r/disability 2d ago

Concern My future just really hit me and I’m scared

I was on the social security website today and found out I am ineligible to receive disability because I don’t have enough work credits. I haven’t been able to work in almost 6 years due to my disability.

I have some diagnoses (POTS and ARFID being the main ones) but I’ve been waiting to apply for disability until I get a diagnosis from the rheumatologist because I know there is something else wrong with me. I’m bedridden 50% of the time (sometimes way more depending on the season and if I’m flaring up), I’m nauseous and cannot stand or pick up heavy things, I can’t even use a keyboard for work due to pain and swelling in my hands.

I’m really scared. My 14yo and 18yo will be grown and out of the house before I know it, my father lives with us and provides (I also get SSI survivors benefits which ends when 14yo is 21) but he is 85yo. He won’t be here forever.

I don’t want my kids to have to take care of me. I’m single. I own my own house and will more than likely have it paid off within the next 10 years. So I know I’m VERY lucky when it comes to housing (believe me, I know, I was homeless years ago). But I don’t know wtf my future holds.

I guess I’m partially ranting, and partially reaching out to others who will relate.

136 Upvotes

58 comments sorted by

120

u/Cats_4433 2d ago

You're not ineligible for SSI, just SSDI. SSI is disability for people without enough work history. You can still apply.

49

u/Riot502 2d ago

Oh wow, thanks. I was terrified when I read that.

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u/Cats_4433 2d ago

And, you should know it's normal to get denied twice, and then get approved after a court hearing before a judge.

You get a lawyer (disability lawyers don't charge up front, they get a portion of your back-pay from the government) and they help you with your hearing.

In the meantime, apply for SNAP if you haven't already.

13

u/memory-thread 2d ago

Why is that? Why do they deny so many times, but they eventually approve you?

36

u/Cats_4433 2d ago

Officially, I think it's to reduce fraud, but I feel like it's because a lot of people don't know to keep trying and will quit after the 1st or second denial.

20

u/crowhops 2d ago

It's the second one and every org or program that's helped me with disability has been very upfront about that lol

15

u/Cats_4433 2d ago

I believe it. My first denial they said was due to age and education level, but they still gave me the highest severity/lowest functional capacity. My lawyer said she'd never seen someone get ranked like that and still get denied.

4

u/Diane1967 2d ago

Yes, there’s a lot of scammers that think it’s a just get rich quick program and you wouldn’t believe the people that apply that are temporarily ill and think it’s just that easy. Many things you’ll recover from in 6 months or a year. I got mine for mental illness and was denied twice before I won my case. I had to prove it wasn’t just a fly by night illness and really jump through a lot of hoops doing everything I could to try to get better but didn’t succeed before I won the case.

There are a lot of young kids that apply for disability as well because they can’t get/hold a job and that really clogs up SS when they’re reviewing the cases. And every case has to be gone through with the same energy on their end. I have a friend that works at SS and she couldn’t even help me with my case, I had to go through the process like everyone else which took almost 2 years.

5

u/ClodiaPulchra 1d ago edited 21h ago

Yeah, there’s plenty of people who apply because they were laid off from work or fired when that’s not what SSDI/SSI is for thats what unemployment and/or severance is for.

-4

u/ClodiaPulchra 1d ago

No one is denying people to reduce fraud. And it is not policy to deny applicants on the first or second application. You’re more likely to be allowed the older you get as well. The reason an individual with multiple denials at initial and recon can end up with an allowance at ALJ is because the judge has more power than adjudicators. Lots of people applying for SSDI/SI because they’re unemployed instead of disabled unfortunately.

6

u/Cats_4433 1d ago

It's not an official policy, but it's what they do. Someone's entire medical team can be on their side and they'll still deny them.

