00;00;10;05 - 00;00;49;12
Janet Stewart
Welcome to Impact the Conversation, a podcast of the University of Minnesota's Institute on Community Integration. It brings you strategies and stories advancing the inclusion of people with disabilities. Our guests are the authors of impact, our long running magazine that bridges the research to practice gap with professional and personal reflections on what matters most in disability equity today. I'm your host, Janet Stewart.
00;00;49;15 - 00;00;59;23
Janet Stewart
The new impact issue focuses on self-direction. And today we're talking with Simon Duffy, who has been involved with several self-direction programs around the world.
00;00;59;25 - 00;01;34;07
Simon Duffy
Thanks, Janet. So my name is Simon Duffy. My work, with people with intellectual disabilities and in, in England, actually the phrase we use is learning disabilities. And it's actually vary around the world. So I have to keep sometimes adjusting, but my work with folk is started in, nineteen ninety, in London, and my, I hesitate to use the word career because I don't really think about it as a career.
00;01;34;09 - 00;01;58;05
Simon Duffy
My vocation or my journey has been, yeah, unusual, probably because, I'm just I'm still working with people with intellectual disabilities, and I'm just off a call with my friend Wendy with whom I wrote, this book called Everyday Citizenship. And we are currently in a complaints process with her local authority, which is also about personal budget.
00;01;58;05 - 00;02;24;27
Simon Duffy
So we could talk about all of that and self-direction. And even I'm still involved in all of that. But, yeah, roughly speaking, my career's had maybe three main chapters. So the early work was really working alongside people who either had left institutions or helping people leave institutions. And we designed a very kind of a new kind of organization.
00;02;24;27 - 00;02;52;12
Simon Duffy
It was called Inclusion Glasgow. Strangely, Patty Scot, who created a kind of very similar organization in New England at the same time, a new Jersey, rather, in nineteen ninety six, we were doing exactly the same thing, which was basically getting people out of institutional environments, one person at a time, designing everything around the individual, including giving people as much control as possible over budgets.
00;02;52;14 - 00;03;16;25
Simon Duffy
But also policies, procedures, staffing, housing, everything. Just like what what what makes it possible for somebody to lead a really good life? You have to listen to that. So that's a big that was the first chapter and probably the chapter in which I did most of the learning, really. And then the second chapter for me was probably began in about two, well, about maybe two thousand.
00;03;16;25 - 00;03;48;23
Simon Duffy
I, I ended up leading for, about ten years. The work to introduce again, another jargon here is kind of a bit similar to your jargon, but it was we start talking about self-directed support as the kind of system for giving people control, the system of funding and social work and all of this systemic things you need to do to try and enable people to have, lives of citizenship.
00;03;48;26 - 00;04;09;26
Simon Duffy
And we talked about personal budgets rather than I think in America it's more typically been individualized funding or some work like that. So I kind of led the design of that a little bit. Inspired by things I'd learned from the USA. I'd been to Wisconsin, I had I have many friends in the US. I lived in, Colorado for a year.
00;04;09;26 - 00;04;49;05
Simon Duffy
In 94 with my wife is something called a Harkness Fellow. So it's inspired by, I think, a lot of the positive developments in the USA. But the UK is very different. And also it was inspired by some of the things I kind of hated about things. So in the US system, but more or less, so, you know, and there is and I continue to work internationally on those issues and we developed, and we have great US partners on this, that in craft, for instance, the self-directed support network, which is a, an attempt to create some kind of global governance around the ideas of self-direction.
00;04;49;08 - 00;05;32;07
Simon Duffy
Yeah. But in two thousand nine, and partly because, without going into all the gory details, you know, actually changing systems can make you quite a lot of enemies. The, the existing system doesn't always appreciate you changing the system. It turns out, which is perhaps not too surprising. So, in two thousand nine, I was saying, I've been doing really this rather different thing, which started off creating a think tank, which we called the center for Welfare Reform, but has really merged into an attempt to kind of create, a movement for citizenship or some kind of strange, I'm not even sure what it is, which is kind of embarrassing, as I'm probably leading it is
00;05;32;07 - 00;06;07;09
Simon Duffy
this thing called Citizen Network. But we paying, I think, in one way, what we're doing is trying to take forward the the inheritance that we've been given from, not just talk about self-direction, but more about inclusion. I think like my the inspirations for everything I've done really are from, some folk from the USA, from Canada. I mean, John O'Brien has been a great ally of thought leadership in, in the UK and a great friend to me.
