Ciara Lawrence and Edel Harris, Mencap
Clear communication has been vital during the pandemic. It’s a key priority for learning disability charity Mencap, from accessible health advice to the charity sector’s own seat at the table. Knowledge & Learning Manager Zoë Anderson hears from chief executive Edel Harris and from Ciara Lawrence, a Mencap information officer who has now joined the charity’s strategy team.
Covid-19 has hit some groups and communities harder. The Office for National Statistics found that the risk of death from coronavirus was 3.7 times greater for people with a learning disability. Many have been cut off from their usual support and connections, or have found it hard to understand the changing rules.
In England, the National Lottery Community Fund supported Mencap’s Home Not Alone project with a grant of £100,000. Working to reduce loneliness, the project helps staff, volunteers and people with a learning disability to become digital champions, delivering online activities, sharing resources and codesigning the programme. In Northern Ireland, the Fund has also supported Mencap’s work on early intervention at home during the pandemic.
Explaining lockdown for everyone
Ciara, who has a learning disability, speaks passionately about the impact of Covid-19 on disabled people.
“They have been put on the back burner. There hasn’t been enough good, accessible information. Many people have been coping without their usual social care support, so haven’t had help to understand the guidance.”
Because people with a disability may be more vulnerable to Covid-19, it’s particularly important that they can understand the guidance, which has often changed or been updated. But not everyone has the support to do that.
“When the first lockdown started, I didn’t understand what I was allowed to do,” Ciara explains. “It took a lot from my mum – virtually, on the phone, by email – trying to explain it to me.”
Disability charities and organisations developed accessible advice, working together to avoid duplication. “We’re very proud of the role we’ve played in translating this ever-changing guidance,” explains Edel Harris.
“We also know that there are other charities who operate in that space. So rather than us all doing it, we’ve come together and worked out who’s best placed, who has the capacity or the resource to lead that work. That happened very quickly.”
At Mencap, Ciara created an easy read work group to develop better guidance. Working with other colleagues with a learning disability, “we took the documents, we went through them, we said, ‘Is this easy to understand? Are the pictures okay? Do they make sense? Is the text too long? Is the text too short? Are there easy words?’ We’re making sure that everything’s as accessible as possible. Because if we’re putting something up on our website, that’s our reputation.”
It’s also about recognising that the audience will have different needs and preferences. “There are 1.5 million people living with a learning disability in the UK,” Ciara says. “That’s a lot of people. I’m only one person. But if I work with lots of different people, we can make sure it fits everybody.
“That group has been so powerful, they’ve really helped make a change. Now Mencap are thinking about how they use them in the future, which is fantastic. I’ve seen some lovely feedback from families, saying, ‘I’ve now explained it to my son or my daughter, and now we understand.’ That’s great. That means we’ve done our job and we’ve done it really well.”
There are 1.5 million people living with a learning disability in the UK. That’s a lot of people. I’m only one person. But if I work with lots of different people, we can make sure it fits everybody.Ciara Lawrence, Mencap
A clear voice for the sector
For Edel, clarity and collaboration are essential in how the sector speaks for itself and those it supports. “I don’t think the charitable sector has one voice, particularly in England,” she argues.
She compares it with her years working in Scotland, where, “the third sector did have a voice, did have a seat at the table. Whereas I think we have so many trade associations, representative bodies… Covid has exposed this: we’re all speaking to the same people, trying to lobby and change things, and we’re all tripping over each other. We need to have a louder voice and we need to have one voice.”
How does she square that with the need to recognise the diversity of the sector, which has many different opinions and points of view?
“If I knew the one-sentence answer to that, I’d probably be a very rich woman! There are so many wonderful community and charitable organisations, that provide that vehicle for their particular issue or group of people’s voice to be heard. You don’t want to lose that. But I’m thinking more of being a part of a national response. I’m thinking more strategically when I’m thinking about one voice for the sector.
