Update on the NDIS ILC “PWS First Responders Kit” Project
Earlier in 2020, the Prader-Willi Syndrome Association Victoria (PWSA Vic) received an Information, Linkages and Capability Building (ILC) grant from NDIA to put together a ‘First Responder PWS Kit’ – the Kit, for use by Ambulance, Police and the Fire Brigade in the event of first responders coming into contact with a person with PWS. As a part of this project, we are collaborating with Monash University Information Technology (Monash Uni IT) to produce a ‘fit for purpose’ solution for first responders.
Due to the low incidence of PWS in the general population it is unlikely that many members of our emergency services will have heard of PWS. But we also know that when the members of the emergency services have some understanding of Prader-Willi Syndrome and its complex behaviors, it can have a positive effect on outcomes.
The first stage for developing the Kit involves producing online educational resources for use by First Responders as well as for support providers, schools, and parents. For the second part of the Kit we are collaborating with Monash Uni IT to produce a ‘First Responders technological solution/app’.
We have made a start on collecting the information and resources we will need for the Kit. I would like to say a big thank you to the PWSA VIC members who have already completed their zoom interviews and contributed ideas and insights. I would also like to thank the Disability Providers, Disability Support Staff, Allied Health Professionals and First Responders who have also taken part in this process. However, the Monash IT team is still looking for parents of children with PWS who have had interactions with emergency services, both in metropolitan and regional areas, to be interviewed about their experiences. Anyone in the PWS community who would like to take part in the project via interview or written contributions, or for more information on the project please get in touch via email at firstname.lastname@example.org.