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Social Security DAC benefits nightmare - daughter marked as deceased while application pending for a year

I'm at my wit's end with SSA and don't know what to do next. In January 2025, I applied for Disabled Adult Child (DAC) benefits for my 35-year-old severely autistic daughter under my late husband's record (he was a veteran). The SSA rep took all our information, warned it could take up to a year to process because of reviewing all her medical records, and gave me paperwork to complete about her medical history since diagnosis. They scheduled a phone appointment for March. Then in February, complete disaster - SSA sent a letter saying my daughter was DECEASED! She is very much alive! This threw everything into chaos. It's taken over 6 months just to get them to correct this error, despite them acknowledging the mistake and apologizing. Meanwhile, it's now been a full year since we first applied, and I can't get anyone on the phone to check the status or even make an appointment. It took interventions from my congressional office AND the ombudsman's office PLUS two hearings just to get the deceased status corrected. My daughter has been on SSI for 33 years, but she has significant health issues not covered by Medicaid. I'm on survivor benefits myself (for over 10 years) after becoming disabled from a fall while caring for her. An SSA worker advised me to take survivor benefits instead of disability since my own work credits were limited. Any advice on what to do next? How do I push this DAC application forward after all this chaos?

Just to follow up on my earlier comment - I wanted to clarify that DAC benefits can actually be substantially higher than SSI in most cases, so continuing to pursue this is definitely worthwhile. The monthly benefit will be based on your deceased husband's earning record, and unlike SSI, DAC benefits aren't reduced by other income or resources. Plus, after 24 months on DAC, your daughter would qualify for Medicare in addition to her Medicaid. One thing to check: has your daughter ever worked? Even minimal work can sometimes complicate DAC claims if SSA needs to determine if she's engaged in Substantial Gainful Activity (SGA). If she has never worked, make sure you emphasize this point to help streamline the determination.

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This is really helpful information. No, my daughter has never worked - her autism is too severe. I'll definitely emphasize this fact. The potential for higher benefits and Medicare coverage is exactly why I've been pursuing the DAC benefits so persistently. Her medical needs are significant, and the extra coverage would be life-changing.

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I've been through this exact nightmare with my brother. The DAC benefits are worth fighting for though. Have you followed up with the congressional office recently? They can request something called a "congressional inquiry status report" which forces SSA to provide updates. In our case, we found out the application was just sitting on someone's desk for MONTHS with no action. Also, don't forget to ask about retroactive benefits. Since your application has been pending for a year, they should backpay from the application date. Make sure they don't try to reset the clock because of their error!

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Thank you for mentioning backpay! I hadn't even thought about them potentially resetting the clock. I'll definitely bring this up in my next congressional inquiry. My rep's office said they'd check again in a month, but maybe I should ask them to follow up sooner.

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THE WHOLE SYSTEM IS RIGGED ANYWAY!!! These tiny COLAs don't even come CLOSE to covering real inflation!!!!! I got a pathetic 3.2% this year while my rent went up 12% and groceries up AT LEAST 20%!!! They use some bogus calculation that ALWAYS underestimates the REAL cost increases seniors face!!!! They don't care about us AT ALL!!!!

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this is so true. my medications went up way more than my ss check did

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Thank you all for the helpful information! So to make sure I have this straight: 1. When I start benefits in April 2025, my payment will already include the 2025 COLA that was applied in January 2. In January 2026, I'll receive the 2026 COLA increase like everyone else 3. I don't have to be on benefits for a full year to get a COLA increase This is really reassuring to know for my retirement planning. I appreciate everyone's expertise!

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You've got it exactly right! Good luck with your retirement planning.

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so ur ltd insurance stops at 67 and then u just get ss? does that mean ull get less money each month? that sounds scary

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Yes, my monthly income will go down when the LTD stops. That's why I'm trying to figure out if there's any way to maximize my Social Security benefits! If I can get even a small amount from the ex-spouse benefit, it would help.

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Make sure you look into Medicare too if you haven't already. Since you've been on SSDI for 2+ years, you should already have Medicare Parts A and B, but it's a good time to review if your plan choices are still the best for you as you transition to retirement. Sometimes people don't realize they have different options once they're past 65.

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That's a good reminder - I do have Medicare from being on SSDI. I have Parts A, B and D right now, and I've been pretty happy with my coverage. Should I be looking at anything specific as I transition to regular retirement?

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This happened to my neighbor and he did get his benefits but they were calculated wrong. Be prepared for a long fight with SSA to get it fixed. Just make sure he files those returns ASAP!

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Thank you all SO MUCH for the helpful advice. I just talked to my brother-in-law and gave him all your suggestions. He's going to file the tax returns this week (he's meeting with an accountant tomorrow). He's also going to apply for Social Security right away and check his earnings record. I'm really worried about those Medicare penalties though - sounds like he's going to be paying extra for the rest of his life. :( I'll update this thread once we know more about how it all works out.

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Good luck to him! And remember that the Medicare penalty isn't the end of the world - better to get enrolled now and pay the penalty than to keep delaying and making it worse. The most important thing is getting coverage!

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Social Security rules are INCREDIBLY unfair to women!!! I was in a similar situation and ended up losing thousands in benefits because of remarriage timing. The system is designed to keep women financially dependent on men and punish us for our choices. It's DISGUSTING how they treat divorced women after decades of marriage. I hope you find a solution but don't expect SSA to be helpful - they just quote rulebooks without understanding real human situations.

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I get your frustration but this isn't really helpful advice for OP's specific situation...

