The use and experience of the national disability insurance scheme for Australians with skeletal dysplasia: a mixed-methods study

Background: Skeletal dysplasias are rare disorders affecting bone growth and development that impact functional performance. In Australia, the National Disability Insurance Scheme (NDIS) was rolled out in 2016 to support individuals with disabilities access reasonable and necessary supports to promote independence and quality of life. Anecdotally, Australians with skeletal dysplasias report challenges with accessing and using the NDIS but this has not previously been reported in the literature. Therefore, this study aims to explore the use and experience of NDIS for Australians with skeletal dysplasias.

Methods: This is a cross-sectional, mixed-methods study. Eligible participants included adults and children (represented by their parents) with skeletal dysplasias, irrespective of NDIS access. Participants completed an online survey, the Functional Independence Measure (FIM), or WeeFIM for paediatric participants, and semi-structured interviews exploring their NDIS access, use, and experience. Survey responses and FIM/WeeFIM results were analysed using descriptive statistics. Grounded theory approach and inductive thematic analysis was performed on qualitative data.

Results: Of the 14 participants (10 adults, 4 parents), nine (64%) had NDIS access. Six (66.7%) participants with access reported to be satisfied with their NDIS experience, two (22.2%) extremely satisfied, and one (11.1%) neutral. FIM (median 115.5/126, range 104-125) and WeeFIM (median 95.5/126, range 61-124) demonstrated all participants utilised assistance and/or equipment in daily activities. Three key themes identified through interviews: (1) Consistent, process-driven barriers, (2) Inconsistent, person-driven facilitators, and (3) Impact of NDIS.

Conclusion: Despite all participants demonstrating a need for assistance to achieve functional independence, experience and success in accessing the NDIS were varied. Both positive and negative impacts were reported when accessing, or attempting to access the NDIS. To promote more equal and equitable NDIS access for individuals with skeletal dysplasias, NDIS and condition-specific knowledge is recommended for all stakeholders. Finally, further evaluation is needed to ensure future NDIS eligibility changes provide access to those who are potentially eligible but currently rejected.