do your kids live with you full time? my friend has 50/50 custody and her ex gets half the kids benefits check which seems unfair since hes not disabled

One more thing to be aware of - if you're also receiving SSI (Supplemental Security Income) in addition to SSDI, the children's auxiliary benefits could potentially affect your SSI amount. This is because children's benefits might count as deemed income in certain situations. However, if you're only receiving SSDI and not SSI, then this isn't a concern.

I really appreciate everyone's help! It sounds like since my husband's SSDI is already higher than what he'd get as a spousal benefit (half of my amount), there's no additional money available to him right now. I'm glad I asked because now I understand how the system works. And I learned about survivor benefits too, which is important for our future planning.

does anyone know if this works the same if ur collecting a government pension? my wife gets teachers pension and i heard theres some offset or something

my cousin has brain cancer too and got approved in just 3 weeks with compassionate allowance! make sure they check that box on the application its super important. also he should apply for the medicare too even though theres a waiting period still better to get it started now.

For the appointment, your brother should bring a letter from the treating physician that includes: 1. Specific diagnosis (including ICD-10 code if possible) 2. Prognosis and expected duration of disability (must be at least 12 months) 3. Current treatment plan 4. Specific statement about inability to work This will significantly speed up the process. The Compassionate Allowance program for brain tumors typically processes in 30-60 days instead of the usual 3-5 months, but having complete documentation from the start can cut that time down even further. Also, be aware that the first SSDI payment won't arrive until 6 months after the established disability onset date due to the mandatory waiting period. The onset date is typically set as the date of diagnosis, so that waiting period has already started.

One more thing to consider: the lawyer should be willing to withdraw if they don't think they can win your case. Be wary of anyone who promises they can definitely win - honest attorneys will tell you your odds based on your specific situation. Also ask if they'll handle your case personally or if you'll be working primarily with paralegals.

I forgot to mention: once you hire a lawyer, make sure they get ALL your medical records, not just from specialists. My general doctor had notes about my fatigue and cognitive issues that ended up being crucial evidence. Also, if you've been hospitalized for your condition, those records are extremely important.

not sure if this helps but I had same issue last year. what finally worked was sending a fax (yes a fax in 2025 lol) to the IRMAA processing center with my SSA-44 form and all my docs. got fixed in 2 weeks after months of calling.

One more tip that might help others reading this thread: If you're planning to retire or expect a significant income drop, you can be proactive about IRMAA. File the SSA-44 form as soon as the life-changing event occurs rather than waiting for the IRMAA notice. This often prevents the higher premium from ever being applied in the first place. For those already dealing with an IRMAA issue, persistence is key. Document every contact with SSA (date, time, representative name if possible) and keep copies of everything you submit. If visiting your local office, arrive at least 30 minutes before opening to minimize wait times.