Impact of NDIS reforms on disability rights and access to essential supports (Participant experience)

Submission 2629

To

The Senate Committee on Social and Community Affairs

Inquiry into the National Disabiltiy Insurance Scheme Reform Bill:

About me: I am a PhD candidate in my final stages. I specialise in the relationship between disability and the rule of law under the Australian constitution. In particular I focus on how conceptions of disability shapes the power and influence of Chapter III courts.

I am also epileptic, autistic (Level 2) and have a serious mental illness that impacts my capacity to work and study. I was diagnosed with autism by 5 independent professionals before the age of 12.

My scholarly concerns: Reasonable and necessary:

• Reasonable and necessary is a legitimate and appropriate legal standard. It is certainly appropriate for the government to provide legislative guidance for the application of such a standard, but the law has been implementing similar standards for a long time.

International Law:

• The rights that will be affected by the NDIS are not just social, economic and cultural rights (which governments are permitted to work towards as their means allow). They are not even merely rights which are protected by international instruments that have not been fully incorporated into Australian law. However, these violations are blatant and apparent to all.

• I will point out several of the most apparent concerns: ○ The definition of disability in the Convention on the Rights of Persons with Disabilities is interactive and social. The NDIS Bill’s insistence upon refusing to take into account individuals, puts every decision made under this bill in violation of the Convention. ○ The targeting of Community and social participation is a direct attack on art 30 of the Convention. The Rights Affected by the NDIS cuts are not just international law rights. They are Australian democratic common law rights;

• These NDIS reforms will directly affect the most basic rights upon which all common law democracies are based, dating back to, and even before, Magna Carta itself. These include rights to life, liberty, bodily autonomy, equality before the law, and procedural fairness, the protection of the state as parens patriae, and control over one’s home and place of living.

• Fundamental entrenched principles relating to these rights include that they cannot be arbitrarily interfered with by the Executive.

• Whilst historically, exceptions have been made for disabled persons, there is also a growing recognition that equality before the law, which includes catering to relevant differences only, and not irrelevant ones, requires adjustment for relevant differences in

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ability to achieve substantive equality in respect of key democratic rights. Conversely, it requires that any interferences with basic democratic rights be subject to judicial oversight and in the most isolated cases of extreme need.

• Access to the NDIS has a direct impact on the right to life. People use the NDIS for feeding, hygiene, and basic functions. In addition, the mechanism as it currently works allows them to live at home without the risk to their lives that institutional care poses, and with care workers acting as independent monitors. As you may or may not know, Australia is one of only two countries in the world where the Committee Against Torture cut short its visit due to refusal of access to institutions. We know that these places are dangerous and need monitoring. The data is overwhelming.

• Social and community participation, funding for mobility aids and a large number of other directly impacts the liberty of people using the NDIS. The lauded habeas corpus case of Antunovic v Dawson demonstrated that denying a disabled person choice of living arrangements could amount to a violation of the fundamental common law right of liberty.

• This Bill is expressly designed, as explained in its explanatory memoranda to allow greater executive power over NDIS supports, and to allow for more automated streamlined assessment. ○ This will enable the Executive to have arbitrary power to deprive disabled people of their liberty, or subject them to “restraints not shared by the public more generally” (Antunovic) ○ This will undermine equality before the law, by reducing the power to cater to relevant differences in disabled persons situations. ○ The ability for judicial oversight and review of these decisions will be limited, if they are made using an automated system and legislative guidance is limited. ○ On the other hand, the presumption of legality, and other legal protections may place the NDIA in violation of the law if this scheme continues as is. And will certainly cause conflicts with other laws.

The Value of Consent and Co-design

• The use of government authority to make these changes without the cooperation of the disabled community is morally illegitimate and undemocratic.

• The failure to co-design reforms is irresponsible.

• Co-design leads to more efficient and effective outcomes.

• The committee should be under no illusions that these changes do not take place with the cooperation, consent or even consultation of the disabled community. They are deeply opposed.

• For more information on the nature of co-design and its benefits I recommend the work

of Marc Steen

• This Bill in fact is a rejection of the disabled community’s opinions in several ways. ○ It does not implement, but rather rejects the 2023 NDIS review ■ The references in extrinsic material such as the explanatory memorandum, to the 2023 NDIS review, are not proof of meaningful co design.

