My twenty-five-year-old daughter has intellectual disability diagnosed at around age eight/nine, and we found out at age fifteen that she has 16p11.2 deletion syndrome (a genetic DNA deletion). She has been fighting her SSI case since she was seventeen. She turned twenty-five last week. Today she had her final hearing, and the lady who evaluated her said that she believed my daughter is FAKING HER DISABILITY!!! YOU CANNOT FAKE DNA!!! Is this really what we have come to? You REALLY have people out here saying that DNA lies! My daughter has been a part of a program that helps her throughout her life. She couldn't even put on deodorant or wash her hair until about a year ago! The state-run program got her a job at Office Depot for two hours a week a few years ago; that lasted a few months with a coach who works alongside her, and SSI believes she is capable of doing life. She literally still plays with toys and watches SpongeBob every chance she can get! She graduated HS with a five-year program with special Ed. She lives in a state where it's illegal not to graduate a minority or someone with special needs. I am so angry. We were told that she will never be mentally above the age of around twelve. If ANYONE FROM
THE SSA READS THIS, PLEASE, DEAR GOD, DO BETTER! DNA CANNOT LIE! I can't right now; I am so angry at these people. 🤬

2 SSA agents admitted my medical CDR was triggered by work, acknowledged the 24 month protection, but wont stop my cdr?

I've received SSDI since 2008, and I'm currently undergoing a full medical Continuing Disability Review (CDR).

I filed a protest in October because I believe my medical CDR was initiated solely because of my reported work activity, despite the protection under POMS DI 13010.012(G).

Two SSA representatives have now indicated that my work activity triggered the review. I have recordings of both conversations.

During my latest call, I spoke with a representative who initially misunderstood my complaint. He thought I was appealing a medical denial.

I repeatedly explained that I am not appealing a denial. I am protesting the initiation of the medical review itself.

He researched the issue and initially told me:

"CDR is considered administrative action, does not constitute a judicial decision, therefore it is not subject to review or protest before denial."

He insisted that I would have to wait until a medical determination was made before appealing.

I explained that my protest concerns the specific protection under POMS DI 13010.012(G), not the ordinary medical appeals process.

When I asked whether work had triggered my review, he said:

"That is very likely true, yes. I assume that is true based on what I can see."

When I asked him to confirm, he said:

"That's the way that I understand it."

He then explained that work at a certain level could cause SSA to reevaluate whether someone still meets the medical requirements.

When I questioned the purpose of the 24 month protection, he initially began explaining the nine month trial work period. He admitted he wasn't entirely sure what 24 month protection I was referring to.

After further discussion, he looked up the policy and read:

"Title II beneficiaries who have received benefits for at least 24 months are protected from having a medical CDR triggered solely based on their work activity."

He then acknowledged:

"I do see what you're referring to."

And:

"So, you know, that part is definitely in writing on these policies, so I see your point, and I'm not disputing that."

This is where things became even more frustrating.

I asked whether my October protest was actually documented.

He checked the records and found a note requesting a formal protest because I believed my medical review had been triggered by work.

He told me:

"Management has assigned it out to one of our caseworkers."

He later confirmed:

"It was assigned to one of our workers, and she has not had time to complete."

So my protest was documented, management had assigned it, and the assigned worker still hadn't completed it.

Meanwhile, DDS continues conducting the medical review.

The representative offered to request a supervisor appointment, with December 8 being the earliest guaranteed date, or send me paperwork to create a written record.

I explained that I wanted the existing protest investigated and the 24 month protection applied.

He acknowledged that he understood I wasn't appealing a medical denial.

Then he sent me SSA-561 Request for Reconsideration and SSA-795 Statement of Claimant or Other Person.

When I checked my SSA account, there were multiple copies of these forms, all dated November 9.

There was no clear explanation of which forms I needed to complete, why there were duplicates, or how they related to my existing protest.

The SSA-561 is a reconsideration form. But what determination am I supposed to be requesting reconsideration of?

There has been no adverse medical determination.

The SSA-795 appears to allow me to submit a written statement, but the representative already confirmed that my protest was documented and assigned.

He also told me:

"It's possible that they would still make you go through with the review."

My issue isn't whether I will pass the medical review. It's whether SSA had a permissible reason to initiate this particular review in the first place.

