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Hi there! I'm new to this community and just wanted to add my voice to everyone else encouraging you to call SSA right away. I went through almost the identical situation about 8 months ago - lost my part-time job due to my disability getting worse and completely forgot I needed to report it to Social Security. I was making around $400/month and was terrified I'd get in huge trouble for not reporting it for almost 5 months. When I finally called (after reading posts just like this one!), the representative was actually really understanding. She said transportation and health-related job losses are very common reasons people have to stop working, and they're used to people not knowing all the reporting requirements right away. The key thing she emphasized was that I wasn't trying to hide anything - I was being honest now. My SSI payment went up by about $200/month, and they gave me back payments for all the months I should have been getting the higher amount. It ended up being over $1000, which was amazing since I was really struggling financially. They didn't penalize me at all because it was clearly not intentional fraud. Don't let anxiety keep you from getting the money you're entitled to! You've already waited 4 months - every day you wait is money you're missing out on. The worst part is making that first call, but once you do it, you'll wonder why you were so worried. All these other community members are giving you great advice - take it and call them tomorrow!
@Sarah Jones Thank you so much for sharing your experience! Reading all these success stories from people who went through the exact same thing is giving me the confidence I need to finally make that call. The fact that you got over $1000 in back payments after 5 months really puts things in perspective - I could potentially be looking at similar amounts since it s'been 4 months for me. Your point about every day I wait being money I m'missing out on really hit home. I ve'been so paralyzed by fear of getting in trouble that I didn t'even think about how I m'actually hurting myself financially by not calling. All of you newcomers sharing your recent experiences has been incredibly helpful - it s'clear this is way more common than I thought and SSA is used to dealing with these situations. I m'definitely calling first thing tomorrow morning!
Hi! I'm new to this community and wanted to share my recent experience since it sounds almost identical to yours. I lost my part-time job about 3 months ago (was making $450/month) due to my car breaking down and making my commute impossible with my health conditions. Like you, I completely forgot about needing to report it to SSA until I started panicking about it recently. I finally called them yesterday morning around 8 AM and honestly, it went so much better than I expected! The representative was really understanding when I explained the transportation situation and that I didn't realize I needed to report stopping work (I thought reporting was only for when you START working). She said this happens all the time, especially with people dealing with health issues or transportation problems. My SSI payment is going up by $225/month starting next month, and they're processing back payments for the 3 months I should have been getting the higher amount - around $675 total! No penalties at all because I was honest about when I stopped working and why I didn't report it sooner. My advice: Call them TODAY if possible. Have your last pay stub ready if you still have it, and just explain exactly what happened with your car and transportation. They totally understand these situations. You're missing out on money you're entitled to every month you wait, and based on your $420/month income, you could be looking at around $200+ more per month plus several months of back payments. You've got this!
I'm brand new to this community and just discovered this thread while frantically searching for information about this exact same situation! My partner and I have been providing care for our adult son with autism through our state's developmental disabilities waiver for about 2 years now. We've had the difficulty of care exemption since we started, and our tax preparer told us we were "all set" with the income tax exemption. After reading through all these detailed experiences, I'm now terrified that we may have missed the self-employment tax requirement entirely. What's really striking is how many families here have nearly identical stories - tax preparers who don't understand the distinction, case managers who never mentioned it, and program materials that don't explain it clearly. I'm going to immediately request our Social Security earnings statements and schedule an emergency meeting with our tax preparer this week. Since we're only 2 years in, hopefully we can correct everything through amendments if we've been making this mistake. Thank you to everyone who has shared such comprehensive experiences and advice - this thread has been absolutely invaluable! It's clear there's a major systemic communication problem that's affecting thousands of caregiver families. This information should definitely be highlighted prominently when families first enter waiver programs. I'll keep you all updated on what we discover!
Welcome to the community, Lena! You're actually in an ideal position being only 2 years into this situation - if you do discover you've been missing the self-employment tax piece, you should be able to correct both years completely through amendments without losing any Social Security credits permanently. Your story about the tax preparer saying you were "all set" with just the income tax exemption is unfortunately becoming a very familiar refrain in this thread. It really highlights how widespread the misunderstanding is about IRS Notice 2014-7 and how it only exempts the income from federal income tax, not from self-employment taxes that fund Social Security and Medicare. When you have that emergency meeting with your tax preparer, I'd recommend bringing up the key distinction that several experienced community members have explained here: the difficulty of care exemption creates an income tax exemption but doesn't exempt families from FICA/self-employment tax obligations. You might also want to ask specifically whether they've been filing Schedule SE with your returns for this caregiving income. The fact that you're catching this so early puts you in a much better position than many of us who discovered this issue years later. Definitely start by getting those Social Security earnings statements to see what's actually been recorded - that will give you the clearest picture of whether any corrections are needed. Looking forward to hearing what you find out!
