No” or “Not Possible” or “You Don’t Qualify”

If you have a problem with your disability reviews: How to Appeal a Continuing Disability Review

If you run into some other kind of problem: How to Solve Your Social Security Problems

If you are on SSI and have too many resources: How to Handle If You Are Over the SSI Resource Limit

Ideas from readers on How to Have a Good, Helpful, Pleasant, Reasonably Successful Phone Call With a Social Service Agency

Whatever happens, always remember the golden rule: Never Take No for an Answer Over the Phone

If you have a Social Security question you cannot get a good answer to, post it below, or check out: How to Escape the Information Black Hole

The National MS Society has an excellent booklet about legal rights for people with disabilities: Know Your Rights.


If you are considering moving to another state, check out this great article by Alison Hayes How will moving affect my disability benefits?

Many people who are homebound or have difficulty leaving the house, find support online. Here’s a list of 26 Great Facebook Groups (Plus a Few Other Things)

Facebook groups for people with chronic illness and disabilities looking to find roommates or improve their housing scene. Plus resources for chemical sensitivities: Housing for Spoonies

You don’t have to leave your bed to be a great activist: How to #Resist Without Using All Your Spoons.

Adapt is an amazing group of people with disabilities who organize for social change.

While you are here, why not check out our fantastic Spoonie video festival, where you can immeasurably improve your life just by watching. The Sleepy Girl ME Video Festival

If you are looking to make a big and interesting change in your life, learn more about How to Join an Intentional Community. Also take a look at Cooperative Living on a Disability Income

Some people choose not to tell others that they are on disability, unless it is someone that they know well and really trust. Many people also choose to be careful with what they post on facebook, twitter and social media. This is a personal decision. Do what you feel is best.

When you are disabled or homebound, the people in your house matter a LOT. Sometimes those are the only people you see! Here’s How to Find Wonderful Housemates & Caregivers

Many movie theaters, parks, and recreational programs will allow a disability caregiver to accompany you for free. In many cases, all you have to do is ask.

Brilliant tips for getting out and about: Sunflower Goes to a Concert, a Theater, and a Football Game and Sunflower Goes on a Trip


Many people with chronic illnesses start online fundraising to help pay medical or life expenses. Ironically, this can cause you to lose your Medicaid, Food Stamps, SSI, Medicare Savings Programs, utilities assistance, or subsidized housing. In some cases, there are safe ways to fundraise. Please take a look: How to Fundraise Without Losing Your Benefits


Try to remember these two things in case they ever happen to you:

If your spouse (or ex-spouse) dies, you are eligible for Widow’s benefits at age 50. Usually it is age 60. But you get them early! Contact SSA and request this.

If you were first disabled before the age of 22 (no matter what age you are now), when one of your parents dies, retires or becomes disabled, you may become eligible for Adult Disabled Child Benefits. Contact SSA and request this.

If you have children at any point, makes sure to sign them up for dependent’s benefits. (SSDI only). Dependent benefits (including kids who don’t live with you)


Many people with disabilities find it helpful to have an assistance animal. There are two kinds of assistance animals: service animals and emotional support animals. Service animals are trained and emotional support animals are not trained. Service animals are legally allowed to go places where a support animal may not be allowed. Assistance animals are considered “medical expenses” by some agencies. For example, in some housing programs having an assistance animal will cause your rent to go down. Learn more: Rosemary Guide to Emotional Support Animals


More stuff you may or may not what to know:

Tell Us More

Got good ideas to add to this list? Please comment below. Also: Please let us know if any links stop working.

64 thoughts on “Everything No One Ever Tells You About Living on Social Security Disability”

  1. I am almost 56. I am disabled and have limited function. I get SSDI and Medicaid insurance but I am
    overwhelmed with debt. My son used to help me monthly and he can no longer do that. I was offered parttime work at the library for 8 hours a week. I used to work there years back. I called SSA to ask them how this would effect me if i tried it. She said I had to do ticket to work and after I start i will be called in for review at 90 days and then 6 months. I tried to expain the only reason im doing this is I cant live on what it get and I cant work enough to
    be independant. It was very discouraging. I feel like the suffering just never seems to end for people like us.


  2. Thanks for the tip to get a disability parking placard or anything related to that if you have an invisible illness that affects walking. People will judge you no matter what. Might as well be comfortable instead of risk hurting yourself in order to not look bad.


