Written Evidence submitted by Embracing Complexity Lead at Embracing Complexity
The impact of COVID-19 on education and children’s services
About Embracing Complexity
Embracing Complexity is a coalition of 53 organisations working together to co-ordinate campaigning and research for people with neurodevelopmental conditions (NDCs). The coalition is led by Autistica, the UK’s autism research charity. Our first two reports, published in May and October 2019, are available at www.embracingcomplexity.org.uk. We estimate that around 1 in 10 people have a neurodevelopmental condition,[i],[ii] including but not limited to autism, learning disability, dyslexia, dyspraxia, ADHD, Tourette syndrome, and research shows that this group already experience significant health inequalities. People with NDCs already face significant barriers in education; whilst some have consequently thrived learning from home, others have been disadvantaged even further, and all are likely to experience particular challenges in returning to school.
Disruption to support for children with NDCs
The closure of schools and early years provisions means that there are fewer opportunities to identify difficulties in communication, engaging with academic work or interacting with peers. Some members, particularly those supporting people with NDCs such as dyslexia which are typically “caught” by the school system, are concerned that this will lead to delayed or missed diagnosis. Even where difficulties are identified, there are concerns that waiting lists for diagnosis and support, which can already take years, will be extended even further. In particular, closure of early years services may have a knock-on effect on children’s communication and language development; this, in turn, will affect their outcomes in education, mental health and employment. Recovery plans should ensure that early language and communication development, and timely identification and support of individual needs in this area, are prioritised and adequately funded.
Many of our members have experienced a surge in demand for their helplines since the pandemic took hold, with people with NDCs and their families unable to access their usual sources of support. One recurring theme is delays in creating, implementing and reviewing Education, Health and Care Plans (EHCPs). In some cases, this risks delaying the return to school for those who may benefit the most from a return to the structure and support that school provides. In other cases, parents who are now required to return to work may have little choice but to send their child to school without the appropriate support. For those who have difficulty understanding the social distancing guidelines, this could put themselves and other pupils and staff at risk.
In addition, our members report lack of clear pathways to referral and assessment following the closure of schools and Child Development Centres, and indefinite delays to paediatric and speech and language services as clinicians and therapists are redeployed elsewhere in the NHS as part of the effort against COVID-19. Where services are still being provided remotely, those without access to the Internet and other technology are left unable to access these services.
Across the country, parents have suddenly been expected to take charge of their children’s education with no training and often few resources. This is particularly difficult for children with NDCs and their families, for whom existing advice and resources may not be suitable. At the same time, specialist charities who could otherwise plug this gap have faced a significant drop in income; almost 4 in 10 organisations who responded to a survey of our members have had to furlough staff, while several feared having to close outright due to financial difficulties.
The loss of support from schools and other educational and children’s services has been compounded by loss of support from other carers due to social distancing restrictions and easements to the Care Act.[iii] In many cases, parents who may themselves be vulnerable are caring for their children alone, at a time when the stress and upheaval these children are experiencing may result in an increase in behaviour that challenges and other crises. Those with particularly high support needs may not be able to access home education at all, and their siblings’ education may also be severely affected.
Children with NDCs are already at greater risk of developing mental health difficulties,[iv] and this has been exacerbated by the disruption and isolation of the pandemic and resulting lockdown. Children and young people are facing the additional stressors of uncertainty over the phased re-opening of schools and what school will be like on their return, sudden cancellation of the exams they have been working hard towards and, for some, loss of the usual traditions that provide closure as they leave. In some NDCs, this anxiety and stress can exacerbate symptoms such as seizures.
For some children, including children identified as vulnerable as well as the children of critical workers, schools have remained open throughout. It is concerning that only 5% of vulnerable children entitled to attend school are currently attending;[v] with the right support, our sector has a role to play in exploring the reasons behind this. The Coronavirus Act provides for a relaxation of the Children and Families Act duty to secure provision for children with special educational needs,[vi] which came into force in May[vii] and will last until at least the end of June,[viii] again removing support from children with NDCs just as they need it most.
Re-opening of education and children’s services
On the other hand, some children with NDCs and their families have found that the lockdown has improved certain aspects of life. Many children with NDCs experience acute anxiety in school settings, and the move to home learning has led to improvements in their mental health and behaviour. Some, particularly those who fit the PDA profile, were refusing to attend school and/or were being taught at home prior to the COVID-19 pandemic; their families have reported reduced pressure and judgement since this became universal. Meanwhile, the cancellation of exams has been a welcome relief for people with NDCs such as dyslexia, who may be disadvantaged by the current exam system and for whom predicted grades may provide a more accurate reflection of their academic abilities. As schools in England begin to re-open, it is important to learn from these experiences and ensure these children can continue to reach their full potential. The return to school will be a particularly difficult time for many children with NDCs, be it through difficulties in a school setting that had eased in lockdown, the disruption to the lockdown routine they may now be used to or the changes to the previous school environment in light of social distancing guidelines.
Furthermore, not all children will be able to return to school at the same pace as their peers; as more people begin to resume their normal activities, there is a risk that this group will be left more isolated than ever. People with some NDCs, such as Rett syndrome, are considered extremely clinically vulnerable to COVID-19 and are not yet able to return to school. Some of our members have expressed concerns about the willingness of school staff to provide first aid in the event of a seizure or similar event which would necessitate close contact with the child; at present, there is little guidance for managing health conditions in returning children while ensuring the safety of pupils and staff. In addition, we still know very little about the risk of COVID-19 infection, and the related multisystem inflammatory syndrome reported in some children, for children with certain NDCs and other conditions; with people with some NDCs known to be more vulnerable to respiratory infections more generally,[ix] it is likely that some families will decide that returning to school is not yet safe for their child. Even for those who are not physically at a higher risk, the delays to implementing EHCPs may in turn delay their return to school. It is crucial to ensure that children with NDCs who cannot yet return to school are adequately supported to continue learning at home.
[i] Estimate based on Department for Education figures on pupils with special educational needs, January 2019. <bit.ly/2RFIIKf>
[ii] Gillberg C (2010) The ESSENCE in child psychiatry: Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations. Research in Developmental Disabilities 31(6), 1543-1551. <bit.ly/3esiV26>
[iii] Care Act easements: guidance for local authorities. Department of Health and Social Care, 1 April 2020. <bit.ly/3evHz1G>
[iv] Simonoff E, et al. (2008) Psychiatric Disorders in Children with Autism Spectrum Disorders: Prevalence, Comorbidity, and Associated Factors in a Population-Derived Sample. J Am Acad Child Adolesc Psychiatry 47(8), 921-929. <bit.ly/2VyZs7a>
[v] BBC News: Tiny fraction of ‘at risk’ children attending schools. 22 April 2020. <bbc.in/3bDJPSO>
[vi] Coronavirus Act 2020, Schedule 17 Part 1, Section 5(6). <bit.ly/2VzyYSR>
[vii] Coronavirus Act 2020 Modification of section 42 of the Children and Families Act 2014 (England) Notice 2020. 28 April 2020. <bit.ly/2ZPpWVt>
[viii] Coronavirus Act 2020 Modification of section 42 of the Children and Families Act 2014 (England) (No. 2) Notice 2020. 28 May 2020. <bit.ly/2BgInZ2>
[ix] The Learning Disability Mortality Review (LeDeR) Programme Annual Report 2018. University of Bristol. <bit.ly/2RER6JP>