Survivor benefits confusion - husband died during SSDI waiting period, what happens to disabled adult son's benefits?

I'm so sorry for your loss. The whole system is a NIGHTMARE when you're grieving. First, your husband's SSDI claim automatically converts to a survivor claim when SSA is notified of his death. Even though he never received payments, both you and your adult disabled son can receive survivor benefits based on his earnings record. Your son can receive Disabled Adult Child (DAC) benefits which are typically higher than SSI. Since your son gets his appointment today, they'll probably start that process. For yourself, yes - taking survivor benefits at 60 means a reduction to about 71.5% of your husband's full amount. Each month you wait after 60 increases the percentage until you reach full retirement age. The $23K earnings limit sounds about right for 2025 (they adjust it annually), but be careful because earnings above that WILL reduce your benefits until you reach full retirement age.

Thank you so much for explaining. So if I understand correctly, even though my husband never actually received any SSDI payments, the fact that he was approved means both my son and I can still get survivor benefits based on his record? That's a relief. For my son's appointment today, should I tell them we want to switch him from SSI to the DAC benefits? I'm worried about making a mistake and him losing benefits.

so sorry about ur husband passing. my brother had almost same thing happen. make sure u bring ALL the paperwork to ur call today! death cert, marriage cert, ur IDs, his ssn, birth certs. they will need EVERYTHING or they'll just reschedule u again. super frustrating.

They told me it's a phone appointment, so I'm not sure how to provide documents. Should I try to email them in advance? Or will they just take the information over the phone and then I'll need to bring documents somewhere later? This process is so confusing.

Your son will almost certainly be better off switching from SSI to DAC (Disabled Adult Child) benefits on your husband's record. The technical term is actually

wait i'm confused... if someone dies during the SSDI waiting period, doesn't the family get some kind of lump sum payment too? or am i thinking of something else?

You're thinking of the lump-sum death payment of $255 that Social Security pays to eligible surviving spouses or children. It's a very small amount that hasn't been increased since the 1950s. But yes, the OP should definitely ask about this during her appointment - it's separate from the monthly survivor benefits.

Thank you all for the helpful information. I just got off the phone from my son's appointment and wanted to update. They are starting the process to convert him from SSI to the DAC benefits based on my husband's record. They said it would likely be a higher monthly amount plus he'll qualify for Medicare after 24 months (he currently has Medicaid). The representative explained that even though my husband never received SSDI payments, the fact that he was approved means we can claim survivor benefits. She also mentioned the $255 death payment that someone asked about. For my own benefits, she confirmed I can start at 60 with the reduction or wait for a higher amount. One thing that confused me - she mentioned something about my son's SSI possibly continuing for a month or two during the transition. Does anyone know how that works?

That's great news about your son's benefits! For the SSI transition, they often keep SSI payments going during the first couple months of the switch to DAC benefits to prevent any gap in coverage. Once the DAC benefits are processed and start (which can take 2-3 months), they'll review the overlapping period and may request repayment if there was any overpayment during that time. It's their way of making sure he has continuous income during the transition. Just set aside some of those funds in case there's an overpayment letter later.

So sorry for your loss. I had a similarly frustrating experience with SS last year when my spouse passed. I couldn't get through on their phone lines for weeks and when I finally did get someone, they gave me conflicting information every time. I eventually found this service called Claimyr (claimyr.com) that got me connected to an actual SSA representative in under 5 minutes instead of waiting on hold for hours. They have a video that shows how it works: https://youtu.be/Z-BRbJw3puU. It made dealing with my widow benefits so much easier during an already difficult time. Just thought I'd share since you mentioned having your own appointment next month - might be helpful if you need to reach them before then.

Thank you for the recommendation. I'll definitely keep that in mind if I need to reach them before my scheduled appointment. The waiting and uncertainty is definitely adding to an already stressful situation.

Just to clarify some technical details based on your situation:1) Your son will transition from SSI to Disabled Adult Child benefits (often called CDB - Childhood Disability Benefits - in SSA's system). This happens under Section 202(d) of the Social Security Act.2) Since your husband was fully insured for disability (proven by his SSDI approval), the fact that he passed during the 5-month waiting period doesn't affect survivor eligibility.3) For you at age 60, you'll receive approximately 71.5% of your husband's Primary Insurance Amount (PIA). Each month you delay increases this percentage slightly until you reach your Full Retirement Age (FRA).4) The earnings limit for survivors under Full Retirement Age is $23,640 in 2025. Benefits are reduced $1 for every $2 earned above this amount.5) Your son's DAC benefits will likely be 75% of your husband's PIA, which is typically significantly higher than the SSI federal benefit rate of $943/month (2025 amount).6) One important consideration: When your son transitions from SSI to DAC, he'll lose Medicaid after a certain period. He'll get Medicare after 24 months, but you might want to explore options to maintain Medicaid as secondary coverage for services Medicare doesn't cover.