I'm completely new to this community but just found this incredibly comprehensive thread while desperately researching this exact same issue! My spouse and I have been caregivers for our adult daughter with Down syndrome through our state's HCBS waiver program for about 6 months now. We just received our difficulty of care exemption approval, and our tax preparer assured us that we were "completely covered" and wouldn't need to worry about taxes on this income. However, after reading through everyone's detailed experiences here, I'm now deeply concerned that our tax preparer may not fully understand the distinction between income tax exemption and Social Security/self-employment tax obligations. It's absolutely shocking to see how widespread this confusion appears to be - literally every family in this thread has a nearly identical story of being told they were "all set" with just the income tax exemption. Since we're only 6 months in, I want to make sure we get this right from the beginning rather than discovering we've made a costly mistake years down the line like so many others here. Should I be proactive and specifically ask our tax preparer about filing Schedule SE for this caregiving income? Or should I immediately start looking for a specialist who specifically understands disability waiver tax situations? This thread has been absolutely invaluable - thank you to everyone who has shared their experiences and practical advice. It's clear that families entering waiver programs desperately need better upfront education about these tax requirements. The systematic nature of this problem really shows there's a serious communication failure that needs to be addressed at the policy level.
Welcome to the community, Rebecca! You are in such a fortunate position being only 6 months in - you have the opportunity to get this right from the very beginning instead of discovering problems years later like so many of us have experienced. I would absolutely recommend being proactive and specifically asking your current tax preparer about Schedule SE for your caregiving income. Based on all the experiences shared in this thread, the key question to ask is: "Even though this income is exempt from federal income tax under the difficulty of care exemption, do we still need to pay self-employment taxes on it to get Social Security credits?" Many preparers seem to miss this crucial distinction. However, given how widespread the confusion appears to be even among tax professionals, you might also want to get a second opinion from someone who specializes in disability waiver situations. Several community members have had success getting referrals from their local disability advocacy organizations for tax preparers who actually understand these nuances. The fact that you're asking these questions at 6 months instead of 6 years puts you way ahead of most families. You have the chance to ensure your Social Security earnings are properly recorded from day one, which could make a significant difference in your future retirement benefits. Definitely keep us updated on what you learn - your experience could help other families who are just starting their waiver programs avoid this common pitfall!
Isaac, I'm so deeply sorry for the loss of your mother. Having just gone through this exact situation with my father-in-law last fall, I completely understand how confusing and overwhelming it can be to deal with these details while you're grieving. Everyone here has given you excellent guidance - the January 30th payment was correctly issued for January 2025 and absolutely does not need to be returned since your mother lived the entire month. The key now is getting her death reported to SSA quickly to stop any future payments. One thing that really helped us was calling SSA first thing in the morning (we got through around 8:15 AM on our second try). When you call, they'll walk you through everything step by step, and as her daughter, you definitely don't need executor paperwork just to report the death. I also want to echo what others said about reviewing any automatic payments from her account before making the SSA call, just in case the bank places any holds afterward. We learned that one the hard way. Please take care of yourself during this time. You're handling everything exactly right, and this community is here if you need any other guidance. Sending you my thoughts and support.
Thank you so much, Drake. It really helps to hear from someone who went through this exact same situation recently. Your timing suggestion for calling SSA early morning is really practical - I'll definitely try calling around 8:15 AM like you did. I appreciate the heads up about reviewing automatic payments beforehand too. It's comforting to know that others have successfully navigated this process and that I'm on the right track. This community has been such a lifeline during this difficult time, and I'm grateful for everyone's patience and support.
Isaac, I'm so sorry for the loss of your mother. Having worked in estate administration for several years, I can confirm what the community consensus has established - the January 30th payment was correctly issued for January 2025 and does not need to be returned since your mother lived through the entire month. One practical tip I'd add: when you call SSA to report her death, ask them to confirm on the call that no future payments will be issued and get a confirmation number for your records. Also, if your mother had any other federal benefits (like Medicare), SSA can often coordinate reporting her death across agencies, which can save you additional phone calls during this difficult time. The guidance everyone has provided about calling early morning and having her information ready is spot-on. You're doing everything right by seeking clarity on these matters. Take care of yourself, and don't hesitate to reach out if you need any other assistance navigating this process.
Thank you for that professional insight, StarSeeker. The tip about asking for a confirmation number when reporting the death is really valuable - I hadn't thought about documenting that conversation. It's also helpful to know that SSA might be able to coordinate reporting across other agencies like Medicare. That could definitely save time and emotional energy during an already difficult period. I really appreciate everyone sharing their expertise and experience to help guide me through this process. This community has been incredibly supportive.
I wanted to share some additional perspective on this situation. One thing that hasn't been mentioned yet is the importance of timing if your husband does decide to delay his benefits. Since he's already 62 and has health issues, you might want to consider a middle-ground approach - having him file at his Full Retirement Age (66 or 67 depending on his birth year) rather than waiting until 70. This would give you both some security of receiving benefits sooner while still providing a decent survivor benefit for you later. Also, keep in mind that if your husband is still working part-time, his earnings could affect his Social Security benefits if he files before his FRA due to the earnings test. But once he reaches FRA, he can earn any amount without it affecting his benefits. Another consideration - if your husband's health deteriorates significantly, he might potentially qualify for SSDI himself, which could change your overall strategy. SSDI recipients can receive their full benefit amount regardless of age, without the early filing reductions that apply to regular retirement benefits. Given the complexity of your situation with the age difference, health concerns, and your existing SSDI, it really might be worth consulting with someone who specializes in Social Security optimization to run different scenarios and see what works best for your specific circumstances.
