Reclaiming social care: Adults with learning disabilities seizing opportunities in the shift from day services to community lives
Lead Research Organisation:
University of Southampton
Department Name: Sch of Geography & Environmental Sci
Abstract
This study is about the ways in which people with learning disabilities and their allies are managing change in their social care, support and learning opportunities. A transformation is taking place in the UK (echoed elsewhere) in which many more disabled people are now living independently, as part of a broader move towards social care provision that is personalised and within the individual's control. Meanwhile, there have been significant cuts to local authority budgets, with day centres, adult education provision and other services closing or limiting availability. While the move from institutional funding to personal budgets in adult social services is offering disabled people the chance to gain more independence, arrange support, and take control over their life, this is a real challenge for people with learning disabilities. Members of this group are less likely to report that this has been a positive change for them; they experience more uncertainty over the changing sector in which day services are not being adequately replaced by alternatives. In this new landscape, there is some local evidence of people with learning disabilities (and their families and allies) creating new initiatives: innovative forms of peer-led support, including 'friendship circles', to provide support, learn and share knowledge, make and meet friends as well as collective pooling of personal budgets to do something bigger, such as hiring out a former day centre for activities. However, wider evidence of these groups and the broader impacts of the changing landscape on people with learning disabilities is lacking.
The proposed research seeks to address this gap in knowledge by examining how people with learning disabilities are responding in proactive ways to day service changes. It will explore how they are managing to participate in community settings and creating new forms of collective peer-led support. It will examine the informal, lifelong and community learning involved in the development of these, what we call, 'self-build networks'.
The researchers will undertake, for the first time, a series of detailed area-based case-studies of learning disability support landscapes across England and Scotland including interviews and observation. This will involve looking in-depth at local peer-led networks to identify how they are organised, supported and funded, their activities and connections, and their opportunities and challenges for expansion. The project will also establish an online resource to document the findings from these studies including images and short films to provide information and inspiration for other self-build networks. The project outcomes will enhance the fledgling network of self-build networks across the UK through a series of activities which will inform the future development of this emergent and important form of social care and informal learning. The activities will also facilitate connections and peer learning amongst often very locally-based networks, and through active engagement with local and national stakeholders, including local authorities, voluntary organisations, self-advocacy groups, colleges and private sector care providers.
The proposed research seeks to address this gap in knowledge by examining how people with learning disabilities are responding in proactive ways to day service changes. It will explore how they are managing to participate in community settings and creating new forms of collective peer-led support. It will examine the informal, lifelong and community learning involved in the development of these, what we call, 'self-build networks'.
The researchers will undertake, for the first time, a series of detailed area-based case-studies of learning disability support landscapes across England and Scotland including interviews and observation. This will involve looking in-depth at local peer-led networks to identify how they are organised, supported and funded, their activities and connections, and their opportunities and challenges for expansion. The project will also establish an online resource to document the findings from these studies including images and short films to provide information and inspiration for other self-build networks. The project outcomes will enhance the fledgling network of self-build networks across the UK through a series of activities which will inform the future development of this emergent and important form of social care and informal learning. The activities will also facilitate connections and peer learning amongst often very locally-based networks, and through active engagement with local and national stakeholders, including local authorities, voluntary organisations, self-advocacy groups, colleges and private sector care providers.
Planned Impact
Who will benefit from this research?
This research will firstly benefit those people involved in it. It will engage with people with learning disabilities, and their families and supporters (e.g. friendship circles, advocacy groups) in two areas in England and two in Scotland. It will also involve the local and national voluntary and self-advocacy organisations; local and national governments; and private sector social care providers who contribute to the study.
Others who are likely to benefit include other fledgling self-build networks, other providers of social care, and other self-advocates and stakeholders concerned with the implications of the changing social care landscape including commissioners and policy makers. We can be confident of the benefits to people involved in managing the changes in social care as the project has been developed in consultation with them (e.g. TLAP - Think Local, Act Personal). Their support indicates the significant benefit the research can offer to these, and other, organisations, in the development and management of effective post-welfare provision of social care and support for people with learning disabilities and their families.
The academic beneficiaries are discussed elsewhere, but understanding of the issues addressed in the study together with the changing concepts of social care and community learning is of critical interest to academics in the geography, education, disability studies and social policy disciplines.
How will they benefit?
The research is addressing an emerging and little known phenomenon, about which there is no substantive or accessible research. The project will fill this gap, and provide a usable and developmental set of outputs for the above stakeholders and social science researchers. Three local Advisory Groups (one combined group in England and two in Scotland) will help to tie the study to local areas in which developments are most feasible and from which others can learn.
People with learning disabilities, and their families and carers/supporters will benefit from having examples of networks and their associated learning opportunities illustrated for them in the project findings. This will be true also of local and national voluntary organisations. These stakeholders will have opportunities to engage in workshops during the study, thus connecting with the ideas and data in an evolving way as they emerge. They will be enabled to meet with other networks, and with voluntary organisations, government and academic researchers, to share knowledge and develop provision.
