Transcript: Supporting people with disabilities during the Covid-19 crisis

Podcast Episode: Supporting people with disabilities during the Covid-19 crisis

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
CM - Colin Millar
PR - Pete Richmond
ES - Emma Soanes

MD On this podcast we’re going to hear from a number of different disability organisations and we’re going to be speaking about how they are coping and dealing with the current crisis. So first up we’re going to hear from an organisation called SPAEN. They are the Scottish Personal Employers Network. The network supports people with disabilities and long-term conditions in improving the use of self-directed support. So we heard from Colin Millar.

CM So SPAEN has been around for twenty years now. We support people who want to use a direct payment, or what’s not option 1 of the SDS Act, to employ their own carers, or personal assistants as we refer to them. So we basically become that back office support offering advice on HR, health and safety, payroll, all these bits and pieces, just to enable people to use the care and support that’s available to them to live their best lives.

MD And now we’re facing a bit of a crisis, not only in social care but Scotland as a whole. I was reading on your website Colin that you provide support to individuals, so that could be PAs or employing PAs as well across Scotland?

MC Yep.

MD How does that affect your personal assistants?

MC So we generally just support the employers. There’s another kind of sister organisation, PA Network Scotland, who we work very closely with. They support the PA side, but certainly with the Coronavirus pandemic we’ve been getting a lot of calls from both PAs and employers asking a lot of questions around self-isolation, social distancing, how all that works, how to keep people safe, in the workplace what happens if a PA shows up with symptoms, what happens if your employer’s got symptoms. More recently it’s been around things like access to PPE, the personal protective equipment. There’s a lot of concern that the PAs aren’t able to access just basic things that they use in day-to-day work, such as hand gloves. I think more people are now looking for masks and things like that as well. So yeah, there’s been a lot of concern around that. One of the things that we’ve really noticed though which was quite surprising is the number of people who have either a care agency supporting them or are getting homecare services from the health and social care partnerships. A couple of different areas have had some real crises in terms of staffing levels and the ability to continue providing support to all the people that are currently using those services. So we’ve had quite a few phone calls from people who either they’ve had homecare withdrawn with kind of really short notice, or a family member or someone that they’re caring for has had that. That’s caused some real difficulties. So yeah, we’re finding we’re kind of moving out our normal kind of sphere and dealing a lot with people that are perhaps on option 2 or option 3 of the SDS Act and are having to look at making alternative arrangements now. Accessing PAs has become something that people are very keen to do. Certainly working closely with PA Network Scotland, we identified quite early that’s a crunch point for employers. So we tend to encourage our employers or our members to have contingency plans in place in case PAs do go off sick. They don’t have the same access to resources that a care agency or an HSCP would have. So these guys are very resilient. They’re very used to dealing with things on short notice, whereas people that have perhaps relied on more traditional services, they expected that contingency would be built in. So yeah, we’ve had a few folks now. As I say, we kind of contacted PA Network Scotland very early on and set up an emergency care register. So initially we were anticipating PA employers who perhaps their PAs have displayed symptoms and aren’t able to come to work, but again more recently we’ve seen that it’s actually people who are using more traditional services phoning up and saying, “My traditional services have been withdrawn at very short notice. What can I do?” We’ve also had an influx of people who are happy to work as PAs register with that, and basically just now we’re working on matching people who require some emergency support and people who are able to offer that emergency support. So we’ve had a couple of really good success stories through that, but the problem is that obviously we’re a finite resource ourselves. So last week we’d a very kind offer from a gentleman who had a web platform, and he’s offered to work with us to adapt the web platform so that people can register themselves, and that’ll help us do the matching that bit quicker and certainly outside the office hours. So yeah, we’ve been really touched by the number of people getting in contact with us and offering that emergency support, and as I say, people who normally wouldn’t consider employing their own care assistants are coming to us and saying, “How do I go about this?” One of the big challenges is going to be getting the direct payments set up. So I’ve asked a couple of local authorities or HSCPs. One came back to me and explained that if somebody wants to move to a direct payment then they would have to go through a review process and they would need to contact their care worker and then have a formal review process. Obviously that doesn’t work in these circumstances because the folk are only asking for the emergency support because the service that they’ve got in place has been withdrawn at extremely short notice. So we’ve wrote to the cabinet secretary for health requesting that local authorities or HSCPs consider making emergency direct payments available to anybody who’s been affected by short notice withdrawal of more traditional care services.

