Using technology to support people with learning disabilities to stay well and connected during lockdown

Photo by fabio on Unsplash

 

We have three days before we enter a second lock-down in England. During the first lockdown I (with Liz Tilley, Jan Walmsley, Lorna Rouse, Louise Wallace and Shawn Picken) conducted some research into how technology was being used to support people with learning disabilities and to try and capture what this practice looked like and the factors that influenced whether and how technology was used. I am still in the process of writing and editing the ‘posh’ report of my findings. I hope to have this completed in the next week or so. But while I finish it off, I think it is important that I share what I have learnt in order to help those who support people with learning disabilities prepare for the next lockdown.

The lessons for supportive practice that I will share with you in this blog are drawn from two sources:

•  A survey of 104 supporters (parents, siblings, educational, health and social care professionals, support organisations, learning disability charities, day service providers, advocacy, and self-advocacy organisations.
•  Interviews with 38 supporters.

 What has technology got to do with staying well during lockdown?

 The participants in the survey and interviewees reported that many of the people with learning disabilities that they supported during the first lock-down experienced:

• a great sense of loss and boredom because their routines were disrupted, and they were no longer able to engage in the activities that they valued and enjoyed
• a persistent sense of anxiety because it was not clear when they would be able to return to these regular routines (e.g. engaging in self-advocacy group meetings or attending day services or college)
• significant loneliness because they were missing out on social contact with family, the friends they had made whilst attending regular activities as well as paid for support that was suddenly withdrawn.

All the participants shared how their concern for the mental health and well-being of people with learning disabilities led them to investigate how they could use technology to support them to stay well and keep connected.

In our own lives, during lockdown, many of us have turned to technologies such as WhatsApp and Zoom to stay in touch with friends and family. Many of us have also used Zoom and Teams to enable us to carry on working- to stay usefully occupied. This is exactly what the supporters in my study did. The technologies they used varied, and the ways they used it varied but overwhelmingly they all told me that, with support, many people with learning disabilities were able to use technologies and benefitted enormously from the being able to stay occupied and stay in touch.

It is important to acknowledge that many of the supporters told me that in addition to technology, they still used more traditional means of communication such as mailing out printed newsletters and activity packs. Technology was a part of a wider ‘support practice’ but nevertheless it was an important part.

 But people with learning disabilities can’t use technology, so there is no point in trying to use it with them during lockdown- right?

 Wrong!

 A really strong message that came through from the interviews, was that if people with learning disabilities had access to technology and if they had the right kind of support, they were more than capable of using it. Furthermore, many supporters shared two key things they had learnt about the abilities of people with learning disabilities during lockdown in relation to technology:

• In some cases, supporters told me that the people with learning disabilities were more knowledgeable about technology than they were
• In some cases, supporters told me that during lockdown, they had seen people with learning disabilities grow in confidence and competence as they learnt to use technologies during lockdown that they had not used before lockdown

In other words, the lockdown had opened their eyes to just how capable people with learning disabilities were. Furthermore, many of the self-advocates that we spoke to were really proud of their technological achievements during lockdown.

One thing I would particularly like to stress is that whatever the label that had been applied to a person with a learning disability (mild, moderate, severe, profound) supporters were sharing with me how all of them were able to use and benefit from technology during lock-down in some way. Indeed some of the most creative uses of technology that I learnt about were from three college lecturers who used Zoom with people with profound and multiple learning disabilities in order to offer activities such as music, drama, cookery and story-telling.

What kind of access to technology do people with learning disabilities need during lockdown?

 The first thing that many supporters told me they did when the first lockdown happened was to contact all the people with learning disabilities that they supported in order to find out what technology they had access to. For those they managed to contact and stay in contact with during lockdown- smart phones and tablets were most commonly reported devices. There were however several barriers that needed to be overcome in order to ensure these devices could be used easily and effectively:

• For smart  phones, there were often problems in that the contract the person with a learning disability had with the network provider did not have enough data to enable them to engage in ‘data-expensive’ activities such as WhatsApp or Zoom calls.
• For tablets (and laptops) there were often problems with remembering login passwords, particularly where the person with a learning disability was in supported living or a care home and someone had set up the tablet for them and then not recorded or stored the passwords.
• For those people with learning disability that lived in care homes and supported living there were often problems with a lack of access to wi-fi. Either the managers of the home would refuse to give the person with a learning disability (or their supporter) the code to the staff wi-fi system or the wi-fi that the person with a learning disability was paying for did not extend to the bedrooms, so that there was no private place the person with a learning disability could go to hold those all important but private online conversations with friends and family
• For those that lived in care homes and supported living there also problems with a lack of staff who were either unavailable, unwilling or lacked the skills to stay with the person with learning disability whilst they were using their technology (e.g. making a Zoom call) in order to help with logins and trouble-shoot if things did not quite work as expected.

