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Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
City
New York
My partner, who is 55, was diagnosed with PBP on May 1st. His speech is not yet completely slurred but he is already having problems pronouncing certain words. He is contemplating not working anymore and applying for Social Security. Yesterday he stopped by our local ALS Association chapter and was told that Social Security would most likely decline his application because he has not yet reached the point where he has lost his speech completely.

Is this correct? Based on what I have read I thought the mere diagnosis of PBP / ALS qualifies you to go on disability as it is a terminal illness.
My apologies if this has been addressed in other threads - I did a brief search and could not find an answer. Thank you!
 
I think the issue is in the label. ALS is a TERI illness. PBP is not. I believe people with PLS have the same problem?
He does not happen to be a veteran? The PLS people seems to have been able to get vet benefits by showing that PLS is considered by many to be part of the ALS continuum. The same argument might work for PBP but I doubt it would work with SS.
 
No he is not a veteran. But I see that PBP falls under "Compassionate Allowance" not TERI.

I can see it's going to be a long trip down the rabbit hole. Time to call a lawyer...
 
What a headache for you Manhattan. Already a very stressful time, without having to add in extra problems.
All the best with the SS.
God bless, Janelle x
 
Have him go into ss office at least. Some of the reps are actually really helpful. One of your other opinions may put a different spin on the label as well. they might see things differently. But explore things a tiny bit before involving a lawyer.
 
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Yes Nikki you are right. He is going to apply and we will see what happens. Better get the whole process started right now; we don't know where we will be in 5 months in terms of the disease progression. :(
 
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