National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2686
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
I am an NDIS participant living with Multiple Sclerosis (MS) as my primary disability, along with other health conditions that further impact my disability and daily functioning and independence.
I am writing to express my serious concerns about the proposed NDIS reforms and the significant impact they may have on people living with lifelong, degenerative disabilities whose symptoms and support needs can vary significantly and worsen unpredictably over time.
My greatest concern is the proposed reduction in funding for Assistance with Social, Economic and Community Participation. Based on the information available, my support could be reduced by approximately 50%, leaving me with only around four hours of support per week in this category.
My current funding is already limited and does not fully meet my needs. I cannot drive and no one in my household drives. I am unable to use public transport due to my disability. Community access support enables me to attend medical and specialist appointments, NDIS-funded therapies, shopping, social activities and other essential community activities.
Without adequate support, I will effectively become housebound. This would force me to choose between attending medical appointments, accessing therapies, completing essential errands and maintaining social connections because there would simply not be enough support hours available. The resulting isolation would have significant consequences for both my physical disability and mental health.
For people living with MS, maintaining mobility, activity, therapy participation and social engagement is critical. If I become isolated at home due to reduced support, I am likely to experience a more rapid decline in my disability and functioning. This would not only reduce my quality of life but could ultimately increase my future support needs and costs to the NDIS or put me in the hospital system. A reduction of this amount would leave me largely confined to my home and unable to participate meaningfully in my community, contrary to the objectives of the NDIS.
The proposed changes would also place additional pressure on my informal supports. My primary carer already manages her own health issues and is a single mother with significant responsibilities. The support I receive through the NDIS helps prevent carer burnout and enables her to maintain her own health and wellbeing. Reducing my supports would simply shift responsibilities onto family members who are not in a position to provide additional care.
I am deeply concerned about proposals that would provide the Minister with broader powers to make significant changes affecting participants. Decisions that impact the lives of people with disability should be transparent, subject to consultation and accompanied by appropriate safeguards. Participants need certainty that their supports cannot be substantially altered without proper oversight and accountability.
I am also concerned about any move towards standardised plans or funding amounts. MS is a highly individual condition. Symptoms vary significantly between individuals and from day to day. Standardised funding models risk overlooking the complexity of individual circumstances and may leave participants without the supports they genuinely require.
The proposed reduction in flexibility within Core supports is another major concern. One of the strengths of the NDIS has been the ability to use funding flexibly in response to changing needs. MS is unpredictable and my support requirements can vary considerably from week to week. Restricting flexibility by tightly prescribing supports within plans does not reflect the reality of living with a progressive neurological condition where needs can change rapidly and unexpectedly.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2686
I am also concerned that it may become more difficult to obtain plan reviews or funding increases as my disability progresses. MS is a lifelong degenerative neurological condition with no cure. As my condition worsens, my support needs are likely to increase. The NDIS must remain responsive to these changes and allow participants to access additional support without excessive delays, evidence requirements or administrative barriers.
The proposal to prevent unused funding from rolling over between plan periods is particularly concerning. My support needs vary significantly throughout the year. Some periods require higher levels of support while others require less in one area and more in another due to illness etc. The ability to manage funding flexibly across the life of a plan has been essential in responding to these changing needs. Removing this flexibility would disadvantage participants whose disabilities do not follow predictable patterns.
I am also concerned about potential reductions to therapy funding, particularly physiotherapy. Physiotherapy is not optional for people living with MS. It helps maintain mobility, balance, strength, function and independence. Reducing access to physiotherapy and other therapies may lead to avoidable deterioration and increased long-term support needs.
The proposed reforms appear to reduce participant choice and control, which were intended to be fundamental principles of the NDIS. Participants should retain the ability to choose the supports and workers that best meet their individual needs. Disability support is not one-size-fits-all, and participants are often best placed to determine what works for them.
I am concerned that many assessors and decision-makers may not have the specialised knowledge required to properly understand complex neurological conditions such as MS. Degenerative conditions cannot always be accurately assessed through standardised assessment tools. Assessors who lack experience with these conditions may underestimate support needs and fail to understand the real-world impact of symptoms such as fatigue, weakness, pain, mobility impairment, cognitive difficulties and changes in functioning over time.
I am also concerned that the proposed framework remains too broad and lacks sufficient detail about how many of these changes will operate in practice. Participants are being asked to trust a system without fully understanding how future decisions will be made or what protections will exist.
Finally, I remain concerned about ongoing delays in accessing supports, obtaining reviews and making necessary plan changes. People with disability should not have to wait extended periods to access supports that directly affect their health, safety and independence.
I respectfully ask the Committee and the Government to carefully consider the lived experience of people with degenerative disabilities such as Multiple Sclerosis, where symptoms and support needs can vary significantly over time while overall functioning may progressively decline. Any reforms should preserve flexibility, protect participant choice and control, ensure adequate community access and recognise that support needs change over time.
The NDIS should continue to enable people with disability to live independently, access essential services and participate fully in their communities rather than creating additional barriers that increase isolation and disadvantage.
Thank you for considering my submission.