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Written evidence submitted by Challenging Behaviour Foundation
About the Challenging Behaviour Foundation
The Challenging Behaviour Foundation (CBF) is a national charity which supports children, young people and adults with a severe learning disability whose behaviour challenges, and their families. Someone with a severe learning disability will typically: have very little or no verbal speech, find it very difficult to learn new skills, and require life-long support. The CBF exists to demonstrate that individuals with severe learning disabilities can enjoy ordinary life opportunities when their behaviour is properly understood and appropriately supported.
It is estimated that there are 179,320 children with learning disabilities in schools.
Challenging behaviour refers to a range of behaviours which some people with severe learning disabilities may display to get their needs met. Behaviours may include, but are not limited to, hurting others, self-injury, destructive behaviours, or eating inedible objects. Research indicates that there are around 41,000 children with learning disabilities whose behaviours challenge, aged 0-18, in England.
Further information about the Challenging Behaviour Foundation can be found on our website. |
Executive summary
Provision for children with learning disabilities who display behaviours that challenge is very variable and often insufficient to meet children, young people and their family's needs. Effective joint working supports children and young people with learning disabilities to achieve their potential and prevents them from being excluded from local special needs schools and placed in costly out of area residential provision. There are well evidenced examples of good practice that demonstrate both positive outcomes and cost savings. Investing in early intervention and prevention gives children with learning disabilities the best start in life and in the medium to long term produces cost savings by reducing residential school placements, inpatient admissions and transport costs.
Q) What can be done to improve the effectiveness of multi-agency and joined up working across education, health and social care? How does SEND provision vary between local areas and what can be done to promote consistency of approach?
Q) What can be done to reduce the disproportionately high exclusion rates for students with SEND?
The three case studies below demonstrate the benefits and cost savings involved in providing community based intensive support for children with learning disabilities who display behaviours that challenge. Collaborative cross system working is a key component in all three case studies.
Case Study 1: Affinity Trust (private company commissioned by a local authority)
7-year-old ‘Jake’ (pseudonym) began receiving support from the Affinity Trust because of behaviours that challenge, including injuring members of his family and serious damage to the family home. Affinity Trust conducted a Functional Analysis to identify the reasons for Jake’s behaviour and co-produced a Positive Behaviour Support (PBS) plan with Jake’s family and school.
The PBS plan led to the following positive outcomes for Jake:
These positive outcomes enabled Jake to continue living with his family and prevented him from being sent into residential care. The Council that contracted with Affinity estimates that over the 10-years of their contact, costs to the Council will be reduced by at least £1.9m. The average cost per annum of the Affinity Trust’s PBS service is £52,000 per child. 90% of children and young people referred to the Affinity Trust have been able to remain at home and school, avoiding residential placements.
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Case Study 2: Ealing Intensive Therapeutic and Short Breaks Service (ITSBS)[1] - based within Ealing Service for Children with Additional Needs – joint service set up by West London NHS Trust and Ealing local authority
The ITSBS supports children and young people who have a learning disability and / or are autistic and are at risk of being moved to a residential placement.
Children who received support from the ITSBS showed a significant reduction in behaviours that challenge and were less likely to be admitted to residential placements. Family carers reported improved wellbeing for both their children and themselves. As of 2022, the ITSBS had provided support to 47 children. Out of the 47 supported up until 2022, only 8 were in residential placements. Between 2018 and 2022, no children who accessed the ITSBS were admitted to an inpatient bed.
Collaboration with London School of Economics to complete an economic evaluation of the service indicated even when accounting for additional costs of children remaining locally, Ealing ITSBS is significantly cheaper than placing children in residential schools. |
Case Study 3: Intensive Positive Behavioural Support Services (iPBS-LD) - Avon & Wiltshire Mental Health Partnership
iPBS-LD provides support to children with a learning disability and autistic children.
The service supports children who are at risk of home or school breakdown and works with the family and school to carry out a functional assessment and put in place an intervention programme based on this.
Over the first five years of the service, 12 children were supported to learn new skills and make developmental progress, particularly in the area of communication.
One child supported by the service, ‘John’ (10) was being secluded at school due to aggressive behaviours and was at risk of his placement breaking down. John was supported by the service to begin using a Picture Exchange Communication System (PECS) which enabled him to communicate independently. He was able to return to his classroom full-time in less than a year.
