Earlier this year, I was commissioned by the Cabinet Office’s Disability Unit to explore the lives, experiences and needs of disabled children in England, to inform its Disability Action Plan.
Since then, my team and I have spoken to children, young people, parents and practitioners across the country to understand the challenges disabled children face, as well as what they want to see change.
My report focuses on the experiences of disabled children – which can include children with autism and other neurodevelopmental needs, additional social and emotional needs, as well as physical needs.
When I surveyed almost 600,000 young people in the Big Ask, I found that children with special educational needs and disabilities (SEND), which will not include all disabled children, have very similar aspirations for the future as other children, a great job and family life, and were just as happy as children overall.
The responses also showed that children with an additional need, who were being supported in mainstream schools, were happier than the overall cohort.
The Big Ask survey does highlight demographic differences that exist between children with and without SEND. Children with SEND are more likely than non-disabled children to be attending a school in the most deprived fifth of neighbourhoods (18% vs 15%), to be in foster care (1.5% vs 0.6%), and to be a young carer (3% vs 1%).
This Big Ask also highlighted the distinct challenges children with SEND face.
Children with SEND are less likely to feel safe. Across all aspects of life asked about in The Big Ask, this was the largest relative difference between children with and without SEND (6% of children with SEND were unhappy with their personal safety, compared to 4% children without SEND).
A slightly higher share of children with SEND said in The Big Ask that it’s unlikely they will have a better life than their parents compared to non-disabled children (11% vs 9%).
In the Children’s Commissioner’s March 2023 nationally representative survey of 3,593 children, children with special educational needs and disabilities (SEND) were more likely than other children to say they often or always felt lonely. Over a third of children with SEND (36%) said they often, always or ‘some of the time’ felt lonely, compared to 23% of other children.
In this survey, the proportion of parents who had never sought help for the mental health of their child with SEND was 22%, lower than other parents (73%), but also illustrating that not all parents of children with SEND see a need to seek help for their child’s mental health. This may also be as a result of more systematic support being in place for this cohort of children, where support is working well.
Children with SEND face a number of barriers. For example, their needs not being identified early enough or not at all – with children often waiting too long to get the help they need, and sometimes not until they have reached crisis. The time it takes to receive support, the thresholds for that that support, the need for a diagnosis rather than receiving support on basis of need and the quality of support available are too variable.
Other barriers include schools not being a place where children with additional needs can thrive – resulting in children not attending, or having a place in, mainstream education, often where their needs could have best been met there.
Accessibility was also identified as a barrier. Very often playgrounds, toilets, public transport or leisure activities are not designed with the needs of disabled children in mind.
Other issues include poor quality care; issues around bullying, discrimination and feeling unsafe – with people often targeting children because they are disabled; and disruptive transitions between services.
The children we heard from were clear about what they wanted. They wanted to be understood, seen and heard; to benefit from a fantastic, ambitious education in mainstream school where possible and support at school when they need it and for all activities and services to be accessible to them.
They also told us they wanted to receive high-quality care locally and quickly; to be free from harassment and discrimination and to experience transitions smooth that prepared them for adulthood.
Based on what children and young people have told me I have recommended to the Cabinet’s Offices Disability Unit a number of key changes that I would like to see.
These range from early identification. The Department for Health and Social Care (DHSC) should prioritise early diagnosis of children’s conditions and impairments by reducing waiting times for assessment and support in CAMHS and community health settings. The Children’s Commissioner will be publishing research into children’s neurodevelopmental waiting times and pathways to support in early 2024 to support this priority.
The Children’s Commissioner also wants to see better data. She wants the government to introduce a consistent, unique identifier for children, to facilitate better data matching between health, education and social care, to ensure disabled children do not fall through the cracks between information systems.
Other recommendations include improving the SEND and alternative provision system; tailored support for attendance; Ofsted and the Care Quality Commission (CQC) should work together to champion inclusion.
You can read the full recommendations in the main report.