“Every morning parents with disabled children wake up and wonder: what do we have to fight for today?” Dan White cares full-time for his daughter, Emily, who has spina bifida and autism and uses a wheelchair. Along with his wife, he provides emotional and physical support, administers medicine, takes Emily to see specialist doctors, looks after her equipment and performs all the other regular tasks done every day by carers across the country. For this work, he receives £67.25 per week in Carer’s Allowance – the same rate received by all unpaid carers who are over 16 and not on Universal Credit.
Surviving on this amount is “not exactly what you’d call humane”, says Dan. “It’s based on 37 hours of care a week, but most parents I know provide 24-hour care. So £67.25 per week equates, over a year, to 39p an hour.”
Besides its obvious inadequacy, there are lots of rules that make the benefit unfit for purpose. The sum doesn’t increase if a carer looks after more than one person; an earnings cap means it can’t be claimed if a carer does more than 15 hours of paid work elsewhere; if two parents care for a child, as is the case with Dan’s family, only one can claim the benefit. Such stipulations have led to 1.2m unpaid carers living in poverty, despite the work they provide being valued at £132bn per year.
“A carer acts as a lawyer, as a physiotherapist, as a doctor, as a counsellor,” explains Dan. “We’re all these things in one and we’re treated so badly. Never talked about, never given the opportunity to discuss how we feel. We’re isolated behind closed doors, like the government’s embarrassing secret.”
This isolation is part of a far longer history of governmental apathy, even hostility, towards care-giving. Coronavirus, however, has pushed carers to breaking point, leading some to take their fight to court.
‘I was caring for both of them, with all external support cut off.’
While charities and activists in the UK have long been campaigning for an increase in Carers’ Allowance, Covid-19 has given the fight an added urgency. A report released by Carers UK in April found that 70% of carers were providing ten more hours of care per week on average since the start of the pandemic. It also showed that 81% of carers had seen their costs rise, due to things like increased domestic bills or the need to provide technological adaptations for lockdown. Carer’s Allowance has not changed to meet these new challenges.
Una Summerson, head of Policy and Campaigns at Contact – a charity which supports families with disabled children – says its welfare advice line saw a major increase in calls when Covid-19 broke out. “Pre-pandemic, families with disabled children were more likely to face a range of financial hardships,” she tells Novara Media. “They’re less likely to have a car or central heating, and more likely to live in overcrowded accommodation. Covid has exacerbated those issues and is leaving as many as one in five of those families fearing that they’ll go into debt.”
Dan has seen his already difficult financial situation exacerbated under coronavirus. Having been furloughed from his part-time charity work at the start of lockdown, he was recently told he wouldn’t be kept on. Alongside that, he was providing the majority of care for his daughter due to a decline in his wife’s health. “My wife has back problems that deteriorated through lack of support, to the point that she was using a wheelchair too,” he explains. “So I was caring for both of them, with all external support cut off.” Meanwhile, the closure of the facilities Emily normally accesses to stay healthy has made it a struggle to keep her well, causing new levels of both physical and emotional strain.
‘Many families that call us have said they feel forgotten.’
The lack of support offered to carers during Covid-19 is thrown into stark relief by the fact that the UK government has made provision – however small – for other vulnerable groups. Universal Credit was raised by £20 per week and will stay at that level until April 2021, while many workers received some help in the form of the Job Retention Scheme or the Self-Employment Income Support Scheme.
Elsewhere, too, carers have not been quite so abandoned. The Scottish government made a one-off supplementary payment of £230.10 to all carers in June to cushion the pandemic’s impact and plans to increase the regular rate to £76.10 per week from 2021.
But carers in England and Wales have received nothing. “Many families that call us have said they feel forgotten,” explains Una, “so not only would some extra financial help be important in making ends meet, it would also send a really important message that carers are valued”.
This absence of support has led one carer – an anonymous mother who cares for multiple children with disabilities – to challenge the government in court.
“Carers who are not part of the Universal Credit system have been unlawfully discriminated against because they haven’t received any financial support from the government, despite their financial situation changing significantly,” explains Jessie Brennan, the lawyer fighting the case. “The government doesn’t seem to be recognising that kind of financial disruption. They are focusing solely on people who have lost income, rather than also supporting people who have had their financial situation affected in different ways.”
The claim, which is supported by evidence from Contact, was filed back in the summer and heard at the Administrative Court in October, after the government belatedly identified that it wasn’t possible to increase the rate of Carer’s Allowance because of the technical specifications of the law governing that benefit. As a result, the claim needed to be amended – a request the judge refused on the basis that he didn’t believe the new claim could be successfully argued.
Undeterred, the legal team has now filed an application in the Court of Appeal. “The judge didn’t think that the government had the legal power to provide that sort of support, which we fundamentally disagree with,” explains Jessie. “The government should be able to provide grants in an unusual and extreme situation like a pandemic. We don’t agree on the legal analysis, so we want the proper opportunity to have our case heard.”
If they’re successful, the implications could be huge. The government would have to increase support for carers in order to not discriminate, setting a precedent for wider recognition of their vital work.
‘Parents are saying they’re on the verge of physical and mental collapse.’
But while the chance of legal recognition offers carers some small hope, Una is concerned about the number of families being forced to turn to legal channels. “Before this, Contact was involved in a five-year legal challenge that went all the way to the Supreme Court,” she says, referencing a case which argued against the rules that meant sick and disabled children who were in hospital for long periods of time would see their Disability Living Allowance stopped.
“We’ve also seen families having to go to judicial review on issues like respite care and school funding,” she continues. “Families are going to court for very basic support – support they should be entitled to anyway.”
Dan agrees and paints a bleak picture of what lies ahead if the state continues to ignore carers’ pleas. “All parents are saying they’re on the verge of physical and mental collapse,” he explains, “and if that happens, the state will have to take over the care of our children, which will completely break the NHS.”
But it’ll take more than a crisis grant to get carers justice. The whole social attitude around disability and care needs must change, says Dan. “Society is entirely based around someone’s productivity and that’s wrong. Life is based on who you are, the relationships you build, what you give to each other, and that’s what these children contribute in their own way,” he explains. “[As carers] we want to help facilitate that, but we can’t if we’re under the poverty line.”
Francesca Newton is a freelance journalist based in London.