Reports on NDIS participants with Sensory Disability and Neurodegenerative Conditions released

See below the Media Release from the NDIS, 1/7/21.

We have released two deep dive reports today about participants with a sensory disability in the NDIS and participants with neurodegenerative conditions in the NDIS.

The report on sensory disability is about NDIS participants with hearing, visual, or other sensory/speech impairments. The report on neurodegenerative conditions is about NDIS participants with the following five conditions: Muscular dystrophy, Huntington’s disease, Motor neurone disease, Multiple sclerosis, and Parkinson’s disease.

Both reports are divided into four sections and cover participant characteristics, participant experience of the NDIS, plan supports and payments for supports, as well as participant goals, outcomes and satisfaction.

The purpose of these reports is to provide detailed information about the experiences of these groups of participants, to help the NDIA, sector, providers and other interested parties understand how to work best with them.

Working with NDIS participants to understand and measure their experiences with the Scheme, as well as the progress they are making with their plan goals, is an important part of our work.

One way we do this is through the NDIS Outcomes Framework; questionnaires that participants and their carers complete to measure progress and provide a picture of how the Scheme is making a difference and where it needs to improve. Progress against the Outcomes Framework is included in this report.

Some key findings: Participants with a neurodegenerative condition in the NDIS

• As at 31 March 2021, there were 449,998 active NDIS participants with an approved plan. Of these 14,389 had a neurodegenerative condition:
  • 2,258 (0.5%) had Muscular dystrophy
  • 945 (0.2%) had Huntington’s disease
  • 789 (0.2%) had Motor neurone disease
  • 8,263 (1.8%) had Multiple sclerosis
  • 2,134 (0.5%) had Parkinson’s disease.
• A higher proportion of people who apply to the NDIS with a neurodegenerative condition, except Parkinson’s disease, meet the access criteria compared to people with other disabilities. The proportion is slightly lower than the Scheme average for Parkinson’s disease.
• Participants with a neurodegenerative condition have significantly higher annual supports and payments in their NDIS plan compared with the Scheme overall. Participants with Motor neurone disease have the highest average annual committed supports, followed by participants with Huntington’s disease.
• Participants set goals as part of their NDIS planning process. We are seeing participants with a neurodegenerative condition most often set goals related to daily life, social and community activities, and health and wellbeing.
• Information on participant, family and carers outcomes is collected through a survey when participants enter the Scheme (baseline) and again at their plan reviews. The survey is showing that outcomes for participants with a neurodegenerative condition have improved across most indicators since they joined the Scheme.
• NDIS participants take a satisfaction survey at each stage of their NDIS experience to rate their level of satisfaction with Agency processes. This shows that the majority of participants with a neurodegenerative condition are satisfied with their experience by rating the Agency’s performance as ‘good’ or ‘very good’.

Explore more NDIS Data

• The NDIA regularly refreshes data about the Scheme on the NDIS Data and Insights website.
• Use our interactive data tool to explore and customise NDIS data to your interests.
• Learn more about how and why we share our data by visiting our Public Data Sharing page on the NDIS Data and Insights website.