Many disabled children and young people have complex physical and mental health needs, and receive specialist health, social care, and education services. This research aimed to find out how disabled children’s services changed during the COVID-19 pandemic, how changes affected children’s health and wellbeing, and how we can prepare for future emergencies. Disabled young people and parent carers worked with us in the study.

We brought together the published research on the impacts of changes to services to disabled children worldwide during the pandemic. We interviewed disabled young people, parent carers, and health, education and social care professionals; in five very different areas of England to find out how local services changed during the pandemic and how children’s health and wellbeing was affected. In four of the areas, we examined the number of children’s contacts with health services before and during the pandemic.

The published research, interviews, and information on children’s contacts with services during the pandemic showed similar patterns. In England, and internationally, elective surgery paused, short breaks stopped, and many disabled children did not attend school. Health appointments moved to telephone or videocalls instead of in person. This worked well for some medical appointments, but not for therapy services, because therapists had difficulties seeing, hearing and engaging with children via video. Contacts with all health services reduced; contacts with therapy services reduced the most. The physical and mental health of many disabled children deteriorated. Parent carers and professionals thought this was because of loss of support and service disruption during the pandemic.

The findings informed recommendations on how to help children stay healthy and support families in future emergencies. Families and professionals agreed on 19 recommendations covering how decisions on service changes are made, how services are delivered, and how changes are communicated to families.