Care leavers’ transitions to independence
Disabilities and additional needs for care leavers
- Living with disabilities and additional needs
- Diagnosis, recognition and misinterpretations
- Access to support, adaptations and services
- Neurodiversity and one-size-fits-all systems
- Support that would have been helpful
Living with disabilities and additional needs
The care leavers we talked to described a wide range of disabilities and long-term conditions, including autism, hypermobility, chronic pain, asthma, partial hearing, and mobility limitations. These needs shaped everyday life and affected mental health, independence, housing and access to education. Some required adjustments to living spaces, learning environments or support plans. Others needed pacing, breaks, medication or aids to manage pain, mobility or sensory overwhelm. Where help was provided, it often came late, inconsistently, or only after young people had repeatedly advocated for themselves.
Elijah explained that professionals focused on a mental health label he didn’t have, and his other disabilities were overlooked when moving him.
Elijah explained that professionals focused on a mental health label he didn’t have, and his other disabilities were overlooked when moving him.
So, she was trying to get me diagnosed with that, which I don’t actually have BPD, but because she believed I did, it was leading to some very interesting decisions being made at that point in time and she was pushing for me to be moved to a placement that was specialist in mental health because of how badly I was struggling with my mental health at that point in time. Which made sense to move me somewhere that had training in mental health, but none of my other disabilities are being taken into account. So... and then because this placement was in another borough: it was in [town], I got moved to a different mental health team. Still under the same NHS trust, but just a different mental health team.
Diagnosis, recognition and misinterpretations
Several care leavers said signs of disability or neurodivergence were present earlier in their lives but went unrecognised or undocumented for many years. Sometimes assessments had been requested by professionals but never followed through. Others received incorrect or premature labels, with one young person’s autism and complex trauma misread as a personality disorder. Misdiagnosis affected the support young people received, how they were viewed by professionals, and whether they were trusted when raising concerns. Some felt that once a label was applied to them, especially one that had stigma attached to it, their voice was dismissed.
Elijah said his disabilities were never properly recognised in care, and misinterpretations led to wrong labels instead of the assessments he needed.
Elijah said his disabilities were never properly recognised in care, and misinterpretations led to wrong labels instead of the assessments he needed.
So, if Staying Put wasn’t an option, we could have done Shared Lives if that was available at the time, but they... they didn’t do any of that. I wasn’t actually referred to adult social care until a couple of years ago when I finally referred myself and they contacted the local authority. But there’s never been any kind of factoring in of my disabilities. Despite being diagnosed with generalised hypermobility while being in foster care, I was never put with a foster parent that understood my medical needs, or understood my disabilities. I was never in a placement that was even accessible for the issues that I have with my joints and things; my medical needs were never taken into consideration in care, let alone while preparing to leave care. And things like my autism and stuff wasn’t dealt with properly. And technically it wasn’t officially diagnosed when I was in care, but it should have been because it was first mentioned when I was like 18 months old and the doctors had asked for me to be assessed when I got older, I think they were waiting till I was like five or six, and my parents never did it, but coming into care it was well documented that the doctors had been asking for that assessment most of my life, and social never did it; they never got me assessed. They finally did the paperwork when I was 17, but they screwed up the paperwork, so it didn’t actually get done till my psychiatrist referred me when I was about 18, so they... they’ve just never... they never took any of that into account.
As soon as you have that personality disorder label, nothing you say gets listened to, absolutely nothing. You just get labelled as someone who’s expected to say and complain about things, and nothing you say is taken seriously from that point. It’s such a stigmatised diagnosis and they use it as a way to really just throw people away, and so often the people that are actually being diagnosed with it, don’t have it. A lot of people who are diagnosed with it, end up being diagnosed with things like autism, PTSD, complex PTSD, bipolar.
Access to support, adaptations and services
Support varied widely. A few young people we spoke to said they received home adaptations, mobility aids, extra time in exams or practical help to live independently. But some said accessing these adjustments had been slow, was dependent on individual workers pushing for support, or required self-referral at a point when they were already struggling. Some housing lacked basic accessibility or awareness of medical needs, leaving young people to manage pain, risk or medication alone. Delays in referrals to occupational therapy, adult social care and disability assessments meant needs were often unmet during key transitions, including leaving care.
Ninna’s support was shared between her carer, college and her personal adviser, especially when she needed help with services or financial paperwork.
Ninna’s support was shared between her carer, college and her personal adviser, especially when she needed help with services or financial paperwork.
Carer: I think you do some things yourself.
Ninna: Yeah.
Carer: I think some things we do together.
Ninna: Yeah.
Carer: Some things college help with.
Ninna: Yeah.
Carer: So, it’s a bit of a sort of mishmash, and I guess, you know, if we’re stuck, we would ask [PA] if she knew anyone. Like when we were looking at respite, [PA].
Ninna: Yes.
Carer: —was looking at whether she knew anyone round here that could help with respite, so if we’re stuck with something, we’ll always ask her and she’ll see what she can do.
Ninna: Yeah, and we’ll ask about the OT and then she had...
Carer: Yeah, we asked about an OT referral when we were talking about that. [erm] Yeah, so she, she does.
Ninna: I think with the smaller things we can manage ourself, but some of the bigger things we ask for them to tell us.