00;06;07;11 - 00;06;34;06
Simon Duffy
People like Beth Mount, Jack Pierpoint, Marsha Forest. Due to snow, who I met several times, these people, really helped stretch my imagination. But my main focus has been on kind of organizing change, and a lot of my work these days is very focused on. I'm using language that I'm slightly uncomfortable with, but I've chosen it because I think it cuts through, at least in a UK context.
00;06;34;08 - 00;06;49;12
Simon Duffy
Just we calling it neighborhood care. So basically saying we really need to rethink the micro communities in which we live and we need to think about care differently. But actually once you start thinking about care differently, you start thinking about everything differently.
00;06;49;18 - 00;07;17;29
Janet Stewart
You're thinking small. You're thinking, let's drill down into individual pods and communities and figure out how that would all work in a more cohesive context. So can you just say a little bit more about the potential you think self-direction has in the disability community, to then cross into big conversations we have about the planet, etc.?
00;07;18;01 - 00;07;43;22
Simon Duffy
Yes, I think so. And I don't know what it feels like in the USA. Too much on this front. I mean, I think that the self-advocacy movement in the UK was inspired again by things in the US, and I have friends like in People First Wisconsin. So I get some sense of it, but. I think.
00;07;43;24 - 00;07;44;27
Janet Stewart
We've.
00;07;44;27 - 00;08;20;08
Simon Duffy
Gone I think we're in kind of stage three of self-advocacy, if that makes sense, in, in, in the UK. And what I mean by that is, you know, when I started my career, self-advocacy was just not on the agenda. And in the early 90s we, we actually created on the first helped create one of the first self-advocacy groups in Suffolk, which I at that time was working in London for my sins, as a no of not, I think I escaped eventually, but, the, you know, it was it was just establishing itself, just creating some legitimacy for itself.
00;08;20;11 - 00;08;42;21
Simon Duffy
And then and then it starts to get some status and even get some funding and, and, again, the US has been better up, I think, than many countries that recognizing the need for, building and structures of advocacy into every system. I actually think I think that's one of the most inspiring things about the US approach.
00;08;42;21 - 00;09;11;18
Simon Duffy
The UAP, the protection and advocacy, the council side. That's kind of structural elements of amplifying voice. But in the UK we have had versions of that not quite as well established, but and Self-advocates spent time articulating their rights and pushing for their rights and pushing for things that, that are important. But I think it's changing a little bit in a, in a, in a good way.
00;09;11;18 - 00;09;26;09
Simon Duffy
I think that the conversation is shifting and I again, have no idea, but I don't think it's just shifting in the UK, I, I've been to Finland, I work quite line in Spain. I've seen the same in Australia and New Zealand with allies.
00;09;26;12 - 00;09;26;27
Janet Stewart
So what's.
00;09;26;27 - 00;09;49;18
Simon Duffy
Changing station shifting into articulating people's sense of themselves as citizens with capacity, with gifts, with responsibilities? It's not just a rights conversation anymore. It's, I think broadly speaking, it's becoming a much more mature, responsible citizen conversation.
00;09;49;20 - 00;09;50;22
Janet Stewart
So, so I think.
00;09;50;23 - 00;09;56;09
Simon Duffy
That's creating a different feeling for what might be possible.
00;09;56;12 - 00;10;11;11
Janet Stewart
So just maybe to, to say that, to underline that. So are you saying that globally self-advocacy is driving self-direction or is it the other way around.
00;10;11;13 - 00;10;42;10
Simon Duffy
Oh no. Well, no, I suppose I think it's not drugs. So it's, it's, it's having an impact on self-direction. I think that, I wouldn't use the word driving. That implies something much stronger than I think I'm saying. I suppose what I feel is that when I listen to people, people's, the narrative is changed and people's ability to articulate who they are in the world, not only what they're entitled to, but what they can give has changed and improved.
00;10;42;13 - 00;11;27;00
Simon Duffy
And so that changes the whole conversation in an interesting way, I think, and I have no idea how global this is when I'm just talking about my perception. But to to root this and I'm not I'm more talking about the, the way this changes people's interest in community. So, I can I can so in a sense, self-advocacy and self-direction, although they're not quite the same thing, but let's just treat that as kind of the what we've have is been 20 or 30 years where people with intellectual disabilities, but also the allies and also families have started to realize that people have rights and people have voices, and people should be able to
00;11;27;00 - 00;12;06;01
Simon Duffy
self direct and should be able to shape. And so the conversation has shifted again, lots of constraints, lots of barriers, lots of problems. But it's definitely different to how I experienced it 35 years ago. And lots of positive change. But it seems to me that that that change in emphasis is leading to a kind of further maturity in the conversation where people then start to ask themselves, well, what am I doing in the world, particularly a world where it is clearly not working very well?
