Thursday, 20 June 2024
UK Charity Week 2024 - Sponsored by Sinclair Method UK
Thursday, 20 June 2024

The ‘hidden’ costs of raising a disabled child

As we face a cost-of-living crisis in the UK, we’re all concerned about rising grocery bills and whether or not to put the heating on, but for those raising children with a disability, these soaring costs are putting more pressure on many families who are already stretched too far. 

Numerous studies have revealed that children and young people with a disability are more likely to live in poverty than those without a disability.

With families facing extra costs of over £580 per month on average (according to Scope), raising a child with a disability undoubtedly involves extra costs. What’s more, for 1 in 5 families these extra costs come to more than £1,000 a month. And over half of families say that these extra costs are only partly covered by their disability benefits!

So, what are these extra costs and how can parents of disabled children be expected to cope in this current financial climate?  

Our regional fundraiser, Sarah, who has two young boys with disabilities tells us about her experience.

Sarah says: “My eldest son, James, is missing digits on both his hands and my younger son, Jack, who has additional needs, attends a special needs school. So, we have a broad range of experience in what it means to raise children with both a physical disability and with complex needs. 

“We always knew there would be challenges ahead, but I’m not sure we realised how much it would impact the financial side of things.   

“Since adopting the boys, I’ve had to take a big step down in my career, so I can fit in with Jack and his routine. If I’m not at home when he returns from school, he gets very distressed, so I’ve had to find work that allows me more flexibility and working full-time simply isn’t an option anymore. I consider myself one of the lucky ones, as I’ve managed to achieve that working in the third sector, but with some roles and sectors, employers are not so accommodating.

“I can’t imagine doing some of the jobs I’ve previously done, not just because of the time commitment involved but because I’m not sure I would have the head space to do it alongside looking after James and Jack!” 

According to a report by the Papworth Trust, only 3% of parents with disabled children work full time, and 84% of mothers of disabled children do not work at all compared with 39% of mothers of non-disabled children. Yet it costs three times more to raise a disabled child as it does to raise a non-disabled child.  So, it’s clear that raising disabled children has a huge impact on family finances, both in terms of earning capabilities and additional costs. 

Sarah continues: “One of the big issues for us has been the lack of holiday clubs for children with behavioural needs. When you do eventually find one, they are much more expensive – more like £50 a day as opposed to £20-£30 for standard holiday clubs. They also don’t tend to run every day, so the only one I have found local to us that can meet Jack’s needs runs just two sessions a week that he can attend.  

“Any parent will understand how much of a juggling act managing work with school holidays is, but when the child care you need simply doesn’t exist or is a drastically reduced service it just adds to the pressure and, of course, means many working parents, like me, will struggle to have enough annual leave to take.

“There are so many things in the day-to-day life of raising children with a disability that incur extra costs. Extra costs involved in buying special foods for dietary requirements; increased energy bills due to running medical equipment; car parking charges for numerous hospital appointments. 

“And these are just the tip of the iceberg! There are also unexpected costs you don’t even factor in. For instance, Jack’s specialist school is 5 miles away, which means we’re reliant on transport funded by the local authority to get him there and back. But it’s not always guaranteed, so sometimes we find ourselves having to make a 10mile round trip, at a time when petrol prices are soaring, just so he can attend school.  

“Through my work with Children Today, I’m also very aware that lots of families raising children with behavioural issues, regularly find themselves having to replace broken furniture and electrical items that may have been damaged in an outburst. But you can’t really plan ahead for these things. Some of the parents we speak to have ended up in debt trying to replace broken items. 

“I’ve also definitely noticed a change in the amount of statutory support available over the last few years, as the NHS is squeezed tighter and tighter. When James used to see his occupational therapist, he was often given things such as loop scissors and specialist cutlery, to help him. Now when we see the OT they just tell us where we can buy it. And as we all know specialist equipment is always more expensive!

“When people are struggling to put food on the table and heat their homes, things that were already prohibitively expensive, like an adapted buggy or specialist trike fall off the radar altogether. But these are the things that can help a family spend more time together or enable a child to get more exercise, which is vital in maintaining a decent standard of living!” 

Disabled children, young adults and their families need our support more than ever. To make a donation to help us continue to give to those affected by disability or living with a life-limiting condition visit www.childrentoday.org.uk/donate.

If you or someone you know needs support with funding for adapted equipment contact us at info@childrentoday.org.uk or call us on 01244 335622. 

Names have been changed to protect the identities of the children. 

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