Podcast: The history and the future of Small Supports, with Simon Duffy, Citizen Network
Talking Inclusion Ep.20: This Foundations series from the Small Supports programme features conversations with guests about what matters: inclusion, community, change, and rights. In the first instalment of the series, Nic Crosby speaks with Simon Duffy from the Citizen Network about the history and future of the Small Supports programme.

Nic Crosby, Host:
So welcome along to our first podcast.
This is one of a series that we're going to be publishing from the Small Supports programme at NDTi this autumn.
So it is fitting that we're starting where Small Supports started.
They weren't known as Small Supports back then but it's really great to have Simon Duffy join us and share a little about the roots of what would what we now call Small Supports.

Simon, along with a few fellow radicals, John Darwin, Paul Francis Brown, Sam Smith, Doreen Kelly to name a few, set out to close down the Lennox Castle long stay institution for people with learning disabilities back in the 1990's. The work to close Lennox Castle could be said to be one of those moments where a number of people and things come together and prove transformational.

Today we're going to speak about the solutions developed to support people with complicated and very individual support needs.
More widely though, closing Lenox Castles burned all sorts of developments that now find their way into policy and across the UK; self-directed support for example, is well - to my knowledge has its roots in the closure of Lenox Castle.

Welcome Simon.

Simon Duffy, Guest:
Hi Nick, lovely to see you Why back to the future?

Nic Crosby, Host:
Well, back to the future Small Supports is the current, but we're looking back at their origin.
Think about the lessons that we've learned since then and then starting maybe to look ahead with so much attention be put on local communities, neighbourhoods and supporting local communities to take more control over the support and care for their own people.
Small Supports certainly in my eyes and hopefully in Simon's as well - because then we can agree we'll have a future as well.

But let's start with a few 'looking back' questions, Simon.

Nic Crosby, Host:
So, can you just share the story around how Inclusion Glasgow grew from the closure process around Lenox Castle?

Simon Duffy, Guest:
Yeah, sure, Nic. And you know, whenever anybody says where did something start, immediately you think, Oh yeah. But before that there was this thing. And so I mean, for me, there was a day where I'd been in the States for a year doing something called a Hartness Fellowship.
I arrived in Scotland with my wife who had family there, and I was looking for a job and I turned up at Lenox Castle Hospital and there was and another really important leader, Judy Murray, who social care and health leads to the hospital closure programme.
And I said, "oh, I really want a job helping to close hospitals."
That was kind of what in my head would be the logical thing for me to do next.
And, John said, well, sorry Simon, you've missed all those jobs.
But what we really need is a service provider to actually support people when they got out.
And that led through a series of months to me developing the business case for what became Inclusion Glasgow, which was initially designed as a kind of brokerage type organisation.
So the idea was more that we were going to create support in the community.
And then as we started to get people out, then Inclusion Glasgow really ended up being just a new type of support provider.
But do you mind, Nic, if I say a little bit about why like the Small Supports idea in a way was already in my head then for reasons that go back further in time and some of this can't be divorced from.
This year we lost for me, the great hero of all of this movement John O'Brien.
John O'Brien, if people don't know him, Great American advocate, thinker, really defined the ideas behind inclusion. And I was lucky enough in 1992 to go to Madison, WI, which was one of the places that had really listened to John for a long time, right through from the late 70s, right through the 80s.
And it had developed models that I think we would recognise as Small Supports.
Then in 1980s, partnerships between community organisations, the state government and the county government, which is kind of, yeah, well, let's not get into the complexities of American systems.
But you know, together they'd said, well, what we do need is to replace the institutions is we need small human sized organisations.
There's particularly one organisation called Options. I think it was options for community living.
But options is how it is now, you know, and, and going there in 1992 and having already heard the kind of values of inclusion from John and from it was just so inspiring.
Nic, you know, So you just met people with learning disabilities who'd been in the institutions, who were living their own lives in exactly the way you would hope.
And people were able to articulate what it was all about in a way that I wasn't seeing back in at the time.
I was working in London with a really good organisation called Southwark Consortium.
But the level of empowerment, flexibility, community connection that I was seeing in Madison seemed to me the goal.
And so I went back to London and started trying to do those kind of things. And actually in London at that time, we were Rob Gregg, who went on to run the Violin People programme and the NDTR.
He'd overseen a kind of strategy, walked away actually before it was all implemented.
But the strategy was to create a Commission organisation in the voluntary sector, which is also consortium, was all stuff that's now kind of long forgotten but very interesting.
Like the money would be managed by us and we'd be supporting the development of small community organisations. And that was the model we were doing.
So we created a handful of organisations in Southwark actually at that time.
Like in about 1996, the local authority took control and said no, we're not allowing this kind of approach.
We need a market. How toxic all this was. We need a market. And so we need to be in control.
We can't have Southern Consortium having all this power and immediately all the small organisations scurried back into Southern Consortium there by killing the market. And then that organisation became Choice Support, which has gone on to have a very positive role in particularly in England.