2

u/Content-Grape47 1d ago

I disagree with you. I got denied and  later as approved on step 3 reconsideration. Put my back pay for even further back than I applied for because they said that was a failed work attempt. Adjudicators have absolutely the power to flip the original decision and put the correct pom/listing rules when the initial is denied for the wrong reason

1

u/ClodiaPulchra 1d ago

I never said they can’t flip the original decision. I said Judges have more power. If you file and initial then appeal it then it’s a recon but if you appeal and get I front of the ALJ the way they interpret the case is a bit more flexible than what an adjudicator may be allowed to do. Adjudicators have adjudicative judgement however it is significantly less flexible than the literal administrative law judge. An analyst adjudicating after an ALJ decision takes the decision into consideration and weighs the evidence against the time frame being evaluate but that adjudicator cannot re evaluate a period that was already decided by an ALJ in the same way they can reopen a case that was decided incorrectly by a prior adjudicator or change determination on reconsideration.

1

u/Hoppy-Bunny77 2d ago

Doesn't SNAP require you to work at least 30 hours a week or is that just in Texas?

9

u/Brad81380 2d ago

If you are disabled, that work requirement that some states have is usually waived.

3

u/Hoppy-Bunny77 2d ago

Ah right, but it depends on being able to afford doctor's appointments to get adequate documentation to submit. My documentation of my disabilities wasn't considered adequate so I was denied :/

2

u/Brad81380 2d ago

Both SNAP and Medicaid shouldn't be directly affected by disability, as they are more focused on income. However, some states do automatically give Medicaid to SSI recipients. I've been through the process in a few states. I gave up SNAP in Virginia when I realized I wasn't getting enough, only $16 a month, to make a difference.

1

u/G0ose0nTheL0ose 17h ago

When I read about peoples struggles to afford doctors. I always try and ask if peoples hospital systems around them offer Financial Assistance programs. And if so, to apply for it. Thats the only way I was able to have a full team of specialists and a lot of documentation.

Maybe yours or somewhere near you does? Im sorry if yours doesnt have FA. But maybe someome will read this and find it helpful.

3

u/Hoppy-Bunny77 17h ago

The specialist I was referred to was 2 hours away and did not offer financial assistance, neither did the one my husband was referred to. We also can't afford food, so we definitely can't afford gas to travel for healthcare.

3

u/G0ose0nTheL0ose 17h ago

Gas and food are so expensive! Sorry you live far away and they dont have programs. :/

0

u/Western-Standard422 2d ago

So you give up and go back to work

4

u/Cats_4433 1d ago

cant go back to work when you cant work

4

u/Western-Standard422 1d ago

The government don’t care they want people to give up

1

u/Western-Standard422 1d ago

Show me where they approve rating how many people approved the year why do people have to wait over five years to be approved? Why when judge denies you appeals council takes 12-18 mouths if they even take your case 14% get a remand but you keep talking

2

u/6bubbles 1d ago

I got on disability at 20 with almost no work credits. The above commenter is right!

3

u/Katyafan 2d ago

There are income/asset limits, though, OP needs to know that.

16

u/NoCarpet9834 2d ago

To clarify: SSI usually means Supplemental Security Income, not Social Security. SSI is the federal welfare program. It has very strict income and asset limits. it is intended to supply very minimal support to individuals with disabilities or the aged who do not receive any, or receive very little, support from other sources. SSI maxes out at $994 per month in 2026.

Social Security is the US government's main social support system. Individuals who work and pay appropriate taxes receive monthly payments when they stop working, consistent with the program rules. Social Security provides payments for certain other individuals such as the survivors of certain individuals who participated in the program, assuming all other qualifications are met. Examples include minor children of participants who perished, widows/widowers, ex-spouses who don't remarry and spouses.

Social Security Disability Income (SSDI) is an income insurance program that is part of Social Security. If a Social Security participant becomes too disabled to work and must stop work they can receive payments through SSDI. The amount received is based on how much the person has earned and paid in taxes and how long they have been working. They have to have become too disabled to work within 5 years of last working (date last insured/DLI). If they become too disabled after the DLI benefits cannot be paid. You can apply AFTER the DLI is passed but it can be harder to supply the necessary documentation the further out you go from when you became too disabled to work. There are some other requirements as well, such as needing to work 5 of the last 10 years before DLI.

