Good examples rarely make the news, or at least that often seems to be the case, especially when Local Authorities are involved. But in amongst the worry and frustration around how the Coronavirus Pandemic has impacted people with learning difficulties, and young people in particular, one London Borough has revealed that it has been able to offer some extra provision.

A Freedom of Information Request submitted in March to Barnet Council asked a number of questions pertaining to educational resources provision during the pandemic, and in particular the funding allocated to disadvantaged pupils and those with SEN. While the Council’s response left some questions unanswered, the figures relating to SEN are an encouraging development.

Along  with the SEN catch up premium, already being provided at three times the amount for standard pupils as per Government stipulation, Barnet Council related how it had been able to issue £5,000 per school as a lump payment, to ensure adequate provision to its prioritized pupils.

This was siphoned directly from the council’s Contain Outbreak Management Fund, a government stipend. While the COMF has an extremely wide purview as to its appropriate uses (with some LAs using it to fund shopping for those shielding, for example), the Council’s explicit provision of such money for the purpose of providing for those young people with learning disabilities and extra needs is surely a welcome move.

The Lockdown procedures put in place by the Government in order to contain the COVID-19 Pandemic put enormous strain on all caretakers and parents, but particularly those who have responsibilities for young people with SEN and Autism. Last April law firm Bindmans LLP even sought to take legal action against the Government for limiting the ability for caretakers to provide their wards with the exercise and activity required to manage their conditions.  

Posters on Mumsnet, perhaps the most (in)famous parenting forum in the UK, related these experiences first-hand throughout the UK’s lockdowns, and looking back on them provides a barefaced insight into this period and the tribulations experienced by many.

• User NotEver0 related how she found herself having suicidal thoughts regarding herself and her severely disabled son when his college closed during the pandemic. The stress of having to look after a young person requiring “24 hour supervision and self-care assistance with everything” left her sleeping most of the day when he eventually did return to college. She emphasised how sorely her son required routine, something that the pandemic had made extremely difficult.

• A different, but no less unpleasant account was offered by SENandSENsibility, who told the forum for herself and her partner the stress of having to look after their young son with SEN while balancing an unequal workload had led to enormous rows and tensions. She was left unsure of how best to address the resentment that had built, and was at a loss as to seek outside help that could provide for his extensive needs.

• Newyeary bemoaned how her 10 year old son on the Autistic Spectrum had already had his mental health noticeably decline with the intermittent schooling that he had been receiving, a state of affairs that had reached a new low as the schools lessons were due to be moved permanently online, owing to a lack of staff. The young man was an only child, with no friends outside of the classroom.

This is an interview with Megan, 24,  a Lecturer in a Further Education College for young people with Profound Multiple Learning Difficulties (PMLD). We discuss the effects that the pandemic and the lockdowns have had on those in her care.

• If we start off with a little introduction from yourself, what your role is with regards to working with people with SEN/PMLD?

I am currently working as a Lecturer in a Further Education College for adults with profound learning disabilities. I have only being doing this role for 2 months, before that I was working as a Learning Support Assistant in the same college.

• How long have you been doing so?

I’ve been working as a Learning Support Assistant since April 2020.

• What would you say have been the primary effects of the pandemic on young people with these conditions? What has changed for them?

I guess I have a smaller insight into the exact changes that have happened for my learners as I didn’t start working in the college until the pandemic had already begun. However I really have noticed huge differences between periods when we have been in harder lockdowns and how things have been beginning to change since restrictions have been easing. I think the first real issue, like with everyone, is the lack of access my students have had to community groups and centres. It’s something that everyone finds hard, but for people with pmld it’s particularly damaging because socially transitioning back into community settings will be harder post pandemic. Pmld learners require a lot of repetition in order to retain knowledge. So having gone so long without accessing community venues means that they are going to face a lot of anxiety and will have to ‘re learn’  how to do it, which can be a long process. Furthermore a lot of my learners haven’t been able to have their full therapy routines in place. For example a lot of my learners require hydrotherapy for either physio or sensory needs, which they haven’t been able to access. This has had a big impact on their physical health and ability to self-regulate etc.

• Could you give an example of one of these young people and how they have been affected?

I guess a key, kind of universal example which I have seen in a few of my learners would be a clear weight gain. A lot of pmld require gyms, community centres, manual handlers, to have the space/feel comfortable enough to exercise. So without this a couple of my students have had  clear weight gain. For two of them this has had an impact on their relationship with walking as well as their ability to walk. After the winter lockdown I have noticed they require a lot more persuasion and both emotional and physical support to get out of their wheelchairs. Some refuse point blank. Long term this could result in loss of the ability to even walk at all, which is real scary!

• How present do you feel young people with SEN/PMLD have been in the public consciousness with regards to the pandemic?

I don’t feel like send people have been in the public consciousness at all in regards to the pandemic. However it’s not really surprising as I feel like send people are probably the most invisible in society. Particularly people with pmld, outside of specialist environments, I’ve rarely witnessed people with pmld being respected as equal adults at all. In regards to the pandemic, it can be seen in the fact that the college I work at wasn’t even funded PPE in the first wave. The fact that there’s not much of a recognition of what life looks like now for people who might not be able to get the vaccine. Or the fact that throughout the pandemic, community centres/gyms weren’t seen as ‘essential’ to keep open for people with pmld, when I would say that they very much are.

