Neurological disability, EDS, ME/CFS, and specialist access barriers (Family or carer experience) | External submission

Submission 826

Senate Community Affairs Legislation Committee Inquiry

National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Thank you for the opportunity to provide feedback on The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am writing to you as a person who has lived with invisible physical and neurological disabilities for more than 25 years. I am also a carer for family members who live with severe invisible disabilities, and an Occupational Therapist who has a special interest

in  invisible  disabilities, including neurological, physical and neurodevelopmental

conditions.

I am concerned that the proposed changes in the legislation introduce a significantly stricter permanence test requiring participants to undertake “all appropriate treatment” before impairments may be considered permanent.

The proposed definition states that treatment may still be considered “appropriate” regardless of:

financial barriers;
geographical location; or
a participant’s capacity to access and participate in treatment. This position is extremely problematic and potentially discriminatory.

Many disabled people cannot realistically access recommended treatment due to:

reduced financial resources;
workforce shortages;
lack of access to transport;
healthcare systems that are not accessible;
communication barriers;
lack of culturally safe services;
not being able to tolerate treatment environments due to sensory sensitivities;
history of trauma; and
lack of available specialists Furthermore, a significant barrier to providing documentation is that the majority of doctors and practitioners do not keep records in as much detail as the NDIA requires. I have a family member who has lived with a severe neurological disability for 40+ years and has been knocked back twice for NDIS access for this condition, due to her treating doctors not documenting their evidence in sufficient detail for NDIA. One of the specialists that we consulted provided a 2 page letter for my family member to submit to NDIA that had gaps in the information required (despite us requesting these details) – when we requested further documentation, this specialist told us that he will no longer write reports for NDIS (after my family member spent a large amount of

Submission 826

money on appointments with him and tried new experimental treatments that he recommended, which could not be continued due to side effects), I know of many doctors and specialists who hold this stance. People like my family member have undertaken all available treatments and are still not accepted by NDIS because of this barrier. My family member lives on the Disability Support Pension and does not have the financial capacity to see more new specialists to gain more evidence, and it is not reasonable that they should have to do so. Previous doctors are deceased or can no longer be contacted, or will not write new reports because this person is no longer their patient. Doctors being unwilling or unable to provide the documentation requested by NDIA is a significant barrier for many people to gain access.

Furthermore, NDIA will only accept disability evidence from certain types of specialists for some disabilities. I support a participant with Ehlers Danlos Syndrome (EDS) who saw a cardiologist because that was the specialist available in their area who had knowledge of EDS, but their evidence was rejected by NDIA because they are not a Rheumatologist. I support many participants living with the neurological condition Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome (ME/CFS) who are often seen by General Practitioners or General Physicians, yet this evidence may not be accepted by NDIA because it does not come from a Rheumatologist or Neurologist. This does not take into account that there are a very limited number of specialists who have knowledge of, or interest, in these conditions. Many of these specialists have very long waiting lists or have closed their books due to high demand, and participants may not be able to travel interstate to see specialists.

I am concerned that capacity building interventions being included as a form of ‘treatment’ will result in fewer people being able to access NDIS support and more participants being removed from the scheme. Many of the people with ME/CFS that I work with have been told by NDIA that they should be building capacity so that they will require less supports in the future (despite NDIA staff not having the medical qualifications required to give this advice). These people have a very limited ability to engage in capacity building interventions and are at risk of further deterioration in their functional capacity if they do so, due to post-exertional neuroimmune exhaustion. These participants are likely to require a high level of support for the rest of their lives due to their neurological disability, and yet their core support funding is repeatedly cut by NDIA without warning (because of the assumption that they are ‘building capacity’), which then takes a large amount of time, funding (for reports/evidence) and energy to be reinstated. These participants have already provided medical and allied health evidence - why should they have to do this over and over again?

I am concerned that the proposed increase in automated decision-making within the legislation could impact the ability to identify and accurately respond to individual needs, resulting in participants receiving supports that do not appropriately reflect their circumstances, functional capacity, or lived experience.

I am concerned that the proposed amendment to allow plans to be suspended when the agency “cannot contact” a participant will cause abrupt, adverse outcomes in the

Submission 826

lives of people living with disability. Participants who experience significant fatigue, cognitive dysfunction and sensory sensitivities (to sound/light), that substantially limit their ability to read emails on a phone/laptop or take phone calls, will be unfairly disadvantaged by this proposed amendment. When my family member submitted a request to have their neurological disability recognised by NDIS last year, they missed both a phone call from a planner and an email from NDIS due to an extended period of deterioration in their capacity – by the time they realised that they had missed these communications, we had missed the timeframe given to go to the Administrative Review Tribunal to appeal the decision – which means that we now have to gather new evidence and re-apply. I am also aware of participants who have had cuts to their plans without ever being contacted at all. Participants depend on these supports to live safely and independently – there is a significant risk of harm, crisis, accidental injury, increased presentation to hospitals, lack of access to adequate nutrition and hydration, and deterioration in mental health, if participants abruptly lose these essential supports.

I am very concerned about the impact of the proposed changes. My family member is

dependent on NDIS supports  to have access  to  nutrition,  to  live  safely and

independently in their home, to attend essential medical appointments and access the community, and to maintain relationships with family and friends. If my family member were to lose access to NDIS supports, it is likely that I would have to further reduce my (already part time) working hours or cease working, to care for them.

I am very concerned that the proposed changes will reduce access to allied health supports and jeopardise the viability of small providers and sole traders, who make up a significant proportion of the allied health workforce. I am concerned that the proposed changes will lead to workforce instability, unemployment, and increased difficulty accessing essential supports in rural and regional areas. This will result in support needs being transferred onto unpaid carers and mainstream systems, who are not equipped or able to handle the increased demand. The removal of sole traders from the workforce, many of whom are highly experienced providers with niche areas of interest, will reduce participant choice and control and may lead to greater adverse outcomes for participants.

RECOMMENDATIONS

I acknowledge the need for a sustainable NDIS. However, I am very concerned that the proposed measures seek to achieve sustainability through measures that reduce access, weaken safeguards, increase hardship, and transfer costs onto disabled people, families, and other systems.

The proposed Bill fundamentally reshapes:

eligibility;
permanence;

Submission 826

functional capacity;
reassessment rights;
funding mechanisms;
decision-making powers; and
participant safeguards. Many of these changes contradict the United Nations Convention on the Rights of Persons with Disabilities.

I urge the Committee to ensure that reforms:

strengthen the evidentiary foundations of decision-making;
preserve a whole-of-person understanding of disability;
protect the role of allied health evidence;
maintain procedural fairness and safeguarding protections; and
avoid repeating failures that have already contributed to participant harm, adverse outcomes, and increased risk of exploitation.

I urge the Senate Committee to recommend:

Delaying implementation until meaningful consultation and impact assessment has been undertaken.
Removing or substantially reducing Ministerial powers to impose broad funding cuts.

• Keeping environmental and personal factors as part of functional capacity

assessments.

Protecting the right to refuse treatment without losing NDIS access.
Strengthening safeguards with regard to plan suspension and participant contact. • Prohibiting completely, and safeguarding partially, automated eligibility and

planning decisions.

Protecting community participation and capacity building supports.
Requiring Category A Rule status for key definitions and funding powers.
Conducting comprehensive impact assessments with regard to human rights, gender, First Nations, and socioeconomic considerations.
Ensuring foundational supports exist and are fully funded before restricting access to the NDIS.

Thank you again for the opportunity to provide feedback on The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

Kind regards,