Lived Experience for Impact: Enabling work-orientated service systems change and mutual value co-creation through the lived experience of adults with learning disabilities and autism

Project focus This proof-of-concept study will deliver urgent and impactful research which can be scaled to deliver an ambitious collaborative study across the UK on the mutual gains potential of work-oriented service system reform. Our developmental study will explore the connections/disconnections between local social care and Supported Employment services, for working age adults with learning disabilities and/or autism (LDA), as well as the enablers and constraints on systems change. The lived experience of working age adults with LDA is central to our project and approach. Our study focuses on the following research questions: What is the experience of paid work and Supported Employment for working age adults with LDA known to social care services, and what shapes their experience? Drawing on different perspectives (e.g. working age adults with LDA, families/unpaid carers, social workers, employability advisors, employers) what is the perceived value and impact of Supported Employment and paid work among adults with LDA? How can the social care service system be transformed to deliver positive impacts for stakeholders, what factors enable/constrain change and who needs to be involved? Our project has three main areas of work: WP1: Building policy and practice relationships. Establish a Research Advisory Group (RAG) representing broad policy/practice groups (e.g. British Association for Supported Employment, DWP, Local Government Association) to meet online three times during the project, steering the research, building strong relationships and driving our collaborative funding bid. WP2: Methods co-design. Establish a Lived Experienced Advisory Panel (LEAP) with adults with LDA and family/unpaid carers. Hold four in-person meetings to i) build relations and deliver training/support on qualitative research methods, ii) co-design participatory and inclusive research methods for working age adults with LDA known to social care services, iii) co-produce data analysis, and iv) sense-check findings and assess participant impact of the project to inform bid development. WP3: Methods testing. Test methods and collect qualitative data in four local authority areas in England and Wales. Qualitative research (co-designed in WP2) with working age adults with LDA known to social care services and semi-structured interviews with unpaid carers/families, social workers, employability advisors and employers. PPI PPI is core to our project, shaping our values, activities, and people. Our LEAP is led by PPI experts (MacIntyre and Speakup) and will deliver meaningful collaboration with working age adults with LDA, their families and unpaid carers to co-design methods and co-analyse data. All LEAP participants are supported throughout our project by the PPI leads. Drawing on a dedicated budget, we will recruit around 10 participants. Timeline Project start: 1 January 2026 for 10 months. Key deliverables: Co-designed qualitative method(s) that will have been tested for use with working age adults with LDA known to social care services. LEAP log, detailing the main insights from each meeting to inform bid development Analysis report, including an accessible summary co-produced with disabled people s organisation and CoApp, Speakup. Co-developed collaborative research bid outline as foundations for submission to next NIHR Work and Health Research Collaboration call.