The experiences of families of children with cerebral palsy and complex disability after three years accessing the National Disability Insurance Scheme.

The National Disability Insurance Scheme (NDIS) provides funding for people with permanent and significant disability. Children with cerebral palsy (and other complex disability) are lifetime users of the NDIS. For children with complex disability, their families are crucial to ensuring that their daily needs are being met, including providing medication. Previous research indicated that parents rely on the NDIS to support their children; however, there have been various challenges such as long wait times for equipment and difficulty understanding how to use the scheme. This study explored the experiences of families of children with complex disability, after more than 3 years of being an NDIS participant. Eight parents from one therapy service provider completed a short questionnaire about themselves, their child, and their family, followed by an interview with the first author. Four authors (occupational therapists) worked together to design and implement this study. The findings highlighted several key points: the important role of parents as caregivers; parents became more knowledgeable and confident to navigate the NDIS with time; equipment funded by the NDIS was life-changing; the NDIS has ongoing issues; and the crucial nature of the NDIS. Occupational therapists can be extremely important to families, including with supporting families to navigate the NDIS and advocating for them. Occupational therapists must stay current with their knowledge of the NDIS as they provide lifetime support, including prescribing equipment, technology, and home modifications.