00;12;06;03 - 00;12;26;08
Simon Duffy
I'll give you a very concrete example of what I mean here. Or maybe that is. Oh, well, we've been working closely with, an organization called Planet Inclusion, which is the major, intellectual disability organization spanning. And we were at a conference and I ran a workshop there. And I am not fluent in Spanish, just to be clear.
00;12;26;08 - 00;13;00;11
Simon Duffy
So it was supported by, but the, the workshop was about neighborhood care, and I asked people to imagine that their neighborhood in Spanish, their barrio, had become surrounded with water, a very real issue, in fact, not just a kind of, little scenario, but, you know, something that the world is having to really face. But we then said, like, so imagine this is your neighborhood and this is your in this neighborhood.
00;13;00;11 - 00;13;22;09
Simon Duffy
And, how do you want it to be? And we set a series of kind of chat questions and challenge. What principles do you want to operate in this neighborhood, and what kind of what kind of spaces do you need to create and rituals do you need to create and actions would you create and roles in Ukraine? I mean, this is I'm at the moment, I'm very focused on like, what are those the right questions to be asking?
00;13;22;09 - 00;13;45;28
Simon Duffy
So I don't know. But lots of interesting answers. But I'm not quite sure. Asking all the right questions to get all the answers we need. And this is a back in hard hat workshop. A lot of people with intellectual disabilities in this workshop, as well as a few families and, some professionals and some government officials, nobody struggled to generate ideas.
00;13;46;00 - 00;14;11;08
Simon Duffy
Nobody didn't get it. Like people got that? Oh, yeah, it's not them. It's us. And the scale changed people's perceptions. And, and the rising water sense creating a a sense that the that there is us that has to kind of grapple with this change that I find it very encouraging and, and there are other things going on.
00;14;11;09 - 00;14;37;27
Simon Duffy
Okay. This is what gives me hope. The main thing people were focused on was taking care of all the people. Two weeks ago in Sheffield, my city, we had something called Fearless City Summit. So we had over four hundred people come to a two day weekend event, some people with disabilities, but it was not, about disability. It's about how do we, the citizens build a model of neighborhood care.
00;14;37;29 - 00;14;52;04
Simon Duffy
There's energy out there for this. Injustice is increasing and environmental catastrophes happening around us. And and care systems are actually breaking down. And the only answer to that is those.
00;14;52;07 - 00;15;22;16
Janet Stewart
Can't remember it was a paper you wrote or, a dissertation. I can't remember the format, but the headline of it was, if if self-direction is so good, why is it so hard? Because that's that's something, that our editors have been wrestling with in some of our articles. You know, we want to celebrate this wonderful system and, and showcase a lot of the highlights and, and celebrate the more independent lives that people are living.
00;15;22;18 - 00;15;42;16
Janet Stewart
But we also want to, you know, very, realistically and provocatively point out that they're we're putting up a lot of roadblocks, that, that, that this community doesn't feel need to be there. So, so what what answer did you find to that question? Why is it so hard?
00;15;42;18 - 00;16;25;12
Simon Duffy
There's not a quick answer to that question, but I think there are some things that you can definitely say. Ed Roberts in Berkeley, it was nineteen sixty five when he got the first bit of individual funding that I've seen cited. So the numbers of people are self directing the number of, governments that have adopted some kind of policy. The numbers of people in those systems has generally been growing and, that the but slowly and with challenges, if you've read the literature around self-direction, there's, there's almost like a constant refrain, which is that, oh, look, if people have flexibility in how they use their funding, the money goes further.
00;16;25;19 - 00;16;56;28
Simon Duffy
People are more creative outcomes are better. And what what does flexibility cost and doesn't cost anything economically does it. So. And so who's got a stake in reducing flexibility. Well the it's the paternalistic self-interest of I don't know whether it's bureaucrats is a factor. But like when the when they're when they've when they're doing these things definitely bureaucrats is maybe the right term.
00;16;57;00 - 00;17;17;04
Simon Duffy
And they may be on on other days lovely social workers or they may be playing some other role in the system, but when they're basically telling people who know better than them how to live their own life, that they can't do something because it's against the rules, then what's operating has got nothing to do with economic rationality. It's people in the system.
00;17;17;04 - 00;17;19;03
Simon Duffy
We don't want to let go of power.
00;17;19;05 - 00;17;47;18
Janet Stewart
What? Just to kind of wrap up, what gives you hope today when we get, like, getting back to self-direction? I, I think, it was, two thousand eighteen that your report came out. You know, we've had a good six years since then. Have you seen some progress? So as you look, into the future a bit in self-direction, is there some hope there?
