National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1168
25 May 2026
I do not wish for my name to be made public due to privacy reasons for my own wellbeing.
Subject; Submission regarding continued access to NDIS supports for people living with Multiple Sclerosis (MS)
To the Committee,
I am writing as a mother and grandmother to express my concerns regarding proposed NDIS changes and the importance of preserving ongoing supports for people living with Multiple Sclerosis (MS).
In March 2020, my daughter and grandson were both diagnosed with Multiple Sclerosis. I am appealing for continued protection of access to the supports they currently receive through the NDIS and for recognition that people with progressive neurological conditions require long-term, flexible support.
Multiple Sclerosis is a chronic, degenerative and unpredictable neurological disease where the immune system attacks the brain and spinal cord. It is lifelong and progressive, and no two people experience it in the same way. Symptoms fluctuate and are often invisible to others. Some people with MS are participants and can only work because of the NDIS supports they receive.
On any given day they may experience:
• Severe fatigue that can be disabling and unable to do daily basics like cooking • Heat and cold sensitivity • Cognitive difficulties and brain fog • Chronic pain that stops them from working or moving • Dizziness and balance issues that cause issues and they cannot go to the shops • Vision problems that cease driving • Mobility limitations eg walking • Changes in strength and physical function • Other symptoms they often do not tell me about because they do not want to worry me
The unpredictability of MS means they never know what they will wake up to each day. A person can appear well one day and struggle significantly the next. The proposed functional capacity assessment will not work because their function changes daily.
The NDIS support they receive has helped them maintain daily functioning, independence and quality of life. Helped them not become a burden to other
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1168
systems or in hospital. Supports are not “extras” or conveniences; they are essential.
Without these supports there is a risk of:
• Increased physical deterioration then relying on other government systems and services • Greater fatigue and pain resulting in isolation • Reduced ability to participate in community life • Reduced independence • Increased burden on families and informal carers • Greater likelihood of crisis intervention and higher future costs
Early and ongoing support for progressive conditions like MS should not only be viewed as a cost. Capacity-building supports, therapies and assistance can help people maintain function for longer, prevent decline and reduce the need for more intensive and costly interventions in the future.
My concern is that changes which place greater emphasis on narrow assessments of functional ability, or assumptions that people who can work, walk or appear independent are less affected by disability, may unintentionally disadvantage people living with fluctuating conditions such as MS.
MS does not follow a straight line. A person can appear capable while still requiring significant supports to maintain that level of functioning. Even people with MS who are on disease modifying treatment still require supports. It does not cure or help with their symptoms.
My family is everything to me. Life has not been easy for us. We have lost our eldest son to cancer, as well as parents, siblings, nieces and nephews. We are not strangers to grief, pain and loss.
Because of this, I do everything I can to support and protect my family and help them live the best life possible.
I respectfully ask the Committee to consider:
- Ensuring that people with progressive neurological conditions such as MS continue to receive long-term and flexible support.
- Recognising the fluctuating and often invisible nature of disability.
- Protecting access to capacity-building and preventative supports that help maintain independence and reduce future costs.
- Ensuring that families are not left carrying increased caring responsibilities due to reduced supports.
Please consider the real impact these decisions have on individuals and families.
Please do the right thing by people living with MS and the families who support them every day.