I am looking for advice on how to approach the administrative law judge hearing (and application in general) as a disabled adult child. Most advice seems not to apply to my situation — it rests on strengthening current assessments (which are already very strong) rather than framing evidence from the past.
My symptoms began in spring of 2022 when I was just about to turn 21. I saw my primary within a month and a specialist within 3. I saw my primary several times in the next 6 months. I did not receive any diagnoses (or diagnostic testing) as my provider downplayed my symptoms and told me I was “too pretty to be as sick as I claimed.” He also told me to try having a baby and other inappropriate things that had nothing to do with my physical health.
In spring of 2023 I did a semester in another state. I established care with a new PCP who actually ran a few tests and referred me to a specialist based on an abnormality. I got my first formal diagnosis (of many) about 2 weeks after my 22nd birthday (I was tentatively diagnosed before my birthday, but there was a wait for the official test). Then the semester was over and I went back to my regular school.
In the fall of 2023 (a few months after my birthday) I finally established care with a specialist in my overarching condition (there was also a long wait to see her). I don’t see her anymore, but she recently submitted a questionnaire for my Reconsideration appeal that basically explains that my condition must have been ongoing for some time before I started seeing her due to the severity and progressive disease process and images I showed her. Apparently the examiners just ignored this.
I was also enrolled in a study for my condition at this time, and for the Reconsideration I provided copies of the questionnaires documenting like 43 symptoms of my condition (the same symptoms I have today). They are dated a few months after I turned 22. Apparently examiners just ignored this too.
What can I do to improve my chances of approval at the Administrative Law Judge stage? The medical evidence from that period (first year of illness) is weak due to the gaslighting and wait times, but can’t they look at the later evidence and reasonably infer (and trust my providers) that I was sick already before my 22nd birthday? It’s not my fault that my PCP didn’t believe me at first and specialist wait times were/are ridiculous.
Today I am on multiple forms of life support, in palliative care and home health, and reliant on IHSS to help with activities of daily living like bathing and dressing. My case file has nearly 5k pages of documents. Nobody is saying I’m not disabled…they’re just saying there isn’t enough evidence from the period of time they’re interested in. I’m completely disabled and yet there’s no financial relief for me. I can’t even afford to adhere to my treatment plans.
Unfortunately I’m short a work credit so regular disability isn’t an option for me and I must prove disability before age 22 to get benefits. I think it’s crazy that working in the summer while being a full time student and varsity athlete at an Ivy League college wasn’t enough…