MD I was going to say as well, Colin, that the kind of individuals, well, vulnerable people they call them, but I don’t like the word vulnerable and I’m sure you don’t like the word vulnerable either?

CM Absolutely.

MD But I know the biggest state of mind is kind of like up and down at the moment because they don’t know what’s going to happen tomorrow, never mind next week.

MC Absolutely.

MD So what’s a mind-set of them and also I know you’ve touched upon this earlier but what kind of guidelines have you put in place at the moment to support them?

MC So a lot of the comments that we’re getting back from people who are using the more traditional services, and certainly from unpaid carers as well who’ve seen SPAEN as being a huge help and resource for them in terms of just keeping up to date with information, keeping safe etcetera, some of the kind of stronger words that are coming through are things like isolated and abandoned. It’s quite sad that people are coming forward and saying that they’re feeling abandoned at this time. They feel like they’ve been deprioritised. They feel that because they’re not on the HSCP or the care agency list, that they’re basically out of sight and out of mind. This is a time where we really should be rallying together. So as I say, one of the resources that we put together was the emergency register, which just allowed people to access potential supports that are there. Some HSCPs have been absolutely fantastic, and North Lanarkshire in particular. They were very quick in getting in touch and telling us about their resilience committee that was working, talking about advice and support for things like social care. Again the guidance is always written towards perhaps homecare staff or agency care staff, but a lot of it’s very relevant to what PAs are doing in people’s homes. It’s very similar in terms of what the job actually is. It’s just how it’s delivered slightly different. They’ve been very good at giving us details about where people could perhaps access PPE. So yeah, we’ve put a lot of stuff out about things like absence, what do I keep paying my PAs, how do I make sure that my PAs are safe when they come to work and how do I make sure my PAs are safe outside of work as well. So it’s been really touching.

MD Next up we’re going to hear from a charity called Partners for Inclusion Group. They are an independent charity providing individual support for people with learning disabilities and mental health. So we spoke to the CEO of Partners, Pete Richmond.

PR Yeah, well we’re a social care charity. We support people who have a learning disability, physical disability, maybe with mental health problems, basically people who just require some additional support. We don’t like to have lots of labels around people because actually most of us have got one label or another, or two or three, and it can end up a very long list really. So it tends to be people who do have a learning disability and need help or support in daily living, whether that be 24 hours a day or just a few hours’ support a week. We do it in a way where it’s supporting people in their own homes or getting about from their own home. What we don’t do is support people in congregated living arrangements, certainly which we’ve not set up. There’s one or two people who do live in places like that but mostly it’s people in their own ordinary home going about doing their ordinary business.

MD So can you tell us what’s the views of people that you support? Are there any kind of issues at the moment in terms of you delivering the support to them? Are there any issues in the way?

PR Well we support going on for 120 people, and so 120 individuals all have their own individual points of view of their own individual support needs, so it’s very hard to generalise it across everyone. I suppose one of the factors which is different from those of us who don’t have direct paid support in our lives is that we’re all being told to not go out, and just have contact with people who are family members or household members. Inevitably, especially for those people who’ve got higher amounts of supports, say 24-hour support, you have a number of staff coming in and out, and with that does bring some additional risk, ‘cause you’ve got different people who are not members of your household, they’re members of their own household, coming in and out. So that raises if you like the concern a little bit higher, but there’s probably no way around that. We’ve tried to reduce the number of people going in there. Well that varies again across teams. So the really important thing is to be able to make sure we’re super-efficient on our hygiene, the guidance about hand washing, about keeping surfaces clean etcetera, and really being mindful of that, and of course there’s some people who we support, and some staff as well I should say, who have underlying health conditions, and so on each individual situation we take hopefully a consistent approach, but it varies around people depending on their particular circumstance. The first and probably the most important thing is that emphasis on hygiene, using the same national guidance we all see on the news, the TV etcetera. Some of that guidance we’ve adapted when we’ve tried to make it a bit more accessible and understandable for people. So for example, being a social care agency. Much of the earlier guidance especially was geared towards healthcare professionals about putting on all the personal protective equipment, and that wasn’t as relevant for us, not least because we didn’t have all the personal protective equipment, and so it has been a big emphasis on just that, those ordinary hygiene standards, but being super careful with that. Where we have been able to reduce the number of people going in and out of someone’s household, we’ve done that, and really trying to help the people who work for us and the people who we support to get a little bit more familiar where they can with technology. So we’re having this conversation on the Zoom app, so encouraging people to do that, and there’s Zoom, there’s WhatsApp, there’s Messenger etcetera, whatever makes sense for people, and ideally what they’re already familiar with. I have to say, there are a few people who still struggle with that technology, both people who work for us, people who haven’t necessarily got an internet connection. So where we can we’ve helped people even for instance get what you call a dongle, which gives you an internet connection, but again equipment is an issue for people. If you’re not used to having a computer, you don’t have one, some people don’t have a smartphone for instance. So it is limiting, but just trying to find different ways, and that’s improving all the time, and that’s not just coming from Partners for Inclusion as an organisation. It’s coming from people themselves, and they’re all making their own arrangements, which has been really encouraging to see for how people have pulled together, and just really shows you the capacity of people as well, where if there isn’t the guidance from outside people do sometimes actually figure out what’s going to work best for them. Does that make sense?