This is really helpful advice about finding a middle ground with the timing! I hadn't thought about the possibility of my husband potentially qualifying for SSDI if his health gets worse. His heart condition has been progressing, and if it becomes severe enough that he can't work at all, that could definitely change our whole approach. The earnings test is another good point - he's only working part-time now but still earning enough that it might affect his benefits if he files early. It sounds like waiting until his FRA might be the sweet spot for our situation. I really appreciate everyone's input on this thread. It's giving us a lot to think about and discuss with a professional advisor.
I wanted to add something that might be helpful regarding the conversion from SSDI to retirement benefits. When your SSDI automatically converts to retirement benefits at your Full Retirement Age (67), the amount stays exactly the same, but there's one small advantage - you'll no longer be subject to SSDI's continuing disability reviews. Those reviews can be stressful even when your condition is clearly permanent, so that's one less thing to worry about. Also, regarding getting accurate information from SSA - I've found that visiting a local Social Security office in person (with an appointment) often yields better results than calling. The representatives seem to have more time to look at your specific situation and pull up the relevant rules. Just make sure to bring all relevant documents and maybe even write down your questions beforehand. One more thing about survivor benefits timing - if something does happen to your husband before you reach age 60, you could potentially receive a one-time lump-sum death payment of $255, and if you're caring for his child under 16 (or disabled), you might be eligible for survivor benefits earlier. But given your ages, this probably doesn't apply to your situation.
Thank you for mentioning the benefit of no longer having continuing disability reviews once SSDI converts to retirement benefits! That's actually something I've been worrying about - even though my condition is clearly degenerative and permanent, those reviews are always stressful. It'll be nice to have that hanging over my head removed when I reach 67. Your suggestion about visiting a local SSA office in person is really good too. I've been dreading trying to call them after hearing everyone's horror stories about wait times and getting different information each time. Making an appointment and going in person sounds much more productive. I'll definitely prepare a written list of questions beforehand so I don't forget anything important when we're there.
StarSurfer
I went through this exact process just a few weeks ago after getting married in October! Your certified copy with the county seal is absolutely what you need - SSA considers it equivalent to an original document, so don't worry about that part. I was also frustrated with the online process because it's genuinely misleading - you can't actually complete the name change fully online despite what the website suggests. Here's what worked for me: I ordered a second certified copy from my county online first (cost $22 and took about 5 days), then did a walk-in visit at my local SSA office. I arrived 45 minutes before opening on a Wednesday morning and was 6th in line. The actual process was super quick - maybe 12 minutes total. They looked at my certified marriage certificate and current driver's license, had me sign Form SS-5, and immediately returned all my documents to me. No mailing stress, no waiting weeks to get documents back! Got my new Social Security card in 9 business days. One important thing I learned: don't change your name anywhere else (bank, work, etc.) until SSA processes it first, or you'll create system mismatches that can be a headache to fix. The early morning wait was totally worth the peace of mind of keeping my documents in hand the whole time. Just bring backup ID like your passport - they asked to see mine for verification. Congratulations on your marriage!
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Olivia Martinez
•This is such a comprehensive breakdown of the process - thank you! I'm really glad you mentioned ordering the second certified copy online first, that's definitely what I'm going to do for peace of mind. Your timing of arriving 45 minutes early on Wednesday sounds perfect, and it's reassuring to hear the actual appointment was so quick once you were seen. I had no idea about the importance of doing SSA first before other places - I definitely would have made that mistake! Thanks for sharing such detailed experience and congratulations to you too on your marriage!
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Sophia Gabriel
I just went through this same process about a month ago and totally understand your confusion! The SSA website is really misleading about name changes - you can't actually complete it fully online like they make it seem. Your certified copy with the county seal is absolutely perfect and exactly what they need. I was also nervous about mailing my only copy, so I went in person to my local SSA office. I arrived about 30 minutes before they opened on a Thursday morning and was maybe 12th in line, but it moved pretty quickly once they opened. The actual appointment took less than 10 minutes - they looked at my certified marriage certificate and driver's license, had me fill out Form SS-5 right there, and immediately handed all my documents back to me. No keeping anything, no mailing stress! Got my new Social Security card about a week later. One tip: if you're really worried about your certified copy, you can usually order an additional one online through your county's website for around $15-20. That way you have a backup if anything happens. Also, make sure to bring a second form of ID like your passport - they asked to see mine as verification. The peace of mind of doing it in person and keeping your documents with you the whole time is definitely worth the early morning wait. Good luck with your name change process!
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