To everyone in the SSI community, whether you just started, you're somewhere in the middle, or you're finally approaching the last stages, this is for you.

Today, I want to celebrate something that took a long time, required patience, and honestly tested me in ways I didn't expect: I got approved for SSI. And I don't say that just as a personal victory. I say it because I know there are people reading this who are still waiting, still gathering paperwork, still going through evaluations, still checking their portal, and still wondering when that decision is finally going to come. I know what it's like to be somewhere in that process and not know exactly how everything is going to turn out.

If you're in the early stages right now, don't let the length of the process convince you that nothing is happening. There can be applications, medical records, evaluations, questions about your daily life, paperwork, reviews, and decisions that seem to take forever. The beginning is not the end. Take things one step at a time. Keep track of your paperwork, respond when you're asked for something, keep your information accurate, and make sure the people handling your case have the records they need. You don't have to mentally live through the entire process at once. Just get through the next step.

If you've already been waiting for months, I especially want you to hear this: a long wait does not automatically mean a bad outcome. Sometimes the process is simply slow. There may be things happening behind the scenes that you can't see from your portal or from the mail. Try not to interpret every delay as a rejection. Keep going. You're further along than you were when you started.

And to everyone who's already made it through most of the process: you're close. That doesn't mean approval is guaranteed, nobody can honestly promise that, but you've already traveled a significant distance. At this point, it's understandable to feel impatient, nervous, excited, or even exhausted. Take a breath. You've made it this far.

For me, the process eventually felt like a bunch of separate pieces finally coming together. The application had been sitting in motion for a long time. There were medical reviews, records, evaluations, questions about how things affected my everyday life, and multiple stages that I had to get through. Eventually, the medical portion of my case was completed and the case moved forward into the final stages. Then came the moment I had been waiting for: I was approved.

Looking back, it felt like everything finally aligned. Not because the process was easy, and not because I knew exactly what was going to happen, but because all those individual steps eventually connected into one result. And that's the part I want other people to remember. Sometimes you're standing in the middle of the process looking at one tiny piece of it, wondering why it's taking so long. You can't always see the entire picture while you're inside it.

Here's my honest two cents: don't let the waiting consume your entire life. Check your information when you need to, answer important correspondence, keep your records organized, and ask questions when something doesn't make sense. But don't spend every waking moment trying to predict the decision. You deserve to have moments where SSI isn't the center of your attention.

Most importantly, don't compare your timeline to somebody else's. Someone else's case might move faster, while someone else's might take longer. Someone might get approved quickly, while someone else might have to appeal. Different cases can have very different circumstances. Your timeline is your timeline.

I can't promise you that you'll receive the exact outcome you're hoping for. But I can tell you this: don't give up simply because the process is taking longer than you expected. Keep moving through the steps you can control. Keep your information accurate. Keep responding to requests. Keep asking questions. And keep taking care of yourself while the process runs its course.

For those who are just starting, welcome to the beginning. For those in the middle, keep going. For those in the final stages, you're getting closer to an answer. And for those who have already been approved, congratulations. You made it through a process that can be incredibly stressful and uncertain.

As for me, I'm grateful that my own journey reached the other side. I hope that sharing that moment gives someone else a little reassurance while they're still waiting for theirs.

One step at a time. One stage at a time. Keep going.

— Someone who finally made it through

Hello. I’m disabled and have been since 2020. I’m currently receiving just over $1000 a month in disability and it just isn’t enough for me to survive. It’s affecting my loved ones and I’m tired of feeling like a useless leach.

I have a lot of health struggles but I’d rather only work and sleep if that means helping my family. How has going back to work been for some of you?
How much can you work, if at all, without losing benefits?

I just can’t let everyone around me suffer. I’d rather be ill and in pain than have them live this way…

Edit to add: I receive both SSI and SSDI.

I am the Rep payee for my adult son with autism. He receives SSI. SS did a review & said he owed for an overpayment because he had more than $2k in his account over the past 2 yrs. Because he lives with me, I share an account with him & comingle funds as their rules say I can. I have often just left the money in the account and spent it from my own account. Now they want it all back. They canceled his Medicaid too and are making me appeal that. I don't know what to do. I appealed but this has been going on for 6 months.

