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I'm so sorry for your sister's loss and what she's going through during this incredibly difficult time. Reading through this entire thread has been eye-opening as someone new to this community - the level of knowledge and support here is truly remarkable! Based on everything that's been shared, it sounds like your sister has a very strong case for her Difficulty of Care payments NOT counting toward the Social Security earnings test. The consensus from everyone's experiences seems clear: these payments under IRC Section 131 are specifically excluded from earnings calculations for survivor benefits. I wanted to add one suggestion that might help streamline the process - when your sister submits her formal earnings determination request (which sounds like the best approach based on everyone's advice), she might consider also requesting a case conference or supervisor review at the same time. Sometimes having a more experienced SSA representative handle complex cases involving multiple benefit programs can prevent the inconsistent answers that others have mentioned experiencing. Also, given that she's been receiving these payments for several years before her husband's passing, she has the advantage of established documentation showing this is legitimate ongoing care rather than something new that might raise questions. The fact that she has you advocating for her makes such a difference. These systems are overwhelming under the best of circumstances, let alone while grieving. This community has provided incredible guidance, and I'm confident she'll get the proper documentation she needs to have peace of mind moving forward.
Welcome to the community! Your suggestion about requesting a case conference or supervisor review alongside the formal earnings determination is brilliant - I hadn't thought of that approach, but it makes so much sense to get a more experienced representative involved from the start rather than risking inconsistent answers from different agents. The point about her having established documentation over several years is really encouraging too. It's reassuring to know that the length of time she's been receiving these payments should actually work in her favor rather than complicate things. Thank you for taking the time to read through this entire thread and provide such thoughtful guidance. This community has been absolutely incredible during what started as a really overwhelming and scary situation. Having people like you who can synthesize all the advice and add new perspectives has made such a difference in our confidence level about moving forward. I feel like we now have a comprehensive plan with multiple backup resources, which is so much better than where we started!
I'm so sorry for your sister's loss - losing a spouse while caring for a disabled adult child must be incredibly overwhelming. This thread has been incredibly informative and shows what an amazing support system this community provides! As someone new here, I wanted to add that your sister might also benefit from documenting her caregiving arrangement with photos or videos (with appropriate privacy considerations for her son) showing the home environment and care activities. While this isn't required for the earnings determination, some families have found it helpful to have visual documentation of the caregiving situation if questions ever arise about the legitimacy of the Difficulty of Care payments. Also, since she's been providing this care for several years, she might want to gather any medical records or care plans from her son's healthcare providers that document his ongoing need for this level of assistance. Having medical professionals' assessments that support the necessity of her caregiving role can provide additional validation if needed. The advice everyone has given about the formal earnings determination process sounds like exactly the right approach. It's clear from all the responses that these Medicaid Difficulty of Care payments should NOT count toward the Social Security earnings test, and getting that officially documented will give her the peace of mind she deserves during this difficult transition. Your advocacy for her is so important - having family support while navigating these complex benefit systems makes all the difference in the world.
Welcome to the community! Your suggestions about documenting the caregiving arrangement are really thoughtful and practical. I hadn't considered the value of having visual documentation or gathering medical records that support the necessity of her caregiving role, but those could definitely provide additional validation if questions arise. The idea of having healthcare providers' assessments that document her son's ongoing need for this level of care makes so much sense as supporting evidence. You're absolutely right that this community has been incredible - when we first started dealing with this situation, it felt so overwhelming and confusing, but everyone's shared experiences and advice have given us a clear path forward. The consistency of everyone saying these payments shouldn't count toward the earnings test, combined with all the practical steps for getting proper documentation, has been such a relief. Thank you for adding these additional documentation ideas to our toolkit. It's reassuring to know we can build such a comprehensive record that will protect her benefits and give her peace of mind during this difficult time.
I'm going through the exact same situation right now! Just submitted my retirement application online last week and had that immediate panic when I realized there was no document upload section. Reading through everyone's experiences here has been such a huge relief - it's amazing how many of us go through this same worry! The explanation about SSA already having our birth information from when we originally got our Social Security cards decades ago makes perfect sense, but I never would have thought of it that way. Like you, I applied about 3 months before my target benefit start date, so hearing from multiple people that this timing provides a good safety net is really reassuring. It's funny how something as simple as not being able to upload documents can make you feel like you've messed up the entire application! But clearly this is just how their system is designed to work. I'll definitely be watching my mail for that acknowledgment letter and trying to be patient instead of second-guessing myself. Thanks for asking this question - you've helped calm the nerves of a lot of us first-time applicants!