Carer: Yeah, yeah. ’cause some things it’s easier because Ninna hasn’t got financial capacity, so the local authority hold all the money stuff, so it means that we don’t have things like proof that she gets PIP, or proof that she’s getting housing benefit, or you know those kinda things, so you kinda end up having to go to the local authority for something because you haven’t got a letter that says this, or we do... we have to do some of that stuff, that we, we need to, which is a bit laborious, but, you know, that’s just the way it is.
Neurodiversity and one-size-fits-all systems
Young people told us that services and support rarely considered neurodivergent communication styles, sensory needs or executive function challenges. Services expected all young people to become self-sufficient by rigid timelines, without recognising that supported independence would have been safer and more sustainable for some. Phone-based appointments were inaccessible for those who were neurodivergent, partially deaf or who struggled to communicate verbally. Pathway planning often ignored disability-related needs, and some young people were moved to environments that worsened their distress. Young people felt that standard processes did not account for or meet their individual needs.
Elijah explained that one-size-fits-all support doesn’t work, especially for autistic young people who need personalised help.
Elijah explained that one-size-fits-all support doesn’t work, especially for autistic young people who need personalised help.
And I think what I’ve noticed a lot with the care system is they focus on hyper-independence. They don’t focus on interdependence and teaching you to develop a support network and a community and being independent within the support that you have from that community. ’cause humans are not built to be solely independent as lone wolves: most people have a support network, and they don’t teach care kids how to build that up, they very much just push you to move into semi-independent, move into your own flat, do everything on your own, and they... they tell you that, that one day you’re gonna be on your own and you need to do all of this on your own ’cause one day the system’s not gonna be there, but rather than building up a network around you, they just tell you that if you can’t live as a lone wolf on your own, then you’re somehow institutionalised and failing at life, and it’s insane. So... especially then when you’ve got things like autism and disabilities where you need more support in place, no one thought to do a referral to adult social care, no one thought to get additional support in place: they just label you as institutionalised, which is something that I’ve talked about a bit on my [social media] before because it drives me crazy how if you see a young person living at home who isn’t necessarily as independent as their parents would want them to be, people will usually ask their parents, you know: “What went wrong, you know, did they not teach them what they need to know?” or, you know: “is there a... a certain reason why they need additional support and things?” But then when you’re in care, the second you’re not independent – you’re institutionalised – you’ve become too reliant on the system, and we don’t say that to kids at home.
Alex felt the system didn’t understand his ADHD, and meetings weren’t accessible for him (read by an actor).
Alex felt the system didn’t understand his ADHD, and meetings weren’t accessible for him (read by an actor).
I wasn’t really a fan of meetings. I was a very ADHD kinda kid.
So, I never wanted to sit down, I just always had to be up and moving; however, that wasn’t very helpful because every time I would... would, say, stand up and walk around, and whatnot, they’d get upset and ad-gee, and obviously I can’t control what I do and don’t do. I can’t control that I walk around.
So, to stop them all screaming at me, I just decided: ‘enough is enough, I’m in charge of my own life, I’m gonna go do... I’m gonna cancel this and I’m gonna do it my way,’ which I did.
Support that would have been helpful
Young people wanted services to recognise disability early, listen to them, and adapt expectations around independence. Care leavers wanted longer-term planning and joint working with adult social care to begin well before they had turned 18. They described a system built for the 'typical' person, not for those with sensory or neurodevelopmental differences, mobility impairments, pain, or communication needs. They asked for accessible housing, flexible contact options, specialist homes when needed, and support that grew with them rather than disappearing when they reached adulthood. The young people we spoke to wanted understanding, not assumptions about what they can do, how they function, or what helped them to thrive.
Robyn felt she would have moved to the right housing if her personal adviser had looked at her real needs, not just her diagnosis.
Robyn felt she would have moved to the right housing if her personal adviser had looked at her real needs, not just her diagnosis.
I think they literally chose the first place that they could get a referral through to within the space of a few weeks, in all honesty. I went to visit somewhere else which was basically all over 55 and I was like: “Guys, I don’t think this is the kinda supported accommodation we’re looking for, ’cause, you know, I... I’m a young person not struggling to walk, or anything, I just need the emotional support.” So then when they like... I think the basis of getting me supported accommodation was unfortunately my autism not my mental health, so where I went was pri... specialised in learning difficulties, and then I got there and they were like: “Yeah, you really don’t need this kind of support.”
Oh.
Hence the hours being reduced and the notice being given and I was like: ‘yeah, I probably agree with you guys.’ And that’s kind of on my social worker for not doing more research into the kind of accommodation that would have been suited for me. I really think a semi-independent placement, like, whether it’s flats, and there’s an office for the shared building, would have been more suited rather than kind of one-to-one support, and I was like: ‘yeah, this is where it went wrong.’
Elijah explained that his disabilities meant he needed early planning and an adult social care referral, not a last minute move to semi-independent living.
Elijah explained that his disabilities meant he needed early planning and an adult social care referral, not a last minute move to semi-independent living.
I mean really because of all my disabilities, they should have been... from the time that they were preparing to move to leaving care, they also should have been preparing to do referrals to adult social care to have that in place from the time I was 18 as well. Because of the level of support that I need, I’ve never been able to live fully independently, so they should have been preparing for that and should have been getting that support in place as well, and then having kind of that multi-agency planning with adult social care, and the leaving care team, to decide whether semi-independent would even be right, or whether adult social care placement would have been better, ’cause they can do things like Shared Lives and supported living.
Copyright © 2024 University of Oxford. All rights reserved.