It's a long one but I'd like to get this off my chest if anyone is willing to listen?
As a fellow carer I'm really pleased that the earnings limit is going up for those carers who can work, and that the government is also looking into the problem of the 'cliff edge' cut off point for those earnings. So far, so good.
However there is absolutely nothing for me as a full-time carer. I care 24/7 for my profoundly disabled, now young adult, DC who is at home full-time. As a result I cannot take on any paid work. I do feel that carers like me are the forgotten carers, often hidden behind closed doors.
I did have a career before my DC was born. So far I have lost at least £600,000 in lost earnings and also in the future I will only get a tiny fraction of the workplace pension I would have had. At the same time I have probably saved the state £5 million in residential care costs by instead caring for my DC myself at home.
In return for that 24/7 care and sacrifice, I currently receive £81.90 per week Carers Allowance, which works out at about 48p an hour. Very reluctantly I have to rely on Universal Credit but, as others have said, every penny of my Carers Allowance is deducted from the Universal Credit, leaving me with about £227 a month.
When I start getting the small workplace pension at 60, it will be just enough to mean I will no longer be entitled to any Universal Credit. In one way that will be a boost for me psychologically - not to have to rely on and deal with the Universal Credit system - but I am concerned about the impact on things like help with Council Tax, eligibility for a social broadband tariff and potentially just being over the threshold for paying income tax. That could all make me even worse off. Because Carers Allowance is taxable, if I do have to pay tax then, for providing 24/7 care at age 60+, I will only receive Carers Allowance of £65.52 per week, which works out at 39p an hour.
It gets even worse for carers when we start receiving the State Pension. Carers aren't allowed to receive Carers Allowance and the State Pension together. That means that for providing 24/7 care at the age of 67+ I'll receive absolutely nothing in Carers Allowance at all. The small workplace pension will mean I won't be entitled to Pension Credit either, which I understand is the gateway to help with winter fuel costs, Council Tax and so on.
Being a 24/7 carer is full of love, but it is also back breaking, soul destroying, exhausting, lonely and full of fear for the future. Is what we give and give up not worth more than between 48p an hour and nothing?