00;17;47;21 - 00;17;52;20
Janet Stewart
Or is it clouded by elections around the world? I mean, what do you think?
00;17;52;22 - 00;18;27;13
Simon Duffy
Well, I think there are several kind of helpful signs. If I can try and squeeze them together. I mean, I, I've written a lot about some of the mistakes made in Australia around, funding system for disability. But preceding that, what I think of as a terribly bureaucratic system that I have created a campaign of people with disabilities, family members and providers created more pressure than I've ever seen in the world to reform their broken system.
00;18;27;19 - 00;19;01;06
Simon Duffy
And they have I mean, I think it's actually almost well, it's problematic, but they've increased spending on disability supports by about four hundred percent in ten years in Australia. In Australia. Yeah. I mean, Australia's really worth looking at. I think, and I mean the actual details of the system I say I'm highly critical of and I think that they have not done a good job of making the system very well designed for the purposes of self-direction and not very well designed for the purposes of economic sustainability.
00;19;01;06 - 00;19;29;24
Simon Duffy
I think. But they gosh, when you go to Australia, these issues are front page news. And that's because disabled people got organized and made that happen. So that gives me hope. And then they did that by creating a very powerful coalition and by changing the story, going back to solicitor earlier, their campaign was called Every Australian Camps, and they could change the whole disability story into a universal story.
00;19;29;26 - 00;19;52;10
Simon Duffy
And they made people realize that disability was something that could happen to them, and that they needed a system that was fit for purpose for everybody. And they got principles of individualization, self-direction in the kind of in the manifesto and to some degree in the system. Just I think that they unfortunately, the bureaucrats designed the system, not people with disabilities.
00;19;52;12 - 00;20;20;01
Simon Duffy
But so Australia gives me enormous hope. Yeah. My friends in Spain give me hope because I see there is a country where the government and the leading civil society institutions, and this is partially post Covid, grappled with the fact they saw all these deaths in these care homes. They realize these care homes were fit for purpose, and they've developed a very broad vision for deinstitutionalization.
00;20;20;01 - 00;20;49;26
Simon Duffy
That's not just about people with intellectual disabilities. It's about older people. It's about younger people. It's about homelessness. They started to realize that the kind of things that, that you've been thinking about around inclusion and the institutionalization and citizenship that in the states have been certainly part of the conversation for decades. They start to realize that could be the key to unlocking lots of social problems in Spain, in a way I've not seen before.
00;20;49;26 - 00;21;23;03
Simon Duffy
So there are places that have got a much broader vision that's not trapped inside a silo of ideas or mental health or whatever it's actually about. This is a social change we all need to get on board with. And I think Spain's a good example of that. And, so lastly, I would say. I mean, I'm inspired by when I go down the road to my friends in Doncaster, and this is where there are three thousand five hundred people in an organization called People Focus Group, Doncaster.
00;21;23;06 - 00;21;50;23
Simon Duffy
That people with mental health problems, that people with disabilities, that people with different labels that and then other folk and it's a people to people powerful group. Strangely, this is a good example of where the group was originally formed in two thousand ten with a slightly different name, a kind of slightly weird name called the Personalization Forum Group. And personalization was again one of these jargon words, which was about self-directed support.
00;21;50;26 - 00;22;12;00
Simon Duffy
And the reason I got to meet them was like, when they set up and they knew I was just down the road, they said, hey, we'd like some help, Simon. And so I got in the car and went over to see them. And but what they've actually turned into is not really going on about self-direction, but really about solidarity, about community, around peer support.
00;22;12;02 - 00;22;35;00
Simon Duffy
And, and think that there are partners really in this work to really rethink what the nature of community is. And I think self-direction and just becomes a natural part of transforming our understanding of what it means to be a citizen and what community really, really requires of us requires something of us to make it flourish. It isn't something we just get free.
00;22;35;03 - 00;22;39;22
Simon Duffy
It isn't just a civil society structure. It's it's us in action together.
00;22;39;25 - 00;22;49;05
Janet Stewart
Thank you so much for joining me today, Simon. You've given us a lot to think about.
00;22;49;07 - 00;22;59;18
Janet Stewart
Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email ICI pub at NDU.
00;22;59;20 - 00;23;23;12
Pete McCauley
Our show is co-produced at the University of Minnesota's Institute on Community Integration by Impact Managing editor Janet Stewart and ICI media producer Pete McCauley. Skyler Mihajlov is our editor. Graphic designers are Connie Burkhart and Sarah Curtner. For more information on the Institute and all of our products and projects, please visit ICI. N.edu.
