How COVID-19 Is Shining a Light on U.K. Students With Disabilities

“Lockdown” — a word that can strike a number of emotions into anyone’s heart — fear, frustration, isolation, helplessness. Parents up and down the U.K. have found themselves thrust into a world of not being able to work or trying to work around the kids being at home all day. No childcare is available — social distancing put an end to that. There are no after-school clubs, no extracurricular activities or classes. No grandparents are on-call for an afternoon of respite.

And then there were the children facing no school for weeks on end. It’s drummed into us how crucial good attendance at school is, how much damage to a child’s education missing just one day can make. Now, thanks to COVID-19, our children have had months of disruption; weeks with little or no schooling, other than what we can provide (and I don’t know about you, but I didn’t sign up to be a teacher), or online learning that tries its hardest, but falls somewhat short of the educational experience our children deserve, and by law should receive. Isn’t it hard to stop them from being bored once the schoolwork is done, but they can’t go out anywhere? Did you relax your rules on screen time too? Thought so.

Then there’s your support network. Yes, you can chat with your family and friends on Zoom, or your counselor or colleagues, but it’s not quite the same, is it? You can’t pop out for a coffee or lunch with your bestie, and those much needed nights out with the girls are on hold for the foreseeable. When do you ever get a break from the kids? Just an hour to yourself?

Welcome to our world.

What you are experiencing since lockdown is what many parents of children with special educational needs and disabilities (SEND) go through all the time.

Many of us don’t work, not because we’re lazy or workshy, but because we simply can’t. The average income of a household with a disabled child in the U.K. is almost 25% less than the national average. And yet, it can cost around three times more to raise a disabled child.

We don’t have the same choices as you when it comes to child care, extracurricular activities, and even schooling. We can’t just enroll our children in the local school; we and our kids have to jump through hoops just to get an EHCP (Educational Health and Care Plan), and even then, if we’re successful, there is still no guarantee of a suitable school to meet our child’s needs. So what happens then? Well, either our children struggle in an unsuitable setting or they’re home educated by parents who already have enough on their plates. There is limited access to after-school care or holiday clubs that can support them and meet their needs, and all of this, plus having multiple regular medical appointments, makes holding down a job all but impossible.

Many, many kids with disabilities are missing a proper education all the time, not just during lockdown. Parents have a daily fight with the authorities, begging them to find suitable schools, and are left to fend for themselves with next to no support. Where is the outcry about these families?

For years parents have been shouting about the disparity between the education offered to their children, compared to what is expected for children without disabilities, yet nothing has changed.

Nobody wants to hear about the “special” kids. It doesn’t matter if their education falls well short of laws and expectations. I mean, it’s not as if these kids will grow up and actually make something of themselves, is it? (Sarcasm intended.) Yet, all of a sudden, the lack of suitable education that’s plagued the SEND world forever has crossed over into the mainstream, and now we’re worrying about children’s mental health and how this educational hiatus will affect them in the future.

Now we’re looking at parents and the effect this lockdown is having on their mental health and well-being. The lack of work, struggling on benefits, little to no practical support or respite, isolation, worrying about the future… This is normal, daily life for so many families with disability in the midst. Imagine a never-ending lockdown situation and you’re close to imagining what life is like for thousands of children and parents all the time. Can you imagine the emotional and physical toll this life takes? And that’s without the added worry about your child’s condition and how they’re affected, the sleepless nights, the cost of specialist support and equipment, the constant fear about what will happen when you’re no longer around to care for them…

One would hope the absolute car crash that is 2020 would help to shine a light on the world so many people have been unaware of until now.

One would hope that now with some kind of lived experience and empathy that people would have a better understanding of what families of children with disabilities experience every single day, and would listen to and help us more.

However, many of us know that’s unlikely. Once the pandemic is over, and life returns to some kind of normality for most, we’ll be back in the darkness once again.

Out of sight, out of mind.