The various stakeholder beneficiaries will have access to resource packs ('how to' guides) and an online resource in which they will be able to see multimedia accounts of how people with learning disabilities are reclaiming social care through various self-built networks. The online resource will provide them with accounts of how people with learning disabilities and their families and supporters are finding and negotiating support outside of day services and their involvement in small-scale, peer-led networks. Local and national voluntary organisations will benefit from debates about the findings in the workshops, professional press and on Twitter. Local government provision of social care and support for people with learning disabilities and their families is under significant pressure. Self-build networks offer the potential for the development of alternative and innovative services. As such, local authorities, will benefit hugely from increased knowledge generated by the research project (through the resource packs and online resource) about the activities of these organisations, and how they can best be supported. Local authorities will be able to access the briefing papers, resource packs, online resource, and a small number will be invited to attend local and national feedback workshops where they can interact with these organisations.
This research will firstly benefit those people involved in it. It will engage with people with learning disabilities, and their families and supporters (e.g. friendship circles, advocacy groups) in two areas in England and two in Scotland. It will also involve the local and national voluntary and self-advocacy organisations; local and national governments; and private sector social care providers who contribute to the study.
Others who are likely to benefit include other fledgling self-build networks, other providers of social care, and other self-advocates and stakeholders concerned with the implications of the changing social care landscape including commissioners and policy makers. We can be confident of the benefits to people involved in managing the changes in social care as the project has been developed in consultation with them (e.g. TLAP - Think Local, Act Personal). Their support indicates the significant benefit the research can offer to these, and other, organisations, in the development and management of effective post-welfare provision of social care and support for people with learning disabilities and their families.
The academic beneficiaries are discussed elsewhere, but understanding of the issues addressed in the study together with the changing concepts of social care and community learning is of critical interest to academics in the geography, education, disability studies and social policy disciplines.
How will they benefit?
The research is addressing an emerging and little known phenomenon, about which there is no substantive or accessible research. The project will fill this gap, and provide a usable and developmental set of outputs for the above stakeholders and social science researchers. Three local Advisory Groups (one combined group in England and two in Scotland) will help to tie the study to local areas in which developments are most feasible and from which others can learn.
People with learning disabilities, and their families and carers/supporters will benefit from having examples of networks and their associated learning opportunities illustrated for them in the project findings. This will be true also of local and national voluntary organisations. These stakeholders will have opportunities to engage in workshops during the study, thus connecting with the ideas and data in an evolving way as they emerge. They will be enabled to meet with other networks, and with voluntary organisations, government and academic researchers, to share knowledge and develop provision.
The various stakeholder beneficiaries will have access to resource packs ('how to' guides) and an online resource in which they will be able to see multimedia accounts of how people with learning disabilities are reclaiming social care through various self-built networks. The online resource will provide them with accounts of how people with learning disabilities and their families and supporters are finding and negotiating support outside of day services and their involvement in small-scale, peer-led networks. Local and national voluntary organisations will benefit from debates about the findings in the workshops, professional press and on Twitter. Local government provision of social care and support for people with learning disabilities and their families is under significant pressure. Self-build networks offer the potential for the development of alternative and innovative services. As such, local authorities, will benefit hugely from increased knowledge generated by the research project (through the resource packs and online resource) about the activities of these organisations, and how they can best be supported. Local authorities will be able to access the briefing papers, resource packs, online resource, and a small number will be invited to attend local and national feedback workshops where they can interact with these organisations.
Publications
Coverdale A
(2019)
The power of gatekeepers - a response to Williams
in European Journal of Special Needs Education
Kaley A
(2021)
Researching belonging with people with learning disabilities: Self-building active community lives in the context of personalisation
in British Journal of Learning Disabilities
Macpherson H
(2021)
Debilitating landscapes of care and support: envisaging alternative futures
in Social & Cultural Geography
Nind M
(2020)
Learning from each other in the context of personalisation and self-build social care
in Disability & Society
Power A
(2021)
Voluntary support in a post-welfare state: Experiences and challenges of precarity
in Geoforum
Power A
(2020)
Self-building Our Lives: social care research report
Power A
(2021)
Personalisation policy in the lives of people with learning disabilities: a call to focus on how people build their lives relationally
in Critical Social Policy
Power, A.