Janet Stewart
Welcome to Impact the Conversation, a podcast of the University of Minnesota's Institute on Community Integration. It brings you strategies and stories advancing the inclusion of people with disabilities. Our guests are the authors of impact, our long running magazine that bridges the research to practice gap with professional and personal reflections on what matters most in disability equity today. I'm your host, Janet Stewart.
00;00;49;15 - 00;00;59;23
Janet Stewart
The new impact issue focuses on self-direction. And today we're talking with Simon Duffy, who has been involved with several self-direction programs around the world.
00;00;59;25 - 00;01;34;07
Simon Duffy
Thanks, Janet. So my name is Simon Duffy. My work, with people with intellectual disabilities and in, in England, actually the phrase we use is learning disabilities. And it's actually vary around the world. So I have to keep sometimes adjusting, but my work with folk is started in, nineteen ninety, in London, and my, I hesitate to use the word career because I don't really think about it as a career.
00;01;34;09 - 00;01;58;05
Simon Duffy
My vocation or my journey has been, yeah, unusual, probably because, I'm just I'm still working with people with intellectual disabilities, and I'm just off a call with my friend Wendy with whom I wrote, this book called Everyday Citizenship. And we are currently in a complaints process with her local authority, which is also about personal budget.
00;01;58;05 - 00;02;24;27
Simon Duffy
So we could talk about all of that and self-direction. And even I'm still involved in all of that. But, yeah, roughly speaking, my career's had maybe three main chapters. So the early work was really working alongside people who either had left institutions or helping people leave institutions. And we designed a very kind of a new kind of organization.
00;02;24;27 - 00;02;52;12
Simon Duffy
It was called Inclusion Glasgow. Strangely, Patty Scot, who created a kind of very similar organization in New England at the same time, a new Jersey, rather, in nineteen ninety six, we were doing exactly the same thing, which was basically getting people out of institutional environments, one person at a time, designing everything around the individual, including giving people as much control as possible over budgets.
00;02;52;14 - 00;03;16;25
Simon Duffy
But also policies, procedures, staffing, housing, everything. Just like what what what makes it possible for somebody to lead a really good life? You have to listen to that. So that's a big that was the first chapter and probably the chapter in which I did most of the learning, really. And then the second chapter for me was probably began in about two, well, about maybe two thousand.
00;03;16;25 - 00;03;48;23
Simon Duffy
I, I ended up leading for, about ten years. The work to introduce again, another jargon here is kind of a bit similar to your jargon, but it was we start talking about self-directed support as the kind of system for giving people control, the system of funding and social work and all of this systemic things you need to do to try and enable people to have, lives of citizenship.
00;03;48;26 - 00;04;09;26
Simon Duffy
And we talked about personal budgets rather than I think in America it's more typically been individualized funding or some work like that. So I kind of led the design of that a little bit. Inspired by things I'd learned from the USA. I'd been to Wisconsin, I had I have many friends in the US. I lived in, Colorado for a year.
00;04;09;26 - 00;04;49;05
Simon Duffy
In 94 with my wife is something called a Harkness Fellow. So it's inspired by, I think, a lot of the positive developments in the USA. But the UK is very different. And also it was inspired by some of the things I kind of hated about things. So in the US system, but more or less, so, you know, and there is and I continue to work internationally on those issues and we developed, and we have great US partners on this, that in craft, for instance, the self-directed support network, which is a, an attempt to create some kind of global governance around the ideas of self-direction.
00;04;49;08 - 00;05;32;07
Simon Duffy
Yeah. But in two thousand nine, and partly because, without going into all the gory details, you know, actually changing systems can make you quite a lot of enemies. The, the existing system doesn't always appreciate you changing the system. It turns out, which is perhaps not too surprising. So, in two thousand nine, I was saying, I've been doing really this rather different thing, which started off creating a think tank, which we called the center for Welfare Reform, but has really merged into an attempt to kind of create, a movement for citizenship or some kind of strange, I'm not even sure what it is, which is kind of embarrassing, as I'm probably leading it is
00;05;32;07 - 00;06;07;09
Simon Duffy
this thing called Citizen Network. But we paying, I think, in one way, what we're doing is trying to take forward the the inheritance that we've been given from, not just talk about self-direction, but more about inclusion. I think like my the inspirations for everything I've done really are from, some folk from the USA, from Canada. I mean, John O'Brien has been a great ally of thought leadership in, in the UK and a great friend to me.
00;06;07;11 - 00;06;34;06
Simon Duffy
People like Beth Mount, Jack Pierpoint, Marsha Forest. Due to snow, who I met several times, these people, really helped stretch my imagination. But my main focus has been on kind of organizing change, and a lot of my work these days is very focused on. I'm using language that I'm slightly uncomfortable with, but I've chosen it because I think it cuts through, at least in a UK context.
