Submission to the Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme
Amendment (Securing the NDIS for Future Generations) Bill 2026
by Andrea Simmons
1 June 2026
Government mandated treatment must not be the price paid for NDIS support.
The requirement for a person with disability to exhaust ‘appropriate’ treatment options before becoming entitled to NDIS support amounts to coercive control, is a breach of human rights, is unworkable, unaffordable and has the potential to result in massive over-treatment.
There is a long and devastating history of people with disability being subjected to treatment to “fix” them which is cruel, damaging and/or wholly or mostly ineffective. Many treatments, once thought to be “appropriate” subsequently become unfashionable or unpopular with doctors, are without rigorous evidence or are subsequently invalidated or superceded by new or improved science.
When the people subjected to treatment, do not have the decision-making power or are experiencing devastating symptoms, treatments undertaken have commonly been allowed to expand well beyond the medical maxim to first do no harm and to fall way outside what can be said to be in the best interests of the person.
In the somewhat dystopian future being proposed by the government the voice of people with disability in relation to their treatment choices will effectively be silenced when their need for NDIS support is high. Someone else, whose interests will not be theirs but instead be cost minimisation (NDIS) or experimental (for medical research purposes) or profit maximising (in the case of treatment providers) will be empowered to determine the treatment to which they will be subjected and the degree of risk, pain, damage or other side effects they will be required to bear if they wish to receive NDIS support.
How will the decision be taken about which treatments become appropriate preconditions to NDIS access? Almost inevitably it be answered in part by resort to a standardised list developed for administrative ease. It is well known however that standardisation of treatment does not often lead to good outcomes for individuals. The success of any treatment depends on a great many factors particular to an individual including their general health, degree of control over their circumstances, personality, environment, lifestyle, community and level of support.
For almost any health issue or injury leading to disability there are now multiple erudite sources of advice about treatment options. No two experts are likely to provide exactly the same advice. New options are being developed all the time. Which advice it is advisable to take depends on a consideration of the options available at any point in time alongside the personal factors outlined above and the cost and availability of the proposed treatment.
Th requirement to exhaust treatment options to acquire eligibility for NDIS support will almost inevitably lead to a proliferation of lobbying to government in relation to treatment options by providers and medical researchers. In such a scenario even the most well meaning and skilled of NDIS administrators will find it difficult to put the interests of the person with disability first.
Importantly the proposed legislation does not so far require them to do so. Perhaps scenarios have been envisaged by the Government in which the NDIS decision-maker will choose not do so? This is particularly concerning.
We know that in many situations the marginal returns to a person from continuing with invasive treatment diminish with time and the costs to a person’s mental and physical health rise. In many cases it would amount to cruel and inhuman treatment (contrary to Article 15 of the United Nations Convention on the Rights of Persons with Disabilities) to require , on the threat of withholding necessary support, a person to continue to pursue “appropriate” treatment to the fullest extent that such options are available. Yet a continuation of treatment delivers a financial benefit to treatment providers and a reduction in NDIS outlays. The proposed legislation thus provides structural incentives for NDIS decsion-makers to cost shift to the health system and promote over-servicing without regard to the wishes and quality of life of the person with disabilities. In this regard it is important to note that the UN Convention in Article 15 clearly says ‘no one shall be subjected without his or her free consent to medical or scientific experimentation’.
Only the person with disability themselves (to the extent possible) should be making these life altering and life trading decisions. Only they know what they can bear in terms of the balance between treatment and personal cost. This balance will be different for everyone. They must be empowered to make these decisions without fear generated by the possibility a government threat to refuse ‘reasonably and necessary’ life support.
The threat to refuse ‘reasonable and necessary support’ unless ‘appropriate’ treatment is undertaken is similar in nature and impact to threats or actions taken by intimate partners that are now now being criminalised across our country as abusive behaviour or coercive control. In NSW, for example, if an intimate partner withholds or threatens to withhold necessary financial support from a person unless they comply with demands made of them this is deemed ‘abusive behaviour,’ an offence under the NSW Crimes Act and subject to imprisonment for a term of up to 7 years. People disabilities should not be subject to similarly life damaging ‘abusive behaviour’ or coercive control by their government.
No treatment is neutral in it’s impact and few treatments impact only one part of a person’s mind or body. A treatment designed to have a positive impact on a disability may easily have a less beneficial impact on some other aspect of a person’s health, functioning or private life. Any treatment decision needs to have regard to the whole person, their family and community. The best person to balance these competing priorities is the person themselves, sometimes together with their loved ones, sometimes with independent decision making support.
