We were already underwater in debt – now, we’re drowning

Rhia is 13 years old and lives in Bristol. Rhia is deafblind and has a life-limiting metabolic condition called PDH. Rhia’s father, Nick, shares how the family’s debt has been getting worse as a result of the cost of living crisis.

Our family was about £30,000 in debt before the cost of living even started to go up. This was mainly from a loan we had to take out to convert Rhia’s room to be accessible. 

The way things are going, the rising prices are now going to push us even further into debt.  

Families with disabled children face extra costs and challenges

Our joint income fell by 75% in the first years of supporting Rhia. This was because she’d be in hospital, and we’d need time off. Having a disabled child means you get fired, or you lose contracts because you’re not available at times people need. You get made redundant. It’s just the way it happens. 

You borrow to keep going, and hope for better days. We’ve been hoping for better days for a decade, but Rhia is life-limited, so we know we don’t have long. For us, it’s about quality of life. We want to spend quality days with her, because we know our time is limited.  

“Benefits haven’t kept up with the cost of living. Our support has basically been slashed in real terms over the last decade.”

Because I work, we don’t get many benefits. There’s child benefit, disability living allowance (DLA) and carers’ allowance. But benefits haven’t kept up with the cost of living. Our support has basically been slashed in real terms over the last decade. 

As a family with a disabled child, we face a lot of additional costs. In the current crisis, the rise in energy bills has affected us the most. Rhia’s condition means she is double incontinent, so we have to do several washes a day, which takes up energy and costs money.  

Rhia has to use a ventilator and nebuliser to help her breathe. Both of these cost money to keep running, and they have to run through the night. It’s the same as having a washing machine on all night. 

We also have night time carers for Rhia, so we have to keep the lights and heating on for carers too.

We’ll have to sell our house to pay our debts

“I’d like to see increased, targeted support from the Government specifically for disabled children and their families.”

We’re cutting costs everywhere we can, but we already live pretty frugally. We’ve cut back on food. Finding holiday accommodation that is disabled-friendly was really expensive pre-pandemic, and now it’s even worse. So we struggle to go on holiday. 

There’s not much else we can cut back on. At the moment, borrowing more money is the way we can keep eating. But our debt is continuing to build.  

Right now, we’re looking at selling our house to pay off our debt, because we can’t rely on financial support in the coming years. 

I constantly worry about our finances but my worries pale into insignificance when the alternative is your child dying. We just don’t have a choice. 

Families like ours need targeted support from the Government

The financial support announced by the Government in May was great, but it’s tiny compared to the thousands of pounds in energy costs we’re facing on top of the debt we’re already in.   

Disabled people and their families were disregarded and not supported during the pandemic. This situation is exactly the same. The effect of the crisis on disabled people and their families just hasn’t been considered.

The current system and situation is not supporting the most vulnerable in our society. There’s not enough people, carers or funding to support those who need it most. 

I’d like to see increased, targeted support from the Government specifically for disabled children and their families. These are the people with higher needs.