“Being alone for hours is hard,” says Luke Davey, 39, from his bungalow in rural Oxfordshire. “I can’t take myself to the toilet. I can’t get a drink. Everyday things are impossible for me.”

Luke is quadriplegic, has cerebral palsy and is registered blind. But – in an indication of how deep Britain’s cuts to disability support now run – he has watched his funding for home carers gutted in a year. His mum, Jasmine – who is 75 and has cancer – has to fill the gaps: trying to make sure Luke’s not left by himself, making him meals, and lifting him from his wheelchair into the hoists fitted around the home.

The cancer means Jasmine has had repeated operations to remove tumours from her arm, and it hurts her to move Luke. “I keep thinking of him as my little one,” she says. “But he’s 14 stone.”

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“Social services keep saying ‘you shouldn’t be doing it,’” she says. “But they also say, ‘We can’t afford any more care assistants.’”

To understand how the Daveys could be left like this, we need to go back a year, to when the government axed the independent living fund (ILF) – a standalone fund that enabled thousands of severely disabled people to live independently. The money – and full responsibility for care – was transferred to cash-strapped local authorities.

To use Jasmine’s words, it’s “caused chaos”. For 23 years, it was the ILF and Luke’s local authority, Oxfordshire County Council (OCC), that jointly funded his care: a team of personal assistants rotating over 24 hours to help him live independently. But with the ILF scrapped, and responsibility left solely with the county council, Luke had his care package cut almost in half. That’s the equivalent of six hours support a day.

He’s been given little word on how he’s expected to get through the hours alone: to drink, use the bathroom, or move. At one point, he was told a solution would be to start using a tea urn, despite the fact he can neither coordinate his hands nor see it properly. “He’s quadriplegic and registered blind,” Jasmine says.

Facebook Twitter Pinterest Luke at his home in Burcot, near Berinsfield. Photograph: Ed Nix / Oxford Mail

His mum, who's 75 and has cancer, has to fill the gaps. Luke needs two care assistants. But there's no money to pay them

A proper care package means support to see friends, to go to the park, browse in a shop – as Luke puts it, “If you can’t live a decent life, what’s the point?” – but currently the basics of dignity and safety aren’t even being met. To ensure he’s not left alone, unable to see or move fully, Luke needs two more assistants. But there is now nothing to pay them with.

After the ILF ended, Jasmine used a freedom of information request to OCC to check the council had received the funding. “It had,” she says. “But they weren’t using all the money for Luke’s care. Legally, they don’t have to.”

When the government closed the ILF, it refused to ringfence the money transferred to councils, so they had no legal duty to spend it on the disabled people like Luke.

To anyone who relies on that funding, such a move would always be worrying – Luke says it made him “a wreck” – but in the current climate of threadbare social care and tightened council budgets, it was asking for disaster.

“Oxfordshire county council has had their budget cut by millions,” Jasmine says. “Councils are struggling because of the government. Homelessness, children’s centres … It’s not just Luke, it’s anyone with needs.”

Last month, Luke and his mum got a glimmer of hope: they won permission to launch a judicial review of the cut to Luke’s care plan. It’s provided some respite – the high court made a “interim relief” ruling, ordering OCC to increase Luke’s funding until the final hearing later this year – but they are clearly still struggling.

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“Mum says she’s fine,” Luke says, “but y’know … she’s not well herself.”

Perhaps the worst part of it all is that, for Luke – and the many calling for the return of the ILF – this situation was entirely predictable. Before the ILF ended, the likely impact was clear: a risk of severely disabled people left without “any quality of life”, deprived of their personal assistants, or even forced into residential homes. Indeed, the government’s own research admitted as such.

As Jasmine puts it: “It was running like clockwork for 20 years. Why do it? It’s not about care. It’s about the money.”

As we finish talking, I ask Luke how he’s feeling about going to court. “I’m nervous, really nervous,” he says. “But I have to do it. If I don’t, God knows what will happen to me or my mum.”