Rights on Fire: Defending Against NDIS Cuts

 

Rights on Fire: Defending Against NDIS Cuts

A submission to the Senate Committee - Bolshy Divas, June 2024

Contents

1.   Introduction

2.   Executive Summary

3.   Findings and Potential UNCRPD Breaches

o    Finding 1: Definition of "NDIS Supports"

o    Finding 2: Incorporation of APTOS Principles

o    Finding 3: NDIA Powers under Section 32H

o    Finding 4: Changes to Planning and Assessments

o    Finding 5: NDIA Powers to Revoke Access

o    Finding 6: Debt Recovery and Plan Management

o    Finding 7: Key Details Left to NDIS Rules

o    Finding 8: Lack of Oversight Measures

o    Finding 9: Risk of Segregated Settings

o    Finding 10: Exposure Draft Amendments

o    Finding 11: Limited Appeal Rights

 

 

Introduction

The proposed amendment bill for the National Disability Insurance Scheme (NDIS) present changes that pose significant threats to the rights and well-being of people with disability. Rather than improving the scheme, these amendments are primarily driven by cost-cutting motives that risk undermining the foundations of support, choice and control that the NDIS is supposed to provide.

This document outlines the critical findings and breaches of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) inherent in these proposed changes. These proposed changes threaten to set the disability rights movement back twenty years, limiting the lives of disability and in many cases presenting serious dangers to lives.

Australia supported a vision for the future of people with disability – a national scheme that would be supported in a bipartisan way, a scheme that would not rely on a postcode lottery or be run by States and Territories, a scheme that would make sure that all Australians have access to reasonable and necessary care and support in the same way Australians have access to Medicare.

Australians expect better from our governments, our disability representative bodies and disabled persons organisations.

These changes aren’t able to be fixed with further amendments or by changing words in the Bill. The Bill must not be passed. Instead of destroying our rights and lives, destroy the idea that we cannot live free and equal, in the same way as other Australians.

Executive Summary

The amendments to the NDIS threaten to narrow the scope of supports, destabilise access, and impose undue burdens on participants.

After careful review of both the Bill, explanatory memorandums and a series of amendments, irreconcilable issues still remain with the proposed Bill. Here is a summary of the issues, which include:

·        The proposed definition of ‘NDIS supports’ risks excluding essential services, undermining the ability of people with disability to live independently.

·        Incorporating the 2015 APTOS policy principles without proper co-design and returning responsibility to States and Territories will lead to confusion and inconsistency.

·        Broad powers given to the NDIA to impose requirements on participants lack clear restraints, infringing on autonomy and control.

·        The changes to planning and assessments do not ensure a whole-of-person approach, risking underfunding and inadequate support.

·        Expanded powers to revoke access and require information without robust safeguards put vulnerable participants at risk of losing critical supports.

·        The punitive approach to debt recovery and plan management exposes participants to financial hardship for inadvertent misuse of funds.

·        Key details left to future NDIS rules limit scrutiny and fail to guarantee co-design.

·        The lack of strong oversight measures undermines transparency and accountability.

·        The amendments may incentivise segregated settings, contrary to UNCRPD requirements.

·        Finally, the limitations on participants' appeal rights restrict access to justice and legal recourse, breaching multiple UNCRPD articles.

Comprehensive reforms and safeguards are essential to ensure the NDIS delivers on its promise of supporting the rights and needs of people with disability – but they are not articulated within this Bill.

A new approach is required, which focuses on investing in people with disability and our families, in line with the bipartisan vision originally imagined for the National Disability Insurance Scheme.

Findings

The findings below have been compiled after careful analysis of the Amendment Bill, the explanatory amendments and exposure draft, the NDIS Review and Analysis and the subsequent proposed amendments.

We have reviewed the United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) and have noted breaches and potential breaches in the Amendment Bill against the UNCRPD.

Finding 1: The proposed definition of "NDIS supports" in Section 10 is problematic. It risks narrowing the range of supports funded, is unstable and open to volatile interpretations that could exclude necessary supports. This definition should not shape NDIS access decisions under sections 24-25.

Potential UNCRPD Breach: Article 19 of the UNCRPD recognises the equal right of all persons with a disability to live independently and be included in the community. It requires States Parties to take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community.