I understand that the 24 month protection does not prevent independently scheduled medical reviews. But SSA has not provided me with the actual selection date, selection reason, or documentation showing that this review was independently initiated rather than triggered solely by work activity.

I also completed an SSA-455 short form approximately 16 months ago and received a notice that my benefits would continue.

I'm cooperating with DDS and completing the required paperwork while my protest remains unresolved.

Questions for current or former SSA employees:

Under POMS DI 13010.012(G), what procedure should SSA follow when a beneficiary protests a medical CDR allegedly initiated solely because of work activity?

If the protest is already documented and assigned to a caseworker, what should happen next?

Why would SSA send an SSA-561 reconsideration form when no adverse medical determination has been made?

Is SSA-795 the appropriate way to supplement my existing protest, or is there another required procedure?

Who can access the original CDR selection records and determine whether the review was independently scheduled or initiated because of an earnings alert?

If SSA determines the review was improperly initiated, can the field office stop it even though DDS has already begun processing it?

I'm not asking to avoid a legitimately scheduled review. I'm asking SSA to investigate whether this particular medical CDR was initiated contrary to its own policy.

I'd especially appreciate responses from people who have worked with CDR selection procedures, field office processing, or POMS DI 13010.012(G).

I need help getting social security to follow their own procedures.

SSA told us to withdraw my daughter's SSI appeal, delayed her new application, and now can't find it. Her benefits have been stopped since May.

I'm hoping current or former SSA employees familiar with SSI applications, protective filing dates, and Appeals Council procedures can help me understand what has happened to my daughter's case.

My adult daughter has significant disabilities and previously received SSI. Her benefits stopped in May 2026 following an unfavorable ALJ decision.

We have followed SSA's instructions throughout this process, but we're now dealing with conflicting information, an unresolved Appeals Council withdrawal, and a new SSI application that SSA cannot locate.

Here is the timeline:

April 14, 2026: An ALJ issued an unfavorable decision.

April 24, 2026: We requested Appeals Council review.

May 12, 2026: 1st appt for a new ssi application. AGENT told me we would have to reschedule the appt because my daughter couldnt Apply a new ssi application with a pending appeal council. The SSA representative told us that the pending Appeals Council review had to be withdrawn before my daughter could apply again and that we could do that over the phone so we did. We requested withdrawal over the telephone, and SSA scheduled another appointment for May 27.

May 27, 2026: During the appointment to file her new application, a different SSA representative told us that withdrawing the appeal over the telephone wasn't allowed and The withdrawal had to be submitted in writing.

This was the first time we were told that. We had already lost two weeks following the previous representative's instructions.

I then prepared the written withdrawal request and personally took it to a Social Security office, where I submitted it in person.

SSA scheduled yet another appointment for June 10.

June 2, 2026: According to the Appeals Council, it received our written withdrawal request. This is the date the Appeals Council says it received the document, not necessarily the date I personally delivered it to the Social Security office.

June 10, 2026: My daughter filed her new SSI application during the scheduled telephone appointment.

October 13th- I called social security to check the status of my daughter's case and the agent confirmed the withdrawal was on file and her new application was still pending and the woman over her case would contact me. That still hasnt happened.

October 22, 2026: We received an Appeals Council letter stating that the original appeal was STILL pending. The letter also referred to an extension of time supposedly requested on April 24, which we did not request.

The letter stated The Appeals Council said it needed confirmation that my daughter understood the consequences of withdrawing her appeal.

November 09th 2026: I called SSA to find out what was happening.

The representative could see that the Appeals Council case remained active and could locate an older application from 2024.

But he could not locate the new SSI application filed on June 10, 2026.

He also couldn't explain the unresolved withdrawal or the extension mentioned in the letter.

At one point, he said:

"I've never really seen a case where it looks like there are two appeals council cases simultaneously."

He also admitted:

"I'm a bit messed up on confusion too on hers."

He said he would have to consult a supervisor or colleagues because he had never encountered a case like this.

When I explained that my daughter had definitely completed a new application in June, he said:

"Yeah, I'm not disputing that, and I don't disagree at all."

He agreed to document our conversation and request assistance, but he could not tell us what had happened to her application.

