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Published: Sunday, 6th November 2016

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Firm foundations

Jacqui Shurlock looks at how to provide the right support for children with learning disabilities whose behaviours challenge

In 2011, Panorama exposed the abuse of vulnerable adults at Winterbourne View hospital. Ever since, the use of inpatient settings for people with learning disabilities who display challenging behaviour has been widely criticised. A recent report by NHS England, Building the Right Support, sets out an action plan to develop better community services and start closing down these units.

But there is another question we should now be asking: what about building the right support for people from day one, so that they never get to crisis point in the first place? 

The post-Winterbourne View work has focused primarily on adults. But it’s worth remembering that receiving the wrong support during childhood can set individuals with complex additional support needs on the wrong path from early on in their life. Schools, families, professionals and commissioners all have a role to play in ensuring that children with learning disabilities go on to enjoy the fulfilling adult lives to which they are entitled.

The first thing to realise is that children with learning disabilities, particularly those with severe learning disabilities, are much more likely to develop behaviours that challenge than their peers. These behaviours may include aggression, destruction, self-injury and other dangerous or high-risk behaviours, such as running away.

The second thing to realise is that understanding the cause of challenging behaviours is key. When you understand the function of a child’s behaviour (whether it is to escape a noisy room, to try to communicate an unmet need such as thirst or pain, or to express anxiety or concern) it is possible to find other ways to meet that need. As Professor Peter McGill says, “Children without learning disabilities display challenging behaviour during the ‘terrible twos’, but then develop communication and social skills which enable them to get what they want and need. Many children with learning disabilities do not develop these skills and are left with the same needs as other children but are much less able to get them met.”

Vulnerable children

According to figures published in the 2015 Learning Disability Census, last year 165 children with a learning disability were living in inpatient units. Many other children with learning disabilities were experiencing greater risk than their peers of social exclusion, institutionalisation, deprivation, physical harm, abuse and misdiagnosis.

The path which leads to these distressing and expensive outcomes is now well-trodden. Its steps are familiar to parents up and down the country: 

· a lack, or complete absence, of local behaviour support when their child is small 

· stress and emotional challenge for the whole family over many years 

· the child being sent to live in high cost services, often far from home 

· the child transitioning into an adult life that is restricted and doesn’t offer them the same life opportunities enjoyed by everybody else.

In addition, substantially more children than this are boarding in residential special schools, many of which are located in a different local authority area to the child’s home.

Fortunately, a path to better outcomes exists too. Evidence-based early intervention, delivered locally, has the potential to reduce challenging behaviour and to improve wellbeing. Though early intervention remains far from a universal reality in the UK today, we now know the kind of interventions and steps that need to be put in place from early on in the child’s life. These steps include:

  1. establishing a person-centred approach, right from the start, supported by a key worker and a team around the child
  2. identifying problems early and responding rapidly using an integrated, multi-disciplinary approach to ensure all needs are met
  3. providing evidence-based parenting programmes to help parents to support their child
  4. establishing a local positive behavioural support service, working across homes and school
  5. developing a local approach to crisis prevention so children can stay nearby if there is a crisis.

The fourth step on the list, in particular, suggests how different groups of people, including teachers and schools, can work in partnership with parents and professionals to lead children down this path to better outcomes. This is achieved by everyone involved learning how to understand the cause or function of behaviour and then responding accordingly. As Professor Eric Emerson says: “There is strong evidence that some of the key factors causing challenging behaviour can be changed, and when changed can lead to marked reductions in challenging behaviour.” 

Effective collaboration

Evidence-based early intervention is crucial. A case study developed by the Paving the Way project illustrates the benefits of a support service working across homes and school. Bristol Positive Behaviour Support Service (PBSS) supports children and young people with learning disabilities and behaviour described as challenging, who are at high risk of a breakdown of their school placement.

The first step is an initial assessment. Once the PBSS team have identified the child and family’s needs and the functions (meaning) of the behaviours of concern, they design an intervention programme. The programme aims to develop new skills which will allow the child greater independence, social participation and quality of life, and decrease challenging behaviours. Where possible, the PBSS team supports children in the classroom alongside their peers while implementing the intervention. They can also provide training and supervision to staff or family members to help them support the child consistently.

As a result of the team’s support, all 12 children supported over five years in the case study learned new skills and made developmental progress, usually in relation to communication. The PBSS enabled ten of the 12 children to stay permanently in their local school, whilst the other two children stayed for longer than had been expected.

Teachers have a huge amount to contend with, and many people teaching or supporting children with learning disabilities will not have experience of PBS. I would like to see much more support and training for those supporting children with learning disabilities whose behaviours challenge, so they are able to help deliver the best possible outcomes for the children in their school. It is essential that teachers and staff are properly trained, supported and supervised to deal with behaviours that challenge when they do arise. 

Five years on from Winterbourne View, we are still waiting for national guidance on reducing restrictive physical interventions with children (equivalent guidance exists for adults). This is in spite of evidence of over-reliance on restrictive interventions in learning disability services and in mental health services, and anecdotal evidence of restrictive interventions used regularly within some schools. Guidance is promised soon, but in the meantime school staff and others are unclear about what is acceptable and what is not.

Early intervention also has the potential to deliver significant financial savings in the long-term. A financial review of the PBSS in Bristol calculated that, over four years, the PBSS produced savings of £1.8 million. In an era of budget cuts, high-cost out-of-area services that often deliver poorer outcomes for children are making less sense now than they ever did.

Of course, the significant monetary cost of our current way of doing things is dwarfed by the price paid by the children themselves – a price which too often includes restrictive interventions and being stuck on a trajectory towards a restricted adult life. Evidence-based early intervention has the potential to reduce challenging behaviour and facilitate better outcomes for children and their families. Studying what works, learning from families and sharing the knowledge are the first steps on that path. 

Further information Jacqui Shurlock is the manager of Paving the Way, a joint project between the Challenging Behaviour Foundation and the Council for Disabled Children:
www.pavingtheway.works

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