00;06;34;08 - 00;06;49;12
Simon Duffy
Just we calling it neighborhood care. So basically saying we really need to rethink the micro communities in which we live and we need to think about care differently. But actually once you start thinking about care differently, you start thinking about everything differently.
00;06;49;18 - 00;07;17;29
Janet Stewart
You're thinking small. You're thinking, let's drill down into individual pods and communities and figure out how that would all work in a more cohesive context. So can you just say a little bit more about the potential you think self-direction has in the disability community, to then cross into big conversations we have about the planet, etc.?
00;07;18;01 - 00;07;43;22
Simon Duffy
Yes, I think so. And I don't know what it feels like in the USA. Too much on this front. I mean, I think that the self-advocacy movement in the UK was inspired again by things in the US, and I have friends like in People First Wisconsin. So I get some sense of it, but. I think.
00;07;43;24 - 00;07;44;27
Janet Stewart
We've.
00;07;44;27 - 00;08;20;08
Simon Duffy
Gone I think we're in kind of stage three of self-advocacy, if that makes sense, in, in, in the UK. And what I mean by that is, you know, when I started my career, self-advocacy was just not on the agenda. And in the early 90s we, we actually created on the first helped create one of the first self-advocacy groups in Suffolk, which I at that time was working in London for my sins, as a no of not, I think I escaped eventually, but, the, you know, it was it was just establishing itself, just creating some legitimacy for itself.
00;08;20;11 - 00;08;42;21
Simon Duffy
And then and then it starts to get some status and even get some funding and, and, again, the US has been better up, I think, than many countries that recognizing the need for, building and structures of advocacy into every system. I actually think I think that's one of the most inspiring things about the US approach.
00;08;42;21 - 00;09;11;18
Simon Duffy
The UAP, the protection and advocacy, the council side. That's kind of structural elements of amplifying voice. But in the UK we have had versions of that not quite as well established, but and Self-advocates spent time articulating their rights and pushing for their rights and pushing for things that, that are important. But I think it's changing a little bit in a, in a, in a good way.
00;09;11;18 - 00;09;26;09
Simon Duffy
I think that the conversation is shifting and I again, have no idea, but I don't think it's just shifting in the UK, I, I've been to Finland, I work quite line in Spain. I've seen the same in Australia and New Zealand with allies.
00;09;26;12 - 00;09;26;27
Janet Stewart
So what's.
00;09;26;27 - 00;09;49;18
Simon Duffy
Changing station shifting into articulating people's sense of themselves as citizens with capacity, with gifts, with responsibilities? It's not just a rights conversation anymore. It's, I think broadly speaking, it's becoming a much more mature, responsible citizen conversation.
00;09;49;20 - 00;09;50;22
Janet Stewart
So, so I think.
00;09;50;23 - 00;09;56;09
Simon Duffy
That's creating a different feeling for what might be possible.
00;09;56;12 - 00;10;11;11
Janet Stewart
So just maybe to, to say that, to underline that. So are you saying that globally self-advocacy is driving self-direction or is it the other way around.
00;10;11;13 - 00;10;42;10
Simon Duffy
Oh no. Well, no, I suppose I think it's not drugs. So it's, it's, it's having an impact on self-direction. I think that, I wouldn't use the word driving. That implies something much stronger than I think I'm saying. I suppose what I feel is that when I listen to people, people's, the narrative is changed and people's ability to articulate who they are in the world, not only what they're entitled to, but what they can give has changed and improved.
00;10;42;13 - 00;11;27;00
Simon Duffy
And so that changes the whole conversation in an interesting way, I think, and I have no idea how global this is when I'm just talking about my perception. But to to root this and I'm not I'm more talking about the, the way this changes people's interest in community. So, I can I can so in a sense, self-advocacy and self-direction, although they're not quite the same thing, but let's just treat that as kind of the what we've have is been 20 or 30 years where people with intellectual disabilities, but also the allies and also families have started to realize that people have rights and people have voices, and people should be able to
00;11;27;00 - 00;12;06;01
Simon Duffy
self direct and should be able to shape. And so the conversation has shifted again, lots of constraints, lots of barriers, lots of problems. But it's definitely different to how I experienced it 35 years ago. And lots of positive change. But it seems to me that that that change in emphasis is leading to a kind of further maturity in the conversation where people then start to ask themselves, well, what am I doing in the world, particularly a world where it is clearly not working very well?
