Down the Disability Data Rabbit Hole
A viral TikTok, a new mysterious nonprofit, and Epic's unlikely role in disability access
My dabbling into the unpredictable and increasingly strange intersection of health technology and novel social media formats continues unabated, whether I like it or not, it seems. This past week, someone sent me a link to this viral TikTok video:
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To summarize for those who would like to avoid downloading the app (either out of resistance to the Ellison media hegemony, to thwart our Chinese overlords, or just to avoid doomscrolling in general), the poster explains how disability applications work and how medical records are vital to that process. He then segues unexpectedly to highlight the Texas v. Epic case and hypothesizes that Epic may be the root cause of the pain in the disability process.
The video is actually the fourth in a series that started here, where he documented his experience with medical record retrieval (including a segment where a provider friend appears to access health history in ways that raise questions in the comments about HIPAA compliance). He then interviews two different law firms about their work in medical record release. This niche content represents quite the pivot for this creator, whose prior videos were focused on promotional videos for portable irons, cat food, and beef tallow. They also had relatively low views - he jumped from ~1000 views per video to 500k-14 million for the medical record related content.
However, the base narrative here is simply fiction. The record release bottleneck is the health systems themselves, whose policies and procedures around releasing records vary wildly and are often the actual source of friction in the disability application process.
Beyond that, there are many, many valid or semi-valid critiques of Epic, but disability applications are not one of them! Quite the opposite - Epic is by all accounts leading in terms of facilitating appropriate digital access to medical records for disability application approvals. Their work with the Social Security Administration is something we discussed in late 2024’s “The Disability Data Gap”. As I posited then:
It begs the question - is Epic really the only EHR that does this? If so, why aren’t others? I imagine some might say “our provider customers aren’t asking for this”, but man, talk about doing good in the world and reducing operational burden.
Isn’t it all just somewhat weird?
The main lobbyist for the organization the post mentions (American Association of Disability Justice) is David Camp, who literally co-authored a post with Epic’s Ladd Wiley about the company’s collaboration with the SSA. David is a leading attorney in the disability space and was CEO of National Organization of Social Security Claimants’ Representatives (NOSSCR), a specialized non-profit advocacy group for attorneys and advocates who represent individuals seeking Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) benefits. It’s had a few controversies, though. He recently got a new role as Chief Social Security Strategy Officer at Integrated Benefits, Inc. (IBI), a B2B disability claim management firm.
The video mentions Leland Dudek as the connection point to the AADJ. However, he does not have the organization listed on his LinkedIn. But Dudek was the acting commissioner of the Social Security Administration (SSA) for a brief period at the start of the Trump administration, before being placed on administrative leave and ultimately succeeded by Frank Bisignano. Per Wikipedia and other news articles, his tenure was marked by a series of controversies: allegedly unlawfully cutting Social Security Services, over-sharing SSA data with DOGE, listing immigrants as dead in the SSA database at Kristi Noem’s urging, threats to shut down agency operations, and comparisons of his own role to that of Oskar Schindler.
The site mentioned in several of the poster’s other videos, endinfoblocking.org, was only registered as a domain on February 24 and redirects to an AADJ-owned website.
The American Association of Disability Justice (AADJ) is not the main, well-known association for disability. That’s the American Association of People with Disabilities (AAPD). This group formed (or at least made their website) in early February:
Looking at the address listed here, it’s a random spot in Palm Coast, Florida. The Google Street view is just a highway with no buildings around it:
To be clear, I'm not alleging any sort of malfeasance or bad faith here - just noting that I am so utterly and completely confused by what’s going on, given the org’s provenance is murky and its central claim about Epic appears to be wrong. The rabbit hole has rabbit holes. Tracing things a bit more, the only person listed for the AADJ on LinkedIn is Rachel Buck, who is listed as Executive Director:
Looking at Rachel Buck’s profile, she’s also the Executive Director for another more established non-profit, Advocates, Counselors, and Representatives for the Disabled (ACRD). This happens to be the organization that Leland Dudek joined as Chair of their Advisory Council in January. From that announcement, it sounds like ACRD engaged constructively with Dudek during his tenure (specifically on the identity proofing changes that preserved phone-based claims for disability and SSI applicants), while the American Association of People with Disabilities was actually suing the SSA for the systematic dismantling of Social Security services during that same period. So there is a real working relationship there, forged during the chaos of early 2025, that apparently survived Dudek's departure and blossomed into a formal advisory role.