The proposed Section 10 definition of "NDIS supports", by potentially narrowing and destabilising the scope of funded supports, could undermine the ability of people with disability to access the supports they need to live independently and be included in the community. If this restrictive definition is then used to shape NDIS access decisions under Sections 24-25, it may prevent some people with disability from accessing the scheme and the supports it provides, breaching their Article 19 rights.

The DPOA (Disabled Persons Organisations Australia) in their "Ending Segregation of People with Disability" position paper emphasises that "NDIS supports should enable the equal participation and inclusion of people with disability in the community, as required by Article 19." The UN Committee on the Rights of Persons with Disabilities in its General Comment No. 5 (2017) also stresses that access to individualised assessed supports is essential for living independently in the community.

Finding 2: Section 124, which incorporates the 2015 APTOS policy principles, is poorly drafted and will lead to disputes about what is "in or out" of NDIS. It does not reflect proper statutory design and rule of law values like clarity and consistency. The interface between NDIS and mainstream supports needs to be carefully defined through co-design, not by pressing APTOS into a role it was never designed for.

Potential UNCRPD Breach: Article 4(3) of the UNCRPD requires States Parties to closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations in the development and implementation of legislation and policies and in other decision-making processes concerning issues relating to persons with disabilities.

By incorporating the APTOS principles into legislation in Section 124 without proper co-design with people with disability and their representative organisations, the government may be breaching its obligations under Article 4(3). The confusing and potentially restrictive application of APTOS in this way, without the active involvement of the disability community, fails to uphold the participatory and consultative spirit of the UNCRPD.

Dr Darren O'Donovan in his submission to the inquiry on the Bill notes: "We need to carefully design early intervention outside and inside the scheme – sit down with the mental health sector and design early intervention programmes... We need to go right upstream to get the best outcome... in the words of Professor McGorry, 'the missing middle'." This underscores the importance of co-design in delineating responsibilities between the NDIS and other service systems.

Finding 3: The Bill gives the NDIA broad, unchecked powers to impose requirements on participants in relation to supports under Section 32H. This needs clear restraints to avoid undue burdens on participants and uphold choice and control.

Potential UNCRPD Breach: Article 3 of the UNCRPD sets out general principles that include individual autonomy including the freedom to make one's own choices, and independence of persons. Article 12 reaffirms the right of persons with disabilities to equal recognition before the law and to enjoy legal capacity on an equal basis with others, including access to the support they may require in exercising their legal capacity.

The broad powers given to the NDIA under proposed Section 32H to impose requirements on participants in relation to their supports, without clear checks and balances, risks infringing on participants' autonomy and independence in decision-making about their supports. It may limit participants' ability to make free choices and exercise control if NDIA has unchecked powers to dictate how and by whom supports are provided.

The NDIS Independent Advisory Council, in a 2021 statement, emphasised that "The NDIS is about maximising participant choice and control over supports and services" in line with the UNCRPD. Dr O'Donovan also notes in his submission "The amendment to s32H, that allows the NDIA to prescribe providers is not person-centred and arguably not consistent with the UNCRPD..."

Finding 4: The changes to planning and assessments in Sections 32K-32L do not ensure a whole-of-person approach:

·         Basing funding only on impairments related to NDIS access risks underfunding support needs arising from co-occurring conditions.

·         Using the term "impairments" rather than functional capacity risks funding not reflecting a person's actual support needs in their daily life.

·         The legal status of assessment reports is unclear - participants need rights to obtain and challenge these if dissatisfied.

Potential UNCRPD Breach: Article 26 of the UNCRPD requires States Parties to take effective and appropriate measures to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life, through comprehensive habilitation and rehabilitation services and programmes.

The proposed changes to planning and assessments in Sections 32K-32L, by failing to ensure a whole-of-person approach, may not adequately provide for the comprehensive supports required under Article 26. Basing funding only on impairments directly related to a person's NDIS access (Section 32L(3)), rather than holistically considering a person's co-occurring conditions and functional support needs in their daily life, risks compromising the maximisation of independence and full inclusion.

The NDIS Review, which the Bill aims to implement, in fact recommends that "budget setting for participants needs to take a whole-of-person view, rather than focus on specific functional impairments... reflecting a 'whole of person approach' based on individual need and the degree and nature of supports required for the participant to meet their goals."