“We’ve been asked to be part of lots of meetings and forums and task groups. They’ve all been relevant and important, and yet when you go to the meeting, it’s all the same faces you see around the table. It’s a very crowded space. What’s the role of the charitable sector in a national crisis, as being an equal partner in determining the response? In the way that the NHS, the local authorities, the government work together at that strategic level.”
Vision and values
Edel also looks for another kind of clarity. “When it all boils down to it, if you’re a charity you have to have a clear purpose - a vision and a set of values. When you strip away everything else, that’s what holds you steady when you’re responding to a crisis.”
Mencap began work on a new strategy at the start of 2020, before the pandemic. “So we had already started to check in with ourselves, to look at our vision for the future.” Covid-19 has “accelerated all that thinking.”
What is the vision? “For the UK to be the best place to live a happy and healthy life if you have a learning disability. Our whole future strategy is based on the premise of continuing to listen to, be genuinely led by people with a learning disability and their families. We’re taking a much more community and partnership focused approach to the way that we do things in the future.”
From that starting point, they “worked backwards, really, looking at our organisational values, our purpose. Are there other organisations better placed to deliver the impact we want to see for people with a learning disability? How do we play a different sort of role in achieving that vision – not necessarily having to do it all ourselves, but how do we work in partnership with others and support others to make great things happen?”
One of the answers is “reducing complexity. In the way charities are governed and operate, the way we attract funding, the way we measure impact – there’s a lot of inefficiency.” During the pandemic, “we’ve all demonstrated that we can work in a different way. And sometimes I think we overcomplicate things.”
Instead, she’s looking for “the type of culture that allows for agility in decision making. We’re certainly working towards having a much more empowered culture, so that the decisions that need to be taken in that instant can be taken by people who are best placed to make them – so stripping out a lot of layers of hierarchy and bureaucracy.”
Edel sees financial sustainability as a key lesson from the pandemic. “I’ve worked in the charity sector for over 20 years. We’re always walking that tightrope between financial security, rather than sustainability, and just getting by.” Even in normal times, it’s “hard to find your place on that tightrope. So I think there’s got to be a wake up call to the sector and to society. We cannot expect charities, who are providing part of the national response to a crisis, to be forever in that place where too much money is too much, and not enough money is not enough money. The whole idea of a financially sustainable sector is going to be critical, particularly for charities who rely on one or two income streams – and many of our network partners are in that position.”
And for Mencap in particular, social care reform is a priority, “at all strategic levels. If we get to the end of this crisis and haven’t taken an opportunity to value the social care profession, to see it as a sector that should be invested in, not as one that’s a drain on public finances, then we should be ashamed of ourselves.”
Value the experts
Ciara points out that people with a learning disability have valuable insights and knowledge to contribute. “They can tell you their experiences from their own mouth. And it helps when they speak up.”
She wants more understanding. “For me, it’s really important that people meet people with a learning disability and actually talk to them, get to know them, hear their stories. That makes a powerful change.”
As well as recognising the experiences of people with a learning disability, this would open up their skills and talents. “They have so much to give. They can give you training, they can give you expertise, they can give you advice.” People now contact her through social media: “Now they know I’m there. I’m the expert in learning disability, I’m the expert in easy read, I can help them.
“So it’s about, let’s all work together. Come to people with a learning disability, talk to us, meet us. And they’ll learn from our experience what they need to do to make things better.”
Let’s all work together. Come to people with a learning disability, talk to us, meet us. And they’ll learn from our experience what they need to do to make things better.Ciara Lawrence, Mencap
Office for National Statistics, Updated estimates of coronavirus (COVID-19) related deaths by disability status, England: 24 January to 20 November 2020
Gov.UK, Coronavirus (COVID-19) in the UK Easy Read summary
Edel Harris and Ciara Lawrence spoke to Zoë Anderson on 6 and 8 January 2021. This page was last updated on 24 March 2021.