Disabled people are struggling to hire carers to help with vital daily tasks due to low pay and Brexit, the Observer has been told, with ministers refusing to ease immigration restrictions to address the crisis.

According to a report published earlier this month, an estimated 70,000 care users employ around 100,000 live-in carers and personal assistants (PAs) through public funds, via a system known as direct payments, to assist with daily tasks such as cleaning, personal care and transport.

The Observer has spoken to disabled people and care agencies who say the supply of carers has dried up, leading to unmet care needs.

“Normally we recruit over 100 a year. Currently it’s running around 50,” said Peter Henry who runs Origin, which provides carers for people who, like him, have spinal injuries. “Things dropped dramatically after 1 July, which is when the settled status thing kicked in fully.”

EU citizens and EEA nationals who had started living or studying in the UK by 31 December 2020 and had been in the country for at least five years could apply for settled status before the end of June. The number of people eligible meant there was a huge backlog in processing cases.

“When two-thirds of your live-in care workers are overseas nationals – from EU and Australasia normally – then that gives you a real problem. We’re turning clients down, disabled British clients, every day. [We] yesterday turned three clients away – and they’re people desperate for care,” said Henry

Early this year, campaigners led by Disabled People Against Cuts wrote to the government, urging it to create new flexible immigration routes for care workers in order to prevent a “social care ticking time bomb, which will result in a devastating shortage of skilled, qualified care workers”.

Home Office minister Kevin Foster rejected their demands, and said “the government will not be introducing an immigration route allowing employers in any sector to recruit more generally at or near the minimum wage on a global basis,” and British workers should fill the gap.

Katy Etherington, a care user who runs PA Pool, an online database of personal assistants, said more British people had signed up “but that hasn’t really made up for the deficit of Europeans that aren’t coming to the site any more”.

She says that post-Brexit immigration restrictions have caused the drop-off. “Unless they’ve already worked here, they can’t actually get a visa to work here as a PA any more.”

Jay Crawford moved with his wife and their young son Jasper from Manchester to Cheshire last year due to a lack of accessible housing in the city. He has a spinal injury and his wife is also disabled. While his personal assistant stayed on – by way of a 45-mile round trip – they were no longer able to rely on care support from his family.

After six months of wrangling, his new local authority, Cheshire West, agreed this February to fund an additional carer. But in that time, the supply of carers had dried up. They have struggled with unmet needs throughout this year. “My wife’s missed things like medication prompting, showering, support with making Jasper’s dinners – just small things that on a daily basis become a wider problem.”

Between February and May, they had a carer only two days a week – meaning they could only shower twice a week. “Imagine if you could only shower two days a week because it wasn’t safe for you to do so. It’d be crazy,” said Crawford.

He thought he had finally managed to hire a new carer recently, only for them to withdraw at the last moment to take a job outside the care sector – one offering better terms and higher pay. Care users funded by direct payments from cash-strapped councils or the NHS are heavily restricted in the pay rates they can offer. Recent wage inflation in other sectors facing staff shortages has compounded the problem.

Anne Pridmore, who has cerebral palsy, lives in Leicestershire. She has been trying to recruit carers as part of a rota but has only had two applications in three weeks – she used to get at least 20 people seeking employment in that timeframe.

“In my neck of the woods, it’s nothing to do with Brexit because we don’t get many eastern European people applying for the job,” she said. “But I live in quite a rich market town. You pay more to walk a dog than you can pay a carer.”

With the money she receives in direct payments, she can afford to pay GBP9.50 an hour up to 11pm and then minimum wage for an overnight sleep-in shift. She said local dog walkers are paid GBP15 an hour. “When you think of the job description for somebody to come and work for me, it’s a lot of responsibility and wages don’t reflect that.”

A Home Office spokesperson said: “Employers should focus on domestic job seekers first, providing training needed to take up roles in social care and the rewarding packages these workers deserve, rather than turning to immigration as an alternative.”

The spokesperson added that the independent Migration Advisory Committee has been commissioned to review the impact of ending free movement on the adult social care sector.

“People are really scared. They’re terrified that their lives are going to be reduced to just literally existing,” said PA Pool’s Etherington.

“We’re talking about basic things – going to the toilet, having something to eat or drink, getting up out of bed, getting into bed. So if people can’t even do that, they can’t get support to do that, what will happen to them? They just can’t do it themselves.”