CEY1543
Written evidence submitted by The Challenging Behaviour Foundation
About The Challenging Behaviour Foundation:
The Challenging Behaviour Foundation is a UK-based charity which supports children, young people and adults with a severe learning disability and challenging behaviour and their families. The CBF exists to demonstrate that individuals with severe learning disabilities who are described as having challenging behaviour can enjoy ordinary life opportunities when their behaviour is properly understood and appropriately supported. For more information about the CBF go to our website: Homepage for the Challenging Behaviour Foundation
Much of the evidence included in our response can be found in the ‘Investing in Early Intervention Report’ by The Challenging Behaviour Foundation, The University of Warwick, the Council for Disabled Children, Mencap and Cerebra (published May 2022). Accessible at: https://cerebra.org.uk/wp-content/uploads/2022/05/EARLY-INTERVENTION-REPORT-A4-FINAL.pdf
This report summarises information from a seminar of families, researchers, practitioners, and voluntary organisations - where we brought together the existing evidence and good practice to help “make the case” for early intervention support for children with learning disabilities and their families. The benefits of early intervention are recognised; and the principle of early intervention is embedded in policies and best practice guidance. Yet too often it is not happening. This is deeply shocking when we have a multitude of evidence setting out the terrible consequences of failing to do so and adopting a crisis management approach.
Childcare Entitlements
The current provision of childcare for children with learning disabilities is insufficient to meet needs. A recent UK study of over 600 families evidenced significant areas of unmet needs in the early years, including family support and short breaks. (Sapiets, Hastings, Stanford, & Totsika, 2022). Short breaks (also called respite breaks) are a particularly important form of childcare for family carers of a young person with a learning disability, and are evidenced to benefit their wellbeing and therefore feel more confident caring for their child and managing challenging behaviours which are more likely to arise in children with learning disabilities due to poorer communication skills and coping strategies than their typically developing peers (The Breaks for Carers of Disabled Children Regulations 2011. Available from: https://www.legislation.gov.uk/uksi/2011/707/made#:~:text=%E2%80%94%20%281%29%20A%20local%20authority%20must%2C%20by%201st,meet%20the%20needs%20of%20carers%20in%20their%20area ). A government report by the Department for Education studied a wide variety of short breaks found that “families in less financially and materially deprived circumstances having greater access to short break services.” (p.130, https://www.gov.uk/government/publications/the-impact-of-short-breaks-on-families-with-a-disabled-child-over-time-the-second-report-from-the-quantitative-study). This indicates that it should be a priority to improve short break provision for families of children with learning disabilities in the most deprived areas.
Emerson & Hatton (2007) outlines that families who have a child with a learning disability are more likely to have no adult in paid work, be in income poverty, or live in a single parent household. When combined with Sapiets et al (2022) showing that just over 10% of families were able to access short breaks in a 12 month period, this could indicate that families who have a child with an LD may struggle to afford short breaks (even when this is subsidised to some degree). Again, this suggests improving the provision of respite care in deprived areas is an important priority.
In the NHS service model for supporting people with a learning disability and/or autism who display behaviour that challenges, it states ““All families or carers who are providing care and support for people who display behaviour that challenges should be offered practical and emotional support and access to early intervention programmes, including evidence-based parent training programmes, and other skills training, in line with NICE guidance and which is targeted to meet their specific strengths, challenges and needs.” (page 17). In actuality, this kind of provision is available to a few, not all parents and carers. Meeting this guideline would go a long way to improving the provision of childcare, especially in deprived areas where families face multiple intersecting disadvantages.
Calls to our helpline have shown that early years childcare provision is not always able to accommodate the needs of children with learning disabilities (particularly those who display challenging behaviour). Some parents are denied access to childcare on the basis of the child’s disability or their child is accepted but services fail to put into place provision/training to meet the child’s needs resulting in inappropriate care such as restraint and exclusion.
Short breaks are important forms of childcare for families of young people with learning disabilities whose behaviour challenges, however, these kinds of provision are not widely available, despite a variety of legal duties outlining that Local Authorities have a duty to meet the needs of eligible families.
In 2022, The Challenging Behaviour Foundation surveyed families with a child with learning disability and/or autism who have challenging behaviour, as part of the Getting It Right project. The findings of the survey showed that families experienced barriers to accessing short breaks services for their child with a learning disability such as waiting lists to access short breaks, difficulty recruiting Personal Assistants to deliver short breaks, and services not adequately supporting their relative’s behaviour and needs. Families explicitly mentioned that improving awareness to available support, increasing the hours available or direct payment rates, and improving the accessibility to managing short breaks would be beneficial.
The Disabled Children’s Partnership #GetItRight campaign found that families of disabled children did not feel as though they get the right support (https://disabledchildrenspartnership.org.uk/families-of-disabled-children-call-on-government-to-giveitback/). More than half have been treated for mental illness such as depression, anxiety or stress, which for some has led to a relationship breakdown, and over half have had to give up work to care for their disabled child as a lack of funding within health and social care have led to difficulty accessing appropriate support.
Further, the Disabled Children’s Partnership found that there is a funding gap in disabled children’s services (including short breaks) of over 1.53 billion. They argue that closing this gap would help parents return to/remain in work full time. https://disabledchildrenspartnership.org.uk/wp-content/uploads/2018/07/Case-for-a-Disabled-Childrens-Fund.pdf
The family unit is a really important context in child development. To improve outcomes for children with learning disabilities it is essential to take a whole family approach and invest in providing support to parents of children with learning disabilities, including childcare In the form of short breaks. Parents then stand a better chance of maintaining good physical and mental health, increasing their capacity to effectively support their child, and return to work.
