What do parents of young people living with disabilities – and also cognitive and mental health conditions - mean when they refer, sometimes fearfully, to 'the cliff edge'? Ewan King, Director of Business Development and Delivery at the Social Care Institute for Excellence, steers clear of any Brexit references and unpicks these three portentous words in the context of care and support for young people and their families.
The cliff edge is the point at which a child turns 18 and they stop receiving some of the services they previously received. It can leave young people and families feeling disorientated and without adequate support.
Mental and physical health conditions are not magically resolved on a young person’s eighteenth birthday. To avoid this arguably arbitrary delineation, we need to be better at transitions - making sure continuity of care is maintained as children become adults.
This is how it can feel for a parent:
In my experience the teams did not work together. They each did their separate thing. When Rebecca left school, she was left with without regular support or advice. When she turned 18 we just stopped receiving information. Emails and phone calls didn’t get answered.
Why is this happening? There are many reasons:
- Eligibility criteria can differ between adult and children’s services;
- Commissioning processes may differ between adults’ and children’s services;
- There might be disparity in benefits entitlement between children and adults;
- Young people can be left without adequate information or support when they become adults.
Then there are sometimes gaps in service coverage when someone becomes an adult, a situation exacerbated by funding cuts. So a child, for instance, who previously found it easy to access training opportunities when they were under-18, might suddenly find that these services don’t exist when they reach that age of majority.
So how do we do it better?
Firstly we need improve our work with young people and families early on, making sure there are good plans in place to help them through periods of transition. We shouldn’t wait until someone is 17 and about to leave children’s services.
Secondly, we need to instill a culture and practice of strong joint working – or co-production - between young people, parents and practitioners. Brighton and Hove Council has been highly commended for this approach, with young people and parents closely involved in planning how support will be accessed and provided once adulthood;. supported by good local advocacy and parents’ organisations.
Thirdly, we need to develop a strength-based approach which focuses on what is positive and possible for the young person, rather than on a pre-determined set of transition options. Through conversations with young people and their parents, we need to get to know what really makes that person tick and what they want to achieve when they get older. This approach can help open practitioners’ minds to what other possibilities might exist for a young person locally.
Coordination is key.
Fourthly, young people who receive support from social care and health should be allocated a single practitioner – who should act as a 'named worker' – to coordinate their transition care and support. We’re already seeing examples of this approach with the trialling of named social workers - with a particular remit for mental health, learning disabilities and autism - in six English councils.
Meanwhile, Hampshire County Council identifies and works with young people from the age of 14. They help them identify how they will access good housing, employment, training and leisure opportunities from the age of 18, working with commissioners from both adults’ and children’s services.
Finally, young people and their families need to know what support and services are available; and this is not always the case. Legally, local authorities must provide what is called a ‘local offer’, setting out the services available in that area. These can vary in quality and accessibility, but some are developing good local provision. For example, Ofsted commended Gloucestershire’s offer for providing a “wealth of information to support families. Staff carefully monitor its quality and its appropriateness to meet education, care and health needs in the local area.”
Rebecca has found life very hard since she turned 18. There is much we can do to make sure that young people like her receive better support in the future.
For more information see the NICE guidelines.