The Unit for Development in Intellectual and Developmental Disabilities (UDIDD) at the University of South Wales has been involved in leading the Welsh arm of a major UK study about the experiences of people with learning disabilities through the Covid-19 pandemic. It was funded by UK Research and Innovation and led by Prof Chris Hatton (Manchester Metropolitan University) and Prof Richard Hastings (University of Warwick).
Prof Stuart Todd and Dr Edward Oloidi led the study in Wales along with Dr. Stephen Beyer from Cardiff University. They were joined in this work by major Welsh organisations, Learning Disability Wales, the All Wales forum of Parents and Carers, and All Wales People First.
We now know that people with learning disabilities have had a higher risk of dying from Covid-19 than people without learning disabilities. There are important lessons there for the future. What this study adds to the evidence concerning the pandemic is what living through the pandemic was like for people with learning disabilities?
Although there have been many studies taking place in the UK concerning the impact Covid-19 has had on people’s lives, these tended not to include people with learning disabilities. Many people with learning disabilities would find it too difficult to participate in these studies given the way they were organised. In this study, we spoke to over 150 people with learning disabilities in Wales. We spoke with them at three different time periods during the pandemic. We also invited family carers and paid support staff to take part in an online survey so that we are able to capture the experiences of individuals that couldn't take part in the interviews. About 50 people did this on three occasions. We think it is import here to say thank you to all those who took part in our study. The response we had from people was tremendous. We would also like to thank the members of our team that spent so much time, and with great commitment and patience, supporting people to take part in our study. THANK YOU ALL!
People told us that they had taken part and supported the civic response to the pandemic in Wales. They did so not just for their own safety but also, and just as importantly, for the safety of others. The impact this had on them was largely negative in terms of access to health and social support and in terms of their well being. There were though some positive dimensions. People found that access to and use of digital platforms mitigated some of the worse effects of isolation. Some people said that they knew their neighbours better than ever before. People though were anxious about their present and future health, were not certain about what it all meant for their futures and that largely they felt they had not been very involved in decisions that impacted upon them. Although some people felt that the worst of the pandemic is behind us for now, many people with learning disabilities still felt they were living through it. People were pessimistic about the future. The family and paid carers that took part in our study also felt further marginalised than before and the costs they had paid for their part would be felt for some time to come.
You can also read the easy read briefings on findings from the study here:
Read the easy read briefing on Risk here
Read the easy read briefing on Vaccinations here
Read the easy read briefing on Digital lives here
Read the easy read briefing on Access to health and social care services here
Read the easy read briefing on Impact on caring, family and paid support staff (Wave 2) here
Read the easy read briefing on Restrictions here
Read the easy read briefing on Impacts on physical and mental health here
Read the easy read briefing on Access to support and services here
Read the easy read briefing on Impact on caring, family carers and paid supports staff (Wave 3) hereRead the easy read briefing on Support when someone dies here