AMPLIFYING CARERS' VOICES
Creating a space for carers to share their voice.
Rachel Mewes 
As the budget goes out, we share Rachel's blog on the financial impact of caring, specifically the issue of claiming Carers Allowance and its impact on Universal Credit. 
How Dare You Care?

Let's be frank. Those of us who have had to give up our careers in order to care for a family member would likely not have had to resort to this extreme measure if our culture was one in which disabled and sick people were properly supported, respected and had equal rights.

I am not the first mother who had to make the decision to resign from her position in order to care for her disabled child and I won't be the last. The reasons are absolutely nothing to do with my child's disability. The reason I had to make the decision to end my career as a teacher is because of the hostile nature of our society, infrastructure, policies and procedures towards my daughter. I gave up being a teacher in order to become my daughter's lawyer, advocate, voice and representative. If I hadn't, she would most likely not be with us today. And if she had managed to survive the lack of healthcare and poor standards of care for people with learning disabilities then she certainly wouldn't have a school place, as this was another of her human rights that were denied. The area I live in is renowned for its lack of services and the Local Authority is famous nationwide for its discriminatory practices towards children with SEND.

If the infrastructure, funding, inclusive attitude and practice were in place to fully support disabled children then there would be thousands more parents still able to work. Instead, we are backed into a corner when we refuse to allow our children to be treated like animals. When we refuse to allow human rights violations to be carried out on our loved ones. When we refuse to accept that our children are not worth spending money on. We are forced to fight for their lives. It doesn't need to be this way.

Believe me, I would much rather be still teaching. It is my passion. I would much rather be marking the work of my students on an evening than reading through a diabolical EHCP, highlighting every instance of prejudice. I would rather be teaching a child how to read than spending hours every day on the phone, trying to get my daughter her right to healthcare and an education. In a progressive, modern society, disabled children should be guaranteed their rights. In the UK, in 2021, the exact opposite is true.


When my Carer's Allowance was finally approved I noticed a shortfall in my monthly income. On checking my Universal Credit statement I saw that the allowance you are given under UC for being a carer for a disabled child is £191 but then, £268 Carer's Allowance is deducted off your total, leaving you £77 worse off for claiming Carer's Allowance.
Rachel @rachelmewes1982
@WeAreCarers campaigner
When I gave up my job, I turned to the DWP for financial support. I applied for Universal Credit in order to replace a fraction of the salary I had lost. It took almost 2 months to get it processed. When being interviewed I was told one of my commitments in order to receive a Universal Credit was that I apply for jobs. I explained I was a carer for my daughter, who is disabled and after much questioning, they agreed that I didn't have to. I was advised to apply for Carer's Allowance as that, they said, is a clear indicator of the level of care my daughter needs and would avoid any questions being asked about why I wasn't applying for jobs. 

I applied for Carer's Allowance, which would be the replacement for my teacher's salary. It doesn't even cover half our rent, and as we're not classed as a priority for council housing, we are trapped with the majority of our income going in our landlord's pocket. When my Carer's Allowance was finally approved I noticed a shortfall in my monthly income. On checking my Universal Credit statement I saw that the allowance you are given under UC for being a carer for a disabled child is £191 but then, £268 Carer's Allowance is deducted off your total, leaving you £77 worse off for claiming Carer's Allowance. 

What do we do? We are told we need to be in receipt of Carer's Allowance in order to allow us to be exempt from job seeking. Is the fact that we have a real human being completely reliant on us for their needs not enough? We are then penalised for claiming it, through deductions off our income. This is nothing more than a continuation of the hostile environment towards disabled people and their unpaid carers that runs throughout every vein in our society. 

Where do we even begin to address the manner in which families like mine are treated? The problems, prejudice and penalties for being disabled are embedded into the systems that claim to support. Let's be clear, this entire article hangs on Carer's Allowance and how we aren't even able to claim our 39 pence an hour to live on, as we are punished for having to apply for it in the first place. That 39 pence an hour is the subject of an entirely different article. An article about poverty and disability. But, for now, scrutiny and overhaul of the system that penalises carers for claiming a £67 per week allowance would be a start. 





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