Can research help to address inequalities faced by people with learning disabilities?

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 blogs looks at some of the ways what we research and how we go about it incorporates EDI principles.


In this blog, 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.

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 (e.g. 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:

  1. Co-production

Working with people with learning disabilities to research the inequalities they face helps to make research inclusive and relevant.

  1. 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.

 

 

 

Co-production and change for disabled people

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Val Williams discusses research around support for disabled people

Social practices can be enabling or disabling

Imagine you are the woman in this picture, a patient going to your doctor to talk about symptoms you’ve been having. The patient here is a disabled woman who is sitting directly in front of the doctor, with her personal assistant taking notes for her, out of the doctor’s direct line of sight. This might seem a trivial thing, but going to the doctor might not always work so well for some disabled people. The doctor might talk exclusively to their carer or to a family member, instead of engaging directly with them. Or of course, they may not have a third party to help them remember what has been said. All these things are important when you want to get good health care, and they may require just a few changes in the way things are routinely done. Kerrie Ford, in the picture above, set up this scene back in 2010 as part of a training pack arising from a research study about support practices, in which she was a researcher.

Although disabled people might traditionally be seen as part of the problem, they can find their own solutions. For instance, in our research about support practices, disabled people suggested and developed ways of getting their messages across, to shift practices and to enable them to challenge inequalities. Disabled people have their own movement, which is now a global one, and have banded together to re-define some of the problems that confront them, and to redress the power imbalances that they face when professionals, practitioners and medical authorities dictate what is best for them. The most pressing issues are to find better ways to understand how to change disabling practices, while we listen to and work with disabled people themselves.  Our new study is aiming to do just that.  ‘Tackling disabling practices: co-production and change’ has been funded by the Economic and Social Science Research Council (ESRC) which I lead at the Norah Fry Research Centre at Bristol. Disabled people’s organisations, represented by ‘Disability Rights UK’ (DRUK) are joining with us to explore the ways in which we can understand and theorise change, in a way that really makes a difference to disabled people’s lives, on their own terms.

Disabled people of all ages experience inequalities in society, in every part of their lives. There is strong evidence that disabled people are often amongst the poorest, as the recent poverty survey carried out at the University of Bristol has revealed and that they face abusive or inadequate support practices in everyday settings (Antaki et al., 2007).  Further Pauline Heslop and her team found that people with intellectual disabilities were dying prematurely, with men dying 13 years earlier than non-disabled men, and women some 20 years earlier. Health care is simply not adapting to meet the needs of all. In the UK, most of these problems are the subject of intensive investigation, resulting in legal and policy reform. For instance, in 2011, a Panorama television documentary exposed the abusive treatment being perpetrated against people with intellectual disabilities in an ‘assessment and treatment unit’.  Following this, that particular hospital was closed down and a Government Concordat was signed in 2012, which pledged a reduction in hospital placements for people with intellectual disabilities and ‘the closure of large-scale inpatient services’. Support was also provided for commissioners and practitioners in the form of workforce development, guidance and toolkits to ensure better practice. However, in 2014, a further report acknowledged that:

For decades people have argued for change and described what good care looks like, and how we can commission it….. but the problem remains. Why?  (Bubb, 2014: 17)

The conclusion in the 2014 report is that we do know ‘what good looks like’, and indeed we also know how to get there, but that it is simply too easy to ‘do the wrong thing’.  Yet again, a further series of recommendations ensued, which invoke the rights of disabled people and their families to better community services, along with a system for holding local authorities and other agencies to account.

Why then are some practices so difficult to shift?  Our new project starts in April 2015, and aims to interrogate the turn towards ‘practice’ in social science, in order to see what it can offer to our understanding of what is going on in practice and how the goings-on could be malleable, could be shifted, and maybe made more productive. We do not want to demonize those who are there to provide health and social care support. Indeed, we know that all of us could be inadvertently discriminating against disabled people by the way things are set up – even in our own Higher Education institutions. One of the strands of research in our new project is being led by Sheila Trahar in the Graduate School of Education, to explore the experience of disabled students, from their own point of view, while Sue Porter will lead on research about the experience of disabled academics. Other strands will be led by Beth Tarleton, building on the ‘Working Together with Parents Network’ working with Nadine Tilbury, Danielle Turney and Professor Elaine Farmer, to analyse how to achieve better support for parents with intellectual disabilities; by Pauline Heslop, who examines reasonable adjustments in healthcare provision; and by Val Williams and David Abbott, who build on the approach to micro-analysis of interaction (Williams, 2011) collecting videos and recordings of what goes on between support workers and disabled people. All our research work in this project is about how we can make a difference, and how we can theorise those changes in a way that is useful for social science and for disabled people themselves. Therefore Bernd Sass at Disability Rights UK is central to everything, and in the research strand based at DRUK will be taking forward the notion of ‘user-driven commissioning’ to see how disabled people’s own actions can have an effect on changing local authority and health care structures.

We are particularly pleased that our ESRC project is based on several partnerships. Not only is the DRUK a key partner, but the project will also include Professors Charles Antaki from Loughborough University, Celia Kitzinger from the University of York, Chris Hatton from the University of Lancaster, Alan Roulstone from Leeds, Dr Stanley Blue from Manchester, and Sue Turner from the National Development Team for Inclusion (NDTI), as well as Professor Andrew Sturdy from our own Department of Management at Bristol.  We are working with experts across the disciplines, who have different ways of conceiving of practice – from the high level policy and strategic decisions made by government, to the micro-detail of front-line support offered to disabled people. Instead of pointing fingers of blame at particular individuals or institutions, we want to find out more about how to understand social practices, so that we can enable them to change.

Val Williams is Reader in Disability, Policy and Practice in the Norah Fry Centre the School for Policy Studies

References

Antaki, C, Finlay, W.M.L., Jingree, T and Walton, C.(2007) “The staff are your friends”: conflicts between institutional discourse and practice. British Journal of Social Psychology, 46, 1-18.

Bubb, S. (2014) Winterbourne View – Time for Change. http://www.england.nhs.uk/wp-content/uploads/2014/11/transforming-commissioning-services.pdf

Heslop, P. et al. (2013) Confidential Inquiry into premature deaths of people with learning disabilities (CIPOLD): final report. http://www.bris.ac.uk/cipold/

Williams, V. (2011) Disability & Discourse: analysing inclusive conversations with people with intellectual disabilities. Wiley-Blackwell.