Social Attention and Communication Surveillance- Tasmanian Implementation Frequently Asked Questions

1. What is the evidence of the SACS-R tool for use in the community?

The social attention and communication surveillance (SACS) tool has been developed and researched over the past 10 years in Australia. Data has been collected in this time in over 30,000 children by Maternal Child health nurses across regions of Melbourne, Victoria during their 12, 18 and 24- month routine child health consultations. SACS has undergone a revision (SACS-R) and research continues within Victoria following up these children, which has confirmed diagnostic stability at preschool and school age. Overall, published results demonstrate high rates of positive predictability, sensitivity and specificity. Additionally, rates of negative predictive validity will be determined upon the completion of the Victorian study in 2017 (references available upon request)

The Tasmanian arm of this research project is a partnership between the Department, University of Tasmania, Olga Tennison Autism Research Centre at La Trobe University and the Autism Cooperative Research Centre. The results of the proposed study will further contribute to this growing body of evidence for the use of the SACS-R as a community based developmental surveillance approach to monitor young children allowing for additional unique comparisons within a rural and regional state.

2. Why implement SACS-R as method of surveillance rather than pre-existing screening tools?

Until recently, attempts at screening large populations of children for ASDs suffered from poor sensitivity, consequently missing many children later diagnosed with an ASD, or identifying many false positives, consequently identifying many children who did not go on to be diagnosed with an ASD. Therefore, there is no screening tool to date with sufficient psychometric properties to recommend universal screening. Given these issues, the utility of developmental surveillance (rather than screening at one age) for the identification of ‘at risk’ infants and toddlers in a community-based setting has been investigated resulting in the development of Social Attention and Communication Surveillance (SACS-R) tool.

3. Does early diagnosis (and therefore early intervention) help?

Research demonstrates that early intervention provides the best opportunity to move a developing child toward a more typical developmental trajectory, leading to improved developmental outcomes for the child, reduced stress on the family, and reduced long-term costs for governments. Currently, the average age of diagnosis in Australia, and specifically in Tasmania, is 4 years, resulting in a window of missed intervention opportunity for many. Research shows that by enabling earlier access to intervention, via early identification and diagnosis, children have better cognitive outcomes with only few meeting criteria for an intellectual disability. Version 1.1 12/2016 Email enquiries to disandcommservices@dhhs.tas.gov.au Ph. 6166 3578

4. What does ongoing surveillance using the SACS-R involve?

Anyone who has completed training in the implementation of the SACS-R is able to undertake surveillance with children under 30 months attending their service using this tool. With respect to the research project, all children who attend their ChaPS universal health checks will undergo SACS-S surveillance and families will have the option to opt out of having their data used for research purposes.

5. How will a child be referred to St Giles?

CHaPS nurses will discuss results with parents of children who return an atypical result on three key items of the SACS-R, and will be offered a referral for a full developmental assessment with St Giles. Each parent may have different questions or comments as a result and CHaPS nurses will use their own clinical expertise to address parent’s questions within their professional boundaries. CHaPS nurses will complete the Developmental Assessment Team (DAT) referral form along with details of the SACS-R results and forward this to St Giles. In addition to this any other referrals can be made as per current standard practice e.g. to a GP for referral to a Paediatrician. A member of the DAT team will make contact the family to arrange an appointment, and also discuss possible reasons that children are not meeting these milestones which will be explored throughout the assessment process. CHaPS nurses will continue to also make referrals for intervention as part of standard practice and as required.

6. Will this effect St Giles Developmental Assessment Team waitlists?

St Giles has received separate funding to support the implementation of the SACS-R project across the state to ensure no impact is had on business as usual.

7. What happens after the assessment?

Based on the results of the developmental assessment at St Giles/ASELCC, and the identified needs of the child, recommendations regarding interventions will be made and referrals will be initiated as per standard practice of St Giles and the ASELCC. If a child receives an ASD diagnosis, they will be directed to Autism Tasmania for advice and support around funding and provider options.

8. Will children see a Paediatrician?

At the point of first contact the St Giles staff will check with the family if a current paediatric referral is in place. If not, they will be supported to visit their GP to initiate a referral. Where a Paediatrician is already involved, with parental consent, contact will be made throughout the assessment and a copy of the report provided upon completion.