Charcot Marie Tooth Disease participant's concerns about functional capacity assessment (Participant experience)

Submission 666

Submission to the Senate Community Affairs

Legislation Committee

Inquiry into the National Disability Insurance Scheme

Amendment (Securing the NDIS for Future Generations) Bill 2026

Date: 25/5/26

1. Introduction Thank you for the opportunity to provide a submission to the Senate Community Affairs

Legislation Committee regarding the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026.

I am writing from two perspectives.

First, I am an NDIS participant. I am 51 years old and have Charcot Marie Tooth Disease Type 1A, also known as CMT1A. CMT is a degenerative neuropathy. I was born with it, and I have lived with it my whole life. I am currently stable, but that stability is only possible because I have the right supports in place.

Second, I am an advocate who supports children and families navigating the NDIS, particularly children with Autism Spectrum Disorder Level 2 and Level 3, developmental delay, functional impairment, and complex daily support needs.

I support the goal of making the NDIS sustainable. The NDIS must be protected for people with permanent and significant disability now and into the future. However, I am concerned that some of the proposed changes could unintentionally harm participants if they are applied too narrowly, too quickly, or without proper safeguards.

My main concern is that the Scheme must not move away from individualised assessment, choice and control, continuity of care, and a proper understanding of functional capacity.

2. Summary of my concerns I ask the Committee to consider amendments or safeguards to ensure that:

3. Functional capacity is assessed properly and individually, not through short checklists, diagnosis-based assumptions, or broad funding categories.

4. People with degenerative conditions are not disadvantaged because they appear “stable” while they are receiving the supports that are keeping them stable.

Submission 666

3. Reassessment processes protect continuity of care and do not remove supports without clear evidence and proper review.

4. Choice and control remain central to the NDIS, including the ability to use trusted and appropriately skilled providers.

5. Therapy and daily living supports are understood as preventative and capacity- maintaining supports, not optional extras.

6. Children with significant disability are not refused support because their needs are incorrectly characterised as ordinary parental responsibility.

7. The NDIS does not assume that mainstream, foundational, family or community supports are available, suitable, or skilled enough unless that has been properly tested.

8. Functional capacity must be assessed properly The proposed Bill appears to place greater emphasis on functional capacity, substantially reduced functional capacity, disability-related supports, and eligibility. I understand the need for clearer rules. However, I am concerned about how these rules will be applied in practice.

CMT1A affects people differently. Some people with the same diagnosis may use wheelchairs or walking frames from a young age. Others may appear more mobile but still have serious impairment in daily life. This means people with CMT cannot be placed into one disability bucket with one assumed level of funding.

My disability affects both my fine and gross motor skills. On paper I may appear to be functioning well, but the details of my daily life tell a different story.

For example:

• I cannot open a bottle of milk without help.
• I cannot open a new jar or bottle of food.
• I cannot change earrings or necklaces independently.
• I cannot safely walk up or down stairs without help.
• I mostly cannot walk safely on uneven surfaces.
• I become exhausted after doing family washing.
• I cannot reliably tie my shoelaces so they stay tied.
• My typing is becoming slower and has more mistakes. These are not small inconveniences. They affect communication, work, parenting, independence, safety, daily living and economic participation. Assistive technology does not solve many of these tasks, because the issue is not just access to equipment. It is loss of strength, fine motor control, fatigue and safety.

I am concerned that an internal or brief functional assessment may not capture these needs. A few general questions will not identify the daily impact of a degenerative neuropathy. A proper functional capacity assessment needs to ask detailed questions about real daily tasks, fatigue, safety, pain, endurance, fine motor skills, gross motor skills, and the supports that are currently preventing decline.

Submission 666

4. Stability should not be mistaken for lack of need I am stable at the moment because I have support. Stability should not be used as a reason to remove the supports that are creating that stability.

Before I accessed the NDIS at age 47, I paid privately for therapy from my teenage years. That included podiatry, physiotherapy, psychology and group exercise classes with a physiotherapist. I have spent thousands of dollars over my lifetime trying to stay as strong and independent as possible.

The NDIS currently funds podiatry, physiotherapy, physiotherapist-led group exercise, and a support worker to assist with in-home supports. These supports help me maintain my ability to function, parent, work, participate and avoid regression.

Without these supports, I would present very differently. I would not be able to manage my home. I would struggle to prepare food. My family may need to rely more on takeaway food, which is expensive and unhealthy. I would not be able to work in the same way because my hands and arms would be exhausted from daily tasks before I even sat down at my computer.