  3. Hi,
    My 20-year-old son receives SSI, we live in CA. He lives with me in my apartment (I rent). My question is… I want to add my son to my health benefits, (health/dental) Medical doesn’t seem to cover most of his medical and dental expenses or therapeutic services. Will adding him to my health benefits affect his SSI benefits?

    * I looked for information on extending health insurance, but can’t seem to find info on the SSI website.

    Thanks in advance!


    1. To my knowledge, this wouldn’t impact his SSI.

      If you are getting subsidized insurance through healthcare marketplace, they won’t allow you to add him.

      If it’s private insurance through your employer, they might allow an adult disabled child to be added, even once he gets too old to qualify, but there may be some hoops to jump through.

      SSI will be impacted if he doesn’t pay proper share of rent though. Hope this helps.


  4. Thanks for all the information, I am 53 and was married for 25yrs so being on disability since I was 33 didn’t bother me financially. On my 50th birthday he said he wanted a divorce so I went from a middle income wife and mother to a woman living below the poverty level. I had to live in awful motels and I can’t rent a apartment because I don’t make enough money. I get $1129 a month they didn’t raise it after the divorce I don’t even have a car since then because my credit is bad because he quit paying my bills. I haven’t been able to go anywhere in 3 yrs. I am on list for section 8 but it’s been 2yrs. I have heart problems and I can’t go exercise or go for a drive. I feel like I’m going to die like this and I still have so much more to do. Thanks for listening


  5. Imagine how much money the SSA would save if they didn’t pay people, plus their bosses, benefits, rent, health care, training, computers and internet, etc. if they didn’t have “Sales people” trying to sell you on Ticket to Work.
    I fought them 8 years. Within 2 weeks of finally succeeding, they started calling me. The amount of frustration about this, immeasurable.
    I spoke to them once, 3 years ago, luckily they have not ever called me again.


  6. Thankyou. I have been in bed for 2 years. I haven’t been able to find mental healthcare that will take my insurance, as I live in a rural area. I may have to have knee surgery. I have been trying for over 2 years to find mental healthcare, but it has been like banging my head against a wall. Thankyou very much. This is a great blog and very informative.


  7. Hi Sleepy Girl,
    I have been on SSDI since 1997. I was awarded it in my home state. I live out of state now. I had 2 mail in reviews between 1997 and 2017. No problem. In 2017, I went through the big review. I had to see their Dr. and their psychiatrist. Medical records, the whole 9 yards. I was approved.
    It has been less than 2 years and they are reviewing me again. I don’t understand why. I am very upset and feel like I am being harrassed. I have a serious mental illness. I also have health and physical limitations.
    I was planning on going back home for good in 2 months. Now I don’t know what to do. I am 56/female.
    I have a psychotic brother who lives in a 3rd state. He has a job, etc. He is very vengeful and has threatened to find a way to get me kicked off. And he will lie thru his teeth if it will get me kicked off. We had an argument 3 months ago. Now I am being reviewed.
    What do I do if he has told them lies to get me kicked off? And if he hasn’t, why am I being reviewed 16 months after the last one?

    Liked by 1 person

    1. As long as your medical records are clear about your symptoms and disability, anything your brother says that is untrue shouldn’t matter.

      Many people are reviewed every few years. I don’t know why your reviews have been unevenly spaced, but this happens to many people, often for no particular reason.

      If you move during your review, this is fine as long as you keep up regular medical treatment with doctors who are documenting your symptoms and limitations.

      Hope this helps.