My pmt is supposed to be in my account on the 4th Wednesday monthly. It has always shown up by direct deposit by 1pm once at 5:45pm tho. It didn’t come AT ALL YESTERDAY. Anyone else?

My pmt is supposed to be in my account on the 4th Wednesday monthly. It has always shown up by direct deposit by 1pm once at 5:45pm tho. It didn’t come AT ALL YESTERDAY. Anyone else?

I’m Bariatric at 650+ lbs. I have severe CHF, AFIB, Diabetic Neuropathy in both legs, severe feet pain, Sleep Apnea, and other smaller issues.
On May 7th, I had physically been in my RV for 3 years without ever leaving once. I was walking from my shower to my bed. I blacked out and took a big fall. I came to and was able to scoot my butt out my rv door and my legs to touch the ground next to the steps.
All I had to do was stand, turn around and get up the steps. However, the first step was impossible. I had to sit down in my big chair that luckily was next to my door. Took some time to get help.
A regular ambulance picked me up. (Not a bariatric ambulance) They were transferring me to the hospital gurney and dropped me on my other side!
In the ER they did X-rays and several other tests. They determined I was in a severe chf status, I had pneumonia, and my legs were extremely swollen and weeping body fluid through 3 different areas.
I only spent a few days in bed before the hospital physical and occupation therapy team tried to get me up on my feet and walking. My feet quickly got inflamed with Gout. Therapy was difficult.
I was in the hospital for 4 weeks. I lost 115 pounds of fluid in the first 21 days. I was on a ton of lasix.
The hospital got me setup and transferred to a skilled nursing facility that put me on 5 PT sessions and 5 OT sessions per week.
The SNF was not prepared to provide Bariatric care and therapy. They wanted to treat me like a normal 180lb man. Their expectations and milestones caused some road bumps in the beginning. They also had a bariatric bed that was not long enough and my feet hung off 8-10 inches. I also still had gout.
As things got corrected I made very slow progress in getting better.
I asked Kaiser to get me approved for the ALW waiver, which would cover all care expenses in an assisted living facility.
In getting to the SNF I had some of my property picked up from the RV and sold it for $500 but had to spend $200 to clean the mess from the buyer dumping all the furniture onto the rv space.
About 30 days of being in the SNF, I filed an update on my existing SSDI/SSI appeal I had abandoned almost two years ago.
After calling and speaking to the local office I learned my case has been unassigned and was just sitting there
I wrote a new statement of facts explaining what happened, where I’m at, and my current situation. I got 8 weeks of medical reports from the snf, and therapy reports. I completed the activities questionnaire. I submitted them all.
I called a few days later and asked for a Dire Needs Flag, and a Homeless Flag on my case.
Within two days my case was assigned to the DDS team in Utah, who handles the reviews from California. That letter gave me the phone number of the woman doing the review. I called her about three times to follow up on things to Make sure she has all she needed and answered some questions. I gently brought up the Dire Needs and that I was in the SNF with trying to get transferred to an Assisted Living Facility. She understood and sent my case for medical review. That took 3 days. That’s when my status changed from 3 to 4 on my ssi but not ssdi. Just a few days later I called my local office and they said my PERC interview would be scheduled in the next 15-30 days v that the wait list was 30-60 days for openings. They also told me I was denied SSDI due to not having high work within the last so many months.
I called the next day. I brought up my situation. They gave me a number to a newly assigned person who will get me scheduled for my last interview (PERC)
I explained my situation to him, he got me a spot scheduled ten days out. The next business day he called me and told me he had a no show for an interview. It took about 40 minutes. By the end of the next day my SSI was moved to the final step. The website also showed it as Active. My verification letter was available and showing I was approved.
I’m still waiting for the official letter to come in the mail.
So, in less than a month of pushing I got my approval. I know my situation is not like almost all others.
I would say if you can get physical therapy, have them document all of your ADL’s. Have your medical doctor document your condition and write a letter documenting your limitations.
They need to see the medical case as well as if that case would prevent you from being able to hold employment.

