6 in 10 people with MS say the NDIS doesn’t understand their condition

A new MS Australia survey of 939 people found 61% believe the NDIS does not understand multiple sclerosis. The result is plan decisions that cut therapy, mental health support and equipment funding, often without consultation.

The survey ran for six weeks from 12 February to 29 March 2026 and reached people in every state and territory, from 531 different postcodes. Just over half of respondents (51%) live in regional, rural or remote Australia. The report was released on 22 May, weeks after the Government announced new NDIS reforms in the 2026-27 Budget.

What participants are losing

Among respondents who had their plan reviewed recently, 42% saw significant changes. The top supports are cut or altered:

• physiotherapy: 47%
• equipment: 41%
• exercise physiology: 36%
• support coordination: 34%
• occupational therapy: 31%
• psychology and mental health: 27%
• personal care: 27%
• dietetics and nutrition: 14%

Respondents also lost help with cleaning, meal preparation, transport, respite, and home modifications. One person told MS Australia their daily activities funding was cut by $6,000 a year. Another saw their plan cut by two-thirds when they asked for more support, not less.

30% of people had to ask for the review themselves because their needs had changed. Only 6% had a review initiated by the NDIS.

A four-time World Champion cut to 12 hours a year

Janine Watson lives with MS. She is also a Paralympic Taekwondo athlete and four-time World Champion. After asking for more capacity-building funding to maintain her independence, her physiotherapy support was cut from 2 hours a week to 12 hours a year.

“My new NDIS plan feels generic, as if it was copied from someone else rather than made for me,” Ms Watson 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. Now, I have an NDIS plan that doesn’t suit my needs and leaves me worse off.”

Another respondent told the survey: “Physio was cut from 40 hours per year to 20 hours per year. This is the one service that has had the biggest impact on my health and wellbeing. I was still able to walk short distances at home with my 4WW, but now can hardly stand to transfer from my wheelchair.”

“When will you be cured?”

The report records repeated examples of assessors getting MS wrong. Respondents were told depression is not a symptom of MS, that there is no link between MS and continence issues, and in one case that “MS is not real and is made up.”

One respondent recounted being asked by an NDIS staff member: “When will you be cured?”

Psychology was often removed on the basis that mental health is a “mainstream” service. One person said: “Psychology was cut because this could be provided through a health care plan, however I cannot afford the gap of $100 for each session.”

The over-65 problem

People diagnosed with MS before turning 65, or before the NDIS existed, are locked out of the scheme. Several respondents called this age discrimination.

One wrote: “I was over 65 years old when the NDIS started and have incurred considerable expense ($75,000) on disability equipment which I should have been able to claim and would have been able to claim if I had been slightly younger.”

MS Australia is calling for the age cut-off to be addressed as part of reform.

Fear of asking for help

A recurring theme in the open responses was that participants are afraid to request a review in case they lose what they have.

One respondent said: “No assistive technology. Terrified of asking for a review and losing any of my funding.” Another wrote: “Fear is holding me back.”

A third put it more plainly: “The last three years on the NDIS sped up my social isolation and disability at a faster rate than any relapse.”

“Support should not depend on who you speak to”

MS Australia CEO Rohan Greenland said the findings show a gap in how MS is recognised within the NDIS.

“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.”

Mr Greenland said the NDIS is still essential, but is delivering inconsistent outcomes.

“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. What we are seeing is inconsistency. Support should not depend on who you speak to, it should be based on what people need.”

What MS Australia wants the Government to do

MS Australia is asking the Government for four changes:

• MS-specific training for NDIS staff and assessors
• better recognition of fatigue and other invisible symptoms
• more flexible, individualised supports that reflect the progressive nature of MS
• faster, clearer processes for accessing and reviewing supports

The full report also calls for a participant-focused pricing model, investment in the disability workforce, and better housing and living supports.

Why the timing matters

The 2026-27 Budget shifts NDIS assessments toward a person’s functional capacity rather than their diagnosis, alongside measures to manage scheme costs.

MS Australia is concerned that this could widen the assessment gap for conditions like MS that fluctuate over time.

“Reform must strengthen confidence that people are being assessed accurately and fairly, and must not make it harder for people with complex and progressive conditions like MS to access the support they need,” Mr Greenland said.

Read the full MS community NDIS survey report: https://www.msaustralia.org.au/wp-content/uploads/ms-community-ndis-survey-report_final.pdf