Natalie Hay, whose 15-year-old son developed chronic fatigue syndrome as a result of Lyme disease after falling ill aged nine, became eligible for free school meals after she was forced to give up her job in 2018 to care for him.
During Covid lockdowns when schools were closed to most students, parents whose children qualified for free school meals automatically received vouchers. But Ms Hay, who is from Kingston-upon-Thames said once lockdown ended, so did her son’s free school meals.
“Despite being entitled to free school meals my son never got them, apart from during lockdown,” Ms Hay said.
It’s now two years since Ms Hay’s son, who is now at home full time and receiving alternate education provision, has been without access to the free school meals he is entitled to.
Her other son, aged 12, who attends school in person, receives the lunches on site. She told i: “I get help for my well son and not for him, it makes him feel like more of a burden.”
“The one that was too ill to get to school because he was only doing mornings at the time or a few mornings and he was doing medical home tuition – so medical authorised absence from school – he received nothing, no help.”
Ms Hay, a single parent who is now back working but only part-time, said having to pay for his lunches is putting additional strain on her finances at a time when the cost of living is rising.
“It’s more difficult for me to pay my bills,” said Ms Hay, who spends £40-50 a week on her son’s lunches. “We just have to go without luxuries because I’ve got to find that extra money, not only for the extra heating and electricity but extra care costs.”
At one point her son’s former secondary school had told her that she could come into school to collect his meals.
“It was difficult because then I’d have to pay for a carer to look after my son while I went to the school to collect it,” she said.
“I explained that to them and then they sent me a box of food and the first time it was great and the second time it had rotten carrots in it and mouldy peppers.”
Ms Hay said that when she raised concerns about the quality of the food, the school retracted their support and said they had tried their best to help.
“He feels like he’s forgotten and like we’re a nuisance because he’s not at school,” Ms Hay said.
After becoming aware she was not the only parent with a disabled child unable to benefit from their free school meal entitlement, Ms Hay launched a campaign and crowdfund to support possible legal action for carers to receive vouchers instead.
“I set up an online campaign group which now has 1,500 parent carer members seeking free school meals for their eligible child. Some of these parents have two children with a disability and are on universal credit. Others are so busy caring for their child they do not have the time and energy to fight this discrimination.
“When every child was learning from home during pandemic lockdowns reasonable adjustments were made. Every child was helped. When disabled children are learning from home or are unable to eat the school meal due to sensory or dietary needs, no reasonable adjustments are made and barely any are helped. This needs to change.”
Single mother Danielle Preston has two children who are both eligible for free school meals but have never been able to access them.
Her daughter Thea, eight, has autism, ADHD and avoidant/restrictive food intake disorder and a dairy allergy.
Thea’s diet is very limited – she has eaten the same food every day for over four years – and without vouchers, Ms Preston has no choice but to shoulder the cost of her pack lunches.
Her 10-year-old son, Finlay is autistic and experiencing poor mental health. He has attended school in person previously, but is currently under alternative provision.
Ms Preston, who receives carer’s allowance, hasn’t worked for a decade in order to care for son who is now at home full time.
“I literally never have enough money,” Ms Preston said. “I’ve been in my overdraft for years. I just can’t get out of my overdraft.”
She added: “I have asked the school who in turn asked the local authority to issue me with vouchers to replace the meals that my son and daughter can’t access due to their disabilities. So far they have refused, despite giving out vouchers during lockdown. £30 a week in vouchers would help me greatly and it seems unfair that we are shut out from this help through no fault of our own.”
Portsmouth City Council, Ms Preston’s local authority, gave her a £100 voucher for her son at the start of the year while they reviewed their policy on free school meals for children receiving alternate education provision. She has not received any update on the progress of the review or any additional vouchers.
She said even though she does not do anything for herself and is constantly caring for her children, the situation makes her feel “rubbish as a parent”.
A number of parents with disabled children have successfully managed to argue for a food voucher as an alternative to a cooked meal in school. But campaigners want to see access widened for all.
Contact, a charity that supports families with disabled children, is calling on the Government to update national guidance to make it clear to schools and councils that public bodies like schools should make reasonable adjustments for disabled people so they aren’t disadvantaged.
Una Summerson, head of campaigns at Contact, said: “Many UK families with disabled children are having to provide a school lunch when it should be free. They are being unfairly disadvantaged and put at greater risk of experiencing food poverty.
“There is a drive to expand free school meals in Scotland, Wales and London, as they are known to improve a child’s achievement and wellbeing as well as help towards family finances.
“But there is a group of children already eligible who are missing out. That’s why we are campaigning alongside affected parents for schools and councils around the UK to offer an alternative such as a supermarket voucher so disabled youngsters have access just like their non-disabled friends.”