Transcript: New Routes Home

A campaign supporting people with disabilities to have their own home

Podcast Episode: New Routes Home

Category: Disability 



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.

Michael: On this podcast, we hear about a new campaign called New Routes Home. It is a campaign for the rights for all people with disabilities to have their say in where they want to live and who they live with. So we spoke with Alastair Minty.

So Alastair, first of all tell us a bit about the New Routes Home.

Alastair: Yeah, so New Routes Home is kind of … it’s kind of like a movement – it’s a collaboration of different people who are interested in not just complaining about how bad things are for some people who are either stuck in hospital because of their disability and because they can’t find somebody to support them, or either an out of area placement, or they’re at risk of losing their tenancy because folk are struggling. So it’s any of these real situations that I guess the Coming Home Report was written a few years ago to take some action on. But I guess there’s a few of us have still seen that this is still a problem, and we wanted to not just say “let’s get it sorted”, but actually say “well what’s missing, and how can we kind of work together to do something about it”.

Michael: So why was it important for you to kind of like take on the kind of the work of the New Routes Home?

Alastair: So for me, I guess … like I say, there’d been a few of us that had met over the last few years, mulling over different ways that we could approach it. And I guess we just saw an opportunity to kind of give it a name and give it a sense of identity, and then put it out there so everybody could hopefully find a way to engage with us – to either ask us questions or to offer a bit of their experience or their skills, to help us to reach out to people who were saying “oh we don’t have the knowledge or skills, or the available services for folk” – so that we could kind of match people up. So for me it’s, I guess, personally it’s all about Human Rights. A lot of my work has always been about – how can we not just describe it, what’s happening – but how can we actually, you know, make a difference, how can we move it forward. So personally, I guess I’m embarrassed that in 2022, after 35 years in Health and Social Care, and being involved in the hospital closures, I am still embarrassed that still so many people are left behind. There’s a lot of people out, living their lives in the community, but still not enough.

Michael: Yeah, you mentioned the word ‘embarrassed’, because it would be a perfect world … or maybe it wouldn’t be a perfect world if you weren’t doing this kind of work, and everybody was kind of equal, if you see what I mean?

Alastair: Yeah, I mean I guess the mindset that I have is about ‘let’s make it happen’, you know, it’s about ‘let’s understand what the barriers are – and not just make excuses and write reports describing the problem – but actually let’s get in about it and make a difference’. So that’s the thing for me, is for us to really identify that equality isn’t there, that we’ve got lovely legislation, we’ve got a lot of really hard working people across the country trying to make a difference, but it’s still … they’re still often getting tripped up. I come across a lot of fear – people are worried about getting things wrong, especially when things are difficult for people. And my aim with all of this is to help … not just criticise people … but it’s about walking alongside folk and saying “look here’s some folk who can help you with the solutions and share some of the risk, some of the responsibility”. So I’m always about getting the sleeves rolled up and heading towards that kind of equality I guess.

Michael: I’ve kind of been to one of your New Routes Home, and it’s been a busy meeting and stuff. So just tell us how it all kind of works, and also how does people know about the New Routes Home.

Alastair: What we are is, it’s a mix of interested people. So it’s a mix of people who are … they can be individuals and families themselves who are facing this situation, they can be health and social care providers who are struggling to place somebody who are worried that they don’t have the skills to support somebody if they’re situation is breaking down. It could be a provider that’s looking for a bit of extra help – and any of these people also who can offer their skills, their insight, etc. So we have kind of two parts to our membership and our goals. So we’ve got our general bit which says, you know, “join up and help support us to get this message out there”. And the only thing that we’re really asking for there is “have a think about what that actually means”. Because a lot of people sign up to stuff with good intentions, but we’re actually saying “if you see something, like somebody’s potentially going to have problems with their tenancy, or if somebody is approaching you, what are you going to actively do to try and support either raising it with somebody else, or offering a bit of support, or offering a connection – something like that”. So it’s not just empty words, any of this stuff. So that’s one level.

So for example somebody who has got experience of, say their son managing independently when they were, for example, on the verge of going to a much more restrictive service out of area. That’s a skill, that’s a resource that we want, because we want people to have the confidence to say “look, this stuff isn’t a pipe dream – it’s actually fairly straightforward, but it does require a lot of really detailed work”. So that’s at the kind of general membership level. And then the second level is kind of skills matching people who have the practical experience of managing people back into the community, or helping people to stop being away from their home, I guess. So that’s kind of the two bits. And in terms of how folk find it, we’ve set up a website. We have monthly meetings and everybody’s welcome. So yeah, that’s generally what it is and how you can get in touch with us.

Michael: Obviously I’m not going to ask you disclose kind of personal information about these kind of meetings, because I know that they’re kind of private and kind of like confidential as well, but can you just give us a wee overview about what people come to the meetings to kind of like discuss, but also to have complaints in a way as well?

Alastair: Yes, I mean a lot of the time, how I describe it is, people are getting stuck – for whatever reason – they’re finding that because it’s either fear of things going wrong, especially when things are getting worse, not better, and people are saying “well I really don’t know how to go forward”, or they can’t get the access to the services, whatever it is. I do feel that this is a good place to unstick. So some of this is about building trust with one another. I mean this is very difficult stuff, and historically part of the reason that people get caught up in this constant, you know, being stuck in hospital, is because people are worried about “what if it was wrong if we try something different”. So a lot of the discussion is split between the individual – so somebody might say “I’m in this situation – this is what I’ve tried – this is what I think is important – and this is where I’ve got stuck”. And we can help to work through a bit … we can’t work through loads of individual cases, so we just have to pick like one or two as examples, and then kind of, as well as working in detail with those one or two, the plan is then to see what are the overall messages from those situations, and say “so how could we explain that better, more widely?”

