Learning disabilities and behaviour that challenges: service design and delivery

Background

An estimated 1.2 million children, young people and adults in England have a learning disability, and of these it is estimated that 10–17% display behaviour that challenges (see Predictors, costs and characteristics of out of area placement for people with intellectual disability and challenging behaviour. Allen et al. 2007). A more recent report suggested that there are over 40,000 children with learning disabilities who display behaviour that challenges (see Estimating the number of children with learning disabilities in England whose behaviour challenges. Emerson et al. 2014). In addition, approximately 1% of the adult population has an autism spectrum condition and 60–70% of these also have a learning disability (see Estimating the prevalence of autism spectrum conditions in adults Brugha et al. 2012).

The most commonly used definition of behaviour that challenges is: 'behaviour of such an intensity, frequency or duration that the physical safety of the person or others is likely to be placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to and use of ordinary community facilities' (Emerson et al. 1987). Later definitions have highlighted the role of cultural context in determining whether behaviour is perceived as challenging (Emerson 1995).

This guideline was developed in a context of changes to policy and practice for children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges. The support needs of these vulnerable groups were set out in 1992 in the Mansell report, which identified the need to invest in developing local services with appropriate levels of skilled staff to meet people's needs. This was restated in a later review, the so‑called 'Mansell 2 report' (see Services for people with learning disabilities and challenging behaviour or mental health needs. Department of Health), which also highlighted the increased use of placements away from people's homes.

The exposure of widespread abuse at Winterbourne View hospital in 2011 led to a review of care provided in this hospital, and across England more widely, for people with a learning disability and behaviour that challenges. The resulting report (see Transforming care: a national response to Winterbourne View hospital. Department of Health) started a programme of work to improve services for people with a learning disability or autism who also have mental health conditions or behaviours described as challenging. In particular, this aimed to shift emphasis from inpatient care in mental health hospitals towards care based on people's individual needs and wishes and those of their families, provided by general and specialist services in the community. The programme did not meet its original targets, as highlighted in a report by the National Audit Office (see Care services for people with learning disabilities and challenging behaviour), and was reconfigured in 2015.

The 'transforming care programme' is now led jointly by NHS England, the Association of Directors of Adult Social Services, the Care Quality Commission, Local Government Association, Health Education England and the Department of Health. The national plan (see Building the right support. 2015) included plans for 48 'transforming care partnerships' to pilot new arrangements of services. The national plan was followed by NHS England's national service model (October 2015) that set out the range of support that should be in place no later than March 2019. To support implementation of the interim service model, NHS England developed 3 model service specifications (see Transforming Care: service model specification. January 2017) and supplementary guidance on Developing support and services for children and young people with a learning disability, autism or both (September 2017). This guidance also supports the recommendations of Dame Christine Lenehan's review (January 2017) on providing care and support for children and young people with complex needs who display challenging behaviour.

The aim of this guideline

This guideline takes into account the direction of travel in the transforming care programme. It complements this work by providing evidence-based recommendations to support children, young people and adults with a learning disability (or autism and a learning disability) and behaviour that challenges to live their lives in the community like everyone else.

It is based on evidence about effectiveness and cost effectiveness of different support and services, and how those services are coordinated. It is also informed by the views of people who use services and their families on what is important to them in their care and support.

What is the status of this guidance?

The application of the recommendations in this guideline is not mandatory. Although there is no legal obligation to implement our guidance, health and social care practitioners, and practitioners in related services, are actively encouraged to follow our recommendations to help them deliver the highest-quality care.

How does it relate to legal duties and other guidance?

This guideline complements statutory duties and good practice as set out in relevant legislation and guidance. The recommendations cross-refer to legislation and other guidance where appropriate. Relevant legislation and guidance includes:

How has it been developed?

The guideline has been developed by a committee of people who use services; family members and carers of children, young people and adults with a learning disability who display behaviour that challenges; and professionals. It has used information from an extensive review of research evidence, and from expert witnesses. The development followed the methods outlined in developing NICE guidelines: the manual and the interim methods guide for developing service guidance (2014).

Equality and diversity issues have been considered throughout the development of the guideline. The committee also gave careful consideration to the potential resource impact of the recommendations.