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A Platform for Change? Inclusive Research about 'Choice and Control'

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Title: A Platform for Change? Inclusive Research about 'Choice and Control'
Language: English
Authors: Williams, Val, Ponting, Lisa, Ford, Kerrie
Source: British Journal of Learning Disabilities. Jun 2015 43(2):106-113.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA
Peer Reviewed: Y
Page Count: 8
Publication Date: 2015
Document Type: Journal Articles
Reports - Research
Descriptors: Foreign Countries, Mental Retardation, Social Science Research, Social Influences, Self Advocacy, Employment Level, Self Determination, Personal Autonomy, Research Methodology, Research Design, Participative Decision Making
Geographic Terms: United Kingdom
DOI: 10.1111/bld.12123
ISSN: 1354-4187
Abstract: Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self-advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of "choice and control", showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a "bandwagon effect" of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and "direct" user level and is often achieved by people with learning disabilities having a voice at the dissemination stage.
Abstractor: As Provided
Entry Date: 2015
Accession Number: EJ1061777
Database: ERIC
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  Value: <anid>AN0103386240;f0401jun.15;2018Jul09.15:06;v2.2.500</anid> <title id="AN0103386240-1">A platform for change? </title> <p>Accessible summary: The governments in the UK want people with learning disabilities to have a voice about what happens in their own life and also in policy.One way of doing this is through research. This paper looks at two inclusive research projects, which were about people using direct payments and personal assistants. The projects both employed people with learning disabilities.Each of these projects made a training pack from the research, so that they would help people with learning disabilities and their supporters. They also had some effects in ways that were not planned, because the government wanted to learn from them about inclusive research.All research seems to have most effect when there are many voices seeking change, including those of policy makers themselves.Inclusive research is a way of achieving ‘choice and control’. But just like with direct payments and personal budgets, the best way in these projects was to have good support from other people who will listen to you, and help you decide things for yourself. Summary: Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self‐advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of ‘choice and control’, showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a ‘bandwagon effect’ of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and ‘direct’ user level and is often achieved by people with learning disabilities having a voice at the dissemination stage.</p> <p>inclusive research; participation; personal budgets; relational autonomy; Choice</p> <hd id="AN0103386240-2">Why do we do research?</hd> <p>We were both researchers on a big project called ‘Skills for Support’ at the West of England Centre for Inclusive Living (WECIL) and Norah Fry, from 2005 to 2007.</p> <p>Research gives us power, and that's how we get listened to. It's important that we were involved in the ‘Skills for Support’ research, and that we were the researchers, with paid jobs. Because we've got experience of what it's like to be disabled, we can understand other people with learning disabilities better. We can get the inside of what they're saying out.</p> <hd id="AN0103386240-3">What the research meant for us</hd> <p>I remember coming for an interview for the project, and People First helped me to do that. It was great to get the job. I've always wanted to see what research was all about. Before I got this job, I didn't know about research. I did in a way, because I was doing things with People First, but I'd never actually gone out and carried out what I'd learnt with People First. It was fantastic to come off benefits, and to get my first proper paid job. But I didn't expect to get a job, because I expected to be on the scrapheap for the rest of my life. That's the important part of it for me personally. And I've built my confidence through being on this project. We've enjoyed every bit – and it's really hard to pick out or remember one thing more than another. What we've enjoyed is making photo stories about support. The thing we've also most enjoyed about this project is the travelling, and the challenge of going on a train by ourselves, and even going abroad to tell people about the research in Holland.</p> <hd id="AN0103386240-4">What sort of research should be done?</hd> <p>Research is anything that you want to research about really. Research is thinking about people's lives, and what they do with it. And also, how they get their support. Because remember, we were looking at the support. So, we went to (city in the north), to find out what people think, and as you can see there are some pictures of us there, with people from the local People First, who are friends of ours now, aren't they Kerrie? They are people with support needs, and also on direct payments, which is something else.