Gathering and using data on how children in care and care leavers are doing is a fundamental part of ensuring they are receiving the right support. But we have a major gap in our national statistics – they currently do not tell us how many care-experienced children and care leavers have a disability or long-term health condition. As a result, these children’s experiences risk being hidden and not prioritised.
The intersection of care experience and disability is an area that has remained stubbornly overlooked. To address this gap, Coram Voice has published a new report combining findings from a Freedom of Information (FOI) request to all 153 local authorities in England, self-reported disability data from the Bright Spots Programme, and feedback from workshops with care-experienced young people and leaving care professionals.
Understanding disability
Defining “disability” is far from straightforward. While it often includes physical or mental impairments, disability also encompasses how these impairments are affected by social, cultural, economic, and physical environments. Young people and professionals we spoke with acknowledged that the concept of disability is broad, with some disabilities regarded as easier to define than others, but many invisible and misunderstood.
Service definitions of disability and eligibility criteria for support vary greatly, raising concerns about whether young people are getting the support they need.
For the first time we can report:
- 11% of children in care (out of 76,528) were recorded as having a disability, the same proportion as in the general population.
- 13% of care leavers (out of 55,222) were recorded as having a disability, which is lower than the general population of 16- to 24-year-olds (15.6%).
The proportion of children in care with disabilities recorded by local authorities varied widely, ranging from 3% to 32%. For care leavers, this variation was even more stark, ranging from 1% to 36%. This disparity suggests care-experienced children and young people with disabilities may be going unrecognised.
Through the Bright Spots Programme, we ask care leavers directly about disability. We found that 27% of care leavers self-reported having a disability or long-term health condition. The proportion self-reporting disability has also increased over time – from 22% in 2017 to 32% in 2023.
Even when disabilities are recorded by local authorities, the categories often fail to reflect the lived experience of care-experienced young people. Local authorities are instructed to record “type of disability” and the most common types listed for both children in care and care leavers were “learning”, “autism”, and “behavioural” disabilities (e.g., ADHD). When care leavers are asked about disability, many report mental health issues such as depression, anxiety, and PTSD, but these are not included in the “disability codes” used by local authorities.
This highlights a critical issue: data is being recorded by professionals while young people’s voices are not being fully heard or recorded. This discrepancy between self-reported data and official records suggests that many young people may not be receiving the support they need.
Existing research shows that children in care and care leavers with disabilities face several challenges. Compared with their non-disabled peers in care they may be more likely to live in residential care, be placed “out of area”, experience multiple moves or live in inappropriate placements.
The Bright Spots data adds to this worrying picture showing that care leavers with a disability report lower wellbeing across various measures. Those with a disability are less likely to feel safe or settled in their homes, and more likely to feel lonely and struggle financially compared with other care leavers.
The care system is supposed to ensure that disabled young people have a smooth transition to adulthood, but the reality is often very different. Advocacy case studies and serious incident reports highlight poor processes, a lack of person-centred approaches, and failures in inter-agency collaboration.
One of the strongest messages we heard from care-experienced young people was the need for professionals to be curious about their disabilities and to listen to their experiences.
Main recommendations
We have developed 19 recommendations for government and local authorities which describe the action needed in two key areas:
1. Enhance Policy and Practice: Policies and practices need to be more inclusive and responsive to the needs of disabled young people. This includes offering more personalised care plans, ensuring smoother transitions from care, and that the views of disabled children and care leavers are heard and acted upon.
2. Improve Data Collection: Improve the way data on the types and prevalence of disabilities among children in care and care leavers is collected and recorded. Better data will allow for more effective service planning and monitoring.
By improving data collection and refining policies and practices, we can ensure that these young people receive the support they need to thrive.
More from: coramvoice.org.uk
