How can we support young people with complex needs to make a positive transition?
Transition from children’s to adult services can often be dominated by the difficulties of managing the multiple systems and stakeholders. Much time and many resources are invested in ensuring that each young person moves on to the right service. However, it is easy to neglect the young people’s own process and understanding of this critical transition, which often represents for them, leaving what they have come to understand as home – leaving friends, familiarity and security.
At our centre for specialist learning, we have been learning how to support young people with multiple disabilities, complex needs and visual impairment to engage with their transition from our service. Our young people, due to each of their unique combination of needs, often have lower levels of resilience for transition. It is essential that we keep the focus on the young person and ensure that they are supported to engage with the transition process in a manner which maximises the chances of them understanding and accepting the process. We need to ensure that, rather than regressing through the trauma of transition, they take all they have learnt with them.
The term “transition” is commonly used to apply to the move from children’s to adult services. This has received increasing amounts of attention and investment, with many social services departments now having specific transitions teams. This probably reflects the complexity and repeated inadequacy of young people making transition to adult provision and life. However, it is unlikely that a transitions worker – who is often new to the young person – will know specifically how to engage the young person in the process. It is essential that we partner with the transitions team to achieve the right future placement at the right time and also that those who best know the young person lead how the young person will engage with the transition.
Tracking a young person’s relationship with transition
Each young person’s engagement with transition will be unique; it is essential that we understand an individual’s specific lens on the process. Prior to a young person moving from children’s to adult services, it is important that we investigate how that individual relates to transition.
“Transition” can be defined as “a passage from one form, state, style or place to another”. Some young people may struggle with very simple transitions, such as changing from one activity to another, one staff member to another or one room to another. Understanding the support a young person needs to manage these transitions well, will inform how to support them with their transition from the service.
It is particularly useful to track the larger transitions that a young person will inevitably have to engage with whilst using a service. Useful naturally-occurring transitions might include:
- changing classes at school
- moving from one bungalow to another
- moving bedrooms.
Social imagination and anticipation
Social imagination allows us to anticipate events and prepare for them. Many of our young people have problems with social imagination. This should inform how we support them to engage with transition.
Change or new experiences are typically managed through imagining various scenarios and rehearsing the possibilities in our own minds. We anticipate new experiences through our imagination. For instance, if going to a conference for the first time at a new venue, we would intuitively run through the likely parameters in order to prepare ourselves for that which was unseen and that which was predictable – we would assume that there will be refreshments, regular breaks and toilet facilities, based on similar events we had attended. We might imagine a scale for the facts that we weren’t sure of: maybe there will be between 50 and 500 people attending; maybe there will be between five and ten sessions of speakers; maybe some of the sessions will be more interesting than others and we’ll assume it will come to an end and we will be able to return home.
No-one will have told us these things explicitly, but we use our past experience to build up an imagined and reasonable picture. This helps us to manage anxiety about the unknown. It helps us anticipate and plan, and this means we can go into an unknown venue with unknown people to hear new information from people we don’t know, with a level of confidence.
Autism and complex needs means there are considerable problems with social imagination.
If faced with a major life transition, such as leaving school and moving home simultaneously, many people would want as much time and information as possible, to help build an accurate picture of the next step. However, lots of time and information, when it cannot be well-formulated into an imagined picture, can often only serve to create anxiety.
We need to tailor-make transition plans that hold this in mind, managing time-frames and information that reflects the young person’s capacity to anticipate change.
Fareh has a visual impairment, some useful vision, autism and a learning disability. He is non-verbal with a history of challenging behaviour which has reduced significantly.
He recently made a transition within our service, moving from one bungalow to another. It was a key opportunity to learn about Fareh’s capacity to anticipate. We knew that Fareh could comfortably hold in mind transition information for several days, as he went home every month, and his mum would often tell him about this on the phone several days in advance.
A lot of the familiarisation work could be done without talking about transition, so Fareh visited the other bungalow at every opportunity in the preceding weeks and went out into the community with what would become his new housemates. We ensured that visits involved favourite activities so that we built up a bank of positive memories and associations for Fareh. But we did not discuss the transition with Fareh during this time.
