National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1040
Subject: Submission into the Senate inquiry into the National Disability Insurance Scheme
Amendment (Securing the NDIS for Future Generations) Bill 2026.
My name is I am living in regional Victoria, am in my early 30s, and am
currently a NDIS participant. I’m writing to you today to express my concerns I have over the
proposed bill for amendments to the NDIS. I appreciate the opportunity to express my
concerns regarding the bill.
Under the current legislation, the NDIS must make decisions about a participants plan within
21 days. Under the new legislation, this will be extended to 90 days. 90 days is too long,
especially when people are living with dynamic conditions that can change rapidly. Delaying
a decision by 90 days could negatively impact a participant’s health and well-being. Plans
will be suspended if no contact can be made with participants within 90 days. I am concerned
this will affect some of the most vulnerable in our community if plans are suddenly stopped.
How will contact be defined by the NDIA, and how many attempts will be made to contact
participants? It is all too easy to miss a phone call from a private number. Letters in the mail
can go missing. Emails can fail to send, and sit unsent in outboxes for weeks. Are there
safeguards in place to ensure that participant details, such as phone numbers and address, are
kept up-to-date? The sudden suspension of a plan will lead to harm to participants and leave
them without the necessary care they need to live, and I’m concerned that it may even lead to
deterioration or deaths in some cases.
Another change that this bill proposes is that all available and appropriate treatments must be
tried before access is granted to the scheme, regardless of whether this is affordable or
practical for participants. This ignores the reality that most disabled people live in. Many
disabled people live in poverty due to not being able to work. Pensions in Australia are below
the poverty line, which leaves little to spend on care for our disabilities. Being disabled is
expensive, and it costs more to achieve the same standard of living as able-bodied person.
Intersectionality must be recognised, as those living with more than one marginalised identity
are disproportionately impacted by poverty, such as First Nations, BIPOC, and CALD
persons. Many disabled people cannot afford the treatments and care that they need, as the
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1040
cost of seeing medical professionals in Australia is out of reach for many, especially when
living on the Disability Support Pension, or Jobseeker. Medicare rebates for specialists are
often low, leaving the patient to pay the majority of costs out-of-pocket. This will also
disproportionately impact regional and rural participants, especially First Nations
participants, who may be unable to travel to regional and city areas for medical appointments
and treatment.
I am also concerned for the ME/CFS community, given that Australia has not adopted
treatment guidelines for this disabling condition. Many practitioners still recommend graded
exercise therapy for ME/CFS. These recommendations are based on the PACE trial, a study
that was flawed and has since been proven to be harmful to patients. I am concerned that the
NDIS will push graded exercise therapy as an appropriate treatment for ME/CFS, when it has
been shown that even mild exertion significantly worsens symptoms. What safeguards will be
in place to ensure that the ‘appropriate treatments’ are actually appropriate for each disability,
and will not cause harm or deterioration to participants?
Under the new legislation, there is a presumption that parents are responsible for providing
substantial care and support for children with disabilities instead of relying solely on the
NDIS. Parents of children with disabilities are some of the most dedicated, compassionate
and attentive parents I have ever met. They are also often overwhelmed with the challenges
of parenting a disabled child, and are already at breaking point with how much they are
expected to do; they negotiate accommodations in inaccessible schools, research their
children’s conditions, advocate for their children in medical settings, fill in paperwork,
emotionally regulate their children, and so much more, on top of the responsibilities of being
a parent. Many of these parents are also carers to other family members, and have paid
employment, and many neglect their own needs on a regular basis, such as sleep and
nutrition, to support their children. Stripping parents of the support they need will have a
detrimental impact on families. It is likely that this impact will be hardest on women, who
already shoulder the majority of caring responsibilities within family dynamics, especially in
regard to disabled or aging family members. This may impact women’s participation in the
workforce, as some may have to become full-time carers to their children if supports are cut.
This would undermine the government’s previous attempts to encourage women back into the
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1040
workforce and further disadvantage women who are already struggling with caring
responsibilities.
The bill would also give the minister power to make cuts to participants plans based on a
class (for example, age, disability or funding type). These powers are too broad and will leave
people without the services they need. Although people may share the same diagnosis or
other characteristic, disabilities are as unique as each individual. No two people experience
the same disability in the same way. Making determinations based on diagnosis or age,
instead of a case-by-case basis, will leave people without the care that is best suited to them
and their circumstances. Disabled people are more than just a diagnosis. We are family
members, friends, employees, carers, volunteers, and community members. The needs of the
whole person need to be considered to support us adequately, so we can live ordinary lives.
Under these new ministerial powers, it is noted that the minister must consider safeguards,
and in this case, the safety of participants. What safeguards will be in place to ensure that
participant safety is not compromised due to funding changes? Who will be responsible for
ensuring that participants are safe? What accountability will there be if safety is
compromised? In the event that funding changes lead to a compromise of safety, how will
this be rectified? Participant safety is of the upmost importance, and this bill does not give me
any confidence that safety of participants will be addressed accordingly.
Currently, access to this scheme is determined on a case-by-case basis, but under the new
legislation there will be rules about who can apply, and must also qualify under the new
functional capacity definition. The definition of functional capacity under the new bill is
narrow (the ability to undertake a task without support from another person, assistive
technology or modifications), and does not consider a person’s environmental or personal
circumstances. Environmental and personal circumstances impact every single person, every
day, and even more so when a person is disabled. For example, a person may have the
mobility to go to grocery store or chemist by themselves. But if it is too noisy, too crowded or
too busy, or the person is stressed or in sensory overload, this task may become impossible
without support. Society is not built for disabled people, and we face barriers every time we
leave the house. Having a ramp or automatic doors does not make a building, or a task,
accessible. There is so much in regard to accessibility that is ignored and unimplemented, and
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1040
this excludes disabled people from public life. Having supports to do these tasks is essential
in a world where disabled people do not have the appropriate accommodations.
The changes to early intervention are also concerning. It will change from “mitigating or
alleviating the impact of the person’s impairment” to “benefit[ing] the person by reducing the
impact of the person’s impairment”. This will be detrimental to people with degenerative
conditions, whose quality of life may depend on early treatment. In my own case, my
disability, which was present from birth, was not diagnosed until my late twenties, and I went
without support for the majority of my life. I believe that if I had received support, my health,
mental health and wellbeing would not be as poor as they are now, and I would need less
support as an adult. Delaying support until a disability has a significant impact on a person’s
life will have more long-term costs, and may mean more pressure is placed on our already
struggling healthcare systems. Early intervention should be seen as an investment in disabled
people and their futures, and not as a cost we can’t afford.
From what I have seen in my own communities, disabled people are not against NDIS
reform. We understand that changes need to be made to ensure that the system remains
sustainable for future generations. But this must not come at the cost of any participants
health and wellbeing. Only addressing the expenditure of the NDIS without addressing the
problems which led to these conditions is a short-term fix. It will not solve the problems
embedded in the system. We need to look at all aspects of the NDIS to make the system
sustainable. Tearing funding away from participants will only cause harm to the most
vulnerable in our society. I ask that the Government withdraw this bill. The NDIS does need
reform, but it needs to be done in consultation with disabled people – nothing about us
without us. People with disabilities want to live ordinary lives like everyone else, and in an
inaccessible society, we need individualised supports to do it. I would like to thank the
committee for the opportunity make a submission to this inquiry.
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