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Social Security family benefits shock - disabled adult child benefits reduced my spousal SS benefits to zero

I'm still reeling from what happened when I applied for Social Security last month. My wife started collecting her retirement benefits about 6 months ago (she was the higher earner). Our adult son with severe autism was receiving SSI, but as soon as my wife filed, Social Security automatically transferred him to SSDI as a Disabled Adult Child (DAC) under her record. Nobody warned us this would happen! Here's where it gets worse - I worked sporadically over the years as I was our son's primary caregiver. I always thought I'd get my small retirement benefit PLUS a spousal benefit to supplement since my wife earned so much more. Well, guess what? Our son's DAC benefit basically took what would have been my spousal portion. I only qualify for my own tiny benefit ($780/month) and NOTHING from my wife's record. Now we're stuck in this weird situation where our son receives a higher benefit ($1,950/month), but it can ONLY be used for him, and he still has the $2,000 resource limit we have to monitor constantly. We have to spend down his money each month while we're struggling. Our retirement projections are completely destroyed. We assumed we'd have my benefit plus spousal supplement PLUS his SSI. Instead, we have just my small benefit and his DAC money that can't be used for household expenses. I doubt many couples are in this exact situation, but if you have a disabled adult child and are planning retirement, PLEASE look into this before filing! The family maximum is a real thing and Adult Disabled Children can eat up benefits you thought would be yours.

As someone completely new to navigating Social Security benefits, this thread has been both incredibly educational and deeply concerning. The complexity of these family maximum rules and their devastating impact on caregiving families like yours is shocking. What really troubles me is how the system seems to punish families for making sacrificial choices to care for disabled loved ones. You gave up career opportunities to be your son's primary caregiver, which already reduced your lifetime earnings, only to discover that his disability benefits would eliminate your expected spousal benefits entirely. It feels fundamentally wrong that caregiving families face this double financial penalty. The lack of proactive counseling from SSA is particularly frustrating. They have all the data needed to predict these family maximum impacts, yet families are left to discover these consequences after it's too late to adjust their filing strategies. This seems like a basic service failure that could be fixed with better systems and policies. I'm curious - have you found any resources or advocacy groups that are pushing for reform of these rules? It seems like stories like yours need to reach policymakers who could require SSA to provide mandatory benefit impact counseling for complex family situations before any applications are processed. Thank you for sharing your experience and educating the rest of us about these hidden pitfalls.

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You've really hit on something important about how caregiving families get overlooked by these benefit rules. As someone just joining this conversation, I'm struck by how many people here have similar stories of being blindsided by family maximum calculations. What's particularly eye-opening is learning that SSA representatives are actually prohibited from giving strategic planning advice - they can only process applications and explain rules after you're already locked in. That seems like a fundamental flaw in how the system is designed to serve families. The idea of mandatory benefit impact counseling for complex family situations makes so much sense. If the system can automatically detect when someone has a disabled adult child who will be affected by family maximum rules, it should be required to flag that and provide comprehensive planning information before any irreversible filing decisions are made. I'm wondering if there are disability law organizations or caregiver advocacy groups that could help amplify these stories? It seems like we need a coordinated effort to document how these rules are affecting real families and push for systemic reforms. The current approach of leaving families to discover these consequences after the fact is simply unacceptable.

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As someone new to this community, I'm absolutely appalled by what you've experienced. This is a perfect example of how our Social Security system fails the most vulnerable families - those who have sacrificed to care for disabled loved ones. The fact that you spent years as a primary caregiver, which naturally limited your own earnings, only to then discover that your son's benefits would completely eliminate your spousal benefits feels like a cruel double penalty. You did everything right by caring for your family, and the system punished you for it. What's most frustrating is that SSA had all the information needed to warn you about this outcome before you filed. The automatic transfer of your son from SSI to DAC benefits shows their systems can detect these complex family situations - yet there's no mechanism to alert families about the financial implications beforehand. This thread has been incredibly eye-opening for me about these hidden pitfalls in Social Security planning. Your willingness to share this painful experience could prevent other caregiving families from falling into the same trap. Have you considered reaching out to organizations like the National Alliance for Caregiving or disability advocacy groups? Stories like yours are exactly what's needed to push for policy reforms requiring better disclosure and planning support for families in these situations. Thank you for educating all of us about these issues - no family should have to discover these consequences after it's too late to plan differently.

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So glad you were able to get this resolved! It's frustrating that the system flagged your payment because of the previous fraud incident - you'd think they'd have better ways to verify without causing stress to beneficiaries who are already victims. The separate bank account idea is brilliant too. Thanks for updating us on what happened - this thread will be really helpful for others who run into similar issues.

