Investing in Early Intervention
Why we should intervene early to support children with learning disabilities and their families, with examples from practice showing how it can be done
All children who are at risk of presenting behavioural challenges have the right to have their needs identified at an early stage, leading to co-ordinated early intervention, support and education – Challenging Behaviour Charter
What actions need to be taken?
1. Invest in early intervention – waiting until things have reached crisis point is not acting fast enough
Getting the right support early on is crucial to helping children and young people with a learning disability live good lives. Evidence shows that early intervention can have positive outcomes for quality of life, but it also shows that, if support is available early on, this can lead to considerable savings over time.
The Government needs to:
Commit to investing in early intervention for children and young people with a learning disability, including those whose behaviour challenges
An approach to investing in and getting early intervention right will need the involvement of the Department for Education and the Department of Health and Social Care, among others
The Department for Education and the Department of Health and Social Care need to:
Write to a) local authorities, b) integrated care boards, and c) commissioners of services for children and young people with a learning disability to share resources and good practice on how to commission and support early intervention programmes
2. Ensure all children and young people with a learning disability have access to a keyworker
The NHS Long Term Plan includes a commitment that “by 2023/24 children and young people with a learning disability and/or who are autistic with the most complex needs will have a designated keyworker”. Currently, keyworker support is available to children and young people who are in inpatient settings or who are at risk of admission.
We believe that having a designated keyworker would have a positive impact on all children and young people with a learning disability and complex needs, not just those who are in inpatient settings or at risk of admission. If a keyworker is only available to children and young people who are “at risk of admission” or who have already been detained in inpatient settings, they are coming in at a point where these children and young people are already near – or in the middle of – a crisis situation. Crisis situations can sometimes be sudden, but in many cases they are the result of pressure building up over time as a consequence of people not being able to access the support that they need.
Having access to the right support early on means that children and young people are less likely to reach a point of crisis. We believe that ensuring that all children and young people with a learning disability and complex needs have access to a keyworker, even if they are not currently “at risk of admission”, will help them and their families to navigate the system and avoid crises from occurring.
NHS England needs to:
Expand the keyworker scheme so that all children and young people with a learning disability and complex needs have access to a keyworker
The Government needs to:
Commit to funding the expansion of this scheme
3. Introduce a separate pathway for assessing the needs of disabled children
There is currently a “one size fits all” approach which means that disabled children are funnelled through an assessment that is not designed to assess and meet their needs or the needs of their families. This approach looks at an assessment of needs through a safeguarding lens – resulting in families being blamed rather than supported.
Disabled children, including children with a learning disability whose behaviour challenges, need specific support in order to live good lives, but frequently assessors do not have the specialist knowledge or training that would enable them to identify and meet these support needs. In addition to being ineffective, approaching the assessment of needs for disabled children through a safeguarding lens when there is no indication of any safeguarding concerns causes trauma to the child and their family.
The University of Leeds School of Law has produced two key reports on this issue:
Institutionalising Parent-Carer Blame
The prevalence and impact of allegations of Fabricated or Induced Illness
The Department for Education needs to:
Introduce a new distinct assessment pathway for disabled children which focuses on the needs of the disabled child and their family
Introduce a requirement for assessors to be suitably experienced and to have received specific training in the needs of disabled children and how to work with them and their families
This may include training in augmentative communication – for example, children with a severe learning disability are often non-verbal, but it is still important to ‘hear’ their views and preferences throughout this process
For more information on how the views and preferences of children with severe or profound and multiple learning disabilities can be learnt and acted upon, see:
Valuing the views of children with a learning disability
We have worked to co-produce these actions and asks, building on years of work that has gone before it. We are happy to engage with policy makers at a local, regional, and national level about how we can get things right for people with a learning disability whose behaviour challenges. If you would like to talk about any of the actions in this plan, or any work you are planning on doing, please email actionplan@thecbf.org.uk
