Children in care and care leavers with disabilities missing support, research suggests

Many children in care and care leavers with disabilities could be missing out on vital support, according to data published today obtained under a Freedom of Information (FOI) request.

Currently, national data on children in care and care leavers does not include information on disability. However, FOI requests by researchers at Coram Voice sent to all 153 local authorities in England (of which 87% replied) showed a significant disparity in the numbers of care-experienced children self-reporting with a disability compared to local authority records.

Researchers at the children’s rights charity found inconsistencies in how disability is defined across local authorities, with significant variation in the percentage of children in care who were recorded as having a disability in a local authority, 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%.

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 is calling for local authorities to improve their data collection and reporting 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.

They also say 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.

“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,” Dr Claire Baker, Senior Practice Adviser with Coram Voice’s Bright Spots Programme and author of the report, said. “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.”