I'm so glad I'm not alone in this experience! It's really validating to hear from someone who just went through this last week - the timing is so similar to mine. You're absolutely right that not being able to upload documents feels like you've somehow broken the system or missed a crucial step. I was literally googling "SSA birth certificate upload" at 2am trying to figure out what I did wrong! But after reading all these responses, it's clear this is just how they've designed their process to be most efficient. The logic really does make sense when you think about it - why would they need us to re-submit information they've had for decades? I'm definitely going to try to channel this newfound understanding into patience while waiting for that acknowledgment letter. It's so helpful to know there are others of us going through this journey at the same time. Hopefully we'll both be celebrating successful benefit approvals in a few months!
I'm so relieved to find this thread! I literally just went through this exact same panic yesterday when I submitted my retirement application online. Like everyone else, I kept looking for some upload button or document submission section and couldn't find anything. I was convinced I had somehow skipped a crucial step or that the application was incomplete. Reading through all these experiences has been incredibly reassuring - it's clear that SSA's system is actually designed to work this way on purpose. The explanation about them already having our birth information from when we originally got our Social Security cards decades ago makes complete sense, but I never would have thought of it that way without this community's help. I applied about 10 weeks before I want my benefits to start, so hearing from so many people that this timing provides plenty of buffer for any potential document requests really eases my mind. It's amazing how many of us go through this same worry - you'd think SSA would add some kind of explanation on the confirmation page to prevent all this anxiety! I'll definitely be watching my mail for the acknowledgment letter and keeping my birth certificate handy just in case, but feeling much more confident now that I understand how the process actually works. Thanks to everyone who shared their experiences - this community is such a valuable resource for navigating these big life transitions!
I completely understand that panic! I had the exact same experience when I applied a few months ago - spent way too much time looking for an upload button that doesn't exist. It's such a relief when you realize the system is actually working exactly as intended. Ten weeks ahead is even better timing than most people here, so you're definitely in great shape. The community responses in this thread have been incredibly helpful for all of us going through this process. It really would be nice if SSA added a simple explanation on the confirmation page like "Documents will be requested separately if needed" - would save so many people from unnecessary stress! Hopefully your acknowledgment letter arrives soon and puts your mind completely at ease.
I've been reading through this incredibly helpful thread as someone who's also navigating SSDI and creative work. The wealth of real-world experience shared here is amazing! One thing I wanted to add that might help NeonNova and others - consider reaching out to your local Independent Living Center (ILC). Many ILCs have benefits counselors who specialize in work incentives and can provide free one-on-one guidance. They often have more time to spend with you than busy WIPA counselors and can help coordinate between different services. Also, for your gallery situation specifically - you might want to ask the gallery if they're familiar with any other artists who receive disability benefits. Galleries in arts communities often work with artists who have various accommodation needs, and they may have encountered this situation before. Some galleries are surprisingly knowledgeable about payment structuring options. The therapeutic documentation suggestions from Dmitry are spot-on. I'd add that if you have an occupational therapist or any other specialists involved in your care, they might also be able to document how art practice addresses specific functional goals related to your condition. It's clear you're approaching this very thoughtfully, and with all the excellent guidance in this thread plus proper professional counseling, you should be able to find a path forward. The art world needs more artists who understand these systems - you could end up helping other artists in similar situations down the road!
I'm a newcomer here but have been on SSDI for 2 years and just starting to consider selling some of my pottery. Reading through all this advice has been incredibly eye-opening! I had no idea there were so many work incentives and protections available. @NeonNova - your situation with the $8K gallery piece sounds both exciting and nerve-wracking. The advice everyone's given about WIPA counselors, documenting expenses, and getting medical providers to formally note the therapeutic value of your art seems like a solid roadmap. One question I have after reading all this - does anyone know if there's a difference in how SSA treats established artists (like someone with gallery representation) versus people just starting to sell their work? I'm wondering if having a more "professional" art practice changes how they evaluate substantial gainful activity versus someone just selling pieces occasionally at craft fairs. Also, the point about state-level considerations that Melina mentioned really caught my attention. I'm in a state with no income tax, but I hadn't thought about sales tax implications for art sales. Definitely something I need to research before I start selling anything. Thank you to everyone who's shared their experiences - this thread is like a masterclass in navigating SSDI and creative work!
I'm also considering early retirement and this discussion has been incredibly valuable! One aspect I haven't seen mentioned is what happens to any automatic deposits or direct deposit arrangements during the withdrawal process. When you submit Form SSA-521 and they stop your benefits, do they automatically reverse any pending deposits, or do you need to coordinate with your bank separately? Also, for those who've been through this - did SSA provide a clear timeline for when they need the full repayment after your withdrawal is approved? I'm trying to understand if there's flexibility in the repayment timing or if it needs to happen immediately upon approval. The financial planning aspect of having that lump sum ready at the right time seems just as important as making the withdrawal decision itself.