(2021)
Personalisation policy in the lives of people with learning disabilities: a call to focus on how people build their lives relationally
in Critical Social Policy
| Title | Activities Toolkit for people with learning disabilities |
| Description | This toolkit contains 80 practical and meaningful activities for people with learning disabilities to do individually, with their peers, and with people and organisations who support them. The toolkit is printed on a set of cards which comprise a pack of activities. Each activity is related to one of our eleven Building Blocks. These draw directly from the findings from the Self-building Our Lives research project. Many of the activities are supported by additional resource sheets which include guides to the activities, information and ideas sheets, and templates. These can be downloaded and printed from http://selfbuildingourlives.org/activities_toolkit/. The toolkit has a modular design. The activities and resources are numbered for reference only and can be used interchangeably in any order. For example, individual members of a group may do a planning activity (with support, if they choose), which can provide prompts for a group discussion, which in turn can generate ideas for a group project. All the activities presented in this toolkit incorporate opportunities for learning. Key skills and knowledge which might be gained or demonstrated are indicated for each activity. We also developed this toolkit to inspire people and organisations to design and create their own activities and resources, which may be added or used alongside the ones included here. |
| Type Of Art | Artefact (including digital) |
| Year Produced | 2020 |
| Impact | We sent the toolkit to 70 organisations in December 2020. We plan to follow up with the organisations after the immediate Covid19 lockdown period to hear back from them on how the toolkit was used. It is too early to report on any notable impacts. |
| URL | http://selfbuildingourlives.org/activities_toolkit/ |
| Title | Self-Building Our Lives film |
| Description | A 15-minute film exploring the lives of three adults with learning disabilities, Paddy, Matt and Kimberley |
| Type Of Art | Film/Video/Animation |
| Year Produced | 2019 |
| Impact | Showing of film at national feedback event |
| URL | http://selfbuildingourlives.org/video/ |
| Description | We have now reached the end of our project (18 February 2020) and have been able to refine our preliminary findings from last year. The new social care context explored in this research indicates that people with learning disabilities can benefit from the personalisation agenda and to self-build a meaningful and fulfilling life if the right support is in place. Currently support for people is patchy. Uneven and often unreliable provision is undermining people's confidence and ability to transition to using a personal budget to self-build their lives. For people with learning disabilities, we found that learning must occur outside of building based services, in the communities people use and occupy. The support services in the research varied in how much they purposefully, or incidentally, supported informal, peer learning. At their best they recognised that they could create a learning culture in which peer mentoring and peer learning were resources to be promoted and valued; they understood that they were part of a support system and learning network. More widely, we found that to enable people with learning disabilities to take part in meaningful activities, learn new skills and roles, reduce the risk of isolation, and have more of a say in their local networks and activities, they require eleven 'building blocks' outlined below: 1. Planning and finding support - We found that people with learning disabilities' awareness and capacity to find out about what support was available and how to access it was hugely variable. This depended on family but also on the extent to which people were involved in different friendship and self-advocacy groups that offer peer-support and help to gain the confidence and capacity to have a say in planning that support. 2. Finding Out Information - Being part of a learning disability self-advocacy group or friendship network was the most helpful way of keeping up-to-date, enabling members to share information and experiences with each other. 3. Getting your Voice Heard - Participants' ability to build a fulfilling life in their communities came from gaining the confidence to make their voices heard. Self-advocacy was key to building the confidence and ability to speak out, make decisions and take part in discussions about their lives. 4. Managing Benefits and Money - As a consequence of the challenges with earning and managing money, there were lots of examples of people who did not have much money and who worried about it. Some people had taken part in money awareness training organised by their local self-advocacy organisation which helped improve people's confidence with managing money. 5. Running a Home - Our participants often needed support to run a home, which was not always readily available, and in most cases was time restricted. A group of participants were members of a collective neighbourhood volunteer scheme where members received support and offered peer support to each other. This offers a model which could be adopted elsewhere. 6. Getting Around - While travel training has been an ongoing focus for local authorities, significant issues remain. The limited availability of bus services, particularly in the rural areas we studied, was a major concern for participants. Building the confidence to travel by bus can take time for people with learning disabilities and for families, who also need to gain confidence in someone travelling on their own. Local authorities could recognise the importance of travel when planning the local social care market, support and activities to prevent further decay of bus services and the isolation this can bring. 7. Keeping and Feeling Safe in the Community - Our participants showed strong awareness of the risks of harassment and the need to keep safe. Many had learned ways to avoid harassment when alone, such as staying away from large groups. This was often gained through peer support in self-advocacy and friendship groups. 8. Spending Time with Friends and Family - Some participants had few opportunities to meet up with friends, especially in the evenings or at weekends. Some did not have the support to do this. Learning disability friendship groups, where available, were a lifeline for people to learn these skills. Participants talked about becoming less shy, more outgoing, more communicative and generally more confident through taking part in group activities in community settings. 