Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
Why disabled families will always be caught in the poverty trap
Recently, the Chancellor stated that he wanted to make it easier for people to get back into work. Without going into the boring details, one of the people this covers is the Dude’s amazing, long suffering and awe inspiring Dad.
As the Dude’s main carer, Mr V gave up his job over 6 years ago to become our son’s full-time carer; for us it was a stark but simple decision to make. Too many hospital stays, too many appointments and too much time at work missed meant we were both at risk of losing our jobs – as the higher earner, it made financial sense for me to continue to work full-time (gah!) and for him to hand in his notice. Overnight, our family income was slashed.
My boy’s Dad usually starts his day around 6am, if not earlier, when he gets up to have his own breakfast, sort out the mornings medications, the Dude’s breakfast, and to get him up and ready for school while I get myself ready for work.
He then acts as a transport assistant, joining our boy in his taxi to and from school.
As his parent, he is allowed to administer the lifesaving medication and oxygen that is needed in the event of a seizure, that his Council-provided assistant/driver are not. Once home, he does the usual housework/dishes/laundry, batch cooks and blends meals for our son, keeps track of hospital appointments/medication levels/orders with pharmacy. While I am at work, he deals with all the meals, medications, bathtime, etc. The only things he doesn’t manage on his own are therapies such as physio, developmental therapy etc., as they require us both.
If he was a paid carer, he would be paid the national minimum wage.
This, anyone will tell you, is pittance for the work carers do and for how much of a difference they make to our lives. However, as an unpaid parent-carer, all he can claim is carers allowance – until this month this came in at £69.70/week. That equates to less than £10 per day. If he wants to work to get more money coming in, he can only earn £132/week for 2022/23.
To put that into perspective, at minimum wage that is less than 14 hrs a week. Where do you find a job that allows you the flexibility to work around a disabled child with complex medical needs, while only working 14hrs a week? This week he spotted a role at a local discount retailer restocking shelves, 4 hours in the evening for 4 days a week. But it would mean he would go over the threshold and lose carers allowance. After fuel costs etc are taken into account, it would leave us worse off.
Sadly, common sense seems to be missing here.
The obvious answer is to increase carers allowance to a meaningful amount, and to allow carers to claim for more than one person if they care for more than one person! Our loved ones save the economy billions by staying home and caring, instead of relying on social care or the NHS to foot the bill. Isn’t it time that they were recognised for the sacrifices they make?
