Pandemic exacerbated disadvantages faced by young people with special needs and disabilities

The pandemic has exacerbated existing disadvantages faced by young people with special educational needs and disabilities (SEND), according to research.

Many suffered isolation and experiences disruption or the withdrawal of education, health services and social and mental health support.

The Ask, Listen, Act project was run by Liverpool John Moores University, Edge Hill University and the University of Liverpool.

Researchers found that existing inequalities and limitations in the provision of services for children with SEND, were exacerbated from the point of the first lockdown in 2020 with education, mental health, and social care downgraded or, in some cases, withdrawn altogether.

Their findings included:

• Lockdown compounded existing special education needs and disabilities, for example children with Attention Deficit Hyperactivity Disorder (ADHD) were unable to do the activities that allowed them to expend their energy, and children with Autism Spectrum Disorder (ASD) struggled with the sudden change in routine and lack of ability to socialise.
• Parents/carers said a pre-existing lack of support for their children with SEND was exacerbated during the pandemic. Health care, health appointments, and therapies were cancelled, delayed, or moved online.
• School places for children with SEND were reported as not being available during the first lockdown and there was a lack of support and communication from school during periods of online learning.
• Remote learning for children with SEND was extremely challenging, if not impossible, as it was inaccessible, and schoolwork was not always differentiated for their child’s needs.
• Professionals said children with SEND were not taken into consideration during the pandemic. Those interviewed said services were prevented from operating and that guidelines were unclear, inconsistent, and rapidly changing.

• During the pandemic, professionals encountered more families of children with SEND in crisis and had concerns over safeguarding due to not being able to see children in person.

The online survey was completed by 55 children with SEND, 893 parent/carers, 163 health and social care professionals, 100 education, professionals and 44 local authority professionals.

"I just think that maybe there should have been exceptions to the rule from day one, being allowed to go out and access your support"

What they said:

• "I could not use zoom like other children. I cannot see, and the sound is not enough. I could not follow the conversation. I really need to touch people to know what they are paying attention to” - a child with SEND.
• "It was frustrating because everything stopped, I mean literally everything. We've not seen as many professionals … It took away any kind of support that there was” – a parent of a six-year-old boy who is deaf and has a developmental delay.
• "He went through a stage he had night terrors every night… It was very difficult, and [he] had some very dark times with his violent behaviour and anxiety that that was mostly aimed at me when I got home… I suppose he couldn't vent his stress anywhere else because we were at home all the time” - a mum, whose son has autism, ADHD and anxiety.
•  “It was frustrating, really frustrating. I didn't feel like SEND or disability was taken into consideration. It was one rule for everybody… I just think that maybe there should have been exceptions to the rule from day one, being allowed to go out and access your support” - a service manager for a charity.

Dr Emma Ashworth, lecturer in psychology at Liverpool John Moores University, said: “Children and young people with SEND have had a particularly difficult experience during the pandemic – the changing rules and restrictions have had a huge impact on their mental health and wellbeing, education, social and emotional development, and access to healthcare services. There is much work to be done to better support them and their families during the pandemic.”

Dr Joanna Kirkby, Liverpool John Moores University, research assistant at LJMU, said: “We have seen how harmful, and even devastating, the pandemic has been for some children. At times, they  received no support of any kind. I hope action can be taken quickly to increase support and improve provision for children and young people with SEND.”

Prof Lucy Bray, Edge Hill University, said that it would take many years, renewed investment and a new co-ordinated approach to services to make sure that their basic rights are met.

Imperative their voices are heard

Prof Amel Alghrani, University of Liverpool, said: “This is an important study which examines exactly what impact legislative changes made in response to the COVID had on one of the most vulnerable cohorts in society: children and young people with SEND and their families. It is imperative that their voices are now heard, their legal rights respected, and action taken.”

The study was supported through Liverpool Health Partners, a partnership of Universities and NHS organisations across Cheshire & Merseyside. The role of LHP is to unify clinical and academic expertise to improve population health outcomes and economic productivity. For more information contact Carianne.Hunt@lhch.nhs.uk

This study was funded by the National Institute for Health Research's (NIHR) Policy Research Programme (Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 funding stream) in May 2021.