Controlled choice, not choice and control: Families' reflections after one year using the National Disability Insurance Scheme

Introduction At least 40 percent of children with cerebral palsy and their families rely on access to allied health services, assistive technology, and require funding and expertise to achieve skills and participate in daily life. Implementation of the National Disability Insurance Scheme (NDIS) has resulted in a shift to public funding and emphasis on choice and control of services, support and assistive technology to promote social and economic participation. Families of children with cerebral palsy are invested in scheme success and their subjective experiences require consideration if the NDIS is to meet participation targets. Objective The aim of this research was to explore the experiences of families with a child with cerebral palsy, who have been in receipt of the NDIS for 12 months, comparisons to previous funding systems, and recommendations for the NDIS going forward. Methods Purposive sampling was utilised within one specialised paediatric setting. All families received occupational therapy intervention for their child. A qualitative approach using semi structured interviews was employed. Braun and Clarke's six phases of thematic analysis was utilised to analyse the data and explore participants lived experiences. Findings Eight (n = 8) mothers of children with cerebral palsy were interviewed. Three overarching themes were derived from the data: Equipment impacts on all areas of life; Frustration navigating the National Disability Insurance Scheme; and Gratitude, hope and suggestions. Conclusion Families reported challenges navigating the NDIS including administrative challenges and extensive wait times for assistive technology, as well as gratefulness for increased opportunities for support. Occupational therapists and other allied health professionals can assist by: being proactive in service delivery and advocating for the needs of individual families and children; and finding ways to increase the preparedness of the NDIS to better understand the needs of children with cerebral palsy and their families.