Objective: To evaluate the demographic characteristics, goals and funding of participants with Parkinson’s disease (PD) in the Australian National Disability Insurance Scheme (NDIS).

Background: The NDIS funds supports to increase independence and social and economic participation of people with disability. Younger people are primarily funded, for whom employment and health and wellbeing goals are important. Little is known about NDIS participants with PD.

Method: Individuals with PD with an active plan at June 2024 were identified from the NDIS database. PD was classified as a primary or non-primary cause of disability. Demographic characteristics included age, sex, cultural and linguistically diverse status, First Nations status, and location. Functional level was reported as low, medium or high. Goals were reported within eight NDIS-defined domains. Total payments for financial year 2023 – 2024 were reported. Descriptive analyses reported participants’ demographic and clinical profile. Multivariate logistic regression models were used to estimate associations between participant characteristics and employment and health and wellbeing goals.

Results: Of 4169 participants with PD, 92% (n = 3850) had PD as their primary disability. Of this group, over 85% were aged ≥ 55 years, and 43% were ≥ 65 years. Most were male (59%) and 69% lived in major cities. Only 17% were from culturally and linguistically diverse groups and 2% identified as First Nations. Functional level was low in 52% and medium in 40%. Participants reported a median of three goals (range 0-7); the most common were daily life (78%), social and community (72%) and health and wellbeing (65%); with 17% reporting employment goals. Individuals aged <45 years or 45–54 years were 8.9 (95% CI 5.2, 15.0) or 5.6 times (95% CI 4.2, 7.3) respectively more likely to have an employment goal compared to those ≥ 65 years. Participants with medium and high functional levels also had a higher likelihood of an employment goal compared to those with low function. Age was not associated with health and wellbeing goals. The mean total support payment per participant was $106,856.

Conclusion: Understanding the characteristics of people with PD in the NDIS allows focussed service delivery planning. The profile of participants with employment and health goals provides useful insights to service providers and advocacy organisations.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/characteristics-of-participants-of-the-australian-national-disability-insurance-scheme-with-parkinsons-disease/