As a nation, we are on a journey from sub-standard institutionalised care toward positive community-based support for people with behaviours that challenge. Almost a decade on from the Winterbourne View scandal, we are still seeking the most appropriate ways to care for, nurture, and aid the development of these most vulnerable members of our society.
A 2017 report by Mencap and the Challenging Behaviour Foundation found that over 2,100 people with a learning disability and/or autism are still locked away in inpatient units, despite significant investment, and ongoing Government and NHS England programmes to provide people with the right support in the community.
The children of today are the adults of tomorrow. Providing appropriate support in the community for children who present with challenging behaviour is a logical step toward tackling our reliance on institutional care; but taking this step will require the adoption of a more person-centred approach.
The term ‘challenging behaviour’ was introduced in the mid-1980s in the context of large-scale deinstitutionalisation. The switch to describing behaviour as challenging rather than problematic or inappropriate was driven partly by the need for a more respectful vocabulary, but the main aims were to:
· Focus attention on the challenges services might face when supporting people with complex behavioural support needs to live rich and fulfilling lives in the community.
· Remind us that behaviour is what we do, and what we do is a product of our prior learning and how we interact with our environment.
· And that no one should be defined entirely in terms of his or her behaviour, using highly inappropriate terms such as ‘head banger’ or ‘attention seeker’.
Challenging behaviour is not a diagnostic category, however. Its definition depends on the experience of the person and others affected by the individual’s behaviour as well as the ability of services to respond constructively to the person’s needs for support.
This reframing of context and terminology is a relevant and vital reminder of the importance of a personalised approach for people working in social care and the SEND sector today.
At Abbey School for Exceptional Children in Chester, we utilise an approach called Positive Behavioural Support (PBS) to help children who present with challenging behaviour or behaviour of concern.
Positive Behavioural Support is a framework of components designed to enable and empower young people to develop, grow, and adapt their behaviour to changing circumstances. The approach is ethically grounded, and evidence based. It blends person-centred values with empirically validated concepts and procedures derived from Applied Behaviour Analysis and other related fields.
PBS has frameworks for assessing, promoting, and evaluating behaviour change in ways that are respectful and culturally sensitive. Enrichment and nurturance, combined with focused support for behaviour change, help children and young people develop the skills and abilities they need to prosper. This stands in stark contrast to approaches that focus solely on managing or eliminating unwanted behaviour.
The values in PBS were first articulated in normalisation theory, person-centred thinking, and the inclusion movement. Normalisation sought to understand how western societies had come to devalue certain social groupings. It proposed ways of encouraging the valuing of differentness and diversity and of helping devalued persons into a range of socially valued roles.
Person-centred thinking and the inclusion movement emerged from within a normalisation community of practice as ways of giving practical expression to the values inherent in the theory. Being person-centred places each person at the centre of his or her life in the pursuit of a joint understanding of that person’s journey and his or her aspirations for the future. Inclusion reverses the tendency for people at risk of being devalued to be physically and socially excluded from mainstream society.
Normalisation, person-centred approaches, and the inclusion movement provide us with ways of thinking about what is important – they help us know what is worth changing and how best change can be made. Our values make us think about both the means and the ends of behaviour change. We choose procedures that are the most effective and least restrictive possible, that add to what a person can already do, and that include the person and others as decision-makers in the process.
A core principle in behaviour analysis is that all behaviour occurs for a reason, and challenging behaviour is no different – it occurs because it serves an important function for the individual in a specific environmental context. Contexts commonly associated with challenging behaviour are the physical environment, the social setting, instructional demand, access to things, physical or emotional pain, and speaking and listening to one’s self.
Understanding the function behaviour serves (for a specific person in a specific context) is a person-centred approach that has been shown to help us know what to change and how. Because human behaviour is complex, making a change usually means making many changes - in the environment and with the person. There is a compelling logic, of course, to starting this work early in life – with our children.
In PBS reducing challenging behaviour represents one way of enhancing quality of life. Enhancing quality of life lowers the risk of challenging behaviour. Enhancing quality of life is, therefore, both an intervention and an outcome.
Professor Sandy Toogood BEM is head of clinical and behavioural services at Abbey School for Exceptional Children and honorary professor at Bangor University College of Human Science