I am not familiar with the Social Security disability representation space, but it turns out that (like all verticals) it's more nuanced than most people realize. For starters, I was surprised to learn it’s not exclusively the domain of attorneys. The SSA maintains its own accreditation system (including a written exam) that allows non-attorneys (often called “non-attorney representatives”) to appear before the agency on behalf of applicants. This is fairly arcane stuff - you know it’s fairly obscure when there’s not even a Wikipedia page about it!
Organizations like NOSSCR (the organization that David Camp led), the National Association of Disability Representatives (NADR), and the ACRD exist to train and support these non-attorney advocates. The work is detail-intensive: gathering medical records, preparing function reports, coordinating with treating physicians, and navigating the multi-stage appeals process that can stretch across years. A skilled non-attorney rep can be as effective as (if not more effective than) a lawyer, particularly at the initial application and reconsideration stages, where the work is less about legal argumentation and more about ensuring the medical record is complete and properly framed against the SSA’s listing criteria.
Some of the other companies mentioned here are a layer removed. Long-term disability (LTD) insurance carriers are contractually on the hook until SSA approves a claim, so they have a direct financial incentive to accelerate SSA approval, which groups like David Camp’s IBI help with. A layer further, there’s the health insurance angle. Once a client is awarded disability benefits, they eventually become eligible for Medicare. Companies like Allsup Health Insurance Assistance, Planworks, or Disability Planners often have affiliated insurance agencies that enroll these clients into private plans, which is why these groups often sponsor or partner with the non-profit organizations.
It is a wildly complex space, but there’s no denying it is really important and meaningful work! Which makes the AADJ situation all the more puzzling. The underlying issue the AADJ is nominally raising isn't crazy. The disability application process is a disaster. The documentation burden falls almost entirely on claimants who are, by definition, impaired in their ability to navigate bureaucratic complexity. The SSA's systems are ancient, and wait times are punishing. These are real problems with real human stakes.
It’s challenging to come up with a hypothesis for what’s really going on here. The work Epic did with the SSA (as well as other initiatives like TEFCA Individual Access Services) seems to help the work and missions of the organizations involved here. If I had to construct a theory, it would center perhaps on the economics of disability representation itself. Both attorney and non-attorney representatives earn fees tied to successful claims, fees that are predicated on the process being difficult enough to require professional help. So if you want to go full tin foil hat here, perhaps that’s an angle to pursue. But it doesn’t math out for me - arguing against information blocking as a means to take down Epic to keep friction in the system feels far too convoluted and implausible.
Another thesis might be that the law firms or other entities involved were affected by the Epic v. Health Gorilla lawsuit. If they previously had easy access to health data via one of the defendants and it was cut off, that might explain some of the anti-Epic animus here. It’s another wild angle, but if accurate, it would suggest a universe of actors with a financial motive to go after Epic here.
Occam’s Razor might be necessary here, then. Health IT has always faced a power asymmetry: the people most affected by these systems are rarely the ones in the room when policy gets made. The simpler and more charitable read is thus that a loosely connected set of actors (some well-intentioned, some opportunistic, some just confused) picked a common enemy in a system that genuinely deserves scrutiny, and the frustrated internet did the rest.
So maybe the real story here is just the creator whose prior content centered on hyping free samples, now shaping how millions of people understand federal disability policy. He's not wrong that the process is broken, even if the villain he's identified probably isn't the right one.
This continues to baffle me. Excellent investigative journalism! I wonder if we'll ever get some true answers. This has the makings for a documentary.