  8. Hello Sleepy Girl..

    I am having a huge issue here and just want some help regarding housing voucher or any help at all. I was approved for both (concurrent ssdi and ssi) back in February,the place where i was residing the landlord sold the house of dead beat idiots tenants who can’t pay the rent. Back then he gave every one a 30 day notice to leave.I tried to find a place on craigslist but that was one of the worse idea and came up with nothing. So i had get a broker and paid $125 for him to search for a particular room i wanted which was a private house.Fast forward he was able to finally find me a room after 2 months and i moved in on June 1st .Upon moving to this place it seems ok at first the landlord don’t speak much english and he lives above me with his wife and kids.The room i got in this house also has 2 other people. One which is a taxi driver and hardly is here and another young gentleman which is roughly my age (30-32yrs hispanic) who is home occasionally because what ever job he does don’t give him full 40 hours..This is where the issue starts, now i never really had any issues with this guy until maybe 2 months later when a mice start popping up in the kitchen. He is the worse person i can say iv’e lived with so far. He don’t clean sh!t, just play video games all day. He leaves food discard in the sink,trash can piled to the top,NEVER seen that clown picked up a mop and bucket and cleaned this apartment.Mainly every night i have to take out the trash and clean the apartment.Stuff like that boiled my blood because i was not raised like that and it really bothers me to see these stuff.When his nasty girlfriend comes over also who is a filthy mess,every time she takes a shower and washes her hair, she is that lazy to picks up the hair that is clogging up the bathtub drain .Eventually we bumped heads one night when i confronted him he is a filthy person and don’t clean.He got extremely upset came up in my face like he wanted to fight me cursing here and there,he called the land lord yelling to him on the phone,who was talking to him in spanish and i don’t understand. I am African American ..I told the land lord he doesn’t clean plain and simple.Right then he still in my face about to fight me and i told him if he touched me i will call the police because i was not about to fight him and also being disabled.Let me get to my point .I need to know how i can get the hell out of here, but i rather get a place through the government. I am only getting $750 a month and living in NYC with that is like pocket change for finding a nice room, so i don’t have extra money to go through another broker. Is there a program like housing voucher or anything at all that i can get as an dire situation to leave this place. I feel unsafe here and i just want to leave. I don’t need to be living with this filthy maniac.I ask the land lord for glue traps for the mice, this idiots moves and sometimes throw away the traps when i places them all over the kitchen in spots and at night the counter top. For what reason i don’t know, and then i get really angry because of him doing it when his dumb a$$ see the mice issues we are having .Mice on the counter all hours of the night.I am scared to leave food in the kitchen period.Please help me. My dream to move to Arizona is just not happening as yet , that is where i want to live and get out of NYC…So please i am begging you what is my choices and how can i move forward with this situation to get a place..I just don’t want to get help from outsiders and that will reduce my benefits at all.I know it will not have an affect through the government giving me a home.


    1. I’m sorry that I do not know any immediate housing solutions. Most section 8 programs and voucher programs have a waiting list, so you could get on a waiting list to move into a better situation in the future.

      To be honest I do not know how long the waiting list might be in New York City, that might be a very difficult place to find housing. If you look elsewhere in New York State you can probably find some open waiting list.

      I also have seen that there are many open ones in Arizona that are about one or two years wait.

      There’s a Facebook group called HUD section 8 and public housing disabled residents where people have posted some open In Arizona recently.

      This page also has information on how to apply for section 8 and how to find open waiting lists: https://howtogeton.wordpress.com/2017/05/29/how-to-learn-everything-you-ever-wanted-to-know-about-section-8/


  9. First can I just say THANK YOU SO MUCH for making this website. This is the best website ever and it is the website I wish I had found before I started all of this, but I found it now and that’s what’s important!!! I am going to share it far and wide.

    I’m sorry to jump on the “Let’s treat this person like an expert who is here to give us all individualized advice” wagon, and if you can’t answer my question I completely understand.

    I live in NYC. I received a letter from HRA saying my benefits (SNAP, Cash Assistance, and Medicaid, even my 9 y/o son’s!) would be discontinued because of the $788 in SSDI I’m receiving per month. I’ve requested a Fair Hearing which will take place on Halloween. Do you know if can be correct? If this usually happens? No one told me anything, not my care manager, social worker, no one. I feel like if I get SSDI but then have ALL of our Public Assistance taken away, I’m behind where I first started, it will end up costing me MORE than what I’m getting.


    1. Thanks for the lovely letter amanda. Feel free to send us a pm on our facebook page.

      For medicaid – The form of medicaid you were on will end, but there may be other forms of medicaid you are eligible for. They might enroll you automatically, or you may need to sign up. Do you know if you are receiving SSI or SSDI?

      Yes, the cash assistance will probably stop and also (sorry to say this) but they may take back the amount you were given out of your backpay.