</p> <hd id="AN0103386240-5">How did we work together in the team?</hd> <p>It was good to have a supporter. She translated what I want, and she helped me out as well as the team. It's also very good to have a research advisor I think, because she can advise us on what to do and what not to do, and help us make our decisions.</p> <p>We looked at videos, to make sure that people were getting the right support that they received. If they were all good and dandy, that's fine – but there are some people anywhere in life, that are not getting the right support. They're not receiving what they paid for. So Kerrie and I looked at videos, and we worked out who was getting the right support and who wasn't, didn't we? The important things to learn in research, there's one important thing, and that is called ‘respect’. You have to have respect for people in research. That's the most important thing of all. And also the word beginning with ‘C’, confidentiality. You have to have confidentiality in research as well.</p> <hd id="AN0103386240-6">Our research was important for other people</hd> <p>I think it's very good that we've done research into skills for support, to find out about how people paid as supporters do it, and looking at different ranges of support. I think it's dreadful that the Government can't listen to disabled people. For instance, we found that there's very little training for PA's, and that was quite astonishing. Why has it taken this long? People have had bad support for so many years, why does it take a project like this, to get them to listen?</p> <p>Support is important because otherwise everybody in the long run, whether they've got a disability or not, needs support. People like Val get it from her family, or from who she works with. In every situation, people regardless if they've got a disability, get support in some way. But if we've got a disability, it makes it more vulnerable, because we need more support than other people. But I just wish that the people of the ordinary minority would just treat people with disabilities with respect.</p> <hd id="AN0103386240-7">Main Article (Williams)</hd> <p>User participation has been at the core of our work at Norah Fry, ever since our colleague Ken Simons’ pioneering work in the field (Simons [<reflink idref="bib34" id="ref1">34</reflink>] ). In fact, learning disability policy in the UK has reflected this theme since at least the 1980s, and in some respects it has now become accepted as political rhetoric (Harkes et al. [<reflink idref="bib17" id="ref2">17</reflink>] ). The liberal principle of autonomy or self‐determination has two meanings, which have often been linked in English policy statements, one relating to the collective rights of groups of citizens to be self‐determining, and the other relating to the individual's control over their own life. This paper focuses on questions relating to the impact of research on both types of autonomy, and particularly examines ‘inclusive’ research, questioning how and when the process of research can be linked to its outcome.</p> <p>Since 2001 (Department of Health [<reflink idref="bib8" id="ref3">8</reflink>] ), English policies directed towards people with learning disabilities, and generic disability policies, have emphasised the links between individual choice and active citizenship, in which end users of those services should shape the ideas of government:</p> <p>At the same time as giving people greater choice and control over the services they use, we also need to ensure that everyone in society has a voice that is heard. (Department of Health [<reflink idref="bib11" id="ref4">11</reflink>] : 7.4)</p> <p>The theory is that people who speak up in policy forums can shift and influence the policies which ensue, and can to some extent change the direction of the services and provision that have direct effects on their own lives (Ramcharan & Grant [<reflink idref="bib31" id="ref5">31</reflink>] ). However, does user participation always make a difference? Williams ([<reflink idref="bib42" id="ref6">42</reflink>] ) reviewed the impact of the participation of people with learning disabilities and found it extremely difficult to trace any outcome back to specific participation forums.</p> <p>At the same time, there have been continued concerns about participation, with critiques (Dowse [<reflink idref="bib13" id="ref7">13</reflink>] ; Redley & Weinberg [<reflink idref="bib32" id="ref8">32</reflink>] ) questioning the authenticity of the process. This may be because we have focused too much on the individual skills for autonomy. Amongst people with learning disabilities, there have long been arguments about relational and interdependent modes of decision making (Jenkinson [<reflink idref="bib20" id="ref9">20</reflink>] ; Wehmeyer & Bolding [<reflink idref="bib40" id="ref10">40</reflink>] ), echoed in the notions of interdependence expressed by Smith ([<reflink idref="bib35" id="ref11">35</reflink>] ).