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■ Even if the government were acting on the recommendations of that review, it is not sufficient to meet the definition of co-design. ■ The government has cherry-picked a handful of actions from a list of 23 recommendations supported by hundreds of recommended actions, many of which can only work in concert with each other. ■ Several key reforms directly contradict recommendations of that review ○ The disabled community provided their opinions to the Disability Royal Commission and only 5% of its recommendations have been accepted. It is therefore not possible to

• The basic principles of the rule of law require more disabled consultation and less executive powers ○ The foundation of the state’s historic powers to intervene in disabled persons’ autonomy has been the “welfare principle”. In theory, that requires decisions to be made with absolutely no other considerations in mind except the welfare of the person in question. This is impossible to do if a person is required by the Bill to consider financial sustainability as a whole. ■ Whilst the CEO of the NDIS is not exercising parens patriae power, it is the ultimate foundation of all interferences with disabled autonomy, so when decisions about guardianship are being made, there is likely to be a conflict between the principles of the new NDIS and the parens patriae principle. ■ Moreover, behind the welfare principle is the acknowledgement of two deeper principles: a duty by the state to protect disabled persons, as well as a requirement that interference with the basic principles of autonomy can only take place when general social benefits are not being considered. However, this bill requires decisions to be made in violation of both those principles. ○ It is generally recognised in modern democracies, that the legitimacy of a government’s authority over others is based on the consent of the governed in some form or another. ■ The Australian High Court established that sovereignty resides in the people of Australia in the Capital Television Case and beyond. ■ In the Capital Television Case, the Mason court focussed on the importance of representatives governing on behalf of the people. ■ This poses two problems for the NDIS BIll

• Firstly, it gives sweeping powers to unelected persons to make decisions that will directly affect fundamental democratic rights without sufficient legislative guidance, including liberty, life and the right to participate in politics. The degree of executive discretion and the inclusion of a Henry VIII clause directly undermines representative government.

• Secondly, representative government still resides on certain foundations. John Rawls suggested that the consent of the governed can be understood as hypothetically what a reasonable

Submission 2629

person would consent to if they were forming the first government. Blackstone argued that liberty restrictions should exist in a democracy only to the extent necessary to allow persons to exist in harmony.

• The standard of “reasonable and necessary,” supports thus directly reflects the bedrock principles of democracy, and to allow it to be overridden threatens those principles. ○ The principle of procedural fairness in administrative law does not apply to policy level decisions. This means that, when provisions of the Bill allow groups of individuals or supports to be dealt with at a macro level by executive decision, there is no opportunity for persons to be heard on matters that directly affect their lives, including their capacity to experience basic human rights. ■ This is particularly problematic due to the rights affected, being foundational democratic ones. ■ This is particularly problematic, because the other methods of accountability in our democracy will not, under this bill, serve their corrective purpose.

• The legislative limits on discretion are limited, and provide limited human rights protection. This means that the elected representatives of disabled persons are not overseeing these matters on their behalf.

• The difficulties invoking other oversight mechanisms such as the judiciary for disabled persons are well documented. The Hate Speech Campaign:

• The dedicated press campaign to justify these changes was reckless as to whether violence or destruction of property could occur. It is occurring and disabled people are afraid of it occurring. This means that those involved in this campaign are dangerously close to meeting the definitions of criminal hate speech under s 80 of the Commonwealth Criminal Code.

• Sadly for the government, the Redbridge report provides evidence of intention to change public opinion in a negative way.

• In the case of the Victorian Equal Opportunity Act s 102E, I believe all the criteria have been met for an unlawful vilification claim. The exemptions for political debate in s 102G are by no means extensive enough to prevent liability for this hate speech campaign. It requires reasonableness, good faith and public interest.

Personal Costs and experiences: Certainly in the case of myself and my family, denying autistic people access to the NDIS has proved a false economy.

I grew up as an autistic person without the NDIS. I was pulled out of school at 9 and homeschooled. That limited my mother’s earning capacity, and compromised my education. Today, I cannot access the mental health and social and life skills support I need to function

Submission 2629

effectively. This has delayed my PhD completion, which has cost my university and also prevented me from earning a higher income.

