Our researchers have released interim findings for Wales, from a wider UK study of adults with learning disabilities and their experiences during the Coronavirus pandemic.

This multi-centre UK study, made possible through funding from UK Research and Innovation, aims to understand the experience of adults with learning disabilities over 12 months of the pandemic.

The Welsh arm of the study is led by Professor Stuart Todd and Dr Edward Oloidi, along with Dr Steve Beyer (Cardiff University). Their research team conducted online interviews with 149 adults with learning disabilities and collected survey data from 77 family carers or paid supporters of people with severe or profound multiple learning disabilities in Wales. 

The study has three phases where the same participants will be contacted to provide information on three separate occasions. This is being mirrored by other project members in England, Scotland, and Northern Ireland.

Interim findings (available here) demonstrate the unique difficulties experienced by adults with learning disabilities. Participants reported that their level of support and access to services had significantly reduced in the last year. This is a group of people who have a unique and high level of health needs, but healthcare appointments have been cancelled.  The impact of lockdown and anxieties about coronavirus had a negative impact on their wellbeing.

Dr Oloidi said: “We have just finished our second wave of data collection. We will soon start phase 3 of the study but felt it was important to disclose an interim report because we are still in the middle of an emergency situation that is constantly evolving. It is vital to keep policy makers abreast of the findings.

“What stood out most for me is the level of campaigning that was required to make adults with learning disabilities a priority for vaccinations. People with learning disabilities must be given more thought in the future.”

The Wales-based project involves a collaboration with Cardiff University, All Wales People First, Learning Disability Wales and All Wales Forum. A final study will be available in the late summer/early autumn and will include recommendations for policymakers on how to respond to any unforeseen situation, regarding adults with learning disabilities.

Professor Todd said: “This is such an important study for many reasons. People with learning disabilities have been a group at high risk of infection and from death from COVID19. Many of the health and social care support systems to people with learning disabilities have diminished considerably. Their situation must be made more visible. This study hopefully will help. 

“It has been a success because of the collaboration between universities and third sector organisations in Wales. We would like to build upon that too to keep that important dialogue open beyond the study. There is an important lesson there too.”

Joe Powell, Chief Executive, All Wales People First, said: “It was wonderful to work with the University of South Wales on this critical piece of work, during a time of great vulnerability for people with learning disabilities in Wales.

“It is important to remember that the Covid 19 pandemic did not cause the social inequalities for people with learning disabilities but exacerbated injustice that was already there. When society becomes sick, it is inevitable that the lives of the most vulnerable in society are disproportionately impacted on. The findings of this report are critical to evidencing this.

“It is imperative that we act on this if people with learning disabilities are to be included as equal citizens in Wales as promoted in key Welsh Government legislation such as the Wellbeing of Future Generations (Wales) Act and the Social Services and Wellbeing (Wales) Act. I commend all those who worked on this report for their extensive engagement with people with learning disabilities and for valuing us as equals throughout the process."