When Natasha Hunt’s son Elliot was born, she had a plan. She’d done her psychology degree, then a teaching qualification, and was working at a mental health charity running therapeutic sessions in schools — groundwork, she hoped, for training as an educational psychologist. She loved it.
Elliot is now nine. He has a diagnosis of autism, intellectual disability, a language processing disorder, which can make it hard for him to be understood, as well as ARFID — avoidant restrictive food intake disorder, a condition that severely limits what a child can eat, and which is particularly common among autistic children.
His five-year-old brother Hugo is currently being assessed for autism and ADHD. Natasha, 39, has not returned to work since Elliot was born — not because she chose not to, but because the combination of his needs and the failure of the system designed to support families like hers has made it impossible.
“People say to me, ‘Oh, you’re so lucky to stay at home,’” she says. “And I think: this isn’t a choice. This wasn’t something I decided. It’s completely devastated us financially.”
Natasha’s difficulties earning money started becoming clear when Elliot reached school age. No place appeared. Despite more than 20 schools being approached in and out of the borough, none said they could meet his needs. The local authority’s solution was for him to remain in nursery while a place was found, but that placement quickly broke down. For two years, Elliot remained at home — and Natasha was unable to work.
He was eventually offered a place at an independent special school at the age of eight, at which point Natasha assessed the practicalities of returning to work. Whatever she took on would have to start after drop-off and end before pickup. It would have to be term-time only, because there are no holiday clubs or childcare options she has found for a child with Elliot’s level of need. It would also have to accommodate frequent medical and therapeutic appointments, and the days when he simply cannot attend school. “If you can think of something I can do,” she told the people who kept asking when she was going back to work, “I will do it.” Nobody could.
She now tutors SEND children outside school for six hours a week and is doing a counselling course — free through her carer status — hoping it leads somewhere closer to what she’d originally trained for. The family has around £15,000 in credit card debt, plus a car loan, accumulated since she stopped working. Dom, her husband, works for the NHS, and his salary — currently under threat from a restructure — is all that stands between them and serious hardship. She receives Carer’s Allowance of £86.45 a week, the main state benefit for unpaid carers, and can’t earn more than £204 net a week without losing it — a cliff-edge that makes building any kind of working life nearly impossible. As for the career she spent years working towards: “I’ve just got the student loan,” she says. “That’s about it.”
The story of SEND families is usually told as one of bureaucratic battles and grinding stress. But it is also a story about money. The gaps between what disabled children are legally entitled to and what councils actually provide are so wide — and closing them so time-consuming — that parents find themselves effectively working a second full-time job: chasing reports, attending endless meetings, navigating tribunals, filling in forms. For most families, that second job is done by the mother. And it makes paid work, for many of them, impossible to sustain.
According to Carers UK, 40 per cent of all unpaid carers have left work entirely, and a further 44 per cent have reduced their hours. The financial toll falls hardest on younger carers — those aged 25 to 44, the years when most SEND parents are deepest in the system — who have the highest poverty rate of any age group, at 38 to 39 per cent. Poverty in this context means a household income below 60 per cent of the national median: for a couple with two children, that is around £530 a week, or £27,500 a year, after housing costs.
Hayley Harding, 42, used to work as an in-house lawyer, including for Google. For several years she and her husband Ben, 42, lived on one income while she managed the needs of their two sons, 11 and nine, both autistic with ADHD, in Surrey. She co-founded the Let Us Learn campaign group, which pushes for reform of the SEND system. For the past two years, she has been able to work part-time.
Hayley Harding currently works part-time but her family relied on one income for several years“I know other people are in worse positions than us,” she says. “I’m earning something now, but it’s still not easy, neither of us has much of a pension, and everything goes on the boys — therapies, private appointments, because the CAMHS waiting list is so long.
“If I didn’t have to spend the majority of my time negotiating with the local authority and the school just to make sure they get what they need to exist at school — not a Rolls-Royce education, just to exist — I could earn more. It’s not my boys that’s stopping me. It’s the systems that aren’t working as they should.”
There is a version of the SEND debate in which parents like her are cast as middle-class opportunists working the system. She finds this hard to square with the reality she sees around her. “All the SEND parents I know are spending large amounts of their income — forsaking holidays, pensions — just to help their kids be something approaching happy.”
The costs that receive least attention are the ones that won’t show up for decades. NHS waiting times for autism and ADHD assessment in England can run to six years, pushing families towards private diagnosis at £2,000 or more per assessment. Private speech therapy runs to £80 to £100 an hour. Then there is the tribunal: the legal process through which parents can challenge a local authority’s decisions about their child’s support at school. Parents usually arrive at tribunal because the local authority has refused to provide what professionals say the child needs, and because there is no other meaningful route to achieve this. Legal representation can add tens of thousands of pounds. Parents who win — and they win in 98.7 per cent of cases that reach a full hearing, because councils routinely make decisions later found to be unlawful — cannot recover a penny of those costs.
There is a bitter logic to how this has come about. A study by Pro Bono Economics estimated that lost SEND tribunals cost the public purse £59.8 million in 2021-22 alone, with £46.2 million falling directly to local authorities. That figure has risen sharply since. It is money spent on lawyers to contest families’ claims — money that could, in principle, have funded the support those families were asking for in the first place. Instead, the cost falls on the parents: in lost earnings, in drained savings, in pensions that won’t recover.
“The money is the anxiety,” Natasha says. “And the lack of worth and purpose is the depressing part.” “When I meet new people they ask, ‘What do you do?’ And you have to say, ‘Oh, nothing. I’m just at home with my son.’ And that conversation ends there. You don’t realise how much worth people attach to work until you’re someone who can’t participate in that conversation.”
She has stopped letting herself imagine the parallel life. “I used to say the person who existed before just doesn’t exist anymore,” she says. “I had to move myself onto this other path and let the other one go. That’s the only way it feels manageable.” She pauses. “It wasn’t this dreamy life of pilates and cafe visits — I was looking after a son with a lot of needs. It really was hard to think: ‘OK, well. This is just going to be me now.'”
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