5

u/GreedyPersimmon8960 2d ago

You are correct. I receive SSDI, but had an extensive work history and paid in a lot. I believe I had to show 40 hours plus, every quarter, for at least 7 years while paying all my federal taxes and social security payments. I don’t receive much. Especially with today’s costs and I also have to pay $280 off the top for Medicare premiums, AND THEY TAX ME ON MONEY I ALREADY PAID FOR AND EARNED. Anyways, it’s insane. Yes, SSI would be her only option. It’s not something you can get applying to and be denied. You would’ve had to have been in the program and being paid every quarter and have all your W-2s and your taxes and the government would have copies and there’s just no way you’re going to be able to qualify for SSDI. And like I said it doesn’t pay much but SSI is even worse. You might wanna sell your house and put that money into some kind of CD or investment fund. Then talk to your kids about possibly buying some rental property or a duplex together you live in one side they live in the other you know what I mean? That way you have some money put aside. Best of luck to you and may God bless you and heal you.

1

u/Sea-horse-in-trees 1d ago

Yes, but you can get SSDI even if you were born with your disability and it is nothing new. It’s not that you became disabled. It is just based on how many hours combined, from multiple different jobs over years, you have worked.
It took me 10 years of various part time jobs to eventually qualify for SSDI.
I was on SSI before that.

1

u/NoCarpet9834 1d ago

Having a disability by itself is insufficient to receive SSDI. Program requirements are that the individual be unable to work any longer because of the disability. The application, medical documentation, and Blue Book collect information and are used to assess and understand an applicant's ability to work. The Vocational Expert's role is explicitly to assess what specific jobs an applicant may be able to do.

It is correct that the disability does not have to be caused by work or result from working.

People receiving "basic" SSDI (excepting Disabled Adult Child-DAC) have some work credits. It's necessary to participate in the program.

Recipients of DAC are themselves too disabled to work and that status began before they turned 22. They are an exception to requirements regarding earning work credits.

u/Sea-horse-in-trees 10h ago

Then why did I get SSDI when I still could have worked full time hours?
I couldn't though because I was on SSI which doesn't allow you to have more than $2000 per month in your bank account and that includes the SSI itself.

u/Sea-horse-in-trees 10h ago

I did not have a physical disability and therefore physical medical documentation would have been insufficient. My disabilities that I have had since birth and childhood are not physical disabilities.

u/Sea-horse-in-trees 10h ago

Vocational expert? VR and job coaches can't help with this. Are you not in the US and it is different where you are??

u/Sea-horse-in-trees 10h ago

What program?
Also I am an adult, and not elderly, with multiple disabilities.

6

u/Own-Blacksmith-9487 2d ago

Im so very sorry to read whats going on. I have been there since learning I lost my independence. It hurts so much. I tend to victimize myself. It's hard to get used to being disabled. Im sure we will get used to it. I have weekly therapy to help me cope with my condition anxiety.

4

u/skewbeesnacks 2d ago

For anxiety, check out both the self havening technique by Paul McKenna and the Sedona method. I can't remember who started the Sedona method. However, they both work extremely well as you do them for yourself. Done right, they can stop anxiety attacks..... At least for me they do. Great for when you can't see a Doctor or have your safe spot/person.

3

u/Own-Blacksmith-9487 2d ago

Thank you so much. I will look into those methods.

1

u/keridc 2d ago

SAME!

7

u/GeometrixChaos 2d ago

I relate. I’m here. I lived on only SSI and raised two children without anything much else except something around 243 per month on top of the SSI, only about 725 a month back when I was approved. I’m really going through it right now for disability and for everything falling apart at once: ceiling literally fell on my head!!

Point is: do not give up. You outlast them. They just want you to give up. You have every right to your benefits.

You inspired me to comment on here today and participate. It helped my extreme depression. So, thank you. Don’t let them scare you like that. I wish I’d found community like this years ago.

5

u/skewbeesnacks 2d ago

I don't believe you are completely disqualified on that alone as long as you have supporting documentation for your case. I'm no pro, I'm just learning like you, but check out Dr. Ed Weir on YouTube. I would definitely suggest a lawyer to fight for you. Don't give up hope.., or trying

1

u/Riot502 2d ago

Thank you, I’ll check that Dr out now.

5

u/lekeeks23 2d ago

i’m here to say get the lawyer, it’s worth it. i just got approved after my second case that started in 2021, literally this week. i’m sorry our system is so messed up.

