Families with children who are labelled “school refusers” are planning to take legal action against the government to challenge rules on truancy that allow them to be fined and prosecuted.

A group of parents, working with lawyers, wants a judicial review of the school attendance regulations that label their children as “truants”.

The families say the severe anxiety that their children suffer from should be treated as a mental health issue, not an attendance one. In many cases, the pupils have underlying conditions, such as autism or attention disorders, which are not being properly supported because of cuts to special educational needs and disability (Send) budgets in schools and councils. A damning report published last week by the cross-party education select committee concluded that the government’s Send reforms were failing children and “setting local authorities up to fail”.

The problem is compounded by the crisis in mental health provision. Pupils with “school phobia” cannot obtain the medical evidence they need to be classed on registers as an authorised absence rather than a truant.

Using money raised through crowdfunding platform CrowdJustice, and with legal aid, the families are looking to mount a legal challenge against the Department for Education’s absence codes and guidance, which they claim discriminate against those with school attendance difficulties.

Nationally 783,425 pupils were classed as persistent absentees in 2017-18, with 325,685 of all pupil absences recorded as “more than 25 days”. Local authorities issued 260,000 penalty notices to parents for unauthorised absences in 2017-18, an increase of 110,000 on the previous year.

Not Fine In School (NFIS), an organisation that supports families with school attendance difficulties, has 8,200 members on its closed Facebook group, with an average of 24 new members joining daily since September. Beth Bodycote, founder of NFIS, said: “We have nearly 5,000 members posting on a daily basis. Their distressing stories repeatedly illustrate the lack of appropriate understanding and support for attendance difficulties.”

Facebook Twitter Pinterest Colette Reid and her son James, who is now 14. Photograph: Courtesy of Colette Reid

Colette Reid, 48, a social worker from near Manchester whose 14-year-old son James developed anxiety about going to school, said she has been though a nightmare over the issue. The teenager has an autism and ADHD diagnosis but started mainstream secondary school with no education, health and care (EHC) plan, a document that outlines the provision that must be in place to help a pupil, meaning he had no extra support in class or at break times.

As James’s school phobia developed, his absences were recorded as truancy and, according to his mother, teachers blamed her for his failure to attend. Despite trying to get support in place and explaining her son’s anxiety to teachers and council staff, his mother was fined £60 and then prosecuted . But after representing herself in court, she was given an absolute discharge by magistrates who said they “appreciated how difficult it must be raising a child like James”.

“When I came out of court, I burst in to tears because it was the first time anyone official seemed to understand. James is high functioning and didn’t cause any trouble in class so the school couldn’t see a problem,” said Reid. “But he said he felt like he was ‘in a bubble’ in class and his distress manifested itself at home in extreme episodes where he was out of control. He just could not cope with the big classes, noise and confusion of mainstream school.”

James is now being home schooled but attends a part-time college foundation learning course. He is in a class of 10, with a teacher and two assistants.

“He’ll go because it is totally different to school,” said Reid. “I was constantly told I wasn’t doing my job as a parent but unless those people live with a child with school refusal, they’ll never understand how tough it is.”

Fran Morgan, founder of Square Peg, one of the organisations involved in bringing the legal action, said: “The term ‘school refuser’ is controversial as these are children who want to attend school but are unable to do so for reasons outside their control.

“School special needs budgets have been slashed and cuts mean support staff are no longer there, waiting lists for access to the child and adolescent mental health service are unacceptably long, and the thresholds to qualify for any kind of help are unacceptably high. At the same time, academic pressure is being piled on pupils. It is a perfect storm and a lot of children can’t cope.”

Polly Sweeney, a partner at Irwin Mitchell solicitors which is acting for the parents, said the issue affected thousands of children and their families across the country. “We are disappointed that the Department for Education has not responded to the organisations’ request to meet and discuss their concerns,” she said: “As a result of the lack of progress, we have now been instructed by a number of families of vulnerable children with school attendance difficulties, to advise them on a judicial review of the current system as they now consider that legal action is the only solution to addressing the issues they are facing.”

A Department for Education spokesperson said: “No child should be taken out of school without good reason.

“The advice to schools is clear; they should authorise absences due to illness related to both physical and mental health.”