Children with special needs forced to stay at home and miss out on education. Councils spending scant financial resources on fighting parents in court instead of providing the services their kids need. An official report slamming one town hall’s provision as “dysfunctional”.

These horror stories are depressingly familiar to thousands of parents across the UK whose children have special educational needs and disabilities (SEND) and have been battling to access the education their kids need. Some are stuck in mainstream schools that aren’t suitable for them academically or socially; some are left unable to go to school at all.

Fiona Castle, from Bristol, calls it “institutional gaslighting” – professionals telling her she’s making too much of a fuss when all she’s doing is trying to get what her young son is legally entitled to.

“As a parent of a child that’s different, you’re always questioning whether or not you could be doing more,” she told HuffPost UK, “whether or not you’re making too much of a fuss.”

With councils pushed to the limit, families are having to fight for vital assessments such as education, health and care (EHC) plans that too often mean the difference between a child’s needs being met and being locked out of education completely.

An EHC plan is a legal document, decided upon by the local authority, that sets out a child’s special educational needs, and the help they’ll need – whether that’s a dedicated teaching assistant or a place at a specialist school – to meet them.

After receiving a request for an EHC plan, the local authority is lawfully obliged to complete the document within 20 weeks. The most recent quarterly figures show Bristol City Council completed not a single EHC plan within the mandatory timeframe. 

The full extent of Bristol’s issues with SEND provision was made crystal clear in December, when Ofsted released its long-awaited report on the way Bristol City Council had implemented reforms designed to help children with SEND.  

Although inspectors found a willingness to improve among council leaders, praising their “energy, enthusiasm, and determination”, there was significant criticism of the extent to which the local authority actually met the needs of children and their families. 

When it came to EHC plans, however, inspectors described the quality of the documents as “disturbingly poor”. “Many contain gaps, are out of date, or do not reflect the child or young person’s needs,” they wrote.

At later points, the report said: “Children and young people named in EHC plans are unlikely to have their needs met,” and deemed the entire process “dysfunctional”.

Of course, the effects of a child – often with complex needs – being locked out of an education system don’t just stop with the child themselves.

The lives of entire families are being disrupted; careers are brought grinding to a halt, finances start spinning out of control, and relationships can start to fracture. 

Fiona explained: “Quite a lot of us parents have been through a diagnosis process that’s been a bit of a fight, and then you have that same fight with a school who say: ‘Oh, no, he’s fine.’ Then you have your own local authority telling you: ‘No, he doesn’t need a plan.’ It’s at the point where I feel like I don’t trust my own judgement as a parent anymore, and that’s probably the thing that’s taken the greatest toll on my mental health.

“I’ve never had that before – I’ve always felt reasonably confident as a parent, as much as any of us can, but now I feel like I don’t trust my own judgement because you have so many people with letters behind their name telling you that what you’re doing is making a fuss.”  

Many parents who feel let down by the ECH plan process appeal against the local authority, sometimes going so far as to take legal action, and commit hundreds of hours to finding solutions for their children. 

But as Fiona explains, that option isn’t available to everyone – and vulnerable children may be falling through the gaps as a result.

Fiona said: “It’s endemic as far as I’m concerned. I’m a scientist by trade; I’m relatively well educated, and I have a computer at home.

“What about about single parents, or [parents who are] working 60-hour weeks on zero-hour contracts or speak English as a second language?

“How on earth are they supposed to navigate the system to find the right option for their child?

“It’s not technically criminal, but it feels criminal. The way deadlines are missed – it’s supposed to be 20 weeks, but we’re on 27 and I know people on 30, 40, 50 weeks – and there’s so little we can do.” 

Fiona has spent more than £2,000 so far trying to get an appropriate education for her son – buying educational aids to help him both at home and in the classroom and paying out privately for appointments with a child psychologist and speech therapists. 

But the financial impact is just one element of the toll the process has taken.

The stress of fighting for a proper education for her son has left Fiona struggling with her own mental health, at points leaving her close to breaking point. 

“This puts such a horrendous toll on families – it’s all my spare time, all I think about. 