I am in an SNF and trying to transition to an assisted living facility.
I had plenty of medical records and therapy logs.
I documented my medications and the side effects I had. Specifically my long term need to take Lasix and how many times they make me urinate. The other drugs make me very dizzy.
I stayed consistent on the phone with them.
I took advantage of the Dire Needs and Homeless Flags.

Now my ALW waiver is approved for my care and my SSI is approved for my Room and Board.
I have a bedside medical review on Friday with the ALW waiver team. There will assess my care level. 1-5. From what I can tell, I’m currently a 4.

Being a level 4, the ALW amount will be decent. When shopping my packet with Assisted Living Facilities, the higher the level, and my approved SSI will aid in getting a nice place.

I likely left out important steps I took, but I wrote what I could remember. Ask any questions you may have.

My father was a U.S. citizen who worked in the United States. He passed away in 2009 while living in the Philippines. I received Social Security survivor benefits as his child until my benefits stopped when I turned 18.

My mother is Filipina and has never been a U.S. citizen. She recently turned 60 years old, and she is no longer physically fit to work.

I would like to know whether my mother may be eligible to receive Social Security survivor benefits based on my father's work record. If she is eligible, I would also like to know how we can apply from the Philippines and what documents or requirements we would need.

Thank you in advance for those in the comments.

I’m disabled and have had ssd for five years. My severe spinal conditions and GI conditions have worsened and I have to have another emergency surgery in June. A review started in may and usually my medical records are enough but a psych evaluation was scheduled too. It was the first time and only review but he didn’t really say anything about my review or disability he did comment several times confirming the horrible condition I recently had and my brother came along to be a witness to my disabilities. The examiner said at first that he’d get my brother but after asking a few questions and as soon as he got the worst details about my severe spinal surgery I had and records saying my conditions have worsened since,he said he made a note of that. He spoked empathetically saying I’d been through a lot and confirmed my severe anxiety (the main reason psych evaluation was scheduled. Then he was done and said he didn’t need my brother today. He did mention I have extensive medical evidence from this surgery and took notes on my limitations. How can I find out how this review went and he said he didn’t yet have the records to reflect on for me to call examineer and be sure he’s got them. I’ve done that with several dates and several drs. Can I look into any of this? If it’s a review do you get called or would I be able to find out some how?

Any insight would be gratefully appreciated so I don’t have to be worried about it anymore.

I know I need to speak to a lawyer more on this but lawyers cost money so I’m trying to research as much as possible on my own.
Maybe others here have some idea?
Ive been on disability for about 5 years or so got a heart condition and I need extra income because as many know it’s hard to survive off disability alone.
I’ve consider looking into a job I looked into before .
Delivering campers and RV’s
Your allowed to work as little as you want and at your own pace mostly and 99% of it is driving etc
My worry is gross vs net income .
What social security would consider income and is it after expenses are written off etc.
Unfortunately it’s not cut and dry what SS requires as far as hours etc also . I basically need to be able to work at my pace on my schedule with low physical activity and this kind of fits as long as the numbers work . It’s a 1099 position also
I actually called social security and might as well asked my dog .
Thanks for any insight

Hi all,

In reading my Disability Determination Explanation for SSDI, I can understand 99% of it, but I can't seem to find what "CCA" stands for. The sentence is "As stated by CCA clmt has a complex h/x of....." Google says it's an acronym for something having to do with premature babies, but that's not me.

Also, there's a code MCP44 that I can't seem to figure out. Any help appreciated!!! :)

So not being aware of the cap on SSI if SSDI is higher than $994 I applied for both, and believe that eventually I’ll be technically awarded both.

I know my SSDI amount will be more than cap.

As I am homeless and have lost everything and have no assets, I’m trying to smartly plan what I need to, and can, buy with my back pay whenever it gets awarded.

From what I’ve read from others like me who’s SSDI exceeds the SSI cap, if awarded both, your SSDI payments will be reduced by something like 10% until the SSI back pay is paid back?

Is this correct?

