Today we are publishing the innovative Be-Well Checklist designed to help parents, carers and professionals improve the well-being of people with severe learning disability and complex needs.
People with severe learning disability and complex needs need a lot of support in their daily life and often find it hard to tell other people what they need or want, or how they feel. They might also have physical disabilities or problems seeing and hearing as well as some autistic characteristics or a genetic syndrome.
When someone has a severe learning disability and complex needs, it can be difficult to know how they are feeling or why they are showing a particular behaviour. Research and clinical experience shows that when it comes to challenging behaviour and well-being, there are important things to consider that are often missed. These are: pain and discomfort, sensory sensitivity, anxiety, sleep difficulties, emotional control, impulsivity, insistence on sameness, and differences in social behaviour. These things can each cause challenging behaviours and effect someone’s quality of life, and they are often linked to each other.
It is also very important to consider whether challenging behaviours are the way a person accesses something they need or want, and whether the person has difficulties communicating to others what they need or how they feel. Not having an effective way to access things, activities and people can cause challenging behaviours and reduces quality of life.
The Be-Well Checklist was written by a research team led by Professor Chris Oliver, Emeritus Professor of Neurodevelopmental Disorders at the University of Birmingham. Professor Oliver explains: “Challenging behaviours have many different causes and some of these, such as pain and anxiety, are often overlooked. Making sure that all possible causes are assessed is the first step to improving wellbeing and behaviour but it can be hard to know where to start. Carers, parents and professionals need a checklist of all of the important causes to work through together and keep track of someone’s behaviour and wellbeing. The Be-Well Checklist is a tool that will help everyone involved to do this”.
The Be-Well Checklist is a list of the things that are important to assess when thinking about the behaviour and wellbeing of children and adults with severe learning disability and complex needs. Using the list makes sure that these things are not missed or forgotten. The checklist is in two parts: the Be-Well Checklist itself that describes the items and what to look for, and the Be-Well Record that keeps track of what might be important and how things are going.
The Be-Well Checklist can be used by parents, carers and professionals when they are trying to work out why someone is showing a behaviour or might be distressed, angry, upset or appear to have very low mood. It can also be used at regular review meetings or any other time to help make sure someone’s quality of life is as good as it can be. The Be-Well checklist makes sure that the important things are discussed and thought about, so that carers, parents and professionals can decide together which assessments and treatments might be helpful.
To support the new Be-Well Checklist Cerebra is also publishing three new parent guides:
Cognitive Differences: Inflexibility and Impulsivity: to help parents understand differences in how thoughts might be processed in children with different neurodevelopmental conditions and offers an insight into what can be done to manage the related difficulties.
Communication with Children with Severe or Profound Intellectual Disabilities: to help families and carers understand more about communication challenges and to suggest helpful strategies to improve communication.
Emotional Outbursts: to provide information about emotional outbursts for parents of children with intellectual disability.
Beverley Hitchcock, Acting Head of Research and Information at Cerebra, said: “We are delighted to be publishing these resources today. All of the research we fund is driven by what families tell us they need. It’s very rewarding to see that research come full circle and be translated into informative, easily accessible, and reliable information resources. The Be-Well Checklist and our Parent Guides will make it easier for families, carers and professionals to get the knowledge they need to overcome challenges and improve well-being in children with severe learning disability and complex needs”.
The Be-Well Checklist and all of the associated parent guides can be downloaded free of charge here.
Professor Chris Oliver established the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham in 2008 and developed a world-leading research programme, through which the behavioural, emotional and cognitive characteristics associated with complex disorders and rare genetic syndromes have been documented. This research has been instrumental in raising awareness of the significant, but often neglected, clinical need that is evident in these populations.
In the next phase of this research programme, the Cerebra Network for Neurodevelopmental Disorders are making an exciting transition into a collaborative and dynamic network of researchers. The Cerebra Network for Neurodevelopmental Disorders is led by four alumni of the Cerebra Centre; Dr Caroline Richards (University of Birmingham), Dr Jo Moss (University of Surrey), Dr Jane Waite (University of Aston) and Dr Hayley Crawford (University of Warwick). Network research hubs located at each university are focussing on key themes that are central to improving the lives of individuals with severe and complex needs and their families including research into sleep, atypical autism and mental health, while continuing their work on self-injurious behaviour and pain in this population.