
‘I can't sleep, I'm so scared': disabled people face benefit cuts domino effect
When ministers announced an overhaul to welfare payments last week that will result in an estimated 1.2 million disabled people losing eligibility for personal independence payments (Pip), they did not mention the sweeping knock-on effects.
Because Pip is a 'gateway', any disabled person who loses the benefit will not only lose that income but other entitlements too, such as free prescriptions and council tax deductions. Most starkly, removing someone's Pip will mean their unpaid carer losing carer's allowance – in effect pulling away two main strands of a family's income at once.
The Guardian speaks to three readers who could be affected.
Before Will Evans fell ill with fibromyalgia and arthritis, he dreamed of using his film studies degree to launch a career as a film-maker. Then disability hit and he had to move back to live with his father in Wallasey, Merseyside.
Now 29, Evans has his father as his carer. After his father's council job was cut during the Covid pandemic, the two of them rely on Pip, universal credit (UC) and carer's allowance to get by.
But he fears he will not qualify for Pip under its new, tightened criteria. 'The system is already stacked against people with invisible or variable disabilities. I may have one 'good day' followed by three when I can barely get to the bathroom,' he says.
If Evans stops being eligible for Pip, he would lose £593 a month. But, in a domino effect, his father would also lose his entitlement to carer's allowance and with it, £307 a month – money that goes on food, fuel and car fees.
When the work capability assessment is scrapped by 2028 and the only way to get the health component of UC is through Pip – Will could lose another £400 a month.
The result would be devastating: the family's total income would drop by more than two-thirds. 'That's an amount which is absolutely not possible to sustain us,' he says. 'We're barely making ends meet now. We already had to move in with my brother because we can't make rent on our benefits.'
Losing Pip would also mean losing his entitlement to free prescriptions. Before Evans became eligible for these, the bills from his pharmacy were mounting: 'It got so bad that the NHS sent me a penalty charge.'
Thanks to Pip and its 'passport' to more help, Evans has been able to manage his health well in recent years – from orthopaedic bedding to travel to hospital appointments – but he fears the proposed cuts could cause a 'catastrophic relapse'.
'Being dismissed as a young person refusing to seek work, or someone who finds it 'easier' to live off benefits, couldn't be further from the truth. In reality, so many of us would love to work if we could,' he says. 'These cuts will just make a vulnerable group suffer even more.
Back in the 1990s, before an onslaught of ME, arthritis, fibromyalgia and a heart condition hit, Rebecca Jenkins was a care worker. Now too sick to work and relying on disability benefits, the 56-year-old is still caring – this time for her elderly mother, Susan.
At 88, Susan Jenkins has multiple disabilities: she uses a wheelchair because of arthritis and is currently in hospital after a hip replacement as well as being assessed for dementia. In their bungalow in Gloucestershire, Rebecca helps her mother with all aspects of daily living: getting her in and out of bed, using the toilet, cooking and shopping. The physical toll of one disabled person caring for another is heavy. 'It's knackering,' Rebecca says. 'If I overdo any physical effort, I'm in agony for days.'
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Jenkins is one of the many family carers who do not get carer's allowance. Because her mother often stays in hospital, Rebecca was advised by the Department for Work and Pensions that any caring payment would be stopped each time. Instead, the two of them live off Rebecca's Pip alongside other entitlements. Disability is expensive, so the cash does not stretch far. Hiring an adapted taxi to get Susan to the hospital in her wheelchair, for example, costs £70.
If Rebecca loses Pip, it would have a 'huge knock-on effect' for the family, she saysd. She would have to search for work to pay the bills, meaning she would have to pass her caring responsibilities on to the local authority. 'If I lose my disability benefits, my mum will lose her unpaid carer. Then she'll have to go into a nursing home. In my case, the cut will actually cost [the government] money.'
Pip is also a gateway for Rebecca to a catalogue of other help: from free dental care, free prescriptions and council tax reductions to car tax exemption to a railcard. 'I'll lose all of them when I'll be miraculously cured,' she deadpans.
The gallows humour masks her dread. 'It's like we live in fear of the whims of successive governments. I can't sleep at the moment, I'm so scared.'
When Nicola Herring heard about the upcoming disability cuts, she wrote to the social security minister, Stephen Timms, asking for help. Herring cares 24/7 for her 18-year-old son, Francis, as well as her young daughter. Cerebral palsy means Francis can only use his right hand, while his brain injury leads to regular seizures. 'I go everywhere with him because he can't be left alone,' she says.
Francis's father works full-time at a magazine but the family rely on Pip and Nicola's carer's allowance to – as she puts it – 'pay for the things Francis would not need if he was fully healthy'.
No help is available on the NHS for his conditions so disability benefits are the only way Francis can access treatment, such as osteopathy, physiotherapy and oxygen therapy. 'Pip has made his life so much more bearable. It's helped him learn to write and swim and make music,' says Herring. 'All these things bring joy to his life. And as a family, it's enabled us to hold on to hope for his future.' Both benefits are gateways to other support: Pip helps the family get accessible concert seats 'if we ever brave going out' – in the accessible area, staff are trained to respond to seizures – while carer's allowance means Nicola is able to collect pension credits.
Due to caring for Francis full time, Nicola has been unable to take on paid work. 'I did try before and loved being a dinner lady for a while, but even that was impossible to sustain because school kept ringing me to collect my son after seizures,' she says.
But without benefits, she would have to find work again 'to pay for everything Francis needs' and ask the local authority to care for him full-time. 'If the government goes ahead with these cuts, then new care homes are going to have to be available,' she says.
