Ruth Northway, a Professor of Learning Disability Nursing at the University of South Wales spoke to us about some of these issues.
Sputnik: How has the pandemic affected people with learning disabilities?
Ruth Northway: I suppose the first thing to stress is that the term “people with learning disabilities” actually covers a very diverse group of people. So you would have some people with severe profound learning disabilities, perhaps who need an awful lot of support with many aspects of daily living. But you would also have some people who are living completely independently, people with mild to moderate learning disabilities.
So I suppose it’s affected people in different ways, the same as it has the rest of the population. But I think there's also a number of things which are emerging which suggests that perhaps it's impacted on particular ways for people with learning disabilities. I mean, one of the main ones which I referred to in the article I wrote was about the loss of services.
So if you take, for example, day services, a lot of people with learning disabilities would probably normally attend some form of day service or further education college or something like that. But of course, as soon we went into a lockdown that sort of ceased and hasn't really resumed as yet.
And I think that that means a loss of a lot of activity but it also means things like a loss of access to friends and activities with your friendship networks, your support networks. For families, it's also meant to be a loss of some respite during the week as well where family members could be doing other things while their son or daughter, whatever sort of relative was, was actually within some kind of daily activity. And we know the other things that it's impacted on, you know, loss of contact with family and friends, sometimes where people are living away from their family. There have been difficulties with things like visiting and obviously having to maintain social distance has sometimes presented challenges.
I think one of the big challenges has been changing information. I think probably all of us find that a challenge that what is acceptable one day perhaps is not acceptable the next day, where we wear masks, or 'do we wear masks?' things like that. I think when you've got a learning disability, sometimes you've got difficulties with understanding new and complex information. We've had a lot of that over recent months, and sometimes that's not always been available in an accessible format, like Easy Read, or sort of put in pictorial formats, so that people can understand more easily. So I think that's sometimes left people feeling very anxious and unsure about what they can do, what they can't do, and what some of the risks are.
Sputnik: Have there been any extra provisions put in place for people with disabilities during this time?
Ruth Northway: I think it's probably a mixed picture. I think in some cases, there have been some reasonable adjustments made to some policies, which have really been designed to accommodate the needs of people with learning disabilities. So for example, regarding visiting family members, here in Wales initially people couldn't visit but then the issue was raised that that was a problem for people with learning disabilities so there was an adjustment made to some of those regulations.
What we've also seen is some organizations doing a lot of work, to try and sort of develop easy to read information, trying to have central resources so that people could go on there and look for information about things like testing, about wearing masks, about what the current regulations are.
But that, again, is a challenge because it's changing so frequently, that information. I think it has been a major challenge for people to keep it updated and to keep it accessible. And I think some services have tried to adapt what they provide. So whereas people in the past perhaps would have had various health staff or social service staff visiting at home, people have been trying to do things like online visits and things like that, which hasn't been the same, but it's trying to maintain contact.
What I've also seen is that a lot of particularly self-advocacy organizations, organizations of people with learning disabilities, really trying to develop a lot of strategies to support their members and to keep people engaged in an activity, whether that's through things like Facebook, whether it's around having online discussions, things like that. So, I think there are pockets of really good practice, but possibly there's an awful lot more that could or should be done.