Campaigners say changes could make it possible for young people with caring responsibilities to continue their studies or train for a job
Chloe, 16, doesn’t do days off. Or rather, she can’t afford them. Three days a week she’s at college, studying for a BTec in creative media production, the other four she’s working in retail, for £5.50 an hour. She needs the money for pricey course materials and the rent she gives her mother.
On college days, she’s up early to walk for an hour to get there (the bus is too expensive). She avoids eating in the canteen, where meals are “extremely expensive” and says she often goes without food for 12 hours. “I get tired, so it doesn’t really register if I’m hungry or not,” she explains.
But rest is not an option – after college she often has to go straight to work for an evening shift and doesn’t get home until 9pm. But she doesn’t get much downtime at home either – as a young carer, Chloe has to help her mother, who has bipolar disorder, a hernia and gastrointestinal problems, with cooking and cleaning, as well as dealing with the extreme behaviour of her three brothers – aged 21, 19 and 15 – all of whom have autistic spectrum conditions.
Such relentless schedules are not unusual for young adult carers like Surrey-based Chloe, who was recently also diagnosed with bipolar disorder. According to analysis by Carers UK, carers contribute £119bn a year to the economy. So the 310,000 carers aged 16 to 25 in England and Wales save the taxpayer at least £1bn a year by looking after parents, siblings and other relatives, but poverty, isolation and health problems – both physical and mental – are common. They are twice as likely to not be in education, employment or training, and for those who manage to stay in education, meeting the associated costs when their parents are unable to help out can make it a constant struggle to stay afloat financially.
Yet there are simple adjustments that could make things far easier, according to the National Institute of Adult Continuing Education (Niace), which is campaigning for three changes to benefit rules to be made. “These young people give up hours and hours, weeks and weeks of their lives to be carers – making a huge contribution to society and a really significant cost saving, says Nicola Aylward, Niace’s head of learning for young people. “They have the right to a good education and in many cases they’re not getting it.”
The organisation wants carers to be made exempt from the so-called 21-hour rule, which means that if they’re learning for longer than that a week – a requirement of most further education courses – they lose their £62.10 a week carer’s allowance. “Many of these families are living in or on the edge of poverty,” Aylward says. “That £60 can be the factor that pushes them away from learning.”
Niace also wants traineeships and apprenticeships to be provided to carers on a flexible hours basis. Current guidance says apprenticeships should be at least 30 hours work a week, except in exceptional circumstances – but these aren’t defined, and as no data is collected it’s hard to know if or how they’re being used. Aylward suspects carers are being put off by the lack of clarity.
In addition, Niace is calling for the 16-19 bursary fund for vulnerable students to be extended to young carers. Those in care, care leavers, people on income support or disabled young people are all automatically entitled to the full annual award of £1,200 – but carers are excluded. A discretionary part of the fund is administered by individual colleges and learning providers according to their own criteria, and while some prioritise carers, Aylward says, this approach is far from universal. “For many young adult carers there are increased costs to being in learning as a result of being a carer,” she explains. “They need to be able to get home quickly in an emergency. They need access to a decent laptop because their caring responsibilities may mean they have to work from home. Entitlement to that £1,200 would help them stay in learning in many cases.”
A spokesman for the Department for Education says: “Thanks to the Care Act 2014, which has been backed with £100m of funding, carers now have equal rights to the people they care for, including assessment and support. Local authorities are also required to consider a carer’s wishes in respect of education and employment. In addition, the Care Act includes new provisions to support young carers in preparing for adulthood.”
Chloe, whose mother calls her a “mini mum”, says she was told at her college that it wasn’t worth trying to get a bursary, because the fact her stepfather had moved into the family home meant she wouldn’t be eligible. Her college and work hours mean she’s not eligible for carer’s allowance. Money has always been difficult: her brothers’ conditions meant her mum couldn’t work, because she needed to be on standby in case of problems at school. Chloe says she missed a lot of school, often feeling too sick or stressed to go in, or wanting to help around the house when her mother was tired.
Although she has been doing well at college and would like to go to university, she fears the cost will make that impossible. “I’ll probably end up working full time in retail,” she says.
If she didn’t have to worry so much about money, what would she do? “I wouldn’t have to work as much and I’d be able to have one of those days when you just have a day off, “ she replies. “That would be very, very refreshing.”
Chloe features in an exhibition by the Children’s Society, which will be touring nationally from July. The Hidden exhibition uses portraits and young carers’ own words to tell the story of children and teenagers who care for a loved one.