Great questions about the practical logistics! From what I understand, when SSA processes your withdrawal, they'll coordinate the cessation of future payments, but you're typically responsible for initiating the repayment - they don't automatically reverse deposits that have already cleared. They should provide you with specific repayment instructions and a timeline once your Form SSA-521 is approved. I believe you usually have a reasonable window to make the repayment (maybe 30-60 days), but it's not indefinite. Definitely ask about the repayment timeline when you submit your withdrawal form so you can plan accordingly. Having that lump sum readily available in a separate account before you even submit the paperwork might be the safest approach to avoid any timing issues.
As someone who's been following Social Security policy changes closely, I wanted to add that it's worth double-checking the current processing times with SSA before you submit your withdrawal. I've heard anecdotally that processing times have been longer recently due to staffing issues at some field offices. When you call to discuss your withdrawal, ask specifically about current processing timelines in your region. Also, make sure to keep detailed records of all your communications with SSA throughout this process - dates, representative names, reference numbers, etc. This documentation can be invaluable if there are any delays or complications. Given that you're well within the 12-month window with 8 months remaining, you have the luxury of being thorough rather than rushed. The financial benefit of waiting until 67 is substantial enough that it's worth taking the time to do this withdrawal process correctly the first time.
Oliver Schulz
Welcome to the community, Andre! Your experience as a librarian approaching FRA next year sounds very similar to what many of us have navigated. This thread has been such an incredible resource - I'm also new here and can't believe how much clarity everyone has provided! Like you, I was finding contradictory information everywhere and getting increasingly anxious about the rules. The consistent message from all the members who are actually living this reality is so reassuring: absolutely NO earnings limit after FRA that would affect your Social Security benefits. It's amazing how many of us have been unnecessarily limiting our work hours out of fear! I've been doing the same thing with my part-time work. Reading about people like James (3 years of successful experience), Ravi, Fatima, and others who've been working while collecting full benefits really gives me confidence about my own plans. Your library job sounds like it would be a perfect complement to Social Security benefits - the flexibility to take on extra shifts when you want them without worrying about hitting some earnings threshold will be such a relief! Thanks for sharing your situation and adding to this amazing discussion.
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Val Rossi
•Welcome to the community! I'm also new here and just wanted to echo what Oliver said about this thread being such an amazing resource. As someone who's 63 and still learning about Social Security rules, reading through everyone's real-world experiences has been incredibly educational. The consistency in all the stories from people who are actually living this reality - working while collecting full benefits after FRA - really drives home how straightforward the rule actually is. It's almost funny (in a relieving way) how many of us have been overthinking and limiting ourselves unnecessarily! Your library work sounds wonderful, and it's great that you'll have the freedom to take on as many or as few extra shifts as you want once you reach FRA. Thanks for sharing your experience and contributing to what's become such a valuable discussion for all of us navigating these decisions!
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Ethan Moore
As someone who's 62 and just starting to plan for my FRA in a few years, this entire thread has been absolutely incredible! I can't believe how much valuable information everyone has shared from their real-world experiences. Like so many others here, I've been completely confused by all the conflicting information online about Social Security earnings limits. I work part-time as a medical transcriptionist and have been worried sick about whether I'd be able to continue working after claiming benefits. Reading through all of your consistent experiences has finally given me the clarity and peace of mind I desperately needed! The message couldn't be clearer: once you reach your Full Retirement Age, there is absolutely NO earnings limit that will reduce your Social Security benefits - you can work as much or as little as you want! It's amazing (and honestly a bit frustrating) how many of us have been unnecessarily stressing and limiting our work opportunities because of fear and misinformation. I've actually been declining extra transcription projects thinking I'd need to be super careful about my earnings even after FRA. Now I understand that's only a concern BEFORE reaching FRA. Thank you especially to members like James Johnson, Ravi, Fatima, and others who've shared years of successful experience working while collecting full benefits. Your stories are worth their weight in gold! This community has provided more useful, practical information than months of trying to decipher government websites. I'm so grateful to have found this resource before reaching my claiming decision point!
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Carmella Fromis
•Welcome to the community, Ethan! Your story as a medical transcriptionist really resonates with me as someone who's also new here and has been grappling with the same concerns. It's incredible how this single thread has provided such comprehensive clarity from people with real lived experience! Like you, I've been finding so much contradictory information online and was getting really stressed about planning my transition to Social Security. The consistent message from everyone here who's actually living this reality - James with 3 years of experience, Ravi with 2 years, Fatima and her husband, and so many others - really drives home that the rule is genuinely straightforward: NO earnings limit after FRA, period. It's almost shocking how many of us have been unnecessarily limiting ourselves out of fear! Your medical transcription work sounds like it would be perfect to continue alongside Social Security benefits once you reach FRA - the flexibility to take on as many or as few projects as you want without worrying about hitting some earnings threshold will be such a relief. Thank you for adding your voice to this amazing discussion - it's comforting to see so many people finding the same peace of mind from this community's generous sharing of experiences!
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