</p> <p>It is better to describe all persons, whether or not impaired, as ‘interdependent’, rather than either independent or dependent, which then allows agency, autonomy and choice to be promoted as a matter of degree for everyone, recognizing how complex social structures and institutions facilitate this process for all (p. 29)</p> <p>These ideas are also extremely useful in approaching situations where people are participating in public or organisational decision‐making, and indeed in the arena of inclusive research, to which we will now turn.</p> <hd id="AN0103386240-8">Inclusive or emancipatory research</hd> <p>As with public participation, the attempt to include people with learning disabilities as researchers has been a hallmark of Norah Fry work over the past 25 years (Minkes et al. [<reflink idref="bib27" id="ref12">27</reflink>] ; Rodgers [<reflink idref="bib33" id="ref13">33</reflink>] ; Ward & Simons [<reflink idref="bib39" id="ref14">39</reflink>] ; Williams [<reflink idref="bib41" id="ref15">41</reflink>] ; Williams et al. [<reflink idref="bib45" id="ref16">45</reflink>] ). As the new ‘paradigm’ of emancipatory research by disabled people themselves was being proposed by the UK disabled people's movement (Oliver [<reflink idref="bib29" id="ref17">29</reflink>] ; Zarb [<reflink idref="bib49" id="ref18">49</reflink>] ), those researchers concerned with people with learning disabilities moved ahead with the task of exploring this new territory of empowerment. From the start, as Ward and Simons outlined in 1998, the endeavour was meant to be a broad church; people with learning disabilities could take part in research in many different ways, and at various levels, as subsequently emphasised by those who suggested the term ‘inclusive research’ (Walmsley [<reflink idref="bib37" id="ref19">37</reflink>] ; Walmsley & Johnson [<reflink idref="bib38" id="ref20">38</reflink>] ), and it is that term which now covers a wide range of approaches, many of which emphasise the ‘team’ of nondisabled and disabled researchers who interact and contribute jointly (Bigby et al. [<reflink idref="bib4" id="ref21">4</reflink>] ; Nind & Vinha [<reflink idref="bib28" id="ref22">28</reflink>] ). These discussions about team approaches to inclusive research draw strongly on the theories of relational autonomy discussed above (see also Bandura [<reflink idref="bib3" id="ref23">3</reflink>] ; Kittay [<reflink idref="bib23" id="ref24">23</reflink>] ; Smith [<reflink idref="bib35" id="ref25">35</reflink>] ).</p> <p>The focus of this paper is the relationship between process and outcome. Taking the achievement of ‘choice, control and autonomy’ as an outcome, have inclusive research studies actually made a difference to the lives of people with learning disabilities? That is the question underpinning what follows. I take a retrospective view over a particular strand of research that has threaded through the work of Norah Fry Research Centre over the past quarter‐century, namely research about the experiences of people with learning disabilities who have some control over their own social care budgets. I will attempt to consider the extent to which an inclusive approach to research provides a platform for change. In order to do that, it is necessary to disentangle the process of inclusive research from the product. As discussed in Williams et al. ([<reflink idref="bib45" id="ref26">45</reflink>] ), the importance of participatory or inclusive research can never lie entirely in the doing; it must be also about producing robust research findings, which can lead to change.</p> <hd id="AN0103386240-9">Journey to Independence</hd> <p>In 1998, an inclusive study was funded at an organisation called (Swindon People First), based on their own ideas about direct payments, developed together with Norah Fry Research Centre. The overall goal of the study was encapsulated in the following way:</p> <p>The question for the research team is not whether direct payments for people with learning difficulties are a viable option … but how they can be made to work on a more significant scale (Gramlich et al. [<reflink idref="bib15" id="ref27">15</reflink>] ).</p> <p>The research study took place some 4 years after the initial implementation of direct payments in the UK. Instead of directly provided services, people in need of social care support were to be offered the cash to purchase for themselves what they needed (Department of Health [<reflink idref="bib6" id="ref28">6</reflink>] ). However, from the outset, people with learning disabilities had been underrepresented in the area of direct payments (Gramlich et al. [<reflink idref="bib15" id="ref29">15</reflink>] ), despite campaigns and attempts to include them, spear‐headed by the organisation ‘Values Into Action’ (Holman & Collins [<reflink idref="bib19" id="ref30">19</reflink>] ). Their exclusion was partly because of the original policy directive (Department of Health [<reflink idref="bib7" id="ref31">7</reflink>] ) that social workers should only offer direct payments to service users who were ‘willing’ (to consent) and ‘able’ (to manage) a direct payment. Thus our research had some very strong policy‐oriented goals; it was not so much research about policy, as it was about change.