-
Posts
5,678 -
Joined
-
Last visited
-
Days Won
2
Content Type
Profiles
Forums
Events
Articles
Everything posted by Jwheel86
-
Only the US Government could design a program where people with disabilities get fucked so hard. If I get laid off, very possible, I'm required to take Unemployment by Social Security. Unemployment is unearned income which means I lose access to the Social Security Medicaid working disabled program I'm on. I then revert back to SSI and the unearned income could reduce my SSI check $0, which would kick my ass off Medicaid. Currently scrambling to switch off Social Security Medicaid to North Carolina Workers with Disability Medicaid which won't screw me over.
-
Ugh, the SMA community, especially in the New York area, is not good right now. A lot are scared their aides are going to get sick and get them sick. People are spreading critical care criteria being drafted in some states which specifically denies care to those with SMA. A lot of people with SMA are on vents normally and terrified that if they are hospitalized their personal vent will be taken by the hospital. SMA community is normally very up beat take on the world, not now.
-
SMA community is starting to panic, a lot of hospitals are cancelling Spinraza doses. There is a good argument that the dose is too low or not frequent enough, so going beyond the normal 4 month period is going to really suck, especially since a pulmonary infection is not the ideal time for a muscular decline.