Many children with special educational needs and disabilities depend on carefully established routines and relationships for their learning, development and wellbeing.  When households were asked to stay at home, and to observe social distancing and self-isolate where necessary, these routines and networks were abruptly broken down. This has generated a uniquely challenging situation.

Some children with SEND have underlying health conditions that make them vulnerable to infection, and some experience mental health problems even in normal circumstances. This combination of elevated individual risk and rapid social change is likely to have a disproportionately negative impact on mental health. 

Our group at the University of York has been collecting data from UK families since the first day of the UK-wide lockdown, allowing us to document the impact of Covid-19 on SEND families.

Coronavirus: The impact on children with SEND

We have data from over 400 parents or carers of a child with SEND (40 per cent in mainstream schools and 60 per cent in alternative provision). As “vulnerable” children, many were entitled to a school place but only 10 per cent of the sample took their place up. In many families, the risk of sending their child to school was deemed simply too great.

We asked these parents/carers to describe how Covid-19 has affected their own mental health and that of their child and their answers fell into six key areas:

Worry

“My son’s anxiety is sky high, his hands and arms are red raw from constant washing,” one parent told us.  

“[He] curls up repeating, ‘I’m scared, I’m just scared’,” reported another.

As well as describing extreme anxiety symptoms in their children, some parents told us they were concerned they were letting their child down.

“I worry I’m not doing home education correctly, and that my son will fall even further behind at school due to my failings,” said one parent. 

Our data suggests that, while families of all types are likely to be anxious in the current situation, these worries may be amplified in SEND families.

Loss

Families also described a great sense of loss as their access to support networks and carefully curated routines was suddenly taken away. 

“[My child] will not attempt school work at home as home is home and school is school, and they do not mix,” explained one parent, while others expressed concerns that their children had been left behind as schools moved their provision online.  

“Home-schooling is difficult as the work sent from school isn’t appropriate (his sister is four years younger and they sent home exactly the same work, which is no good for his self-esteem),” wrote one parent.  

Although getting educational provision for the majority of pupils online in a very short amount of time has taken a Herculean effort, it now seems important to turn attention to those children who can’t access the same work as their peers quickly, and to create opportunities for them to interact remotely with the familiar faces of their teachers and teaching assistants. 

Mood, emotions and behaviour 

Parents described children who were severely distressed, who had begun to exhibit psychotic symptoms and who had begun to behave in challenging ways in reaction to the losses they were experiencing.  

“My daughter has started stimming [self-stimulating behaviour, such as the repetition of physical movements, sounds or words] constantly, has constant violent outbursts (which she doesn’t have often usually) and has started having night terrors,” said one parent. 

A mother told us that she feels like she is “drowning and nobody can see me”.

While low mood and distress are likely to be widespread, our data suggests that, as with anxiety, these feelings may be experienced more severely in the SEND community. The level of distress reported, in some cases by lone parents with no access to a break of any kind, suggests that support is urgently needed before the most vulnerable families reach crisis point.

Knowing what is going on 

Many of the children in our sample have limited understanding and awareness and, while this protects some from worry, it leads to confusion and distress in others.  

“My daughter doesn’t understand why she can’t see her family and that’s made her feel quite sad and lonely, sometimes thinking it’s a punishment for something she might have done,” said one parent.  

In other cases, good understanding, and good communication from specialists in school, was seen as a protective factor for children. It might be that understanding and awareness could be enhanced via social stories or other tailored means.

Overwhelmed

Some parents and carers reported that, even in the first two weeks of lockdown, meeting all of their child’s health and educational needs without support or a break - while also meeting the needs of others in their family - was overwhelming. As one parent put it:  “I have felt completely unprepared for the reality of dealing with [my daughter] 24/7 without any support or respite as her behaviour is extremely challenging and she can become physical.”  

Again, we see signs that some families in this group are particularly vulnerable and in urgent need of support. This needs to be treated as a priority by health and social care professionals.

Minimal or positive impact 

The most positive element of our data was that some families felt their mental health had been unaffected by Covid-19 and that there was also a minority who described real benefits.  

For children who are unhappy at school and stressed by many of the demands of daily life, being able to stay safely at home with loved ones seems to be actively beneficial.  

“His anxiety is much less than normal as he no longer has the daily torture of going to school,” one participant reported of his son.  

While these children also need to have their learning needs met in an appropriate way, it is noteworthy that lockdown may be acting as a positive, albeit temporary, intervention for their mental health and wellbeing.

Supporting parents

Our study gave us an opportunity to ask what specific help families need in the short-term and parents suggested the following:

• Specialist, child-specific advice from teaching staff, Sendcos and child and adolescent mental health professionals on how to support their children’s learning and wellbeing at home.
• Appropriate educational activities set by school, tailored to the child’s needs.
• Access to “familiar faces” online to allow children to see the link between learning at home and learning at school.
• Social stories to enhance understanding of the lockdown.

These requests seem justified by the often extreme effects of lockdown on some of these children and families.  

There has been a recent call from the children’s commissioner to get “vulnerable” children back to school. Our data suggests that, although this may be appropriate for some vulnerable groups, it is not what most SEND families want or need.  

Instead, most participants in our study want to be supported to access education from home, like their neurotypical peers. This may involve providing increased resources to enable schools, child development centres and social care and charitable organisations to support some SEND families in their homes. 

While there is no doubt that schools are under a great deal of pressure, and that many have done an utterly extraordinary job of transforming their way of working, there may be a need to do more for the most vulnerable SEND families. The ideas represented above, suggested by parents themselves, may be a good starting point.

Umar Toseeb is a lecturer and Kathryn Asbury is a senior lecturer in the department of education at the University of York. 

Follow the authors on Twitter at @UToseeb and @KathrynAsbury1 for updates on the project

For further information on the evidence that this article is based on please see:

Asbury, K, Fox, L, Deniz, E, Code, A, and Toseeb, U (2020). How is Covid-19 affecting the mental health of children with special educational needs and disabilities and their families?

Toseeb, U, Asbury, K, Code, A, Fox, L, and Deniz, E (2020). Supporting families with children with special educational needs and disabilities during Covid-19