We qualify for nursing respite because Caelan requires 24/7 supervision.
However, qualifying for it doesn't mean that you get it.
When Caelan was initially discharged from CHEO we were told that we qualified for maximum nursing coverage of 227 hours a month. The problem was finding an agency that could provide a nurse for eight hours a night, seven days a week. There was no problem if we wanted coverage for days but for our family (and most others) if we could get night nursing that is definitely what we preferred. At that time, there were several children in CHEO who were only there because they couldn't find an agency to provide nursing once discharged. Luckily for us, living outside the city meant we were managed by a different Community Care Access Center (CCAC) office, one that thought they could provide a night nurse. It didn't take too long before they had 4 night nurses lined up to cover our seven nights a week. In fact, Caelan was the last infant added to the list in search of nursing and the first to get discharged.
Then we got home and lost nurse after nurse for various reasons. The agency seemed to be continuously sending out new nurses for training and then we never saw them again. Really? Are we that scary? I didn't think so. The job seemed easy enough and in a worst case scenario we were just down the hall, one holler away. It took a long time to get another regular set of nurses to cover our seven days a week. Even then though, there were still many nights without coverage. Most typically when one got sick there wasn't anyone to cover the shift, regardless of how many nurses had trained with us. It's been frustrating.
At 227 hours a month and 8 hours a night, the math doesn't quite add up. February of a leap year would be the only month that we would actually have full coverage if we had the nurses. Every other month we would have to pay for the shifts over and above the 227 hours, if we had the nurses. Since Caelan's been home that's only been an issue once. Most months we would end up with a surplus of hours available to us and no nurse to cover them.
Last month this was the case and yet when I tried to recover some of those extra hours the rules had changed. No longer was our maximum the 227 hours a month, we were now on a 56 hours a week, maximum.
Well, with a maximum of 56 hours a week we would financially have full coverage for an entire month, every month, if we had the nurses. The problem is that we don't get the nurses and now everything is calculated on a weekly basis. This means that if we don't have a nurse on the Tuesday night we have until Sunday to use those extra hours. The 56 hour week has to be billed by Sunday. Guess what night we typically don't have nursing coverage? Saturday, of course! Friday and Sunday being close runner ups! Now if we're unable to get nursing on any of those nights what's the likelihood that we'll be able to use up those extra hours? Pretty much... ummm... big fat ZERO!! We asked if we could carry those hours over one week and the answer was no. Sounds like a money saving proposal by CCAC to me.
I shouldn't complain... but I am.