9. Getting Involved in Disability Groups - Many people had gained the confidence and skills to get involved in their community from taking up positions on a management or steering group within their local disability support organisation. Managers of organisations that facilitated this spoke of the benefits to the organisation of involving people with learning disabilities including the culture change amongst staff. Peer-to-peer learning was taking place, with role models to follow and peers with similar experiences to share support and advice. 10. Doing Leisure Activities - While many activities are freely chosen by individuals who have the will and means to do so, different barriers affected how participants spent their time. In some areas, activities were closing down due to funding cuts and broader changes in the local area. As with all the other building blocks, being part of a self-advocacy or friendship group was an important route to gaining such skills. 11. Volunteering and Working - Many participants were eager to find paid work for financial reasons and to gain independence. However, for many participants who had followed 'ready for work' courses at college with the hope of eventually getting a paid job, these roles often did not materialise. Participation in voluntary roles was more common and generally valued by participants. The lack of opportunities to progress into 'real' and sustained employment remains a major issue. Underpinning these building blocks, we found three enabling factors that promote successful self-building which policy makers, local authorities, support organisations, national learning disability and related organisations need to support to help people to successfully self-build: 1. Advocacy, including self-advocacy, is essential, especially for the most isolated, to provide people with the skills and confidence to make their voices heard. This is a crucial step to taking part in their communities. 2. User involvement: Involving people with learning disabilities in management and advisory roles (e.g. on steering groups) can ensure support organisations create something people want and have a commitment to, and where they can learn together. 3. Friendship groups are important ways for people to make and meet friends as day-centre use declines. They can foster peer-support, and help participants gain the skills and confidence to live as part of their wider communities. In addition to the findings about individual self-building practices, our research with organisations also uncovered some key findings about the social care sector: *Precarity of local voluntarism: Whilst recognising the successes of voluntary initiatives, we also found that these organisations are very precarious, and often have to rely on small grants and local charitable donations. Many organisations are also aware of the need to demonstrate the benefit of the services that they offer and the potential savings to health and social care as a result of their existence. However being able to demonstrate this benefit demands significant time, resources and organisational capacity (e.g. some organisations provide a cost-benefit analysis to the local authority) while smaller organisations may only be able to demonstrate the benefit of their services anecdotally. *Bidding for voluntary funding in a debilitated landscape: Providers talked about the pressures pertaining to sustaning support initiatives within adult social care - while people are talking about the pressures on the NHS there is less conversation around the challenges faced by the social care sector. There is a sense that there is a need to raise awareness at highest levels - concerning the future of social care for adults with learning disabilities. *Day centres still persisting: In two of the case-study areas, day centres remain open. In another, one has been re-established as a social enterprise. Day centres can often represent a 'safe space' of support - but one which can be rigid and inflexible and does not provide people with enough opportunities to spend time in their communities. Day centre placements are generally reserved for people who have higher support needs. In contrast, there appears to be regular use of 'day services' which typically offer more flexibility and choice. |
| Exploitation Route | Public policy: We have already received some preliminary interest in our research from the national social care agency, Think Local Act Personal, a partnership of Department of Health, NHS England, and Association of Directors of Adult Social Care. Organisations that support people with learning disabilities also attended our national feedback event and expressed an interest in our 11 building blocks resource pack and indicated that they would use this in their planning discussions. We will continue to build on these initial signs of impact, during our IAA award and beyond. |
| Sectors | Communities and Social Services/Policy |
| URL | http://selfbuildingourlives.org/resources/people_with_learning_disabilities_and_their_supporters/ |
| Description | With personalisation (self-directed support), there is increased onus on people to learn and gain the capacity to navigate the social care landscape. Our findings from the research have helped to outline the conditions that are necessary for people to self-build their daily lives when responsibility for daytime social care is handed to them. We presented these findings at the Think Local, Act Personal (TLAP) event (Self-Directed Support: Getting past stuck! - 24 September 2019), followed by our final national research impact event (Coin Street Neighbourhood Centre, London 13th November 2019). These events together included approximately 100 people (approx. 55 and 45 respectively). The main audiences were national social care stakeholders, local authority commissioners, support organisations, self- and statutory-advocacy organisations, and adults with learning disabilities. These were both primarily practitioner/non-academic focused events. At our national impact event, we premiered our new film and showcased our key findings and resource packs. Adults with learning disabilities who had been involved in our advisory groups co-presented. Our research was very well received by the audience in both our evaluation and on Twitter. Following the two events, TLAP indicated that our work is helping to inform their guidance and were keen to use our materials, signalling some further impact in future. The web resource and twitter account have been key vehicles for promoting our film and resource pack. Our main report was published on this site. With our Impact Acceleration Account award, we have developed an activities toolkit for people with learning disabilities and their supporters, which we sent out to 70 support provider organisations nationally. This has enabled us to continue to promote the use of our findings to inform practice. |
| First Year Of Impact | 2019 |
| Sector | Communities and Social Services/Policy |
| Impact Types | Societal |
| Description | ESRC Impact Acceleration Account Southampton |
| Amount | £15,974 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2020 |
| End | 10/2020 |
