At the tail-end of last year, the disability charity Hft published a report highlighting the enduring loneliness and structural barriers to friendship and connection many people with a learning disability face. The charity Stay Up Late could have the answers.
The report, entitled ‘Lockdown on Loneliness’ found that experiences of loneliness were not limited to lockdowns, with more than a third (36%) of people with learning disabilities saying they felt lonely nearly always or all the time.
A similar number of people (37%) said they hardly ever or never go out to socialise, while a third (33%) said they did not feel part of their local community.
This is not because people with learning disabilities do not want to socialise, but rather that they lack the support to do so, with two thirds (66%) saying they would like more support to do social activities and make friends.
To tackle these barriers, Hft are calling for: a social care reform to address loneliness among people with a learning disability; better support for people with a learning disability while finding a job and throughout their working life; and improved disability awareness among the public.
In the meantime, however, individual organisations and charities are doing what they can to ensure that people with learning disabilities live active social lives and spend time with others who are not their care workers or family members.
One organisation, which is a beacon of hope for people with learning disabilities, is the charity Stay Up Late. We spoke to founder Paul Richards, who has been campaigning for better social lives for people with learning disabilities for the last 15 years.
The story behind the charity begins in the 1990s, when Paul was in a punk band called Heavy Load with four other men, three of whom had learning disabilities.
Heavy Load used to play all around the country, and they noticed that often just as they got on stage (usually at around 9pm), many of their fans who had learning disabilities would be led out by their support workers as the end of their shift neared.
Paul and his bandmates felt it wasn’t fair that people with learning disabilities were having their evenings cut short just to fit in with strict rotas implemented by care providers, so they set out to change things.
Heavy Load founded the Stay Up Late campaign in 2006 and the band continued playing for the next few years. However, Paul knew it couldn’t last forever, so he registered Stay Up Late as an official charity in 2011 to carry on the work they had already achieved.
Ten years later, the charity is hugely successful and helps hundreds of people with learning disabilities to live active social lives using various methods.
“As a charity, we do two main areas of work,” Paul explains. “One is the campaigning work, which is where we started from, and that’s trying to influence change in policy and commissioning around learning disability services. The other is our volunteer befriending service that we do through Gig Buddies and Sports Buddies, which are practical responses to the problem.”
Paul and his team set up Gig Buddies in 2013 after a conversation at a trustees meeting. “We were saying there must be people who drive to gigs and who’ve got empty seats in their cars, and we tried to work out how we could put people with learning disabilities in those seats,” he said.
“We realised what we were talking about was a buddying scheme, so we set up Gig Buddies initially just in Brighton and Hove, but now we have 15 projects set up in the UK and two in Australia, with the possibility of more joining later this year.”
Paul explains that the charity works on the basis of matching people around a shared interest, so that both people benefit from the experience. It also gives people with learning disabilities the chance to form a real friendship with someone who is not being paid to support them.
While there are plenty of events put on for people with learning disabilities, Paul says there’s always the danger that these events become “a well-meaning form of segregation”. Instead, Paul believes that people with disabilities should also have the chance to go and see “regular gigs or go to the local pub for a folk night, or whatever it is they’re interested in.”
He continues: “We’re not trying to impose a reverse curfew or say that people should be having wild parties every night, but rather that people with learning disabilities should have the choice to live their life how they want to.”
Since the start-up of Stay Up Late, some care homes and supported living accommodations have changed the way they organise staff. In fact, after listening to Paul speak at an event, one supported living service changed all their rotas to make them much more flexible. While this didn’t go down well with some of the staff at first, it ended up “completely changing the way the staff saw their work.”
As Paul explains: “Before, say if a staff member was supporting ‘Bob’ to go and have a pizza, the support worker may be very transactional about that. They’d support Bob to go out to a restaurant and then come home. But when they changed it so there was no time limit on when Bob returned, they realised eating the pizza was just a small detail, almost a by-product of that night out.
“Staff then spent more time concentrating on the quality of transport, the places they were going to and who they were going to meet. Not only did this completely change things for Bob, but it also helped the staff to enjoy their work more.”
As a former support worker and registered manager himself, Paul notes that the charity is not trying to imply that support workers are not flexible, but it rather aims to promote “a shift in mindset which encourages flexibility for staff and enables people with learning disabilities to do what they want.”
When the pandemic hit and restaurants, pubs and music venues were forced to close their doors to the public, Paul and his team began to think of new ways they could support people with learning disabilities to continue socialising.
While the charity moved many of its services online, offering virtual socials and coffee mornings, the team also realised that around a quarter of the people they support did not have access to a smartphone or laptop.
Stay Up Late managed to secure some funding for smartphones and encouraged buddies to chat on the phone or virtually watch a TV programme together, but they were concerned this wouldn’t go far enough to stop people from feeling lonely.
So, Stay Up Late started up a new project called Sports Buddies. Sports Buddies works in a similar way to Gig Buddies, but instead matches people up based on a shared interest in a particular sport, rather than music.
“People became used to being significantly less active during the pandemic,” Paul explains. “So, we tried to hit two things at once and support people to get active, while also doing that with somebody who’s their friend.
“We asked people to commit to a weekly activity to get people into the habit of doing something active on a regular basis. But our definition of sport is very loose, it could be walking, football, bowling, dancing, yoga, a walk in the countryside – anything that gets people moving and gets their heart going,” said Paul.
Before the start-up of the new project, the charity did some research about what some of the obstacles were for people starting exercise. A lack of motivation, not knowing what activities are going on in the community, not having someone to exercise with or the confidence to try new things were frequently noted, as well as practical problems such as transport issues or a lack of time.
Paul hopes the new project will help to provide a solution to some of these problems, but the demand for buddies is rising and there is currently a long waiting list of people waiting to be paired up.
Right now, Stay Up Late are trying to raise funds to create a new role of an Outreach Coordinator, who would do targeted volunteer recruitment to get more buddies enrolled on the programme and ensure the charity is reaching the people who are most in need.
Paul says that anyone who wants to help the charity could do so either by volunteering as a buddy, or by fundraising for the charity.
“On a wider level,” Paul suggests, “businesses could look at encouraging their staff to volunteer for the projects as part of their corporate social responsibility, in exchange for some time off or something like that.”
“If Gig Buddies is currently not operating in the area you live in and you know of an organisation that could be a good host, please put them in touch so we can discuss it with them,” Paul adds.
To see a full list of where Gig Buddies operates and to sign up yourself, visit the Stay Up Late website.
For further information, please email [email protected].
