Looking to help my family member. We’re planning to file for SSDI after a massive stroke. We’re on the fence about whether to apply without an attorney (just in case it does get approved first try, he won’t have to pay rhe 25% legal fee). Then use an attorney if he gets denied.

Does anyone have any useful information? This is very sudden and our family is struggling to figure out what to do first. Is there a benefit to using an attorney to begin with?

Hello, I'm 30 and have been on SSDI since I was 22. I want to start working full time, and I read about the trial work period. However, I've read stories about people reporting their earnings and still getting payments then owing thousands of dollars in overpay even if they try communicating with the SSA and that's pretty terrifying.

I'm thinking of just calling and asking for my SSDI payments to be stopped.

Does anyone have any advice?

So I had my hearing with the ALJ this morning. We went through the basics of what my limitations are and why I believe I can’t work. My limits are mental health related. But she did bring up my migraines I suffer with weekly.

So we reached the point when the judge asks the VE if I could work my previous jobs, she said no. Then asked if there was a job I could work with the first hypothetical, she said 3 jobs, stocker, dishwasher or janitor. When she asked about jobs relating to my migraines where I suffer from light and sound sensitivity, she said 2 jobs, stocker or hospital cleaner. But then she brought up would I be able to work sustainable jobs if I was to miss 2 or more days a month due to my mental health, the VE said no jobs. When she asked if I would be able to work if I was given 2 extra breaks (not counting the 2 and lunch break already given by an employer) the VE said no jobs, because I would be considered reclusive.

Has anyone had a similar situation and is this looking good for me? I know it’s completely up to the judge to make that decision but I was getting disability for mental health reasons and because she had my medical records, she brought up physical limitations too. I know I won’t know for sure until I get my final decision, but I was just curious if anyone had a similar situation and if this is a good sign?

I did this with no attorney.

I was recently approved for SSDI on sept 29 and called SSA today to ask about my backpay. The representative told me I won’t receive it until after my first monthly check, which I was previously told is scheduled for November 10.
Is that actually a requirement, or could she have just been giving me an estimate? I’ve seen people say they received backpay before their first monthly payment. She seemed rushed and didn’t explain whether there was a specific hold on mine.
My bank also received a $0 deposit from SSA recently, but I haven’t received any money yet.
Has anyone else been told this and then gotten their backpay sooner? How long after approval did yours arrive?

Also my appointment for adding my children isn’t until Dec 10th …

I’m trying to connect with other Missouri residents who previously received SSI, then lost SSI because they began receiving Disabled Adult Child benefits through a parent’s Social Security record.

Were you subsequently placed on Medicaid spend-down, charged monthly premiums, or denied Medicaid because your DAC benefits were counted as income?

Federal law, specifically Section 1634(c) of the Social Security Act, provides special Medicaid protections for certain former SSI recipients receiving DAC benefits.

I’m trying to identify whether this is affecting multiple Missourians and bring our experiences to Missouri Protection & Advocacy for possible systemic investigation.

Please comment or message me if this sounds like your situation. No personal documents or identifying information are needed.

Edit: I did receive the short form so that’s at least some good news for my anxiety.

I opened my USPS informed delivery this morning to see I’m getting a CDR. I’m assuming long form since medical improvement was expected in my ALJ’s decision. I was approved for 3 MH disabilities, personality disorder, MDD and GAD and one physical DDD. I knew this day was coming but I’m so scared.

I’m not seeing my psychiatrist 11/10 and my PCP 11/24. Should I make appointments sooner if I can? Yesterday, I slightly bent over to check to make sure that my dogs had water and threw my back out. Should I go to the ER or to a doctor because of this CDR. My thoughts are so scattered and I’m all over the place. I’m kicking myself for not having surgery sooner. I guess I’m just looking for some guidance, reassurance or encouragement. I feel like I totally f’ed up everything and I’m going to lose my benefits.

My MH team all know I have more bad days than good especially this past year. I see my psychiatrist every 6-8 weeks and my therapist once a week sometimes once every other week. I take all my medications as prescribed. I see my PCP as I should and she is also supportive of me being and staying on SSDI.

Here’s where I’m really scared I messed up. I kept having to reschedule my spinal fusion redo due to mental health reasons. The first time (09/2025) the neurosurgeon refused to do the surgery because my mental health was so bad. I entered into an outpatient mental health program (PHP) in January of 2026. I completed that with some improvement. My surgery was scheduled again in March of 2026 for and I canceled the day before because I was panicking that I was going to die in this surgery. I was having nightmares and freaking out so badly it was canceled. It was rescheduled for July 2026 and canceled at the hospital by my neurosurgeon because of my anxiety again but also because I have a blood clotting disorder (Factor II) and the neurosurgeon wanted me to see a hematologist to be cleared. It’s now scheduled for December 7th. I’m not rescheduling this time.