| Title | Self-building social care: Interviews and focus groups with people with learning disabilities and key practitioners 2018-2019 |
| Description | These data were generated as part of a two-year ESRC-funded research project examining how people with learning disabilities and their allies are responding to changes in social care provision in the UK, as traditional day services close and policy shifts towards personalisation and community-based enterprises. Using the concept of 'self-building' to identify emergent practices and learning, researchers at the University of Southampton and the University of Dundee sought to develop case studies in four geographical areas in the UK: an urban and rural area in the South of England, and an urban and rural area in Scotland. The transcripts comprise interviews with local authority commissioners (n=5) and practitioners from supporting organisations (n=22), and focus groups and follow up individual interviews with people with learning disabilities (n=25). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2020 |
| Provided To Others? | Yes |
| Impact | Not aware of any impact |
| URL | https://dx.doi.org/10.5255/UKDA-SN-854243 |
| Description | Research project - Angus partner |
| Organisation | Angus Independent Advocacy |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Providing opportunities for involvement, empowerment and learning for the members of the Advisory Group. Involvement of the organisation in current research on social care and support, development of resources, and networking with other (local and national) organisations in Scotland and England. |
| Collaborator Contribution | Angus Independent Advocacy has contributed to the research in two key ways: First, by collaborating on the development of the research proposal, and providing a letter of support. Second, by co-organising and supporting one of the research project's Advisory Groups. We have adopted a participatory, locally-based qualitative approach, and so the involvement of Angus Independent Advocacy and the Advisory Group has been crucial to the management and development of the project, including research design, research methods tools, and dissemination plans. |
| Impact | No outputs so far. |
| Start Year | 2016 |
| Description | Research project - Glasgow partner |
| Organisation | The Advocacy Project |
| Country | United States |
| Sector | Charity/Non Profit |
| PI Contribution | Providing opportunities for involvement, empowerment and learning for the members of the Advisory Group. Involvement of the organisation in current research on social care and support, development of resources, and networking with other (local and national) organisations in Scotland and England. |
| Collaborator Contribution | The Advocacy Project has contributed to the research in two key ways: First, by collaborating on the development of the research proposal, and providing a letter of support. Second, by co-organising and supporting one of the research project's Advisory Groups. We have adopted a participatory, locally-based qualitative approach, and so the involvement of The Advocacy Project and the Advisory Group has been crucial to the management and development of the project, including research design, research methods tools, and dissemination plans. |
| Impact | No outputs so far. |
| Start Year | 2016 |
| Description | Research project - Scottish national partner |
| Organisation | Scottish Commission for Learning Disability |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Informing Scottish Commission for Learning Disability (SCLD) about developments and innovations in social care and support related to people with learning disabilities. SCLD have a policy priority focused on the 'development and evaluation of asset based approaches to service design and delivery'; the research project will contribute to this. |
| Collaborator Contribution | SCLD were partners in the development of the proposal and provided a letter of support. So far, have provided very useful context on policy on social care and support for people with learning disabilities in Scotland, and helped to identify key organisations. Will provide further support regarding dissemination in the remainder of the project. |
| Impact | No outputs as yet. |
| Start Year | 2016 |
| Description | Think Local Act Personal Social Care National Partnership |
| Organisation | Think Local Act Personal |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | Think Local Act Personal (TLAP) is a national partnership of Department of Health and Social Care, Association of Directors of Adult Social Care (ADASS) and the Local Government Association (LGA). Two preliminary project development meetings have been held with the PI (Dr Power) to find ways to maximise the value of the project outputs to TLAP about developments and innovations in social care and support related to people with learning disabilities. TLAP have a policy priority focused on innovations which support the development of personalised social care via their Making It Real framework; the research project has contributed to this and a constructive relationship is ongoing . |
| Collaborator Contribution | TLAP were partners in the development of the proposal and provided a letter of support. So far, they have provided insights on national social care policy, shared examples of asset-based community support initiatives for people with learning disabilities in the UK, and helped to identify key organisations. They have invited the research team to present at one of their national personalisation events and have indicated further support with ongoing dissemination of findings and recommendations. |
| Impact | We presented our findings and recommendations at the TLAP personalisation event in London on 24 September 2019. Full details are listed under our research engagement events. https://www.thinklocalactpersonal.org.uk/Events/Self-Directed-Support-Getting-past-stuck-24-September-19-09-24/ This collaboration is between academic and non-academic partners rather than being multi-disciplinary |
| Start Year | 2017 |
| Description | 11 Building Blocks Resource Pack for People with Learning Disabilities |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | The 11 Building Blocks Resource Pack for People with Learning Disabilities is one of the core outputs from the project. The resource pack comprises 11 pages (A4 size) of material with each page focusing on a key building block for an adult with learning disabilities to self-building their daily lives in the community. The resource pack is divided into three phases: Planning the essentials Managing the day to day responsibilities Finding meaningful things to do The intended purpose of the resource pack is to prompt discussions with people with learning disabilities and either their local self-advocacy group or supporters (family members, advocates) about the different aspects of life to focus on (e.g. keeping and feeling safe). Under each building block, we provide prompts for discussion, some of the learning from our project about what participants have done to manage that particular building block, and what more needs to be done. We launched the resource pack at our National Impact event and received initial positive feedback: "We will use some of your research methods - particularly around building blocks - particularly around activities, interests and lifestyles. I'm going to spend time with your resource pack and look at ways of promoting it to our local authority and social work teams, schools & colleges." We also have been awarded an Impact Acceleration Account award to expand on the testing and wider dissemination of this resource. |