Dr O'Donovan cautions in his submission regarding Section 32L(3): "It risks an abstract evaluation of impairments isolated from the life context of the person... If a participant is blind, has a physical disability and has a cognitive impairment, who is to say how the NDIA will record this? If the person's primary disability is listed as vision impairment, how will they be identified as having a cognitive disability that is connected to the capacity building support..."

The unclear legal status of assessment reports and lack of clear rights to access and challenge them also potentially breaches Article 12 and the right to equal recognition before the law, as well as Article 13 on access to justice.

Finding 5: The expanded NDIA powers to revoke access and require information under Sections 30-30A create risks for vulnerable participants who may be unable to understand or respond to requests in time, leading to sudden loss of critical supports. Robust safeguards and active case management are needed.

Potential UNCRPD Breach: Article 28 of the UNCRPD recognises the right of persons with disabilities to an adequate standard of living and to social protection without discrimination on the basis of disability. This includes ensuring access by persons with disabilities to social protection programmes and poverty reduction programmes.

The expanded powers for the NDIA to revoke a participant's access under Sections 30-30A, particularly if they fail to respond to information requests within 90 days, may lead to vulnerable participants losing access to crucial NDIS supports. This risks compromising their standard of living and access to social protection under Article 28, especially if they are unable to understand or respond to the request due to their disability.

There is also a potential breach of Article 4(3) if these expanded revocation powers were designed without close consultation and active involvement of people with disability and their representative organisations, to build in appropriate safeguards and protections.

According to the submission by Villamanta Disability Rights Legal Service, under the proposed Sections 30-30A: "There is a very real risk that participants will be asked for information the NDIA already has or will provide information that does not find its way to the person making the decision... All of which is not apparent to the participant, whose only option is to call the contact centre (if they can) and try to discuss the situation. As noted above, this is a fairly hit and miss endeavour, and unlikely to actually resolve the matter."

Finding 6: Debt recovery and plan management provisions expose participants to punitive compliance action for inadvertent misuse of funds under the complex new support definitions. A trust-based, guidance-focused approach is needed as per the NDIS Review recommendations.

Potential UNCRPD Breach: Article 28 of the UNCRPD on adequate standard of living and social protection requires States Parties to take appropriate steps to safeguard and promote the realisation of the rights of persons with disabilities to social protection.

The punitive approach to debt recovery and compliance action for inadvertent misuse of funds under the proposed changes may undermine participants' right to NDIS supports as a form of social protection under Article 28. The complex new definitions of "NDIS supports" in Section 10 combined with the strict compliance approach, rather than a trust-based supportive approach, exposes participants to risk of financial hardship and loss of supports for unintentional mistakes.

This is inconsistent with the NDIS Review recommendations (referenced in the Bill's Explanatory Memorandum) for "a trust-based approach to oversight of how participants spend their budget, with a focus on providing guidance and support, rather than punishment for genuine mistakes."

Villamanta's submission emphasises: "Entirely replacing the current NDIS Supports regime, while also introducing harsh consequences for participants if they, or their paid NDIS supports, get it wrong, is going to create unsafe situations for participants... There must be a requirement in the Bill for the NDIA to proactively support the participant to build their capacity to understand the identified misuse and how that can be avoided in the future."

Finding 7: Key details are left to NDIS Rules not yet drafted - e.g. the "funding assessment method", despite this being critical to participant outcomes. This limits scrutiny. Co-design of the Rules with people with disability is essential but not guaranteed in the Bill.

Potential UNCRPD Breach: Article 4(3) of the UNCRPD requires close consultation with and active involvement of people with disability, including children with disabilities, through their representative organisations in decision-making processes concerning issues relating to persons with disabilities. This extends to the development of legislation and policies to implement the Convention.

Leaving key details that have significant impacts on the rights of people with disability to the NDIS Rules, with no guaranteed mechanism for co-design and consultation, limits the ability for robust scrutiny and input by the disability community. This is not aligned with Article 4(3) obligations.

Dr O'Donovan points out: "Core details like the 'funding assessment method' and supporting Rules need to be transparently developed and evaluated before legislation that enables major changes to participants' supports is passed. Stronger safeguards, a commitment to individualisation, and rigorous oversight are essential to upholding the UNCRPD."

The Bill's Explanatory Memorandum states that the Rules "will be developed in consultation with people with disability, the disability community, health and allied health technical professionals, and with all States and Territories." However, there is no provision in the Bill's text itself mandating this co-design process for the Rules.

