Families we support to share how much the costs are rising have an impact on their lives

george

George is 22 years old, was born with Down syndrome and has been diagnosed with autism.

His mom, Jemma says:

“It really worries me that I can’t put my son’s oxygen on. Oxygen is essential for George to have every night because he would have difficulty breathing without it. Without the oxygen machine, his oxygen level will drop and it will make him sick. I really have no idea if I’m going to be able to run George’s oxygen machine at Christmas. If the cost goes up even more, I probably won’t be able to do it.

fara

Farah has cerebral palsy and wears a brace on her right foot to help keep her stable. She needs care from her parents, including changing her clothes, taking her downstairs, feeding her, bathing her and putting her to sleep.

The sharp rise in costs has already had a significant impact. They got rid of a car, as it was unaffordable to have two, and stopped weekend classes like swimming and soccer, due to fuel costs and prices.

Ali, Farah’s father, says: The weather is mild right now so we don’t need to turn on the heating, but when winter comes and its cold I worry about what we will have to do. In the past, we spent evenings at the library or at my parents’ house so that we didn’t have to use up our energy. It’s horrible to think like that but we have to do it. Never in my wildest dreams did I think I should have this thought process.

Grace

Gracie, 14, has a rare genetic condition called cardiofaciocutaneous syndrome, epilepsy, severe learning disabilities and is non-verbal, using Makaton to communicate. She uses a wheelchair and an upright frame to help her get around and will need extra support for the rest of her life.

Mom, says Alison “The cost of living crisis has had a massive impact on us. We have no savings. We have a lot of extra washing due to Gracie’s conditions and Gracie has to shower much more regularly than the others as her hygiene is very important.

Archie and Max

Archie and Max are autistic and Max also has ADHD. Archie suffered brain damage from a neonatal infection, so in addition to being autistic, he has learning disabilities, immune deficiency, sensory processing disorder, and bowel issues that made him doubly incontinent.

Mom, Jo shares: “The cost of living crisis affects us enormously, but it only amplifies what families like mine have already suffered from for years!

Felix

“Energetic, loving and adventurous,” seven-year-old Felix has autism. He especially needs a lot of preparation when his family wants to do something out of the ordinary.

Her mom Joy said:The cost of living crisis has had a huge impact on our lives. My husband is a stay-at-home dad and takes care of Felix. I’m on maternity leave and my money is next to nothing. We had to cut back on our livelihoods to pay the bills. We had to get stricter with food, like making meal plans, sticking to a shopping list, and no takeout or takeout. Overall, this means fewer treats for the kids.

lewis

Lewis is 13 and was diagnosed with autism when he was two years old. He has sensory issues and doesn’t like loud noises or people touching him. He does not walk comfortably, and his feet and legs are twisted inward, meaning he is unable to walk long distances and may experience extreme pain.

His mom Sarah says: “I can’t fuel my car as much as I used to. It’s a real struggle. Some days I have to take Lewis out of school because I can’t afford to drive him there and he doesn’t get no transportation assistance His school is 45 minutes away so he can’t walk there either, it’s a real struggle.

A boy wearing a blue t-shirt stands in front of a seaport wall with a speech bubble next to a picture that says Food prices have gone up.  I usually go to a big store once a month, but if we run out of food, I have to ask my family for help.

Mohammed

Muhammed, 11, has been diagnosed with a chromosome 9 deletion. This means he is missing developmental genes, resulting in slow development with delayed speech and learning difficulties.

His mom, Aisha says: “I drive, but because of gas prices, we walk a lot more now. I only use the car for hospital appointments, errands and long trips. I used to drive my other kids to school, but now they take the bus. We try to avoid using the car too much. I don’t know how we’re going to cope with winter with the heating on.

Cleo

Six-year-old Cleo suffers from a rare genetic condition called Weidemann-Steiner Syndrome which causes hypermobility, hypotonia and global developmental delay.

His mom, Jennifer, says: “We can’t go to the places we want to go as much as we would like because we can’t afford it anymore. We plan food well, but our food bill has gone up by £20 a week and that’s just the basics.”

“Our gas and electricity bill has already gone up. We weren’t able to put the hot tub on as much, which had a knock-on effect on Cleo because it was such a great source of pain relief for her hypermobility. Cleo cries in pain every night and we couldn’t use her. She is really fighting her pain right now.

The Cost of care The report features research from our last four quarterly family surveys, from September 2021 to June 2022, ahead of a new survey in September to come.

Read the full cost of care report