      For SNAP, it depends on how much income is coming into your household (including child support, etc). It will also depend how much rent you pay. Also, now that you have been declared disabled, make sure your caseworker knows this and applies the disability rules to your case. Hope this helps 💕 https://howtogeton.wordpress.com/2017/01/26/how-to-get-enough-food-stamps-to-actually-eat/

      Liked by 1 person

  10. I’ve been involved with a gentlemen who is on SSI for many years. I’ve recently moved to a new area and he’s come with me. There are many days he’s unable to handle day to day activities such as laundry, cleaning, etc. He’s been on SSI for quite a while. After many years of handling his finances I’m now being asked to be his “Rep Payee” not realizing I had to be a rep payee prior. I’m currently renting an apt. until I can find a house and am trying not to get into any trouble with him being with me. We have to go to the SS ofc to put in this payee paperwork and I’m worried that I will get into some trouble.


  11. I have a question that I can’t find the answer to, can you help? I get SSA disability but I didn’t put a lot in so I don’t qualify for my kids to get a check. I only get $730 & $120 comes out for insurance preminium & $275 comes out of that for a child support court order leaving me w/a little over $300 month to live off of!. Can I get SSI disability also & then Child Support wouldn’t be taken out? How do I do that? Shouldn’t I also be able to get Medicad I have Medicare. I really found a lot of useful information on this website and thankful you made it!


    1. Hello,

      Yes from what you have written above it looks to me like he would be eligible for SSI, unless you have another source of income you haven’t mentioned, or if you have assets such as money in the bank that might make you ineligible.

      I don’t know your full financial situation, but you may be able to apply for Medicaid now as well.

      Most people who are on both SSDI and SSI receive $770 per month plus Medicaid and Medicare. The amount is higher in some states hope this helps.



  12. I have been on ssdi since 2007. I’ve had 5 cervical spinal fusions with complications. I’m having extreme trouble doing household chores. (Cleaning, vacuuming, etc.) is there any help for this type of thing? I can take care of myself, with my husbands help. We’re 64 and 65.


  13. In 2010 to 2013 I received ssdi 3 surgeries for herniated disc after a work related injury. After a hearing in front of judge. In 2013 I went back to the same job, I informed ssdi and no longer received payments. In 2015 I went back out due same injury and had a spinal cord stimulator implanted. I also was diagnosed with ptsd because of the original incident. My lawyer applied me for once again ssdi. And have a hearing coming up in front of a different judge. My employer has since retired me on injury ( ny state disability retirement ) my question is does it help my case that I once had ssdi and tried to go back to work?


    1. Hi Tap,

      I’m not aware of any way that this would make a difference – according to the SSA policies.

      Of course, you never know what happens in the mind of a judge, it could increase your credibility in the judge’s mind.

      If you are able to collect all your documents from your state disability retirement (any doctor’s letters or medical forms), and submit that to SSA, that could certain help.

      I hope it goes great for you. ❤


    2. Are there any specific federal programs (or even bank sponsored) for people receiving regular disability payments who want to purchase a home? Are govt benefits considered income? What about employment requirements??


  14. I just got my fully favourable decision letter on 4/12/18. My onset date is taking me back to when I first filed for disability which was 2/22/2013 was the first time I was turned down. After the 1st time I refiled again on 9/15/2015 which has lead to this fully favourable decision and an onset date all the way back to 6/22/2013. I have not worked since 2/2013 and I was wondering how they will work those work credits so that I will draw. If you could explain this I believe I might be able to stop getting so sick because I am awaiting my award letter (which needs to hurry) but in the mean time i been checking the online My SSA Account and it is stating that I do not have enough work credits…. Any insight on your thought might help me sleep at night until i get this award letter.


    1. Hi Shannon, If your decision letter says the onset date is 2013, that should be correct 🙂

      From what you wrote, I am not sure if the onset date is before or after your first denial. If it’s before it means the person making the decision decided to reopen your old case – that would mean a lot of backpay.

      My understanding is: It does not matter if you have enough work credits now, just if you had enough at the time of your onset date. If you feel unsure if you had enough credits at that time, you can call Social Security and ask “when is my date last insured?” If you were insured at the time of your onset date, you should be eligible.

      Congrats. Hope this helps.


  15. Will I get SSI back pay for the months that I was going through the process when I didn’t have any income coming in ?

    Any ideal what the max SSDI payment is ?


    1. I believe it is around $2,600.

      In most cases if your SSDI is too high, you will not get SSI backpay, but there is a loophole where sometimes someone gets SSI backpay for five months. It depends when social security sets your onset date so it’s not possible to know ahead of time.


