New research finds children in care and care leavers with disabilities are missing out on vital support

Currently, national data on children in care and care leavers does not include information on disability. Consequently, the data obtained by Coram Voice represents the first national snapshot of disabilities recorded by professionals among children and young people in the care system.

Today’s report finds:

• There is significant disparity between local authority (LA) data, which records that 13% of care leavers have a disability, and self-reported data which found 27% of care leavers reported a disability or long-term health condition**
• Inconsistencies in how disability is defined across LAs, with significant variation in the percentage of children in care who were recorded as having a disability in an LA, ranging from 3% in the lowest proportion to 32% in the highest. The difference was even more pronounced in care leavers with 1% vs 36%
• The percentage of young people self-reporting a disability or long-term health condition is rising over time from 22% in 2017 up to 32% in 2023

Differences in how professionals and young people viewed disability also emerged during the research. Professionals highlighted that support for disability tends to focus on physical health or learning impairments where the need for ongoing support or adaptations can appear more obvious. Some practitioners acknowledged that some disabilities are invisible and reported feeling less confident in their understanding of neurodiversity. Professionals also noted a lack of resources had led to a high threshold for support, with some care-experienced young people seen as ‘not disabled enough’.

However, young people who shared their views expressed that for them disability can be multifaceted and include conditions, such as neurodiversity, which can make day-to-day life more difficult. Mental health issues such as depression, anxiety, and PTSD, reported by young people are not included in the ‘disability codes’ used by local authorities. Young people also highlighted that accessing support for a disability or long-term health condition(s) can be challenging as services do not always provide what is needed. Receiving a diagnosis was helpful for some young people in managing their needs but stigma associated with having a disability was also a concern for some young people.

In response to the findings, Coram Voice makes the following recommendations:

• Improve data and knowledge: Local authorities and government must improve the way they collect and report data on the types and prevalence of disabilities among children in care and care leavers. Better data, including hearing directly from young people, will allow for more effective service planning and monitoring.
• Enhance policy and practice: Services need to be more inclusive and responsive to the needs of care-experienced disabled young people including those who do not meet thresholds for specialist services, but whose additional support needs cannot be met by existing services. The focus must be on creating services that can support the range of needs disabled children in care and care leavers experience and ensuring staff feel confident, have the right skills and support to deliver personalised care plans and smoother transitions from care.

Dr Claire Baker, Senior Practice Adviser with Coram Voice’s Bright Spots Programme and author of today’s report, said: “To be sure the rights of disabled children in care and care leavers are upheld, we must know who they are and how they are doing. The absence of good quality statistics and information about their experiences impacts on the development of services to effectively meet their needs.

“Our work has revealed significant disparity in the numbers recorded by local authorities. It has highlighted that young people’s voices are missing. It’s clear that whatever way disability is measured we are talking about a significant group of children in care and care leavers affected, it’s shocking that we know very little about how they are doing. Improving data and all of us being more curious about disability in our work with care-experienced young people are changes we need to see.”

Coram is hosting an event on 20 November, Understanding Disability: Past and Present in the Experience of Care, to delve into the findings of the report and learn and reflect on both the historical and contemporary experiences of care experienced young people and care leavers who have disabilities or long term health conditions. Find out more and book a free ticket.

Read the full report