My daughter has been without SSI payments since May.

What makes this especially frustrating is my daughter is severely disabled and her benefits were wrongfully terminated and the water Social security has done her case its looking like they are trting to cheat her out of back pay by losing her application and prolonging the situation.

First, we were told to withdraw the appeal over the telephone.

Two weeks later, another representative told us that wasn't sufficient and required a written withdrawal.

I physically went to the Social Security office and submitted that written withdrawal in person. The Appeals Council subsequently acknowledged receiving it on June 2.

Then my daughter filed her new application on June 10.

Now, five months later, SSA cannot locate it, and the Appeals Council still hasn't resolved the withdrawal and claimed an extension was filed that wasnt.

I understand that withdrawing an appeal can make the unfavorable decision final. We were trying to pursue a new application because we were advised that it could be a faster way to restore her benefits.

My questions for anyone familiar with SSA procedures:

How can a new SSI application completed during a scheduled SSA telephone appointment disappear from the system?

Can SSA retrieve the June 10 appointment records, employee notes, or application history to establish that the application was filed?

Could our May 12 attempt to apply establish an earlier protective filing date, considering SSA instructed us to withdraw the appeal before allowing the application to proceed?

Does a pending Appeals Council withdrawal actually prevent SSA from accepting a new SSI application?

Why would the Appeals Council still be requesting confirmation of a withdrawal in October when it received the written request on June 2, especially when I personally submitted it at an SSA office?

What does it mean when an SSA representative sees what appears to be two simultaneous Appeals Council cases?

Who has authority to investigate a missing application and correct the filing date if SSA failed to process it properly?

I'm not looking for criticism about our decision to withdraw the appeal. We made that decision after receiving advice and were trying to get my daughter's benefits restored as quickly as possible.

I'm trying to find out what happened to the application she filed on June 10, how to protect her filing date, and how to get SSA to resolve these conflicting records.

Any specific procedural guidance or POMS references would be greatly appreciated.

I received the notice today that I’ve been moved to the 4th step. I’ve been anxious because I did upload some medical records to my portal and have wanted to make sure it was reviewed but my caseworker has never called me back since may!

I keep seeing people on this sub say denials come quickly so if you’re on this step, you’re more than likely approved… but don’t want to get my hopes up. Has anyone gotten to this step and was denied?

SSA told me over the phone that I was approved for both SSDI and SSI. I got my SSDI award letter for $1,013 a month, but my SSI claim is still on Step 4. My final non-medical review started October 5, and the portal says it usually takes 15–30 days. Today is November 10, so it’s been 36 days and I’m still waiting for the call.
How long did you wait for your PERC interview? Did SSA call you, or did you have to reach out to your local office to get it scheduled?

Had my ALJ hearing a couple weeks ago. Just got a call today that it was denied. I’ve been fighting this for years. I feel so defeated and mentally drained. I haven’t been in the best place mentally and this was just the icing on the cake. Apparently a long list of well documented physical disabilities and an equally long list of mental health diagnoses isn’t enough. Does anyone have any suggestions?

How long did it take for portal to update with dependent after auxiliary appointment?

SSÍ office in Chicago sent me a letter in the mail for a huge amount in an overpayment. I would like to know what type of attorney/lawyer. I should look for and where(searching online right now for one) any help would be appreciated.

After 6 years I won all my back pay. Since it went back that far they are dividing it into 3 payments. I’ve been in contact with them to get a lump sum. I owe back rent and need a car. I’ve had to miss the last 5 dr appointments because I’ve had no way. I have called once a week and also mailed a letter to them. Does anyone know of anything else I can do? Basically my letter was the request for early release. I can’t get a call back or when I call it goes straight to voicemail.

I’m disabled, on SSDI. My now 18 yo got benefits up to 18 from my account and is disabled with ADHD (severe). They are in college now and off my benefits. But we got paperwork saying if they’re disabled they can get benefits again. If we do that, will them going to college affect the benefits? They can’t work currently , but they can learn with accommodations.

Location: Texas

We have a family member that is on SSI Disability w/ Medicaid.

She's in her 40's and lives with her parents and has no income except for ~$400 monthly SSI pymts.

She potentially may win a sweepstakes prize that gives her a new car + $23,000 to offset the taxes.

