NDIA Accountability Project

Need to establish a CRPD framework for the NDIS

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Submission to the Community Affairs Legislation Committee Inquiry on the National Disability Insurance Scheme Amendment

Getting the NDIS Back on Track No. 1) Bill 2024

To the committee secretariat community.affairs.sen@aph.gov.au From Micheline Lee May 2024

My interest My interest in writing a submission stems from personal and professional experience.

I have lived all my life with a disability and been a National Disability Insurance Scheme (’NDIS’) participant since 2017. I am author of ‘Lifeboat — Disability, Humanity and the NDIS’ Quarterly Essay 91, which was selected by the Grattan Institute in their 2023 Prime Minister’s Summer Reading List. For twenty years I worked as a human rights lawyer. My roles included director of a disability discrimination legal service in the Northern Territory, lawyer to the Victorian Equal Opportunity and Human Rights Commission, and legal adviser for the Department of Justice on the reform of the Equal Opportunity Act 2010 (Vic). I was also chairperson of the Northern Territory Disability Advisory Committee. I am currently undertaking Doctor of Philosophy research on the NDIS and the Convention on the Rights of Persons with Disabilities (‘CRPD’) at the University of Melbourne.

COMMENTS ON THE NATIONAL DISABILITY INSURANCE SCHEME AMENDMENT (GETTING THE NDIS BACK ON TRACK NO. 1) BILL 2024 (“THE BILL”)

This submission focuses on the need to establish a CRPD framework for the NDIS. Many lives have improved because of the NDIS. However, the NDIS, in its first 10 years of operation, displayed an inadequate understanding of the CRPD and often applied a medical model and discriminatory market approach rather than the social and human rights model promulgated by the CRPD. This resulted in a scheme that was difficult to use and inequitable, and which led to the neglect of broader accessibility measures necessary to enable greater participation in the community by disabled persons.

The Bill is the first stage of legislative reform that proposes to give effect to the recommendations of the Independent Review into the NDIS as compiled in the Working Together to Deliver the NDIS report. In this first stage, the aim of the Billl is “… to establish an enabling architecture for rules and future reforms to restore the original intent, integrity, consistency and transparency of the scheme.” The main reforms introduced in the Bill include ‘new framework plans’ and a new needs assessment process that are intended to be more reflective of the supports a participant needs; a ‘reasonable and necessary budget’ intended

to provide more flexibility in how participants spend their funding; categories of supports that can be funded; and new powers to revoke a participant’s plan or restrict how a participant can spend flexible funding in their plan.

This Bill provides little detail on the proposed reforms. This is to be developed in future rules. What the Bill does is provide for the new and expanded rule- and instrument-making powers for these future rules.

The Bill misses the mark on what is fundamentally needed in establishing a framework for the reform of the NDIS. An explicit shift is needed in the framework of the NDIS to ensure that it is based on a human rights approach. The very first recommendation of the NDIS Independent Review was that the NDIS should be part of a unified system of support based on human rights.$ This recommendation of the Independent Review should be implemented in the Bill.

MY RECOMMENDATIONS 1 Amend the NDIS Act to adopt a CRPD human rights approach The current references to the CRPD in the National Disability Insurance Scheme Act 2013 (Cth) (’NDIS Act’) are inadequate to embed a human rights approach in the scheme. The NDIS Act references the CRPD in its first goal which is to ‘in conjunction with other laws, give effect to Australia’s obligations under the Convention on the Rights of Persons with Disabilities’.^ The NDIS Act ‘objects of the Act’ section also includes goals such as choice and control, and participation in the community.$. In addition, the NDIS Act provides that actions under the Act should be guided by General Principles which include co-design and support to exercise choice.# Such provisions alone are inadequate to embed a human rights approach in the design and operation of the scheme. They are stated in terms of general goals and principles that can easily be ignored and misinterpreted in the design and implementation of the scheme, as the last 10 years of the scheme’s operation has demonstrated.