• Why do you think this is?

I guess it’s because public awareness and even specialist knowledge is in a real infancy stage when it comes to send/pmld. When you consider that only 50 years ago people with pmld were still being so actively and cruelly hidden away from society, it’s not really surprising. We have a long way to go in terms of understanding how to communicate with and integrate people with pmld properly into society. I feel hopeful it will change, but it’s gunna take a lot of work!

• What do you think has been the most challenging part of caring for young people with SEN/PMLD during pandemic conditions?

I think the most challenging part has been trying to find ways to keep them connected and engaged with the world. It’s so easy for people with pmld’s world to become so small and controlled at the best of times, let alone when there’s a real threat with being out. During lockdown when a lot of my students were shielding I had to rely on technology to deliver them lessons to try and stop their world’s from becoming so insular, but that was so hard because a lot of them weren’t able to access technology on their own. They required support in that and you kind of just had to rely on the carer. You’re very limited in what you can do and for people who require very specific environments to engage with activities for any length of time, an iPad screen is a very small thing to achieve that through.

An important part of covering this topic via these short pieces is to ensure that the people who are the actual focus are not consigned to simply being spoken for. Obviously, not everyone with either Autism or other Learning Difficulties has the ability to speak for themselves, but in the online world it’s possible to gain a crucial glimpse as to the challenges affecting those individuals as they navigate the pandemic alongside everyone else.

@whitemonkeygod emphasised the difficulty of wanting to function alongside everyone else and ‘muck-in’ while having a condition that often made the working routine particularly difficult to handle.

@truthautistic related how the Sunflower Lanyard, a valuable mainstay among those with Autism and other hidden disabilities has had its usefulness dramatically reduced in the face of neurotypical people claiming it simply to be able to possess a ‘mask-free’ status in stores and public places.

@JennaMPink spoke of her concern when schools were due to shut again, as the substantial task of now providing her children’s education was hugely exacerbated by her conditions, leading to a loss in their academic attainment.

It may seem curious to the uninformed that Borat’s older brother, of all people, should be one of the premier voices on Autism research in the United Kingdom, and yet this is the role that Sir Simon has played for many years now. Sir Simon has sought to advocate for those young people with Autism and Learning Difficulties via his online profile and alongside his academic work, and as the UK’s lockdown draws to a tentative close it’s worth looking back on three issues he bought up during the pandemic:

• A direct appeal to former Health Secretary Matt Hancock over the already apparently overburdened NHS failing to provide timely assessment.

• A plea to the UK’s employers at a time of profound economic uncertainty over the dismal employment rates of people with Autism, liable only to get worse.

• Highlighting the rate a which people with learning disabilities are liable to die of COVID-19.

I feel I can assert without too much need for supplementary evidence that burgeoning internet addictions have been an ever-growing phenomenon in the last 18 months, as the world has rolled in and out of lockdowns and we found ourselves consigned ever more to our screens for distraction. One thing I’ve noticed is the explosion of certain YouTube channels, to the extent that they have almost functionally replaced the demand for the kind of Reality TV that has so afflicted the country in recent times.

A few years back, Harvey Price was a central figure on such Reality TV. As his mother, Katie Price, pushed out series after series of television detailing the strife and rigmarole of C-List celebrity life, young Harvey became a staple appearance. But it was only a few years later, after enduring endless jibes, perhaps most infamously from edgelord- now-turned-twitter-moraliser Frankie Boyle that his time in the public eye really became pronounced.

There was the Loose Women interview. And then, as is the case with many, many parents of young people with pronounced Autism and Learning Disabilities, Katie spoke of the struggle of trying to look after Harvey herself and the internal debate as to whether he should be in care. Harvey, was, and still is, the target of much ridicule online, the butt of many jokes, and a target entirely without recourse or right of reply.

And yet something curious has occurred recently, which encouragingly, appears to have pushed Harvey’s status from a mocked pincushion into something of a minor national treasure. Katie Price’s YouTube channel, though modelled in the same way as so many other influencers, has regularly featured herself and Harvey over the last year, capitalising rather cleverly on a burgeoning audience. They bake cakes, go to the dentist, hang out as a family, with some videos clocking over half a million views.

The comments reveal a sincere outpouring of support and positivity around the disabled young man. Viewers talk of how much they enjoy seeing Harvey complete every-day activities, and there is almost something of a forum culture in the way that other (non-famous) parents of disabled children share their own experiences.

“As a mum of severely autistic twins….Both mute and totally dependent on me… I see the love Kate gives Harv. He is such a wonderful happy man… as Katie is an amazing mother” – Zoe, England Supporter (YT Account Name)

While negativity is to the online world as water is to a goldfish, Katie’s channel has succeeded in highlighting and reinforcing a positive image of young people with profoundly limiting conditions, and has brought that image to the limelight during a particularly difficult time for everyone.