The research team hosted a webinar, entitled Re-Connecting Our Lives: How people with learning disabilities are getting back to building community lives in the wake of the pandemic, on 23rd November, 2021. The event aimed to find out how groups and networks have responded to the challenges of the pandemic, and what they are doing now as the restrictions ease.

Dr Edward Hall welcomed everyone and introduced the focus for the day. With 30 people in attendance, mostly from voluntary peer-support organisations, this national online event was an opportunity for people to come together to share lessons from living and working through the pandemic, and to help plan their future activities in helping people to re-connect their lives.

Re-Connecting Our Lives - Introduction.mp3 

Matthew King (self-advocate) in conversation with Dr Andrew Power, highlighted the feelings of boredom, anxiety about getting out, and the loss of social skills, that continue to persist for some people, due to not having opportunities to reconnect.  Matthew also talked about the impact on physical and mental health due to the restrictions. His self-advocacy group, Busy People, supported by Voiceability Southampton, used novel approaches to get people involved, including trying to learn Makaton during their newly created Zoom meetings.

Re-Connecting Our Lives - Matt.mp3

Following this, and Kerry Martin (Project Worker), Chris Mellor (Project Worker), Laura Dunn (Operations Manager ) and Zoe Howe (Project Manager) from People First Dorset, in conversation with Dr Andy Coverdale, shared how supporting people to access and learn about methods of communication to connect online was particularly challenging. Kerry shared 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.

John Paul Donnelly from Glasgow Disability Alliance, in conversation with Dr Alex Kaley, shared how the organisation has made a ‘wellbeing’ phone call every 2 weeks to check in with all their members to see how they were coping. This was a lifeline for people who were shielding and some people were feeling very isolated and anxious. A major part of the support that organisations like GDA provided was about ‘keeping busy’ with various online activities like dance, painting, exercise, and yoga classes.

Re-Connecting Our Lives - John Paul.mp3

Following the presentations, Dr Ed Hall provided a short summary of the key themes. There was evidence of activities demonstrating how people were able to adapt to the restrictions, and to think of new ways of working and connecting. With new opportunities online, there are better opportunities to meet more often, but people need training and access. The Importance of advocates and support staff to enable self-advocates to stay connected will be crucial.

The presentations were followed by breakout groups, where delegates were asked to share their experiences looking back over the pandemic and looking to the future to consider the lasting impacts.

Re-Connecting Our Lives - Discussion.mp3

A summary of the key points is given below: 

• Switching online was a steep learning curve, negotiated successfully for the most part. National organisations could do more online events and include more people, when people can’t or don’t need to travel to an event. Finding the balance with hybrid events important. Mix of feelings between what people want though. Some people may want personal face to face contact. Online and hybrid ways of working will continue. 
• Online meet ups are also helpful to smaller local groups with members spread across a wider area that couldn’t connect before Covid but now could. E.g. in different areas that would have involved a long train journey and quite tiring. Going forward, it’s now much easier and more beneficial to meet monthly.
• Since the pandemic restrictions have eased, there are still lots of people who need support to reconnect in their old social circles. Many have lost confidence and are still feeling unsafe.  Certain proportion still cannot engage and are stuck at home.
• Shift to digital technology has pros and cons. Need to keep the good things about it going forward, while regaining the good things about meeting face to face that we’ve lost. One pro is that the pandemic has been good at forcing supporters to use technologies that they were cautious about. One con is that many groups now have online booking forms that are not easy-read, with no phone number to contact. Also, some pros for some people may not be a pro for others. E.g., Some people don’t like online GP portal and like to call. There is not a one size fits all solution. Important to give people a choice of options.
• Businesses that had welcomed volunteers with learning disabilities pre-Covid were no longer doing so. Volunteer-support organisations could consider create new community ambassador roles, e.g. supporting people who may need to pick up some groceries for an older person in the community.
• Peer support organisations have created lots of novel ways of helping people to stay connected including 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 anxious about this. 
• What is needed for individuals and orgs going forward: technology platforms, like zoom and whatsapp will remain part of what people use. Some people still don’t have the skills to use this. Training required, but also guidelines to ensure they’re a supportive environment.
• Some of the benefits were primarily driven by economics. The only thing to trump economics is the law, to ensure businesses don’t slide back. Fear that some of the benefits may be rolled back, given they were driven by economics. 
• Concern about people who aren’t in the room. IT training for supporters important, sometimes they are at the root of digital exclusion of people with learning disabilities. This is a ‘same old’ issue where so much depends on having good support staff. Good support staff will help get people connected, and the bad ones won’t. However, the impact of the pandemic on forcing people to leave the social sector has been significant, is going to remain a major challenge. 
• Future worries: Issue of self-advocates being anxious about going out and about, lost fitness, lost independence are issues we need to tackle, significant amount who remain digitally excluded. That gives us a to-do list.
• Future potential: People now have equipment, more access. Potential in the use of Alexa. Potential for hybrid meetings – some online and face-to-face. Hard to get right but lots of potential there.

Anon Feedback:

“I really enjoyed the discussion in our group and I’d like to stay connected, I found it really beneficial and if we did it again, I’d be happy to participate, I think it’s really good going forward. Many of us said I wish this had happened a year ago, but it’s a good start, thanks for doing this.” 

“We both really enjoyed preparing for the session. This was a really great occasion for sharing. The local authority hasn’t been great, so it’s been so helpful.”