In this guest blog, Darren Parnell, a positive behavioural support consultant, discusses his work at MyLife Hartlepool’s service for people with learning disabilities. Darren also has an 18-year-old son with Asperger’s syndrome.
Positive behavioural support (PBS) is a model MyLife is using at its Hartlepool supported living services for people with learning disabilities and autism. I assist staff in putting together support plans for service users.
It can be easy to react to challenging behaviour in a negative and judgemental way, but for people with learning disabilities, such behaviour is often a way of communicating needs or desires. I aim to help MyLife’s staff understand the roots of such challenging behaviour in order to prevent it from happening in the first place.
I start with a functional assessment of an individual. We collate the information that travels with each person, from their family and their current support worker. This includes details about their general care needs and any assessments from speech and language or occupational therapists.
Some of this information may be out-of-date, and we may also be presented with additional insights as a result of a person’s responses to arriving at MyLife which, for them, is a new environment.
For instance, a young person leaving education and moving into a supported living environment may have to cope with losing the structure provided by a five-day week educational setting and have it replaced with living in his/her own home and all of the opportunities and choice that brings. That person’s new home is also a team’s place of work sometimes with shared communal spaces, which can be an immense change for them to cope with.
It can often take 4-8 weeks for a person to settle in. The aim is always to help them adjust in a way that’s meaningful to them.
We may be told about routines or behaviours that were established where they lived previously that never materialise here at MyLife Hartlepool. Plus, the MyLife team and I regularly see new, often positive developments in people when they gain independence and establish themselves in their new home. For instance, they may become more house-proud, developing an interest in, among other things, cooking, cleaning and shopping.
Overall, we want to gain an understanding of people’s challenging behaviours, such as self-injury and acts of physical aggression, the context in which they arise, and develop strategies to avoid them. We build a profile of support that meets their needs and keeps them involved and engaged.
Dylan, (not his real name) who has learning disabilities and autism, is one example. The lead-up to Christmas, with the accompanying disruption to his everyday routine, has always been difficult for Dylan. As a result, he would become very aggressive and damage property. This had led to him being hospitalised in recent years, something no-one wanted see occur again. The whole experience was distressing and destabilising for him and only added to his anxieties over the lack of routine December brought.
However, by working with his family and the local health team, we began to realise that this disruption to his routine was one of the potential setting events for this challenging behaviour. In response, MyLife staff provided Dylan with more space and withdrew demands from some of his daily tasks.
For example, if he didn’t want to attend college that day he was offered alternative activities. He was still encouraged to do tasks around his home but requests were given in a way that weren’t directive, affording him choice and control. As a result, last Christmas was markedly calmer and happier for Dylan – and he wasn’t hospitalised.
PBS fits well with Professor Barry Carpenter’s ‘Six Pillars’ approach to care provision that he has introduced at MyLife. Historically, we have built services based on people's disabilities but what I, Professor Carpenter and everyone else at MyLife aim to do is to build a service based on abilities.
It was heartening to see PBS recognised in Sir Stephen Bubb’s February report, ‘The Time for Change – The Challenge Ahead’. He is right that we need a national accreditation scheme delineating set standards of practice. I would like to see legislation to support this.
Until then, it’s down to care providers to invest in training as MyLife is doing, to give staff the tools to give service users the best support, choices and quality of life.