New research has revealed that children wait 3.5 years on average for neurodevelopment assessments.
The largest study of needs of families requesting neurodevelopment assessments found that the average time for families waiting on a completed assessment for their children was 3.5 years in public services. This wait time started from when parents first noticed a concern to when they received a comprehensive assessment.
A new paper led by Dr Kelsie Bolton, A/Prof Natalie Silove and Professor Adam Guastella from the Brain and Mind Centre looked at children enrolled from ages 6 months to 17 years with neurodevelopmental concerns, and their caregivers. A total of 916 participants took part in the study.
Lead author Dr Kelsie Boulton says, ‘Parents are noticing concerns by the age of 3 and they are not getting to the assessment service until the age of 6 and a half, so that’s already a missed opportunity.’
Other findings concluded that clinicians were more focused on autism diagnostic needs while caregivers were more focused on non-diagnostic needs.
Only 13% of reports contained recommendations for conditions other than autism spectrum disorder, despite 61% of the population receiving two or more diagnoses. Of these reports, it was found that the language employed was often too complicated for caretakers to understand.
The study aimed to shed light on demographic factors associated with delays, such as parental separation and education status. It found that families with a low socioeconomic status and separated families experienced the longest delays.
We know there are great resources and apps that exist but there is no harmonised collection of those in a unified platform and there’s been no review of what’s good and what’s bad and what’s advisable for families.
Dr Kelsie Boulton
Sydney Health Partners has funded a new project, that aims to shift the wait lists so that families can get assessments faster using innovation and technology. The team at the Brain and Mind Centre will be working collaboratively across multidisciplinary practices to come up with new innovative models to improve current wait time forecasts and assessment outcomes.
Doctor Kelsie Boulton is optimistic that technology can also assist families while they wait for an assessment.
She says: ‘We have some really great examples of how we can use technology to support people and not only support them at the start of the assessment, but across that journey.’
‘We know there are great resources and apps that exist but there is no harmonised collection of those in a unified platform and there’s been no review of what’s good and what’s bad and what’s advisable for families.'
'If we can provide that evidence base as researchers and say to clinicians and families, these are some things that are freely available and can support you while you go through the journey, it’s something that can help them without replacing the need for an assessment or intervention.’
Professor Adam Guastella is the Michael Crouch Chair in Child and Youth Mental Health at the Brain and Mind Centre. Dr Kelsie Boulton is a postdoctoral research fellow at the Sydney Medical School. Associate Professor Natalie Silove is a Senior Lecturer at the University of Sydney.
The authors wish to acknowledge the contributions to this article by Angela Papanicolaou, who is a researcher and senior social worker within the Child Development Unit, Sydney Children’s Hospital Network.