Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026

EXPLANATORY STATEMENT

Issued by the authority of the Minister for Aged Care and Seniors

Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026

Purpose

The Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026 (the Instrument) amends the Aged Care Rules 2025 (the Rules) to ensure that individuals diagnosed with motor neurone disease are assigned an ‘urgent’ priority category for access to the Support at Home program.

The instrument achieves this by adding motor neurone disease as a specific criterion within assigning individuals with motor neuron disease 5 points, ensuring a classification of an ‘urgent’ priority category.

Outline

The Instrument amends section 87-5 of the Rules to include a new criterion recognising individuals who had motor neurone disease at the time of their most recent aged care needs assessment. Motor neurone disease is a rapidly progressing condition meaning that an individual’s support needs can change quickly.

The amendments:

• provide a new eligibility criterion that assigns individuals with motor neurone disease 5 points eligibility
• ensure these individuals are categorised as ‘urgent’ for access to ongoing home support services
• include transitional provisions to enable the amendments to apply retrospectively from 1 November 2025.

This ensures that affected individuals receive timely access to funding within the classification type ongoing for the service group home support.

Background

The Rules prescribe that the time within which places (funding) is allocated to individuals is in accordance with their priority category. The priority category is determined relative to the total eligibility score for the individual, worked out by summing the scores assigned to certain circumstances that may apply to the individual. These criteria, the assigned scores, and the related priority category are set out in the Rules.

Prior to this amendment, the eligibility criteria did not explicitly account for motor neurone disease. As a result, some individuals with motor neurone disease were assigned lower priority categories (such as ‘standard’ or ‘medium’) and experienced delays in accessing new or higher levels of funding.

Evidence indicated that:

• individuals with motor neurone disease were waiting inappropriate periods for funding
• a substantial cohort remained in the priority queue without an appropriate priority category.

The amendment responds to these issues by ensuring that all individuals with motor neurone disease are assigned an appropriate priority category in recognition of the progressive nature of the condition and the urgent need for support.

Authority

The Instrument is made under the Aged Care Act 2024, which provides the legislative authority to prescribe matters relating to aged care prioritisation and service access through subordinate legislation.

Consultation

The Department of Health, Disability and Ageing consulted with relevant Commonwealth agencies, including the Department of Finance and the Department of the Prime Minister and Cabinet, in developing the policy.

Retrospective effect

Although the Instrument commences on the day after registration, it includes provisions that provides that the amendment will apply retrospectively from 1 November 2025.

The retrospective application is necessary to ensure that individuals who were previously diagnosed with motor neurone disease when they were assessed prior to this Instrument receive the benefit of the amended prioritisation criterion.

The retrospective effect is beneficial to affected individuals, as it facilitates earlier access to funding and services.

Impact Analysis

A detailed impact analysis was not required for this Instrument.

General

This Instrument is a legislative Instrument for the purposes of the Legislation Act 2003. 

Details of this Instrument are set out in Attachment A. 

This Instrument is compatible with the human rights and freedoms recognised or declared under section 3 of the Human Rights (Parliamentary Scrutiny) Act 2011. A full statement of compatibility is set out in Attachment B. 

ATTACHMENT A

Explanation of the provisions

Section 1 – Name

This section provides that this Instrument is the Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026.

Section 2 – Commencement

This section provides that this Instrument commences the day after registration.

Subsection 2(2) explains that information in column 3 of the table is not part of this Instrument. Information may be inserted in this column, or information in it may be edited, in any published version of this Instrument.

Section 3 – Authority

This section provides that this Instrument is made under the Aged Care Act 2024.

Section 4 – Schedule

This section confirms that each Instrument that is specified in a Schedule to this Instrument is amended or repealed as per the Schedule. Any other item in a Schedule to this Instrument has effect according to its terms.

Schedule 1 – Amendments

Aged Care Rules 2025

Item 1 – Subsection 87‑5(2) (at the end of the table)

Item 1 adds Item 7 into the table in subsection 87-5(2) of the Rules.

New Item 7 in the table provides that an individual who had motor neurone disease at the time that the individual’s most recent aged care needs assessment was undertaken will be provided an additional 5 points towards their eligibility score used to determine their priority category for the classification type ongoing for the service group home support.