So, for example, we’ve got that bit about availability of support services, for example, and housing providers – and one of the things we’re going to talk about in tomorrow’s session is going to be “is there a way that we can help people to just list the things that people could approach you for?” So things that might not necessarily be already on your website, but would you be willing, for example, to develop a bespoke service within this local area in conjunction with somebody else, according to what kind of parameters, and who would we contact in that organisation to discuss that? Because sometimes folk will phone organisations and they’ll just get the front desk and they won’t know. So just trying to make those connections. So on the individual level and then say “look, this is building up evidence – it can identify wider change”. The plan is for that confidence in that approach I guess.

Michael: And I must say, it might feel a bit kind of annoying for you, in a way, because like you know that you want to reach like the whole of Scotland – because we know that there’s people who have gone kind of like institutional settings, whether that’s in a shared house or in a hospital. But it’s quite difficult to kind of like reach these kinds of families. So you’re just maybe depending on people coming to you.

Alastair: That’s it, well we do … I mean we’ve done a quick social media campaign round about one particular aspect which was around an out of area placement which was quite poor, and just really highlighting the fact that in Scotland in 2022, that sending somebody to England to a place that scored very badly – is that really all we can offer? And I’m very clear that my embarrassment is not for myself really, it’s … well I suppose even ‘embarrassment’ is not … I feel like we’ve failed so many parts of … you know, the system as a whole should be able to offer a much greater level of options, much more quickly, and that I guess the feeling particularly is that people keep going on about research. And yes, research is important, but my viewpoint is that research is only important if somebody does something with it.

And we have known really since the 90’s when we really got into the person-centred planning stuff, that the principles are all there, and it’s proven – if you listen to people, listen to the person, listen to the families, and really build any responses round about the things that matter to the person – you don’t go far wrong. And usually when we start picking apart why somebody’s life was falling apart now, it’s not that complicated to start spotting where, you know, the service is working to its own needs – the person is not having their needs met – and that’s where the frustration is coming through. So that’s the thing for me, is that this is proven it works. And lots of people argue, but not enough for it to be universally accepted. It feels a bit like having a discussion with flat-earthers, you know what I mean? It’s like we know the earth is round … or climate change deniers, you know? It just feels like – how can it still be a thing about … “oh well, but I don’t think they’ll manage”. Well how about we try using the stuff that matters to the person, and then you can decide, rather than just saying “well I don’t think we can try yet until he behaves differently”. But how is he going to behave differently when you’re not giving him the life he wants, he needs? So we can get caught in that catch 22 I guess.

Michael: And I suppose it’s all about raising awareness, but I’m like a big believer about not only raising awareness, but going into schools and speaking to schools about people with disabilities, and kind of be like open and honest with them, and upfront. Because sometimes we kind of shy away from it.

Alastair: Aye, that’s absolutely true. I think it’s important that people’s expectations are raised in terms of what they should be able to expect from services, from individuals, everybody … I think it’s really super-important. So what I would really like to see is a stronger push for that sort of stuff. I mean the kind of … we’ve got things like Young Scotland’s Got Talent, that VIAS has done about raising folk’s expectations about employment, for example, for young people with disabilities. And I think that similarly we should be doing other types of things like that, round about people’s expectations for support, to make sure that that happens. So yeah, I think getting out into schools, doing roadshows, doing accessible conferences – and sometimes, you know, linking that in with fun. I mean we’re going to be planning a live music event, hopefully in September, in the northeast of Scotland as part of our ‘Stay Up Late’ campaign. So one of the things we’ve spoken about is could we have a bit of a conference thing that goes on beforehand, so we’ve got the serious stuff and the fun stuff. So see if we can do a wee ‘New Routes Home’ session as part of that – who knows!

Michael: And in terms of like the families that come to the meetings – I know they kind of like drop in and out of the meetings – but how many families do you work with, kind of on an individual basis, but comes along … are the meetings just to hear people’s concerns, but also to meet new people that’s actually going through the same barriers as that particular family as well?

Alastair: Yes, so there’s an element of peer support there, of hearing folks who are (a) struggling with, you know, currently with what the other person is dealing with, or and as well to talk through how we’re working through it with somebody. So I’ve had contact with I think with three families, and offered some general discussion – but in terms of detailed work, to show how it can change – I guess I’m doing that with one family really. And part of the feedback within the New Routes Home is that kind of sharing of examples of where we’re getting stuck, what we’re trying, why we’re trying that and what else we’ve tried, and what we hope the next step to be. So again we can provide that sort of framework so other people can say “this is what I think works and doesn’t work”.

So for example, one of the things that I see a lot is parents and other relatives who are trying to get this done, just getting exhausted, just, you know putting so much effort and emotional energy into stuff and firing out a lot of emails. And one of the things I try and do is simplify that – try and get the key messages and put out just a few things, but give them really clear deadlines. And then show people that we’re not just playing at this – we don’t just go away. Once we’ve done it, once we’ve said we’re going to do something, then we do – we go to them and we make the offer about the support, and if that happens, that’s lovely, but if it doesn’t, we move onto formal methods and we follow up absolutely. And so that over a period of time, people start saying “oh I’m going to have to take this seriously”, because so often people feel like they’ve been ignored, they’re exhausted, that kind of stuff. So it’s just standing alongside individuals and families and making them feel like they’re not alone. That’s the plan.

Michael: Okay, thanks Alastair.

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