NDIA Accountability Project

Human rights approach to NDIS planning for participants with disability

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Micheline Lee

Joint Standing Committee on the National Disability Insurance Scheme

ndis.sen@aph.gov.au

Dear members of the Joint Standing Committee on the NDIS

Planning Review

I am a participant with the NDIS, and a PhD candidate at University of Melbourne conducting research concerning the NDIS and the Convention on the Rights of Persons with Disabilities

(“CRPD”).1

My recommendations are in two parts.

Part 1 General recommendations on adopting a human rights approach to the NDIS that will guide the reforms on planning.

  1. NDIS planning should help give effect to Australia’s obligations under the CRPD and enable people with disability to exercise choice and control, as per the NDIS Act objects.2

  2. Adopt the CRPD human rights model of disability in implementing the NDIS Act. This model rejects the medical model of disability and affirms the social model of disability. It further acknowledges that “disability is one of several layers of identity” and requires that laws and policies take the diversity of persons into account.3

  3. Employ the CRPD inclusive equality framework to determine whether an NDIS law, policy or practice is likely to fulfil human rights obligations and to guide reforms. The CRPD is based on inclusive equality. There are four dimensions to this framework involving: (i)Redistribution to address socioeconomic disadvantage; (ii) Recognition of individual dignity and combatting prejudice; (iii) Countering barriers to participation and inclusion; and (iv) Achieving structural change to accommodate difference. 4

  4. Closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations in the design, policies and procedures to implement a CRPD compliant planning process.5

  5. Educate NDIA staff and planners to recognise and apply the CRPD human rights model of disability and inclusive equality framework.

  6. Interpret the insurance approach of the NDIS6 in ways that are consistent with a human rights approach.

1 My supervisors are Dr Eddie Paterson, Professor Beth Gaze and Professor Bernadette McSherry. 2 National Disability Insurance Scheme Act 2013 (Cth) ss3(1)(a) and (e). 3 Committee on the Rights of Persons with Disabilities, General Comment No 6: Equality and Non-Discrimination, 19th Sess, UN Doc CRPD/C/GC/6 (26 April 2018, Adopted 9 March 2018) para 9. 4 Ibid para 11. 5 This recommendation reflects Article 4(3) of the Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNTS 3 (entered into force 3 May 2008). 6 National Disability Insurance Scheme Act 2013 (n 2) s 3(2)(b).

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  1. Conceptualise the insurance risk in terms of the liabilities attached to a non-inclusive society. An insurance approach that conceives of disability as risk perpetuates stigma and the medical model of disability.

Part 2 Specific Recommendations

  1. Counter an interpretation of the NDIS insurance approach that may unfairly deny disability supports to people. The NDIS has an actuarial focus on minimising future costs that has the potential to discriminate against some people with disabilities. For example, Operational Guideline 10.5 states in determining whether to fund a support, that the NDIA must consider “whether there is evidence that the support will substantially improve the life stage outcomes for, and be of long-term benefit to, the participant (rule 3.1(b) of the Supports for Participants Rules)”. Rules and principles such as these have been applied by the NDIA to deny disability supports to people with disabilities who have deteriorating or terminal conditions; or to people with psychosocial disabilities who experience fluctuating symptoms. Such provisions need to be amended in line with a human rights approach and to satisfy the NDIS Act objective of enabling choice and control in the planning of supports.

  2. Planners should take into account the participant’s lived experience, their social context and the effect of structural barriers (such as thin markets and inaccessible infrastructures). They should also reject the neoliberal presumption of the NDIS that all people with disabilities have the capacity to attract and manage services and to be productive. It appears that “Capability building” in the plans is based on a medical model idea that all a participant needs is better individual supports to participate in the community. Further, the plans draw an artificial link between the statements of supports and achievement of goals, and do not take into account the social barriers to participation.

  3. People with disabilities need to be involved in the design of plans so they are comprehensible.

  4. The statement of supports should be directed by the participant, not the planner.

  5. The participant is to be given a draft of the plan and allowed to comment. The current practice of withholding the draft is inconsistent with the human rights approach and the NDIS Act’s objective of choice and control. It is also a breach of procedural fairness, administratively poor practice and subject to costly reviews because it fails to ensure that errors are corrected before the plan comes into effect.

  6. A plan should allow variation rather than mandating a new plan, so that changes in a participant’s circumstances can be responded to without triggering an unnecessary and lengthy review.

A human rights approach will assist in the development of participant plans that provide choice and control, realistically respond to disadvantage, and achieve participation for people with disabilities on an equal basis. This is particularly important for persons facing an array of structural barriers who are currently being left behind by the NDIS. Reforms to the planning process should be guided by the human rights model of disability and the inclusive equality framework.

Yours faithfully, Micheline Lee

September 2019

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