“Our children are the forgotten children”: lived experiences of COVID-19 asymptomatic testing in young people with special educational needs and disabilities and those who care for them

Abstract Background The impact of the COVID-19 pandemic was felt disproportionately by people with Special Educational Needs and Disabilities (SEND), with a substantially higher mortality rate compared with the general population. Regular testing was an important part of the public health response to reduce infections, however many people with SEND were unable to access COVID-19 testing. Our aim was to understand SEND experiences of and barriers to COVID-19 testing. Method We conducted focus groups with young people with SEND and those who care for them to explore their experiences of COVID-19 testing. Thematic analysis was used to identify challenges encountered and how they were navigated. Results Participants reported a systemic misunderstanding of SEND needs underpinned experiences of disempowerment, being overlooked, and feeling that needs had been unmet during the pandemic. This sits in contrast with the considerable expertise that parents and families exhibit in understanding the needs of their children with SEND. Participants expressed feeling their opportunity to engage in testing was restricted through a misunderstanding of how their physical and communication needs may differ from the wider population. Conclusions Our findings highlight how a misunderstanding of SEND needs and negative impacts of attempts to engage in testing despite considerable barriers, left SEND communities feeling forgotten during the pandemic. We propose the following recommendations: harnessing these insights in future public health response measures, using robust behavioural and social science approaches; acknowledgment of participant expertise of experience through co-produced public health guidance, crucially reflecting the diversity of SEND; development of more inclusive guidance to testing practice which supports equitable access for those with SEND and guides face-to-face practitioners in providing this support.