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.

 

 

 

Changing Horizons: research about people with learning disabilities who have experience of the criminal justice system

This summary was prepared by the authors of the ‘Changing Horizons’ report: Val Williams, Victoria Mason and Paul Swift, together with Charlotte Hicks from Guideposts Trust.

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It is estimated that between 20-30% of offenders who enter the criminal justice system have a ‘learning disability’. In 2005, a Benjamin Meaker fellow, Professor Susan Hayes, visited Norah Fry Research Centre, and her research in a large UK prison (Hayes et al., 2007) lent weight to the concerns about people with learning disabilities in prison. Since then, there has been other important research to start to examine the needs of this group of offenders (Loucks, 2007), but very little in-depth work to understand the experiences of the criminal justice system (CJS) from the point of view of people with learning disabilities themselves.

Staff at Norah Fry Research Centre were therefore very pleased to be able to carry out a piece of research for Guideposts Trust in 2013-14, in order to inform their training project for this group of people. The study worked in two ways. Firstly a small group of people who had past experience of offending formed an advisory panel for the project. They helped the research team to focus on particular themes that had been important to them, and told us for instance about the way in which people can get pulled into crime by a wish to identify with a peer group, or with ‘friends’. The main motivation for crime seemed often to be a basic isolation and loneliness in people’s lives. Secondly, the research team carried out interviews with ten individuals across the South-West, all of whom had some experience of police custody, being arrested or cautioned, or going to court. We wanted to hear these people’s stories, on their own terms, and their interviews were re-drafted into narratives, which they then read through and checked.

The first striking finding in this small study was that ‘offenders with learning disabilities’ can and do want to take positive action, to support others, identify solutions for themselves, and help research to improve the system.  Several of the people we met were involved in peer support organisations, taking part as active citizens and making many useful suggestions for training the police force and others involved in the CJS. Although people often mistrusted the police, many had good experiences of individual officers and of other professionals. These were people who became known to them as individuals, and whom they grew to trust.

Problems with close relationships were often at the root of the criminal behaviour in which people engaged, and some of this was associated with the experience of being a victim (e.g. of hate crime or harassment). In some senses, these people’s identity morphed between victimhood and criminality, and one could see that these were two sides of the same coin. Some of the problems they faced in the CJS were related to not being recognised as ‘disabled’; identification at an early stage was clearly important, although for some, this was problematic – since they did not necessarily see themselves as disabled.  However, the provision of accessible information and clear communication would arguably be of benefit to all prisoners. Our previous research (Swift et al., 2013) confirmed the difficulties of access to legal advice for all people with learning disabilities, and complex information was certainly one of the issues that emerged from the negative, confused experiences of several of our participants.

The recommendations we made from the present study focused largely on early identification, and in fact prevention, of criminal activity amongst this group. Those with poor socio-economic circumstances and lacking the social capital of family or close friends were particularly at risk. They should be offered the protection of the 2005 Mental Capacity Act, and the protection afforded by safeguarding procedures, together with more information and training to help them avoid the dangers of offending behaviour. At the other end of the system, however, those who have been in the CJS need sensitive support to rebuild their lives. In particular, this research highlighted the potential of self-advocacy groups to be sources of support to people who have been in trouble with the law.

 

We are grateful to the Guideposts Trust for supporting this research study, but would particularly like to thank the participants with learning disabilities who took part in the research. We hope that they will have a chance to continue rebuilding their own lives and support the lives of others.

 

References

Hayes, S., Shackell, P., Mottram, P., and Lancaster, R. (2007). The prevalence of intellectual disability in a major UK prison. British Journal of Learning Disabilities. 35, pp.162-167

Loucks, N. (2007) NO ONE KNOWS. Offenders with learning difficulties and learning disabilities. The prevalence and associated needs of offenders with learning difficulties and learning disabilities. London: The Prison Reform Trust.

Swift, P., Johnson, K., Mason, V., Shiyyab, N., and Porter, S. (2013) What happens when people with learning disabilities need advice about the law? Bristol: Norah Fry Research Centre.