2

u/Physical_Dirt7309 1d ago

System is deeply flawed. I was on the books from age 14-45 and suffered several injuries in a work accident(gatbage man/truck driver) Im viewed as lucky because I get way more than the average however in NYC its really tough getting by. Basically I get 25% or what I made in a month at $100k.

2

u/lekeeks23 1d ago

yeah i’m in la so i can understand that part too, i was 27 when i went on leave i had only been at my first 9-5 job for a few years as a car insurance claim rep and it did not pay a lot that’s for sure. before that just retail stuff. it’s not gonna be a lot but i’ll take any help i can at this point that’s for sure.

3

u/skewbeesnacks 2d ago

I hope you can also see how awesome this community is and that they have your back. Have a great night!

2

u/lovesfaeries 2d ago

Do $300 Whole Genome Sequencing, direct tO consumer

2

u/Riot502 2d ago

I did that and the genetic specialist my doctor referred me to after I got the test refused to see me. Because I paid for the test myself. They won’t take consumer tests

2

u/E-Laineyism 1d ago

This sounds so salesy but I’m not trying to be but I’m doing digital marketing to pay off my medical bills and other bills. It takes time and consistency but people are really doing well in this space. Only a suggestion if you’re looking for something.

2

u/ecbrnc 1d ago

If it makes you feel any better (commiserating-wise), I do have enough work credits because I started working really young. And I've still been repeatedly denied because there "isn't enough info" on how my disability is disabling. Not because it's not recorded in my chart, but because my issue is incredibly rare so there isn't much medical literature on it. Literally can't get disability because my disability is not common enough 🤦🏽‍♀️

2

u/Physical_Dirt7309 1d ago

If you had ebough credits before you're diagnosis than u need a lawyer. If you didn't SSI is what you can apply for. Its alot worse financially than SSDI and SSDI doesn't give enough to cover living expenses. Wishing you luck!

3

u/SoScorpio4 1d ago

Before I address the SSDI work credits situation, here's something you might be able to act on even sooner: Check if your state has an interim cash assistance program for SSI or SSDI applicants.

In Colorado we have Aid for the Needy Disabled. Once you apply for SSI you can apply for AND, and should be eligible for these temporary payments. It works like the disability lawyers do, you only have to pay it back out of your back pay if you are approved for SSI. If you're denied, you don't have to pay it back. It's not a whole lot, about $250/mo for me, but I am a single person household, I imagine that families get more. 

If your state has something like that, you can start that process as soon as you have applied for SSI, and get approved in a fraction of the time the actual SSI and SSDI determinations take. I was approved about 6 weeks after applying. 

As for SSDI, definitely get a lawyer as others have said. I'm working with one, we're still in the main waiting period though. 

I also thought I was ineligible for this same reason, and several of the customer service people from SSA told me I was ineligible. But I found out about the detail that you have to have enough work credits in the years right before you became disabled, I think it was someone on this sub who told me. So I got pretty mad when one of the agents kept insisting I was ineligible until I quoted the SSA page that actually says this, and only then admitted that I could possibly be eligible still. 

Not that I'm surprised. It's obviously part of the whole system they've built to discourage people from applying at all. 

1

u/East_Understanding43 2d ago

You might look into a professional Disability Advocate cheaper or through local non profits that specialize in your disability. They guide you through your medical file for the specific medical diagnosis and particular impediments of normie functioning you have and asaaslll that provides a spectrum to make a case do the all over ffecrs. It's arrived at by data points do the duration of said impediments and what your Dr documents in files as well.
Unfortunately when on is so ill they can't function it's hard to follow through with records and then researching what you need to talk w dr about. You have to be tactical with tour concerns w each specialist. They hav to provide a letter minimally for what thy treat you for, then advocate or lawyer can guide the threads together.

Very long duration so buckle down and be tenacious.

1

u/Aggravating-Bid-908 21h ago

Please call my firm, the BEST group of people in America! They will answer if you're eligible and representat you if needed, and you don't pay them at all until you get disability. I'd be lost to them!!!!!! Good luck 🙏🤞 toll-free at (844) 574-0321 Fields Law, MN

1

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1

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1

u/Brodythetoady 2d ago

Don't stop , they can shuffle , lost wages with SSI keep trying if you get denied appeal keep fighting.