Without my current supports, I would likely be resting again by 9am after getting the children to school. With my supports in place, I can usually keep going until the evening, when I often collapse on the lounge before going to bed.

The NDIS should recognise that maintaining function is a valid and important outcome, especially for degenerative disability. If supports are removed until a person deteriorates, the Scheme may end up paying more later for crisis supports, home modifications, mobility equipment or more intensive care.

5. Choice and control matter for safety and continuity Choice and control are not just preferences. For many participants, they are essential to receiving safe, effective and appropriate support.

If I could not choose my own providers, I may need to travel long distances. Driving through the city is physically exhausting for me. Long travel to therapy can defeat the purpose of the therapy because I arrive already fatigued.

Over the past four years I have attended two physiotherapy clinics. The clinic I had attended for around eight years became too far away, and staff turnover meant I was repeatedly having to explain CMT to new therapists. I chose to move to a specialist physiotherapist close to home. I now see the owner of the business and have continuity with someone who understands my condition.

That continuity matters. It means I do not need to retrain a provider every few months. It means my therapy is safer and more targeted. It means I can maintain my function and reduce unnecessary fatigue.

Submission 666

I ask the Committee to ensure that any changes to planning, funding flexibility, provider arrangements or pricing do not reduce participants’ practical ability to choose providers who understand their disability and their life.

6. Daily living supports help me work, parent and contribute My support worker assists with in-home tasks that use fine and gross motor skills that are reducing over time. These supports are not about convenience. They allow me to preserve my energy and physical capacity for parenting, working and participating in the community.

I run my own business. My work requires reading, sitting, typing and communication. Without support, my hands and arms would be too exhausted from daily living tasks to continue working at my current level. I have had chronic fatigue syndrome in the past. With the right supports in place, I can manage my job and continue paying tax.

This is an important point for NDIS sustainability. Cutting supports that keep people working may create greater costs elsewhere. If I could not work, there would be pressure on the income support system, my family, and potentially the health system.

My NDIS supports assist with:

• Communication: I can continue to type and work.

• Independence: I do not have to rely on my children to dress me or do ordinary personal tasks.

• Daily living: I am not exhausted by 9am after basic household tasks.

• Economic participation: I can continue working and contributing.

• Social connection: I can sometimes see friends and participate socially.

• Family wellbeing: I can continue parenting my children rather than making them my carers.

My children are teenagers. They attend school, work, study, eat and sleep. They should not be required to take on care responsibilities beyond what is reasonable for teenagers. My role is to parent them. They are not here to look after me and themselves.

7. Reassessments must be fair, careful and evidence-based I am concerned about changes to reassessment rules if they lead to supports being reduced without a proper understanding of disability.

For people with degenerative conditions, reassessment must consider both current function and the supports that are preventing decline. It must also consider likely deterioration if supports are removed.

I am worried that an assessor or delegate may not understand CMT1A. I have seen examples in my advocacy work where internal functional questions appeared too brief and not suited to the person’s disability. A generic process cannot properly assess a lifelong degenerative neuropathy if it is designed around a completely different impairment.

Submission 666

If the Bill allows greater reliance on internal assessments or new reassessment processes, safeguards are needed. These should include:

• the right to provide existing treating therapist reports;
• proper consideration of degenerative conditions;
• recognition that maintenance of function is an outcome;
• clear reasons before supports are reduced;
• review rights that are accessible and timely;
• no sudden removal of essential supports while a review is underway.

8. Disability-related supports must include maintenance and prevention

I ask the Committee to ensure that the definition and application of “disability-related supports” includes supports that maintain function, prevent regression and reduce future costs.

For me, physiotherapy, podiatry, group exercise and in-home supports are all disability related. They help me remain mobile, avoid further decline, use my hands as safely as possible, keep working, parent my children and stay connected to the community.

If I lose access to therapy or core supports, I may regress. I am genuinely worried that without the supports I have now, I could lose strength, need a wheelchair, or require significant changes to my home so that I can access only one level and reach what I need. That would be devastating for me and may cost the NDIS more in the long term.

9. Access to other service systems must be realistic I am concerned that, in practice, participants may be told to seek support from other systems that do not actually provide what is needed.

For example, health services may provide medical care, but they do not usually provide ongoing disability-related therapy to maintain function over years. Mainstream services may not provide in-home support to preserve a participant’s capacity to work, parent and live independently. Community services may not have workers trained to understand complex disability, autism, communication needs, behaviour support, fatigue, fine motor impairment or safety risks.

Before the NDIS refuses a support on the basis that another system should provide it, there should be a practical test:

• Is the other service actually available?
• Is it available in the participant’s area?
• Is it affordable?
• Is it disability-informed?
• Is it suitable for the person’s functional needs?