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This whole situation highlights a major problem with SSA's fraud prevention system - it seems like once you've been a victim of fraud, you're more likely to have future payments flagged and delayed. It's almost like they're punishing you for being victimized in the first place! I'm glad you got it sorted out with the Claimyr service, but it shouldn't take a third-party service to get basic answers about your own benefits. The fact that they can flag payments for "verification" without any notification to the beneficiary is really concerning, especially for people who depend on that money for basic living expenses.

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This is such great news! I'm so glad you found a benefits counselor who could walk through the numbers with you. The 20 hours/week plan sounds very reasonable and gives your son a real chance to build work experience without jeopardizing his benefits. One thing I'd add - make sure to keep detailed records of his actual hours and wages each month, not just what's planned. Sometimes retail schedules can fluctuate, and you want to make sure you're tracking if he accidentally goes over in any given month. Also, don't forget to report his work activity to SSA proactively, even though he's staying under the limits. It's better to over-communicate than have them think you're hiding something later. Good luck to your son with his new job opportunity!

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This is such wonderful news! I'm so happy to hear you found a benefits counselor who could help you navigate this complex situation. As someone new to this community, I've been reading through all the responses and learning so much about DAC and SSI transitions. Your approach of being proactive and getting professional guidance before your son starts working seems really smart. The horror stories shared here about people losing benefits and facing overpayment demands are scary, but it sounds like you're taking all the right steps to avoid those pitfalls. I hope your son enjoys his new job opportunity at the grocery store! It's wonderful that you're encouraging him to work while being so careful to protect his benefits. Please keep us updated on how it goes - I'm sure other parents in similar situations would benefit from hearing about your experience.

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As a newcomer to this community, I've been following this thread with great interest since I'm facing a similar situation with my own adult daughter who has disabilities. The information everyone has shared here is incredibly valuable. I wanted to add one thing that might be helpful - when you do connect with SSA (hopefully through that Claimyr service), ask them about getting a written confirmation of your son's work plan. Some offices will provide a letter stating that working X hours at Y wage should not affect benefits, which can be helpful documentation if any issues arise later. Also, I noticed several people mentioned the importance of keeping detailed records. Consider setting up a simple spreadsheet to track his monthly earnings, hours worked, and any communications with SSA. This has been a lifesaver for families I know who've had to dispute overpayments or other issues. Thank you to everyone who shared their experiences - both the success stories and the warnings. It's clear this system requires careful navigation, but it's encouraging to see that with the right preparation and professional guidance, it is possible for our kids to work while maintaining their benefits.

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Welcome to the community! Your suggestion about getting written confirmation from SSA is excellent - I wish I had thought of that when we were starting this process. Having something in writing would definitely provide peace of mind and protection if questions arise later. The spreadsheet idea is also really smart. We've been keeping paper records but a digital tracking system would probably be more organized and easier to reference if needed. Do you have any specific columns or categories you'd recommend including in the tracking spreadsheet? It's so helpful to have other parents going through similar situations. This thread has been a goldmine of practical advice that you just can't get from the official SSA materials. Thanks for adding your insights!

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I work as a disability advocate and deal with SSA systems regularly. What you experienced is unfortunately common - there's a huge inconsistency in training among SSA representatives. The rep who told you it was "impossible" was completely wrong. Here's exactly what you need to do: 1. Log into your my Social Security account at ssa.gov 2. Look for "Replacement Documents" on your main dashboard 3. Click "Get Your 1099/1042S" 4. Your SSA-1099 should be available for download as a PDF For your daughter, since you mentioned she receives benefits on your record, you should see a section called "Benefits I help manage" or similar wording if your Representative Payee status is properly set up in their system. If you don't see this section, you'll need to contact SSA to update your payee status in their computer system. Pro tip: Once you access the forms online, you can also set up text/email notifications for when new documents are available, which eliminates the mail delivery issue entirely. The identity theft concerns you mentioned are very real - I've helped several clients deal with stolen SSA documents.

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Thank you so much for the detailed instructions! As someone who works with SSA systems professionally, your explanation gives me a lot more confidence. I'm going to follow these exact steps right now. It's really frustrating that there's such inconsistent training - after waiting over 4 hours on hold, the last thing you expect is completely incorrect information. I'll definitely look into setting up those notifications too once I get access working. Really appreciate the help!

