I don't remember all of this b/c I was very ill but I remember pulling the money out of my 401ks and there not being a penalty because of an exemption for disability. I assume I did this before or during the SSDI application process but am not sure. I know that my taxes were different the next year because one place had penalized me and I got it back in taxes.

I wish I could remember this more clearly to help you but I do think there is no penalty. I know I had to have the money since I had absolutely no income while applying (my mom supported me and then I gave her my backpay) and I think my 401k money went toward my mortgage or meds or something.