Ten days before, Fareh’s key-worker had a brief chat with Fareh about the move and took him for another visit. Fareh saw what would be his new bedroom and was supported to choose a colour for the walls to be painted. He visited every day up until move day, sometimes taking personal items with him and leaving them in his new bedroom. This helped him engage in a slow transformation of emptying his current bedroom and filling up his new one.
Fareh loves to take photos, so he took his camera for every visit. He was supported to take photos and have his photo taken in his new bedroom with the staff and other young people. We supported Fareh to compile the photos into a transition diary with captions. This diary was put together during the transition week and it became a significant tool for Fareh. He was able to show the diary, of which he was proud, to other staff members or visitors, and they were able to talk to him about the process that Fareh was engaging in. Rooting it in the physical, and in a medium that Fareh enjoyed, helped it be a positive process.
In addition, we ensured that Fareh’s mum was involved in the process, talking to her about it over the phone and then encouraging her to talk with Fareh about it when he visited home. This engagement of family in a move is always essential because it reassures the young person that his family knows about it and approves. Many young people with complex needs will not make assumptions, so it is important that the young person knows explicitly that his family know where to find him when he moves.
Fareh moved to his new bungalow with great enthusiasm after ten days.
Annabelle has multi-sensory impairment (MSI) and she has had no useful vision or hearing from birth. She also has a learning disability.
Annabelle transitioned three times within our service during the eight years she was with us (moves from one bungalow to another). Each time we learnt a little more about the key factors that helped Annabelle engage with and understand the process, and this informed the process for her move to a new adult provision.
We focussed on a sensory approach with Annabelle. We arranged two months of visits from the new team to build relationships and familiarity. Staff each chose an “identifier” which was unique to them, so Annabelle could quickly identify them. This could be a perfume, a ring, or something that they would have on their person every day.
Smell was essential to Annabelle. She went out shopping and chose a scent that she liked and it was sprayed on her bed every day. The new home did the same, so that she could identify her new bed as hers. We also avoided buying new bedding, instead transferring the bedding she slept in the previous night on move day. We had used this technique with previous transitions.
Annabelle made one visit and took some of her personal items; this gave her the opportunity to experience her bedroom smell and her belongings in a new location. We also ensured that her parents were in her new home when she visited, to reiterate that they were part of this new place and knew where she was.
We carried out one day of training with the new team, helping them to begin to see the world as Annabelle sees it and think about their environment from an MSI perspective. We also explained Annabelle’s communication system, which is specific to her.
Annabelle transitioned very positively, relying on the relationships she had built with the new team, the understanding the team had gained about her, and the familiarity of her “new” bedroom, which felt as much like her previous one as possible.
Learning through success and failure
While the transitions outlined above were both successful, transition is incredibly complicated and does not always go as well as we might like: maybe we get the time-frame wrong, maybe we misjudge the levels of information a young person can engage with, or maybe the systems and structures fail so that the young person does not get the right exposure to new staff or the new home. Transition to a new service is fraught with practical problems that are not always overcome. A repeated issue is the juggling of appropriate time frames for the young people, against the pressure of funding moving on to the next service. Suffice it to say, we have probably learnt as much from reflecting back on less successful transitions as we have from those that have been effective. It is important that we resist the urge to put less effective transitions behind us, but instead reflect and establish mitigating structures and practices to improve future transitions.
Making transition work
Transition is a physical, emotional and sensory journey that takes into account the needs, wishes and aspirations of the young people.
It is important that the journey enables the young person to carry forward known, loved and familiar possessions, routines and patterns.
Transition can be supported by the use of familiar smells, objects and tactile and sensory cues.
Deliver transition at a pace and manner suitable for the individual, thereby minimising anxiety and stress.
The bedroom is important. It is the place they can most be themselves. It is essential it feels, smells, looks and sounds “theirs”.
Transition should be planned by people who best know the young person, and involve future staff to optimise consistency.
It is critical to involve families.
Transition is not an event; it is a process and takes time.
Fiona Minion is RNLD Behavioural Nurse Specialist and Beverley Samways a Team Leader at RNIB Pears Centre for Specialist Learning:
All names have been changed and the children pictured are not those mentioned in the article.