MD Yeah. Yeah, and so you were talking about IT that you use at home on Zoom. When things do go back to normal will you use IT more or would you go back to what you were doing before?

PR We don’t even know we’re at the middle at the moment of this crisis. I suspect it’s going to go on for an awful long time, so it’s hard to predict in the end how things will be, but I can say for myself personally, and I’m sure it’s true for lots of other people, I’m not a big IT person, I’ve not always been into all this, but I’m getting more used to it because I’m having to, and I suspect a lot of the people who we support and their support workers will get more used to it and perhaps when we finally do come out of this current crisis, yes we want to meet people face-to-face, but there’s some things you can do as well using technology, and perhaps we’ll all get a bit more familiar with that. So there’s learning for all of us really in it.

MD Okay. Finally, we’re going to hear from the chief executive of an organisation called Unity, and we’re going to be speaking to Emma Soanes, and she’s going to be speaking to us about a cafe that they run in the Merchant City in Glasgow called Spoons, and they run various pop-up cafes in Glasgow in the east end of the city.

ES Okay, so Unity is a Scottish charity covering Glasgow and the west of Scotland predominantly. So we have kind of four main strands of work that we undertake. So one of those is supporting adults with learning difficulties typically in a kind of day service type arrangement, but broadly people buy into that the bits that they want. So we tend to support people who have come and spoken to us and said there’s particular things they want to learn or get better at, or things like being independent or they want to think about working towards getting a job. So usually people have got some kind of goal in mind they want to work towards and they kind of join the day service for the bits that help them get there. So we have daytime support for people in Glasgow in West Dunbartonshire and in East Dunbartonshire. Some of that’s on a one-to-one basis and some of that’s working in groups where there’s groups of people who are all looking to do the same sort of thing, and it varies and changes all the time. Another strand of our work is working with carers. So that is anyone who is identifying as an unpaid primary carer for someone in their household or nearby, and that is broken down into kind of age categories. So we work with young carers. I think the youngest carer we’ve supported is eight, and then we work with adult carers who are often parents caring for a child at home, and we work with older carers and they are often older people who are caring for a partner very often. We also have a number of what we would describe as social impact projects, so short-term or local or community based projects that are about working with people who are affected by homelessness, poverty, hardship, and those change a lot as well and we’re just responsive to local need, and the fourth strand of our work is social enterprise. So we’re very supportive in social enterprise model. We operate three cafes through trade and we support people with learning difficulties to receive training and work experience in the cafes and ultimately become employed if that’s relevant for those individuals, and we provide free food through the cafes as well.

MD And I wanted to speak to you about the cafes that you run because obviously we’re in a bit of a crisis at the moment. A bit is an understatement. So how does that affect your business?

