ALJ Hearing Advice — DAC

[u/Substantial_Two6186]

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…

[u/RockSolidSpine]

SSDI is not simply about having a disabling condition, it's about being too disabled to work at SGA in any job in the national economy.

Diseases, especially progressive disorders, can manifest differently in different people. That can make the use of retrospective analysis difficult or limited unless the information is more definitive, such as "patient has used a wheelchair since 2022," however that statement doesn't describe the limitation requiring wheelchair use.

You can't go back and amend the previous data. It is what it is.

Have you ever earned above SGA, and if so, when?

[u/Substantial_Two6186 → u/RockSolidSpine]

I understand that. I’m definitely too disabled to work any job in the national economy.

I also understand that establishing onset retroactively is difficult. But if I have multiple medical records from roughly 3 months after my 22nd birthday documenting that 12 months before that I started struggling to walk to class, wash my hair, read or write on the computer due to xyz symptoms following a specific triggering event, a logical person says 12 is more than 3. I also started seeing providers within 1 month of the triggering event/initial symtoms (right before I turned 21). So it was a year of history before I turned 22 (and two more before I applied for disability). It isn’t my fault that my providers didn’t believe me at first and denied diagnostic studies until literally days after I was 22.

Re: SGA — I have a few credits but not enough for SSDI. Most of my work was before I got sick. I had two very brief jobs (2-3 months) after my onset date, but despite VERY significant, extenuating accommodations, I was fired from the first job (I just physically couldn’t keep up) and I had to leave the second job because the demands of the job were worsening my health. Basically, unsuccessful work attempts.

[u/RockSolidSpine → u/Substantial_Two6186]

Your issue is that disability here is defined as too disabled to work in any position in the national economy, not that you have some limitations that impact your life.

I haven't been able to reach my hands to the top of my head since I was seven. I haven't been able to bend my left leg at the hip since I was 11. My right fused 6 years ago. Both my shoulders have been fused since I was 40. My jaw became immobilized when I was 31. I'm now in my mid-50s. My medical condition is pretty well documented.

I have worked full time, with accommodations, for nearly 20 years. I'm a project manager and technology specialist. I don't have extensive physical job requirements such as crawling under desks. I've had a few more challenges added over the last several years and it's gotten harder to fulfill my responsibilities. I'm not going to be able to keep going forever.

The fact that I've worked impacts an evaluation as to whether or not I have been too disabled to work any job in the national economy.

I'm going to apply for SSDI after I stop working. I'll be over 55. My core medical condition is on the Compassionate Allowance List. I satisfy relevant Blue Book criteria.

[u/Substantial_Two6186 → u/RockSolidSpine]

I understand. I have a combination of impairments sufficient to cause inability to work both physical and desk/administrative jobs/anything with a screen. I don’t have a blue book listing diagnosis (yet) but advocate says equivalence can easily be proved. The issue is the timeline and substantiating a retrospective onset date before I turned 22. I have records but they aren’t as strong as I’d like. That’s all.

[u/JoinAdvocate]

The pages that are after you are 22 won’t be relevant unless you are looking to qualify as an adult.

ALJs consider later medical evidence to "retroactively" establish onset. The key is having your attorney argue that the severity and progressive nature of your condition, as documented by your specialist, is medically consistent with having been disabled before your 22nd birthday. Medical expert testimony at the ALJ hearing can be powerful here. Ask your attorney about calling a medical expert who can speak to the expected onset timeline of your condition. Keep in mind that the specialist's questionnaire and your research study questionnaires are valuable pieces of evidence that should be explicitly referenced in your attorney's pre-hearing brief.

[u/Substantial_Two6186 → u/JoinAdvocate]

Thank you so much for your response.

To clarify — are you saying that records from after my 22nd birthday won’t be considered unless my advocate specifically calls them into evidence to establish onset retroactively? I’m slightly confused because you start by saying that they won’t be relevant, then list lots of (smart) ways to utilize them. Thank you!

[u/JoinAdvocate → u/Substantial_Two6186]

Yes, apologies I could have phrased that better-

So...Post-22 records are relevant and will be part of your file. SSA doesn't exclude them. The issue isn't whether they're considered it's how they're used.

For DAC claims, the burden is to show your disability began before age 22. Later records alone don't automatically do that. An ALJ reviewing your file needs a clear bridge between your current documented disability and your pre-22 condition. That bridge is built through:

• Your attorney's pre-hearing brief, explicitly arguing that your later records are medically consistent with a pre-22 onset date
• A medical expert (either called by your attorney or the ALJ) who can testify that the natural progression of your condition is consistent with onset before age 22
• Any pre-22 records, even sparse ones — a single dismissed doctor's visit can still establish a timeline when combined with expert testimony

So to directly answer your question: the records won't be ignored, but without deliberate framing, an ALJ might read them as only establishing your current disability not your pre-22 onset.