Different services (particularly between healthcare and social services) work with different cut-off ages for the move to adult services. Delays frequently happen due to planning for the move starting too late. When making these transitions disabled young people frequently must restate impairment and needs, despite these remaining stable. Gaps in information provision, including in the benefits system, is regularly highlighted, with young people and their families struggling to find the information they need, at the right time, to support them through this period.

As mentioned above delays with gaining a diagnosis can create difficulties in gaining appropriate support, particularly in education. This is most acute in neurodiversity. Mental health provision is often not responding to the level of need we are seeing. However, for those who have received appropriate and consistent mental health provision, this has helped respond to some of the problems their adverse childhood experiences have created.

Since the pandemic being able to secure GP appointments and be supported by GPs is more of a challenge. The move from child to adult social care provision is marked by sudden changes in what is available, even though the needs of the young person have not necessarily changed. Personal Assistants can be really important in supporting the disabled young person and enabling them to participate in society. However, retaining and paying for this provision can be a significant problem.

Childhood is frequently marked by experiences of bullying, discrimination and abuse (including by peers, family members and/or professionals). This is resulting in significant mental health impacts into adulthood, thereby limiting future education, employment and other opportunities.

Despite a range of legal and policy requirements on education and training environments to be inclusive and provide for the needs of their students or trainees we are seeing many examples of a lack of understanding and accommodation of young people’s needs (in day-to-day school life, or exams). Institutions often wait for formal diagnosis to provide dedicated support, rather than base it on need. Waiting lists for getting a diagnosis, as well as waiting lists and challenges obtaining Education, Health and Social Care Plans (EHCPs) in England and Coordinated Support Plans (CSPs) in Scotland mean that disabled young people are being left with little provision or recognition of their needs. Those with a diagnosis and without are often perceived by staff as being ‘naughty’ and this can lead to damaging disciplinary measures. This appears particularly prevalent for neurodivergent young people.

We have consistently heard concerns from some disabled young people that they feel ‘singled out’ in mainstream education; that the emphasis on core curriculum and results does not support them to maximise their strengths. While some of our participants have reported better experiences in special schools (England and Scotland) or adapted learning environments (Scotland) in terms of feeling safer and their needs being provided for, this is at the cost of much less emphasis on academic curriculum and being removed from their local community.

For those who attend college programmes, they often acknowledge there is greater support for their needs, but not always meaningful opportunities for them to develop skills or prepare for employment.

Disabled young participants are being offered support into employment opportunities and some have found these helpful and have gained employment through them. However, other experiences have been less positive, with problems such as what is being offered being inflexible, or standardised. Sometimes disabled young people are met with low expectations of what they can do or learn, with little being done to make reasonable adjustments to their needs. Recruitment processes are often a barrier, with little done to enable the young person to show what they are capable of, or to help them understand why they have not been selected for interview or the role. In voluntary work, placements and employment disabled young people have also experienced tokenism, feeling that they are ‘making up the numbers’.

Transport is vital to participating in society and to exercising some level of independence but is often inadequate. There are long waiting times for the Motability scheme, public transport costs can be too expensive (though notably in Scotland, young people under 22 receive a free bus pass as do many disabled people and the government funded £2 bus ticket scheme is available in the North East till the end of 2024). Travel training supports navigating the public transport system independently, but this is not always available till college. Limited timetables and cuts to bus routes and frequency create problems. These restrictions make many activities difficult, including requirements to travel to Department of Work and Pensions-related appointments. These issues are particularly felt by disabled young people living in rural areas.

Our participants are facing significant barriers to living their lives and thinking about who they want to be in the future. Nevertheless, they are frequently contributing to society and making plans. They find community and friendship in support groups and disabled people’s organisations and seek to ‘pay this back’ by volunteering and working in this area. They also find friendship and community in connections they make with others, for example LGBTQ+ spaces and gaming and animation communities.