</p> <p>The research received ethical approval from a University committee, and employed (and paid) people with learning disabilities as part‐time researchers, working in a team based at Swindon People First. The disabled people were supported by nondisabled staff, both from their organisation and also within the research, with a ‘supporter’ for the team (who was not a researcher), as well as a research advisor (Val Williams) and a lead researcher (Ken Simons). Additionally, there was a management structure in Swindon People First, supplying supervision and support, as well as other interested members who wanted to get involved with the research as it progressed. All these roles provided measures to check on the power balance within the team (Williams et al. [<reflink idref="bib45" id="ref32">45</reflink>] ), and to ensure that the rights and the voices of the three researchers with learning disabilities were respected. An important aim for the research as a whole was to ensure that the researchers with learning disabilities really did have a voice, and were, as far as possible, in the driving seat during the whole process.</p> <p>Inclusive research (as this type of project was subsequently termed) harbours many tensions (Williams [<reflink idref="bib44" id="ref33">44</reflink>] ; Walmsley [<reflink idref="bib37" id="ref34">37</reflink>] ). For instance, those outside the inclusive research ‘movement’ often suspect that nondisabled people, supporters and academics may in reality be manipulating the voices of those who are intended to be the ‘lead’ researchers. Insider accounts of the process of research can thus be very important, as Chapman & McNulty ([<reflink idref="bib5" id="ref35">5</reflink>] ) and Abell ([<reflink idref="bib1" id="ref36">1</reflink>] ) have also supplied. For instance, one of the dilemmas I recorded in a researcher log (Williams et al. [<reflink idref="bib45" id="ref37">45</reflink>] ) related to the problem of ownership of the research. Members of the research team tended to treat their work days rather like college courses at first, partly because two had come to the job straight from Further Education colleges. When we arrived, they would be likely to ask me: ‘What are we doing today, then?’ I reflected that we would only know that the team had started to ‘own’ their project, when they decided for themselves what was really important to do next in the research; very memorably, that day did come, when the plans I had made for the day were overturned by one of the research team, who suggested and carried forward a particular line of discussion, recording his views about power and control. Further details of what actually happened behind the scenes are analysed in Williams ([<reflink idref="bib44" id="ref38">44</reflink>] ).</p> <p>Why then were these details important? Looking back at the goals of the study, did any of these minute ‘process’ issues have anything to do with what we were trying to achieve? In finding out about the best ways to support people to manage direct payments, we were also trying to enact the best ways to support people to manage research, and it turned out that there was much that was similar in these two arenas, depending as they both did on human relations and interdependence.</p> <hd id="AN0103386240-10">Outcomes of Journey to Independence</hd> <p>Following 84 interviews around the country, with direct payments users, managers of support services, family members and personal assistants, the team constructed their findings around a story‐board approach in which a journey was undertaken, with optional ‘stops’ along the way. At each stop, we explored a different type of support from which at least some people with learning disabilities seemed to be benefiting, including family support, official local authority support, the help of friends, peers and self‐advocacy groups. We aimed to generate a higher level of confidence in the ability of people with learning disabilities to benefit from direct payments, with the right support, and over the course of the project, the direct payments users with a learning disability at national level did indeed increase, from an estimated 216 (6% of the total number of DP users) in 2000 to 900 (9.3% of total) in 2002–2003 (Department of Health [<reflink idref="bib8" id="ref39">8</reflink>] , [<reflink idref="bib10" id="ref40">10</reflink>] : 55). Further, the team produced and published a pack for direct payments support schemes, aimed at people with learning disabilities themselves, to help them understand what direct payments were and to go through the various processes of receiving and managing their own support package (Gramlich et al. [<reflink idref="bib16" id="ref41">16</reflink>] ). As with the process of the research, which depended very much on a relational model, the findings which we emphasised were to do with the interdependence of the person with learning disabilities with those around her. Thus, although the extent of the practice impact is not formally documented, the pack itself and its way of thinking could be seen over the following few years in the practices of DP support services, as they increasingly took on the task of supporting people with learning disabilities to take up direct payments.