Ensuring that that our research considers and promotes equality, diversity and inclusion is central to the work we do at the School for Policy Studies. Working in partnership with communities and stake holders to identify research questions that matter and ensuring that studies are co-produced wherever possible helps achieve these aims. This series of blog posts looks at some of the ways what we research and how we go about it incorporates EDI principles.
In this post, Kate Bowen-Viner (Social Policy PhD student) explains how research in the Norah Fry Centre for Disability Studies is helping to tackle inequalities faced by people with learning disabilities.
Introduction
Research can and should contribute to improved outcomes for people with learning disabilities. Academics in the Norah Fry Centre for Disability Studies have revealed the stark inequalities that people with learning disabilities face. Research from the Centre found that the difference in median age of death between people with a learning disability (aged 4 and over) and the general population is 23 years for men and 27 years for women.
Projects led by academics in the Centre have also drawn attention to inequalities parents with learning disabilities face, including being more likely to have their children removed from their care compared to other parents whilst not receiving adequate support with parenting. In collaboration with disabled people, research from the Centre is also highlighting how services for people with learning disabilities can improve.
In this blog, I describe three projects carried out by academics in the Norah Fry Centre for Disability Studies, explain how this research is contributing to improved outcomes for people with learning disabilities and summarise what we can learn from Norah Fry researchers about tackling inequalities through research.
Addressing premature mortality
Research from academics at Norah Fry is helping to reduce premature mortality and health inequalities for people with learning disabilities. Led by the University of Bristol and Professor Pauline Heslop between 2015-2021, the national Learning Disabilities Mortality Review (LeDeR) supported local areas to review the deaths of people with learning disabilities and to take learning from those deaths to improve services.
This programme is the first of its kind. It was established after the Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD), led by Professor Heslop, provided evidence that people with learning difficulties are significantly more likely to die at a younger age compared to the general population and do not receive the same quality of care as people without a learning disability.
The University of Bristol’s involvement in the LeDeR programme came to a planned end in May 2021, but the work undertaken by Professor Heslop and other researchers from the University will have a lasting impact. For instance, with support from the University of Bristol, the LeDeR programme established a central point where all deaths of people with learning disabilities are notified. This central point will continue to be used.
During the contracted period with the University of Bristol, the project also analysed core data from local reviewers and produced national annual reports which highlighted key trends. Alongside other achievements of the LeDeR programme, key learning from this research supports improvements in the quality of health and social care services for people with learning disabilities.
NHS England will continue with LeDeR. After reflecting on the programme when their contract with the University of Bristol came to a planned end, they published a revised LeDeR policy which incorporates a review process that will include reviewing the deaths of people with autism.
Supporting parents with learning difficulties
Research in the Centre is also helping to support parents with learning difficulties/disabilities. Parents with learning disabilities are overrepresented in the child protection system largely because of concerns regarding neglect. Reports suggest that professionals do not have adequate time, skills and support to work with parents with learning disabilities and provide them with the help that they need.
In collaboration with groups of parents, Beth Tarleton led research to investigate what good support for parents with learning difficulties looked like in three local authorities. The project used the term ‘learning difficulties’ rather than ‘disabilities’ to refer to parents with learning disabilities and those who do not meet the threshold to receive support, but struggle with everyday life and protecting the welfare of their children.
The project explored local authority sites that had been identified as ‘successful practice’ by Working Together with Parents Network which supports professionals who work with parents with learning disabilities.
Based on their research, the project team made key recommendations regarding support for parents with learning disabilities, including:
- The need for professional support to be both consistent and flexible. Parents learning difficulties are life-long. Therefore, their support needs and circumstances may change over time.
- Practitioners should build and maintain mutually trusting relationships with parents. This would help to avoid repeated crisis-driven interventions and make sure that ongoing light-touch support can be provided.
This project took a collaborative approach. Input from two advisory groups (one professional advisory group and one parent advisory group) was invaluable for making the research relevant and accessible to parents with learning disabilities. Both groups guided the approach to working with parents. The parent advisory group collaborated with researchers to produce a video to make findings accessible to others with learning difficulties.
Access to housing
Work from researchers in the Norah Fry Centre for Disability Studies is helping to improve people with learning disabilities’ access to housing. In collaboration with Deborah Quilgars from the University of York and The NIHR School for Social Care Research, academics from Norah Fry are working to understand the ways that people with learning disabilities can be better supported to access their own tenancies, when this is their choice.
The project involves a review of housing for people with mild to moderate learning disabilities, including what tenancy options are available to people with learning disabilities who are on the edge of social care. Detailed interviews will also take place with people with learning disabilities who are living in social housing and private rented tenancies, as well as their families and other people who support them.
This project is being co-produced with a steering group made up of people with learning disabilities. As with other projects in the Centre, guidance from people with lived experience has been invaluable to developing an inclusive approach to research. For instance, the steering group highlighted that advertising for research participants should explicitly request participants from black and minority ethnic backgrounds to avoid studies only listening to the voices of white people with learning disabilities.
Prompts like this from people with lived experience are important for maximising inclusivity and taking an intersectional approach that acknowledges how different social justice issues; for example, disability discrimination and racism) cross over with one another.
Research tackling inequalities
Projects in the Norah Fry Centre for Disability Studies highlights how research can contribute to addressing inequalities faced by people with learning disabilities and also draws attention to the need for:
- Co-production: working with people with learning disabilities to research the inequalities they face helps to make research inclusive and relevant.
- An intersectional approach: acknowledging how different aspects of a person’s identity (e.g. disability, gender, ethnicity) combine to create different forms of discrimination or privilege is important for addressing the inequalities different people with learning disabilities experience.
As demonstrated by projects in Norah Fry, research using these approaches can play an integral role in highlighting, and developing ways to tackle, the stark inequalities faced by people with learning disabilities.