Submission 666

• Will it provide continuity?
• Will it provide the same type, intensity and purpose of support? If the answer is no, the participant should not be left with a gap.

10. Impact on children with ASD Level 2 and Level 3 I also write as an advocate for children with Autism Spectrum Disorder Level 2 and Level 3.

I understand there is concern about the growth of the Scheme and the need to clarify what the NDIS funds. However, children with significant disability often have needs that are far beyond ordinary parental responsibility.

The proposed changes need to be careful not to treat necessary disability supports as simply reducing parental burden.

Families I support are not asking the NDIS to replace parenting. They are asking for disability related supports so their children can communicate, regulate, participate, build skills, stay safe, access therapy, and be included in family and community life.

For children with significant autism, support needs may include:

• communication support;

• therapy to build functional skills;

• support to participate outside the home;

• help with transitions, routines and regulation;

• support to reduce isolation;

• support to build daily living skills;

• skilled supervision where safety risks are much higher than for a typical child of the same age;

• support for families to implement therapy strategies safely and consistently. If the Bill narrows access or support categories too much, children may miss the early and ongoing supports that prevent later crisis. In my work, I regularly see that when reports do not properly explain functional impact, developmental gaps and the child’s support needs compared with same-aged peers, families struggle to access appropriate funding.

The NDIS must continue to assess the child’s actual functional capacity, not just their diagnosis, and not just whether they have parents who love and care for them.

11. My family experience with autism and lack of support This is also personal for me. My brother is 46 years old and has Autism Spectrum Disorder Level 2 and a mild intellectual disability. He only received a small amount of occupational therapy when he was young. He was not properly assessed until his 30s.

Submission 666

For many years, my family did not understand why he was different. My mother blamed herself. She was raising five children, including one child with significant disability and three children with CMT1A. The pressure on her was enormous.

My brother now has access to psychology, speech therapy, community supports and a support worker. Without these supports, he would be extremely isolated. The best way I can describe it is this: during COVID, people experienced what it was like to be stuck at home and disconnected. Without NDIS supports, that would be his normal life.

This is why I am concerned about children losing access to therapy, community participation or developmental supports. The cost of no support is not just financial. It is lifelong. It affects the person with disability, their parents, siblings and future independence.

12. Recommendations I respectfully ask the Committee to consider the following recommendations.

Recommendation 1: Protect individualised assessment

The Bill should make clear that funding and eligibility decisions must be based on the person’s individual functional capacity, circumstances, environment, disability impact and support needs, not diagnosis-based funding buckets or broad assumptions.

Recommendation 2: Recognise maintenance as a valid NDIS outcome

The legislation and rules should clearly recognise that maintaining function, preventing deterioration and avoiding regression are reasonable and necessary outcomes, particularly for degenerative, lifelong or fluctuating disabilities.

Recommendation 3: Safeguard continuity of care

Participants should not lose essential therapy, daily living supports or trusted providers through abrupt reassessment or funding changes. Any transition should be gradual, evidence-based and reviewable.

Recommendation 4: Keep choice and control meaningful

Participants should continue to have practical choice over providers, especially where specialist knowledge, location, continuity, fatigue, travel tolerance or disability-specific expertise are relevant.

Recommendation 5: Ensure functional capacity assessments are fit for purpose

Functional assessments should be detailed enough to capture daily living, fatigue, safety, fine and gross motor skills, communication, family responsibilities, economic participation and the impact of removing current supports.

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Recommendation 6: Do not assume other service systems are available

Before supports are refused because another system may be responsible, there should be evidence that the other system can actually provide timely, appropriate, affordable and disability-informed support.

Recommendation 7: Protect children with significant disability

The legislation should make clear that children with significant disability can still receive supports where their needs exceed what is ordinarily expected for a child of the same age. Supports should not be refused simply because they also reduce pressure on parents or improve family functioning.

13. Conclusion I support a sustainable NDIS. I want the Scheme to be available for future generations. But sustainability should not be achieved by removing the supports that keep people stable, independent, working, parenting and participating.

For me, the NDIS is not about luxury or convenience. It is about staying upright, staying independent, keeping my hands working as long as possible, continuing to parent my children, continuing to work, and avoiding decline.

For the children and families I support, the NDIS is often the difference between early support and lifelong crisis. It is the difference between a child being understood and a child being left behind.

I ask the Committee to ensure that any amendments to the NDIS Act protect the people the Scheme was created for: people with permanent and significant disability who need individualised, practical and disability-related support to live an ordinary life.

Thank you for considering my submission.