Peer-support groups play a valuable role in helping people with learning disabilities to gain confidence and skills to take part in activities in their communities. For the most part, these groups have adapted well to the Covid-19 pandemic in keeping people connected, but issues remain.
Researchers at Southampton and Dundee, led by Dr Andrew Power, as part of the Self-Building Our Lives project, uncovered a wide variety of these groups and what they do, including self-advocacy organisations, friendship and dating clubs, neighbourhood voluntary associations and local community meet ups.
At a recent webinar organised by the research team, entitled Re-Connecting Our Lives: How people with learning disabilities are getting back to building community lives in the wake of the pandemic, held online on 23rd November 2021, learning disability groups around the country were invited to share their experiences and lessons learnt.
One of the contributions, jointly presented by Kerry Martin (Project Worker), Chris Mellor (Project Worker), Laura Dunn (Operations Manager) and Zoe Howe (Project Manager) from People First Dorset, shared how supporting people to access and learn about methods of communication to connect online was particularly challenging.
Kerry highlighted her experiences of feeling very stressed and anxious at first when learning how to use online applications such as Zoom, but felt she became comfortable with it quicker than she thought and then told other people it isn’t quite as scary as it seems. Peer-support groups have played a vital role in helping people like Kerry overcome anxieties and learn to connect online.
One of the positive outcomes of more people using online programmes has been that it’s easier for peer-support groups that are spread out geographically to meet online and communicate more regularly. Some groups have used novel approaches to get people involved, including learning Makaton and using a calendar of wellbeing activities. However, Kerry stressed how different methods of communication are needed, including picking up the phone, as there are some people who don’t or can’t get online.
John Paul Donnelly, self advocate from Glasgow Disability Alliance (GDA) shared how the organisation would run a ‘wellbeing’ phone call every two weeks and check in with all their members to see how they were coping as many were shielding and some people were feeling very isolated and anxious – particularly given the lack of clear government responses to the pandemic for people with learning disabilities.
A major part of the support that organisations like GDA provide has been about helping people ‘keep busy’ with various online activities like dance, painting, exercise, and yoga classes. Some groups have also created ‘social story’ videos of people going out, using a mask, using hand gel, to help people who may be anxious about this.
This mixed approach of multiple forms of communication, has meant that groups like People First Dorset have seen a growth in membership during the pandemic. Groups that couldn’t connect before now could. Although a steep learning curve, many other groups at the webinar reported how they have negotiated this successfully for the most part.
Despite these benefits, Covid-19 has left some longer, more challenging legacies. Throughout the pandemic, there has been a certain proportion of people with learning disabilities that have not been able to engage with online communication. Some people have faced issues with accessing mobile technologies and have not been supported to use them.
One example given was Impact Advocacy in West Sussex, who had offered a range of support to their self-advocates to engage online. Yet despite their efforts, to date only about a quarter of their self-advocates engage with them online.
Feelings of boredom, anxiety about getting out, and the loss of social skills continue to persist for some, due to not having opportunities to reconnect. Matthew King (self-advocate, Voiceability Southampton), another presenter at the event, highlighted the loss of fitness due to the restrictions with using the gym.
Helping people re-connect has become one of the key issues that peer-support groups are seeking to address. One lasting concern is about the people who remain stuck at home and isolated. Peer-support groups are well placed to tackle the loss of independence and wellbeing among people harder to reach. Having to adapt to the pandemic has meant these groups now work in more hybrid ways. However, they cannot do it all by themselves.
IT training and encouragement for using technology for support staff is also important. Sometimes, the root of digital exclusion of people with learning disabilities is down to the lack of support. According to Prof. Melanie Nind, a member of the research team, “so much depends on having good support staff. Good support staff will help get people connected, and the bad ones won’t.”
Sadly, the pandemic has had a detrimental impact on the numbers of support staff within the social care sector. This has meant peer-support groups and families are working harder than ever to support people to reconnect and to reach out to the significant few who remain excluded.
Full details of the webinar, including recordings of presentations, are available at: Self-building Our Lives
Dr Andrew Power, University of Southampton
