They disappeared more than a year ago and many are still out of sight. When the pandemic hit, 53,000 under-18s in England with disabilities that made them vulnerable to coronavirus began to shield away at home.
Kept off school long after their classmates went back, and away from friends, they have found their childhoods put on hold. And while the vaccine rollout gave high-risk adults some reprieve in the new year, those aged under 16, who have not been eligible for any vaccine, are still living in limbo.
Yet we have barely heard a thing about disabled children’s plight through the coronavirus crisis – a silence that has not been helped by the faux-reassuring narrative that “no healthy child” has died from the virus. Now that the UK regulator has at last approved the Pfizer vaccine for 12- to 15-year-olds, this blind spot is becoming even more glaring.
The debate about immunising young people is centred almost exclusively on whether every teenager should be vaccinated in order to ease transmission. Clinically extremely vulnerable (CEV) children, meanwhile – who are desperate for protection themselves – are barely being mentioned.
I’ve spoken to many families with disabled children who have been living in fear over the last year. Parents going to work terrified they will bring the virus home to their child, or even quitting their jobs to protect them. Children who are shielding 24/7 at home, missing classes, socialising and routine. Some have had to choose between their education and their health, while others have had no say in it. I’ve heard from parents whose children have effectively been banned from classrooms because their disability means they’re unable to socially distance.
At the same time as missing school, children with disabilities have also had respite care and community schemes pulled; a survey by the Disabled Children’s Partnership found three-quarters of families with special needs had lost out on care and support services during lockdown.
It is hard to imagine politicians and the media greeting this with a similar lack of interest if it was happening to “normal” children. There is much concern about the impact on pupils of missing months of school, and rightly so – but there’s almost no recognition that some disabled pupils have missed an entire year, with no plan as to when they can return.
Disabled pupils are already less likely to get A* to C grades than their non-disabled peers owing to multiple structural barriers. The special educational needs and disabilities (Send) system was “in crisis”, according to the Ombudsman, before the pandemic threatened to push their life chances further back. This is only exacerbated by the fact that families with a disabled child are more likely to be in poverty, so often can’t afford a laptop or broadband for home schooling, let alone the complex disability support their child needs.
Ministers appear to be doing little to help bring disabled pupils back to classes. Even as the Delta variant of Covid spreads in schools, the government has dropped its requirement for secondary pupils to wear masks in class – much to the ire of teaching unions – – while the number of coronavirus tests being done in secondary schools is reportedly decreasing.
It is striking that Britain still has no plans for inoculating high-risk children, while other countries such as the US and parts of Europe have already made significant gains in vaccinating all teenagers. Contact, the UK charity for disabled children and their parents, tells me it is “surprised” that the Joint Committee on Vaccination and Immunisation (JCVI) thinks that “even CEV children are low risk, after they have been asked to shield for many months”. Data from the US shows that nearly a third of teenagers hospitalised with Covid this year required intensive care, and 5% required mechanical ventilation, while children with conditions ranging from congenital heart disease, diabetes, asthma, to sickle cell disease, could be at increased risk for severe illness from the virus.
There has long been concern that Britain’s “age-based” rollout has failed to fully recognise the risk facing disabled young people; at the beginning of the rollout, many younger disabled adults had to wait for a jab while healthy older people were given priority.
The JCVI is currently considering whether to include teenagers in the vaccine rollout, but in doing so it must prioritise the needs of those with disabilities. If it is decided that teenagers aren’t eligible for a vaccine, an exception should be made for any who are clinically vulnerable. If all teenagers are included in the rollout, CEV pupils should be at the front of the queue, just as CEV adults were. There is no reason this cannot be done alongside other priorities, such as giving jabs to children in variant hot spots such as Greater Manchester and urgently donating vaccines to adults in developing nations.
After the hardest of years, children with disabilities and their parents deserve action as soon as possible. Every day treading water is another day where teenagers are struggling at home away from friends and teachers, anxious about how to stay safe. There is one lesson that should not have to be taught: disabled children’s lives are worth just as much as anyone else.