Co-producing new ways of working with adults with learning disabilities, their family carers, and paid accommodation support staff, to better support their journey from the family home into supported accommodation, as part of them living healthy, active and fulfilling lives.
Background
In line with an overall UK ageing population, adults with a learning disability are also living longer (Office of National Statistics, 2021). Indeed, there is a predicted 30% rise in adults with learning disabilities aged 50+ requiring social care services in England, which will inevitably include various forms of accommodation support as ageing family carers struggle to fulfil their caring role (Kruithof et al, 2021; Gilbert et al, 2007). Meanwhile, there is a paucity of research that explores the accommodation support services this population can and do access as they age, how such services can be developed and improved, and the extent to which commissioners are planning for the needs of this growing population (Tiley et al, 2023). This is despite housing and related support - the need to commission and provide a range of accommodation options, which take into account people’s preferences and specific support needs - being included within the National Institute for Health and Care Excellence (NICE) guidelines for learning disabilities (NICE, 2018).
The Care Act (2014) is the legal framework for adult social care in England, which includes the practice of co-production in its statutory guidance, defining it as a way for individuals and groups to influence the design, commissioning and delivery of care services through professionals and people with lived experience working together. Co-production involves working in equal partnership to create services that better meet people’s needs, leading to more effective, strength-based and person-centred support. Co-production is used in evaluation, policy making, service development and provision, but can also be applied within research (Beresford et al, 2021; Glynos and Speed, 2012). Previous work by Pettican et al (2022) has asserted that the practices of co-production sit well within a participatory action research (PAR) approach.
Project
In April 2025 the University of Essex formed a Knowledge Transfer Partnership (KTP) with Minstead Trust. Minstead Trust is a charity in the South East of England, which works in collaboration with people with learning disabilities and their family carers, to enable them to achieve greater independence and live happier and healthier lives. One of their main areas of work is supported accommodation. Supported accommodation is a form of housing with flexible support, which enables a person with a learning disability to live away from the family home and as independently as possible. Such accommodation includes independent accommodation (owned or rented) with visiting support, and accommodation with on-site and residential support. As they begin the journey of moving into supported accommodation, adults with a learning disability, their family carers, and Minstead Trust accommodation support staff, form a tripartite relationship through which support is planned and delivered together. However, to date, practices in support provision have differed, undermining these relational decision-making processes. This has led to some miscommunications and areas of inconsistency and discontinuity in the provided support and living circumstances. These are sector-wide issues that ultimately affect service users’ participation in the activities and occupations that provide meaning, purpose, and routine in their everyday lives. They also contribute to broader system issues, such the persistent health inequities people with a learning disability experience (Chapman et al, 2024; University of Bristol Norah Fry Centre for Disability Studies, 2019), and carer burnout and workforce retention (Institute of Public Care, 2020)’.
The overall aim of the KTP is to use a Participatory Action Research (PAR) approach to co-produce new ways of working with adults with learning disabilities, their family carers, and support staff, to improve their journey into and experience within supported accommodation.
The KTP is developing distinct new ways of working through using co-production and PAR. Importantly, such work involves all three groups who are involved in the tripartite relationship (1. adults with a learning disability 2. family carers 3. Minstead Trust staff) working together on an equal basis. Fundamentally, this approach involves doing research with rather than on people, with the research team working together through cycles of planning, action, and reflection, to explore issues that impact their lives (Cornish et al, 2023; Grimwood, 2022).
The academic research team (see below) are collaborating with Minstead Trust through using innovative participatory research methods, which will help to identify current communication issues and other shortcomings, from the perspectives of adults with a learning disability, their family carers, and accommodation support staff. Using experiential, embodied methods such as theatre of the oppressed allows for non-verbal as well as spoken forms of communication and will facilitate increased safety for participants to share their challenges. Such collaborative work will then enable the co-production and testing of distinct new ways of working and other novel solutions.
