Page 10 - Community Living Magazine 36-1

covid
Doing our own research on Covid

Few studies on the pandemic have involved those with learning problem to manage, not a citizen.’ So how
disabilities but people are now working with academics to do we go forward, not back? We have
learnt in L’Arche it can be done – if we
highlight issues and ideas for change, says Gary Bourlet trust people and empower them to make
the decisions for their lives.”
Right now, the single biggest worry for
ore than two years since the formats but, at the end of the day, if it’s LDE members as we move towards winter
pandemic began, the winter not the information we want and need, is the availability of the right support.
Mseason and new Covid variants it becomes meaningless and actually Jordan Smith co-chairs LDE’s self-
are on the horizon. wastes resources.” advocate representative body, part of its
This has led members of Learning A member of the Gr8 Support main rep body, which is made up of
Disability England (LDE) to discuss the Movement for support workers said: self-advocates, families and professionals.
virus’s impact on people, family carers “We’ve got to think more holistically and Smith says: “We know lots of staff are
and organisations providing support. globally about supporting people. And going the extra mile to make sure people
During the first year of the who can do what best. There’s a are supported – our members have told us.
pandemic, Public Health England little glimmer of hope that But difficulties in recruiting and retaining
figures showed that people maybe people will be a bit staff mean too many people are not getting
with a learning disability were more aware in the future.” the support they need to live good lives.”
six times more likely to die as There needs to be a Kate Chate, a family carer from Suffolk,
a result of Covid than the cultural shift that supports said: “There is a crisis in recruiting and
general population. the idea of access to retaining people to support the people we
But, while Covid has sparked communication and love. Families have been scaffolding the
many studies, there are few in connectivity as a human right. care system throughout the pandemic and
which people with learning Crucially, the research has will not be able to manage to continue
disabilities could easily be involved. explored how people, families and without respite.”
So LDE, a national membership the organisations that support them felt The research team is now carrying out
organisation uniting people with learning when government lifted the last of the the fourth wave of its work, with findings
disabilities, families, friends and paid Covid restrictions on 1 April 2022. due to be published in early 2023.
supporters in a movement for change, Many LDE members have raised concerns As well as being involved in that research,
partnered with researchers from that some people with learning disabilities LDE members and partners are working on
12 universities to do just that. are still at higher risk if they catch Covid. our Good Lives: Building Change Together
This is because they have weaker immune framework. As the previous issue of
Areas for action system or complex health needs, so Covid Community Living reported, this involves
The Coronavirus and People With is still having an impact on their lives. sharing ideas, resources and best practice
Learning Disabilities Study, launched in “It affected both me and David and his to support all people with learning
October 2020, is exploring how the dad. That we were very, very frightened. disabilities to live good lives.
pandemic has changed lives. It is drawing I still feel that way,” says Linda Storey, a As we learn to live with Covid, this
on the views of almost 1,000 people with family carer from Rotherham-based collaborative approach is more important
learning disabilities across the UK plus advocacy group Speakup. than ever, says Lisa Hopkins, LDE trustee
500 family carers and paid support staff. John Casson, chief executive at national and chief executive of SeeAbility:
LDE has been involved in the research in support provider L’Arche, notes: “We “Together, we are stronger.” n
England, which has so far highlighted the cannot let Covid turn back the clock for
most important issues for policy and disabled people. The Covid response told Gary Bourlet is membership and
practice in seven key areas. These are: jobs people with disability: ‘You’re different – engagement lead at Learning
and money; mental health and wellbeing; a patient to look after, not a person. A Disability England
services; health; using the internet;
information; and the experiences of people While Covid
and families with higher support needs. restrictions are
The discussions and ideas for change lifted, some Alissa Eckert/Dan Higgins/Centers for Disease Control and Prevention; Christy Lawrance
emerging from the research have been people need
wide ranging. more protection
“Some people have said that they felt as they have
sad or down often or always,” says Tanya complex health
needs
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

10 Vol 36 No 1 | Autumn 2022 Community Living www.cl-initiatives.co.uk