Research: COVID-19 and people with learning disabilities
Taking lessons from the pandemic to improve services and support for adults with learning disabilities and their carers.
Summary
Research summary
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September 2020 – February 2022
The project aimed to understand how the COVID-19 pandemic affected adults with learning disabilities and their carers across the UK.
Before the pandemic, people with learning disabilities were already more likely to experience poor health and wellbeing, loneliness and poverty.
COVID-19’s impact on services for people with learning disabilities has made this worse.
Objectives
We wanted to find out whether social restrictions and changes in support worsened existing health, wellbeing and financial inequalities.
We also aimed to discover whether people with learning disabilities faced any urgent new challenges, and what can be done to improve their experiences.
Methodology
We:
- interviewed around 700 people with mild-to-moderate learning disabilities
- surveyed around 500 carers or support staff of people with severe learning disabilities who could not take part themselves
We contacted each person three times between December 2020 and August 2021 to see if their experiences changed over time.
Outcomes and outputs
The research suggested that participants across England, Scotland, Wales and Northern Ireland shared similar experiences.
The last wave of interviews and surveys in Summer 2021 indicated that support services were not back to pre-pandemic levels.
Key findings for England
- Fewer people have paid or volunteering jobs than before the pandemic.
- Around half of people said they were lonely at least some of the time at every interview.
- A significant proportion of family members said that caring meant they felt tired and stressed.
- There was a fall in the number of people going to day services or taking part in community activities.
- Less than half of people who should have an annual health check had had one by summer 2021.
- People with learning disabilities and their carers did not always find it easy to get information on how COVID-19 affects them.
- By summer 2021, most people with mild-to-moderate learning disabilities still enjoyed online activities.
We have made recommendations to inform policymakers and those commissioning services, including:
- ensuring that service provision exceeds, not just matches, pre-pandemic levels
- making more peer and emotional support available to family carers
- encouraging commissioners and providers to review services to ensure they are not outdated and reflect what people want
- making it easier to book GP appointments as well as ensuring important information is available in a range of easy-to-understand formats
Research outputs
- Flynn, S, Hatton, C, Hastings, RP, Hayden, N, Caton, S, Heslop, P, Jahod, A, Todd, S, Oloidi E, Beyer, S, Mulhall, P and Taggart, L (early view) Access to and use of health and social care services for People with learning disabilities during COVID-19: a longitudinal study Tizard Learning Disability Review
- Hatton, C, Bailey, T, Bradshaw, J, Caton, S, Flynn, S, Gillooly, A, Jahoda, A, Maguire, R, Marriott, A, Mulhall, P, Oloidi, E, Taggart, L, Todd, S, Abbott, D, Beyer, S, Gore, N, Heslo,p P, Scior, K and Hastings, RP (2021) The willingness of UK adults with intellectual disabilities to take COVID-19 vaccines Journal of Intellectual Disability Research, 65(11), pp 949-961
- Flynn, S, Caton, S, Gillooly, A, Bradshaw, J, Hastings, R, Hatton, C, Jahoda, A, Mulhall, P, Todd, S, Beyer, S, Taggart, L and The Coronavirus and People With Learning Disability Study Team (2021) The experiences of adults with learning disabilities during the COVID-19 pandemic. Tizard Learning Disability Review
- Flynn, S, Hatton, C and The Coronavirus and People With Learning Disability Study Team (2021) Health and social care access for adults with learning disabilities across the UK during the COVID-19 pandemic in 2020. Tizard Learning Disability Review, 26(3), pp 174-179
- Bradshaw, J, Flynn, S and Hatton, C (2020) Coronavirus and people with learning disabilities: What are some of the issues for family carers supporting people with profound and multiple learning disabilities? PMLD Link, 32(3), pp 44-45
Team
Research team
Lead researcher
- Prof Chris Hatton
- Prof Richard Hastings. University of Warwick
Co-applicants
- Prof David Abbott, University of Bristol
- Dr Stephen Beyer, Cardiff University
- Dr Jill Bradshaw, University of Kent
- Dr Nick Gore, University of Kent
- Prof Pauline Heslop, University of Bristol,
- Prof Andrew Jahoda, University of Glasgow
- Anna Marriott, National Development Team for Inclusion
- Prof Katrina Scior, University College London
- Dr Laurence Taggart, University of Ulster,
- Prof Stuart Todd, University of South Wales
Researchers
- Dr Sue Caton, Manchester Metropolitan University
- Dr Samantha Flynn, University of Warwick
- Dr Amanda Gillooly, University of Glasgow
- Roseann Maguire, University of Glasgow
- Dr Edward Oloidi, University of South Wales
- Dr Peter Mulhall, University of Ulster
Partner organisations
- Learning Disability Wales
- All Wales Forum of Parents and Carers of People with Learning Disabilities
- Scottish Commission for Learning Disability
- Promoting A More Inclusive Society (PAMIS)
- Positive Futures
- Mencap Northern Ireland
- Learning Disability England
- PMLD Link
Funding
With funding from
This web page summarises independent research funded by the Department for Health and Social Care (DHSC) – National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) – Medical Research Council (MRC). The views expressed on this page are those of the author(s) and not necessarily those of DHSC, NIHR, UKRI or MRC.
UK Research and Investment
Contact
Contact us
For general enquiries, you can contact the Health, Psychology and Communities research centre.
