Thread by @K_Bishof

📢 PSA as the first round of people with #LongCOVID go through the “Continuing Disability” review process with the SSA.

When many of the first people who were #DisabledbyCOVID applied for SSDI, they applied under Long COVID and likely a handful of other diagnoses and symptoms. However, at this time there was no definition for Long COVID yet. There was no directive to SSA for reviewing Long COVID applications. We were lucky we got on, as many are still waiting or unsuccessfu.

Since applying to the time of “continuing disability” (which can vary person to person) the list of issues, conditions, symptoms, limitations, and medications (as well as their side effects) has grown significantly for the majority of people with Long COVID, which is also recognized as a progressive disease.

This is important ⬇️

SSD sends your application to a local office. This offices job is to compile your paperwork for the “medical reviewer.” HOWEVER, they ONLY considers your medical records from the initial condition(s) you were approved under. So…while you may have many more issues and limitations since initial filing, they are NOT CONSIDERED until you are denied continuing eligibility, then they dive into “new” issues. This delays, causes much more harm to patients and does not capture the very definition or reality of Long COVID.

THE RESPONSE TO PROVIDE (because if you don’t, your medical reviewer will not receive ALL of your medical records, and only those related to your initial filing).

“I was approved under Long COVID at a time when a definition did not yet exist. Long COVID now has a definition adopted by HHS (NASEM). That definition, along with others from the CDC, and SSA’s own guidance reflect Long COVID as a condition that can encompass many conditions and symptoms after a COVID-19 infection. Long COVID is also noted as a progressive disease which highlights the additional conditions and symptoms I have developed. Therefore, all conditions and issues for which you are considering to be “new” since my initial disability filing of Long COVID, should fall still fall under Long COVID.”

This ideally could help avoid uninformed local offices from failing to collect and provide all relevant medical records that may result in a denial of continuing disability (or prolongation of the process and the stress that comes with such).

What should you prepare and provide? ⬇️

- a bullet point list of your diagnoses, symptoms, medications and their side effects, your clinicians, healthcare systems, hospitals, labs, imaging
- the one pager NASEM definition
- the two pages SSA Long COVID as a disability guidance
- CDC website pages that describe conditions and symptoms that can be part of Long COVID
*highlight the exact area it discusses multiple diagnoses and symptoms and the potential to be progressive to draw their attention to this argument*

Hope this helps someone out there.

Resources ⬇️
NASEM Long COVID Definition One Pager: nap.nationalacademies.org/resource/27768… (Full Report: nationalacademies.org/read/27768/cha…)

SSA Guide: ssa.gov/disability/pro…

CDC: cdc.gov/long-covid/abo…

It is also important to know that you can upload documents on your SS portal. Make sure anything you are uploading is going under the “Claimant Medical Correspondence” (something like that) otherwise your “local office person” and “medical reviewer” will never see it.

I would save the provided resources as a pdf should they someday disapear. 🫶