A new report from University College London has just been published, examining the effects of Covid lockdowns on young children with Trisomy 21. Children with Down Syndrome in Lockdown: Key findings from a survey of parents of children under 11 with Down Syndrome in the UK
It’s clear that deeply challenging consequences were set in motion by the pandemic lockdowns, and this negative course has not yet been corrected. This report comes at a key time while the draft statutory guidance for the Down Syndrome Act is still currently under consultation. Meeting the need for integrated provision of services is an aim directly addressed by the Down Syndrome Act: this report is a perfect example of why this matters, and a particularly acute instance of ways that children with Down syndrome are affected when services are fragmented or suspended.
Report Findings: interconnected impacts on wellbeing
The report presents findings from a UK survey of 241 parents of children aged 0–11 with
Down syndrome, examining the impact of COVID-19 lockdowns on education, health, development, and family life. Families reported widespread disruption, with interconnected effects across multiple areas of children’s wellbeing.
Education was heavily affected. Although most children attended school pre-pandemic, 91% stopped in-person attendance during the first lockdown, and fewer than half attended during the second. Remote learning was often ineffective: many children struggled to engage online, only about half received remote provision, and parents frequently had to manage learning themselves. Most parents believed their children missed key learning activities and worried about long-term academic regression. Extracurricular activities also largely stopped.
Social and communication development declined for many children. Nearly 60% of parents reported deterioration in social skills, and over half noted changes in communication ability, often attributed to reduced social contact and limited therapy support. Some children became more anxious or cautious around others.
Mental health and behaviour showed notable deterioration. About two-thirds of parents reported negative emotional impacts, with increases in unhappiness, anxiety, tantrums, defiance, and aggression. Isolation, disrupted routines, and fear related to COVID-19 were key contributors.
Daily life impacts were mixed but meaningful. Sleep patterns were mostly stable, but over half of children experienced reduced physical activity. Diet changes were variable, with some increases in sugary and processed foods. Many families faced financial strain, employment changes, and increased caregiving pressures.
Health services and support access were significantly disrupted. Around 90% experienced cancelled or delayed medical appointments, and many therapy services stopped or moved online. Parents feared these gaps contributed to stagnation or regression in development.
The report concludes that children with Down syndrome experienced substantial, interconnected harms during lockdowns. It calls for integrated, family-centred support, targeted educational catch-up, improved access to services, and further research into long-term impacts.
Recommendations included these observations: “… investing in early intervention and preventative initiatives can prevent future health and wellbeing challenges across the life course. Making sure that support is sufficiently available across health, education and development could not only improve quality of life of people with DS in the short term, but could have lifelong individual, societal and economic benefits, including the reduction in future demand for health and support services. As part of the government’s reassessment of how their policies can be more disability-inclusive, we suggest that working with families to develop and invest in tailored, evidence-based and sustainable solutions that acknowledge the impacts of the pandemic could help to mitigate any damage caused by the lack of support families experienced.”
The report’s findings will be of great importance in finding the best way forward for some of the young people who still remain worst affected by the pandemic. We also hope that its findings will shed light on why we have campaigned so hard for the Down Syndrome Act 2022 and for effective guidance. We hope to see a fractured system being looked at more holistically, for the sake of the DS community who are often harmed in a lasting way by the omissions and gaps they encounter. With thanks to the team at UCL for their insightful attention to the impact of the lockdowns on young children in the DS community.