But all of that baggage was in that initial conversation, in all that work we did in London.
All of those inspirations from Madison were in those kind of conversations with John and Julie in in Scotland.
Nic Crosby, Host:
I think there's something really, really strong, especially if I'm talking to local commissioners about small supports, say, explaining the story about their roots and the length of time that's gone.
You know, that some of them have been around that are our partners C Change, which grew from inclusion Glasgow, for example.
You know, it's a very different story from kind of presenting something, oh, this is a new idea that we came up with a couple of years ago.

Nic Crosby, Host:
So I think do you want to just say a bit more about why small?
I mean, you also use the phrase human sized.

Simon Duffy, Guest:
Yeah. So I think that I think there were two things at least in my head that seemed really important about small.
I mean, I'm sure there are many others, but one was, I mean, in a way we didn't really, this was stronger in Madison than we have achieved in Glasgow. The paradox in Glasgow was that we were supporting people at the institution and we said you can live wherever you want to live.
So of course, we didn't get the value that you get if the small was actually rooted in a place to be frank. So that part of small which we actually did a bit better in London, that bit of small inclusion Glasgow didn't get.
But the other bit that was really valuable.
And to me, pretty fundamental from my experiences of the way in which systems and services are working is basically it's about quality, it's about the relationships that allow you to make sure things are going well.

I think some people actually can do better than me, but in my head I couldn't imagine understanding what's going on for more than about 30-40, fifty people. And I don't want to turn that into some kind of hard and fast rule.
But I think at some level, if your job is to make sure everything's going well, then don't build yourself an infrastructure that means you can't possibly answer that question.
The only way of answering that question at a certain scale is either actually a kind of very different management structure, which I think is also is also possible, or bureaucracy, which is usually where people go.
And once you get bureaucracy, you actually undo a lot of the good work that you're starting to do.

And so, it's that that I'm kind of intrigued by small, large networked, all of these things I think are there's perhaps a lot of wriggle room in them. But I do think you can't like somebody's got that kind of care and keep their eye and have a relationship at some, which is just the people who care immediately around people, which actually is where all the goodness is really going on.
But you still need this secondary kind of check and balance.
And when that's bureaucracy, CQC regulations, "oh, we've got a policy for that". Quickly it starts dying.

Nic Crosby, Host:
I think the word that you were using and that's the word that we champion and champion, and champion when we're talking about Small Supports now is relationships.

And it's the fact that we can talk about how Sam knows every person that's supported by C Change or I can talk about Dave up at Positive Support for You in Middlesbrough. He knows every single person.
I was in Leeds meeting the two new Small Supports organisations there. And, and I love the fact that they were doing exactly the same as what Doreen down in Plymouth or Sam in Glasgow or Dave in Middlesbrough were doing.
They do the same thing.
So, one of these lasting things is the director or the boss is the first person to meet the person who's moving out. So from the moment of first contact, the relationship is there and that's when you end up with an organisation where that's not happening, where the director doesn't know the people, their organisation is supporting, then there's a remove and the centrality of relationships changes.
And it's not the kind of relationships that we will be champion as Small Supports.