As an epileptic person, I am particularly concerned about the requirements to exhaust all appropriate treatment options. It is genuinely terrifying. This wording leaves no room for manoeuvre. It is absolute. In my case, it is virtually impossible for an epileptic person to exhaust all treatment options, and it takes many years of titrating up and down on different medications. By the time we tried my current medication in a last ditch effort, I had a 5% chance of ever getting control.

Ultimately, in order to exhaust all treatment options, I would have had to consent to brain surgery. The preparation for this brain surgery is to spend 5 days unable to leave your bed while doctors and nurses attempt to induce up to 5 grand mal seizures. Under any definition, outside of medical treatment this would be considered torture. I know because I undertook the test myself. If this test is successful, the doctors can identify the part of your brain that MIGHT be causing the seizures, and cut it out. I don’t know anybody whose seizures have actually stopped, but I know plenty of people who have been left with brain damage and short term memory loss.

Under the current legislation, I would need ten years of waiting and trying different medications, and then I would be forced to incur brain damage, before I could access the NDIS. In the meantime, there are well-documented cases of disabled persons dying because the NDIS did not fund specialist epilepsy supports. For example, there is the story of Liam Danher.

My recommendations:

1. This bill is a fundamentally flawed attempt to target disabled people and should not be passed.

2. At minimum the following things should occur before this bill is revisited: a. Proper co-design should occur. Co-design means meaningful involvement of the disabled community at every stage, not a chance to comment on a shortened senate committee.

b. The recommendations from the Royal Commission that would lead to greater so- called “Foundational supports” should be implemented. These would shift the burden onto the community as a whole and thus reduce the budget of the NDIS, and reduce the need to apply for the NDIS. These should include those related to:

i. Reform of the Disability Discrimination Act

1. Make it more easily enforceable so that it does not rely upon individuals for enforcement and provides meaningful penalties and compensation.

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2. Repairing the Disability Discrimination Act so that it is no longer possible for the judiciary to read it down and render it ineffective., as in cases such as Sklavos.

3. Requiring universal design in all contexts, rather than relying upon standards in critical areas such as building accessibility. ii. Human rights legislation.

4. This could take the form of a general human rights law that prescribes equality before the law or

5. A Disability Rights Act, applying universally, which includes provisions requiring all functions to be compatible with the act to the maximum extent possible, and requires that courts interpret the law in a way which is compatible with human rights to the greatest extent possible.

6. Robust regulation of restrictive and abusive practices. In most Australian jurisdictions these remain in a regulatory gap, such that millions of complaints go uninvestigated and unexplored every year.

a. This should include regular surprise inspections of anyone providing services under the NDIS by an independent body with enforcement powers that can be used.

3. It is imperative that, should this bill pass, it does not include the following provisions, for the sake of our democracy:

a. Please remove the Henry VIII clause. This is named after a monarch who predated our current democratic system for a reason. It gives the Executive a power it should no longer have.

b. Limit executive power with clearly justiciable guidelines. At no point should the Executive have free reign to decide what is reasonable and necessary, or whether something deemed reasonable and necessary is to be funded. The standard of reasonable and necessary is not unfamiliar to the law. Major constitutional issues have been decided by a “Reasonable and proportionate” test. It is not unnecessarily vague. There is no need to override something that the law has deemed “reasonable” with Executive discretion.

c. Ensure that appeal and review rights are robustly protected and extended. These rights permit inevitable problems to be addressed fairly. In the age of algorithms and artificial intelligence, they provide a crucial “human in the loop” to correct against bias. They also allow for clarification of law and policy through liminal cases. In the long term, this will increase the clarity of the law and allow for greater consistency. My research demonstrates that reasoning by analogy and liminal cases is a better way to address the complex challenges posed by disability than more syllogistic reasoning from abstract categories.

d. Clarify the meaning of “financial sustainability” as a consideration in decision making by ensuring that it includes:

Submission 2629

i. Consideration of costs to all governments and government funded schemes that will flow from the decision. This will prevent, for example, an ultimate increase in costs due to hospitalisations. ii. Consideration of the economic benefits of a spend, such as its contribution to employment of the person or their carers, and the long term savings to the NDIS and healthcare from capacity-building.