A financial review of the iPBS in Bristol calculated savings of £1.8m over four years. |
To read the case studies in full, please read the CBF’s Early Intervention report.
Services in England
At present, support for children with learning disabilities and/or whose behaviour challenges is a ‘postcode lottery’. A research study, MELD, mapped community-based services for children with learning disabilities who display behaviours that challenge in England. CBF analysis of the data identified that not all local areas have a service or pathway available for children with learning disabilities creating an inequality in access to support.
The case studies above represent a model of support described in the MELD study as “specialist services for behaviours that challenge”. The study found that nationally there were 27 specialist services. This means that most areas in the country do not have a service available for children with learning disabilities whose behaviour is placing them at high risk of exclusion from school and/or requiring residential care.
Safeguarding Evidence
A Child Safeguarding Practice Review Panel reviewed the experience of 108 children and young adults placed at three residential settings located in Doncaster operated by the Hesley group. 76% of the children had a learning disability and 82% were autistic. The panel found that “They were among the most vulnerable children in society, yet they experienced systematic and sustained physical abuse, emotional abuse and neglect”. (Phase 1 report, paragraph 1.2, pg.8)
Children were placed in the Hesley services by 55 local authorities. The panel found that the children were placed “in residential settings at a considerable distance from home, which increased their vulnerability and safeguarding risk.”
The panel found that half of the children did not require a residential placement, and this was the consequence of a lack of local support and services. Therefore, at present the state is spending money on out of area residential placements which deny children the right to a family life and increase children's vulnerability to abuse and neglect.
Exclusions
As seen from statistics from Public Health England, pupils with SEND are excluded from education far more frequently than pupils without SEND. Children with identified SEN who have an EHC Plan are more than three times more likely to be suspended than their typically developing peers. The most common reason for these suspensions and exclusions was behaviour.
Too often, behaviours that challenge displayed by children with learning disabilities are viewed as “misbehaviour” and met with sanctions rather than identifying the cause of behaviour e.g. an underlying physical or mental health need or the need to support the development of key skills which influence behaviour. Exclusions often occur because staff do not understand the reasons that children with SEND display behaviours that challenge and are not sufficiently trained in Positive Behaviour Support.
CBF view
Data published in 2014 shows that there were 1,360 children and young people with a learning disability in residential schools.
The CBF advocates that more specialist support services are required to improve joined up working, improve outcomes and reduce exclusions and expenditure on residential placements by supporting children and young people at an earlier stage.
The lack of consistency in service provision across the country leads to significant disparities in the level of support children and young people receive depending on where they live. There are several actions that can be taken to address this postcode lottery:
The key worker programme currently only applies to children and young people with learning disabilities, who are on the dynamic support register due to being an inpatient or being at risk of admission to inpatient services. The CBF would like to see the key worker pilot expanded to all children and young people with a learning disability, to intervene early and reduce the likelihood of them reaching crisis.
In order to ensure that these measures are working, there should be robust monitoring and accountability mechanisms to track the effectiveness of SEND provisions across different areas. Regular data collection and assessment can help to identify gaps and drive improvement.
Q) How can specialist provision, especially support for conditions which occur infrequently but give rise to the need to a high level of support and which may be beyond the capacity of individual local authorities, best be provided and commissioned?
The CBF agree with the approaches proposed in the two reports by the Child Safeguarding Practice Review Panel, focused on children with disabilities and complex health needs.
These propose that local authorities and ICBs should be required to jointly commission safe, sufficient and appropriate provisions for children with disabilities and complex health needs, which are aligned with local inclusion plans (Phase 2 report, Recommendation 3) and also recommends that the DfE, DHSC and NHS England should coordinate a support programme for commissioners in local authorities and ICBs, which focuses on improvements in forecasting, procurement and market shaping (Recommendation 4). At present there is a pilot taking place in two local areas. We believe that a commitment to a national multiagency delivery board including people with lived experience and a commitment to a funded national rollout are essential to prevent a re-occurrence of the systemic abuse of disabled children.
Q) What is working effectively within the current SEND system, and how can best practice be scaled up?