</p> <hd id="AN0103386240-11">The growth of inclusive research</hd> <p>As the direct payments movement and policy direction shifted in the early part of the 21st century towards the wider personalisation agenda, the ‘Journey to Independence’ project did not disappear. The legacy of the project was perhaps strongest in its ability to represent and popularise the notion of inclusive research. For instance, the Department of Health engaged directly with the research team in 2002, to develop ideas of how to include researchers with learning disabilities in the selection and monitoring of the DH research initiative, which sprang from the ‘Valuing People’ strategy (Department of Health [<reflink idref="bib8" id="ref42">8</reflink>] ). A group of people with learning disabilities, including some of our research team, continued working with the DH through the following years, and produced a report about their recommendations for conducting good quality, inclusive research (Department of Health [<reflink idref="bib9" id="ref43">9</reflink>] ; LD Research Team [<reflink idref="bib24" id="ref44">24</reflink>] ).</p> <p>The ‘Journey to Independence’ study also led directly to some thinking about future inclusive projects, and a proposal was written in 2002 with members of Swindon People First, which was about the way in which personal assistants carried out the support role, and what ‘good support’ constituted from the point of view of people with learning disabilities. Although it did not initially receive funding, that proposal was resurrected at a slightly later date, and became the basis of a partnership between the West of England Centre for Inclusive Living (WECIL) and the Norah Fry Research Centre. It was known as the ‘Skills for Support’ project (Williams & the Skills for Support Team 2009; Williams et al. [<reflink idref="bib43" id="ref45">43</reflink>] ; Williams [<reflink idref="bib44" id="ref46">44</reflink>] ; Marriott & Williams [<reflink idref="bib26" id="ref47">26</reflink>] ).</p> <p>In this second project, the roles were slightly differently positioned. As lead researcher, I took up a role in the project in which I had potentially quite a powerful voice – guiding and supporting, as before, but also able to pursue my own lines of enquiry and my own methodology. One of the hallmark features of ‘Skills for Support’ was in fact the production and analysis of naturally occurring data, in the form of videos of people with learning disabilities doing things with their personal assistants (PAs). The ethics approval in the case of this project thus had to include ways of ensuring, not only that participants with learning disabilities were treated with respect, but also that their PAs provided informed consent. The videos enabled us as a team to look in some detail at what happened in the relationship between a PA and a disabled person, and to experiment with the tools of conversation analysis, contributing the ‘user perspective’ to the academic debate about the practical value of this methodology (Antaki [<reflink idref="bib2" id="ref48">2</reflink>] ). In Williams ([<reflink idref="bib44" id="ref49">44</reflink>] ), I was able not only to explore the academic findings of the project, but also to analyse the detail of interactions that constitute inclusive research itself.</p> <p>The project thus led to outputs that were able to impact on the worlds of practice, and of academia, in different ways. For instance, a training pack was produced, which included a DVD in which the two researchers with learning disabilities talked about and watched short video clips from our research, enabling them to be used in wider arenas for training of personal assistant (Ponting et al., [<reflink idref="bib30" id="ref50">30</reflink>] ). It has subsequently been influential at international level, being ‘translated’ for the Australian market in 2012. Elements of the training pack material were also included in NVQ training courses being produced at the time by the British Institute of Learning Disabilities.</p> <hd id="AN0103386240-12">Inclusive research and impact</hd> <p>These two inclusive projects thus both had impacts that were not entirely prefigured in their original conception. In both studies, the process of including disabled people in research loomed large, when it came to the dissemination phase, and arguably it was that inclusive process that provided the most influential element of each study. In the first, the inclusive research design assisted the Department of Health in developing its own approach to including service users in research; in the second, the development of inclusive CA led to interest at international level in academic circles, echoed by the practical value of the training pack about support practices, still an urgent area for intervention (Flynn [<reflink idref="bib14" id="ref51">14</reflink>] ).