| Year(s) Of Engagement Activity | 2019,2020 |
| URL | http://selfbuildingourlives.org/resources/people_with_learning_disabilities_and_their_supporters/ |
| Description | Activities Toolkit co-design group |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Third sector organisations |
| Results and Impact | Following our ESRC funded study (2018-2020), we were awarded an ESRC Impact Acceleration Account award (March - October 2020) to develop an activities toolkit that people with learning with learning disabilities and their supporters could use to help build their skills and confidence in their daily lives. The Activities Toolkit was co-designed with members of People First Dorset who also helped test the activities and resources. The group included adults with learning disabilities and non-disabled facilitators within People First Dorset. The co-design involved several online meetings and Whatsapp communication to create the materials and to test them out with a wider group of members. This helped strengthen our relationship with the organisation and contribute to our efforts to develop future opportunities for further involvement. |
| Year(s) Of Engagement Activity | 2020 |
| Description | Blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Learning Disability Today Blog In this blog, I look at how people with learning disabilities are getting back to building community lives in the wake of the pandemic and the challenges of supporting people to connect and communicate online. It reports on the webinar organised by the research team, entitled Re-Connecting Our Lives: How people with learning disabilities are getting back to building community lives in the wake of the pandemic, held online on 23rd November 2021. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.learningdisabilitytoday.co.uk/re-connecting-our-lives-in-the-wake-of-the-pandemic |
| Description | Community Living article |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Andrew Power published article for magazine based on Self-building Our Lives. The article was primarily a vehicle to direct practitioners to research project website. |
| Year(s) Of Engagement Activity | 2020 |
| URL | https://www.cl-initiatives.co.uk/ |
| Description | Conference paper |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Melanie Nind presented her work at the Inclusive and Supportive Education Conference (ISEC) conference at UCL/online. There was an engaged question and answer session and shared reflection following the paper. Nind, M. (2021) Lifelong learning: Informal peer learning as part of self-building lives in the community, ISEC conference, UCL/online, 3-5August 2021 |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.ucl.ac.uk/inclusive-supportive-education-conference/ |
| Description | Conference paper |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A poster presentation was given at the Open University 'Social History of Learning Disability conference' - where the theme for this conference was belonging. This poster was a collaborative output between academic researchers on the project and members of the project advisory group. The findings of the poster presentation were subsequently written up as a paper and submitted to a peer reviewed journal - this was co-authored with members of the advisory group. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Conference paper |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Coverdale, A. & Nind, M. Learning Through 'Self-building' In A New Social Care Landscape, European Conference of Educational Research, Hamburg, 3-6 September 2019. This was a paper delivered at an annual European conference on education. Some participants reported that they were inspired by our session to consider how peer support and sel-advocacy groups can enable people with learning disabilities to learn life skills. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://eera-ecer.de/previous-ecers/ecer-2019-hamburg/ |
| Description | Conference paper |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Conference presentation online, intended to share the findings and issues arising from them. Led to important connections with the Scottish Learning Disability Observatory. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Conference paper |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Edward Hall presented a paper at the American Association of Geographers Conference 2021 (Seattle/online) in the 'Local Social Infrastructures of Care' session (9th April): 'Rethinking personalisation of care and support in the Covid-19 pandemic' (Edward Hall, Andrew Power, Alex Kaley, Hannah Macpherson). The talk generated questions and discussions afterwards with international academic scholars. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Conference paper |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Melanie Nind delivered a conference presentation online at the British Educational Research Association (BERA) Conference, intended to share the findings and issues arising from them. Nind, M. (2021) Peer learning among adults with learning disabilities amid personalisation and austerity, BERA conference, online, 13-17 September 2021. |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.bera.ac.uk/conference/bera-conference-2021 |
| Description | Conference paper |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Postgraduate students |
| Results and Impact | Presentation to International Medical Geography Symposium, with circa. 30 delegates, primarily health geographers, postgraduates and health/social care practitioners. Paper presented was on social care voluntary organisations, published in Geoforum. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://imgs2022.org/ |
