Submission on the NDIS Amendment Bill

Name: Renée Heaton

I am a: Disabled person

I DO NOT SUPPORT THIS BILL

I am a member of the NDIS Reform Advisory Committee (RAC). The RAC and Disability Reform Ministers Council met same day, on 22 May 2026 just a week after the Bill was introduced, to unpack and analyse the Bill through the lens of lived experience and expertise. What we discovered was that if you put any human-being into this framework, they break. We have significant concerns about many of the changes proposed within the Bill and the way in which the community and, so it seems, the state and territories themselves have been excluded from the development work that has led to this point.

As an individual, a disabled human rights-bearing citizen, and a NDIS participant I find this Bill regressive and punitive, potentially leading to a situation where NDIS participants will not be able to exercise their human rights in this, our well-developed, advanced, and rich country.

This Bill does not, despite the many quite frankly ridiculous claims it does, align with the UNCRPD nor the recommendations of the NDIS review. Many of the provisions in this Bill strip away the human rights of disabled people by removing the dignity of choice and control that enables a good life.

Additionally, the increasingly medicalised framing of disability is deeply concerning. People with disability have fought long and hard against the quest to ‘fix’ us. We are just getting to a place where the social model of disability is more widely accepted and a foundation for inclusion. We see disabled people out and about, in all public places and spaces, participating, socialising, contributing and belonging. This is good for all of us. Going back to reducing disabled people to a medical anomaly that needs to be addressed is cruel and wrong.

The NDIS has made significant improvement to my life. Prior to accessing the NDIS my support, including personal care that is intimate and sensitive, was delivered by four separate providers, just for bare minimum support. I had strangers entering my home and seeing me naked and at my most vulnerable on a regular basis. I frequently had changes to my care without my input or consideration of my circumstances. And often my support was simply not provided, leaving me in crisis. And I still had to pay for this second-rate so-called “care”. Much of my income, which was hard earned because, as I said, sometimes I couldn’t even get out of bed to go to work because my support was cancelled or forgotten, went in co-payments. In 2014 I experienced the most significant depressive episode in my life. I couldn’t conceive of a life that I had control of, where I could not only survive but flourish, and I didn’t want to live like that.

When I finally accessed the NDIS (I was in the last cohort of the roll-out) my life changed. What it meant for me was a life of my choosing. I chose my support workers. I chose what time they came to assist me. I chose the sorts of activities I participated in. I chose the skills I wanted to grow. I chose the therapies that worked for me. I could go out with friends. I was a reliable employee. I got promoted. I flourished. What my life looks like now is completely different to 10 years ago and my community, my country, the economy are better for it.

I love the NDIS. I know it is one of the best things this country and the government has ever done for disabled Australian’s. I want to see it sustained long into the future. The narrative surrounding this Bill is that fraud and bad practices must be stopped for the sake of the NDIS, but there is little in this Bill that addresses fraud or agency inefficiency and instead cuts real supports from real people’s lives.

I ask the committee to listen to the people who will be most impacted by the changes proposed in this Bill and recommend significant rework to be done with the community and States and Territories who cO-fund the NDIS. Re-read the NDIS Review Report and recommendations in full, acquaint yourselves with the UNCRPD and the Human Rights convention properly, and recommend a different course of action.

My main concerns about this Bill are:

• The Bill is not consistent with Australia’s obligations under the UNCRPD or with a human rights-based approach to disability. Rather than strengthening equality, autonomy, and participation, it introduces measures that risk limiting disabled people’s access to the supports we need to live self-determined lives, exercise choice and control, and participate fully in our communities. A Bill that restricts support, narrows access, and places additional barriers in front of disabled people cannot credibly be said to uphold the rights recognised in the Convention.

• Many of the proposed changes are regressive and risk moving Australia further away from the social model of disability that underpins the UNCRPD and contemporary disability policy. Instead, the Bill leans toward an outdated medical model by focusing on impairment, treatment, and functional deficit while failing to recognise the social, environmental, and systemic barriers that disable people. Measures that restrict access to the Scheme, reduce the level of support available, or require people to undergo treatment in order to demonstrate eligibility are not rights-based reforms; they are a step backwards.

• The Bill fails to require any consideration of an individual’s personal circumstances or environment when functional capacity assessments are used to determine eligibility for the NDIS. That is a serious flaw. Functional capacity cannot be understood in the abstract because the impact of the same impairment will differ significantly depending on a person’s living situation, available supports, social and economic circumstances, and the barriers in their environment. Best practice frameworks, including the International Classification of Functioning, recognize that functioning is shaped not only by impairment but also by context. By excluding these factors, the Bill risks producing assessments that are inaccurate, unfair, and disconnected from the reality of people’s lives.