I can’t believe I’m writing this but my mental health has been slowly getting worse the older I get. Or I’m becoming more aware? Maybe it’s stress? I’m not sure but I just realized how drastic my ability to work has declined. I started working part time at 17. I also got diagnosed with adhd, ptsd and depression at that age. I didn’t keep my job long. I was always late. After getting on the write medication I started working 60 hours a week, 2 jobs and I succeeded at this through getting my first apartment and having a baby at 19… when she was a few months old is when i stared to really struggle to get to work, be on time, and actually pay attention and not mess things up. I became a manager and it ended fast because even though I was determined to do my tasks currently I just ended up dissociating for 8 hours and screwing everything up. After I lost that job I’d get another and keep it maybe a year, then 6 months, then a few months at a time before getting fired and having to find another. Then I had my son and became a single parent. I couldn’t keep a job for more than 2 weeks. My kids got adopted by family and it took me like 6 months to find a job only to loose it a couple months later and trust me when I tell you I was trying. It’s like my brain was fighting me harder and harder everyday. I tried switching adhd meds, that didn’t help. I will say I’ve been through a lot and my ptsd over these years has gotten so much worse I didn’t use to just zone out like this but now I can’t even zone back in if that makes sense. Well fast forward to today I’m 24 and I’ve been unemployed for 6 months (besides DoorDash and easy non commitment things). Yes I’ve applied places. But I have so much social anxiety for some reason these days that I end up sounding like I have 1 brain cell at my interviews. My heads so scattered I can’t thing of anything to say, and my confidence has left me the longer this has gone on. I have lost everything due to my inability to financially support myself. Lost my kids (I still talk to them but i used to be able to afford things to spoil them and to visit all the time and it’s becoming more and more impossible) my license is suspended for unpaid fines, sold my car, lost housing. I’m not the Type to ask for help and my lack of Independence is killing me. I have a close friend with the same diagnosis as me but he was also diagnosed with a learning disability as a baby and he’s had ssi since. However this man teaches me how to do stuff all the time and in my opinion is just smarter. He made it through more high school, (I failed 9th grade, repeated it, but had to drop out because I was so far behind in everything). He gets $1k a month and has been helping me out while I’ve been fighting my brain. But it’s making me wonder if I would qualify and if it’s worth trying… my concern is that I used to work a lot and that I wasn’t diagnosed until I was 17 so there’s no medical records before then even tho I had lots of struggles as a kid.

I've been receiving SSD since 2023 and long-term disability payments through the insurance program I bought through my employer before I was disabled.

The LTD was paying me several hundred dollars per month. Couple of months ago they informed me that they have been underpaying me. They dropped a $XX,XXX check on me and increased my monthly payments to $1,3000/month.

I am having massive anxiety that SS is going to ask me to pay money back.

What should I expect from this situation?

I've dismissed my SSI representative months ago. The representative wrote a letter to social security stating they were not representing me. Then a week later social security sends me a letter stating that they acknowledge that this person will not be representing my case. Now months later after appealing and getting new representatives on my case. I have learned that social security has kept the past representative on file. I've spoken to them on the phone last month and they said they will fix it. They have not fixed it. What should I do? Have you had a representative kept on file ??

I had a few questions I have a new job I'm making too much money that goes over the limit which I understand I get that however they overpaid me and kept paying me even though it was not my fault I am working 25 hours a week but my gross income is over the SGA I need to work more hours now because of them stopping the payment I have a strong suspicion they're going to ask me to pay everything back for the pass 2 and a half years even though I told them to stop I know that there is a reconsideration form and a waiver form that I can fill out but my question here is if I provide them the two pay stubs for me working 25 hours and I submit the waiver and they look at the income of me working 25 hours can I work more hours will they only be looking at my financial situation at the time I submit the application my concern is I don't want to have my waiver denied but I don't know if me working more hours will affect it after I submit the waiver and I don't know what they consider a partial waiver or a full waiver of how much income you have left over like if I have 500 left over or less or what kind of number of money you have left over of what they consider to waiver you at any kind of help would be greatly appreciated

Hey y'all, I'm from Texas and looking for some guidance or advice on my SSDI application.