Simon Duffy, Guest:
Yeah, I think that's very true.

Nic Crosby, Host:
I so I actually met and interviewed somebody you'll know Huey McIntyre a few years ago and I had some help from John with translation because even though I've lived in Glasgow, my translation skills weren't that good.
But I'm just interested in you sharing maybe some memories of stories about the first few people that you supported at Inclusion Glasgow and maybe a bit about what you learnt or what it meant for them.

Simon Duffy, Guest:
Well, yeah, the very first family we supported, I do tell the story quite often because it was, it was very important to my learning and to everything that happened.
This actually wasn't the name. I just call them the Smith family because to protect their privacy.
But the Smith family, were in a very difficult place.
They had two sons, both with mucopolysaccharidosis which is a horrible chromosomal condition which leads to early death, progressive disability, challenging behaviour.
But I think just the behaviour becomes part of the condition and they were living in a 2 bedroom flat where they had another son.
So through a family of 5/2 with incredibly complex conditions, living in a 2 bedroom flat in Glasgow, appallingly supported by the local authority and appalling relationship with the local authority.
And they reached this breaking point and their sons ended up in actually a kind of modernised version of Lennox Castle Hospital.
Not the hospital, but it's kind of a wing of it that was in in Glasgow, closer to the central Glasgow.
And we were the, we were kind of set the challenge of getting these young men out of the institution.
I do remember this vividly, Nic, you know, the, I think Julie Murray, who was, who was then, she, she was my ally in making this happen because it was a health service funded support package.
But you know, talking to the social workers and the nurses and everybody involved, they're so dismissive, so misunderstanding of what was possible, so dismissive of the family.
And I spent two or three months just going, can I talk to the family? "Oh, you don't want to do that."
"You'll have to set up two different units for the boys and it'll be madly expensive and you can't do it."

People have said that they can't do these things - and I said "but can I just talk to the family?"
So, and eventually I managed to talk to the family.
And then you hear the story from their point of view and you realise how badly they've been treated.
You realise how severe the crisis is in their lives and then, you know, in, in a matter of a few days working with them.
And at this point, to be frank, conclusion, Glasgow was me and a cheque book.
I had no staff, I had no structures, nothing.
And so of course that makes you very creative. But you know, listening to them, it was clear that the family needed to be together, but they needed to be together in a completely physically different environment.
And they and they needed support that they had real control over, people they trusted because of stuff that had happened in the past with statutory services.
And in fact, they ended up, we employed for them family members, and we ended up helping them move house, sell their house and buy a whole new 5 bedroom house quite close to where they came from, close to all their family and friends. And the boys moved back there.
At each boy's support package was 1/3 of the cost of the support package in the statutory service, 1/6 of the predicted cost of individualised package.
Of course, that's because love, family, natural support, the right physical environment, makes all the difference in the world, but we just can't seem to pay attention to these things.
So I think that that was very important to everything that Inclusion Glasgow did.
The learning that you really needed to pay attention to, to the real story.
You needed to get alongside people and their families and really understand the dynamics and then work out with them what the best kind of support would look like.
Not all of our support packages by long, I mean we're supporting people with no family, no friends, no relationships to come out the institution as well.
And in which case you had to start with like the two Margarets were both in like Francis and I often reflect on this was a key moment for us because this is not a situation where you could have act in any sense like a broker or facilitator or just you had to employ some folk and you had to employ really good folk.
And you had to make it your best calculation because both Margaret's didn't use words, didn't have allies, didn't have advocates use their best calculation of what relationship is going to work for them.

So that was like, if you like it, the other extreme.
But then again, you know, we were we were supporting both Margaret's to leave institutions into a flat of their own with their own support team recruited for, designed with around them.
Now they were coming out at costing a little bit more than the average cost of people in the institutions, which was about 40,000 a year.
We were and these are all 1996 prices.
So these are all imprinted in my mind.
You know, I can remember lots of details of this.
But yeah, so somewhere and then there were all sorts of things in between those two kind of extremes, you know, but lots of it was about really paying attention to what kind of life people wanted, what kind of assets people had in their lives, who they had in their lives.
Often people who the system would just dismiss as not being relevant actually played an enormous part.
And we also designed a lot of these things around this concept of I now regret the terminology individual service fund.

