NDIA Accountability Project

Daughter’s severe Myalgic Encephalomyelitis care needs at risk

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Submission Regarding the 2026 NDIS Bill

My name is I’m 51 years old and live in , NSW. Please find my submission about the 2026 NDIS Bill below - with some general thoughts and also with reference to my experience as the full time carer for my 16yo daughter who is a - current NDIS participant since October 2025. She lives with very severe Myalgic Encephalomyelitis, a complex multi-system neuro-immune disease. It has no cure and no treatments, other than symptom management. She is bed-bound 24/7, requiring full care for all of her basic needs (eating, drinking, toileting, changing position, communication etc). I am assisted by my husband Craig, but mostly after hours as he is working full-time as well, now being the sole income provider for our family.

In short, I am opposed to the proposed Bill and urge it be rejected. It will cause harm to and negatively impact people with disabilities, their families/carers and to those who work as providers. I ask that you vote against accepting this proposed bill and ensure the safety, care and wellbeing of people with disabilities continues to be upheld through the provision of NDS supports.

Firstly, more time should be allowed for people to make submissions on this Bill. Especially people with disabilities and their families, who often have very limited capacities for extra tasks in daily life. There must be accessibility offered in making submissions. There must be appropriate consultation with those who are impacted, and should also include providers. The time allowed was not accessible, nor fair. I have certainly struggled to write this submission, and would have liked more time to ensure I could give the best consideration possible. As it is - this is all I could manage given the extreme limitations to my time, energy and capacity as a full time carer.

Here are a number of my key concerns:

  • The disability minister should not have increased power, should not be able to decide funding levels for disability categories, should not decide to exclude or remove people from accessing or receiving supports, and should not be given the freedom to make any changes they deem needed for implementation at any point. No one person - now or in the future - should have the power to make large-scale decisions that affect whole groups of participants by diagnosis/impairment or support type. Supports must be determined by what is reasonable and necessary for each individual. Funding needs to actually cover the cost of supports needed, and not be capped or have maximum levels imposed by the minister. And changes must be made with proper consultation, fair process, and ensure people with disabilities are not harmed.

  • There also needs to be no changes made to the NDIS and how it operates without following the proper processes of parliament and law. And any changes need the full details to be clear before changes to the law are made - eg. how functional capacity

Assessments and Funding Algorithms

assessments would be made, what the funding algorithms would look like, who will do assessments etc. You cannot approve changes without the details of how changes will then operate.

The NDIA must look at the whole person and their full context, not just one disability, when deciding on supports needed. Many people with disabilities have multiple disabilities or impairments that need to be considered. Everyone has numerous contexts that impact on their individual capacities, and on what they need to live. This includes things like housing, family/friends/informal supports, community situation and so on. My daughter has multiple impairments that together impact her functional capacity and require consideration as to her whole-of-person experience.

Reasonable and necessary should not mean that families/informal supports are forced to do more. Supports that are specifically because of the person’s disability should continue to be funded. Shifting the burden even more onto families, carers, and schools is not sustainable or appropriate. Unpaid labour must not be the default for providing supports to people with disabilities. Although my daughter has received a small amount of funding for support workers to assist with her care (6 hours per week), I still provide most of her care. She requires 24/7 help with everything - I feed her, toilet her, roll her in bed, assist with every part of her daily needs. I had to give up my work, and barely get any time for anything other than caring for her, sleeping, eating. I struggle to have any time for leisure, exercise, medical or other appointments, social contact with family or friends, or even going to church. Expecting families to carry such a load is ridiculous. We’re now scared to ask for more supports even though they are needed, or she might lose what little she has.

I am also deeply concerned that the wider impact of the proposed Bill and changes will be extremely negative for women. Women carry the brunt of family caregiving responsibilities, often being expected to sacrifice their lives for the sake of caring for others - be it children, partners or parents. Women often lose jobs/careers, leisure and social time, hobbies and travel opportunities as they shoulder the load of caregiving. And they generally do not receive the level of payment for this work which is given if outside paid providers do the caring work. Many do not even qualify for carer payment because of basing eligibility on household income. (I for example, do not qualify for carer payment as my husband earns over the threshold - despite having to give up work and now our household income is less yet our medical expenses have increased enormously.) Women also make up a high proportion of those working as disability providers - support workers, allied health etc. So cuts to the workforce will again directly impact women the most - many who do this work to fit around family responsibilities themselves.

Parts of the NDIS law that helps people with disabilities get the supports that they need must not be removed.

It’s not ok to change the understanding about functional capacity, and change how people are assessed for supports needed. People with disabilities need assessments that account for their actual real life, situations and context. People who need help may not get it, which could cause terrible harm and damage.

It is vital to continue having experienced professionals involved in making decisions about people’s supports needed - reports and assessments from skilled practitioners who know the person and have professional experience. My daughter’s situation is very complex, medically unusual and not well understood. Having an Occupational Therapist who knows my daughter and understands her diagnosis and functional capacity has been vital to access the NDIS, as well as inform her plan requirements.

