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Case study: New evidence-based model provides framework to support people with learning disabilities

With funding from the NIHR School for Social Care Research, researchers at the University of Kent have developed a new approach to preventing challenging behaviour among people with learning disabilities in residential settings. The award-winning model significantly improved social care for people with learning disabilities, providing a framework for the way providers should support people with learning disabilities.

Challenging behaviour puts individuals and staff at risk of harm

People with learning disabilities sometimes display ‘challenging behaviour’ when unable to communicate their needs and feelings. The behaviour can be aggressive, destructive or cause injury to themselves or the staff caring for them. 

Approximately 50,000 working age adults with learning disabilities are living in supported residential settings, at a cost of more than £3 billion per year. These settings help people keep their independence while receiving support for day-to-day living. 

Of these adults, approximately 5 to 15% may display challenging behaviour that social care staff can find difficult to manage. As a result, they are more likely to be physically restrained and sometimes moved from their supported residential settings to more costly specialist care facilities. These outcomes can reduce a person’s quality of life.

Challenging behaviour has many causes but is often a way for someone with limited communication skills to react to and control what happens to them. It can be related to their environment, quantity and quality of social interaction, lack of choice and many other aspects of peoples’ support. Effectively managing challenging behaviour often requires improvement in social care arrangements and standards, but there has been limited research into the impact of improving the quality of social care.

Putting positive behavioural support into practice

With funding from the NIHR School for Social Care Research, researchers at the University of Kent have developed a new approach to preventing challenging behaviour among people with learning disabilities in residential settings. The team used an established strategy called positive behaviour support (PBS) to improve the quality of social care and prevent challenging behaviour rather than attempt to treat it after it occurred. 

PBS is a framework used to understand the reasons for challenging behaviour and then create a system of support that better meets individual needs. PBS draws on a range of evidence-based approaches endorsed by NICE guidelines.

The research project involved a collaboration between Professor Peter McGill, Professor of Clinical Psychology of Learning Disability, and Dimensions, a not-for-profit organisation supporting 3,000 people with learning disabilities to live in supported residential settings around the UK. 

The intervention was developed from quality improvement methods used in other settings, such as schools, using a setting-wide PBS (SWPBS) approach. The research team worked alongside the people being supported, their families and support staff to create a new model of social care support.

Twenty four residential settings, each supporting 1–8 people with learning disabilities, were randomly allocated to test the experimental model or to a control group. After seeing how each home within the experimental group met eight key standards for high quality social care, such as opportunities for choice and activities, the researchers supported improvements with staff training, monitoring progress and feedback. Settings within the control group continued with their usual practices.

Over 8–11 months, challenging behaviour in the experimental group was reduced by two thirds. A more than 50% reduction remained 12–18 months after the intervention ended. In contrast there was no significant change within the control group. 

The experimental model significantly improved the quality of social care, particularly in relation to activities, management, staff and health, and improved quality of life for people being supported (measured by their engagement in meaningful activities). Two thirds of staff in experimental settings rated the intervention positively, with many gaining new skills and a better quality of working life. The encouraging results have been published in Research in Developmental Disabilities.

Following the positive results of the research, Dimensions adapted the experimental model into a new method of support for widespread implementation, named Activate. Dimensions then invested £1.3 million into a 3-year implementation process and has now extended Activate across their 800 residential settings. 

“Research in social care is vital to improving the lives of people with learning disabilities. Sometimes, however, important research does not lead to any change in practice,” said Professor McGill. “The outcomes of this project were particularly encouraging in that they were immediately used by the social care provider to develop a new model of support – Activate – that Dimensions has subsequently implemented widely.”

Kelsey has mild learning disabilities and lives in supported accommodation with one other woman. One of Kelsey’s goals was to have more independence and move into her own home. Over a 7-month period of monthly reviews and regular active support from staff, Kelsey has gained a number of skills and can now cook meals, clean and make telephone calls unsupported, working towards finding a suitable property as well as maintaining relationships with her boyfriend and family. 

Activate has helped me do all the different things that I want to be able to do. It makes me able to be more confident.

Jackie, a performance coach at Dimensions, helps staff and people supported by Dimensions to implement the Activate model. “It’s really satisfying to see the results of the model being used correctly,” she said. “It gives everyone a common goal to work towards, which was lacking before Activate. The team can review a person’s record, record their experiences and achievements and give steps for people to move forward with to achieve their goals.

The model supports the development of managers and their teams to achieve their own professional goals, which helps improve the quality of the service delivered to the people they are supporting, as well as their quality of life.

Prevention through intervention

The NHS Long Term Plan in England highlights learning disabilities as one of the health service’s top priorities. In one of few randomised controlled trials in this field of social care research, Professor McGill and his team have successfully shown that the SWPBS model improves social care for people with learning disabilities, providing a framework for the way providers should support people with learning disabilities. 

The research confirmed that some challenging behaviour can be prevented by fairly simple interventions. The subsequent improvements in quality of life and staff job satisfaction indicate that future research on challenging behaviour should continue to investigate its prevention through intervention within social support systems. 

The Activate model was recognised early in its development when it won the Third Sector Care Award in the Innovative Quality Outcomes category in 2015. The award hailed it as “a break with tradition; achieving quality outcomes rather than outputs that make a difference to the lives of people using services”. 

“Activate is a great approach to supporting people with learning disabilities and autism,” said Rachael Dodgson, Managing Director of Dimensions. “Its power comes from applying different areas of best practice – positive behaviour support, active support and periodic service reviews – to eight ‘domains’ (such as healthcare and friendships) that together help us support people to give new shape to their lives.”

I know from observing practice and speaking with countless people we support, families and colleagues that, precisely in line with our vision, Activate is a cornerstone of how Dimensions is now delivering better lives for more people.

Further research is ongoing, and other organisations in the sector have expressed an interest in implementing the model. 

Setting-wide models such as Activate are not cheap options. They require widespread organisational development to deliver the leadership, training, support and monitoring that are required. They offer great benefits, however, particularly in terms of substantially improved quality of life for those supported and better quality of working life for staff. Such benefits are no less than people with learning disabilities and their carers deserve and have a right to expect.

Further reading

Read about the project on the NIHR School for Social Care website.

Read more making a difference stories.