But you know, you sometimes invent this bogus jargon and just to kind of make the system feel like you've done something important.
So you so, you know, people, people had what Jimmy and Michael from Dimensions now call 'my support money.'
And that was a thing like 'the money belongs to the person guys' that was and like you say, this is a conversation I would have with people as they left the institution.
It was also a conversation you'd have with the support team as you're creating.
This is Jimmy's money.
This is Huey's money.
And of course that changes the kind of culture and people start to, you know, I mean, I think we had the odd Scallywag staff member very occasionally.
I remember one example and I'm sure there were more than other.
But generally people who are joining us on, you know, ordinary working class Glaswegians, honest, hardworking, committed, creative, fantastic folk, and the combination of bring together, you know, real people with real lived experience of their community, good values, with people with disabilities who need advocates and allies in the community.
It was very rewarding.

Nic Crosby, Host:
Yeah, I think it goes back to what we were talking about relationships, isn't it? They're real relationships.
It's not because you can do a certain of hours on a Friday night.
It's, you know, when I'm talking about it, it's like that you all support Newcastle United because who else would you support?
But it's that sort of thing.
It's there's something real in in between people that brings people together.
Nic Crosby, Host:
Anything that stands out as why it worked, you know, not just in terms of 'it worked because we listened', which is paramount, but the other things in and around supporting?
Inclusion Glasgow, yourself and support people what made for success?

Simon Duffy, Guest:
I was chatting to Francis recently.
I was like Francis Brown and John Dalrymple do their own podcast, 'divisions podcast.'
And you know, I realised actually it was stupidly how much Francis already knew when she came to work for me.
And it's a bit embarrassing.
So there were a lot of skills in the room, some, some of which were just, I didn't even really understand were in the room.
But Francis said I brought, which is probably true, which is probably is a slightly madding gift was kind of philosophical logic.
So for me, like the human rights issues were just like fundamental frameworks.
So when you say right, people, people choose where they live.
People choose where they live with who they live with.
It's their life.
All of those frameworks then became kind of the framework around which the design was done.
So essentially what we did, Nic, which I think remains, you know, now not unique, but still very radical in the current setting.
As we started from human rights, we start from a presumption of citizenship and we and then we worked out how from there, whereas I think most services today start from a service model, even though those service models are actually go back date back to the poor house.
Somehow they've some have been blessed as 'oh, well, that's what you do to people.'
And we just kind of erase that.
So we just said, no, no, that's not what we do.
We support people as citizens, so that that I think that was what I brought, but I didn't you know, I was very, very lucky Nick, you know, like people like Francis Brown just had enormous gifts.
Emma who joined us as a young woman, just enormously skilled.
So I was very pretty lucky in the people who turned up and wanted to join in this mad endeavour as well.
And then as I say, what you do by approaching the problem solving in a way that's respectful of.
So it's not just about listening, it's expecting people's gifts, you know, looking out for those gifts.
And again, that goes back really to John O'Brien and to the philosophy of inclusion.
So again, again, and I think that's where that gets missed a lot.
So, yeah, I kind of kept hold of this pretty firm kind of moral framework rooted in rights.
But even more important than that was what was given, handed on through the inclusion movement, was just the expectation of giftedness.
And that's not just for people with disabilities.
Everybody's gifted and your job is to look out for what that gift is.

Nic Crosby, Host:
When I'm planning with folk, it's I know that there's going to be Golden Nuggets coming out and I, call it the gifts, the strengths there, there.
But I'm looking for those Golden Nuggets because I know they're going to come.
I guess listen for us in the Small Supports programme now it's everything is around Article 19 and the, the right to independent living to be included.
So very much the same kind of core of human rights and Sam at C Change will challenge me if I ever deviate from that.
But then she was part of the same kind of community of people taking on Lennox Castle.
So it's the roots.
Looking more ahead, but thinking about all those strengths which you know, you can see looking back, we can see in the current mindset around 'small is good, human size is good.'
The role of Small Supports, that kind of focus on good, local, person-centred support, how does that feature of, you know, looking current day or looking ahead?