00;12;06;03 - 00;12;26;08
Simon Duffy
I'll give you a very concrete example of what I mean here. Or maybe that is. Oh, well, we've been working closely with, an organization called Planet Inclusion, which is the major, intellectual disability organization spanning. And we were at a conference and I ran a workshop there. And I am not fluent in Spanish, just to be clear.
00;12;26;08 - 00;13;00;11
Simon Duffy
So it was supported by, but the, the workshop was about neighborhood care, and I asked people to imagine that their neighborhood in Spanish, their barrio, had become surrounded with water, a very real issue, in fact, not just a kind of, little scenario, but, you know, something that the world is having to really face. But we then said, like, so imagine this is your neighborhood and this is your in this neighborhood.
00;13;00;11 - 00;13;22;09
Simon Duffy
And, how do you want it to be? And we set a series of kind of chat questions and challenge. What principles do you want to operate in this neighborhood, and what kind of what kind of spaces do you need to create and rituals do you need to create and actions would you create and roles in Ukraine? I mean, this is I'm at the moment, I'm very focused on like, what are those the right questions to be asking?
00;13;22;09 - 00;13;45;28
Simon Duffy
So I don't know. But lots of interesting answers. But I'm not quite sure. Asking all the right questions to get all the answers we need. And this is a back in hard hat workshop. A lot of people with intellectual disabilities in this workshop, as well as a few families and, some professionals and some government officials, nobody struggled to generate ideas.
00;13;46;00 - 00;14;11;08
Simon Duffy
Nobody didn't get it. Like people got that? Oh, yeah, it's not them. It's us. And the scale changed people's perceptions. And, and the rising water sense creating a a sense that the that there is us that has to kind of grapple with this change that I find it very encouraging and, and there are other things going on.
00;14;11;09 - 00;14;37;27
Simon Duffy
Okay. This is what gives me hope. The main thing people were focused on was taking care of all the people. Two weeks ago in Sheffield, my city, we had something called Fearless City Summit. So we had over four hundred people come to a two day weekend event, some people with disabilities, but it was not, about disability. It's about how do we, the citizens build a model of neighborhood care.
00;14;37;29 - 00;14;52;04
Simon Duffy
There's energy out there for this. Injustice is increasing and environmental catastrophes happening around us. And and care systems are actually breaking down. And the only answer to that is those.
00;14;52;07 - 00;15;22;16
Janet Stewart
Can't remember it was a paper you wrote or, a dissertation. I can't remember the format, but the headline of it was, if if self-direction is so good, why is it so hard? Because that's that's something, that our editors have been wrestling with in some of our articles. You know, we want to celebrate this wonderful system and, and showcase a lot of the highlights and, and celebrate the more independent lives that people are living.
00;15;22;18 - 00;15;42;16
Janet Stewart
But we also want to, you know, very, realistically and provocatively point out that they're we're putting up a lot of roadblocks, that, that, that this community doesn't feel need to be there. So, so what what answer did you find to that question? Why is it so hard?
00;15;42;18 - 00;16;25;12
Simon Duffy
There's not a quick answer to that question, but I think there are some things that you can definitely say. Ed Roberts in Berkeley, it was nineteen sixty five when he got the first bit of individual funding that I've seen cited. So the numbers of people are self directing the number of, governments that have adopted some kind of policy. The numbers of people in those systems has generally been growing and, that the but slowly and with challenges, if you've read the literature around self-direction, there's, there's almost like a constant refrain, which is that, oh, look, if people have flexibility in how they use their funding, the money goes further.
00;16;25;19 - 00;16;56;28
Simon Duffy
People are more creative outcomes are better. And what what does flexibility cost and doesn't cost anything economically does it. So. And so who's got a stake in reducing flexibility. Well the it's the paternalistic self-interest of I don't know whether it's bureaucrats is a factor. But like when the when they're when they've when they're doing these things definitely bureaucrats is maybe the right term.
00;16;57;00 - 00;17;17;04
Simon Duffy
And they may be on on other days lovely social workers or they may be playing some other role in the system, but when they're basically telling people who know better than them how to live their own life, that they can't do something because it's against the rules, then what's operating has got nothing to do with economic rationality. It's people in the system.
00;17;17;04 - 00;17;19;03
Simon Duffy
We don't want to let go of power.
00;17;19;05 - 00;17;47;18
Janet Stewart
What? Just to kind of wrap up, what gives you hope today when we get, like, getting back to self-direction? I, I think, it was, two thousand eighteen that your report came out. You know, we've had a good six years since then. Have you seen some progress? So as you look, into the future a bit in self-direction, is there some hope there?
