Disability assessment process

Brandon Newman95 said:Forget about them accepting stuff from private doctors. It won't get resolved. Everyone on here gave you advice, but you're doing things your own way. Go find other doctors. They aren't going to respect anything coming from a private practice.
Have you even tried talking to a doctor at a public hospital? Who says they won't listen? If they won't, just switch doctors.
People on this forum were trying to help you. Private documentation isn't going to count.
Just call them up and ask. Then you'll hear the answer for yourself.
Good luck with the AMA.
And if this disease is actually rare, but clearly obvious, maybe sharing your experience could actually help someone else out there.

.

Jesus :'(

What do you mean nothing will be resolved? What exactly is the Center for Artificial Intelligence going to do—not call me at all, or just tell me to go see a public doctor? Or are they just going to ignore my files entirely?

Kyle Reed30 said:.

Jesus :'(

What do you mean nothing will be resolved? What exactly is the Center for Artificial Intelligence going to do—not call me at all, or just tell me to go see a public doctor? Or are they just going to ignore my files entirely?

They might call you, or they might not. They didn't call my mom, for instance. And they don't exactly refer people to public doctors.
At the initial review board, whoever happens to be sitting there that day—any specialist, really—is the one who looks over your paperwork. In my mother's case, she's an oncology patient, and her files were reviewed by an epidemiologist. Naturally, the request was denied.

mellowskipper said:They might call you, or they might not. They didn't call my mom, for instance. And they don't exactly refer people to public doctors.
At the initial review board, whoever happens to be sitting there that day—any specialist, really—is the one who looks over your paperwork. In my mother's case, she's an oncology patient, and her files were reviewed by an epidemiologist. Naturally, the request was denied.

So what am I supposed to do then??

How am I even meant to know if they rejected me without saying anything? And how do you even restart the process if the private providers turn you down?
??????

Kyle Reed30 said:So what am I supposed to do then??

How am I even meant to know if they rejected me without saying anything? And how do you even restart the process if the private providers turn you down?
??????

They’ll submit the findings and their official opinion to the American Medical Association (which will explicitly state whether they denied you or not), and then some social worker or legal rep from the American Medical Association who’s putting the decision together will give you a call to come in.
If they do deny you, there's an appeals process. All the specific instructions on how to handle that will be laid out right there in the official decision notice.

No private provider is going to take on a complex illness if there isn't a clear profit margin in it; frankly, they don't have much skin in that game.
I'll be honest, I've completely lost the thread of your argument.
If a case were truly complicated and serious, that’s exactly when you’d see a private clinic jump in. There's no way they can match the sheer scope of public healthcare; they simply aren't built to deal with high-risk patients who require exhaustive testing and long-term management.

Since you seem to be such a unique case, why not start a new thread about your condition? I'm sure someone out there will relate.

I am genuinely curious... not because I'm interested in people—honestly, I have plenty of social connections already—but because I want to understand how a private specialist could run so many tests and reach a diagnosis that the entire public health system missed during all your previous screenings.
In my experience, that sounds like science fiction.
But hey, there's always an outlier.

I've come to the conclusion that it's essentially some kind of ultra-rare condition—like, the only one of its kind in the entire US—so I suppose that’s why they won't do it; they just don't want anyone to actually identify it.

Hey.

My story isn't empty; I just haven't laid all my cards on the table yet, which is why it looks

I'd love to write more, but honestly, I can't due to privacy concerns.

The condition itself isn't that rare.

And this really is a unique case for several reasons, but I'm not going into that here right now.

mellowskipper said:I've come to the conclusion that it's essentially some kind of ultra-rare condition—like, the only one of its kind in the entire US—so I suppose that’s why they won't do it; they just don't want anyone to actually identify it.

I know of some specific conditions: ADHD, Asperger's, McFabry, Huntington's chorea.
First she claims it's a rare disease, and now suddenly it's not that rare here in the States.
The whole thing just screams neurological or psychiatric diagnosis to me... I mean, maybe I'm off base, but that's my guess.
When private doctors don't know what's going on, they just point you toward the public hospital system. Instead of actually helping people, they just keep things quiet.
Honestly, it's no wonder this country has gone completely to hell.

Nicholas Davis4 said:No private provider is going to take on a complex illness if there isn't a clear profit margin in it; frankly, they don't have much skin in that game.
I'll be honest, I've completely lost the thread of your argument.
If a case were truly complicated and serious, that’s exactly when you’d see a private clinic jump in. There's no way they can match the sheer scope of public healthcare; they simply aren't built to deal with high-risk patients who require exhaustive testing and long-term management.

Since you seem to be such a unique case, why not start a new thread about your condition? I'm sure someone out there will relate.

I am genuinely curious... not because I'm interested in people—honestly, I have plenty of social connections already—but because I want to understand how a private specialist could run so many tests and reach a diagnosis that the entire public health system missed during all your previous screenings.
In my experience, that sounds like science fiction.
But hey, there's always an outlier.