As outlined above, specialist behaviour support services are proving to be highly effective within the current SEND system. In addition to funding for set up and operational costs, a comprehensive workforce plan is needed to enable the effective scaling-up of existing good practice. This plan should focus on recruitment, training and the retention.
Q) How can innovation be encouraged across the system to address the current pressures and challenges?
Funding for innovative projects, tends to be available only for short periods of time, e.g., 1-3 years. Longer-term funding would improve the ability of services to attract and retain skilled staff and improve the viability of innovative services. Additionally, investing in professional development is necessary to ensure that staff are equipped with the latest knowledge and skills. Specific funding for training would therefore encourage innovation.
Q) What steps should be taken to improve the post-16 landscape for students with SEND?
In line with an action plan which has been co-produced by a wide range of people with learning disabilities, family carers, and professionals and organisations working across the system, we have several recommendations these include:
Q) What steps can local authorities take to ensure funding is in place to meet the transport needs of post-16 students with SEND?
The CBF believes that there are several steps local authorities can take in order to ensure that funding is in place to meet the transport needs of post-16 students with SEND.
Out of area residential placements
Local authorities should focus on reducing out-of-area residential care placements for young people with learning disabilities by investing in preventative support. This strategy would not only bring these individuals closer to their families and communities supporting their right to a family life and reducing their vulnerability to abuse and neglect, but also significantly reduced transportation costs. Phase 2 of the Hesley Report found that many children were placed far from home; the average distance being 95.16 miles, with 60% being placed more than 50 miles away. By minimising these distances, local authorities can reduce the financial burden of transportation and enhance the quality of life for these children and their families.
Local school placements
Young people with learning disabilities are more likely to travel further to attend school and college. Additionally, young people with a severe learning disability are unable to travel independently due to a lack of understanding of road safety, rendering school transport fundamental to access education.
Improving forecasting of local needs and the inclusiveness of special needs schools to cater for children who display behaviours that challenge would reduce transportation costs enabling more funding to be made available for post 16 learners.
Q) How can area SEND inspections of local authorities be more effective?
The CBF believe that SEND inspections of local authorities can be made more effective by utilising a similar model to the CQC’s Experts by Experience inspection model. CQC have found that having EbyEs involved has helped people with lived experience and their families to feel more comfortable in sharing views and concerns, therefore creating a more accurate picture of services.
As well as using an Expert by Experience model, it is crucial that the views of parents whose children are funded by the local authority but have been placed out of area due to a lack of local services, are considered. By listening to their feedback, inspectors can gain a more comprehensive understanding of the challenges faced by families and the gaps in service delivery.
Q) The role of other organisations such as the DFE, the LGO and the CQC in the accountability system
The CBF agrees with the approach recommended by the Child Practice Safeguarding Review Panel into the abuse and neglect of 108 children and young people who have a disability and complex health needs. Recommendation 9 includes “Take immediate steps to establish arrangements for joint inspection by OFSTED and CQC of residential settings for children with disabilities and complex health needs”. We understand that comprehensive plans were drawn up by CQC and Ofsted to establish joint inspection of residential settings but there is no commitment to implementation. Unless this recommendation is implemented there is a serious risk that there will be further systemic abuse of disabled children whilst in state funded residential school and other residential settings.
January 2025
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[1] For further information, please see:
Iemmi, V., Knapp, M., Reid, C., Sholl, C., Ferdinand, M., Buescher, A. and Trachtenberg, M. (2016), “Positive behavioural support for children and adolescents with learning disabilities and behaviour that challenges: an initial exploration of service use and costs”, Tizard Learning Disability Review, Vol. 21 No. 4, pp. 169-80.
Heather Dilks-Hopper, Chloe Jacobs, Catherine Sholl, Caroline Falconer, Nick Gore, (2019) "The Ealing Intensive Therapeutic and Short Breaks Service: an update five years on”, Tizard Learning Disability Review, Vol. 24 Issue: 2, pp.56-63.
Iemmi, V., Knapp, M., Gore, N., Cooper, V., Jackson-Brown, F., Reid, C., Saville, M. (2016). What is standard care for people with learning disabilities and behaviour that challenges and what does it cost?. British Journal of Learning Disabilities, 44, 309-321.