Lived experience of parents and carers of people receiving services in rural areas under the National Disability Insurance Scheme.

Objective: The purpose of this study was to investigate the lived experience of parenting or caring for a person with a disability receiving services under the National Disability Insurance Scheme in rural Australia.

Design: Qualitative study guided by the phenomenology of practice.

Setting: Rural areas of New South Wales (MM 3-7).

Participants: Participants were 5 parents and one carer of people receiving National Disability Insurance Scheme services who resided in rural New South Wales.

Design: Participants engaged in a semi-structured interview about their lived experiences caring for someone accessing services under the National Disability Insurance Scheme in rural New South Wales. Interviews were audio-recorded, transcribed verbatim and analysed thematically.

Results: Three themes emerged from the data analysis. 'More than a disability' described the absence of understanding of family and carer challenges when National Disability Insurance Scheme plans were designed and implemented. 'Fighting for funding and services' described that while the National Disability Insurance Scheme increased funding support, parents and carers experienced limited support navigating the National Disability Insurance Scheme. 'Cold as Ice' encompassed parents' and carers' descriptions of their relationship with National Disability Insurance Scheme staff. These challenges were further impacted by the limited choice and availability of health service providers in rural areas.

Conclusion: Participants felt that the National Disability Insurance Scheme had created additional stress and confusion in their lives and at times had hindered the achievement of the goals of their family member with a disability. The voices of parents and carers is a critical one, and it is essential that rural parents' and carers' needs are considered and supported in future planning of the National Disability Insurance Scheme.