Case study 2: Sussex Partnership NHS Foundation Trust (Learning Disability)

Background

case2Gary is a 37-year-old man with learning disabilities who also has a diagnosis of autism. These factors impact on him to the extent that he has no spoken language, major skills deficits and some challenging needs – he has behavioural outbursts which put himself and others at risk and cause serious damage to the environment. Like many people on the autistic spectrum, predictability and familiarity are very important to him, and he can become very distressed when faced with sudden and unexpected changes to his routine and when the world becomes a confusing place.

Gary moved out of the family home when he was nineteen and entered residential care. Sadly, this did not go smoothly; for the next five years he was moved from one placement to another as each failed to provide appropriate care and support for him. There were a range of factors to account for this including inadequate planning, poor management, low levels of unskilled and inexperienced staffing, co-resident incompatibility and so on. By the end of a third unhappy placement, Gary was extremely distressed and his behaviour had deteriorated alarmingly.

Personalised interventions

It was at this point that a single-person service was commissioned for Gary, predicated on the Positive Behaviour Support (PBS) model. PBS promotes a highly person-centred approach to service design so that the service is tailored to individual need. Accordingly, interventions are based on a proper functional analysis so that the causes of challenging behaviour, rather than the symptoms, can be effectively addressed. However, PBS is not simply concerned with reducing challenging behaviour; it is, equally importantly, designed to address the wider questions regarding lifestyle and personal development. In Gary’s case a service has evolved which, increasingly over time, has provided him with:

    • A timetable of activities that reflects his preferences and needs;
    • Opportunities to develop new skills relating to, for example, choice-making, communication and daily living;
    • Predictability and consistency of routine;
    • A stable staff team who know him well and who are effectively managed; and
    • A robust organisational framework of service delivery whose component parts work together in a logical and coherent way.

Outcome

Gary has now lived alone, with staff support, for 12 years. He has a rich and varied community-based schedule which allows him to carry out the ordinary activities of daily life as anyone else might do, attend health appointments when necessary, have holidays and follow other leisure pursuits, eat out in pubs and restaurants and so on. Importantly, he now sleeps well at night – which had previously long been a problem – and this represents just one significant measure of positive change.

He has come a long way from the forlorn figure he had become 12 years previously – angry, depressed, confused and disengaged from life. Since that time much productive effort has been invested in providing a truly person-centred service which has demonstrated the potential for change to occur even in the most unpromisingly extreme circumstances.

Sources:
Shephard (2012) In celebration: living a life through Positive Behaviour Support. Tizard Learning Disability Review Volume 17 Issue 2 2012
Baker & Shephard (2005) The rebranding of behavioural approaches for people with learning disabilities and challenging behaviour. Learning Disability Review, 10,2. 12-15.