Professor Sally Holland, Children’s Commissioner Wales
Distress caused to young people and their families due to issues around transitions from children’s to adult services is a persistent issue which I see far too often. If transition arrangements are handled poorly, with children and their families not meaningfully involved in the process and left feeling abandoned, the consequences can be far reaching.
I hear far too often from young people, their families and professionals about situations which are Kafkaesque – a young woman woken at 2am from her hospital bed on her 18th birthday by two men she did not know and told she will be moved to an adult ward because she is now 18; a young person experiencing a mental health crisis being placed on an adult ward because there are no appropriate beds for them; or an inability to anticipate the need for a joint care plan between agencies when a young person turns 18 despite the fact they has been known to all relevant services for years.
Back in 2018, I published a report called ‘Don’t Hold Back’. The title was taken from something a young person with a learning disability said to us: ‘Don’t hold back or be ashamed of your disability’. For young people not to hold back, they need to not be held back; by a system which doesn’t step up to meet their needs regardless of thresholds, and which doesn’t truly appreciate them as the expert on their care, and an active partner in their care plan and decision making.
Key messages from that report, which brought together findings from a consultation with 99 young people with learning disabilities, 187 parents and carers, and 43 professionals included:
- Young people’s participation in planning and decision-making for their needs appears to be very low
- Some young people face a considerable change in how much support they receive after the age of 18 due to different thresholds
- Every service has different ways of transferring to over-18s services. Having a key worker or transition service is very valuable.
- Young people, parents and professionals all agree that young people with learning disabilities are still expected to slot into services that already exist, with limited options if that doesn’t fit their needs
The report made a series of recommendations which included:
- Updating guidance on multi-agency transition planning
- Ensuring young people play an active and central role in their care planning
- Ensuring young people receive clear information about and access to advocacy, and their entitlements
- Integration of services through the work of Regional Partnership Boards
Despite some positive developments which I outline below, I continue to be concerned by the lack of significant progress in several of these areas.
The Welsh Government’s new ALN Code sets out considerations that need to be taken in transitions planning. This includes multi-agency involvement, and outlines the key role that Individual Development Plans play in transitions planning.
I am pleased to say that several Regional Partnership Boards are now undertaking dedicated work in this area. Some are also doing well on involving young people and families in advising them. There is soon to be published new Welsh Government guidance on transition planning. However, while this guidance emphasises the need for multi-agency planning, it is only for Health Boards to implement.
We are still having to push for advocacy in health services to be available right across Wales.
There are some encouraging signs in some areas, but are we seeing the culture shift we need which will mean young people experience seamless support as they move into adulthood?
Three years on, progress is painfully slow, but there are some green shoots that we hope will grow into solid structures of young person-led, joined-up multi-agency support for young people with learning disabilities as they move from children’s to adult services.