European parents with British children who need full-time care dread being removed from the UK, as time runs out to clarify their status

Life was hard enough for Ivana Bugler before the EU referendum. The 29-year-old Slovakian divides her time between caring for her two autistic sons, aged eight and seven, and her husband Kevin, who struggles to breathe due to the after-effects of radiotherapy.

But since June 2016 she has had a new worry: her status in the UK. Next week it will be a year since Theresa May announced that the government would create a settled status for EU citizens “living lawfully” in Britain.

Yet Bugler, like many EU nationals who are full-time carers for family members, is worried that the Home Office will deem her to be an illegal migrant, because she has not been working or studying and does not count as self-sufficient. As the months tick past, her anxiety grows.

“I talk about this with a friend who also has an autistic son who is Czech,” she said. “Sometimes we’re crying our eyes out – what is going to happen? Are they going to separate us? It’s heartbreaking.”

“People say ‘Oh you are married to a British man, you’ll be fine’ and then you look into it and discover, no not really. It doesn’t make any difference whether you have British kids or a British husband.

“It’s happening to people from non-EU, so why couldn’t it happen to people from the EU? She added: “What makes me angry is when there was a campaign for leave or remain, nobody was talking about the issues these mixed families would face.”

Ministers and Home Office officials have said they will take a “pragmatic approach”, which migration experts say should mean that all 3.4 million non-Irish EU citizens in the UK, except those with criminal records, would qualify for settled status. But campaigners point to the experience of Windrush-era migrants and the thousands of so-called “Skype families” – separated by the Home Office because the parents of British children do not meet visa requirements – as evidence that the rhetoric does not always match the reality.

The lack of any firm details is unfair to EU citizens, the3million, an advocacy group, said. Nicolas Hatton, co-chair of the3million, said: “Yet again by delaying the release of the details on citizens’ rights the government is keeping tens of thousands of the most vulnerable and their families in a continued state of worry and uncertainty.

“We are calling on the government to share this information with us now to allow us to work together with the Home Office to ensure that not one single EU citizen is left behind.”

Uncertainty about their future has affected EU citizens in different ways: 130,000 left last year, the highest number in a decade, while others have tried to get permanent residency – the only way to become a British citizen. Neither option is available to carers who look after their British relatives. To qualify for permanent residence they have to demonstrate self-sufficiency, which means producing “comprehensive sickness insurance”, a requirement quietly introduced by the Home Office in 2012. Some apply anyway and are turned down.

Last week Diane Coyle, a Cambridge University economics professor and a former government immigration adviser, tweeted: “Just heard Home Office denied residence to my French neighbour – here 17 years, married to a British man, caring for her severely disabled British daughter. I am so ashamed of us.” Asked why her neighbour had been refused, Coyle said: “She hadn’t been working – because looking after her daughter.”

Debate about the future of EU citizens in the UK and the 1.2 million British people living elsewhere in Europe has focused on those of working age, students and pensioners. Carers are not the only people at risk, according to Madeleine Sumption, director of Oxford University’s Migration Observatory. There are many people who may slip through the net, however well-intentioned ministers may be – children in care, about 60,000 people aged over 75 who have no internet access, 50,000 victims of domestic abuse and other people on the margins of society.

“The withdrawal agreement has a set of requirements which if implemented in a restricted way would mean that very large numbers of people would be ineligible,” Sumption said.

“Will carers still have trouble getting into the system even though they’re eligible? Potentially. It’s quite difficult to know exactly who will struggle with evidence.

“We think there will be a hard core of people who will have exceptionally little evidence: people who don’t have a bank account, people who haven’t been working and who don’t have residence information, nor work,” Sumption said. “If you’re a carer and you’re not working then that puts you at a higher risk.”

The lack of detail is highly concerning, according to Axel Antoni, a spokesman for the3million. “As long as it’s not on paper, it’s just warm words,” he said. “The system is very, very cruel, the Home Office is very, very cruel. They apply exactly what is written down and what has been given to them as an instruction – Home Office regulations and parliamentary acts – everything else doesn’t count.”

Antoni said the details were now due to be published just before parliament goes into recess for summer. “When it comes out MPs will be on holiday and there will be very limited time to scrutinise it, go back and challenge it. This is the detail that people like carers are waiting for. We have been promised it and again it has been kicked down the street and we are still in the same amount of uncertainty.”

A Home Office spokesman said it would use “existing government data” to check eligibility. “We have agreed with the EU that the eligibility criteria for settled status will be the same as, or more favourable than, for acquiring permanent residence. The fact that a person is claiming carer’s allowance will not prevent them from qualifying under the scheme.”

Case study 1: ‘Look what happened to the Windrush families’

Sabine Schuster-Nussey left Germany 33 years ago and now lives in Chelmsford with her British husband and son Daniel, who has Down’s syndrome, and two daughters.

“It’s a bloody mess. The more things come out like Windrush, the more precarious I feel. I can’t apply for permanent residency. Week by week and month by month you realise how much this is going to affect us as a family and as a country as a whole. It has split our family into three. There’s me with a German passport who can’t apply for a British passport, my husband who can’t apply for a German passport because he’s not lived in the country, and Dan who could apply for a German passport but his life is here. Everything is here, his support system is here and, to be honest, if we were to move to Germany, I think it would kill him. I’m hoping that access to the NHS and care later in life will be guaranteed and my pension guaranteed but am I 100% confident? No I’m not.

“Look at what’s happened with Windrush. These people were British, they’d worked here, they had a paper trail over donkey’s years and some got deported and their lives were made extremely difficult.

If I could have dual citizenship I would. I don’t want to give up my German citizenship and now less than before, the way this country is going is frightening sometimes. I look at German history and how a mass population was manipulated and I do see parallels to that, and it frightens me. It’s a question of cost as well – you need several thousand pounds to hire an immigration lawyer and it’s just something we can’t afford.”

Case study 2: ‘I fear for my daughter with Asperger’s

Facebook Twitter Pinterest Isolde Lekens is in the dark about the implications of Brexit for her family’s future. Photograph: Handout

Isolde Lekens moved from Belgium to Kent nine years ago to be with her British husband. They have an eight-year-old daughter together, and she has two daughters, aged 17 and 15, from a previous marriage in Belgium.

“My oldest is going to be 18 this October and then she’ll be seen as an adult, which is very worrying for me because mentally she’s not an adult. She’s got Asperger’s and very extreme social anxiety. She couldn’t even go to an interview to do the talking herself – she simply wouldn’t.

“And because she’s not British, that’s a worry for me, because how will they treat her?

I feel like I have tried to be a good mother to my kids and am now being punished for it, as it has been said repeatedly that those who contribute have nothing to worry about, but others might.

It’s the uncertainty of everything. Because my husband is British, it’s not as if we can just move to Belgium. It would be a massive cultural shock to my children as well. All the worrying is not doing me any good.

We know about settled status now, but I’m not entirely sure what it means. There’s nothing on paper, there’s nothing been put down for us to know what it is. Do you lose any particular rights? Does life stay the same? What are the practical implications? I’ve got no idea.”