Cumbria, Northumberland, Tyne and Wear’s innovative approach to supporting young people who display behaviours that challenge

The CNTW Intensive Positive Behaviour Support (IPBS) pathway was developed following a national drive to prevent inpatient admissions for children and young people with a learning disability through the national NHS-Led Provider Collaboratives programme. The service was funded through savings made following the closure of a learning disability inpatient unit.

Working collaboratively with children, young people and their families is a key component of the IPBS pathway. This includes working with young people to build a relationship and seek their views about what is important to them. The IPBS team works with young people in all settings to develop relationships and understand the goals of the young person and their family. This case study demonstrates how working closely with young people in the community and providing needs informed care can transform a young person and their family’s life.

Lauren’s Story

About Lauren

Lauren is a 14 year old girl who likes football, listening to music, dancing and going to the cinema or out for meals with friends and family. She is talented at singing and loves to perform songs for others.

Lauren was referred to the IPBS team to prevent an inpatient admission following a difficult period. This was evidenced by an increase in the frequency and severity of behaviours which can be challenging to others. Lauren’s mum was particularly finding it difficult to manage Lauren’s behaviours safely at home and out in the community. Lauren was attending school and access to a planned short breaks service with additional temporary nights being used to support the family prior to and during IPBS involvement.

Lauren had a brief Positive Behaviour Support (PBS) assessment 4 years ago and from this, a behaviour support plan was developed. Lauren was also diagnosed with Autism Spectrum Disorder (ASD) following a social communication assessment. A further assessment of Lauren’s needs and the functions of behaviours that challenge was requested, so the IPBS team started working with Lauren and her family as soon as she was referred.

Goals

Once IPBS staff had developed a relationship with Lauren, she was able to tell them what was most important to her, which was her family and relationships with others such as her friends and the staff at the short breaks service. Lauren also identified her likes and dislikes which was useful in the team’s assessment.

Lauren’s mum wanted consistency for Lauren across settings and for Lauren to develop skills for independence such as coping skills for managing her anxiety. Like many parents, Lauren’s mum wanted to understand Lauren’s behaviours. Additionally, Lauren had difficulties with sleep and mum wanted Lauren’s sleep to be assessed and improved.

Supporting Lauren

The IBPS team worked in all the places that Lauren went to including school and the short breaks service. In the initial stages of the IPBS pathway, behavioural assessments were completed with everyone that worked with Lauren and the IPBS team spent time completing observations in all environments.

Supporting Lauren’s mum

Another key aspect was working with Lauren’s mum in Positive Family Intervention (PFI) sessions. This helped her to develop her understanding of PBS, and, using Cognitive Behaviour Therapy to explore her own thoughts, feelings and responses to Lauren’s behaviours that challenge. Through these sessions strategies were developed that Lauren’s mum could use to help Lauren.

Developing needs informed support

Following IPBS assessment, a behaviour support plan was developed that aimed to provide consistency for Lauren across all environments. The IPBS Assessment had found that Lauren displayed behaviours that challenge in order to get a range of different needs met, but that predominately this happened when her environment was unpredictable which made her feel anxious. Other therapies such as speech and language therapy, occupational therapy and psychology were included under the PBS framework to support the development of strategies and skills. This included visual supports in all environments, help with Lauren’s sleep routine and emotional literacy work.

Looking to the future

Following completing the pathway, the frequency and severity of Lauren’s behaviours that challenge has reduced, but importantly Lauren has developed new skills to help her cope. Lauren’s mum also reports feeling less worried and has a better understanding of Lauren’s behaviour and how it links to her needs. Lauren also now has strategies in place to help her own well-being. Furthermore, the family feel safer when they are out and about, which reduces mum’s stress and worry and means they have achieved their shared goal of visiting family and friends. This has, in turn, improved the quality of life of Lauren and her mum.