'When someone tells you an illness is impacting their life, listen and fully explore'
Young person leaving care
Defining ‘disability’ is not a simple thing. It includes impairments, but also effects from social, cultural, economic and physical environments.
Unfortunately research focusing on children and young people with disabilities in the care system and those leaving care remains scarce. The data is problematic, and the voices of children and young people are frequently missing.
A new report from Coram Voice outlines some of the issues and aims to address the gaps. Disability, Disparity, and Demand provides valuable insights for those supporting care-experienced children and young people with disabilities or long-term health conditions in England.
Disparities in data and support
From our research the report has pulled together learning from: a Freedom of Information (FOI) request sent to local authorities; findings from the Bright Spots Programme and discussions about disability with young people and professionals.
The findings represent the first national snapshot of disabilities recorded by local authorities among children and young people in the care system, they show:
- 11% of 76,528 children in care were recorded as having a disability – this is the same proportion as children in the general population (11%).
- 13% of 55,222 of care leavers were recorded as having a disability – this is lower than young people aged 16-24 in the general population (15.6%).
The data exposes wide variation in recording across local authorities:
- For children in care with a disability this ranged from 3% to 32%.
- For care leavers with a disability this ranged from 1% to 36%.
The most recorded disabilities for both children in care and care leavers were learning disabilities, autism, and behavioural conditions (such as ADHD).
When care leavers were asked directly via the Bright Spots Programme if they had a disability or long-term health problem just over a quarter (27%) self-reported disability; a figure that is rising (22% in 2017 vs. 32% in 2023).
Looking at what young people told us it’s clear that many disabilities coexist - it was rare for a young person to write about just one disability or long-term health problem. The top three disabilities young people wrote about were: autism, mental health conditions and ADHD (mental health conditions such as depression, anxiety, and post-traumatic stress disorder, reported are not included in the ‘disability codes’ used by local authorities).
As previously mentioned, defining ‘disability’ is not a simple thing. When we asked care experienced young people and professionals, they both agreed disability can be multifaceted and include conditions such as neurodiversity (an area where some professionals felt less confident).
Some professionals worried that support for disability could sometimes focus more on physical health or learning impairments where the need for ongoing support or adaptations may appear more obvious.
'Be more curious about ‘diagnosis’ on file when they transition. What does that mean for the young person, how does that impact them and how do they feel about it?'
Professional working with care leavers
Everyone was concerned about whether children in care and care leavers with a disability were getting the right support. Whilst law and guidance are designed to ensure children in care with disabilities experience a well-planned, smooth transition from care. Examples from advocacy work and learning from serious incidents show not all young people do. There is evidence of poor processes, non-person-centred approaches, limited recognition of young people’s rights, failure of services to work together and funding issues.
Moving from knowledge to action
Recommendations for improvements are focused in two main areas:
- Better Data Collection: Local authorities and government need to improve how they collect and report data on disabilities for children in care and care leavers. Improved data, including hearing directly from young people, will allow for more effective service planning and monitoring.
- Enhance policy and practice: Being curious and listening to children and young people about their disabilities and how they affect them. Use what children and young people report to design services that meet the needs of all, including those who might not qualify for specialist services but still require additional support. Ensure staff feel confident, have the right skills and support to deliver personalised care plans and smoother transitions from care.
Ultimately 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.
It’s clear that whatever way disability is measured we are talking about a significant group. Improving data and all of us being more questioning about disability in our work with care-experienced young people are changes we need to see.