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In Dyspraxia Awareness Week the key focus is on the 1 million adults in the UK with dyspraxia and the need for adult services. However, we need to also recognise the long-term impact that dyspraxia (also known as developmental coordination disorder; DCD) has on the whole family including parents and siblings – emotionally and economically.
The first international study focusing on the hidden costs of DCD has recently been published by Professors Amanda Kirby, Paula Lorgelly, and Dr Mary Cleaton. The findings from the study show the high level of impact on the whole family, when one or more children have dyspraxia.
Professor Amanda Kirby is CEO of Do-IT Solutions, and an internationally recognised expert in DCD. Her experience as a parent of a child with DCD was the reason for working in the field of Neurodiversity as well as developing tech solutions to help.
Professor Kirby said: ‘I have spoken to many parents who have described the impact on their mood and well-being, with a significant number being anxious or depressed themselves. There is a sense of frustration that many older children end up in child and adolescent mental health services because there are a lack of appropriate adolescent and adult services. Additionally, many mothers have described having to make a career choice in order to provide the additional support their child needed.’
A significant number of the 300 parents who completed the research reported spending an average of £750 in the six months prior to the survey in direct medical costs. The cost of support, including paying for extra clothing and providing additional activities to support their child was an additional £500 per family in the past six months, plus the intangible costs of lost leisure and work time.
Disturbingly, the findings highlighted the number of parents who had given up work, started working part-time, reduced their hours and/or used flexitime to allow them to ‘never’ take time off to attend appointments.
Sophie Kayani, Chair of the Dyspraxia Foundation commented: ‘Dyspraxia is often referred to as a “hidden disability” and one of the hidden aspects of the condition is its economic and emotional impact on the whole family. Dyspraxia Foundation welcomes publication of this important report which highlights the need for greater practical and emotional support for families of children with dyspraxia, and better mental health support for young people, particularly older teenagers.’
Direct medical costs were £756 (children aged 6–11 years) or £712 (children aged 12–18 years) in the six months prior to survey. Of note, 48.8 % of the total direct medical costs and 65.7 % of the public direct medical costs for children aged 12–18 years was for mental health services.
Other costs were only calculated for those who had incurred costs, not for the whole sample. Indirect costs among those reporting that their child had received therapy, were £574 in the six months prior to survey when taking the human capital approach – counting lost leisure time as well as lost work time. However, this was highly negatively skewed, likely because of how many parents had given up work, started working part-time, reduced their hours and/or used flexitime to allow them to ‘never’ take time off to attend appointments, etc.