Disability in the care system: the struggle for young people to access diagnosis and support
Growing up in care with multiple disabilities was extremely challenging. I did not speak or smile at aged two and was described as “depressed” by my family social worker. At four, another social worker queried whether I might have autism, but it was claimed ‘girls don’t have that’. When I was 11, my older brother was diagnosed with autism, and when I read the paperwork, it summed me up; I knew then that I was autistic. I also have a condition called Ehlers-Danlos Syndrome which causes mobility issues and something as simple as picking up my school bag could lead to a dislocated shoulder and land me in A&E.
At 12, I suffered a traumatic brain injury. I fell off a friend’s shoulders, breaking my skull, and cerebellar ataxia followed. Whilst I re-learnt to walk with crutches for a short period, I am now a full-time wheelchair user with a visual impairment. I went into care at 14. I was always going to be vulnerable due to my brain injury, but this was not always taken seriously by the professionals at my residential care home. To ‘help’ me recover from my fear of sitting on other people’s shoulders, one of the staff sat me on his shoulders in a local park. I fell backwards and hit my head in a different area from my previous break.
While in the residential care home I was diagnosed with mixed anxiety and depressive disorder, anorexia, and complex post-traumatic stress disorder but I was never supported to understand what my needs were and how they might impact my life. I finally asked to be assessed for autism. It had been picked up by multiple professionals, including the manager of the children’s home and some teachers at the new school. However, CAMHS refused to assess me. They said that because I was in care, I could be moved at any point whilst on the waiting list and couldn’t guarantee I would still be living in the same area. CAMHS said I would have to wait until I was 18 to be put on the adult waiting list. My social worker should have fought for me at that point, but nothing happened.
At 16, I broke down. I had an anorexia relapse, and I was having daily ’episodes’, which I now know to be autistic meltdowns. The residential home placed me on a behaviour plan, which stated that if I had more than two ‘episodes’ a week, I failed. If I had more than four failures in three months and I would lose my place at the residential home. Well, I lost my place. I felt that the care system couldn’t handle my disabilities.
I was then moved to a homeless YMCA hostel that also failed to manage my disabilities. I needed to use the lift, but it was only in operation after 8am when I needed to leave the hostel at 7:30am to get to school on time. As a consequence, I was late for school every day and I was kicked out of the hostel within 26 days. Without support, I went on to fail all but two of my GCSEs and all my A Levels.
I finally received a late diagnosis of autism at the age of 21 and went on to do an access to higher education course to get into university to study International Relations. Thanks to the diagnosis, I now receive specialist support from an autism-trained mentor twice a week which helps me stay on track with my studies.
Sadly, my story as a young person with disabilities, struggling to access diagnosis and support in the care system, is far from unique. A new report by Coram Voice, featuring an analysis of the numbers and experiences of children in care and care leavers with a disability or long- term health condition found that many may be missing out on vital support. Data obtained under a Freedom of Information (FOI) request to all 153 local authorities (LAs) found that 13% of care leavers had recorded disabilities. In contrast, 27% of care leavers self-report having a disability or long-term health condition. The disparity between these figures suggests that a significant number of children and young people are not having their needs met. The percentage of young people self-reporting a disability or long-term health condition is also rising over time from 22% in 2017 up to 32% in 2023.
The research also found 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%.
Some practitioners who shared their perspectives as part of the research noted that some disabilities, such as autism, are “invisible” and reported feeling less confident in their understanding of neurodiversity. They noted 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. Young people reported that they need their workers to be curious about disability and to have conversations with them to hear their views and experiences. The failure to have open discussions with young people can lead to them not knowing enough about their condition and needs.
According to existing research, children with disabilities are more likely to be looked after than children without disabilities. They are also at an increased risk of harm and abuse than non-disabled children and experience multiple moves or inappropriate placements. Coram Voice Bright Spots Programme research also found that care leavers with disabilities scored lower across a range of wellbeing measures. This is something I can relate to, as it is much harder to seek employment opportunities, make friends and have positive mental health when you have a disability.
Disability comes with a whole host of financial struggles for care experienced young people due to reduced working opportunities. This is compounded by the complexity of the welfare system, as well as higher utility bills, and extra costs due to specialist diets and equipment.
Given the risks and poorer outcomes for children with disabilities, the failure to keep adequate records of disability is shocking. Ultimately, LAs do not know how many of the children in their care and their care leavers have disabilities, making it impossible to offer the right resources. 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 and the disparity with self-reported disabilities should be a huge wake up call.
I would like to see dedicated neurodiversity workers embedded in looked after children teams, along with speech and language therapists who can diagnose autism, ADHD, PTSD, and other common disabilities. Social workers need up-to-date disability data to ensure that they can support their young people effectively. But they should also encourage open conversations with young people, welcoming their questions and tackling stigma. For this to happen, it is essential that professionals themselves are supported by their LAs to gain the skills and knowledge of disabilities and long-term health conditions. I also think all children coming into care who have suspected disabilities or additional needs should be fast tracked through CAMHS to ensure they don’t fall through the gaps like I did.
I struggled as a child in care with disabilities but after receiving the diagnosis I needed and the necessary support, I excelled in higher education and am now applying to study for a PhD. Now is the time to ensure the next generation of looked-after children and care leavers are given the right support to reach their potential.
Susan Lake, Postgraduate Student
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