Creating a space for carers to share their voice.
Rachel Mewes
Rachel writes for us in January 2021 about caring since the pandemic started.
We know this will resonate with many.
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. 

Unpaid carers are in our own individual boats that were already weather beaten at the start of the coronavirus pandemic. What is your boat like now? Mine has a broken engine and is leaking saltwater through the cracks and my distress flares got wet and don't work.
Betsy's mam. Northumbrian.Writer.
Under normal circumstances, parent carers get together with each other for support and encouragement. I attend two separate support groups for children with disabilities and find they are vital for me to maintain good mental health, but also for my daughter to socialise with other children and engage in intervention activities. These groups stopped too. So the back up plan of accessing your support groups is gone in an instant too. Now, on top of the fear and isolation, the panic begins to set in. How will I cope? I am human. Not a robot, as so many seem to think we are. Ever robots need to recharge though, and we don't have a power supply.

So we do what we do best and we care for our loved one. Our workload has intensified. We spend more time, tending to needs, lifting and handling, all of which start to take a physical toll on your body. We try and be a replacement for speech and language therapists, physiotherapists or other services, and attempt to keep our child's intervention activities going. But we aren't qualified in any of these areas. We try and keep in touch with friends in similar boats, but the sheer amount of attention and care our child needs, leaves very little time to access any social support for ourselves. Sometimes we don't have time to wash as the needs of others come first. We become reliant on dry shampoo.

As the months go by there is a gradual wearing down of both physical and mental health. This situation is unnatural. No man is an island? We are. We are stranded on an island and although we have been calling out for help and sending up smoke signals, nobody is coming to rescue us.
We have accrued additional costs over the past year. As winter approached we needed to heat our homes that we wouldn't normally be in during the day. We have used so much more electricity and gas, using devices to homeschool and cooking every single meal at home. Some of us had to use money we would normally use to buy winter clothing to buy tablets or computers as we are under pressure to homeschool.

Schooling a child with special educational needs or disabilities requires a degree, a postgraduate diploma and extensive extra training. Suddenly, the legal document called an Educational Health and Care Plan is no longer valid. Our government decides that our children don't have a right to access an education like children without disabilities. And that is, somewhat, of a human rights violation. So on top of our massively increased caring duties, we begin to try and deliver the provision set out for our child that, up until this point, they were legally entitled to. There is no extra support. We are cut off with a bit of paper that is now worthless.

And now here we are. Almost a year later. A few services have resumed, but we are hesitant to access them due to a new, more infectious variant. Unpaid carers are advised to inform their GP of their role in order to get a vaccine. The point being, that the majority of us care for someone vulnerable. Yet, we are not recognised.

So much more could be done to improve the lives of unpaid carers. So much more could be done to create a society that actually wraps its arms around the most vulnerable. And I'm sorry if using the word vulnerable offends anyone, I do understand why some don't like it's use, but please see I am using it in context of my 3 year old daughter. So much more could be done to safeguard the human rights of those who need care and those who care for them. But this cannot happen, unless we are seen, recognised, listened to and respected as equal human beings. Is that too much to ask?

I am here. We are here. We've been here the whole time. Caring. Because we care. Do you?

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