Who Cares? - a brand new, raw, honest, emotional, tell-all blog from parents of disabled children
My child has been let down so many times by carers I’ve lost count.
Years ago when carers would let us down at the last minute it wouldn’t be a problem.
I would take my child to work with me. They were small, cute, quiet, ‘transportable’ in their tiny wheelchair and bag of toys.
Lunch time feeding was a bit a of an issue, and I probably took longer than the hour allotted, but it was forgivable plus, my child’s presence brought a lot of joy to everyone in the office and my child saw it as a perk to hang out with mum and have lunch out.
It was an exhausting experience for me but sometimes, it just had to be done. I had to – have to – work. I am a single mum with no family around so when carers say they have a cold or their car has broken down I am on my own. Finding a qualified, competent replacement to care for your disabled child at the last minute isn’t easy.
Non-disabled children can just pack themselves off to a neighbour, or join a holiday or half term activity club.
Not our children, with their wheelchairs, their tube feedings, their communication devices that they use instead of speech. They are not so easily accommodated at neighbour’s house nor a local sports or activity centre. It’d be great if that wasn’t the case……..but it isn’t.
I used to dread the phone when it bleeped in the morning. WhatsApp showing a message that started with: “I’m really sorry but I can’t come in today”.
There I was, plan in hand for the day, suit on and shoes on and it all came to a halt.
The problem is, unless you’re part of an agency (and very few have the budget to pay agency staff), there is no Plan B. Plan B is – you the parent, also calls-in sick to work or you take your child with you (if you can; some workplaces, of course, like factories or shop floors aren’t feasible).
Now, however, my tiny, portable child can’t come to work with me and actually, in their advancing young adult years doesn’t want to be seen at ‘mum or dads’ work’. And why should they? Why do they have to have their day scuppered as well?
This is what gets me. When carers cancel at the last minute not only does the parent’s day come off the hinges but the young person’s does as well. What of their plans for the day?
This is where the magic ‘bank staff’ should come in. These are willing, trained carers who remain in your contacts pool who can ‘drop in’ and cover periods of annual leave or (hopefully) shifts at the last minute when your regular carer can't come in.
Except, no one I know has been able to build-up a bank of cover staff – not since Brexit and definitely not since the Covid19 pandemic. There is a massive, gaping hole in the care industry and we are right smack bang in the middle of the worst crisis we’ve ever been in – not just in my little house - but nationally.
This isn’t for a want of trying. We advertise and advertise and: nothing but tumbleweeds. Months go by and we have no cover. So what this means is we are at the mercy of ANY carers who come our way and we find ourselves bending around THEIR schedules. “OK. So you can do every third Friday and you can’t start for six weeks? OK – YOU’RE HIRED!”
“You’re willing to do three days a week but can’t do the hours we need and you can only work term time? PERFECT – WELCOME ABOARD!”
I can’t see a way out of this at the moment. What we have to do is NOT plan for work tomorrow. NOT plan for a day ahead and just be grateful when we have carers coming in. That’s the reality and it's a terrible way to lead any life.
Who cares? Who knows.
When we are left like this we ask 'Who Cares?'? Who cares enough about disabled children? Who cares enough about those who look after them to give them a break? Who cares enough at the local authority to check that carers are turning up to work and doing their jobs properly? And when no one is left - Who Cares?
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