Nicola tells me what she emailed the minister: 'I love my son very much but caring is emotionally and physically draining. We can't take any more.'* Some names have been changed

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2 hours ago
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I have someone who comes in at about 6.30am and looks after her until 7pm when I get home, then she goes to nursery two and a half days a week. Outside of the free hours, childcare costs me about £17 an hour, which totals about £40,000 a year. Frankly, I'm very lucky, I've got lots of family around and my parents also make contributions towards the paid-for childcare. I would be paid £100 an hour for any extra shifts, or £125 if it were outside 7am to 7pm. But I would lose my personal allowance, I would lose free childcare hours and my tax-free childcare, and I would have to pay for childcare for my daughter when I was working. So it would cost me more money to work extra shifts than I would earn, it's bananas. During the recent strikes when I came in, it actually cost me money to help keep my department safe. There are always extra unfilled shifts, someone might be ill, or there's a clinic on evenings and weekends in a bid to reduce waiting lists. More people would do those, but it's not financially worthwhile. It's a slightly valid criticism that I shouldn't complain as much about childcare costs as I'm a single parent by choice, but it doesn't negate the fact that I would do more work and help the NHS out if the system didn't leave me worse off for doing so. James Preston, 57, an occupational health doctor from north London I'm not pleading poverty. I am in a very fortunate position. I'm single with no children, so I don't have the same financial pressures of some of my friends who have children and are still recovering from things like paying school fees. But the £100,000 rule just feels like a cliff edge. The fact that the marginal rate goes up to 60 per cent and then comes down again feels unfair and arbitrary. I have no problem with being taxed proportionately if you earn more money, but there is already a system in place for that with the 20 per cent, 40 per cent and 45 per cent for the highest tax bracket. To lose the personal allowance that is given to everybody feels like you are targeting a very specific demographic. I've had a salary just below the £100,000 mark, and when I was self-employed, I worked flat out to take my earnings above £100,000. If you earn over £100,000, you do just think: 'Why am I volunteering to add work to my diary if I am going to take substantially less in pay back home with me?' I've definitely made a conscious decision in the past to not earn over £100,000 to avoid paying the marginal rate. It's a concern for me that this is a disincentive for people to work. There is a shortage of people with skills and particularly marketable skills that command a higher income. It's a disincentive for these people who have the luxury to turn down work to keep under £100,000. Erica Jackson*, 36, from southeast London, who works for a sustainable food company We have one-year-old twins and because my salary is above £100,000, while my partner earns £70,000, we get none of the tax-free childcare benefits or the free hours from the government. My children go to a childminder, who they love, for just three days a week. Our yearly childcare bill is still £24,800, and would probably be about £18,000 if we got the free hours and other benefits. We are very fortunate, we earn well and I am really aware that there are lots of people in more difficult positions than us. But it shouldn't be one size fits all, and the £100,000 rule shouldn't be set in stone if you have two or three children going through childcare at the same time. I think it's unfair; we have friends earning £99,000 and they are much better off because they get the hours. • Why a £2,000 pay rise can cost you £12,000 It's not just the childcare costs either — with twins, everything hits at the same time. For example, you can't buy a car seat and pass it down. You have to buy two at the same time, two high chairs, two cots. We just couldn't have any more children, absolutely not — the only way we could do it would be to wait until they were in school. Because I earn £125,000 it means that I miss out on the full £12,750 personal allowance. I wasn't aware of these rules and when I was younger, I was just always pushing for a higher salary. I didn't realise it could get more difficult. We rent at the moment and pay £2,400 a month to live in southeast London. We are trying to save for a home but we are now having to dip into these savings just to get by each month. Philippa Henderson*, 39, from Hampshire I'm frequently told: 'Just put anything over £100,000 into your pension.' But the reality is my pension is in good shape, and I need every penny of my income now. I have two young children, but because I earn £130,000 a year I have lost all my childcare allowances. At the same time, we've got a mortgage that costs us £3,500 a month and my commuting is £600 a month. I'm the higher earner in my marriage, and it's annoying that if my husband and I both earned £90,000 we would pay less tax overall and still receive childcare help. I do not mind paying tax — in fact, I wouldn't want to live in a society where rich people get away with paying very little — but the £100,000 threshold is not the level of wealth it seems. We do not have a flashy lifestyle. We drive a clapped-out old car and go to Cornwall once a year. We do have a cleaner but she recently dropped her hours because her benefits have gone up so she doesn't need to work as much. Meanwhile, I'm working 50 hours a week and paying for any help I can get. I tell myself it's just a phase and it'll get easier when our children go to school, because we're going to be using a state school so at least that will be free. Darren John, 57, a pension consultant from London I now pay everything over £100,000 into my pension. I can't see a time when I'll ever take any pay greater than £100,000 as a salary. Working to pay 62 per cent of my income to HMRC is nonsensical. What makes it worse is when you see the government and others suggesting it's not fair that we get higher rate tax relief on those same pension contributions, even though we feel obliged to make them. It's a vicious circle created by a ridiculous tax system. I certainly don't have any issue paying my fair share but a tax rate of nearly two thirds cannot be fair in any reasonable person's mind. As an experienced pension consultant, I'm acutely aware of how we arrived in this position through successive governments, which makes me very cynical of the whole regime. Pensions are the one workaround, and these are now coming under attack by this government, which is greatly concerning. The temptation to move abroad is becoming an increasingly realistic option. *Names have been changed What other parts of the tax system need fixing? Share your thoughts in the comments below