Paraplegic And Penalised For Trying To Work
The Conservatives may like to lecture on the value of work, but since Sarah Jones – paraplegic, with chronic rheumatoid arthritis – took on a part-time job she has found herself under investigation for benefit fraud, and is struggling to feed her children.
Jones is not her real name. She tells me she feels as if the Department for Work and Pensions (DWP) is “hounding” her, and she’s afraid speaking out will only make her more vulnerable.
Worry and shame are constants for people in her situation. She sits in lingering nerve pain, but when we talk the first thing she wants to stress is that “being on welfare isn’t a life I chose”. Six years ago she was a comfortable, healthy mother of two doing a job she loved as a teaching assistant. Then, at only 40, she broke her back. Overnight, she was paralysed from the waist down.
Now she lives by stretching her out-of-work sickness benefit – employment and support allowance (ESA) – to cover bills, rent, and clothes for the boys. Physiotherapy to cope with the pain from the arthritis is another cost. Private, because the NHS doesn’t cover it. But in November last year, life began to look a little brighter: with the help of a friend, Jones was offered some work: eight hours a week doing consultancy at an agency. As she describes it, “a purpose, a way to contribute”.
In the benefit bureaucracy, this is what the DWP call “permitted work”: a disabled person may be employed for fewer than 16 hours a week (and earn less than precisely £115.50 for it) and not lose their sickness benefits.
However, when she checked the rules online, Jones says she found every disability forum “screamed ‘Don’t do it!’.” The message was clear: “If you raised your head above the parapet, you’d be shot down in flames.
“The thing is, I had two kids, and I wanted them to see me working, even if only for a few hours a week,” she tells me. “And I wanted to prove to myself and everyone else that I wasn’t on the scrap heap.”
After getting written permission from the DWP, Jones started work that winter. But by March, even a few hours a week was taking its toll on her health. She told the DWP she had to resign. The next month, an official envelope landed on her doorstep: the DWP fraud department was accusing her of working without permission. If she didn’t fill in a PW1 – a “permitted work” form – and send them her bank statements and pay slips, they would stop her ESA.
Despite the fact that she already had permission to work, Jones sent the paperwork the DWP demanded – but she couldn’t find her January payslip. A fortnight later, she got a letter from the department informing her she hadn’t “complied” by sending in requested information. Her benefits would be stopped.
Jones rang the DWP straightaway – “I was honestly hysterical,” she says – and was given an entirely different explanation: her benefits had been discontinued because she’d earned too much in January to qualify for ESA.
“That was because my boss hadn’t paid my Christmas holiday pay in December and so the January payment did seem inflated,” Jones stresses. “A quick call to my employer or myself would have clarified this. But no: they just stopped my benefit.”
Jones spent all that weekend “turning the flat upside down”, trying to find proof. “I couldn’t eat or sleep and was seriously at one point thinking of suicide,” she says. “I just couldn’t see a way through it. We had no money or food, and I’d been tried and found guilty of something that I didn’t do.”
In the early hours of the Monday morning she found the payslip and sent a scan to the DWP. She got a call that afternoon: the DWP accepted that she had got permission to work. But her payslip wasn’t enough to explain her “overpayment”, and they wanted to keep investigating.
Jones has now been without her benefits for four weeks. “I can’t feed my children or pay my bills,” she says. “I can’t remember the last time I ate or slept.” (Jones later tells me she’s had to start taking antidepressants.)
“I’ve had to have nerve blocks injected into my legs because I can’t afford to pay for physio now they’ve stopped my payments.”
Currently, Jones says, it’s like she’s living in “hell” and “limbo”. She’s had no letter informing her of the fraud investigation, or a time frame as to when it will be over – or when she’ll get her benefits back.
“I’m powerless,” she says. “I did everything by the book. I was totally honest and upfront … but because I’m disabled and poor, no one wants to listen. I need a lawyer, but of course I’m in no position to pay for one.”
A few days later, Jones emails me: she’s been vomiting. She has just called the DWP and been told her January sickness benefit has been “disallowed” – “I’m not sure what that really means,” she says – and they’re deciding whether she can continue claiming it. In the meantime, no benefit payments will go into her account. It’s half term for her boys this week, and that means no free school meals to help feed them.
“I want people to see what this government is doing,” she says. “I was just trying to make things better, and they used that to destroy me and my children.”