With the end of the independent living fund, the basics of dignity and safety for severely disabled people just aren’t being met
“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.”
“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.