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Challenging the Idea of Challenging Behaviours

The way ahead for people with learning disabilities is to challenge the idea of challenging behaviours.

Dr Louise Denne, CEDAR, Warwick

My research is dedicated to improving understandings about Positive Behavioural Support (PBS) for people with learning disabilities and enhancing its delivery. Building on decades of academic work, my project aims to ensure this demographic gains the most effective and impactful support possible throughout their lives, by focusing on practical solutions to structural problems which too often fail people and their families.

PBS provides a framework of support for people with learning disabilities over their lifespan. A distinctive feature of PBS is that it provides a way of understanding what the medical world terms “behaviours that challenge”, which means behaviours that may put someone or others at risk or harm or may result in them being excluded from day-to-day activities. People with learning disabilities are particularly at risk of developing these.

I experienced the positive impact of PBS first hand and understand how life changing the right help can be. Before starting my studies, I volunteered to work with an autistic child who was supported with a programme of Early Intensive Behavioural Intervention. What struck me immediately was how effective this support was; it taught him skills through a tailored approach that matched his needs and in doing so, it changed the quality of his and his parents’ life.

Despite this positive impact, PBS is not routinely available in practice. There are several factors that contribute to this, including a lack of clear policy guidance, of a high-quality workforce and the absence of infrastructure to support service delivery.

Of course, it is the people with learning disabilities who suffer the most from these structural flaws. Over recent years many scandals have consequently unfolded, such as Winterbourne View, in which the BBC Panorama programme highlighted “shocking” abuse of residents with learning disabilities.

To help prevent this from happening in the future, through my research in the Centre for Educational Development, Appraisal and Research (CEDAR) our team underwent three strands of work. Firstly, we collated existing understandings of best practice in supporting people with learning disabilities, with the aim to identify clear gaps in research. Secondly, we brought together a team of experts from across the UK, including academics and practitioners, to identify the practices required to deliver PBS effectively. Finally, we underwent a broader exploration of implementation science and ways of influencing policy and practice.

The group of experts brought together has formed a blueprint for an innovative way of working in the care sector. They meet on many occasions to discuss the gaps in research my project identified and, in 2015, they decided to publish the PBS Competence Framework to help fill these and support care providers.

In addition, the group has also produced several resources designed to help stakeholders, including family carers, put the competence framework into practice. Of course, these stakeholders were involved in the drafting and creation of each resource, to ensure they serve target audiences as well as possible.

We find collaboration and co-production is important because it increases the likelihood of resources being accepted amongst stakeholders for whom they are being produced. Additionally, collaboration also reassures other interested stakeholders that resources reflect external expertise and evidence-based practice.

This impact has been achieved despite several challenges my team and I faced throughout the research process, including juggling multiple agencies with the delivery of support across health, education and social care. We were also trying to bring about systems of change within the legislative and regulatory frameworks in the backdrop of austerity post 2010 and, more recently, the impact of the COVID-19 pandemic, which disproportionally impacted people with learning disabilities.

Despite these challenges, I continue to pursue my research because I believe this area of study is very important. Everyone should have access to the best quality of life and should be able to choose how and where they live, with whom, and how to spend their days. My research helps make this a reality. Today, the experience of people with learning disabilities and their families too often falls far short of this. I want to help change this.

The University of Warwick has been a compelling, motivational and supportive environment for my research projects. I decided to join my department because of Professor Richard Hastings, one of the leading researchers in intellectual disabilities worldwide, who has become my mentor and friend. He has pulled together a team of people with shared values and it is a privilege to be a part of that. I’m proud of our research and am dedicated to continuing to solve the obstacles current care providers face to delivering the very best for vulnerable patients.

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