“You’re always thinking: ‘I need to ring that person,’ or: ‘I need to follow up that report,’ or: ‘It’s been two weeks and I haven’t heard from that person.’

“I’ve become an administrator for my son’s life, but it shouldn’t be like this when you ask for help.

“It should be forthcoming, and you should feel like you can trust the professionals who are offering that help, but it isn’t – and at the moment we can’t.” 

It’s nearly 18 months since a group of parents took Bristol City Council to the High Court – an unprecedented case that saw them demand their own local authority reverse £5m of cuts to SEND funding – and win.

It was a ruling that inspired groups of frustrated parents across the UK. In the months since the precedent was set in August 2018 the High Court has seen a number of similar cases, with mixed rates of success for campaigners.

Sally Kent, also from Bristol, successfully went through a tribunal process after the council refused to carry out an EHC plan for her daughter, who has special educational needs and was in mainstream school.

She explained: “The SEND service in Bristol is absolutely on its knees. There’s been a failure of leadership. There’s been insufficient funding, and we’re now in a position where parents who are applying for these EHC plans are waiting 50-plus weeks. They’re waiting over a year in some cases, and it’s a statutory process that should take place in 20 weeks.

“The infrastructure’s not there, the planning has not been there, the political oversight [and] the funding from central government for sure has not been there, and children and young people in Bristol are suffering. And their families are suffering as well.

“They’re out of school, they’re five times more likely to be excluded than children who don’t have SEND, and many children aren’t getting an education because there’s just no place for them. That is inexcusable.” 

Of course, this is not just a Bristol problem – it’s a national one. Across the country 8,000 children with SEND are just waiting for a school place. 

As council budgets have been squeezed by central government, more and more local authorities are finding themselves struggling to support some of their most vulnerable families. 

That in turn has lead to an increasing number of families who feel as though they’ve been left with no choice but to fight the system themselves – often with the support of other local parents who have navigated the intricacies of the appeals process. 

A number of large support groups have sprung up online, mostly on Facebook, where parents can share experiences and information with one another. For parents unable to access legal advice, or who simply have nowhere else to look, they can be a lifeline. 

Gillian Doherty is a founding member of one such group, SEND Action, which has more than 3,000 members.

“It’s not just about the funding,” she explained. “It’s the complete wild west when it comes to accountability. I think the national tribunal figures are really revealing – there are local authorities that are losing 92.5% of cases, and they’re using money that should be spent on the kids to fight in court.

“It essentially acts as a deterrent against accessing services. The problem with that is it means that it’s only those families who are in a position to be able to advocate for their kids – so many of our families can’t because they can’t afford it, or they don’t have the capacity or the time. Their kids are sick. 

“It means that some kids who really, really need it are being denied access to support completely unlawfully.”

Many of the groups are local – Bristol, for example, has its own parents group with hundreds of members where parents and carers in the city can chat about their own specific experiences – but as awareness of the issue as grown, alliances between groups have formed. 

Gillian explained that SEND Action had partnered up with two other large parent groups to form grassroots umbrella group SEND Community Alliance. “We can work together to campaign for positive change, and try – whether it’s local authorities or the government – to make sure they’re adhering to our children’s rights,” she said.

“That’s something that has been really tricky because we feel like families have had to fight individually, and there’s a very clear systemic problem. 

“We would really like some of the people responsible to actually act in order to enforce those rights, so they become meaningful. That wasn’t happening before now.”

Back in Bristol, the council has promised change. 

A boost of £1.3m has been proposed for the SEND budget, part of which will be used to address the findings made by Ofsted and the CQC. 

At the time of the announcement, the city’s education chief Anna Keen said: “Like many other local authorities across England we are transforming a service which continues to see increasing demand while being critically underfunded by central government.

“Funding for SEND is a priority for us and we will continue to ask the government for fair and appropriate levels of funding that match our needs in Bristol.

“However, this is of immense importance and we must act now, so are looking to make the necessary adjustments in our budget to ensure we can fund the programme now and drive improvements for the future.”