00;17;47;21 - 00;17;52;20
Janet Stewart
Or is it clouded by elections around the world? I mean, what do you think?
00;17;52;22 - 00;18;27;13
Simon Duffy
Well, I think there are several kind of helpful signs. If I can try and squeeze them together. I mean, I, I've written a lot about some of the mistakes made in Australia around, funding system for disability. But preceding that, what I think of as a terribly bureaucratic system that I have created a campaign of people with disabilities, family members and providers created more pressure than I've ever seen in the world to reform their broken system.
00;18;27;19 - 00;19;01;06
Simon Duffy
And they have I mean, I think it's actually almost well, it's problematic, but they've increased spending on disability supports by about four hundred percent in ten years in Australia. In Australia. Yeah. I mean, Australia's really worth looking at. I think, and I mean the actual details of the system I say I'm highly critical of and I think that they have not done a good job of making the system very well designed for the purposes of self-direction and not very well designed for the purposes of economic sustainability.
00;19;01;06 - 00;19;29;24
Simon Duffy
I think. But they gosh, when you go to Australia, these issues are front page news. And that's because disabled people got organized and made that happen. So that gives me hope. And then they did that by creating a very powerful coalition and by changing the story, going back to solicitor earlier, their campaign was called Every Australian Camps, and they could change the whole disability story into a universal story.
00;19;29;26 - 00;19;52;10
Simon Duffy
And they made people realize that disability was something that could happen to them, and that they needed a system that was fit for purpose for everybody. And they got principles of individualization, self-direction in the kind of in the manifesto and to some degree in the system. Just I think that they unfortunately, the bureaucrats designed the system, not people with disabilities.
00;19;52;12 - 00;20;20;01
Simon Duffy
But so Australia gives me enormous hope. Yeah. My friends in Spain give me hope because I see there is a country where the government and the leading civil society institutions, and this is partially post Covid, grappled with the fact they saw all these deaths in these care homes. They realize these care homes were fit for purpose, and they've developed a very broad vision for deinstitutionalization.
00;20;20;01 - 00;20;49;26
Simon Duffy
That's not just about people with intellectual disabilities. It's about older people. It's about younger people. It's about homelessness. They started to realize that the kind of things that, that you've been thinking about around inclusion and the institutionalization and citizenship that in the states have been certainly part of the conversation for decades. They start to realize that could be the key to unlocking lots of social problems in Spain, in a way I've not seen before.
00;20;49;26 - 00;21;23;03
Simon Duffy
So there are places that have got a much broader vision that's not trapped inside a silo of ideas or mental health or whatever it's actually about. This is a social change we all need to get on board with. And I think Spain's a good example of that. And, so lastly, I would say. I mean, I'm inspired by when I go down the road to my friends in Doncaster, and this is where there are three thousand five hundred people in an organization called People Focus Group, Doncaster.
00;21;23;06 - 00;21;50;23
Simon Duffy
That people with mental health problems, that people with disabilities, that people with different labels that and then other folk and it's a people to people powerful group. Strangely, this is a good example of where the group was originally formed in two thousand ten with a slightly different name, a kind of slightly weird name called the Personalization Forum Group. And personalization was again one of these jargon words, which was about self-directed support.
00;21;50;26 - 00;22;12;00
Simon Duffy
And the reason I got to meet them was like, when they set up and they knew I was just down the road, they said, hey, we'd like some help, Simon. And so I got in the car and went over to see them. And but what they've actually turned into is not really going on about self-direction, but really about solidarity, about community, around peer support.
00;22;12;02 - 00;22;35;00
Simon Duffy
And, and think that there are partners really in this work to really rethink what the nature of community is. And I think self-direction and just becomes a natural part of transforming our understanding of what it means to be a citizen and what community really, really requires of us requires something of us to make it flourish. It isn't something we just get free.
00;22;35;03 - 00;22;39;22
Simon Duffy
It isn't just a civil society structure. It's it's us in action together.
00;22;39;25 - 00;22;49;05
Janet Stewart
Thank you so much for joining me today, Simon. You've given us a lot to think about.
00;22;49;07 - 00;22;59;18
Janet Stewart
Thanks for joining the conversation. If you'd like to reproduce all or part of this podcast, please email ICI pub at NDU.
00;22;59;20 - 00;23;23;12
Pete McCauley
Our show is co-produced at the University of Minnesota's Institute on Community Integration by Impact Managing editor Janet Stewart and ICI media producer Pete McCauley. Skyler Mihajlov is our editor. Graphic designers are Connie Burkhart and Sarah Curtner. For more information on the Institute and all of our products and projects, please visit ICI. N.edu.