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After reading everyone's responses, I think I need to reconsider my approach. The risks to my current husband's financial security seem too great with the divorce-remarry strategy. I'm going to use that Claimyr service to connect with SSA and discuss my specific situation. Maybe there are options I haven't considered. Does anyone know if there's a financial advisor who specializes in these complex Social Security cases? I'm willing to pay for professional advice given how much money is at stake over our lifetimes.

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To follow up on my earlier comment - I just want to emphasize that you should request a detailed, written survivor benefit estimate from SSA based on your wife's exact earnings record. Online calculators won't handle your GPO situation accurately. HR82 has significant bipartisan support but there are still questions about how it would be implemented if passed. Some versions phase out the offsets gradually rather than eliminating them immediately. Until it's actually signed into law, I'd suggest planning conservatively. Also, make sure you file for the one-time death benefit of $255 if you haven't already.

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Good point about the $255 death benefit - I did apply for that immediately. And I appreciate the caution about HR82. I'm trying not to count on it completely, but it would make such a difference in my case that I can't help but hope. I'll definitely request that detailed estimate from SSA to understand my current situation first.

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Aria Khan

my neighbor works for ssa and she says they're getting training about the wep/gpo changes already, so they must think it's really happening this time! good luck with everything!

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That's interesting but I'd still caution everyone to wait for official implementation. SSA often trains on potential changes in advance, but the final rules can differ from the training. I've seen this happen with past policy changes.

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have u looked into the childhood disability benefit (CDB)? its different than SSI and might be better in your case since your son already gets benefits from dad

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Just to clarify, Childhood Disability Benefits (also called Disabled Adult Child benefits) only apply when a child reaches adulthood and was disabled before age 22. Since the original poster's son is only 4, he wouldn't qualify for CDB/DAC benefits yet. That would potentially be something to consider when he's older, especially if his father passes away.

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Thank you everyone for the helpful responses! I called my local SSA office this morning and got some additional information. They confirmed what many of you said - my son can receive both benefits, but the SSI amount will be reduced. They also explained that the autism diagnosis doesn't affect his current benefits from his dad at all. I'm going to go ahead with the SSI application mainly for the Medicaid coverage. Really appreciate all your help navigating this complicated system!

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That's great news! Make sure you keep copies of ALL his medical records related to the autism diagnosis when you apply for SSI. They'll need documentation from doctors, therapists, and even his preschool if he attends one. Good luck with everything!

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After reading all your responses, I'm leaning toward waiting until my Full Retirement Age now. The combination of the earnings test withholding whole checks plus the permanent reduction for claiming early doesn't seem worth it. I'm healthy and both my parents lived into their 90s, so maximizing my lifetime benefits probably makes more sense. One last question - if I do decide to claim at 65 despite the earnings limit, do I need to notify SSA about my expected earnings when I apply? Or do they just find out when tax returns are filed?

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You should definitely tell SSA about your expected earnings when you apply. They'll use that estimate to determine if any benefits should be withheld upfront. If you don't, and then they discover later (after tax returns are filed) that you earned over the limit, you could end up with an overpayment that you'd have to pay back. You can also contact them during the year if your earnings estimate changes. Being proactive helps avoid surprises. If you work with an employer, SSA will eventually get your actual earnings information through payroll tax reporting.

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why is this system so COMPLICATED??? I swear they make it confusing on purpose so people mess up and lose money. i'm 63 and give up trying to understand when i should file. probably just gonna wait till 70 and avoid this headache!!!

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Same! I don't trust myself to figure this out correctly and every time I call SSA I get a different answer. Waiting till 70 simplifies everything (and gets you the most $).

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my uncle worked for govt and when he died my aunt got like half his pension. she said the paperwork was a mess though. good luck

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One thing nobody mentioned - if you're planning to work while collecting survivor benefits, be aware of the earnings limit! In 2025 if you earn over $24,000 (I think that's the new amount), they'll deduct $1 from benefits for every $2 you earn above that limit. The limit goes away when you reach full retirement age though.

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That's really good to know! I do work part-time and was planning to continue. Does that earnings limit apply to all types of income or just wages from a job?

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The earnings limit only applies to wages from employment or net earnings from self-employment. It doesn't count investment income, interest, pensions, annuities, capital gains, or other government benefits. Also, if your benefits are reduced because of the earnings limit, you'll get credit for those months when you reach full retirement age, resulting in a higher benefit amount later.

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Just curious - did you or your wife pay into Social Security? If your wife didn't have enough work credits that could be another issue. For survivor benefits the deceased needs 40 credits (10 years work) OR if they died young sometimes fewer credits. But SOMEONE needs to have paid in for benefits to be available.

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Yes, my wife worked full-time for over 20 years and had more than enough credits. She was 58 when she passed away and had been contributing to Social Security her entire working life.

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Based on everything you've shared, I believe you have a case worth pursuing. The fact that: 1. You both had legal custody before your wife passed 2. You were actively in the adoption process 3. You were providing support and care for the child 4. Your wife had sufficient work credits All point to a potential approval with proper representation. I'd suggest: 1. Contact the National Organization of Social Security Claimants' Representatives (NOSSCR) to find a qualified attorney 2. Gather ALL documentation showing the timeline of custody, adoption process, and your wife's involvement 3. Request a formal reconsideration rather than just calling again 4. Reference your previous inquiry to maintain the retroactive date I've seen cases like yours succeed, but they typically require persistence and proper legal representation.

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Thank you so much for this detailed action plan. I hadn't heard of NOSSCR before, but I'll definitely contact them to find a qualified attorney. I feel more confident now about pursuing this with the right approach and representation.

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