Submission 2248 - Supplementary Submission

Submission 2 to the Senate Community Affairs Committee – NDIS Future Generation Bill 2026

I am an NDIS participant living with Multiple Sclerosis (MS) in Perth, Western Australia.

I am writing to express again my deep concern about a number of proposed changes contained within the NDIS Future Generation Bill 2026. While I understand the need to ensure the NDIS remains sustainable, I am seriously concerned that many of these proposed reforms will disadvantage people with a disability, particularly those living with complex, fluctuating and progressive neurological conditions such as Multiple Sclerosis.

My MS affects my functional capacity in many aspects of daily life. I experience challenges with mobility, balance, vertigo, fatigue, vision, coordination and struggle with accessing the community safely, daily living activities and managing my needs on my own. These functional impacts affect my independence and require ongoing support and intervention to help me maintain my capacity and quality of life.

I am particularly concerned about the proposal to replace diagnosis-based access considerations with new functional capacity assessments. People with neurological conditions often won’t disclose their symptoms or functional impact during appointments or assessments, and sometimes you can’t actually see impairments that have an impact on functioning. An assessment that focuses on what a person can do at a particular moment, without considering fatigue, symptom fluctuation, support needs, assistive technology, environmental modifications and the cumulative impact of disability, may significantly underestimate how disability affects daily life.

This concern has also been raised by MS Australia and other disability organisations. Multiple Sclerosis is often characterised by permanent fluctuating symptoms, invisible disability and changing levels of function. They have a permanent baseline that fluctuates but the permanency of the condition is still very much there. Baselines depend on many factors and can be influenced also by stress, temperature changes, illness, co morbidities and the neural load in which they carry. A snapshot assessment will fail to capture the true impact of the condition on a person’s ability to participate safely and independently in everyday life.

Someone with multiple sclerosis may work full time but can only do so because they have home supports to be able to turn up to work each day. Without those supports they would lose their job.

Someone with Multiple Sclerosis may not work and study and also may not be able to study without their supports in place.

There is also some who don’t or can’t study and work yet need supports to access the community and function on a daily basis to help meet personal goals eg volunteer, manage their own health admin, be part of society and contribute to conversation and connection.

The snapshot assessments will miss so many important individual indicators.

Submission 2248 - Supplementary Submission

I am also concerned about proposals that would only fund supports linked to impairments specifically accepted by the NDIA. Many people with disability live with complex presentations where symptoms overlap, evolve over time and cannot be neatly separated into categories. Restricting supports in this way risks creating artificial divisions that do not reflect the reality of living with disability.

Another concern is the proposal to refuse supports where there is insufficient published research. Many supports are funded because treating professionals observe clear functional benefit for an individual participant. Decisions should continue to consider clinical judgement, individual outcomes and the expertise of treating practitioners who understand the person’s circumstances.

I am also concerned about provisions that would allow support categories to be reduced through broad policy decisions rather than individual assessment. People with progressive neurological conditions require personalised consideration. Funding decisions should continue to be based on individual functional needs rather than broad reductions applied across disability groups.

Many people within the MS community are already experiencing significant distress due to reductions in allied health funding, particularly physiotherapy. Physiotherapy is widely recognised as a key intervention for maintaining mobility, managing symptoms, reducing falls risk, preserving independence and maximising quality of life for people living with MS.

I am aware of cases where physiotherapy funding has been removed and replaced with funding for a Therapy Assistant. However, a Therapy Assistant does not replace a physiotherapist. Therapy Assistants work under the direction and supervision of qualified allied health professionals and cannot independently provide the assessment, clinical reasoning, treatment planning and ongoing review that people with complex neurological conditions require. Decisions that reduce access to appropriately qualified allied health professionals risk undermining participant outcomes and may ultimately increase support needs over time.

I am particularly troubled by the prospect of important assessment tools, eligibility thresholds and operational rules being determined after legislation has already passed. Disability organisations, advocates and legal bodies have raised similar concerns. Participants deserve transparency and certainty. Parliament should know exactly how these reforms will operate before they become law.

My concerns are not mine alone. They reflect concerns raised by MS Australia and numerous national disability organisations in their submissions to this inquiry. These organisations have highlighted the risks of assessment processes that may not adequately recognise fluctuating neurological conditions, the dangers of implementing major reforms before key details have been fully developed and scrutinised, and the importance of ensuring decisions remain grounded in individual functional need rather than administrative efficiency or cost containment.

I also respectfully ask the Committee to consider the human impact of these reforms on people living with disability. Many NDIS participants are already managing complex medical conditions, specialist appointments, therapies, reviews, hospital visits and administrative

Submission 2248 - Supplementary Submission

requirements. This creates significant physical, cognitive and emotional strain. People with disability are often among the most vulnerable members of our community and many experience substantial medical and appointment fatigue simply from trying to access and maintain the supports they need.

I respectfully beg the Committee to recommend that this Bill and its associated reforms be paused until a genuinely trauma-informed approach is embedded throughout every aspect of the proposed changes. Requiring people with disability to repeatedly prove their needs, navigate increasing administrative burdens, face uncertainty about essential supports and continually defend their eligibility can cause significant distress and harm. Any reform of the NDIS should prioritise dignity, safety, trust, transparency and meaningful consultation with people who have lived experience of disability.

The sustainability of the NDIS should never come at the expense of the wellbeing of the very people it was created to protect.

The NDIS was designed to support people based on their functional needs and capacity to participate in everyday life. I believe that principle must remain at the centre of any reform.

I respectfully ask the Committee to recommend that:

• Functional assessments reflect a person’s real-world circumstances, including symptom fluctuation, fatigue, support needs, assistive technology and environmental factors.
• Supports continue to be determined based on individual functional impact rather than narrow impairment categories.
• Clinical evidence and recommendations from treating health professionals remain a valid basis for funding decisions.
• Individualised planning, review rights and procedural fairness are preserved.
• Assessment tools, thresholds and decision-making rules be fully developed, published and independently scrutinised before any legislative changes are implemented.
• The NDIS continues to recognise the needs of people with progressive neurological conditions whose disabilities may not fit neatly within rigid assessment frameworks.
• The Bill be paused until a comprehensive trauma-informed review of the proposed reforms is undertaken, including meaningful consultation with NDIS participants, families, carers, disability advocates, disability organisations and frontline allied health professionals.

Thank you for considering my submission.