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The Cornelia de Lange Syndrome Be-Well Checklist:

Helping parents, carers and professionals to reduce challenging behaviour and improve the wellbeing of people with Cornelia de Lange syndrome.

In January 2022, the research charity Cerebra published 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, such as Cornelia de Lange syndrome.

When someone has Cornelia de Lange syndrome, 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 affect someone’s quality of life, and they are often linked to each other. Importantly, if someone has Cornelia de Lange syndrome then some of these things are more likely than others and they may be difficult to identify. So it is important to have a Be-Well Checklist that is designed specifically for people with Cornelia de Lange syndrome.

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. It is also important to take into account the cause of someone’s learning disability and for this reason we have developed a Cornelia de Lange Syndrome Be-Well Checklist that is sensitive to the characteristics of the syndrome”.

The Cornelia de Lange Syndrome Be-Well Checklist is a list of the things that are important to assess when thinking about the behaviour and wellbeing of people with the syndrome and is used alongside the generic Be-Well Checklist that can be downloaded here or from the Cerebra website. Using the list makes sure that these things are not missed or forgotten.

The Cornelia de Lange Syndrome 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 Cornelia de Lange Syndrome 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.

Further guidance on using the checklists can be found on the FIND website:
https://www.findresources.co.uk/be-well-checklist

Download both checklists by clicking their images (both should be used together):