Disabled children like my son have to get to school. Who should pay for it?

Good morning. For most kids, getting to school is a matter of a walk or a bus ride. But for some, the journey is more complicated – and, for councils, the accompanying financial burden is becoming unsustainable.

Yesterday, the BBC reported that council spending on school transport for children with special educational needs and disabilities has rocketed in the last five years – and now stands at £1.4bn a year. That is only likely to grow in the future.

These costs are so large because the government expanded the group of children who were entitled to free travel a decade ago – without giving the councils the money to pay for it. Coupled with a precipitous general decrease in central government funding since 2010 and a range of other pressures on budgets, the bills are threatening to drive councils into bankruptcy.

Some councils are taking drastic measures: yesterday, a group of families protested in Leicester over the local authority’s decision to scrap free transport for pupils over 16. Now a group of councils is suggesting that the transport offer is no longer affordable, and must be subject to means-testing to make ends meet.

Is that a reasonable request to make of better-off families – or is there something larger at stake? Today’s newsletter, with Guardian columnist Frances Ryan and a special guest appearance from my very charming son, is after the headlines.

Five big stories

In depth: ‘Nobody could argue this system is working as it should do’

We moved house last summer, six weeks after our son was born. One of the nicest things about our new neighbourhood was the primary school just round the corner. Little kids poured past our front door each afternoon, jabbering away to their parents about their days. Even if they occasionally got underfoot as I took the pram to the pub, I liked the idea that he would be among their number in a few years. It felt rooting: a reassurance that this was our home.

One night soon afterwards, for reasons no one can adequately explain, our son had a cardiac arrest in his sleep, and stopped breathing. He very nearly died, and spent several days in an induced coma at Great Ormond Street hospital. But he survived. At nine months old, he has a surprising taste for prunes, a passionate romance with a fluorescent plush tiger, a great big goofy smile, and a diagnosis of evolving cerebral palsy. I will fight anyone who suggests that he is not the greatest baby in the history of the world. Yes, I include your baby in that analysis.

The school is still there, of course; I can see the top of it out of the window as I send you this email. But our son will need a wheelchair, and it’s a four-storey Victorian building with no lift, so it isn’t there for him. He’ll have to go somewhere else one day, and we will need to get him there. This is not just a matter of financial cost. Now, the building looms over us as a reminder of what he lost. It feels like a message that, in some way, he doesn’t quite belong.

All of which is to say: when it is suggested that we might have to pay a bill that no non-disabled person would ever face for our son to exercise his fundamental right to an education, I declare an interest. But it’s everyone’s interest, really. Most of us will be affected by disability, whether our own or that of someone we love, sooner or later. As people often remind you when you enter this universe, disabled and non-disabled people aren’t discrete groups – they’re often the same people, at different points in their lives.

It is also true that the cost of transporting children with special educational needs and disabilities (Send) to school has become unmanageable for councils – rising from £728m in 2018-19 to £1.4bn in England today. So who should foot the bill?

What families are entitled to

Statutory guidance to councils explains that they must provide free transport to Send children who cannot walk to a suitable school. If there is not a school that can meet their needs locally, that might mean a minibus or a taxi. If the child has sufficiently complex needs to qualify for an education, health and care plan (ECHP), a legally binding document that sets out the support to which they are entitled, that is likely to name a specific school that they should attend – and, particularly in rural areas, it might be some distance from their home.

That is a potentially very expensive provision, costing councils thousands of pounds per child each year. But it should be set in context of not just the child’s right to a decent education, but the significant costs that their families will already be facing.

“Even when it’s working well, the state never covers all the costs of disability – not even close,” said Frances Ryan. She points to the disproportionate impact of the austerity era on people with disabilities, from benefit cuts to increases in social care charges. The charity Scope estimates that households with at least one disabled child or adult face an average extra cost of £975 a month – with disability-related costs amounting to 63% of a typical disabled household’s income after housing.

These pressures are naturally most severe on those who have the least to begin with. “But even those with higher wages often have to spend any disposable income meeting basic needs,” Frances said. “If you’re middle class and your children aren’t disabled, you get a fortnight in the south of France. If your child has cerebral palsy, you stay home and save for their wheelchair.”

Why the cost to councils is rising

The bill for local authorities is very large, and getting larger. On average, the BBC reports, the annual cost of transport per child has risen from £6,280 to £8,299. The increase is driven by a 170% rise in the number of ECHPs granted since 2015. For many councils attempting to manage vastly reduced budgets since 2010, these increases are a central factor in their slide towards bankruptcy. Meanwhile, one in four county bus services has vanished over the last decade, and the maintained special school sector is largely full.

Despite all this, there is a concerted and, frankly, gobsmackingly offensive attempt on the right to cast the increase in ECHPs as evidence of a certain kind of sharp-elbowed parent’s attempts to game the system – as if anyone in their right mind would go toe-to-toe with a council bureaucracy if they had any other choice.

A Sunday Times column last year by Robert Colvile, director of the rightwing thinktank the Centre for Policy Studies, described an ECHP as a “golden ticket”. Michael Gove (above) said that councils were having trouble distinguishing between “deserving” cases and “those with the loudest voices, or the deepest pockets, or the most persistent lawyers”. The government has quietly told councils to target a 20% reduction in the number of new ECHPs.

The truth is that Gove was education secretary when the government expanded access to ECHPs without giving councils the money to pay for it. And, as John Harris laid out in this enraging column in January, the reason children have to take a taxi or a minibus to school is that the mainstream system is no longer capable of accommodating them locally.

