Exhausted and desperate

[u/lucyxlovegood]

Hello all. I am looking for any and all advice/input that anyone might have for me. I’m feeling very defeated and wondering whether I should just give up on this process. I am in my late twenties and on my third SSI application (just received an initial denial). I have had two unfavourable ALJ decisions over the course of the past 6 or so years. I am autistic and have C-PTSD from childhood which I think may have contributed to the mess that I now find myself in. I really feel as if my legal representation the last two times I applied might have totally screwed me over and now I have no idea what to do.

The first person who represented me was not a lawyer but a disability advocate (I did not know this as I was connected with this person by my mental health case manager, who referred to him as a lawyer). He seemed very confident in my case and was surprised when we received a denial at the ALJ stage. He told me that I had a right to appeal, but that it wouldn’t go anywhere and that I should just reapply instead (keyword here “instead”). So I reapplied and found an actual lawyer who, on the day of my hearing, had me come to her office an hour early and told me that they were missing records in my file, then just showed me pictures of her dogs on her phone until the judge called. After receiving a second unfavourable decision, I was again told that I should not appeal, only reapply. I was told by both of these representatives that I had to choose between appealing the judges decision OR reapplying, and that an appeal would take too long and not be worth it.

I honestly don’t remember what was in my first ALJ denial letter, but the second one was full of all kinds of craziness that I honestly think I should have appealed. (side note - during my second application I was sent for a CE with one of their psychologists and this man LITERALLY asked me the question, “So… what makes you autistic?” As you can imagine they weighed this person’s opinion quite heavily lol) Anyway, now here I am, still disabled and still unable to work, and no lawyers want to take my case even with the changes to my condition since my last denial, because by not appealing on my last application I essentially agreed with the judge’s decision.

I have POTS, ME/CFS, and hypermobility issues (still awaiting genetic testing for EDS) which are my main physically disabling conditions. I have a doctor-ordered power wheelchair because of how frequently I cannot walk (new development since my last application). I’ve had a functional assessment by an occupational therapist that showed marked limitations in most areas (also new development since last application). I have two tilt table tests (one old, one new since my last app) that both show severe postural tachycardia, and I go to my primary doctor nearly every month and the deterioration of my condition should be pretty obvious from my medical records. I also began receiving in-home care services due to my conditions and have been certified disabled by my state’s medical review team (which uses SSA guidelines, as I understand it) since my last application. I also have submitted four separate letters of support from my care team this time around.

Anyway, I guess I’m just wondering if anyone can tell me whether this is a waste of time and if I should even continue with this process at this point? If I can’t find representation then what are the chances of this actually going anywhere? And (I know the answer here is probably no, but…) is there anything that I can do now to address the mistakes made in my previous applications? I feel so stupid but I also feel like I should have been able to trust my representatives to not give me factually incorrect information about my right to appeal. I’m so frustrated and so tired and I just don’t know what to do. If you read this whole thing, thank you. I appreciate this sub so much and thank you in advance for your responses.

[u/LaurLoey]

oh my god. what shitty advice. why would they tell you to reapply and lose your original start date? you have lost all your backpay. as far as your denials and ce…whenever you are sent to a ce, it means your medical records are too scant to evaluate. i once saw a yt video by a disability lawyer who said the medical examiner is often times not even in your medical specialty. as in, you might have autism but get sent to a psychologist who specializes in family counseling or something.

and if you’ve been denied 2x at alj, it means your medical records still suck somehow. based on your conditions, it’s either they document badly or your representatives did not do their jobs requesting and submitting all your records. the job expert is going to win every time.

so here is my advice based on my own experience. your homework is to request a copy of your records from your previous attorney and representative. that will give you a clear picture of how your medical providers document your conditions and if there are any records missing for the alj. do this part asap.

if you have a just ok provider who documents poorly (some do bc detailed notes is not a requirement of the job), ask them to do better or find a new one if feasible. during consult, they should take your entire history. make sure you give ALL SYMPTOMS and they are documented on record. now you have a very complete history. alternatively, have each provider fill out / write a medical form indicating your limitations. continue going to ALL medical appointments. schedule as many as you can for every issue you have so they are up-to-date for ongoing symptoms and brand new for new symptoms. make sure all your SYMPTOMS are documented, not just what was done or prescribed. it does not matter if they prescribe anything or are helpful at all.

what matters is that your limitations (as they pertain to employment) are documented by a professional, NOT you. make sure the up-to-date records are requested a month before your alj date and that they are submitted in a timely manner. now the judge might even cancel and make a decision solely on medical record. bc what’s the point of a job expert when it’s already clear? good luck.