N/a
Early years provision
To reduce inequalities, it is necessary to intervene early and increase the range and availability of early years support with a particular focus on support that is targeted to meet the needs of families who have a disabled child. To achieve this, workforce development is required to ensure frontline staff are equipped with the right skills and expertise to deliver evidence based early intervention support to children with learning disabilities. Training for this group should have a particular focus on the development of key skills such as communication, social and emotional and motor skills. (Investing in Early Intervention by The Challenging Behaviour Foundation, The University of Warwick, the Council for Disabled Children, Mencap and Cerebra (published May 2022). Accessible at: https://cerebra.org.uk/wp-content/uploads/2022/05/EARLY-INTERVENTION-REPORT-A4-FINAL.pdf ).
Access to respite and social care were more difficult during the COVID-19 pandemic. Mencap have found that 7 in 10 (69%) people with a learning disability had their social care cut or reduced and 4 out of 5 people had to take on more care of their family member during lockdown. https://www.mencap.org.uk/get-involved/campaign-mencap/socialcarecrisis
The ‘Broken’ report by the Challenging Behaviour Foundation found that when staff do not receive adequate training in supporting individuals with LD and their families, this can in turn traumatise families (https://www.challengingbehaviour.org.uk/wp-content/uploads/2021/03/brokencbffinalreportstrand1jan21.pdf ). This emphasizes the need to train staff with relevant expertise (such as managing a severe learning disability and challenging behaviour) and trauma-informed approaches.
A recent UK study shows that, on average, although families of pre-school children with learning disabilities are typically in contact with a lot of different professionals and services, this does not necessarily lead to focused early intervention support (Sapiets, Hastings, Stanford, & Totsika, 2022). This study also found that less than 30% of families in the UK who have a child with a learning disability had access to targeted early intervention support in the preceding 12 months. Therefore the majority of children with learning disabilities do not receive targeted early intervention support.
Sapiets et al. (2022) also evidenced significant areas of unmet needs in the early years including educational support, child needs (e.g., communication, behaviour, sleep), family support/short breaks, and access to some specific health professionals (occupational therapy, dental and paediatrics).
The most frequently mentioned barriers to accessing early intervention support within this study were:
- Barriers for caregivers (limited resources, knowledge, and time)
- Lack of sufficient services (absence of available services, insufficient resources and capacity, lack of continuity, inflexible services)
- Unhelpful professionals (limited knowledge, negative engagement, and actions).
There is evidence that Early Positive Approaches to Support (E-PAtS) can help meet needs of children with SEND by reducing behaviours that challenge in children and improving the wellbeing and confidence of families (Gore, Bradshaw, Hastings, Sweeney, & Austin, 2022). For more information on how E-PAtS can support children with SEND during early years, see https://www.challengingbehaviour.org.uk/what-we-do/projects-and-research/early-years-and-early-intervention/early-positive-approaches-to-support-e-pats/
a) Improvements which could be made
In Sapiets et al. (2022) study the most commonly reported facilitators of early intervention were:
- Supportive and competent professionals (positive attitudes, proactive engagement, knowledgeable)
- Empowered parental caregivers (access to resources, skills and knowledge, proactive behaviours, support from others)
- Accessible services (features of service delivery, flexibility, provision of resources, availability, continuity)
National Institute for Health and Care Excellence (NICE) specify that services should consider parent-training programmes for parents or carers of children aged under 12 (https://www.nice.org.uk/guidance/qs101/chapter/Quality-statement-6-Parent-training-programmes) and preschool classroom-based interventions for children aged 3-5 years with emerging or at risk of developing behaviour that challenges (1.7.3 Recommendations | Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges | Guidance | NICE)
These services could be improved by starting interventions at earlier ages. A key enabler of early support is early identification of needs to ensure that the support that a child requires is provided at the earliest opportunity (Sapiets, Totsika, & Hastings, 2021). If early intervention support commences later in a child’s life (i.e., compulsory school age or later) significantly more input is needed to see benefit. A benefit may still be apparent, but there may be less impact. Children with learning disabilities will require continued support and services when they are older, but it is important to start intervening in the early years to narrow the gap in outcomes between children with learning disabilities and other children. (p.20, ‘Investing in Early Intervention’ by The Challenging Behaviour Foundation, The University of Warwick, the Council for Disabled Children, Mencap and Cerebra (published May 2022). Accessible at: https://cerebra.org.uk/wp-content/uploads/2022/05/EARLY-INTERVENTION-REPORT-A4-FINAL.pdf )
Other improvements to better support young people include reducing the use of restrictive practices in early years. The Institute of Health Visiting and other charities collaborated to raise awareness of restrictive practice in early years. The ‘Investing in Early Intervention’ survey found restrictive practices used with children with SEND and before the age of 2 years old. (p24, Investing in Early Intervention’ report by The Challenging Behaviour Foundation, The University of Warwick, the Council for Disabled Children, Mencap and Cerebra (published May 2022). Accessible at: https://cerebra.org.uk/wp-content/uploads/2022/05/EARLY-INTERVENTION-REPORT-A4-FINAL.pdf ). This has also been evidenced in the ‘Reducing Restrictive Intervention of Children and Young People’ report by the Challenging Behaviour Foundation and Positive and Active Behaviour Support Scotland which evidenced restrictive practices such as restraint and seclusion on children as young as 2 years old (Feb 2020, https://www.challengingbehaviour.org.uk/wp-content/uploads/2021/03/rireportfinal.pdf )
To what extent does the early years system adequately prepare young children for their transition into primary education, particularly children from disadvantaged backgrounds.
January 2023