"Prove You're Disabled"... Again!
The first time I went through the application process for disability benefits, it was too much to handle. I received many denial letters. I had to get a lawyer. I had to testify in front of a judge. And now they want me to do it all over again.
My history with applying for disability benefits
Let me back up.
My type 1 narcolepsy onset in 2017 after a viral illness. I was in college at the time. My symptoms are so severe that I can barely function as a human, let alone in a full-time job.
In 2020, I applied for Social Security Disability (SSI), because I was not eligible for Social Security Disability (SSDI) due to a lack of work history. This is because I became disabled at a young age, before I could accrue enough work history "credits" to qualify for SSDI. College credits don’t count toward work credits, apparently.
Limitations on work capacity
I’ve been working part-time while on SSI ever since then — writing articles, for example, or participating in specialty pharmaceutical patient studies. Why? SSI is not enough money to pay my rent, let alone live on.
The amount of work I am able to do is very small. (My health declines steadily when I work too much.)
However, in just a few years I’ve been able to build up enough work credits to qualify for SSDI! But, oh, if I don’t switch over, I will lose my SSI coverage. No big deal, I thought at first. But soon I realized there would be more than a few hiccups in switching over.
Switching from SSDI benefits to SSI benefits
I would need to redo the entire application process for disability. I initially thought this just consisted of doing a verbal, one-time application process over the phone. I was very wrong.
The representative helping me with my application began asking for my entire medical history since my narcolepsy diagnosis. My stomach dropped. I’ve been through the wringer with switching providers due to medical needs and housing insecurity due to my disability. The list was incredibly long.
I asked the representative, "When will I hear back about my application?"
"In 2 to 3 months, after our doctors have determined your disability status," they replied.
"You know I am on SSI, right?" I asked.
"Yeah," they replied.
Why do I need to prove I am disabled again?
My issue is this: if I went through the disability determination process already, and was determined by the federal government to be permanently disabled by an actual judge of the state, why are they trying to get me to prove I am disabled again less than 3 years later? What does this say about their judgment of their own judgment?
There is a concept in law known as double jeopardy, where an accused person cannot be tried twice on the same charges after being acquitted. What about the other way around? I was determined by the courts to be disabled already. What happened to that judgement? It just disappears?
The benefits of switching from SSI to SSDI
There is also a 2-year insurance waiting period for SSDI. Meaning, when I switch over from SSI to SSDI, it will be 2 years before I can get health insurance.
There are benefits to switching to SSDI. For example, unlike with SSI, there are no asset limits. I would be allowed to have more than $2,000 in my bank account at a time. I could actually build up a savings, little by little. I no longer would have to rely on state health insurance – instead, I would have insurance I could use basically anywhere.
Have you ever had to prove you are disabled? Please share in the comments below.
How important is following a daily routine for managing your narcolepsy?
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