Several supporters also shared their concerns that they had not been able to get in contact with those people with learning disabilities who were living independently. Perversely, because they were independent, they were more isolated during lockdown than other less independent people. And in addition, whatever package had been agreed in order to enable that independence, had not considered how having a mobile/smart phone (or indeed a landline in some cases) was a necessity.

There were also occasions where the person with a learning disability was living with elderly parents and those parents were either wary of allowing their adult-child to access the Internet or did not have the skills to support their adult-child to do so.

Some supporters, particularly those from charities, advocacy, and self-advocacy organisations told me that they had been able to buy tablets for some of the people with learning disabilities that they supported. Sometimes this was made possible by donations from local businesses, other times it was funded through local ‘digital inclusion’ related schemes. None of these schemes were learning disability specific and so the organisations were applying for funding in competition with others.

Some supporters, particularly those who were employed by support  organisations, shared with me how their managers had relaxed pre lock-down rules about not sharing mobile phones and tablets bought for staff and intended for ‘staff-only’ use with the people with learning disabilities that they supported.  

So, to summarise, access to technology is about having access to devices such as Smartphones and tablets and access to the Internet. But this on its own is often not sufficient. People with learning disabilities also need access to support that will enable them to use them the devices.

What does technology-mediated support for people with learning disabilities during lock-down look like?

 In order to combat boredom and a loss of routine many supporters told me how they used technologies such as Facebook, WhatsApp and Zoom to offer regular activities such as quizzes, exercise or yoga classes, games such as Bingo, drama, music and cookery.  A core aspect of this was having ‘fun’ and being comfortable with the idea that having ‘fun’ (as opposed to doing more serious activities that might happen during ‘normal’ pre-lockdown times) was permissible, even essential.  For many self-advocacy groups, Zoom enabled them to carry on offering regular self-advocacy meetings. For educational, health and social care professionals as well as Day Service Providers technologies such as Zoom enabled them to transfer their services online.

In order to combat loneliness and poor mental health many supporters used technologies to provide opportunities to chat and interact with others. The mobile phone was used to conduct regular (often weekly) ‘welfare checks. Indeed, some support organisations got funding to do this. Facebook and WhatsApp groups were set up to enable people with learning disabilities to chat with one another and their support workers. Sometimes this chat was covid-19 related, sometimes it was more general.

In order to address anxiety around how long lock-down would last and the ever-changing rules around ‘staying safe’ many supporters posted information on their organizational websites, or on organization owned Facebook groups.

From the experiences that supporters have shared me about how they used technology during the first lock-down I would characterize their use of technology to support people with learning disabilities as:

• Speedy
• Evolving
• Creative
• Fearless

Many supporters reacted instantly to the need to employ technologies to support people with learning disabilities during lockdown. They took a matter of days to find out what technologies people with learning disabilities had access to and to then to adapt their support accordingly. Some supporters who were employed by local authorities were much slower, typically reporting that it took weeks, sometime months for their organisation or service to figure out that they could continue to offer support- through the employment of technology of some kind.

For many supporters, their practice evolved overtime. They started off trying one technology and then as they learnt the strengths and weaknesses of that, they moved on to other technologies, or other ways of using the technology.

Many supporters found themselves having to find creative ways of providing remote ‘trouble-shooting’ support when the technology was not working or there were technical difficulties such as log-in passwords not working, or being knowing how to get onto the wi-fi. Other support practices were creative because they sought to put in place strategies for addressing issues of risk- particularly in relation to internet safety.

The practice of many of the supporters that I interviewed could be described as fearless, in that they were not afraid to try something and fail. Trying and failing, was better than doing nothing at all. Many supporters described how patient and adaptable people with learning disabilities were when things did not quite go to plan. They learnt that it was not the end of the world if things went wrong and that together with the person with learning disability they learnt, by trial and error, to overcome the technical difficulties.

 What advice would I give to anyone who is thinking of using technology to support a person with a learning disability during the second lock-down?

 This is a question I asked all the supporters that I interviewed, and the overwhelming answer was: Give it a go. I will leave with some quotes from their interviews, as they can say it better than me:

 Just do it. Like the Nike thing. Just do it. Don’t worry. Don’t panic. Don’t try to overthink it. Don’t try to over-plan it. Just do it. Just have a go. If it goes wrong don’t worry, you ain’t going to kill anyone by messing up a Zoom call. [education professional]

 I would say: do not be afraid. I’d say kind of try and do a bit of trial yourself in advance, there are lots of things that can go wrong, […] even if you’re not confident, they’d get a lot out of it, and even if speech and communication is a difficult issue, I’d still be prepared to try it because there’s lots of things you can do [parent]

Have a go. Don’t worry if it all goes hilariously wrong. Re-plan it for the next time. It will go hilariously wrong from time to time. There will be technology hiccups [education professional’

So, to not be afraid of looking into it and take every step you can to help people to move forward in learning to use technology. [self-advocacy organisation]

If you would like a copy of the final 'posh' report when I have finished it- please email me at jane.seale@open.ac.uk