Doing our own research on Covid

Few studies on the pandemic have involved those with learning disabilities but people are now working with academics to highlight issues and ideas for change, says Gary Bourlet.

More than two years since the pandemic began, the winter season and new Covid variants are on the horizon.

This has led members of Learning Disability England (LDE) to discuss the virus’s impact on people, family carers and organisations providing support.

During the first year of the pandemic, Public Health England figures showed that people with a learning disability were six times more likely to die as a result of Covid than the general population.

But, while Covid has sparked many studies, there are few in which people with learning disabilities could easily be involved.

So LDE, a national membership organisation uniting people with learning disabilities, families, friends and paid supporters in a movement for change, partnered with researchers from 12 universities to do just that.

Areas for action

The Coronavirus and People With Learning Disabilities Study, launched in October 2020, is exploring how the pandemic has changed lives. It is drawing on the views of almost 1,000 people with learning disabilities across the UK plus 500 family carers and paid support staff.

LDE has been involved in the research in England, which has so far highlighted the most important issues for policy and practice in seven key areas. These are: jobs and money; mental health and wellbeing; services; health; using the internet; information; and the experiences of people and families with higher support needs.

The discussions and ideas for change emerging from the research have been wide ranging.

“Some people have said that they felt sad or down often or always,” says Tanya Woodhouse at user-led charity Connect in the North. “People with learning disabilities need better advice about mental health.”

A self-advocate at Lancashire charity Pathways says: “It’s OK sending out information in lots of different accessible formats but, at the end of the day, if it’s not the information we want and need, it becomes meaningless and actually wastes resources.”

A member of the Gr8 Support Movement for support workers said: “We’ve got to think more holistically and globally about supporting people. And who can do what best. There’s a little glimmer of hope that maybe people will be a bit more aware in the future.”

There needs to be a cultural shift that supports the idea of access to communication and connectivity as a human right.

Crucially, the research has explored how people, families and the organisations that support them felt when government lifted the last of the Covid restrictions on 1 April 2022.

Many LDE members have raised concerns that some people with learning disabilities are still at higher risk if they catch Covid. This is because they have weaker immune system or complex health needs, so Covid is still having an impact on their lives.

“It affected both me and David and his dad. That we were very, very frightened.

I still feel that way,” says Linda Storey, a family carer from Rotherham-based advocacy group Speakup.

John Casson, chief executive at national support provider L’Arche, notes: “We cannot let Covid turn back the clock for disabled people. The Covid response told people with disability: ‘You’re different – a patient to look after, not a person. A problem to manage, not a citizen.’ So how do we go forward, not back? We have learnt in L’Arche it can be done – if we trust people and empower them to make the decisions for their lives.”

Right now, the single biggest worry for LDE members as we move towards winter is the availability of the right support.

Jordan Smith co-chairs LDE’s self-advocate representative body, part of its main rep body, which is made up of self-advocates, families and professionals. Smith says: “We know lots of staff are going the extra mile to make sure people are supported – our members have told us. But difficulties in recruiting and retaining staff mean too many people are not getting the support they need to live good lives.”

Kate Chate, a family carer from Suffolk, said: “There is a crisis in recruiting and retaining people to support the people we love. Families have been scaffolding the care system throughout the pandemic and will not be able to manage to continue without respite.”

The research team is now carrying out the fourth wave of its work, with findings due to be published in early 2023.

As well as being involved in that research, LDE members and partners are working on our Good Lives: Building Change Together framework. As the previous issue of Community Living reported, this involves sharing ideas, resources and best practice to support all people with learning disabilities to live good lives.

As we learn to live with Covid, this collaborative approach is more important than ever, says Lisa Hopkins, LDE trustee and chief executive of SeeAbility: “Together, we are stronger.”

Gary Bourlet is membership and engagement lead at Learning Disability England