</p> <p>Whether or not research is ‘inclusive’, the link between research and outcome is at best tenuous, and in the ‘Journey to Independence’ project, was possible because of its congruence with a wider movement towards direct payments (Williams [<reflink idref="bib42" id="ref52">42</reflink>] ). The study ran ‘with the grain’, in terms of the policy trends in the Department of Health at that time. Government, NGOs, local authorities and disabled people themselves all wanted direct payments to become more widely available to people with learning disabilities at that time, and there had even been a ‘roadshow’ funded by the Department of Health to promote DPs to this group during 1998–1999. There was a general willingness to promote and to increase the impact of direct payments, and possibly the most important way in which that study was able to produce an impact was through the presence of researchers with learning disabilities on public platforms. The immediate governmental reaction to our project was to ask members of the research team and of the wider People First organisation, to help plan and produce a DVD (Swindon People First, 2003) and ‘easy read’ summary of direct payments for people with learning disabilities. That DVD, while very creative, had only loose links with the findings of the research – in some respects, it ran counter to the research itself, which had noted how much support people with learning disabilities needed. By contrast, the DVD showcased people who appeared to decide for themselves, manage their own affairs and step straight into the brave new future of ‘independent living’. Despite this incongruence, there is a sense in which inclusive research can benefit from being part of something much larger, which consists of top–down policy directives and political will, together with grassroots campaigns. In Williams ([<reflink idref="bib42" id="ref53">42</reflink>] ), we termed this the ‘bandwagon’ effect.</p> <p>It is interesting to contrast the inclusive studies I have described with two more recent studies we have carried out relating to personal budgets and direct payments. In one (Williams et al. [<reflink idref="bib48" id="ref54">48</reflink>] ), the funder was a governmental disability‐led organisation, and deliberately set out to commission qualitative research that contrasted user‐led supports with those provided by local authorities. A large‐scale qualitative design (80 participants) was undertaken, with an interpretative approach to the analysis of data, demonstrating rather unequivocally that user‐led supports were appreciated, experienced as more equitable, and less bureaucratic, than local authority supports. However, at a final project event, it became apparent that the commissioning of user‐led organisations was under threat in all our research sites. Whatever evidence was presented about the value of such an approach, it was not going to flourish in times of austerity, and that tension dominated a further study (which had an advisory group of ‘experts by experience’) on a similar topic related to support planning (Williams et al. [<reflink idref="bib47" id="ref55">47</reflink>] ). Thus, whether or not the voices of disabled people are centrally involved, maybe research can only impact on policy to the extent that policy makers are ready and willing to listen. That readiness, in turn, depends on the economic moment and on political pressures.</p> <p>Recent publications on the topic resonate with the findings we published in 2002; Hatton & Waters ([<reflink idref="bib18" id="ref56">18</reflink>] ); Harkes et al. (2013) and Kendall & Cameron ([<reflink idref="bib22" id="ref57">22</reflink>] ) have reported that those people with learning disabilities who receive direct payments experience increases in their quality of life, although Manthorpe et al. ([<reflink idref="bib25" id="ref58">25</reflink>] ) has identified very similar barriers to those found in 2002, and most of this literature reiterates the need for extensive and varied sources of support for direct payments users with learning disabilities, with new guidance and research about people lacking capacity to consent (Department of Health [<reflink idref="bib12" id="ref59">12</reflink>] ). Concerns about the concept of individual autonomy have now largely resulted in academic literature, policy and practice turning towards the notion of relational autonomy, and as Johnson et al. ([<reflink idref="bib21" id="ref60">21</reflink>] ) pointed out, this is also mirrored very much in the field of inclusive research.</p> <hd id="AN0103386240-13">Reflection</hd> <p>I started this paper by considering the separate, linked meanings of ‘choice and control’ and questioned whether inclusive research could influence both the wider participation of people with learning disabilities, as well as their autonomy to direct their own lives. These questions are current in 2014, and there is still debate about the value and feasibility of the neoliberal agenda of policy for people with learning disabilities, both in the UK (Kendall & Cameron [<reflink idref="bib22" id="ref61">22</reflink>] ) and for slightly different reasons in Australia (Soldatic et al. [<reflink idref="bib36" id="ref62">36</reflink>] ). With respect to individual self‐determination, three of the studies discussed in this paper produced outputs that could be used by practitioners, in training or more directly with service users. Williams et al. ([<reflink idref="bib47" id="ref63">47</reflink>] ) for instance, although not inclusive in design, produced an accessible DVD as one of its outputs, which was targeted directly at people with learning disabilities, informing them about their choices, their rights to speak up and the sources of relational support they could draw on. All these studies thus enable the research to speak through the voices of people with learning disabilities, who address their support workers or social workers with their own research messages. The research becomes in a sense a vehicle for this direct communication to take place, and so the outputs have a greater sense of authenticity and worth to those providing practitioner training.