The argument for means-testing

Into this crisis comes an offered solution, from the County Councils Network – the body representing local authorities in county areas. “Nobody could argue this system is working as it should do,” the group’s leader Tim Oliver said. “But throwing money at it – even if that money was available – isn’t actually the answer.” He suggested “a grown-up conversation” about means-testing as a way to reduce the bill to the state. That echoes a CCN report published in November.

Proponents of this idea argue that many other benefits are means-tested. And, as Gove’s comments imply, it arrives at a time in which the idea that many are milking the system is gaining traction. But most other benefits do not come into a landscape in which a family will already be facing so many other additional costs through no fault of their own.

In any case, said Frances, “it’s a myth that it’s really easy to get support as a disabled person in the UK … the process can be hugely arduous”.

“I’ve spoken to disabled families who have chosen to not ask for support or try to pay for it themselves, despite the fact they can’t afford it, because they just couldn’t face the application process. When a disabled person prefers to go into debt than deal with the British state, I think we’ve got a problem.”

Why universality matters

There is, in fact, a broadly accepted principle that some provisions of the state – like NHS care, free education, and the state pension – are part of the social contract: something that we are all entitled to because of what we put in over the course of our lives. Saying that benefits for children with disabilities and special needs don’t fall into that category implies that meeting their basic needs is a demand above what they have a right to expect – a way of getting ahead, instead of a small step towards catching up. “It perpetuates the idea that disability – and disabled people – are this unique burden,” Frances said.

“Means testing is the beginning of the decision that says support for disability is not an entitlement but something up for debate that can be chipped away at with a ‘good reason’,” she added. Start chipping away at that, and “it’s not long before the whole principle falls”. Meanwhile, removing universality also hurts the worse off: as Owen Jones notes here, more than a third of families eligible for the means-tested pension credit do not claim it.

Our son is lucky, and not only because he’s so roguishly handsome: his parents both have salaries well above the national average, progressive employers and families who can help with the exorbitant costs that are the consequence of the state’s inability to provide everything he needs.

Even with those bills, I’d happily pay more tax in exchange for a commitment to the idea that his disability does not add an asterisk to his fundamental rights. What I’d really give anything for is for him to go to that school around the corner. But if he can’t, it doesn’t feel selfish to insist on the principle that the state owes him exactly the same commitment to his education as any of the children who can.

What else we’ve been reading

While overseeing the construction of an airport in the remote island of Saint Helena, Annina van Neel (above) found the remains of thousands of formerly enslaved Africans. Watch the Guardian documentary Buried for the full story. Nimo

The great Nick Cave – singer-songwriter, author, screenwriter, thinker, agony uncle – is now also a ceramicist. In this profoundly moving interview, he tells Simon Hattenstone that his work continues to be suffused with the death of his sons: “These losses are just incorporated into the artistic flow and they move in a direction that is beyond your capacity to rein in.” Archie

Michael Sainato follows the story of a group of residents who formed a tenants’ union after they found their apartment buildings had toxic levels of lead. “We’re not just going to keep moving from house to house because landlords can’t be responsible for basic standard standards of living,” Katy Slininger said. “We are fighting tooth and nail on a daily basis just to have clean air.” Nimo

I spent a happy five minutes scrolling through the winners of the World Nature Photography awards 2024. Do not mess with the black frogfish under any circumstances, is my main takeaway. Archie

For an infuriatingly comprehensive piece of writing on the last 14 years of Conservative rule in Britain, read Sam Knight’s New Yorker (£) deep dive that lays bare all the failings of the last decade and the consequences that we have to live with. Nimo

Sport

Football | The former England captain Steph Houghton (above) is to retire at the end of the season, she announced last night. The 35-year-old Manchester City centre back won 16 domestic trophies and played for England 121 times, including at four major tournaments.

Football | Chelsea progressed to the semi-finals of the Women’s Champions League despite being held at Stamford Bridge by a stubborn Ajax. Mayra Ramírez fired the hosts ahead before Chasity Grant levelled in the second half to ensure parity on the night. It was a result that mattered little, however, as Chelsea went through 4-1 on aggregate.

Rowing | The University of Oxford’s rowing coach has called the pollution in the River Thames a “national disgrace” after high levels of E coli were found on the Boat Race course. Sean Bowden, who has coached Oxford since 1997, also admitted that the health risks could also stop the tradition of the winning cox being thrown or jumping into the river.

The front pages

“Outrage over record discharges of sewage into rivers and seas” is the Guardian page one splash today, while the i has “Labour attacked for ‘feeble’ plan on Britain’s sewage crisis”. “Totally failed” – that’s the Metro on the child protection failures that led to Finley Boden being murdered by his parents. “Could Rishi gamble on a summer election?” asks the Daily Mail, while the Times carries some unlikely sounding political praise: “Johnson had right idea on levelling up, says Starmer”. “Day I lost my Paul” – it’s one year since Paul O’Grady died, the Daily Mirror reminds us. “King calls for more kindness in time of need” – the Daily Express previews Charles’s Easter message, of which the Daily Telegraph says “King thanks public for extending ‘hand of friendship’”. The top story in the Financial Times is “Blockbuster M&A begins to recover after a long drought for dealmakers”.

Today in Focus

Cartoon of the day | Ella Baron

The Upside

A bit of good news to remind you that the world’s not all bad

When Jade Angeles Fitton’s relationship imploded and her partner drove off into the distance, she was isolated, depressed and her confidence was shattered. The end of that relationship however marked a new start for her: instead of escaping from that home in the middle of no where, she stayed and spent most of the following year alone.

Out of a tumultuous relationship that caused her grief, Fitton was able to find comfort in solitude and felt safe by herself. Life became more vibrant and vivid: “The possibility of a quiet life, a new life in which I could exist without misery, opened up before me like a revelation,” she writes.

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