Research tells us that 70% of the benefit of any treatment comes from the placebo effect. If the person being treated does not have confidence in a treatment it is unlikely to lead to a beneficial outcome. This means it is vital for the success of a treatment that a person with disability is in favour of any treatment that is to be undertaken.
Finding appropriate treatment, getting to appointments and complying with medical protocols prior to treatment are all matters with which people with disabilities may need support. All this takes time, sometimes years. A person with disabilities is likely to need support to engage in the ordinary activities of life in the period leading up to and throughout the period of treatment.
The success of a great many treatments relies heavily on a beneficial post treatment environment and lifestyle and ongoing regular therapy and medication. An assessment of the effectiveness of a first treatment can frequently lead to the decision to undergo another. Reasonable and necessary NDIS support must be available throughout the treatment period and any post treatment
rehabilitation period. It is a nonsense to deny NDIS support until treatment is complete when treatment necessary to continued life or functioning may be ongoing through out a person’s life.
The United Nations Convention on the Rights of Persons with Disabilities (The Convention) was ratified by Australia in 2007. The Convention is governed by general Principles to be found in Article 3. The first of these ‘(a)Respect for inherent dignity and individual autonomy including the freedom to make one’s own choices, and independence of persons’ is clear about who is to make decisions in the life of a person with disability. When the NDIS makes access to ‘reasonable and necessary support’ conditional on submission to treatment they have deemed ‘appropriate’ the government has constructively removed decision-making autonomy from the person with disability.
The Convention in Article 17 which deals with protection of the integrity of the person says ‘Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.’ Treatment for any kind of disability has an impact on the physical and/or mental integrity of a person so an NDIS constructive takeover of treatment decision making for a person with disabilities is contrary to the Convention.
Article 12 (2) of The Convention requires States Parties to recognise that ‘persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.’ If reasonable and necessary support is denied to people with disabilities unless they have first completed ‘appropriate’ treatment they are constructively being prevented from exercising their legal right to determine their own health treatment on an equal basis with others. This is an extraordinary takeover by the Government of the life choices of a person with disability.
Investment in support for People with Disabilities is an investment in societal well-being.
‘Reasonable and necessary’ support to people with disabilities gives back to the community more than 2.5 times the amount spent on that support. In other words by withdrawing this support our community is giving up at least 2.5 times the benefit being derived. This is a figure I have seen in the media and on more than one platform. It has not been refuted by government. Although I have not seen the basis for this figure I understand how it might be reached. The Productivity Commission, when it considered this issue in its 2011 Report into Disability Care and Support (The Productivity Commission Report) came to the conclusion that the benefits of this support easily outweighed the costs.
When a person with disability has the support they need to live an ordinary life they can participate in and contribute to their communities in ordinary ways. This can be through employment, volunteering, being a supportive friend, colleague, neighbour, or family member. Their health, both mental and physical, benefits significantly. This is borne out by the work done over many years on the Social Determinants of Health. Their lives and the lives of those who love and care for them are richer and more rewarding.
People with disabilities with ‘reasonable and necessary’ support are more likely to be part of the workforce. People with disabilities with ‘reasonable and necessary’ support are more likely to be able to engage effectively in the education system and to develop and later make use of skills that benefit themselves and the community. People with disabilities with ‘reasonable and necessary’ support will, on average, have medical treatment needs more comparable to those of the general community. People with disabilities with ‘reasonable and necessary’ support are less likely to need a family member to either give up work or do less demanding work to care for them.
People with disabilities with ‘reasonable and necessary’ support are less likely to need extended hospital stays or high level medical treatment. People with disabilities with ‘reasonable and necessary’ support are less likely to be in prison People with disabilities with ‘reasonable and necessary’ support are less likely to live in poverty, become homeless or victims of crime and/or experience mental ill-health. All of the above consequences of a failure to provide ‘reasonable and necessary’ support are far more costly to the individuals, their immediate community of loved ones and to the community at large than is the cost of providing ‘reasonable and necessary’ support in the first place. From the above it is possible to see that the failure to provide ‘reasonable and necessary’ support multiplies and expands outwards to cost not only the person with disability but many other persons and systems. Ultimately the strength of our community and our sense of humanity is compromised. The costs are distributed, less visible and borne unevenly but they do not go away.
Why is our government choosing to shift support costs to the most vulnerable and already poorest members of our community, to their families and communities, and in so doing create greater calls on the Disability Support Pension the Carer’s Allowances and a multitude of predominately State budget line items? They have been clear that the answer lies in fact that the NDIS figure in the Budget is just too high. How can it be too high if for every dollar spent there is a $2.5 return. Surely in these circumstances NDIS support must be regarded as an investment in rather than a drain on the overall health and well-being of the Australian people.
