Dr Elizabeth Tilley

This project aims to co-produce a tool aimed at enabling day services to document the views and experiences of autistic people with profound learning disabilities for use in service development and evaluation. Such tools are of pressing need, as highlighted by the National Institute for Health and Care Excellence (2018) who regard capturing the views of people who access services as being key to improving social care provision. This group rely on service provision throughout adulthood, yet there are no tools or approaches that have been developed to capture this group’s views or experiences. The tool’s concept emanates from inclusive research involving autistic people with profound learning disabilities. It is now being co-produced to a practical application through interviews and workshops with autistic people, people with learning disabilities, family members and support practitioners. Autistica’s funding will expand and conclude co-production activities and support the development of a community informed application to NIHR’s Research for Social Care call.

Research to co-design end of life care planning resources for people with learning disabilities. Project will begin by inclusively reviewing existing tools/resources. The next stage will involve research to inform the co-production of end of life care planning tools and resources for people in services.

There are around 900,000 learning disabled people in the UK and around a fifth are estimated to engage in behaviours that challenge (BTC). These behaviours often occur when the person is upset by a change in their environment. While research and NICE guidance exists on older learning disabled people and their family carers, and separately on people with BTC; policy and research in the UK has so far failed to address how services can be addressed to support older learning disabled people with BTC. We know very little about how family caregivers face the choices and challenges about caregiving as they become older but know that decisions can be left too late to enable choice. We know even less about the experiences of older people with BTC particularly in the context of transitioning to older people’s services, in periods of crisis or at end of life. There is an even more pronounced absence in the academic and grey literature regarding the lives and experiences of older learning disabled people with no family carers. Our study will explore the support and health needs of older learning disabled people and carers and identify ways of easing transitions to different care settings through forward planning and reducing the development of BTC. This is particularly important as learning disabled people are living to an older age. We will explore how carers manage their caring role as they age themselves. How they experience and negotiate behaviours that challenge. How the concept of forward planning can be introduced in a way that is acceptable and reassuring to carers and their children. How health, social care and end of life care services can best support older learning disabled people with BTC including situations where active family involvement is absent. And how commissioners can be innovative in developing a service infrastructure that better meets the needs of this group.

This project aims to foster connections between researchers, self-advocates, families, service providers and policymakers in the field of learning disability, in UK and Japan, in order to explore how learning disabled people can be supported to feel like they belong. The collaboration will explore different theoretical and cultural understandings of ‘belonging’, ‘inclusion’ and ‘a good life’ to identify the places, spaces and relationships in which belonging can best be fostered, as well as to identify the barriers to belonging in different social and cultural contexts. Knowledge and practice will be shared in the areas of health and social care/welfare policy, service provision and advocacy. People with learning disabilities will be at the heart of the project, involved in their capacity as self-advocates and co-researchers. Thus the project will also involve a sharing of knowledge and practice concerning inclusive research, on the understanding that research is another context in which learning disabled people can be supported to ‘belong’.

Contraceptive choices for women with learning disabilities’ is an Open University research project, supported by a grant from Open Society Foundations (Grant No: OR2014-12989). This inclusive project set out to explore women’s contraceptive decision-making and sought to include women with mild to moderate learning disabilities as well as women with high support needs. Between December 2014 and April 2015 we interviewed 19 women living in several locations across the United Kingdom.

The OU’s Faculty of Health & Social Care has been funded by the Arts and Humanities Research Council to develop a co-produced digital and living archive of learning disability history. The project, led by Dr Liz Tilley and conducted in collaboration with the University of East London (Rix Centre) and University of Leeds (School of Fine Arts, Art History and Cultural Studies), runs from 2014-2017. The project explores issues involved in developing an accessible digital archive in collaboration with people with learning disabilities, alongside stakeholders in the fields of technology and design; new media; health and social care; heritage, archives and museums; and education. During the project, a working prototype archive will be developed. The process of producing this prototype archive will enable the team to address a series of conceptual, ethical, legal and technological research questions; set out a sustainability plan for the long-term viability of a learning disability digital archive; and compile training resources and guidance for stakeholders in health and social care, education, and museums, libraries and archives to support people with learning disabilities to become actively involved in collating and recording their history. Please keep an eye on the project website for more information: https://www.klikin.eu/page/view/cat/3407

The project is a literature review for The College of Social Work, covering research evidence on best practice in learning disability, challenging behaviour, and social work. This project arises from the commitment of The College of Social Work to support the action programme agreed between the Department of Health and a range of professional bodies in the aftermath of the abuse at Winterbourne View, revealed in a TV documentary. Its aim is to produce guidance on good practice for social workers who support people with learning difficulties who display challenging behaviour. The objective of the literature review is primarily to inform the thinking of the College bodies – the project steering group and the Professional Assembly – who will be deciding what form the good practice guidance will take. The College wants to ensure that the advice is based on good evidence where that exists. It may also contribute directly to the development of curriculum guidance or other support materials. The final report can be found here: http://www.tcsw.org.uk/standard-2col-rhm-blog.aspx?id=8589948460

MacIntyre Care has, in recent years, rolled out ‘Great Interactions’, a comprehensive change management initiative to ensure that front line staff focus on the quality of the relationship between them and service users, their families, advocates and friends. In addition to training, this initiative has encompassed personality profiling, changes to recruitment practice, to appraisals and to first line manager practice; and tools for reflective practice. The Theory of Change is that workforce ‘behaviour’ rather than ‘values’ is the key to increasing choice and control in the lives of people with learning disabilities. This project evaluates the impact of ‘Great Interactions’ to provide evidence to influence commissioners to move away from commissioning based on cost and risk aversion to outcomes based commissioning. To accomplish this, and using a range of research methods including questionnaires, interviews and observation, the project focuses on the following: • What success looks like • The impact of ‘Great Interactions’ training on service users, families and staff

Since 1966, when it was founded by a parent of a disabled child, MacIntyre has grown to provide support services for over 1,000 children and adults with learning disabilities. To mark its first fifty years, in January 2016 MacInytre Care will launch a celebratory Jubilee history. Using a rich mixture of media including audio, video, photographs, illustrations and text, the Open University research team has worked with MacIntyre to develop an inclusive, interactive and accessible website that celebrates the history of MacIntyre and records their history within the context of the broader changes in learning disability policies and practices.

The focus of the ESRC seminar series (2012-2014) is to explore the methodological challenges related to: 1) involving people with learning disabilities in data analysis, and 2) involving people with learning disabilities who have high support needs in research. The project is led by Professor Jane Seale, in conjunction with Professor Melanie Nind, Dr Liz Tilley, and Dr Rohhss Chapman.