Getting the Best from DisabilityCare Australia: Families, Information and Decision Making: Report of a Project Undertaken for the Practical Design Fund Department of Families, Housing, Community Services and Indigenous Affairs

The aim of the present study is to reach an understanding of how best to provide information and support to families of young children with disabilities so that they can effectively utilise the individual funding model that has been adopted by DisabilityCare Australia. In particular, it aims to examine how the internet can be used as a conduit to build the capacity of families who have young children with disabilities to enable them to make effective decisions about intervention and support

How do parents acquire information to support their child with a disability and navigate individualised funding schemes?

With the international trend towards individualised funding packages that allocate funds to individuals to spend on disability support needs, the challenge of ensuring parents can readily access useful information to make decisions becomes paramount. The present research used a two stage, mixed method sequential approach (with 291 parents surveyed and 56 parents participating in focus groups) to determine how parents acquire information to enhance their understanding of their child’s disability and determine how to use an individualised funding scheme to benefit their child and family. Parents attested to the importance of person-to-person communication and valued information that originated from other parents of a child with a disability, and from professionals who knew their child. Parents also spoke about the limitations of the internet, noting that reliance on the internet could cause confusion as the validity of information could not be assured. Early childhood intervention services emerged as a key instrument in developing the capacity of families to make informed choices. Understanding families’ perspectives on the utility of information sources is critical and timely as policy-makers and service providers within the disability sector shift practice to meet the rise of individualised funding internationally