If all types of providers have to be registered, this must be made affordable and manageable for individuals and small businesses. Choice and control over who provides supports is absolutely necessary for participants. People must be allowed to continue using providers who they know and who know them and are part of the disabled person’s care team, are safe and trusted, and already providing care to the person. My daughter’s care requires a continuity of care with the same team, no new people, who she takes time to know and trust and be able to cope with. Changes in support workers and having people unfamiliar with the complexity of her care needs would literally cause her harm and deterioration.

Automated decision making is not an appropriate mechanism for assessing the complex needs of people with disabilities. The decisions about funding and supports provided require human oversight and final say, must be able to be reviewed or appealed and must ensure “robodebt” disasters are not repeated. My daughter requires assessment which can fully understand her very complex condition and specific support needs. Also, there is serious risk of terrible harm with automated systems for supposed debt recovery when genuine mistakes are made, harsh penalty systems replacing a care based framework etc.

The changes to plan reassessments being proposed are not fair or appropriate. Participants need to be able to request reassessments. Support coordinators and plan managers need to be able to continue requesting this for participants if needed, as well as the person, their family or nominee. Plans should not just be rolled over without the opportunity for reassessment if desired by the participant. There is opportunity for better NDIA processes and less total plan reassessments at every time a change is needed. When my daughter was funded for her first plan last year in October, some AT and Home Modifications were refused - because the NDIA needed assessments and reports about those specific needs. They funded the OT to do them. When we then submitted the request in January for the specific AT and Home Modifications, the entire plan got reassessed, and reduced, when the only thing changing was that we had now provided the specific items to be assessed. This was a waste of time and effort so soon after the initial plan. And although

  • nothing had changed in the rest of her situation, they decreased supports. This makes us scared to ask for anything else as well. And note it took over 3 months for a decision to be made - well over the 21 days required.

  • It is not appropriate to suspend people’s plans without ensuring they actually have been contacted and are able to respond.

  • The NDIA should not have the power to come into people’s homes and investigate them.

  • The proposed changes to permanency and accessing treatments must not be adopted. People’s context must remain as a consideration for appropriate treatment - such as finances and geographical location. The NDIA should not be able to refuse access if a treatment option is not appropriate or available TO THEM in their situation. It would not be acceptable to require people to try treatments that they cannot access for them in their situation, and especially if there is not solid evidence that they would make a difference to having the disability/impairments and requiring supports.

  • Participants must be able to appeal decisions and have access to the ART. There must remain mechanisms for review and appeals, and the NDIA has to be held accountable for its decisions. There needs to be safeguards and due legal process available when you think a decision is wrong.

  • The proposed option of alternative support systems is also inappropriate, as these may not actually exist, may not be accessible, may not be suitable or may not meet reasonable and necessary criteria. There really aren’t options for most of the supports people with disabilities need outside of the NDIS. This is especially relevant to me. When my daughter became severely disabled, we had months of no support from anyone anywhere - it was not available. Every agency or support provider I sought help from all said - you need to get her onto the NDIS - there isn’t any help unless you have that. She was too young for one possible option who only provided care for adults. There were NO supports despite her needing “nursing home level” care. I spent hours and hours on the phone, on websites, writing emails - to over 30 organisations and service providers including our local health district, palliative care, and private providers. NOTHING! I just got told that the NDIS is all there is. And it took months to get her access application done, and then months for it to be assessed. And there were no supports. So this is a very real concern to me and to so many others who rely on the NDIS to provide reasonable and necessary supports for people with disabilities.

  • And this also means that other systems will end up overloaded and dealing with crisis issues for people who stop being supported properly or at all by the NDIS. This is cost-shifting - away from NDIS but onto the health/Medicare system, or aged care

or other crisis services. People with disabilities will continue to have support needs even if the funding is reduced or withheld completely. The needs won’t just disappear, but the changes to support provision will then cause distress, damage and potentially disastrous fall out for those people in terms of safety and wellbeing, family coping, and shift costs and burdens to other already struggling systems. It is utterly ridiculous to just decide to cut or remove funding for people already assessed as needing the supports. And seeking to slow growth by capping numbers is also ridiculous, as people will continue to have or acquire disabilities and need supports.

The NDIS is an INSURANCE scheme, meant to provide support available for all Australians should they need it. It’s not welfare. You can’t prevent becoming disabled, or stop needing supports for the sake of a budget.

The proposed changes are causing so much distress to my already extremely fragile daughter, and to me and my husband. We are worried for our daughter and ourselves, and whether she will get the help she needs. I am already suffering with poor mental and physical health as her carer - losing the little we have would be dangerous for us all. And so many in our disability community are experiencing terrible fear, distress and fallout from the proposed changes.

These are just some of the concerns I have. In summary, the proposed Bill in its current form is harmful and should not be passed by Parliament. Furthermore, genuine consultation and co-design with people with disabilities and their representatives should be mandated for any further proposed Bills and changes to the NDIS. I also urge that the wasteful, inefficient and unnecessary bureaucratic and administrative costs of the NDIA be carefully assessed for actually reducing costs of the NDIS. And please, I beg of you to ensure that people with disabilities continue to get the supports they need to live.