Finding 8: There is a lack of strong oversight measures in the Bill to ensure transparency and accountability in NDIA decision-making, especially funding decisions. The "method" needs evaluation to identify any inequitable impacts.

Potential UNCRPD Breach: Article 33 of the UNCRPD requires States Parties to designate one or more independent mechanisms to promote, protect and monitor implementation of the UNCRPD. It also requires civil society, in particular persons with disabilities and their representative organisations, to be involved and participate fully in the monitoring process.

The lack of strong, independent oversight and monitoring measures for NDIA decisions in the Bill, particularly around funding, fails to fully implement Article 33. Without appropriate mechanisms to scrutinise decisions for transparency, accountability and any discriminatory or inequitable impacts, the rights of people with disability cannot be adequately monitored and protected.

Dr O'Donovan recommends: "The Bill does not reflect a full commitment to implement all required effective measures under Article 19. The subsection does not recognise the broad right in the opening paragraph, or the right to support choices in expressed in (a), it evades the obligation to support de facto equality in (c). The language incorporated is literally just one example, one instance of implementing what is a broad Convention obligation."

The NDIS Independent Advisory Council has also previously stressed "the importance of the NDIS being transparent and accountable to people with disability in delivering on the objects of the NDIS Act."

Finding 9: The Bill's changes risk incentivising more segregated/congregate settings for people with disability to manage costs, rather than promoting choice, control and inclusion as required by the UNCRPD. Stronger safeguards are needed.

Potential UNCRPD Breach: Article 19 of the UNCRPD, as mentioned, recognises the equal right of all persons with disabilities to live independently and be included in the community. It requires States Parties to take effective and appropriate measures to facilitate full enjoyment by persons with disability of this right and their full inclusion and participation in the community.

Changes in the Bill that potentially incentivise more segregated or congregate settings for NDIS participants as a cost-saving measure would directly undermine Australia's obligations under Article 19. Facilitating or encouraging segregation rather than full inclusion and participation in the community is a clear breach of Article 19 rights.

The Villamanta submission notes: "The changes risk funnelling participants towards specific 'disability housing' options rather than promoting greater choice and inclusion in the community... The Bill places perceived bureaucratic convenience over engaging with, and making decisions about, people's actual needs."

DPOA's "Ending Segregation of People with Disability" position paper also asserts: "Continuing to support segregated and congregate settings is inconsistent with Australia's obligations under Article 19... Segregation of people with disability in congregate and institutional settings is discrimination and a breach of human rights."

The UN Committee on the Rights of Persons with Disabilities in its General Comment No. 5 (2017) on Article 19 clarified that living independently and being included in the community is a right that "entails an obligation on the part of States parties to ensure that people with disability have access to a whole range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community..." It also reiterated "the need to shift from institutionalisation to independent living."

Stronger safeguards are therefore essential in the Bill to ensure the NDIS does not revert to segregation as a default approach, but continues to enable real choice, control, independence and community inclusion for people with disability in line with Article 19.

Finding 10: The amendments to Section 10 in the Exposure Draft do not fundamentally address the concerns raised about the narrowing of supports, access decisions, planning, debt recovery, and transitional provisions. The shift away from "reasonable and necessary supports" to "reasonable and necessary budgets" and the potential for differential treatment of participant groups based on impairment type or other characteristics remain.

Potential UNCRPD Breach: Several Articles of the UNCRPD are potentially impacted by the issues that remain unresolved in the Exposure Draft amendments, including (but not limited to):

·         Article 5 on equality and non-discrimination

·         Article 12 on equal recognition before the law

·         Article 19 on living independently and being included in the community

·         Article 26 on habilitation and rehabilitation

·         Article 28 on adequate standard of living and social protection

Dr O'Donovan summarises: "In short, the exposure draft fails to make essential changes to resolve fears that the Bill fails to match the spirit, aspiration or contents of the UNCRPD. An approach based on simply refining our old ways of defining and delivering disability support is insufficient to meet this historic moment..."

Despite the amendments, the shift from "reasonable and necessary supports" (which reflects an individualised approach based on each person's unique needs and goals) to a "reasonable and necessary budget" approach still raises questions about how well the scheme will deliver on its promise of choice and control and support the realisation of UNCRPD rights.