• The proposal to require people to have undertaken all possible treatments before they can access the Scheme is deeply problematic. It creates an unfair and unrealistic barrier by assuming that every treatment is suitable, available, affordable, or safe for every individual. In practice, this would force people to pursue interventions that may be ineffective, harmful, inaccessible, or contrary to their own circumstances and informed choices simply to prove their eligibility. It also disadvantages those who cannot afford private treatment or who live in areas where services are limited effectively turning access to the NDIS into a reverse means test. Rather than recognising disability as a matter of functional impact and support need, this approach medicalises access and places the greatest burden on those who are already most marginalised.

• Cuts to social and community support funding will have immediate and harmful consequences for participants, families, communities, and other service systems.

• The Bill also gives the NDIS Minister extraordinary power to determine funding cuts across participants. That is deeply concerning. Decisions of this magnitude should not be left to ministerial discretion particularly where they can reduce supports below what people have been assessed as needing. It concentrates too much power in one office weakens transparency and accountability and creates a real risk that broad fiscal decisions will override individual rights needs and evidence. o These cuts do not make need disappear They shift responsibility and cost onto states and territories which co-fund the NDIS and will then be expected to pick up the

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               fallout through health, mental health, housing, justice, education, and crisis systems.
             In practice, that means states and territories may end up paying twice: once through
               their contribution to the Scheme, and again through increased demand for other
             services when people lose the supports that keep them safe, well, and included.
     o  Reducing social and community supports will remove people from their communities
          and confine many to their homes. For people with intellectual disability and people
            with Down syndrome, these supports are often what make it possible to build
              relationships, learn skills, maintain routines, participate safely in the community, and
            continue developing independence. Taking them away risks increased isolation,
               distress, deterioration in mental health, loss of confidence, reduced opportunities for
           growth and learning, and heightened safeguarding risks. It is entirely reasonable to
            ask whether health, mental health, safety, and justice systems are ready or adequately
           funded to deal with the consequences of that harm.
     o  There is also a broader economic impact. When people are prevented from leaving
        home and participating in ordinary community life, local businesses lose customers
          and communities lose contributors. Community participation funding supports real
          economic activity: people catching transport, buying lunch, getting haircuts, attending
              classes, volunteering, and engaging in work and civic life. Cutting these supports
            reduces both participation and the economic flow that comes with it.
     o  These cuts will fall especially hard on the very people the Government says it wants
              to preserve the Scheme for. The Government’s own Impact Analysis indicates that
              social and community participation funding is heavily used by people with
               intellectual disability, people with Down syndrome, and people with neurological
             conditions, stroke, and spinal cord injury. For many of these participants, this funding
                 is not incidental or optional; it is what makes community life possible. Cutting it risks
             re-segregating people, locking them back into their homes, and undoing years of
            progress toward inclusion and belonging.
                 The impact on families will be profound. When community access, day
                   programs, or other supports are cut, families are expected to fill the gap. For a
                    parent of an adult child who requires intensive support, those services can be
                     the difference between being able to work, maintain an income, and sustain
               some balance in life, or being forced to leave paid employment and provide
                      full-time care at home. That pushes families toward financial hardship, social
                        isolation, and exhaustion.
                  This burden will fall disproportionately on women, who still undertake most
                  unpaid caring work. In practice, cutting these supports risks pushing more
                   mothers, sisters, and other women carers out of the workforce and back into
                     poverty, reinforcing gender inequality while shifting the cost of disability
                    support onto families.
     o   It is also fundamentally irrational to assess a person’s needs, determine the supports
             required, build a budget on that basis, and then impose an across-the-board reduction
              that leaves those assessed needs unmet. That undermines the logic, fairness, and
              integrity of the Scheme itself.

 The proposed Technical Advisory Group is not required to include disability-specific assessment expertise, nor lived experience of disability. That is a serious omission. A body advising on disability eligibility and assessment should not be permitted to operate without the knowledge and expertise necessary to understand disability well. It also directly undermines the principle of “nothing about us without us”, which the Government repeatedly invokes but is not meaningfully upholding here. At a minimum, the Group must include both people with lived experience of disability and members with genuine disability-specific assessment expertise.

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I am asking the Senate Committee not to pass this Bill in its current form. I am asking the Committee

to tell Parliament to go back and do this properly: follow the NDIS Review, follow the sequence it set out, keep the rights framework intact, preserve the joint venture, and actually involve disabled people and the broader community in co-designing what comes next. That is the kind of reform we all deserve. As a member of the RAC I am ready and willing to be of service in this regard.

Many thanks for your consideration.

Renée

Renée Heaton