I didn't realize he was already on Social Security for retirement. He has Medicare A & B correct? If he has the dx of ALS, if he has qualified service he will be service connected and that will solve so many of your care problems. The VA has so much to offer-more than any place else for ALS in my opinion. :] Hang in there. It is completely overwhelming in the beginning. Just take it moment by moment.
My husband's dx is Bulbar Onset ALS. I believe that PBP and Bulbar Onset are one and the same. I would suggest that you make certain that is a documented official dx of ALS before you apply to the VA.
The appeal process is worse than the initial application. Has he applied for SSDI yet? DO IT NOW as you still need to wait the 6 months before you get a check. My personal advice, get a DEFINATE dx that states ALS asap. Have him sell his house and move closer to you. This is not a disease that you can cope with not having a caregiver/advocate. He is lucky to have a loving sister like you.