| Description | Conference plenary |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Prof. Melanie Nind (Co-I on self-build social care study) delivered a keynote, 'Being there, belonging and making a difference'. Invited keynote at the Australasian Society for Intellectual Disability conference, 4/9 November 2022. This connected up the discussions about community & personalisation in the UK and Australia. The ASID 'promotes research to inform and influence good practice and policy to achieve a society where people with intellectual disability are afforded the same rights and opportunities as all citizens' and the online conference included academics, practitioners and people with learning disabilities. The session - and a discussion with Christine Bigby - were recorded for members. No idea of further impact yet. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Conference plenary |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Dr Edward Hall (Co-I) delivered an invited keynote, at the International Association for the Scientific Study of Intellectual and Developmental Disaabilities (IASSID) Special Interest Research Group Profound Intellectual and Multiple Disabilities 10th Roundtable meeting, 7th and 8th February 2023, Leuven. Hall gave one of the two presentations in the 'Keynote session: Introduction on participation and inclusion'. Presentation: 'Researching belonging with people with learning disabilities' (based on Kaley et al, 2022). |
| Year(s) Of Engagement Activity | 2023 |
| Description | Conference presentation - IASSIDD (Glasgow) |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Paper presented at World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities 2019 (Glasgow) |
| Year(s) Of Engagement Activity | 2019 |
| URL | http://www.iassidd2019.com/programme-2/ |
| Description | Conference presentation - International Medical Geography Symposium |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Paper presented at International Medical Geography Symposium 2019 (Queenstown, New Zealand) |
| Year(s) Of Engagement Activity | 2019 |
| URL | http://www.imgs2019.com/schedule.shtml |
| Description | Interdisciplinary Conference in Disability Research |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Other audiences |
| Results and Impact | Andrew Power presented a paper on the research project at NNDR (May 2019), Interdisciplinary Conference in Disability Research, Copenhagen Denmark. The intended purpose was to present the research to an international disability studies audience and to build relationships with delegates to help foster future potential collaborations. Approximately 12 people attended the session. The paper sparked questions about the challenging context in which social care operates in the UK, and a discussion on the relative role of austerity, as either a source of or an obstacle to innovation. The paper also prompted requests for further information on the project. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.nndr2019.org/ |
| Description | Interview for national news |
| Form Of Engagement Activity | A press release, press conference or response to a media enquiry/interview |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Media (as a channel to the public) |
| Results and Impact | Dr Andrew Power was interviewed for a BBC South News story on peer support activities of adults with learning disabilities in Southampton. The news story was broadcast on 16 June 2016. The news team became interested in the story after Dr Power published a press release following the completion of a research project funded by British Society of Gerontology into the activities of older adults with learning disabilities. |
| Year(s) Of Engagement Activity | 2016 |
| Description | Learning Disability Today Blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Blog on national learning disability news website by Dr Edward Hall (Co-I) on the threats and opportunities of day centre closures for adults with learning disabilities (https://www.learningdisabilitytoday.co.uk/threats-or-opportunities). The blog highlights the focus of our project to examine how some people with learning disabilities are responding to a changing care landscape by producing their own support networks. The intended purpose was to link in to a learning disability audience including disabled individuals, families and practitioners and broadcast our project. |
| Year(s) Of Engagement Activity | 2018 |
| URL | https://www.learningdisabilitytoday.co.uk/threats-or-opportunities |
| Description | National Impact Feedback Event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | This was the research project's flagship national impact event. We hosted the event in London (Coin Street Neighbourhood Centre) on 13 November 2019. The audience (45 people) comprised social care practitioners, organisation managers, self-advocates with learning disabilities, and advocacy workers. A strong social media presence via Twitter also enabled many more to engage with the points of discussion about the event. The event comprised a presentation of the findings from the research study, involving stories from participants and animated discussion. We also premiered our film showing the lives of three protagonists with learning disabilities. We scheduled lots of time for creative thinking in breakout discussion groups and a question and answer session. Our researcher Hannah Macpherson used a bubble-machine to illustrate how the small innovative examples of social care - that offer glimmers of hope - float around like bubbles. Hannah described how there's something inexplicably magical about them, but sadly they are inherently vulnerable, reminding us of the fleeting nature of these moments of social care innovation that we celebrate. This enabled people to consider that we cannot be solely led by the inspiring stories of innovation. Rather, we need to arm ourselves with these stories and the knowledge of what conditions are necessary to support them to achieve wider change. Our conference evaluation revealed very positive feedback, including delegates who stated having a change in views and an intention to change practice: "challenged some of my thinking. As an organisation (CIC) we will discuss self building as a concept and will include it in staff training and induction. We will introduce it to our members. We will use some of your research methods - particularly around building blocks - particularly around activities, interests and lifestyles" "Well organised and balanced day. Packed a huge amount in and ensured all members of the research group were equally represented. I'm looking forward to looking at the website and following the ongoing work of the research group. Great ways of capturing feedback and ideas - very creative and inclusive methods. Will borrow them!" "It was a good mix of academics, providers, family supporters & selfadvocates. There was clear learnings from the day. There was learnings I could take back to my organisations." Full conference report: http://selfbuildingourlives.org/news/?story_id=19 |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.eventbrite.com/e/self-building-our-lives-research-event-tickets-71623205937# |
| Description | News piece |
| Form Of Engagement Activity | A magazine, newsletter or online publication |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | One page news item in Research Intelligence, the newsletter for members of the British Educational Research Association. This was a special issue on Post-Compulsory and Lifelong Learning. It has led to an approach email from a principal of a further education college to share key messages from the study as they relate to the college provision. |