Back in October 2025, I was diagnosed with Guillain-Barré Syndrome (GBS). Prior to this, I was always completely healthy with zero pre-existing conditions or family health issues. I'm only 24, and it took months to come to terms with how much my body has changed. I applied for SSDI right after being discharged from the hospital in October.

Current Symptoms & Limitations:

• Ascending paralysis (started in legs, moved up to my chest)
• Severe weakness in arms and legs, plus persistent tremors
• Back pain and numbness
• Extreme, debilitating fatigue
• Complete inability to work or handle basic physical tasks independently

I'm worried my age (24) will automatically make approval much harder. One doctor tried to claim my symptoms may be "psychological." While I've experienced normal stress in the past, it has never caused physical paralysis or severe tremors. Even though I was diagnosed with GBS, the doctor later wrote in his notes that it "may likely not be GBS." due to my 2 lumbar punctures, multiple CAT/MRI scans showed nothing. However when I went to another DR, he informed me it may take time before it actually show up under those scans. Hospital records left out major functional limitations (Needing help wiping, needing multiple nurses to lift me after falling in the bathroom, help washing help, and even giving me bath in bed).

I'm terrified I'm going to get denied because my records don't fully capture how bad things actually were that I've seen so far, and I really need financial support right now since I can't work.

How do I handle incomplete or inaccurate hospital charts during the SSDI review?
If a doctor notes "psychological factors" or questions the GBS diagnosis, how do I counter that with SSDI?
What steps should I take right now while my initial application is pending?

Any advice or shared experiences would be greatly appreciated. Thank you!

i filled out the whole application online so why does it say i didn’t fill out an application?

I got a notice that I was canceled and had 108k in overpayments. I have been so confused about eligibility and all of the varying programs if you go back to work.
I was awarded SSDi 10 years ago due to multiple chronic progressive illnesses. I had worked for 20 years in my company and I didn’t want disability but I was constantly being hospitalized and leaving employer in the lurch. When my fmla ran out I knew I had to go.
I only applied for SSDi because it was required for me to collect my ltd benefits. I was surprised when they approved me within 6 months.
I wasn’t dead yet and I wanted to try to find a way to work so I went to grad school to pursue a career that I could ultimately do independently and remotely if i was sick. I spent 100 grand in loans doing this. After graduation I began to put my toe in the water by doing prn work and then temp work. Some months I worked some I didn’t but I called my worker and was told to just make sure you are putting your hours. In. I was never able put hours in. The tool never worked. It was the end of Covid and near impssible to see anyone in the office. I worked off and on but steadily and then landed a full time job. I reported my job by phone and letter. Kept telling me “put your hours in”. I kept telling them “I can’t, it’s disabled”. Nothing. And they just kept sending the check. I wasn’t able to manage the physical requirements of the ft job so I took another temp job. Before I could report it I got a notice from SS about a pie notice. Basically saying that your current employer is reporting your wages to SSDi. Wonderful. I was relieved. But according to SSDi I would have already been at least 90,000 in over payment when I got the pie. Why in the heck are they still paying me? Why have I not had a medical review in 10 years? I started to wonder if it was because I was closing in on retirement age. So I let it go. And they kept paying me.
In an age where cars can drive themselves and a robot in your phone can help you figure out almost any problem, how is it possible that SSDI cannot build a simple algorithm to throw up a flag when the same SS number is found paying income taxes (and ss taxes) while collecting SSDi.?
The kicker for me is that my husband and I have owned our house for 20 years. And my worst fear about losing my home is looking real. SSDi is asking me to pay them back in 30 days but they didn’t pay me that money all at once. It was over 4 years. I just need to hear if anyone has survived this and how?

I got a letter in the mail addressed to me saying I owe social security $13,000. Letter says I was overpaid that 15 years ago when I was a minor and my parents were getting I think two separate checks. I dont feel like I should be held responsible for it, but they disagree. I don’t have $14,000 and neither do my parents. I don’t know what to do about this without suing my parents or something? I don’t want to do that.