The KTP has six inter-connected stages:
- Establish a co-produced approach with the Minstead Trust stakeholders
- Participatory mapping: Developing a shared understanding of the issues
- Co-producing new ways of working
- External implementation of the new ways of working: Developing a community of practice
- Reporting, final documentation preparation
- Consolidation and evaluation
Progress so far
The KTP Associate (Alice Clarfelt) has regularly spent time with Minstead Trust over recent months, both informally and via structured individual and group discussions. This has been an important part of developing relationships across the three groups that make up the tripartite relationship: (1) adults with a learning disability (2) family carers (3) Minstead Trust staff. This relationship building work has been a fundamental part of establishing the co-produced approach, with all voices and experiences being considered equal. It has also enabled us to begin to shape the design of stages two and three, and to negotiate decisions about methods with people who will be involved.
Research ethics approval has been obtained from the University of Essex (ETH2526-0028), and data collection for stages two and three is currently underway. The data collection involves iterative PAR cycles, at times involving the three stakeholder groups in sharing their experiences on their own, and at other points bringing them together to share experiences and co-produce possible new ways of working.
As part of stages two and three, we have also involved two MSc Occupational Therapy students (Jodie Clarricoats and Panashe Chandiwana), who are undertaking work within the KTP as part of their dissertations. Jodie is completing a scoping review (a specific form of literature review that maps the current evidence in relation to a specific topic, and also identifies priorities for further work) of the existing literature, which answers the question: What are the experiences of adults with learning disabilities and their families when transitioning into supported accommodation? Panashe is undertaking qualitative interviews with representatives from organisations external to Minstead Trust, who have or are undertaking similar work. Panashe and Jodie’s findings will then be fed back into the KTP to ensure we continue to share learning to inform action towards the new ways of working.
Funding
This project has been funded by Innovate UK.
References
- Beresford, P., Farr, M, Hickey, G, Kaur, M, Ocloo, J, Tembo, D, Williams, O et al. (2021). The Challenges and Necessity of Co-Production: Introduction to. In: COVID-19 and Co-Production in Health and Social Care Research, Policy, and Practice: Volume 1: The Challenges and Necessity of Co-Production Vol. 1. eds. Bristol: Policy Press.
- Chapman HM, McMahon M, Kaley A, Mafuba K, O’Donovan MA (2024) (2014). Editorial: The case for more action and more research into healthcare provision and health inequalities for people with intellectual disabilities. British Journal of Learning Disabilities, 52(3), 437-442.
- Cornish, F. et al. (2023) ‘Participatory action research’, Nature Reviews Methods Primers. Springer US, 3(1), pp. 1–14.
- Gilbert A, Lankshear G, Petersen A (2007) Older family-carers’ views on the future accommodation needs of relatives who have an intellectual disability. International Journal of Social Welfare. 17: 54-64.
- Glynos J & Speed E. (2012). Varieties of co-production in public services: Time banks in a UK health policy context. Critical Policy Studies, 6(4), 402–433.
- Grimwood BSR (2022) Participatory Action Research: Democratising Knowledge for Social Justice. In: CW Johnson, DC Parry (eds) Fostering Social Justice through Qualitative Inquiry (2nd edition) New York: Routledge.
- Institute of Public Care (2020) Ordinary and unique lives for adults with a learning disability and/or autism: a six steps approach. Oxford: Oxford Brookes University.
- Kruithof, K, IJzerman L, Nieuwenhuijse A, Huisman S, Schippers A, Willems D & Olsman E (2021) Siblings’ and parents’ perspectives on the future care for their family member with profound intellectual and multiple disabilities: A qualitative study, Journal of Intellectual & Developmental Disability, 46:4, 351-361.
- National Institute for Health and Care Excellence (2018) Learning disabilities and behaviour that challenges: service design and delivery (NICE guidelines NG93). Accessed on: 06/02/2026.
- Office for National Statistics (ONS) (2021). Overview of the UK Population: January 2021. Accessed on: 23.03.2024
- Pettican, A., Goodman, B., Bryant, W., Beresford, P., Freeman, P., Gladwell, V., Kilbride, C. and Speed, E., (2022). Doing together: reflections on facilitating the co-production of participatory action research with marginalised populations. Qualitative Research in Sport, Exercise and Health. 15 (2), 202-219
- Tiley E, Jordan J, Larkin M, Vseteckova J, Ryan S, Wallace L (2023) Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review. Journal of Applied Research in Intellectual Disabilities. 36(2), 205-410.
- University of Bristol Norah Fry Centre for Disability Studies. (2019). The Learning Disability Mortality Review (LeDeR) Programme: Annual Report 2019. Download the PDF.