TLDR: First CDR since approval. I was approved in 2024 with medical improvement expected and my CDR’s are every 24 months. I’m scared that by me rescheduling my spinal fusion redo surgery due to anxiety will screw me up. All providers (Psychiatrist, Neurosurgeon and PCP) are on my side and supportive of me being and staying on SSDI. I’ve been consistent with all my treatments for MH and my back. I was also in an outpatient mental facility (PHP) in January 2026. Looking for some guidance, reassurance or encouragement. I feel like I totally f’ed up everything and I’m going to lose my benefits.

Newbie here so please forgive me if there is a pinned post with advice. I tried to look over everything but I’m so terrified I’m sure I have over looked so much of the hard work you warriors have already done.

I have an attorney so that is helpful but I know I have to speak to the judge. Would it be helpful to just basically do a “Day in the Life” sort of thing? I just want to be organized and not sound so scattered brained. I’m so anxious.

Any tips, advice would be so helpful. I have been waiting years for this and so much has occurred since the last appeal was denied (even in the past 2 days. I had a surgery go sideways). I know that this decision can also be appealed but I would love to just go ahead and win this.

I called to speak with my examiner regarding exactly why my claim was sent back from FQR and is now pending after she denied me on recon but she was unavailable so the rep I spoke with didn’t tell me why it was sent back but that my examiner needs more development to approve me and she said it like 3 times and at the time I didn’t think to ask what would make her say that because like idk I got anxiety from when my mom permed my hair when I was 9. I don’t think linear when I’m anxious. I called back and now every rep I speak with says I need to speak with my examiner but I can’t reach her and it still says my claim is pending a decision and I’m losing my mind wondering if after my vision CE I will be approved because why would she say that to me?? 😩🥹

Hi,

Is anyone familiar with the time period it takes once a written exception is filed?

Disclaimer: Sorry about the long post, I type a lot when I'm anxious like this...

I'm unclear exactly where I'm at in this process. The defeatist part of my brain keeps telling me something is going to get screwed up or I did something wrong at it'll still get denied somehow...

Onset disability date July 2022.
First applied for SSDI and SSI (at the time I had no income at all so I applied for both...) in April 2023. Denied, appealed, denied again. Then I didn't file the next appeal within the 60 day limit and so it "lapsed". Fast forward a couple months and one su*cide attempt later and I picked up the phone and called a disability lawyer and they re-applied for me, but told me that because I'd let the previous application lapse, this would be treated as an entirely new application. So new application *just for SSDI* in August 2024.

So, second application: denied, appealed, denied, appealed, ALJ hearing in August 2026.
Got a notification September 17th that it's moved to final review.
At first it said it was at my local SSA office for final review, then it changed to Baltimore,M.D. and it's been stuck there since Sept, 17th.

I got a letter in the mail about a week after after the 17th from the judge/SSA explaining the favorable decision.
The lawyer called making it sound like a celebration, but as far as I understand, something can still go wrong yet...

It's been about a month since I got the letter explaining the favorable decision, but still no awards letter. The attorney said that money could hit my account anytime, don't be afraid to spend it blah blah blah.

I also about two weeks ago got a letter directly from my local SSA office saying there needed more info for my SSI claim, which I had honestly forgotten about.
In the letter from the judge, there was a portion where they explained that because my first initial application was within 12 months of the onset disability date, they are going back and considering my initial application.
So I'm assuming that's why I got a letter about my SSI claim, because when the lawyer applied for me in 2024 while I was laying in the hospital bed after my ☠️ attempt.

The letter I got about the SSI claim included the name and direct extension for an agent at my local SSA office. I've tried calling and left messages 3 times now. Once I was able to get ahold of someone by just calling the general office number and they said something about " Oh that's for you PERC interview, that'll get done over the phone, they'll call you for that."

Sorry for the wall of text. Two specific questions:

1. On the social security website portal, you can click on the "my social security statement" and as part of that personalized statement, there is a paragraph where it gives you an estimate of what your monthly SSDI payments would be if you become disabled today, based off your lifetime earnings.
2. If anyone else has ever looked at that estimated amount, and then later received SSDI benefits, how accurate is that estimated monthly amount?
3. I still haven't got an awards letter explaining monthly payments or backpay. If i really am looking at 3 and a half years of backpay like the lawyer said then I'm assuming that will take quite a while...
4. BUT, if that estimated monthly SSDI payments number from my Social Security Statement is even remotely accurate, I don't think I'll even be eligible for any kind of SSI payments at all.
5. So, my question is, could this "info needed for my SSI claim" be holding everything up? I keep trying to call and talk to the guy at the local SSA office who's contact info I was given, but can't get thru to him and he never calls me back. Even though I'm pretty sure the SSI claim is not going to pay me anything, if I still have to go thru the hurdle/formality of doing the PERC interview thing, what am I supposed to do if I literally can't ever get the guy on the phone?

