Study title

People with learning disabilities are more likely to experience health issues associated with a severe reaction to COVID-19 and higher death rates, with some groups of people needing 24-hour support and others with limited social care support, all of which may be challenging during the COVID-19 pandemic. This research project covered the whole of the UK and asked adults with learning disabilities and their family carers and paid support staff how the COVID-19 pandemic impacted their lives and wellbeing using direct interviews, conducted three times, during the 12 month project with a core question set of well-validated questions.Data was collected directly from 621 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 378 adults with learning disabilities.

There are about 1.5 million people with learning disabilities across the UK. Even before the COVID-19 pandemic, people with learning disabilities were more likely to experience poorer health and wellbeing, restricted social lives and loneliness and poverty. The social restrictions and changes in support during the COVID-19 pandemic may have made this worse. In this project we asked over 600 people with mild/moderate learning disabilities, and the carers of over 300 people with severe/profound learning disabilities, about their wellbeing, health, living circumstances, the support they are getting, and the impact of COVID-19 on their lives. We collected information from people three times over the 12-month project to track changes over time and what is linked to better experiences for people. We also asked extra questions about urgent issues that came up during the course of the project. These were decided by working with collaborating organisations of people with learning disabilities and family carers, policy-makers and other organisations across the UK.