When i worked in the BBC Radio and Music team one of the senior managers used to use the phrase "making bets" when it came to strategy decisions. I always liked the tone, it was a clear intention, but also an acceptance that it was a guess.
With that in mind, i’m starting to make a few bets of my own with my care.
My three bets are:
I think i will recover quicker if i move around less so my routines are less disrupted. Right now, i sleep in a different bed at the week and i loose my routines etc. My bet is that if i reduce that variation i will recover more quickly so its worth the extra support costs.
Less support during the day, for more support overnight is probably a good trade off.
I think mutiple support visits during the day each with a routine is better than one big routine in the evening. It alllows for me to better pace myself and it means that people can help me get back on track when days go badly.
We’re going to split my support time in half, have a morning visit and an evening visit.
We will make sure we have a reliable informal carer (aka a babysitter) set up to cover gaps and small extra things. For example, that might be someone to go to an event with, or simply someone to look after me when i have got the pacing wrong. We need some flexibility in the system, we’re lucky that we have a great babysitter so we should make sure to keep that going.
This arrangement is not that much more expensive than our current approach. We have been granted some hours from the learning disability team and thats the time we will use for the daytime visits. Its less hours, but it’s free.
I will still be spending a pretty large chunk of my income on support (~35%) but if it speeds up my recovery and gives me a stable base for the future, thats fine.
This approach also gives me more autonomy. I will get 2 hours in the morning, 8 hours during the day and 2 hours in the evening to do what i like with. I wont be overly dependent on my freinds and i can also use the time to learn new skills if i wish.
I’m pretty excited about this change. We are going to transition too it slowly, but it will be a huge improvement for everyone in my life.