Simon Duffy, Guest:
So I suppose, I mean, I might be wrong.
My kind of all in now make on one assumption. And that assumption is that the only sustainable future for care. And I think I've gone back to using the word care, which for reasons we can explore if you like, but I think let's say care, is it is through the neighbourhood. So actually, so this is, this is a distinct kind of shape.
It's a real thing.
Like in Sheffield recently we went through an exercise with Citizens to Define.
There was no map of neighbourhoods in Sheffield, so we got Citizens to Define in and we discovered 147 distinct neighbourhoods, which is also intriguingly a full break in snooker or whatever.
Nic Crosby, Host:
The Crucible.

Simon Duffy, Guest:
Yeah.
So that's curious.
That was purely accidental, but it's probably God smiling upon our work.

So I think that what I've gone through doing the work in in Glasgow, through developing the self-directed support architecture, that was then kind of applied or misapplied in England and Scotland has let.
And then kind of moving out of that world, not by my choice, but finding myself having to discover new things.
I suppose I really ended up exploring both the power of women supporting other women and then people with mental health problems supporting the other people with other mental health problems.
And then we saw what happened during COVID and, and all of this leads me back to like, if you, there is no sustainable way of us caring for each other, which is our basic kind of moral nature.
Also to our best, caring for each other and caring for the planet, things we really need to do that doesn't require us to work through a human scale place-based structure, called a neighbourhood or in the country you'd call it a village.
And maybe there's other language, but you know what I mean?
Like, and the thing about, I mean, and this is pretty well attested actually by global work around community development, but it's also pretty common, sensical.
You know, you when I was doing some work in Barnsley a few years ago, for the council, looking at the civic reforms that introduced the council leader, quite an inspiring, slightly frightening guy called Steve Houghton.
He put it like this.

He said, you know, like in 2010 when austerity turned up, he realised, you know, Barnsley were in big trouble.
Central governments basically cut local government funding by 40% and it's and it's the it's it provides 70/80% of funding to local governments.
So the cuts are just beyond anything we've ever seen in the modern era, after World War 2 again without going down the whole you know, how extraordinary that the Conservative austerity coalition could get away with that.
But they did and it's not stopped.
It's not been reversed.
So care exists since kind of highly financially impoverished environment.
But he said the only way we can get out of this is through, you know, citizens getting involved and they're not going to get involved.
Barnsley's an average size exactly.
Average size, local authority, 250,000 population roughly.
I think they're not going to all turn up at Barnsley's town hall to volunteer.
People will get involved in their own place in the places that they love and have pride in.
And that seems to me entirely correct.
But the logic of it is quite compelling.
And you just think about then what we did do what during COVID, how you know, some people might be running around a city or something trying to help other people, but the most natural, sensible, useful things to do are in your immediate neighbourhood.
And then you look at what self-advocacy groups are doing, Nic, to survive what they're doing is turning themselves into community development organisations.
It's amazing to see how people with disabilities, actually, it doesn't take much for them suddenly to realise they've got a lot of power, capacity, strength.
So and really working with the peer support group in Doncaster PFG, that's been the most biggest impact on my life.
And they just see like 3,500 thousand people who have over 15 years just transformed their lives, transformed their communities, are transforming public services, pushing back and reforming their services.

And that started with Kelly Hicks going well, what are we going to do about that?
Well, you can only do these things properly and sustainably at a humans go.
Sorry, that was a, was a kind of baroque response to your question, but that's where my head is.