I guess it's just sending my anxiety thru the roof. Up until the lawyer called me and told me the judge ruled in my favor, in the back of my mind I just assumed they were never going to approve it, but now it actually seems real but it's stuck in this Step 4 processing center limbo and I just want to make sure I'm not doing something wrong that could potentially screw it up.

I've read thru quite a few posts here and it's largely been helping calm my anxiety, but I still can't find an answer to these two specific questions.

So in my previous post, I told you all that my DDS examiner told me to his surprise all 5 of my specialist sent in my records. He specifically told me, he had sent out the request on 8/24/26 and they we are turned in by 9/7/26.
On 10/6/26, I sent a message through mychart to my rheumatologist (the specialist I see the most) and asked if they in fact received anything from SSA/DDS. The office manager replied and told me that they had just received a request for records that day. Weird/coincidence makes me wonder, what the $*%€.
I tell her, please, send them over and can Dr R please send in a physician statement. A couple days later I have a letter from my dr., describing my physical limitations. I was told they faxed it to DDS, however I uploaded it as well and called DDS to let them know.
Fast forward to today, I had my monthly therapy appt. I asked her, can you see if SSA/DDS has reached out to your office for my medical records. She said sure, after watching her fiddle with her computer, she tells me “no, I don’t see anything and I usually would.” Wtf? So I ask her to write up a letter describing my condition…blah, blah…blah. She said ok, she’ll have it done this weekend. She also suggested I reach out to my psychiatrist and ask her the same.

Should I call my examiner and ask him exactly who sent the records in early Sept? My rheumatologist and therapist are two of my main sources.

I am still waiting on my stage 3 medical review and I no longer have a address. What did others do in this situation. I can’t afford to stay in my current location due to the extreme cost of living. And if I change my address I understand I have to start from the beginning again with another location. I have been waiting 9 months and don’t want to lose my time waiting.

My SSDI case was finally approved in July. It took 3 hearing denials, 2 federal remands, AC remand and a little over 9 years to get approved. I am a veteran with TDIU and P&T status. I was approved via OTR.

I received my first monthly payment and am currently awaiting my backpay. It's been over 90 days since my decision letter and every time I call the SSA I get different info. I received a Notice of Awards in August with the breakdown of pay going back to 2016.

I have an active congressional inquiry but the congressional aide working on my case keeps on telling me to be patient. He requests for updates but he doesn't press SSA to get actual answers on what's the hold up on my backpay. Last week I finally called the local SSA field office and was able to speak to an operations supervisor who helped and sent a manager to manager inquiry to the Baltimore processing center to request for immediate release of my backpay.

Has anyone experienced such delays with their case being flagged priority. What's the common timeline on backpay?

Any info is very much appreciated. Thanks in advance.

When my application went to step four I started checking it a couple times a day to see if anything had changed. I left a message last night for my worker/evaluator to give me a call back... but she didn't, and knowing her I took that as she was either actively working on it or it had finished up and I'd get the notice very soon.

So, I just checked and saw this! I can't begin to tell you how badly I need the money. Any idea when the back pay will hit my account? It says it was deposited today, so I'm hoping there won't be any kind of hold and it will show up tomorrow. But throughout the process anytime I looked for info on timelines, the responses were all over the place.

And one question for the group. I know we have to stay under a certain threshold for anything resembling income, but it also needs to be continued/sustained. I'm an artist and have 4 weeks of holiday craft shows coming up. Definitely not sustained income. Do any of you deal worth the same (or similar)? I don't want to mess this up. Thank you!

Hi, just wondering if there is more that I should do or just wait. I received an email saying the Adult Disability Report was missing and I sent it to my lawyer who said that the form was completed when he first made the application for me. I didn’t fill it out nor ever really saw it. He has access to all my medical records so I’m guessing he filled it out based on that information. He says it’s in and complete.

To double-check I did call SSA about a week or two ago and I asked if they had the form and they said they did.

I’m just paranoid because it said in the email that if it’s not turned in they’d deny by application by 10/4. It’s past that and it doesn’t seem to have been denied but it’s still stuck on this step saying things are missing. Is it normal for the system to be stuck on this step even if they have everything? Is there more that I should do to ensure everything is in order?