Thank you for this detailed information. I'm particularly concerned about the Medicaid issue you mentioned. My son has several medical needs that I know Medicare doesn't cover well. Is there a way for him to keep Medicaid as secondary coverage? The representative didn't mention this potential gap in coverage.

OMG I went through EXACTLY this when my husband died during his SSDI waiting period!!! The stupid SSA people kept giving me different answers every time I called!!! One said my disabled son would lose all benefits, another said he'd get more - it was a NIGHTMARE!!! It took me SIX MONTHS to get everything sorted out. Make SURE you get the name and direct extension of everyone you talk to because I promise you'll get different answers from different people. And write EVERYTHING down!!! They told me one thing then denied saying it later!!! The system is BROKEN!!!

thats why i tell everyone to record their calls with ss. i always say \

Just a note on recording calls - this depends on your state's laws. Some states require only one party's consent (yours), while others require all parties to consent. It's always best to get verbal permission as suggested, but be aware of your local laws regarding call recording.

To answer your question about Medicaid: When your son transitions from SSI to the higher DAC benefits, he may initially lose Medicaid eligibility due to the increased income. However, there's special protection called

This is incredibly helpful, thank you! I'll ask specifically about the 'deemed SSI recipient' status at my appointment next month. I had no idea there were these protections in place. I've been so worried about him losing medical coverage during this transition.

I'm so sorry for your loss, and I understand how overwhelming this must be while you're grieving. Based on what you've shared, it sounds like you're getting some good guidance from the SSA representatives. One thing I'd suggest is asking specifically about the timeline for when your son's DAC benefits will start - sometimes there can be a delay in processing, and you'll want to know if there might be any gaps in his coverage. Also, when you have your appointment next month, make sure to ask about whether you're eligible for any retroactive benefits. Since your husband was approved for SSDI before he passed, there might be some considerations about benefit timing that could work in your favor. The fact that you're taking care of your son shows you're being a great advocate for him during this difficult time. Don't hesitate to ask for clarification on anything that doesn't make sense - you have every right to understand how these benefits work.

I'm so sorry for your loss, Anastasia. What you're going through sounds incredibly overwhelming, especially while you're still grieving. I want to address a few key points that might help clarify things for you: Regarding your husband's SSDI approval - yes, even though he never received a payment, his approval establishes the foundation for survivor benefits. The SSA essentially treats it as if he had been receiving benefits, which is why both you and your son are eligible. For your son's transition from SSI to DAC benefits, this is typically a very positive change. DAC benefits are usually significantly higher than SSI (often $1,500+ vs the current SSI rate of $943), and he'll eventually get Medicare coverage. The SSA representative was right to start this process. One thing to be prepared for with your own appointment next month: they'll likely ask about your work history and future work plans. Since you mentioned you don't currently work because you care for your son, make sure to mention this - there may be additional considerations for caregivers in your situation. Also, don't worry too much about the timing of applications. The SSA will backdate benefits appropriately based on when your husband passed away, so waiting until after April shouldn't negatively impact either of your benefit amounts. Keep all your documentation organized and don't hesitate to ask for written confirmation of anything they tell you. You're doing everything right in advocating for both yourself and your son during this difficult time.

I'm so sorry for your loss, Anastasia. What a difficult situation to navigate while grieving. I just wanted to add one important point that I haven't seen mentioned yet - make sure to ask about the potential for retroactive payments when you have your appointment next month. Since your husband was approved for SSDI in January and passed away at the end of January, there might be some retroactive survivor benefits available from his date of death. The SSA sometimes pays survivor benefits back to the month after the worker's death, which could mean you're eligible for February and March payments. Also, regarding your concern about the "locked" account - this is actually pretty standard when someone passes during the SSDI waiting period. The SSA has to convert the disability claim to survivor claims, which involves some backend processing that temporarily restricts access to the record. It sounds like your son's appointment went well and they're moving forward with his DAC benefits, which is great news. One last thing - keep detailed notes of every conversation you have with SSA representatives, including names, dates, and reference numbers. This has saved me so much trouble when dealing with government agencies in the past. You're doing an amazing job advocating for both yourself and your son during such a challenging time.