Nic Crosby, Host:
Yeah, but it's that core. I wonder during COVID, I joined up with the Plymouth Octopus group.
I think, you know, Matt and we were, I was part of the kind of supporting the different neighbourhoods across Plymouth and, it was, it was a new, new world to me.
I spent my world working around people with really complicated needs.
Don't really have roots in neighbourhoods, you know that because that's not where my brains been.
But it was amazing watching the, the neighbourhoods really kind of stand up, you know, and support their people.
And I love this, this feeling of, of hearing people caring for their own people.
And that that's stuck with me now thinking about Small Supports.
We're, you know, talking to guys in London.
Can we do something based in the community?
What happens if we put this idea in front of you and you guys take control and do it?
Or we're trying to work out how to make it work around people with dementia, particularly where the dementia has progressed to the point where they are facing residential care.
It's, there's a feeling around, there's, there's, something about, and it's a bit that really excites me.
There's something about how this can sit in the Small Supports really fit within an appreciation of neighbourhoods.
But because there's a group of people within those neighbourhoods, whether the people living on the street or the people with dementia or the people with learning disabilities and autism have been sent off to the other end of the country where these organisations are going to be crucial.
And they don't necessarily exist except when they're provided over very big areas.
And then you lose that relationship thing.

Simon Duffy, Guest:
Yeah, I think this is it's a very interesting situation we're in as well.
So I think the spirit of Small Supports is going to be critical to the future.
I think what shape things take is very unclear, if we're honest, like it and, and there's a lot of work to be done to just begin to turn the, the underlying problems go back to, I think the market reforms that came out of the 1980s.
Small Supports is brilliant because like we, I actually, I often am very naive, right. So I actually thought that what we do in Glasgow was obviously, it worked so well for people.
We even managed to create several other organisations out of what we did.
I just thought that would grow.
So I, I left all of that thinking, 'Oh that a little be fantastic, won't it?'
I mean, it stopped, it didn't drive.
And then same happened with the self-directed support reforms.
You know, one of the key elements was this idea that everybody should have their own budget.
And that, you know, I knew that if people have their own budget and they have flexibility and control, then it creates such great enormous opportunities, not just for people, but for support providers to do a better job.
Did support providers want to rush and take it up?
No. Did commissioners want to enable them to do that?
No.

And in fact, that whole part of the whole self-directed support story almost stopped dead.
And it's only thanks to people like Chris Watson, who's fought for that, that commissioners have allowed some growth in that.
And now we've got, you know, a good number of local authorities who are at least playing with that.
But it's like, it's a, it was a fundamental part of what was supposedly government policy.
And it was just killed by a mixture of factors.
I won't rehearse here without getting too angry and distracted.
So now we, so we're now in this interesting place where I think that the questions about what the future for care are looming very, very large change of government, this Casey Commission, who knows?
I think that's all very poorly framed.
But the economic crisis, the sense of crisis within the professional systems itself, the desire for something better, the experience of what can be better the environmental crisis, I think these are all creating perfect conditions for a very big change.
That's what I believe.
And I think that you know, then how we how we find a way of sharing the necessary skills in the way that you guys have been doing and growing the right kind of supporting infrastructure remains part of the work ahead of us.
But the, you know, what you've been doing and how you've managed to take that forward represents one of the truly hopeful seeds of change for, I think what is going to have to be a much bigger, more radical period of change ahead of us.

Nic Crosby, Host:
Yeah. Radical as opposed to easy.
Yeah, Thank you, Simon.
I think we could probably talk for hours and share a good few memories as well.
I remember the story that you shared about those two young guys because it was the very first time I met you.
It was in 2001.
You came to a Bristol Circles Network conference and it was the first time I'd ever come out of Plymouth and gone to a big conference, but I remember that story.

We will share contact details, websites.
Do you just want to say very briefly the a little bit about the citizen network so people kind of yeah, can find out more.

Simon Duffy, Guest:
Thanks, Nic.
So we set up, it's only changed its name since there's a network a few years ago, but actually it started in 2009.
It's basically kind of alternative think tank and social movement.
So for the last 15 years we've been publishing Hopeful Radical, based in real experiences, ideas and models and practises that can help transform the world.
And we have 6,500 thousand members from around the world.
We've got groups, over 300 groups who've joined from around the world as well.
We're trying to network citizens who care about citizenship, I guess, and citizenship for us means everybody having equal rights, but also a shared responsibility to make the world a better place.
And that's the only sustainable way we can change the world.