diagnosed2016
Distinguished member
- Joined
- Apr 30, 2016
- Messages
- 190
- Reason
- Lost a loved one
- Diagnosis
- 07/2016
- Country
- US
- State
- CA
- City
- California
I’m at my wits end here. PALS has almost no functional movement aside from head/upper torso and a few fingers. He uses his bipap about 20hrs a day. He can be left alone for an hour or so if he’s reading a book on his computer but he can’t move his hands so he’s stuck there if I’m not home. Our insurance will cover 35hrs weekly of ot/pt/nursing. We were receiving nursing visits and PT visits but now are being denied anything based on the fact that he has a caretaker living in the home (me). We have social workers on our case, multiple case workers, but the company who handles authorizations is hell bent on me doing everything. Has anyone heard of a situation like this?? We have 2 small children, no family and no other help and I’m slowly drowning.