How is the coronavirus lockdown affecting the mental health of children with SEND?

With so many children with SEND finding school an anxiety-inducing experience, has home learning during the coronavirus lockdown helped, or exacerbated the state of their mental health?

Families will also be facing the question of how to prepare their child for reintegration. At the end of this article, you can submit your mental health questions about lockdown life and concerns about reintegration, to our resident child and adolescent mental health counsellor, Angela Kelly. I’ll be recording a video chat with Angela soon to get her ideas and tips, so if you have a question, submit it at the end so we an include it.

Lockdown SEND mental health research project

Researchers from the University of York are conducting an ongoing project about the mental health of children with SEND and their families. They've published two brief reports¹. They asked a range of families of children with SEND about their current mental health. As the researchers observe:

“Staying at home, and in most cases not attending school, creates a uniquely stressful situation for children with SEND and their families. Carefully developed routines have been disrupted; support networks have disintegrated; and parents have been asked to do a job that trained teachers find challenging, without any training. These changes have happened abruptly and the consequences could be particularly profound in the SEND community. It is therefore important to ask how COVID-19 is affecting the mental health of these families, with a view to gaining insight into how schools and society can support them over the coming months.”

How is COVID-19 affecting the mental health of children with Special Educational Needs and Disabilities and their families? Kathryn Asbury
Laura Fox, Emre Deniz, Aimee Code, Umar Toseeb

241 parents or carers of children with SEND aged between 5-18 have participated in the survey for this report. Of the children, 71% were boys; 44% were in mainstream schools and 70% had an EHCP. School places had been made available for 73% of the sample but only 8% had taken up their place.

It’s important to note that participants were recruited between 22^nd March and 1^st April, during the first fortnight after school closures. Now, a month on, their experiences may have changed and the study is ongoing. If you’d like to participate, see the note from the author in the coloured box below.

The study divided responses into six categories:

1. Worries (self, others, general); were described by the authors as “substantial and serious”. The include availability of specific food because of restricted food preferences, children falling even further behind in school because they did not know how to meet their needs, and worries about who would look after them if they (the parent) died as a result of COVID-19.   
2. Loss was also described by many participants as a result of COVID-19, and these losses were organised into four sub-categories: loss of routine, loss of support network and structures, loss of specialist input and, for a minority, financial loss.  While many families in general will experience similar feelings, for some children with SENDs it is not possible to explain why these losses have occurred, creating further difficulties.  We have several examples in the data of lone parents who are isolated with a child who displays very challenging behaviour without access to any of the support and respite that usually helps them to fulfil their parental role effectively.
3. Moods, emotions and behaviour, were mentioned by many participants.  While low mood and distress are likely to be widespread the data suggests they may be experienced more severely within the SEND community.  The types of challenging behaviour include involving police, violence to self and others, and destructiveness.
4. Knowing what is going on was a key element of some participants’ responses.  Parents described situations in which a child’s low level of understanding led to distress because they could not understand why everything had changed.  This is sometimes expressed in some minimally verbal children by a deterioration in behaviour.  
5. Feeling Overwhelmed: A substantial minority of parents described themselves as being stressed by the feeling they need to meet needs 24/7 without support, a break or respite, often alongside working and meeting the needs of others in the family.  
6. Minimal or positive impact was described by a substantial minority of families whose child has a hard time at school and feels safest at home.  For these children, self-isolation and social distancing may lead to a period of calm respite, creating a more relaxed environment for them and their families.  

The authors suggest that families of children and young people with SEND are likely to be at a greater risk of experiencing poor mental health, and to be under substantially greater pressure, than families in general during the current crisis. This is, of course, no surprise to us, but a useful exercise in looking at where more support is needed.

What support would be helpful?

In another part of the project², the families were asked what support they would like during the coronavirus crisis. Looking at the answers, and also at the anecdotes from parents on our own Facebook page, it's clear that some of these needs could be met fairly easily without much cost. It's clear that many practitioners are doing amazing work in very hard circumstances. However, if they're not already doing it, thinking about the child's individual needs, rather than a class as a whole, would be hugely beneficial.