  16. Would you happen to know the starting amount of too high SSDI that would eliminate SSI ?

    Does SSDI truly have a max monthly payment regardless of the amount of salary I earned on average prior to becoming disabled?

    Example: if Joe yearly salary average was $105,000 per year for 20 years prior to becoming disabled, will his max SSDI payment only be $2,665 per month? (which the $2,665 is the state of Tennesse max from what I have read but not verified)

    Thank You !


    1. Hi tony,

      Yes, there is a max benefit for SSDI.

      The cutoff for SSI depends what kind of income and if there is other income in the household. As a general rule, in most states, if SSDI is over $750, the person can’t get SSI.

      It is $900 in California.


  17. Right now I live with someone and pay my share of everything. My half of rent is $400. I’m on a waitlist for subsidized housing. From the information I’m finding online, it looks like when I move into subsidized housing (my rent will be 30% of my income- $225), that I will lose my SNAP benefits because my rent will be less. Is this true?


    1. Hi Deb,

      This sounds correct to me. When your rent goes down, your SNAP goes down.

      You might not lose it completely, but it might go down some (you will still come out ahead) 🙂

      There are some special regulations that may make your rent lower and your snap higher:

      food: https://howtogeton.wordpress.com/2017/01/26/how-to-get-enough-food-stamps-to-actually-eat/



      1. Thanks for the reply. Unfortunately you confirmed what I figured as far as snap benefits going down. Another unfortunate is that when I move, I’ll have 2 more bills every month that I don’t have now. And if I’ve lost my snap, the money I’d have used for those bills will now have to go for food. ☹️


  18. I was approved last April. My disability benefit date stars 4/15. I’m on medicare but denied benefits because they thought I was still getting workcomp. I sent the form back last June proving I haven’t been getting workcomp. It’s been 8 months without benefits. How long do they take to straighten stuff out ? Ugh !


  19. What if you were approved for SSI, and SSD at the same time, then told you weren’t eligible for SSI. Are they required to still pay the SSI approval retroactive, regardless of being disapproved after the fact?


        1. If your SSDI payment is too high….

          Then any backpay month where you get both SSI and SSDI, you won’t get to keep both. They will subtract the SSI amount before sending you the final check. (If you’ve already gotten the final check, you should be able to keep it unless a mistake was made).

          If there are any months where you qualified for ONLY SSI, then you get to keep the SSI.


  20. I have been blind for my adolescent years but my onset date was when I was 20 years old. I was approved for SSI and have been getting SSI ever cents. My mother went on disability for years later after I was a pro diversify. I was not told nor was I move towards the disability adult child benefit. Am I still eligible for the last 13 years?


    1. Hi Richard,

      I was not sure from your question… are you still on SSI now?

      If you are, then definitely YES. It will depend on your mom’s income, but it is possible you could get a higher check, plus a big backpay check 🙂


  21. He is on ssdi who do I call that can answer questions. Particularly medical insurance. His current part d. Will stop covering his meds in Jan.?


  22. after 9 years I still have no diagnosis which would enable some sort of disability.. this seems the first step, and I hear 90% of us are undiagnosed like myself. I just was denied the NIH clinical trial for same reason, no concrete diagnosis.. I am now seeking ME docs in CO if anyone knows any.. medicaid doc would be great.. or anyone.


    1. ME specialists are few and far between.

      If you feel you have ME, you could try bringing info on ME to your regular doc and ask them to review it with you. Some people are diagnosed that way 🙂

      Also, it may be helpful to try checking all your medical records from every doctor you have been to. You may discover they have written down some diagnostic codes you are not aware of.


    2. Locate this doctor Henderson. He is in Colorado.The publication I cite below was very interesting though only abstract available on pubmed — about youngsters diagnosed for depression who actually had ME/”cfs” and were helped with anti-viral medicine. He should know of others in Colorado such as doctors treating the disease.

      Valacyclovir treatment of chronic fatigue in adolescents.
      Henderson TA.
      Adv Mind Body Med. 2014 Winter;28(1):4-14.
      PMID: 24445302
      Similar articles

      Another paper of his done in 2015, about brain radiology, showed him at the address below. Good luck.
      3The Synaptic Space, Centennial, CO, USA


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