A
national survey by MS Australia has raised concerns about how people living with multiple sclerosis are being assessed and supported under the National Disability Insurance Scheme, as the federal government prepares to introduce major reforms to the system.
The survey of 939 people found that 61 per cent of respondents believe the NDIS does not properly understand multiple sclerosis, with many reporting reduced access to therapies and support services following plan reviews.
The findings come as the Australian Government moves ahead with changes outlined in the 2026-27 Federal Budget, including new assessment models focused more heavily on functional capacity rather than diagnosis, alongside efforts to contain rising plan costs.
MS Australia chief executive Rohan Greenland said the survey reflects growing frustration within the MS community about inconsistent decision-making and a lack of understanding of the condition’s fluctuating and progressive nature.
“People are telling us that the realities of living with MS are not properly recognised, and decisions are made that reduce access to the therapies and supports they rely on to stay independent and manage their condition,” he said.
“MS is often invisible and, for many people, progressive and fluctuating. When that is not properly understood or reflected in decision-making, people miss out on the support they need.”
More than 40 per cent of respondents said their support arrangements changed after an NDIS plan review. Physiotherapy, exercise physiology and occupational therapy were among the services most commonly reduced.
Some participants reported losing mental health supports or experiencing cuts to allied health funding despite worsening symptoms. Others described confusion and inconsistency between assessors and review processes.
One respondent said the loss of physiotherapy funding had reversed hard-won progress.
“I was doing really well with my physiotherapy, progressing and building up strength and confidence, and then there was no funding for that anymore,” the respondent said.
“Since then, my strength has declined, and I feel a lot worse off than before. I feel the rug has been pulled from under me.”
Another participant said their condition was worsening while the level of care available to them had declined.
Among those speaking publicly about their experience is Janine Watson, a Paralympic Taekwondo athlete and four-time world champion living with MS. Ms Watson said her latest NDIS plan reduced her physiotherapy support from two hours a week to 12 hours a year, despite her request for additional capacity-building support to maintain independence.
“My new NDIS plan feels generic, as if it was copied from someone else rather than made for me,” she said.
“I’m frustrated because I put a lot of time and effort into preparing thorough evidence and reports for my plan review, yet it seems like none of it was considered.”
The National Disability Insurance Agency has previously said reforms are intended to improve fairness, consistency and long-term sustainability within the Scheme. The government has argued that changes to assessment processes will help ensure support is based on individual needs and day-to-day functioning.
Disability advocates, however, have warned that people with complex neurological conditions may be disadvantaged if assessors do not fully understand the less visible aspects of illnesses such as MS, including fatigue, cognitive impairment and unpredictable progression.
Mr Greenland said the NDIS remains an essential support system for many Australians living with disability, but argued greater consistency is needed.
“It’s not perfect, but it is a critical system that must consistently deliver the support people need to live independently and manage their condition,” he said.
“What we are seeing is inconsistency. Support should not depend on who you speak to, it should be based on what people need.”
MS Australia is calling for improved MS-specific training for NDIS staff and assessors, greater recognition of invisible symptoms, more flexible support arrangements and faster review processes.
The organisation says reforms should strengthen confidence in the system rather than make access to support more difficult for people with progressive conditions.
The full MS community NDIS survey report is available via MS Australia.
Support independent community journalism. Support The Indian Sun.
Follow The Indian Sun on X | Instagram | Facebook
Support Independent Community Journalism
Dear Reader,The Indian Sun exists for one reason: to tell stories that might otherwise go unheard.
We report on local councils, state politics, small businesses and cultural festivals. We focus on the Indian diaspora and the wider multicultural community with care, balance and accountability. We publish in print and online, send regular newsletters and produce video content. We also run media training programs to help community organisations share their own stories.
We operate independently.
Community journalism does not have the backing of large media corporations. Advertising revenue fluctuates. Platform algorithms change. Costs continue to rise. Yet the need for credible, grounded reporting in a multicultural Australia has never been greater.
When you support The Indian Sun, you support:
• Independent reporting on issues affecting migrant communities
• Coverage of local and state decisions that shape daily life
• A platform for small businesses and community groups
• Media training that builds skills within the community
• Journalism accountable to readers
We cannot cover everything, but we work to cover what matters.
If you value thoughtful reporting that reflects Australia’s diversity, we invite you to contribute. Every donation helps us maintain the quality and consistency of our work.
Please consider making a contribution today.
Thank you for your support.
The Indian Sun Team