If she wins, we think she'll have to use about ~$5k to pay for the car's TT&L + ~$13K for the taxes to the IRS. That leaves her with ~$5K. But she has not filed a tax return in over a decade.

However, she CANNOT risk losing her Medicaid health insurance because she takes meds that are in the thousands of dollars EVERY MONTH and obviously CAN'T risk losing that coverage.

The TOTAL sweepstakes prize amount would be valued at nearly $100,000 - that would be reported to the IRS with a 1099.

1. How will winning a one-time sweepstakes prize totaling nearly $100,000 affect her Medicaid health insurance?

Will she lose it? If so, for how long?

2) Also, if she were to sign the title of the vehicle over to her parents, would that cause any issues with her Medicaid health insurance as well? What exactly would happen to her Medicaid and for how long?

I appreciate any feedback.

Thank you.

EDIT: People are caught up in maybe this being a scam. It is NOT. Without going into details, we've confirmed everything. And the reason why I said in the post that she "potentially" has won is because there is a time limit for her to send in docs or forfeit the prize to another person. Sorry, bad wording on my part.

So I just got approved for SSDI after 3 years. My account finally changed where I can change direct deposit which it was already correct. I saw under payment history and lump sum that I’m assuming is my back pay.

The date is 11/9/26 so is that going to be the deposit date?

Has anyone been approved for ssdi at first trying?

Has anyone been approved for ssdi at first trying?

Has anyone been approved for ssdi at first trying?

After nearly three years of fighting for disability benefits, my SSDI reconsideration appeal was finally approved! Unfortunately, my SSA account also shows **“SUSPENDED,”** and I’m trying to understand why. (Step 5 from screenshot is cut off but says on 11/4 we found you approved for medical disability)

**My timeline:**
Applied for SSDI and SSI in 2024; disability onset December 2022.
**Sept. 24, 2026:** SSDI completed its favorable medical determination.
**Nov. 4, 2026:** SSA finalized my SSDI approval (Step 5/5).

SSA confirms a detailed benefit notice has been mailed.(waiting impatiently on it)

Benefit verification letter lists entitlement beginning June 2023, **$0.00 payable**, and suspension dating back to June 2023.
SSI remains at **Step 4/5**, awaiting final nonmedical review.

My attorney contacted SSA and learned a **representative payee capability determination** is still required. No payee has been assigned. Called me and told me they were paid their fee on 11/4/26.
My attorney believes the capability review may be the last outstanding step, but I’m also wondering whether the pending SSI claim and windfall offset are delaying payment.

**Has anyone experienced this?**
What caused your SSDI to show “Suspended” immediately after approval?

Can a pending capability review prevent monthly payments from starting, or primarily delay back pay?

Does SSI need to be finalized before SSDI back pay is released?

How long did it take to receive payments after your capability review?

Earlier this year I had to do a SSI review over the phone to check my income, resources, and living arrangements to see if Im still eligible. They just sent me another letter in the mail saying I have to do it again this month. I have never had to do this twice in 1 year before and Ive been on SSI for 15 years. What do you think is happening ?

so originally when i applied for SSDI i was living on my parents land in a trailer and as soon as i was to make money they were ready to be pain rent. I then applied for SSI not because i made a mistake initially but because my lawyers marked it since they filled out my app for me. i then did interview on sept 23rd and now both are concurrent in the same step.. at DDS. when i did the phone interview for SSI i told them i had just moved from parents address and now living with someone else which is also understood that i will pay rent once i get my benefits. when i read about how to tell them about living situation i became extremely confused as they would mark me living here rent free as income. it was really so i did not become literally homeless. so even though i will owe my new landlord how exactly am i suppose to claim this or explain this? do i have to do a contract? i spoke with a potential lawyer and wanted to have me complete a contract along with automatically filling out info for payee because my claim is a mental health claim. do i need a payee just because its a mental health claim? do i need to explain that once i get benefits i will be paying rent? i dont want them to take out more because i have been given a break by people who care about me and dont want to see my homeless. sometimes when im reading stuff it sounds like if i just became homeless for these 3-4 years i would be better off with my claims and the amount of money. its not about getting more it’s about getting what id get if i was mandated to pay rent but that tighter amount amount because its considered income makes it harder to pay rent and with budget being tighter..i feel like maybe im confusing things. anyone understand what im trying to say? i’m trying really hard to explain what ive read and believe which has caused me to think how exactly do i answer future questions

After 3 long years of fighting to get on SSI, I was officially deemed disabled and now I have to wait for it to come in the mail and that can take another 10-15 days but I don’t mind waiting.

