Daily cost-of-living struggles

Families we support share how steeply rising costs are impacting their lives.

George

George is 22, was born with Down’s syndrome and has an autism diagnosis.

“The cost of living crisis has impacted our lives hugely. I worry about it a lot because when you have a child like George, who requires the use of an oxygen machine overnight, your bills are horrendous.”

“It really worries me that I won’t be able to put my son’s oxygen on. Without the oxygen machine, his oxygen levels will go down and it’ll make him poorly. I genuinely have no idea if I’m going to be able to run George’s oxygen machine. If the cost goes up even more then I probably won’t be able to.”

Jemma, George’s mum

Farah

Farah has cerebral palsy and wears a splint on her right foot to help keep her stable. She requires care from her parents, including changing her clothes, taking her downstairs, feeding, toileting, and getting her to sleep.

The steep rise in costs has already had a big impact. They’ve got rid of one car, as it was unaffordable to have two and have stopped weekend classes like swimming and football, due to costs and fuel prices.

“When winter comes and it’s cold I’m worried about what we’ll have to do. In the past, we’ve spent evenings in the library or at my parent’s house so that we don’t have to use our energy. It’s horrible to think like this but we’re forced to do it. Never in my wildest dreams did I think I would have to have this thought process.”

Ali, Farah’s dad

Gracie

14-year-old Gracie has a rare genetic condition called Cardiofaciocutaneous syndrome, epilepsy, severe learning disability and is nonverbal. She uses a wheelchair and standing frame to aid her movement and will need additional support for the rest of her life.

“The cost of living crisis has impacted us massively. We don’t have any savings… we’re considering switching off the spare fridge freezer that we use exclusively for Gracie’s specialised batch cooked foods.”

Alison, Gracie’s mum

Archie and Max

Max and Archie have autism and Max also has ADHD. Archie suffered brain damage due to a neo-natal infection, so as well as being autistic he has learning disabilities, immune deficiency, sensory processing disorder and bowel problems that have left him doubly incontinent.

Mum, Jo shares: “The cost-of-living crisis affects us greatly, but it only magnifies what families like mine have already been suffering with for years!”

“Since our family need to do extra washing and have more baths, we’re seeing our utility bills go through the roof. Additionally, we’re having to do almost daily food shops that can’t be avoided or adjusted due to the specific sensory needs and allergies of the children, which results in food bills almost tripling in most cases. Furthermore, we constantly have to have things like the TV on in the background to meet our child’s sensory needs, and when you have a child that barely sleeps then the costs add up!”

Jo, Max and Archie’s mum

“It’s also costly to provide transport to and from school when your children are both in mainstream and specialist provisions. It’s extortionate! Especially when the local authorities can’t meet the demand so you’re left to pick up the pieces. We’re faced with persistent lateness and absences which can lead to fines for something that’s out of our control. Not to mention the pitiful 25p per mile average reimbursement that families like us are meant to receive at some point. We’re expected to choose between that or unreliable and often cancelled transport services.

“As a family we’re all exhausted and run down. We don’t have the spare money or energy to do things outside of the home. We feel isolated and alone. The creeping birthdays and upcoming Christmases put a lot of additional financial and emotional pressure on our situation. There’s not a single day that passes where we’re not having to fight for help or desperately seek relief. It sounds awful, but it’s true.”

Lewis

Lewis is 13 and was diagnosed with autism at the age of two. He has sensory issues and doesn’t like loud noises or when people touch him. He doesn’t walk comfortably and his feet and legs are twisted inwards, meaning he is unable to walk long distances and can feel extreme pain.

“I’m unable to fuel my car as much as we used to. It’s a real struggle. Some days I have to take Lewis off school because I can’t afford to drive him there and he doesn’t receive any transport support. His school is 45 minutes away so he can’t walk there either. It’s a real struggle.”

Sarah, Lewis’ Mum

The Cost of Caring report features research from our last four quarterly family polls, from September 2021 to June 2022, ahead of a new September poll coming soon.