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Improving evidence-based practice in schools for children with rare genetic syndromes associated with intellectual disability

Start date

January 2022

End date

November 2022

Overview

Researchers from the University of Surrey have been awarded ESRC funding to create a bespoke online training resource for specialist educators working with children with rare genetic syndromes associated with intellectual disability in the UK.

They will be working with Cerebra to expand existing resources in this area by developing information and training tools that are specifically tailored for teachers and education professionals across the UK.

Dr Joanna Moss from the University of Surrey’s School of Psychology, who leads the project and is a Co-Director of the Cerebra Network for Neurodevelopmental Disorders explains that as the numbers of children diagnosed with genetic syndromes associated with intellectual disability is growing, so too is the need for specific advice and support.

Dr Moss says, “It is critical that the gap between research evidence and clinical and educational practice be addressed in order to mitigate existing barriers to appropriate support and intervention pathways."

In 2019 there were nearly 1.2 million people diagnosed with an intellectual disability in England, 298,000 of whom were children under the age of 18. This figure is set to increase further with a recent government policy paper ‘Genome UK: the future of healthcare’ (2020) outlining plans for new-born screening, which will detect rare genetic syndromes in children much earlier in life. 

Parents of children with rare genetic syndromes are under pressure because they often have to become experts in their child’s condition in order to gain access to intervention and services, which can have a real impact on the quality and effectiveness of the support children receive.

Teaching staff also struggle with limited access to training and information regarding rare syndromes and lack experience of working with other children who have the same disorder. Therefore, condensed and accessible resources on genetic syndromes in schools will become invaluable.

 

Team

Impact

The team, led by Dr Joanna Moss at the University of Surrey and including contributors from the University of Warwick, Aston University and The University of Birmingham, will co-create a widely accessible online training module aimed at teachers and specialist educators, focusing on three key areas:

  1. The lived experience of families caring for a child with a rare genetic syndrome.
  2. Current research findings with a specific emphasis on autism.
  3. The implications of both of the above on a child’s education.

The resources will be developed to actively engage participants through a range of creative approaches including interviews with parents, videos and case studies.

All information will be co-produced through consultation with families and specialist schools which cater for those with an intellectual disability of which there are 17 in Surrey alone.

The module will be launched through the Cerebra Network's knowledge exchange website: http://www.findresources.co.uk and continually monitored for its reach, impact and effectiveness.