</p> <p>Did any of these studies have a direct impact on the participation of people with learning disabilities in policy that is their ‘collective voice’? It should not be forgotten that the researchers with learning disabilities all experienced an ‘impact’ in terms of their own personal lives, their continued interest in research and particularly in the case of Kerrie Ford and Lisa Ponting, their continued involvement in developing future projects and in obtaining paid work through teaching. However, wider impact is more difficult to gauge. All the research mentioned in this paper was at heart about increasing the chances for ‘choice and control’ by people with learning disabilities. In the UK at least, consultation with ‘end users’ of research is now a standard expectation of major government funders, and so the voices of people with learning disabilities do have wider currency in 2014 than in 2000.</p> <p>What is clear from the examples given in this paper is that the actual process of inclusive research fits hand‐in‐glove with the self‐advocacy movement itself. It was by doing their own research, speaking up about it and explaining the findings that the Swindon People First research team was so impressive. Their achievements changed local attitudes towards direct payments as was expressed by participants at each of the project dissemination events. Similarly, the achievements and voice of the research team in ‘Skills for Support’ were probably the most memorable features of the study for our audiences. As all these studies were about ‘choice and control’, it would seem that an inclusive approach within the research itself was the most effective way of achieving impact, by displaying new ways of defining relational autonomy in action. Being included in research, at any level, may be difficult to link with specific impacts at policy or practice level, but it is a core part of the rights‐based movement towards having a voice in matters concerning one's life. Thus the impact of inclusive research can be seen most clearly, I would argue, in the attitudinal changes we have witnessed over the past 25 years, which allow at least for the possibility that people with learning disabilities may be seen as autonomous human beings, drawing on official sources of support, the people around them and the relationships they build up with others, practitioners, friends and family. The challenge is to forge supportive relationships that facilitate people's choices, and we still urgently need to know more about how to do this at a practical level. Our understanding of inclusive research ‘from the inside’ can thus contribute more widely to these continued debates.</p> <ref id="AN0103386240-14"> <title>References</title> <blist> <bibl id="bib1" idref="ref36" type="bt">1</bibl> <bibtext>Abell S., Ashmore J., Beart S., Brownley P., Butcher A. et al. ( 2007 ) Including everyone in research: the Burton Street Research Group. British Journal of Learning Disabilities, 35 : 121 – 4. </bibtext> </blist> <blist> <bibl id="bib2" idref="ref48" type="bt">2</bibl> <bibtext>Antaki C. ( 2011 ) (ed.) Applied conversation analysis. Basingstoke : Palgrave‐Macmillan. </bibtext> </blist> <blist> <bibl id="bib3" idref="ref23" type="bt">3</bibl> <bibtext>Bandura A. ( 2000 ) Exercise of human agency through collective efficacy. 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  Data: Participation, voice and control have long been central concerns in the research at Norah Fry. This paper focuses on inclusive research relating to choice and control, as experienced by people with learning disabilities who use personal budgets and direct payments, and aims to question how the process of inclusive research can be linked to wider outcomes. The paper gives a brief overview of two studies carried out by Norah Fry Research Centre, which were in partnership with self-advocacy groups and employed people with learning disabilities, between 1999 and 2007. Both in research and in everyday life, we question individual notions of "choice and control", showing how relational autonomy was at the heart, both of the process of the inclusive research and also of the outcomes and findings. However, all social research seems to have greatest impact when there is a "bandwagon effect" of policy and practice initiatives. The discussion considers how the impact of inclusive research designs can be at policy, practice and "direct" user level and is often achieved by people with learning disabilities having a voice at the dissemination stage.
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