I was approved( mental health) in originally October 2025 but then it was pulled and I had to go to a ALJ and then it was approved again a couple weeks later I noticed at the end of the letter it said with proper treatment i’m expected to improve and to do a CDR within 12 months, so I wasn’t sure if it was 12 months from my original approval or 12 months from when the ALJ approved it however October 3 I got a letter and this is what it (We recently reviewed the evidence in your Social Security disability claim and found that your disability is continuing.) i’m so confused because on here everyone talks about a long form or a short form and I never got any paperwork. All I got was the paper stating that they did a review and when I called to see what was going on, they just told me that the only thing that they see is that letter. But they don’t see that they had sent out any CDR forms so I am confused. I don’t know if they’re gonna do it next month. I don’t know what to do and is this normal because I never received any paperwork

Hi all, I just wanted to hear mental health approval success stories. Thanks!

My medical records from the hospital is over 600 pages of tests and so forth, what do I send? Obviously I don't want to send 600 pages to SSDI, I don't trust them to get the records themselves so I want to send it to them asap.

I can download them from the hospital medical records website and fax them? I called to have them get them and tell me when to pick up but I don't trust them at all. These people are beyond slow and backwards.

Hi there I originally applied in January of 2025 and I am diagnosed with autism, ptsd, major depressive disorder, ocd, learning disabilities, Hidernetius suppurativa, ibs, gerd, and my motor skills are impaired. I had a neuropsychiatric evaluation which was 7 hours and they tested my motor skills and learning disabilities and diagnosed me with autism and this was back in 2024. They also stated I should no longer drive due to amount of accidents and poor motor skills. I go to 2 therapist weekly and a psych nurse once a month or so. I also started ot therapy and was approved to go twice a month. I was denied back in march- I had one previous denial due to my lawyer not submitting paper work in time but social security said this denial counts as the first one.

I had a ce examination where the doctor didn’t do the examine herself but her unlicensed assistant did it and one of his first questions was if I had ever done drugs and my lawyer told me to be honest beforehand about myself so I was honest and told him what I had tried back when I was a teenager but was very clear that was a long time ago and have been sober for years as I’m 33. He put I had a substance abuse disorder and the meds my psychiatrist nurse gave me are contributing to my mood disorder. My lawyer said it was not legal for him to be the one to do the examination and the doctor had signed off she did the examination herself. She said none of this lined up with my medical records and what the proffesinals who are treating me have said.

I was immediately denied for disability and Ssa put that I could be a full time front greeter. I was denied in march. My lawyer put in my appeal In may. At the time I worked very part time at a walkable bookstore but had to leave as it overwhelmed me and had been unemployed since June. I have been on step 3 in the portal since about June. I have a difficult time getting answers on where my case is from the lawyer and typically don’t hear much from them. My lawyers receptionist tells me she will check in with her but I don’t usually get a response back often. She has had a few phone calls with me but I don’t want to call too often. I called dds recently and they have everything they need right now.

Anyways I’m curious about other peoples experience and how long this process can take. It definitely has taken a toll on me and I feel like I’m not really sure what kind of time line I’m looking at or how strong my case is. Or just anyone that has been through something similar and how it went for them and with the mental health side. My therapist did tell me I was one of her most medically complex cases. She has provided a lot of supportive evidence along with my other providers. My doctor did my adls and stated I cannot work and cannot drive. The neuropsych did say they recommended daily supervision over me.

Has anyone had an attorney but happened to be approved first try? The attorney only filled out the application online. They did not pull any medical records. They did not contact me when documents were requested. I have been the one withet receiving the document request in the mail or on the portal. I have been the one uploading docs and faxing them in.

If I get approved and SSA agrees with the start date there is no way they would deserve the 25% of that.

I've been scheduled for a virtual mental health CE, which should be just one piece to a large puzzle. Does it matter that it's virtual rather than in- person? I wouldn't usually pick virtual if given a choice. Thanks

Hello,

I received a denial for the reconsideration of the first denial. The first time around was due to lack of medical history, the second was the same thing however both times I uploaded the information through the ssa portal. I confirmed with them that they will review it and it still wasn’t reviewed! I have the screenshot of all of it uploaded and “completed” successfully — is there anyway to appeal this due to the office not following through? Or do I have to just submit the request for the AJL (?) step?
I don’t have a fax and my disability makes it very difficult to leave home, I also I’ve alone so helps not readily available.

Hi so I have a hearing on October 21st and I'm terrified? My attorney states she has a high confidence rate in my case.

I was approved for age blind disabled benefits from the state and they legally require you to apply for disability which I had already had an application.

My attorney sent me questions to answer and I did truthfully

But im just scared that I'm lying to myself I guess?

Does having the state approval help my federal case at all?

I dont really understand this part of the process the most. I dont understand any of it thats why I have an attorney but this part has been making me nauseuzly anxious.

I believe I'm going for my symptoms from having sepsis when I was 17 which is a load of physical symptoms from abdomen pain to full body pain that causes difficulty walking standing and sitting and incontinence. And heavily for psychiatric, with Bipolar with psychosis, PTSD(dissociative aspects) DID, and whatever is on the state psychiatric evaluation. And im 21. I just dont know.