ES Yeah. So I suppose our organisation is relatively unusual in that we have a kind of business side of things and we trade, and currently we’re not, and then we also have the other side of our charity which is a bit more traditional in the sense that we have income and contracts and so on for the support that we provide. So it has been very much a game of two halves for us, this kind of scenario. We had three main priorities when this all happened. One was is everybody okay and what do we have to do to make sure that everybody is as okay as they can be. The second thing was money, what are we going to do for money. Thinking about what income can we retain and what income can we recover. So looking at those two things, and the third thing was what else can we do. So can we do something else during this period of time that’s different to what we normally do. So those were our kind of three points of discussion and priorities, and they continue to be. From the point of view of our service provision, most of that is either a mixture of local authority income, which I’m happy to say is continuing, but it also includes a number of families and individuals who pay directly through one of the self-directed support options, and that’s of course a very grey area in these circumstances because this has never been tried and tested before. So the notion of whether people pay for anything, for something, for how long, is still very much a kind of point of discussion. So we’ve made some assumptions that we will lose some income in that respect. The cafes are a different thing altogether. We kept the cafes open while it was safe to keep them open. We then moved to take-away when the guidance suggested that was the safest thing to do, and then I think probably within a week or less of moving to take-away we ultimately closed completely, just because the guidance kept changing and we were responsive to that. So we now have zero income across the cafes but we do have a relatively significant workforce, and so we’ve done two things with that. One is we have furloughed a significant percentage of the cafe staff because the income that pays for them is not currently being received. So we’re safeguarding ourselves in being able to claim back later for at least some of that money, but what we’ve also done is we’ve retained a skeleton staff, and we’ve got facilities and space in the cafes, we’ve got kitchen space, we’ve got food preparation areas and so on, so it seemed a no-brainer really to try and support some of the local communities with food. There’s a significant older population in the east end near to where one of our cafes was, and it just seemed to make perfect sense that we would partner up with the housing association there and focus on their older tenants who are isolated and not able to get out to get food, and so we’re doing all the food preparation in our own kitchens, we’ve hired vehicles and we’re doing food deliveries 3 times a week to the residents in the Parkhead area who’ve been identified as vulnerable, and we have a close working relationship with the Glasgow Night Shelter, where they accommodate asylum seekers who have currently been relocated to a hotel in the city centre, and we’re delivering there predominantly lunches. So we’re one of a framework of organisations helping to provide three meals a day into that provision as well. So the staff that are furloughed, it gets back to the original priority which was is everybody okay, because one of the rules of furlough is that you cannot undertake any work for us. We can’t have work related conversations with them, we can’t have work related communications written or otherwise, but of course we still want to keep in touch and we still want to know that people are alright. So we’re just trying to be very discreet about our communications and make sure that we keep in touch with people just around their welfare really, and that we include them in other things that are happening at work but aren’t about work. So for example, this Friday night we’re having a quiz night and a lot of the staff will join in on that. Well of course, furlough or no furlough, join in to chat to your colleagues, come and do the quiz. So yeah, so it’s really just trying to balance the rules with the need for keeping in touch, which I think is one of the most important things just now.

MD And finally I was going to say to you, how is all your staff, furlough or not furlough, how are they coping with the kind of change?

ES So that brings a lot of challenges and what you’ll often hear is people in organisations saying, “Oh people don’t like change”, and by and large there’s some truth to that, but when it’s enforced change under these types of circumstances it absolutely blows my mind how people respond to that. It’s completely different and felt a wee bit chaotic at the beginning when we were kind of finding our feet, but actually I have to say the creativity, the resourcefulness, the resilience and the general will to engage from people has been exceptional. So for my part from an organisational point of view, we’ve tried to make sure that we issue a communication to staff probably twice a week with as much information as we can. We have a closed Facebook group. We have different communications but our learning disability services have continued to deliver support to people online. They’ve been doing different classes online. Some of the staff have been doing stuff from home around cooking. So for example, if you’ve got five or six people in one group who were really, really getting into cooking and haven’t been able to do that now, they can still log into Lindsay’s cookery thing from her own kitchen and engage with that. So the staff and the people that we support have been engaging on social media in a way that was never the case before. People have been doing songs, dancing. One of our members of staff has been doing history walks around different areas, and people can log in and join in on that remotely. The other thing we’ve been doing is our carer centres have had to physically close but all of the support to carers has continued by phone. So the workers are at home but they’re putting in the same amount of hours really. So I would say actually under the circumstances people are doing really well, and I hope that’s a combination of us trying to do our bit, but people just doing what people do, which is we’ll have to shift here, we’ll have to do something a bit different, but the people that we support are the priority so how do we make sure we stay engaged and make sure everybody’s okay. I have to say, most of the individuals that we support that have learning difficulties, their relationship by and large is with the whole family, not just with that person. So in Glasgow in particular we work with a lot of very young people, and so their families are really part of that whole planning things and getting it right for people. So it’s been important to keep in touch with all of them, and that’s been great. I can say with some confidence people are okay. It’s hard but my fear was if we lose momentum how quickly can we remobilise when this is all over. So let’s not lose momentum. Let’s keep in touch, let’s keep the conversations going, let’s do this, let’s see faces.

MD Mmmhmm.

ES And genuinely I think that’s really helping. So people don’t want this but they’re doing their absolute best and I’m extremely grateful and very, very proud of them.

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