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

Thanks for explaining the Family Maximum. I wish someone at SSA had explained this BEFORE my wife filed! Yes, our son's benefit is about $850 higher than his SSI was, but the issue is we can't use that money for household expenses that would benefit all of us (like mortgage, utilities, etc.) without it counting as income to him. So we're actually worse off financially despite the higher total household income on paper. Is there ANY way to go back and change our filing strategy at this point? My wife has only been collecting for 6 months.

The SSA really needs to improve how they explain these complex family benefit situations. I see this ALL THE TIME in my work with families who have adult disabled children. The system isn't set up for proper advance planning counseling. For the original poster and others: one strategy to consider is having the lower-earning spouse file FIRST if they're eligible, then the disabled adult child gets benefits from that record (likely lower but still something), then when the higher earner files later, the disabled child can switch to the higher record. This sometimes creates room under the family maximum for better overall household income.

We do have an ABLE account for him, thank you. It helps but doesn't solve the fundamental issue that his money can't be used for general household expenses without counting as income to him. We're basically having to document everything we spend his money on to ensure it's just for him. So frustrating!

LOL I've tried calling them about 20 times in the past two weeks! Either I get disconnected or told the wait is over 2 hours. I can't sit on hold that long while caring for my son.

I had the same problem trying to reach SSA about my benefits! After weeks of frustration, I found this service called Claimyr that got me through to a real person at SSA in less than 20 minutes. They basically wait on hold for you and call you when an agent is available. It was honestly a game changer for me. Their website is claimyr.com and they have a video demo at https://youtu.be/Z-BRbJw3puU showing how it works. Might be worth checking out since you need to speak with someone about something this complicated.

While I understand your frustration, the rules do serve a purpose. The family maximum ensures benefits are distributed fairly across all beneficiaries. The resource limits for disabled individuals receiving SSI-related benefits (like Medicaid) are outdated though - $2,000 hasn't changed since the 1980s despite inflation. The real issue is the lack of benefit planning services. Social Security representatives are prohibited from giving financial advice about when or how to file to maximize benefits. They can only process applications and explain the rules as they apply to your current situation.

That's really helpful, thank you. We're in Illinois - I'll look into what programs might be available here. And I didn't realize we might be able to allocate some household expenses to him with proper documentation. Do you know any resources for learning how to do this correctly?

For Illinois specifically, look into the Community Care Program and the Home Services Program. As for documentation, the key is fair share allocation - if there are 3 people in the household, his DAC funds can cover 1/3 of shared expenses like housing, utilities, food, etc. Keep receipts and maintain a ledger showing these calculations. The Special Needs Alliance website has resources explaining this, and many special needs attorneys offer free initial consultations to explain these concepts.

Yes, this works differently when SSDI is involved versus retirement. The family maximum still applies, but the calculation is different for SSDI. Additionally, when your son turns 18, he'll need to apply for benefits as an adult disabled child if his disability began before age 22. I strongly recommend scheduling a benefit planning session specifically about this transition before you file for retirement. Many Area Agencies on Aging offer free SHIP counseling (State Health Insurance Assistance Program) that includes Social Security benefit planning.