When something is labelled as being for disabled children, the price doubles

Lowri lives in Hampshire with her partner Jack and their daughter Mia, who is three. Mia has Rett syndrome. She can’t move by herself, speak or eat – she gets her food through a feeding tube called a PEG. As well as the PEG tube, Mia needs other specialist equipment and 24-hour care.

Lowri spoke to Sense about what it’s like to face extra costs when you’re raising a child with complex needs.

Mia is a really happy and bubbly little girl. She’s obsessed with Peppa Pig, and she loves the outdoors. 

Since having her, I’ve learned a lot. There’s so much that other families might not realise about what it’s like to raise a disabled child. 

There’s a lot of things we can’t do with Mia, like taking her to soft play or the park. We have to find other activities that are suitable for her, like sensory rooms. 

And we have a lot of equipment and lights at home that Mia needs, which cost a lot, and which means our electricity costs are high. 

We use lots of energy to make sure Mia is safe, clean and happy

People don’t realise that having a disabled child can mean your energy bills are higher. 

Electricity companies treat all customers equally, but we’re not all equal. We don’t all have feeding pumps and electric beds. We aren’t all the same. 

Mia has a lot of equipment that needs to be charged. Her feeding pump has to be charged, and her suction tube – this helps clear her airways so that she doesn’t choke.

She also has an electric hoist, stair climber, chair and bed, because she can’t move herself. 

The bed has to be switched on all night, so we can tilt Mia up if she needs to be moved because she’s coughing or being sick. 

I’ve tried turning the bed off overnight to save money on our electricity bills, but I end up having to go into her room and turn it back on in the early hours of the morning.

We also have to use the washing machine and dryer a lot, because Mia is incontinent. We wash her bedding every day. I’ve probably washed my sofa covers more than 200 times.  

Mia also has a lot of lights. Again, other families might not understand why this is a necessity. But for Mia, lights are her toys. 

She can’t control her movements, she can’t reach out to hold or touch regular toys. So she gets her stimulation and enjoyment from lights. 

We have a galaxy light in her bedroom that calms her down when she’s anxious. And a disco ball that helps when she is having a meltdown. 

I also have some fibre optic lights for her. They came from a website for sensory toys. 

The problem is, whenever something has the word “sensory” or “disability” in front of it, it’s more expensive. 

Everything marketed to disabled children is expensive

We’ve been lucky that we haven’t had to pay for all of Mia’s equipment, but everything for disabled children is so expensive. 

We recently had to pay about £360 for a portable seat for her. I got a wheelchair poncho to keep her dry in her wheelchair when it’s raining – that was about £35. It all adds up.

“Our energy bills are going up. I think there should be some kind of allowance for people who need to run equipment like Mia’s.”

Then there are Mia’s nappies. Those won’t be provided on the NHS until she’s five years old, and even then, they only give you an allowance of three per day. But Mia needs changing about five times a day.

We’ve tried using regular baby nappies, but she needs pads with better absorption. They’re not cheap. 

There are trial and error things, too. For example, I recently bought some eczema gloves for Mia because she was licking her hands and making them sore. 

The gloves didn’t work, so that was wasted money, and it was about £10 a glove. 

It’s just so unfair that these items can be so expensive. 

We need a benefits system that meets our needs

We are getting £66 a month from the government for support during the cost of living crisis, but that ends in March. 

Our energy company told us to claim the Winter Fuel Payment, but we were told we can’t get it because our house is a new-build. 

In the meantime, our energy bills are going up. I think there should be some kind of allowance for people who need to run equipment like Mia’s.

Looking to the future, we really need a benefits system that actually reflects our situation. 

I can’t work because I care for Mia. I get Carer’s Allowance, but that amounts to £270 a month, which is far less than I would get if I could work. It comes to less than £2 an hour, and that’s if I was only caring for Mia for 35 hours a week. But I care for her 24/7.

I would work to earn more money to cope with rising costs if I could, but I don’t have a choice. 

I wouldn’t change Mia for the world, but people with disabled children don’t choose this. We shouldn’t have to put up with all these costs.