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I'm going through this exact same situation right now! My mail gets delivered to the wrong address at least once a month, and I'm terrified about my SSN being on documents just sitting in someone else's mailbox. Reading through these comments, it sounds like multiple people have confirmed you CAN get the 1099 online through the MySocialSecurity portal. That SSA rep definitely gave you wrong information - probably just didn't want to take the time to help you properly after you waited 4+ hours! I'm creating my online account today so I can avoid the mail issue next year. Thanks for posting this question because I had no idea this was even an option. The fact that they're still mailing out documents with full SSNs visible in 2025 is crazy when identity theft is such a huge problem. Hope you get it sorted out! Let us know if the online method works for both you and your daughter's forms.

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You're absolutely right about how crazy it is that they're still mailing documents with full SSNs visible! I'm definitely going to update this thread once I try accessing both forms online. Based on all the helpful responses here, it sounds like the online method should work for my form at least, and hopefully for my daughter's too if my Representative Payee status is set up correctly in their system. It's really frustrating that we had to learn about this option from the community instead of from the actual SSA representative who kept us waiting for hours. Thanks for sharing your similar experience - it's oddly comforting to know I'm not the only one dealing with mail delivery issues and SSA misinformation!

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This thread has been incredibly educational! As someone new to this community, I'm amazed at how much there is to know about Social Security beyond the basics. I wanted to add one resource that helped me when I was researching benefits for my own situation - the SSA's publication "What Every Woman Should Know" (and they have similar guides for different situations). These publications break down a lot of the scenarios discussed here, including ex-spousal benefits, in pretty clear language. Also, for anyone dealing with the phone wait times, I've found that calling right when they open (8 AM in your time zone) or later in the month (after the 3rd Wednesday) tends to have shorter waits. The first few days of the month and around benefit payment dates are absolutely brutal for getting through. Ana, even though your specific question is resolved, I hope you'll share an update after you talk to SSA about your own filing strategy. These real-world follow-ups are so valuable for the community. Thanks for starting such an informative discussion!

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Thanks for those helpful tips, Oliver! The timing suggestions for calling SSA are really practical - I'll definitely keep those in mind. And I appreciate the recommendation about the "What Every Woman Should Know" publication. I'll look that up since it sounds like it covers a lot of the scenarios we've been discussing here. You're absolutely right that I should follow up after I talk to SSA. Even though my original question about my ex is resolved due to his remarriage, I'm sure there will be other details about my own filing strategy that could be helpful for others to hear about. This community has been so generous with sharing knowledge and experiences - it's the least I can do to pay it forward with an update on how the actual SSA consultation goes. Thanks again to everyone who contributed to this discussion. I've learned so much more than I expected when I first posted my question!

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I'm new to this community but wanted to share something that might help others in similar situations. My sister went through almost the exact same scenario about 3 years ago - divorced after a long marriage, ex-husband had remarried, and she was wondering about the benefit implications. What we learned from her SSA consultation was really eye-opening. Even though her ex's remarriage meant he couldn't claim on her record, the SSA representative walked her through several optimization strategies for her own benefits that she hadn't considered. Things like the impact of continuing to work part-time after filing, how Medicare enrollment timing affects things, and even some lesser-known rules about spousal benefits if she ever decided to remarry herself. The consultation took about 45 minutes and was incredibly thorough. They actually ran several different scenarios showing her projected benefits at different filing ages and explained the break-even points. She ended up adjusting her filing strategy based on that conversation and is really glad she took the time to get professional guidance rather than just going with her original plan. So even though your main question is resolved, I'd definitely encourage you to still have that SSA consultation. You might discover options or considerations you hadn't thought of. And thanks for sharing your situation - it's so helpful when people post real examples like this!

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That's such valuable insight, thank you for sharing your sister's experience! It sounds like the SSA consultation was much more comprehensive than just answering the original question about ex-spousal benefits. The fact that they ran multiple scenarios and explained break-even points is exactly the kind of detailed analysis I was hoping to get. I'm particularly interested in what you mentioned about continuing to work part-time after filing and how that affects benefits. I hadn't really considered the implications of that, but since I'm in good health and enjoy my work, I might want to do some consulting or part-time work even after I start collecting benefits. The Medicare enrollment timing aspect is another thing I need to research more. It seems like there are so many interconnected decisions when it comes to retirement planning, and getting professional guidance to understand all the implications makes a lot of sense. Your sister's experience has definitely reinforced my decision to schedule that SSA consultation, even though my main question is resolved. Thanks for taking the time to share that - it's exactly the kind of real-world follow-up that makes this community so helpful!

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