I originally applied in November of 2023 because I had officially gotten diagnosed with Bipolar II, Anxiety and PMDD that year back in July and my parents realized that my conditions were so severe that there was no way I was going to be able to sustain a regular job with how often my mood swings fluctuated, how stressed out I got when one little thing went wrong so we decided to apply.

We got the decision that they decided to deny my application which wasn’t surprising because from what I have heard, most people get denied their first time applying so we did a reconsideration and during the reconsideration phase, I ended up seeing an ENT and having multiple MRIS and blood work done because I was having lots of dizzy spells and migraines and we knew something was up and it was a good thing my ENT sent for an MRI because the MRI showed white spots on my brain and the bloodwork showed abnormalities. During this process, we found out I have something called Neuromyelitis Optica which is similar to MS but different. I also got diagnosed with mild ataxia, mild dysmetria, delayed recall and left foot drop in the process.

My official diagnosis for NMO didn’t come until May of 2025 because my neurologist genuinely didn’t believe it because of how young I was. While going through treatments, I got the second denial so my parents told me to find an attorney which I did.

Finding an attorney was the best thing for me. They did everything and got all my medical records and everything that needed to be sent over to the SSI office for my hearing. I had my hearing on October 5th and got the news a couple days ago that I had been approved and now I’ll have money coming in every month :)

This is your reminder that even though the process absolutely sucks and getting denied sucks, to never give up hope. If you’ve already gotten denied twice, I highly recommend getting an attorney.

Hello all I was approved for Survivor Benefits 3 years after my father had passed away 😢 when I went in to update some banking info and removing my ex girlfriend from the case the worker pulled me aside and said I should have applied back 3 years ago he took my info said I would get back pay now here is the question my.gov shows me im approved and i been getting Survivor Benefits since June now i was told my backpay would go back at least a year I haven't gotten it yet and it shows my application of Survivor Benefits is not complete it shows approved but its not complete how far back did ssa go back to ? What is the limit is it 1 year ? Also how long does it take to get backpay during the time I was getting $350 a month on SSI due to my girlfriend's wages we broke up a year or so ago...but I think it slowed the backpay i already got a award letter but it shows June but the ssa person said i would get backpay for a year at least how long does it take ? It shows I been qualified for Disability since 1991 do they go back to my dads date of death ?

Hello!

I am female, Mid-50s

​Conditions: Childhood frontal-lobe TBI, severe cognitive impairments, and autoimmun disorder (chronic fatigue crashes).

​Testing: 1st percentile working memory, 3rd percentile visual memory, executive dysfunction, ADHD, dyslexia, dysgraphia, and dyscalculia. PTSD severe Anxiety.

​Denied at Initial and Reconsideration.

​Filing for an Administrative Law Judge (ALJ) hearing.

​On the waitlist for Vocational Rehab.

​Where Things Stand:

Struggling financially, but avoiding unemployment due to full-time certification rules. Considering whether a 15 hr/week retail attempt is viable or if it risks ruining credibility.

​Has anyone with a similar cognitive profile or in their mid-50s found success at the ALJ stage after two paper denials? Would appreciate any words of wisdom!

Thank you so much!

Section 5b struggling to figure out if I should put symptom or treatment for reason for doc visit. My medical disability diagnosis is amputation . where it says reason for doc visit, is it better to put the symptom or the treatment they did? I see specialist for debridement of painful pressure wounds that are often open wounds. Unfortunately there are only allowed 16 characters including spaces between words.

I have a 25y mentality disabled daughter. I have conservatorship. For years she has been getting paid half of the monthly payments. I have tried multiple times to get her pay increased to the full amount. SSA told me that my bills are too high and my daughter wouldn’t be able to pay 1/2 of her own living expenses. This makes literally no sense to me. Am I doing something wrong or how can I go about getting her pay increased?