Type of Support parents highlighted:

1. Specialist professional advice from SENCOs and others to reassurance, provide specific advice about the child's needs, or to help implement a new routine. E.g. “to be able to touch base with help from [specialist professionals]”.
2. Specific advice or support relating to their child’s mental health and wellbeing e.g. “advice to stop existing mental health issues from getting worse during [the] crisis” and “help with anxiety and ways to cope with melt down in this situation”.
3. Appropriate educational activities set by school differentiated to meet the child’s ability, rather than general tasks that are beyond the child’s level.
4. Seeing familiar teachers’ faces from school remotely as a point of pastoral care or just to read a story and say good morning.
5. To be given priority for online shopping as it’s impractical to take their child or because their child only eats specific foods that are not available. E.g. “forced to take disabled child out to places that are their meltdown trigger to get basic food”. This is something that SNJ has seen repeatedly - families being missed off lists for priority services because it's the child who is disabled (or who has the "wrong" disability) without thinking about the implications for parents getting to the shops.
6. Access to social stories or similar to explain the situation to their child who may not be able to communicate typically.³
7. Respite care for child. Many families have lost their usual support as well as the break that school gives and so have no break from caring responsibilities
8. Regular structured activity outside the home. For example, for weekend clubs to open on a limited basis.
9. Materials or ideas for home learning. For example, provision of physical equipment, smartphone apps to help with their child’s additional needs, sensory objects or arts and crafts materials.
10. Access to safe outdoor space. Explaining social distancing is sometimes impossible⁴

The research team are interested in how children with special educational needs and their parents are feeling and how they would like to be supported. The study is ongoing and so you are invited to take part in a 10-15 minute survey. You can take part by clicking here If you have any questions about the study, please contact the study team directly.

Has children’s anxiety got better or worse?

Before I saw this study, I had already asked people on our Facebook page what changes they had noticed in their children since lockdown. As you would imagine, it very much depends on the child's SEND. However, many observed how their child’s anxiety has decreased being out of the school environment, with one practitioner noting, “I work with 180 families of children with SEND and it's alarming how many have told me that their child is fine now they are not at school.”

Here are a few of the comments:

Some questions need to be asked with so many children, especially those who already experience anxiety, feeling much less stressed while home learning (the level of learning going on is undetermined). How can schools make their environments easier for these children to thrive? Some schools do a brilliant job at this and are friendly and welcoming places for all. These schools should be encouraged to share their expertise so it can be made into learning modules for trainee and existing teachers. If there is one thing this crisis has shown us, it's that there IS money available, it's just having the will to spend it where it's needed that has been missing.

Spending a relatively modest amount now to give teachers the right skills to create low-anxiety environments in schools, will be hugely beneficial in the long-term. Teaching children how to manage anxiety leads to confident, resilient adults. And that is a virtuous circle, leading to a better society for all of us. Ultimately, it will cost less in lost productivity and - crucially - lost lives.

Notes

1. How is COVID-19 affecting the mental health of children with Special Educational Needs and Disabilities and their families? Kathryn Asbury, Laura Fox, Emre Deniz, Aimee Code, Umar Toseeb
2. Supporting Families with Children with Special Educational Needs and Disabilities During COVID-19. Umar Toseeb, Kathryn Asbury, Aimee Code, Laura Fox, Emre Deniz
3. Find social stories in our Distance Learning for Children with SEND page
4. Note the changes made to regulations for being outside for people with learning disabilities and autism. Find them on our Coronavirus Information relevant for families of children with SEND page

Also read

• All our coronavirus coverage
• Ofsted finds home education is most often not a choice – and off-rolling is a key culprit
• Know your child’s rights to social care support
• Help! I’m a parent carer and I’m on my VERY last nerve!
• Campaign: Family carers deserve at least minimum wage for their 24/7 work
• How has special education needs evolved in the 40 years since the Warnock Report?
• Strategies to support expressive language
• SNJ's SEND System Flow Charts
• SNJ's Get started with SEND checklist

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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