| Year(s) Of Engagement Activity | 2019 |
| URL | https://www.bera.ac.uk/publication/winter-2019 |
| Description | Royal Geographical Society Conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Other audiences |
| Results and Impact | Paper presented at Royal Geographical Society (with Institute for British Geographers) Annual Conference. |
| Year(s) Of Engagement Activity | 2019 |
| URL | http://conference.rgs.org/AC2019/334 |
| Description | Self-Build Social Care on social media |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Third sector organisations |
| Results and Impact | A Wordpress site (https://selfbuildsocialcare.wordpress.com/) and Twitter handle (#SelfBuildSocialCare) have been used in tandem to publicise and engage a wider audience with our project. The site was established at the outset, with a live blog of the research and advisory team's activities. There are also occasional reflections on the process of data analysis. The twitter handle has been used to share shorter updates and reflections on the project. As the project develops in the second year, these will be used more regularly to highlight preliminary findings. Five research team members and our advisory group members use Twitter, and through collective Likes and Retweets, we have been able to reach an audience of over 100 people. Given the stage in the research, we it is too early to say what outcome will emerge from this publicity. |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://selfbuildsocialcare.wordpress.com/ |
| Description | Self-Building Our Lives online resource |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | Self-building Our Lives online resource is the main dissemination vehicle for the project. It is designed to be a clear and accessible showcase of our research outputs, including the resource packs, films, information about the project, and record of activities (blog). The intended purpose of designing the online resource was to reach as wide an audience as possible, including a lay audience (easy read materials available) and for organisations and commissioners working in the social care sector. It also was designed to serve as an online hub which we could use to link our content to our social media account (#SelfBuildingOurLives, @SelfBuildCare). Through the website, we have had several requests for further information from organisations working across the country. We hope to expand on this over the duration of our Impact Acceleration Account award period (March - October 2020) |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://selfbuildingourlives.org/ |
| Description | Talk at Social History of Learning Disabilities conference |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Dr Andrew Power and Prof. Melanie Nind... |
| Year(s) Of Engagement Activity | 2018 |
| URL | http://wels.open.ac.uk/events/social-history-learning-disability-conference-2018 |
| Description | Vocational College workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Schools |
| Results and Impact | Andrew Power and Andy Coverdale (RF on project) arranged a research engagement event for health and social care learners at Eastleigh College (vocational college). This took place on 22 January 2020. There were 15 learners that attended (and the lecturer). We had originally designed the session as an ESRC Festival of Social Science event, but we were not able to secure a date with the College for this. Despite this, we organised the session as a role play and feedback event in the spirit of a festival event. To start, we began by getting the learners to think about their own lives, including the people in their life and their weekly schedules of places and activities. This helped them to begin to think about the idea of self-building their daily lives, and what kinds of support they have had and currently rely on to enable them to do this. Next was the role-play session. Each learner took on the role of a character in a social care situation. Five characters had learning disabilities with very different experiences and support networks. Five characters worked in various roles within social care including a social worker, a personal assistant, a volunteer, and a care worker in a group home. And five characters ran local organisations including an advocacy organisation, a friendship group, a college, and a local bookshop. We gave each participant enough freedom to make their own decisions about what path they could take, but they had to work with the support that was available and the limitations that they had. This opened up a whole host of points that we could share insights from our research. Some could not believe it was so complicated a landscape to navigate and how people can get 'stuck'. The feedback from the participants showed that the role play had been the first time that they 'lived' the system, as they were faced with navigating it with the different barriers and hurdles to jump through. The idea of having to build up confidence to have one's voice heard (sometimes over years of doing self-advocacy) - a common experience shared from our research participants with learning disabilities -was something they had never considered. The session was really an opportunity to test out an approach which colleges and universities around the country that teach social care could use to help inspire learners who will be working in the sector to experience some of the lived realities of people with learning disabilities seeking support and the challenges of adapting organisational structures to support this group. |
| Year(s) Of Engagement Activity | 2020 |
| URL | http://selfbuildingourlives.org/news/?story_id=28 |
| Description | Webinar |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Webinar on 26 November 2021: Re-Connecting Our Lives: How people with learning disabilities are getting back to building community lives in the wake of the pandemic This national online event was an opportunity for people with learning disabilities and staff and managers of their support organisations to come together to share lessons from living and working through the pandemic, and to help plan their future activities in helping people to re-connect their lives. The event generated a set of common lessons that were shared and sparked questions and discussion about different experiences. Speakers included: Andrew Power & Andy Coverdale, University of Southampton Edward Hall, University of Dundee Kerry Martin, Project Worker, People First Dorset Zoe Howe, Project Manager, People First Dorset. John Paul Donnelly, self-advocate, Glasgow Disability Alliance Alex Kaley, Lancaster University Matthew King, self-advocate, Busy People advocacy group at VoiceAbility, Southampton |
| Year(s) Of Engagement Activity | 2021 |
| URL | https://www.eventbrite.com/e/re-connecting-our-lives-tickets-191156924507# |