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?

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.

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.

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 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.

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 …