Social Security wrongly labeled my husband as disabled due to Fragile X carrier - do I need to correct this?
I just noticed something confusing on my daughter's Social Security paperwork. My 20-year-old daughter has severe Fragile X syndrome and receives disability benefits. On her SS paperwork listing household members, they labeled my husband as 'disabled' too - but he's completely fine and has no disabilities whatsoever. So I called SSA and told them it was a mistake. But after hanging up, I suddenly realized - wait, my husband IS technically a carrier of the Fragile X pre-mutation (confirmed through genetic testing years ago). Our daughter's genetic doctor explained she inherited Fragile X from him. Now I'm freaking out that I might have given SSA wrong information. Does being a genetic carrier of Fragile X count as 'disabled' in SSA's system even though he has zero symptoms and functions 100% normally? Should I call them back and explain the genetic carrier situation? I don't want to mess up my daughter's benefits by 'correcting' something that wasn't actually wrong!
14 comments
Join the conversation
Nasira Ibanez
Don't worry too much about this. Being a genetic carrier of a condition isn't the same as being disabled under Social Security's definition. SSA defines disability as being unable to perform substantial gainful activity due to a medical condition. If your husband works normally and has no symptoms affecting his ability to work, he's not disabled in their eyes regardless of his carrier status. The labeling was likely a clerical error in their system. You did the right thing correcting it.
0 coins
Hugo Kass
•Thank you for clarifying! That makes sense. I was just worried I might have caused problems with my daughter's benefits by 'correcting' something that maybe wasn't wrong. So even though medically he's a 'carrier,' that's completely different from being disabled for SS purposes, right?
0 coins
Khalil Urso
im in a similar situation with my son who has a genetic condition. SSA has all kinds of weird codes and categories in there system that dont always mean what we think they mean. the "disabled" label could just be some internal thing that has to do with him being related to a disabled beneficiary or something. i wouldnt worry about it too much as long as your daughters benefits are coming through ok!!!
0 coins
Hugo Kass
•Thank you! That's a good point - maybe it's just some internal coding thing I don't understand. Her benefits have been coming through fine so far.
0 coins
Myles Regis
Just to add my experience - I once spent WEEKS trying to correct what I thought was an error on my son's paperwork. Turned out it wasn't actually an error but just SSA's weird internal categorization. I'd recommend calling them back just to double-check though.
0 coins
Brian Downey
•I'll second this recommendation to call back. When dealing with SSA, it's always better to make sure everything is correct in their system. However, the wait times to reach an agent can be incredibly frustrating. I recently discovered a service called Claimyr (claimyr.com) that helped me get through to a live SSA agent without the usual hours-long wait. They have a video showing how it works: https://youtu.be/Z-BRbJw3puU. It saved me so much time when I needed to clarify some confusing information on my brother's disability paperwork.
0 coins
Jacinda Yu
This is a good question about SSA categorization. From my experience working with families navigating disability benefits: 1) SSA's definition of disability is very specific and based on functional limitations that prevent substantial gainful activity (SGA). 2) Being a genetic carrier without symptoms doesn't meet SSA's disability definition. 3) However, SSA sometimes uses internal codes for family relationships to beneficiaries that can appear confusing on paperwork. 4) The most important thing is that your daughter's benefits are processed correctly. I'd recommend calling back to clarify, but explain the genetic carrier situation clearly so they understand the distinction. This won't affect your daughter's benefits as long as her disability determination remains unchanged.
0 coins
Hugo Kass
•Thank you for such a thorough explanation! That really helps me understand the difference between medical terminology and SSA's specific definitions. I'll definitely call back to clarify this.
0 coins
Landon Flounder
DONT CALL BACK!!!! Every time you contact them you risk them "reviewing" the case and potentially cutting benefits!! I've seen it happen to my cousin's family. They called to fix what seemed like a minor paperwork issue and suddenly they were doing a full review and suspended benefits for 3 months during the process!!
0 coins
Nasira Ibanez
•This is somewhat misleading advice. While it's true that contacting SSA can sometimes trigger reviews, they have scheduled review periods anyway. Correcting erroneous information is important and won't automatically trigger a disability review. Letting errors persist in the system could potentially cause bigger problems down the road.
0 coins
Myles Regis
my husband has diabetes and SSA has him labeled as disabled even though he works full time and has never received benefits. when i asked about it they said its just how their system categorizes certain medical conditions even if the person isnt functionally disabled or receiving anything. might be similar for genetic stuff?
0 coins
Jacinda Yu
•This is an important point. SSA's internal categorization doesn't always align with how we understand disability in everyday life. Having a medical condition noted in their system doesn't necessarily mean they consider someone "disabled" for benefit purposes. It's likely just part of their family medical history tracking, especially since genetic conditions and family relationships are relevant for certain benefit determinations.
0 coins
Callum Savage
I think ur overthinking this tbh. as long as ur daughters checks keep coming its fine
0 coins
Hugo Kass
•You're probably right. I just panic about anything that might affect her benefits!
0 coins