As noted by the NDIS Independent Advisory Council: "Getting the balance right between an individual's right to exercise full choice and control and the financial sustainability of the NDIS is critical." However, "the rights of people with disability should be the primary focus in any reforms."

The potential for differential treatment of participant groups based on impairment type rather than individual needs also risks breaching the non-discrimination obligations in Article 5 of the UNCRPD.

Overall, the Exposure Draft amendments do not comprehensively address the multiple ways the Bill in its current form may undermine or fall short of full implementation of UNCRPD rights. Substantial further work and co-design with people with disability is required to resolve these issues and ensure the NDIS delivers on its human rights objectives.

Finding 11: Participants' recourse to justice and appeal rights are limited under the proposed changes:

·         The Bill does not provide a clear right for participants to obtain or request a replacement assessment if they are dissatisfied with their needs assessment report. The CEO has discretion to decide if a replacement assessment is needed (Section 32L(7)), but there is no equivalent right for participants to initiate this.

·         Decisions about whether a participant meets the disability or early intervention requirements are not reviewable under the Bill. This means participants cannot challenge being found ineligible or having their access revoked on the basis of not meeting these requirements.

·         Participants can only seek a review of the overall decision to approve their statement of participant supports, not individual elements of the plan like the funding amounts or support types (Section 99). This limits their ability to target specific issues.

·         Decisions to not pay an NDIS amount under proposed subsection 45(4) or raise a debt retrospectively must be reviewable.

Potential UNCRPD Breach: Article 13 of the UNCRPD requires States Parties to ensure effective access to justice for persons with disabilities on an equal basis with others, including through the provision of procedural and age-appropriate accommodations, in order to facilitate their effective role as direct and indirect participants, including as witnesses, in all legal proceedings, including at investigative and other preliminary stages.

The limitations on participants' appeal rights and recourse to challenge NDIA decisions under the proposed Bill risk breaching their right to access to justice under Article 13. Not providing a clear right to request a new assessment, not allowing appeals on eligibility decisions, restricting appeals to only the overall plan approval rather than specific support decisions, and lack of clarity on appealing debt decisions all create barriers to participants effectively challenging NDIA decisions that impact their rights and interests.

Article 12 of the UNCRPD on equal recognition before the law may also be engaged, as it requires States Parties to ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person's circumstances, apply for the shortest time possible and are subject to regular review by a competent, independent and impartial authority or judicial body.

Inadequate appeal and review rights in the context of NDIA decision-making, particularly around vital issues of eligibility, supports and funding, may fail to provide the necessary safeguards required under Article 12. Participants should have the ability to effectively assert their legal capacity to challenge decisions that do not respect their rights, will and preferences.

Villamanta's submission emphasises: "The AAT would be unable to consider and review the merits of such a decision...We do not want people not appealing their specific concern because 'I might lose everything' or 'We don't know what they'll do if we make an issue of it.'...Another critical recommendation in this basket is that participants must have clarity on their rights to request a replacement assessment and the Tribunal's right to have one carried out. This must be done by amending section 32L(7)."

Dr O'Donovan also recommends: "At the technical level I believe using 'impairment' as a standalone term is not the best way to achieve or express this vision. The Bill should, outside the context of access, always use the compound term 'impairments and the impact which these have on their functional capacity' or, for convenience, 'functional impairments'." He notes that the impacts of any impairment on functional capacity "should be placed in primary legislation even if (a) is not adopted."

In conclusion, the limitations on merits review and appeals in the Bill not only breach good administrative law principles but also undermine Australia's obligations under Article 13 of the UNCRPD to ensure effective access to justice for people with disability. Placing restrictions on the ability of participants to challenge decisions that have a profound impact on their rights and daily lives is not consistent with ensuring equality before the law and enabling people with disability to fully assert their legal capacity.

Comprehensive merits review and appeal rights are essential elements of the NDIS system to ensure accountability, transparency and the protection of participants' rights in line with the UNCRPD. The Bill does not adequately enshrine these safeguards.

We reject this Bill and the premise that the lives of people with disability should be narrowed, limited or compromised. We encourage decision makers to reject this Bill and encourage them to prevent its passage through the Senate. 

Accepting and introducing these changes to our National Disability Insurance Scheme would be contradictory to the UNCRPD, human rights principles and Australian values.