Disabled children are being forced to go without electricity or heating because their families are being disproportionately harmed by the cost-of-living crisis, according to research by a children’s charity.
The Childhood Trust said that the rising cost of energy bills and other inflation was affecting the families of children with special educational needs and disabilities (Send) even more than their mainstream counterparts.
Families with Send children needed an extra £581 a month on average before the pandemic – the equivalent of a £10,000 a year pay rise before tax for average earners – to have the same standard of living as those without special needs, according to the trust’s report, People don’t understand.
“Adjusted for inflation, that [£581 figure] is going to be much higher now,” said Laurence Guinness, chief executive of the Childhood Trust, which supports more than 200 grassroots charities.
“We know everyone’s been disadvantaged, but I think the data tells us that kids with Send are suffering disproportionately, which is really alarming because they are our most vulnerable.
“During Covid old people were disproportionately affected – they were dying in care homes at alarming rates. This is another scenario akin to that where the weakest, the most vulnerable, the ones who should get the most support and protection are in fact massively lacking support and [are] invisible.”
Today, the Childhood Trust launched its Champions for Children appeal, a two-week fundraising campaign aiming to raise £3.5m for a year-long comprehensive programme of services for 100,000 vulnerable and disadvantaged children.
For its research the trust surveyed social workers, charities and children with Send and their parents, and discovered that children had been forced to miss meals because of the cost-of-living crisis or had struggled to keep the heating going. Some had missed school several times over the past three months and reported being bullied in mainstream settings.
Raising a child with special needs is more expensive because things that other parents take for granted become much harder. Children might need a hoist to get them in or out of a wheelchair, an electric adjustable bed to avoid injury or a dedicated fridge for medicines – adding to a family’s electricity bill. Other extra costs include specialist transport, medical equipment and sanitary protection.
Social workers told researchers they were also less able to provide specialised transport, arrange day trips or provide personal care or medical equipment. More than half said that it had become harder for parents to simply secure a diagnosis.
“There’s been times when the [pre-paid] electricity [meter] has gone off completely,” said Sylvia, a single mother in London whose 18-year-old son is autistic, has ADHD, a heart defect and knee problems that add up to about 15 hospital appointments a year.
“I’m fortunate that I can use the credit card for emergencies but it still has to be paid. It feels like I’m digging my way out of a hole every day.”
Each year the council rejects her requests for improvements to his Education Health and Care Plan. It took four years until the bathroom was modified to become a wet room. Her son is not yet able to sit his SATs – usually done by children finishing primary education – and she would like to find extra tuition for him. And the rising cost of food and fuel means going out for treats is almost impossible.
“I would really like some support, some respite,” Sylvia said. “I’m constantly on the go and it’s impacting my son’s behaviour – you can see the scraps of frustration around why he can’t do the things his friends are doing, because we just can’t afford it.”
The solution advocated by Guinness is to support charities such as TAG Youth Club, which offers Send children in south-west London activities including wheelchair parkour, disabled skiing, rock climbing, fencing, archery, Ninja Warrior training and cooking.
Membership has soared from 98 to 246 this year according to chief executive Giles Hobart. “It’s because we offer affordable activities,” Hobart said. “Parents before were looking at things like theme parks and now they’re too expensive. We just ask for a donation.”
TAG is unusual because it accepts children with any kind of need or disability, so children with Down’s syndrome can mix with autistic children rather than staying in the same group all the time.
During the cooking classes, TAG makes sure that the students cook extra meals. “They get put in microwavable pots and we say ‘There’s some spare meals if anyone wants one’. People don’t want to be seen to have handouts. But all the meals go.”
He said funders such as the GLA and the National Lottery Fund often only gave grants for limited periods of a few years.
“They expect to give you a three-year grant then carry on. But a lot of organisations shut down and they have to find another one. We started because another club closed down. It’s a vicious circle.”
