The transition to adult services when a child with complex needs turns 18 can be a difficult one.
“Historically children’s services and adult services are very much two separate entities. Work priorities have meant that communication between the two services has not always been as effective as it could be,” says Sandra Deane, a divisional manager at Liverpool city council.
A report from the Care Quality Commission (CQC) found that parents and young people were often “caught up in arguments between children’s and adult health services as to where care should be provided”.
To address this, the 2014 Care Act placed a duty on local authorities to conduct transition assessments for children, children’s carers and young carers when the child turns 18 with the aim of making the transition smoother for the young person and their family. Good practice guidance has been issued by Social Care Institute for Excellence (Scie) and the National Institute for Health and Care Excellence (Nice) is planning to issue new guidelines in February 2016.
The CQC report recommended that management of the transition should be better co-ordinated and centred around the needs of the individual child.
In Liverpool, a transition team is being formed that brings together the different agencies. Deane says the team has to tackle multiple issues, including budgets (children’s care can be more expensive than adults’ care); providing young people with personal budgets so they can manage their own care; developing support for young people who lack mental capacity to choose their own care package; and helping parents adjust to their child’s independence if they move out – something that many parents find difficult.
Currently, there can be an abrupt change in provision when a child reaches 18. As Nicky Urding, a service manager at Liverpool city council, points out, however, children’s needs often start changing in early adolescence, as their increased size and strength can make them more difficult to care for. One major change Liverpool will make is to begin the transition process earlier, at 14 to 16, “with a view to a social worker carrying that child’s case on from at least 16 to 25, if not beyond”. The years from early adolescence to early adulthood should in future be managed by a single social worker, Urding adds.
For 21-year-old Kyle Pennington, who lives with his widowed father Jon in Liverpool, the transition has worked well. Kyle, who has severe learning disabilities and is on the autistic spectrum, attended a special school until the age of 19. The council provided a part-time carer to look after him between the end of the school day and his father arriving home from work.
In the year before leaving school, Kyle, along with his fellow pupils, was allocated a social worker to help him make the transition to adult services. “They did an assessment on Kyle and also did a carer’s assessment on me, and assessed what care I would need to help us through the transition as seamlessly as possible,” his father says.
Kyle began attending life skills courses in college two days a week and the Lime community hub, a state-of-the-art day centre for people with learning disabilities, on the other days. Because he wasn’t happy at college, he now attends the day centre five days a week, where he takes part in a variety of activities, including using the hydrotherapy pool, attending Zumba and yoga classes and taking part in a music group at another venue.
“Sometimes they go onto transport as well and he’s taught how to pay and use his bus pass. So they teach him some life skills as well,” says Pennington. Kyle loves it, he adds: “Sometimes when I’m off work, I ask him if he wants a day off and stay at home, but he doesn’t – he wants to go into the day centre.”
Pennington has been hugely impressed with Lime community hub. “They look at the needs of the person rather than the needs of the centre,” he says. “It’s not Kyle who fits in with the day centre, it’s them who fit around Kyle.”
Another challenge that needs to be addressed is the management of healthcare services. Lizzie Chambers, development director at the charity Together for Short Lives, leads a transition taskforce that brings together players from health, social care, education, housing and employment to think about the needs of young people with complex health needs. “Adult health doesn’t neatly map onto children’s health services, so in children’s services you have a paediatrician who is specialised in children’s health and helps co-ordinates thing for you. In adult healthcare it’s much more fragmented,” she says. Some young people with complex healthcare needs, she adds, are left in a “sea of adult care where the focus is very much on the elderly”.
Some services disappear altogether as children get older. Urding says that while children’s services are good at providing a co-ordinated package of care for young children (including, for example, days out and respite breaks) that draws in expertise from the council, the NHS and outside agencies, there are often limited equivalent services available for teenagers and adults.
However, fundamental changes to staff structures in adult social care as well as integration of services with NHS provider Liverpool community health means that barriers are quickly coming down. Adds Deane: “We’re soon to be moving to a model where adults’ social workers will be physically based in neighbourhoods as far as possible with colleagues in health. We’ve been running a pilot with one team and are very impressed with the difference this has already made with decisions being made quickly and in a co-ordinated manner.
“Also, we’re working on a new procurement framework that could include a requirement that agencies currently providing services for children extend them to young adults. It’s our hope that transition will not just be smoother, but it will be seamless.”
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