The Government has argued that a reduction in NDIS outlay is in and of itself a good thing. It claims that the NDIS, through the its level of funding has lost its social licence. I believe, however, that the community wants people with disabilities and their families to be able, as far as possible, to live ordinary lives and it wants to maintain the benefits that accrue to individuals and our society when reasonable and necessary supports are provided. Where I think the community has lost faith is in our Government’s willingness/ability to deliver their part of the NDIS social contract, as described by the Productivity Commission Report: “to create awareness by the general community of the issues that affect people with a disability, and the advantages of inclusion” to ensure that reasonable and necessary support is provided on the basis of a functional assessment of people’s capacities across the broad range of life activities to ensure that service providers do not rort the system, the NDIS, people with disabilities or their loved ones to ensure the good quality of the services being received by people with disabilities to ensure that the States are providing the usual State funded services including education, health, transport etc. to people with disabilities as well as to their general populations to ensure that people with disabilities and their volunteer carers are not falling through the cracks in government service systems to enable research that will assist in delivering both early evidenced based interventions and innovation in support for people with disabilities
Government documents and statements have alluded to recognition of institutional failure by the NDIS in each of the above-mentioned areas but instead of fully acknowledging this publicly and setting out a positively focused plan to correct these failings the Government has chosen to direct the attention of the public and its public servants to NDIS costs and cost-cutting. It has done nothing to contextualise the Scheme in terms its the benefits as an investment in the well-being of our community and little to explain the likely benefits of it improving its performance in the itemised areas.
The government has also failed to acknowledge that each of the people currently in receipt of NDIS ‘reasonable and necessary’ support has had their needs assessed, often on multipe occasions, using
tools of government’s creation. It is incumbent on the Government to ensure moving forward that there is a pathway to meet these assessed needs in a way that does not compromise the health or well-being of the person with disability or their loved ones.
Prior to the NDIS the States funded a variety of patchy services to meet the needs of people deemed to have less than severe disabilities. The Productivity Commission Report proposed the development of a range of Tier Two supports to respond to these needs but the NDIS did not go on to do this work in any meaningful or coherent way. At the same time it took from most of the States the entirety of their disability funding allocation including that which might have otherwise been directed to Tier two supports. This means that for the life of the NDIS, these services have largely been absent and the service and workforce knowledge to sustain them lost.
Prior to the NDIS there had been a pattern of families of members with disabilities taking up the slack in a patchy support system. This ordinarily looked like at least one parent, usually the woman, absenting themselves, either partially or wholly, from the workforce to tend to the needs of the person with disability. This was more feasible in a time when two incomes were not required to afford rent or a mortgage and public housing was more readily available. Far too often the lack of outside support led to family breakdown with one parent (most often the women) living on a pension in public housing and providing support to the person with disabilities who lived with them while the other parent absented themselves almost entirely from the situation. Thus the provision of reasonable and necessary support for people with disabilities is very significantly a women’s issue and the absence of it a recipe for poverty for entire families.
One of the Government’s NDIS cost cutting proposals is to significantly reduce the financial support for the social and community participation of people with disabilities. This proposal fails to take into account what we know about the social determinants of health, i.e. that social and community connection is vital to a person’s health and well being, that social isolation leads to an increased risk of suicide, mental health issues and generally poor health. For this reason, even during COVID lock-downs exceptions were made to allow visits from another person to someone living alone and people were permitted to leave their home for an hour each day to exercise. There was also the recognition that long term lock-downs were damaging and unsustainable so they were lifted long before COVID disappeared.
A failure to provide reasonable and necessary support for a person to leave their home and engage in community activities is for some people with disabilities tantamount to a life sentence of isolation. How can this even be a consideration for a government in a wealthy country like ours? In this regard the UN Convention is clear that States parties to The Convention are to take measures to ensure the full and effective participation and inclusion in society of people with disabilities (See for example Article 3).
Author’s Background
From 2010 to 2013 I was the inaugural CEO of Disability Advocacy Network Australia (DANA) Pty Ltd and for 5 years prior to that the Manager of the ACT Disability Aged and Carer Advocacy Service (ADACAS). On DANA‘s behalf I made many submissions to Government on the development of a national system of support for people with disabilities. These submissions were designed to draw together the views and promote the interests of the people with disabilities that Advocacy agencies across Australia represented.
In 2013 I recognised that my long term condition, Chronic Fatigue Syndrome/ME had became so severe and unpredictable that I was unable to continue working.
Since that time I have maintained a strong interest in the development of the NDIS and my work history has prompted many discussions with individuals in some way connected with the NDIS, as either a participant, family member, carer, worker, medical professional, therapist or advocate.