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

This is actually a common situation with the Family Maximum Benefit (FMB) rules. When multiple people draw from one earner's record, there's a cap on the total that can be paid. Your disabled son's benefit as a Disabled Adult Child (DAC) gets priority over your spousal benefit in the FMB calculation. The positive side is that your son's benefit is likely higher than his SSI was, and he now has Medicare after 24 months on SSDI/DAC. But you're right that the resource limits still apply if he wants to keep Medicaid (which many disabled adults need for support services SSI doesn't cover). For others reading: if you're in this situation, consider delaying the higher earner's benefits. This increases their benefit amount AND raises the family maximum, potentially allowing more room for spousal benefits alongside the DAC benefit.

omg same thing happened to us!!! daughter with downs got switched to SSDI from my husbands record and we got the whole family maximum thing explained AFTER we already filed. no warning at all. now im only getting like $650 and cant get spousal. its so frustrating!!

Unfortunately, once a beneficiary has been receiving benefits for more than 6 months, they can't withdraw their application. Your wife is just at that cutoff point. You might want to schedule an appointment with SSA to discuss if there are any options available in your specific case. Regarding the resource limits for your son - look into an ABLE account. These special accounts allow disabled individuals to save beyond the $2,000 limit (up to $100,000) without affecting benefits. It might help with managing his funds more effectively.

Have you tried calling SSA directly to discuss your options? They might be able to help.

THIS IS WHY THE SYSTEM IS BROKEN!!! SSA doesn't explain these complicated rules to people before they file, then you're STUCK with bad decisions that affect your whole life! And you can't even get someone on the phone to help fix it. My brother has a similar situation with his disabled daughter and they're struggling to make ends meet because all her money has to be spent just on her expenses with the stupid resource limit. It's like they WANT families to be poor!!

Something that hasn't been mentioned yet - you should look into whether your state has any supplemental programs for caregivers of adult disabled children. Some states offer additional financial support or caregiver stipends that might help offset some of what you've lost in expected Social Security income. These programs vary widely by state though. Also, for your son's funds, consider working with a special needs financial planner who can help maximize how his benefits are used while staying compliant with all the rules. Some expenses that benefit the whole household CAN actually be properly allocated as his share (portion of rent/mortgage, utilities, etc.) with the right documentation.

anyone know if this affects retirement benefits differently than disability? my husband is on SSDI and we have a disabled son who gets benefits as a minor child dependent right now, but I was planning to apply for my retirement next year and now im worried about how this all works

I'm so sorry you're dealing with this situation. As someone new to understanding Social Security benefits, this is incredibly eye-opening and frankly terrifying. The fact that SSA doesn't proactively explain how these family maximum rules work before people file seems like a massive systemic failure. Your story is a perfect example of why we need better benefit counseling services. It's not fair that families have to discover these complex interactions AFTER they've already made irreversible decisions that affect their entire financial future. For what it's worth, your post might save other families from making the same mistake. Have you considered reaching out to your local representatives about this? The lack of proper advance planning guidance from SSA seems like something that needs policy attention, especially given how common these situations are becoming as more families care for adult disabled children. Thank you for sharing your experience - it's helping educate the rest of us about these hidden pitfalls in the system.

This is such an important discussion that highlights a major gap in how SSA handles complex family benefit situations. As someone who works with families navigating disability benefits, I see this scenario far too often - families making well-intentioned decisions without understanding the full implications. One thing I'd add to the excellent advice already given: if you're within that 6-month window (which you barely are), it might be worth having a disability attorney or benefits specialist review your case for any possible options. Sometimes there are nuances in how the family maximum was calculated or applied that could be challenged. Also, for future readers in similar situations - consider having the lower-earning spouse delay filing until after age 70 if possible. This can sometimes create a better overall benefit structure for the family, though it requires careful analysis of each family's specific circumstances. The systemic issue here is real - SSA needs better tools and protocols for explaining these complex interactions before people file, not after. Your experience could really help drive that change if shared with the right advocacy organizations.

This thread is absolutely eye-opening and honestly quite concerning. As someone new to this community, I had no idea these family maximum benefit rules could create such devastating financial impacts for caregiving families. What really stands out to me is how the system seems fundamentally broken when it comes to communication and planning. The fact that SSA has all the data they need to warn families about these consequences but doesn't proactively do so feels like a serious failure of public service. People are making irreversible decisions that affect their entire financial future without understanding the full picture. I'm particularly struck by how this disproportionately affects families who have made sacrifices to care for disabled family members at home. The original poster gave up career opportunities to be a caregiver, only to discover that this choice - combined with their son's disability benefits - would eliminate their spousal Social Security benefits entirely. It's like the system is punishing families for doing the right thing. The policy implications here seem huge. If SSA representatives are prohibited from giving strategic filing advice, then there needs to be some other mechanism - maybe mandatory referrals to independent benefit counselors for complex family situations, or at minimum, clear written disclosures about potential family maximum impacts before any applications are processed. Thank you to everyone sharing their knowledge and experiences here. This is exactly the kind of information families need BEFORE they make these critical decisions.

As a newcomer to this community, I'm absolutely stunned by what you've shared. This is exactly the kind of critical information that families need to know BEFORE filing for Social Security benefits, not after. What strikes me most is how the system seems designed to trap families in these situations. You spent years as a primary caregiver - sacrificing your own career earnings to care for your son - only to discover that his need for benefits would eliminate your spousal benefits entirely. It's deeply unfair that caregiving families face this additional financial penalty. The fact that SSA doesn't proactively warn families about family maximum impacts when they have all the data needed to predict these outcomes feels like a serious service failure. This should be flagged automatically in the system with mandatory counseling before any applications are processed. Your experience highlights a broader policy problem: SSA representatives can explain rules after you're stuck with them, but they're prohibited from helping families strategically plan to optimize their benefits beforehand. We need independent benefit counseling services or at minimum, comprehensive impact disclosures for complex family situations. Thank you for sharing this - your post could prevent other families from making the same costly mistakes. Have you considered reaching out to disability advocacy organizations? Stories like yours could drive the policy changes needed to protect future caregiving families.

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.

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.