Lockdown has affected everyone over the past three months and people with a learning disability are no different; at times facing their own unique challenges. For this reason we wanted to raise awareness of life in lockdown as part of Learning Disability Week 2020 and support Mencap’s campaign on the importance of friendships during this unusual time.
Sally Bayliss is a learning disability nurse with over 28 years' clinical experience in adult and child learning disabilities, mental health and behaviour management and is an operations manager at Bush & Co. We spoke to Sally to understand more about life in lockdown for our clients with a learning disability, the anxieties they have and how we’re adapting to support them further.
How do people with learning disabilities cope in isolation?
It does depend on the person, their motivations and their particular disability but on the whole they find it difficult and it has an impact on their health. We know from years of research that people with a learning disability are less likely to access health services (Emerson and Baines, 2010) experiencing significant barriers in accessing services (Bowness, 2014). This means they have poorer health outcomes than the general population, increasing their risk of heart disease and stroke (Vatorta et al., 2016), for example, but similarly mental health is impacted severely; more prevalent in those with a learning disability than those without (Burke, 2014). They typically have fewer friends and smaller friendship circles because they participate less in the community (Kamstra et al., 2015). Where isolation can mean people are at home not engaging in exercise and adopting unhealthy eating habits it can also mean people are suffering from loneliness and feeling secluded from their community.
How do people with learning disabilities build friendships in usual circumstances?
For many years there has been lots of work to support people out of residential settings and back into the community to live an independent life but one of the biggest impacts on their socialiasation is that people with a learning disability were rarely asked what they would like, they were not consulted with regards to the compatibility of their new housing situation or place in the community.
For some people I’ve worked with, they might have a friendship they have from school but their social networks tend to be quite small, a select group of friends. In the main their networks have been family members and where they have friends, it’s friends of family who feature most; people who are known to the family already.
This can be considered from a point of view of protection, as our instinct is to maintain safety and the families of people with a learning disability do as much as they can to protect their most vulnerable.
Like all of us though, being involved in something meaningful is important; that sense of belonging, feeling valued and included and it’s important for people with a learning disability to be able to access social networks outside of the family and home which they are unable to do at the moment.
What challenges and anxieties have emerged for people during lockdown?
Throughout lockdown people have felt ‘shut away’ and for a person with a learning disability their routines are disrupted to a point where it can have an impact on their behaviour and increase their anxiety. I have recently read that local self-advocacy groups have been talking to people about how they are feeling and for some people they are confused and struggling to understand what is real and what isn’t. They also struggle with knowing what is guidance and what is compulsory and this brings additional anxiety. They report that they know they have to stay at home but in many cases really aren’t sure why (People First, 2020).
Those who are also having to shield have greater concerns. Some clients can only see their support worker from the door when they drop off shopping or check in on them and then the door closes and they’re alone. Others have a real worry about catching something, they ‘don’t know what people have got and if they are going to get it’. This can impact on behaviour or their mental health which may mean they become angry, depressed or withdrawn. Others reported a fear of dying or what would happen to them if someone in their social network dies. There have also been occasions where they have lost someone they are not able to grieve.
The clients we work with have experienced the cancellation of out-patient appointments or therapy sessions that used to happen regularly, which is increasing people’s anxieties and frustrations. We work closely with them to prepare and make progress towards attending appointments, so when they are cancelled with no rearranged dates it is the case managers who support the client in addressing situations on a daily basis.
How has case management evolved for people with learning disabilities throughout lockdown?
There’s definitely been a shift in focus but that focus on outcomes still remains paramount. Goals are still in place but it’s really important we also focus on mental health so that this doesn’t become a barrier to rehabilitation.
I’ve seen some great examples of how case managers and support workers are putting new ways of working in place or providing coping strategies during this unprecedented time. Many case managers are putting telephone or video call rotas in place so the whole MDT is focused on staying connected to the client where they can be called once a day and others have been working to put new technologies in place to make it easier for the client’s to stay in touch with friends and family and reduce isolation. The planning is completed alongside clients so they feel in control too, supporting with developing their confidence, self-esteem, skills and independence.
What top tips can you share for working with people with a learning disability through lockdown?
My first tip would be to keep people occupied which will support to engage people, reduce anxiety and frustrations while continuing to develop skills and independence. Engaging and communicating with the client is key, talking to them, asking what they want to do, offering different choices that the client has expressed an interest in, ensuring they are included and are the ultimate decision maker. Where they may need support is in deciding what is possible and/or available within a safe environment. A really good example I’ve seen online are Cooking Clubs; accessible cook-along sessions which are a great way to stay occupied, engage in activity but also be mindful of eating well.
Secondly I’d say it’s great to make use of the environment they already have around them. Our case managers are ordering or renting equipment that can generate activity around the home including yoga mats and boxing equipment. It was also lovely to hear that gardens were being used as a quiet place to escape to (and provide sanctuary) and where garden tools and greenhouses being introduced, resulting in a blossoming garden.
Lastly I’d say it’s (mostly) important to help overcome anxieties with some fun. Our case managers are thinking innovatively all the time but so are support workers. Music is a great tool and we have one client with a support worker who plays the guitar and writes funny, on the spot songs linked to what’s happening in that client’s life or their worries. It’s about turning an anxious time into a positive experience.
Sensory games and tasks are important too and people are finding things around their home to make great resources such as ‘twiddlemuffs’ which can keep hands warm but have sensory textures and materials sewn in to them like buttons, velvet, bows and bells.
Where can people reach out to for further support?
Learning Disability England have issued some great Vlogs and posters to help people understand Coronavirus and summarising the Government’s guidance as well as how to stay connected. I’ve also seen some great ideas for staying occupied such as friendship jars which are also a great sensory activity.
Books Beyond Words are also supporting to help explain Coronavirus and the current situation. At the moment there are some free online versions people can make use of including ‘Beating the Virus’ and ‘Good Days, Bad Days’.
Healthwatch are also using their community forums to ask about how people are feeling and what they’re struggling with, offering ideas and practical resources to support people and Mencap have activity ideas and resources and their Gateway Club which is helping people to increase their friendship groups:
Brain training apps as well as online yoga, exercise classes etc have all been great tools for people during lockdown but for those who prefer to reduce their digital screen time, wordsearches and mindfulness colouring (free resources which can be printed) are great ways to stay calm and focused.
The National Theatre have been screening live performances of theatre shows for those who are interested in the arts and radio and podcasts are brilliant distractions for people too.