A major shortcoming of the NDIS so far has been its failure to implement a multi-dimensional approach that responds to the reality of who the person is and the real causes of disadvantage. Individual supports alone cannot increase inclusion, and in some cases can perpetuate segregation and inequality. The CRPD is based on ‘inclusive equality’. This is a multi- dimensional approach which recognises that for any measure to be effective in increasing participation and inclusion, it needs to embrace: “(a) a fair redistributive dimension to address socioeconomic disadvantages; (b) a recognition dimension to combat stigma, stereotyping, prejudice and violence and to recognize the dignity of human beings and their intersectionality; (c) a participative dimension to reaffirm the social nature of people as members of social groups and the full recognition of humanity through inclusion in society; and (d) an accommodating dimension to make space for difference as a matter of human dignity.”^

   $ The Bill, cl 31: amendment to insert s 30A to the Act.
   ^ Independent Review 2023 ($), 33.
   # NDIS Act, s 3(1)(a).
   $ See eg, NDIS Act ($), ss 3(1)(b),(e),(g).
   # See NDIS Act ($) , s 4(9A).
   ^ Convention on the Rights of Persons with Disability Committee, General Comment No. 6

on Equality and Non-Discrimination (2018), paragraph V 11

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Incorporating Inclusive Equality Approach into NDIS

The NDIS core function is to provide individual disability supports. It is easy to succumb, as the NDIS did, to a medical model of disability which “fixes” or “minimises” the individual impact of the impairment without looking at the broader issues at play. To achieve its goals, the NDIS needs to respond to the differential and specific needs of the individual as well as focus on wider systems of disadvantage in mainstream society. Therefore in providing individual supports, the NDIS needs to also combat intersectional discrimination, and to ensure it is fostering voice, respect and awareness raising, and accessible systems.

The NDIS Act should expressly provide for the ‘inclusive equality’ multi-dimensional approach of the CRPD. Therefore new provisions must be included in the Bill that embed this approach in the design and operation of the scheme. They will include provisions on choice and control, accessibility requirements, awareness raising, reasonable accommodation and co-design.

In relation to the new rule making powers under the Bill, the Bill should require that every rule made under the Act must respond to specific needs as well as combat intersectional discrimination; and seek to target deep-rooted structural inequalities and to guarantee the empowerment of disabled people as well as to ensure that they can participate and be included in mainstream society on an equal basis with others.

2 Incorporate the CRPD approach as well as the concept of ‘reasonable accommodation’ into the rules that will determine what supports a participants get. The NDIS Act currently provides for “reasonable and necessary” supports which are defined by criteria which have been problematic in their interpretation. The Bill sets up a different system for considering how much and what type of funding a person should get in their plan. The funding is based on a holistic assessment of the persons needs rather than the current calculation on a support-by-support basis.

Section 10 of the Bill introduces categories of support that can be provided under the NDIS, some of which adopt wording from the CRPD. The adoption of the CRPD wording on its own is not likely to be helpful. Detail needs to be given as to the aim of section 10, and it needs to be located within a CRPD framework (see my recommendation 1) for it to be effective.

The duty to provide supports and personal assistance exists under the CRPD article 19 right to independent living. While the duty to provide supports already exists, the reasonable accommodation provision in Article 5 and as described by the CRPD Committee can assist in defining the extent of the duty. As the CRPD committee has stated, the duties contained in Article 5 CRPD to prohibit discrimination and to provide reasonable accommodation span all human rights in the CRPD. The Committee has provided an unequivocal statement that an accommodation is reasonable if, according to the perspective of the disabled person, it meets their needs and the purpose for which it is provided. The duty to provide the reasonable accommodation is only limited if the duty-bearer can demonstrate that such provision would impose a disproportionate or undue burden.

CPRD GEN COMMENT NO 6. 25

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The Bill should require co-design in every aspect of the NDIS from its governing, policies and rulemaking to the formulating of individual plans. The NDIS Act provides that one of the general principles guiding actions under this Act is that people with disability should be included in a co-design capacity. This provision has had little effect in ensuring co-design. A system of co-design needs to be developed and specified in the NDIS Act that ensures real participation, and is transparent and accountable. In particular, a system of co-design needs to be incorporated in the NDIS rule-making powers proposed under the Bill and in the development of tools such as the proposed ‘needs assessment tool’.

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Replace an insurance approach with a human rights approach The NDIS Act explicitly adopts an insurance approach. An insurance approach falls far short of, and in several vital ways is inconsistent with a human rights approach. The NDIS Act needs to be amended to make clear that it adopts a CRPD human rights approach. Section 3(2)(b) of the NDIS Act which provides for an insurance approach should be amended so that the approach is confined to a funding model where it is not inconsistent with a human rights approach.

  • [10] Section 4(9A) of the NDIS Act
  • [11] NDIS Act, s 3(2)(b).