Besides, if it's really that rare, there should be an American association for rare diseases. Otherwise, you'd actually put in the effort to dig and dig for answers.

Kyle Reed30 said:Hey.

My story isn't empty; I just haven't laid all my cards on the table yet, which is why it looks

I'd love to write more, but honestly, I can't due to privacy concerns.

The condition itself isn't that rare.

And this really is a unique case for several reasons, but I'm not going into that here right now.

If I had to guess, we're talking about organic dementia.

This isn't some case of organic dementia. I actually reached out to the National Organization for Rare Disorders once, and they were completely in the dark. The issue isn't necessarily how rare the condition is—it’s just how unrecognized it remains. Honestly, it feels like every doctor I see asks me for a definition.
I’d love to dive deeper into the specifics here, but I have to keep things private. I've lived with this since birth, even if it was only just officially diagnosed.

Kyle Reed30 said:This isn't some case of organic dementia. I actually reached out to the National Organization for Rare Disorders once, and they were completely in the dark. The issue isn't necessarily how rare the condition is—it’s just how unrecognized it remains. Honestly, it feels like every doctor I see asks me for a definition.
I’d love to dive deeper into the specifics here, but I have to keep things private. I've lived with this since birth, even if it was only just officially diagnosed.

Oh, sure, because apparently *no* doctor is capable of spotting a rare disease, and the Mayo Clinic doesn't exist for cases like this. I'm honestly shocked your private neurologist didn't refer you there. Just once. It's called a referral. Honestly, it's a shame, but your story sounds pretty hollow to me.

I went scrolling back through seven pages of this thread, but I couldn't find any discussion regarding the Social Security disability board.
Quick question—does anyone know how long it typically takes to get a decision from the disability commission? I submitted all my medical documentation on January 6th, and I haven't heard a single thing yet. 🙂

🤣

feralridge3 said:I went scrolling back through seven pages of this thread, but I couldn't find any discussion regarding the Social Security disability board.
Quick question—does anyone know how long it typically takes to get a decision from the disability commission? I submitted all my medical documentation on January 6th, and I haven't heard a single thing yet. 🙂

It’ll take forever, and they'll probably just end up labeling you "fit for duty" anyway. Honestly, if you think you're getting a straight answer on the pension subforum, good luck with that. You'll be waiting until the next century before anyone gets back to you. It's a joke. They’re literally letting people crawl back into their jobs right after fighting cancer, and don't even get me started on the other total lunatics they let through the door. I won't even go there.

Brandon Newman95 said:🤣

It’ll take forever, and they'll probably just end up labeling you "fit for duty" anyway. Honestly, if you think you're getting a straight answer on the pension subforum, good luck with that. You'll be waiting until the next century before anyone gets back to you. It's a joke. They’re literally letting people crawl back into their jobs right after fighting cancer, and don't even get me started on the other total lunatics they let through the door. I won't even go there.

They can't exactly claim I'm fit for duty when I'm dealing with two major illnesses.
Aren't they dragging their feet a bit too much? I have rights to several benefits, yet everyone is just stalling, waiting on some commission decision.

feralridge3 said:They can't exactly claim I'm fit for duty when I'm dealing with two major illnesses.
Aren't they dragging their feet a bit too much? I have rights to several benefits, yet everyone is just stalling, waiting on some commission decision.

Honestly, you're lucky. They definitely are.
But if you really want to figure out where the bottleneck is, I'll DM you an email address for the Social Security Administration.
Look, forget the local office—go straight to the head of the SSA and the Administration. Just write to him directly.
In this country, you can make just about anything happen if you know how to play the game. smile:
And I'm being dead serious about the rest of it.

feralridge3 said:They can't exactly claim I'm fit for duty when I'm dealing with two major illnesses.
Aren't they dragging their feet a bit too much? I have rights to several benefits, yet everyone is just stalling, waiting on some commission decision.

The issue isn't really about proving how incapable you are—it’s more about how much capacity you actually have left.
So, if they decide there's even a shred of ability left in you, you'll probably get rejected.
They also tend to deny people who are just a few years away from meeting the initial requirements for Social Security.

I have an upcoming evaluation at the Center for Artificial Intelligence, but what I was actually asking about was the disability commission.

mellowskipper said:The issue isn't really about proving how incapable you are—it’s more about how much capacity you actually have left.
So, if they decide there's even a shred of ability left in you, you'll probably get rejected.
They also tend to deny people who are just a few years away from meeting the initial requirements for Social Security.

They can scrutinize every single detail they want, but the outcome is going to be a "yes." I’m not even guessing here. 😁

feralridge3 said:They can scrutinize every single detail they want, but the outcome is going to be a "yes." I’m not even guessing here. 😁

God willing.