More can be done to understand the pandemic’s impact on people with learning difficulties – new research will bridge the gap

By Professor Christopher Hatton, Department of Social Work and Social Care.

What do we know about Coronavirus and people with learning disabilities across the UK? Not as much as we should, as quickly as we should. Research methods have largely excluded those with learning disabilities, despite people with learning disabilities being between three to six times more likely to die from COVID-19.

This needs to change, to support people and families to live safe and fulfilling lives through the pandemic, and beyond.

Over a million people with learning disabilities live in the UK, experiencing deep and pervasive health inequalities compared to other people.

People with learning disabilities are more likely to be living in poverty and poor housing, to be unemployed, to be socially isolated, and to be on the receiving end of discrimination and violence.

Even before Coronavirus hit the UK, people with learning disabilities were dying on average 15-20 years younger than other people. As we find ourselves seven months into lockdown and the continuing pandemic, the inequalities that already existed across all demographics in the UK are magnified and undeniable.

Voices unheard

Some of these inequalities are well known, becoming the focus of urgent reviews and task forces from early in the pandemic. Because of these reviews, we now know that people are more at risk of dying from Coronavirus if they are older, male, from minority ethnic communities, living in areas of deprivation, working in lower paid insecure jobs that cannot be done from home, and living in large care homes.

Huge online surveys are telling us, almost in real time, how people are managing throughout the different phases of the coronavirus pandemic, and what is going to be needed to support different groups of people.

However, there is a huge gap in evidence when it comes to the experiences of those with learning disabilities. Health and social research has been shown to consistently not include people with learning disabilities. 

This can be as overt as excluding a person from taking part in research on the basis that they have a learning disability, or it can indirectly exclude people by creating barriers in participation, for example via complicated forms and online surveys. Many projects also rely on people having access to the internet.

The reliance on these real-time methods in gathering evidence quickly during the pandemic have all acted to indirectly mute the voice and input of a demographic significantly affected by the pandemic.

Effects on people and families

We do know that in the first wave of the pandemic, people with learning disabilities were between three and six times more likely to die of Coronavirus, at younger ages than people generally.

Groups led by people with learning disabilities and family carers across the UK have had to lead in finding out how people and families are managing through the pandemic. These groups consistently report a wide range of health and social care services being reduced or withdrawn altogether.

There is anxiety about catching Coronavirus, particularly among families caring for people needing 24-hour support. Some families are taking on extra caring responsibilities because a lack of testing. PPE makes it unsafe for support staff, who often work with several people, to come into the family home.

People and families find accessible information about rules and restrictions hard to come by and can feel socially isolated. Digital ways of staying connected have been vital for those people who have access to them, but they are not universally available. All these factors can have a real impact on the health and well-being of people and families that is worsening over time.

People and families will directly influence the questions we’ll be asking, and we will try and get results out as soon as we can to act quickly with organisations who can make a difference.

In response to this escalating issue, Manchester Metropolitan and the University of Warwick will lead a network of universities across the UK  in tackling the evidence gap, along with organisations of people with learning disabilities and families. This new UKRI-funded research project will find out how people with learning disabilities and families are managing through the pandemic.

We will talk to 1,000 people with learning disabilities, and survey 500 families of people with greater support needs, at three separate points, between now and next summer. People and families will directly influence the questions we’ll be asking, and we will try and get results out as soon as we can to act quickly with organisations who can make a difference.

Many people and families are feeling they have been forgotten. This research will be a faithful and loud representation of people’s experiences that cannot be ignored.