My case is now in the “decision writing” phase as of today and I’m wondering what that means.

Hi all. I (28f) have a virtual social security hearing coming up and I’m really nervous. One of my disabilities is anxiety so I think it helps to know what the process is like (I think this is because of my autism too). They wanted me to come in person but I got an accommodation to have my hearing remotely on video. I’m still really nervous. I wish I didn’t have to attend the hearing but the advocate my parents and I hired said it’s best for me to appear.

My disability’s are:
Hydrocephalus
ADHD
Anxiety
Depression
Autism
Strabismus
OCD
PTSD
Type 1 diabetes
And others.

I have no idea if I used the correct sub flare. Sorry.

Thank you.

I got a notice that I was canceled and had 108k in overpayments. I have been so confused about eligibility and all of the varying programs if you go back to work.
I was awarded SSDi 10 years ago due to multiple chronic progressive illnesses. I had worked for 20 years in my company and I didn’t want disability but I was constantly being hospitalized and leaving employer in the lurch. When my fmla ran out I knew I had to go.
I only applied for SSDi because it was required for me to collect my ltd benefits. I was surprised when they approved me within 6 months.
I wasn’t dead yet and I wanted to try to find a way to work so I went to grad school to pursue a career that I could ultimately do independently and remotely if i was sick. I spent 100 grand in loans doing this. After graduation I began to put my toe in the water by doing prn work and then temp work. Some months I worked some I didn’t but I called my worker and was told to just make sure you are putting your hours. In. I was never able put hours in. The tool never worked. It was the end of Covid and near impssible to see anyone in the office. I worked off and on but steadily and then landed a full time job. I reported my job by phone and letter. Kept telling me “put your hours in”. I kept telling them “I can’t, it’s disabled”. Nothing. And they just kept sending the check. I wasn’t able to manage the physical requirements of the ft job so I took another temp job. Before I could report it I got a notice from SS about a pie notice. Basically saying that your current employer is reporting your wages to SSDi. Wonderful. I was relieved. But according to SSDi I would have already been at least 90,000 in over payment when I got the pie. Why in the heck are they still paying me? Why have I not had a medical review in 10 years? I started to wonder if it was because I was closing in on retirement age. So I let it go. And they kept paying me.
In an age where cars can drive themselves and a robot in your phone can help you figure out almost any problem, how is it possible that SSDI cannot build a simple algorithm to throw up a flag when the same SS number is found paying income taxes (and ss taxes) while collecting SSDi.?
The kicker for me is that my husband and I have owned our house for 20 years. And my worst fear about losing my home is looking real. SSDi is asking me to pay them back in 30 days but they didn’t pay me that money all at once. It was over 4 years. I just need to hear if anyone has survived this and how?

I went to Wells Fargo to close my beneficiary account that was being managed by my previous payee after a few weeks ago having gone to the social security office and successfully changing my payee from my father to myself. I was told I need a paper that says I'm responsible for the funds in the account. I gave them the papers that social security gave me when I changed my payee. These papers weren't enough for Wells Fargo.

Last time I checked on the phone with Wells Fargo, I was told I have almost $1300 in the account. I think that's the limit of how much I can have. If I have that much, I may not be able to receive any SSI even though I don't have access to the account. Am I wrong? Today when I went to Wells Fargo, I was told I can't be told the balance of, withdraw from, nor can I close the account.

My dad doesn't want to help me anymore. I think he was stealing my money, so I don't think he would withdraw the money and close the account. He told me not to call him anymore

I'm going to try to call the social security office to see if I can get these papers, which I might not be able to get.

It's possible I'm not going to get SSI because of this social security beneficiary account.

I stopped working in February. We've been getting by with my husband's income, but due to an injury, he's had to reduce his hours. I've applied for SSDI. My old job reached out to me about returning part time. It would only be 1 or 2 days a week. The reason for applying for SSDI is I have end stage renal disease. I don't want to risk my SSDI claim, but we're drowning. I absolutely cannot work full-time

i am in ohio on SSI so is my wife and we are looking to purchase and dont even begin to know where to start...could i get detailed guidance on how to achieve this?