The priority category is determined by summing the scores for the eligibility circumstances that apply to the individual in the table in subsection 87-5(2), and comparing that total to the number required for each priority category (‘urgent’, ‘high’, ‘medium’ and ‘standard’)  in the table at subsection 87-5(1). The number of points required for a priority category of urgent is 5 or more. This will ensure individuals who had motor neurone disease at the time of their most recent aged care needs assessment will be assigned an ‘urgent’ priority category for ongoing home support. An ‘urgent’ priority will allow the individual to access services immediately.

Item 2 – At the end of the instrument

Item 2 adds ‘Chapter 15 – Transitional provisions, Part 1A—Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026, 610‑1A Priority categories and eligibility criteria for classification type ongoing for the service group home support’.

New section 610-1A provides that section 87‑5 of this Instrument, as amended by Item 1 of Schedule 1 of this Instrument, applies on or after 1 November 2025.

This provision provides retrospective application. Individuals who had their aged care needs assessment completed on or after 1 November 2025 and were diagnosed with motor neurone disease at that time will be assigned an ‘urgent’ priority category and be able to access services within four weeks or less, depending on when they received their original access approval.

ATTACHMENT B

Statement of Compatibility with Human Rights

Prepared in accordance with Part 3 of the Human Rights (Parliamentary Scrutiny) Act 2011

Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026

This Instrument is compatible with the human rights and freedoms recognised or declared in the international instruments listed in section 3 of the Human Rights (Parliamentary Scrutiny) Act 2011.

Overview of the Instrument

This Instrument amends the Aged Care Rules 2025 (the Rules) under the Aged Care Act 2024 (the Act) to address unintended consequences in the operation of the Support at Home prioritisation framework.

In particular, the Instrument:

• introduces motor neurone disease as a specified criterion within the Rules
• assigns individuals with motor neurone disease a score of 5 points, ensuring they are categorised as ‘urgent’
• enables retrospective application of this criterion to individuals who had motor neurone disease at the time of their most recent aged care needs assessment.

These amendments ensure that people with motor neurone disease receive timely access to aged care services commensurate with the progressive and life‑limiting nature of the condition.

Human rights implications

This Instrument engages the following rights:

Assessment of Compatibility

Right to an adequate standard of living

The right to an adequate standard of living, contained in article 11(1) of the ICESCR and article 28(1) of the CRPD, includes the right to adequate housing, food, water and continuous improvement of living conditions. It also requires States to ensure access to appropriate social protection and support services, particularly for persons with disabilities and older people.

The Instrument promotes this right by ensuring that individuals with motor neurone disease are prioritised for timely access to ongoing home support. By assigning an ‘urgent’ priority category, the Instrument reduces delays to access funded supports that assist with daily living activities, personal care, and maintaining independence at home. This is particularly important given the rapid progression of motor neurone disease and the significant impact it has on an individual’s ability to meet basic daily needs.

Right to health

The right to health, contained in article 12 of the ICESCR and article 25 of the CRPD, refers to the right of all individuals to the highest attainable standard of physical and mental health. It includes access to health and care systems that are available, accessible, acceptable and of appropriate quality.

The Instrument promotes the right to health by improving timely access to support services for individuals with motor neurone disease, which is a progressive and life-limiting condition requiring coordinated and responsive care. By ensuring these individuals receive an ‘urgent’ priority classification, the Instrument supports earlier access to services that maintain physical functioning, manage symptoms, and promote dignity and quality of life.

The retrospective application of the amendments further strengthens this right by ensuring that individuals previously assessed are not disadvantaged and can access care sooner than would otherwise occur.

Right to social security

The right to social security, as set out in article 9 of the ICESCR and article 28(2) of the CRPD, protects access to systems that provide support in circumstances such as illness, disability, or ageing. It is essential to ensuring human dignity and social inclusion.

The Instrument promotes this right by ensuring that individuals with motor neurone disease can more rapidly access government-funded aged care services under the Support at Home program. By adjusting the prioritisation framework, the Instrument improves the responsiveness and fairness of the system, ensuring that people with high and immediate needs are supported appropriately.

The retrospective element also enhances access to social security by enabling reconsideration of earlier decisions, ensuring that affected individuals benefit from the amended settings without needing to undergo unnecessary reassessment processes.

Right to the highest attainable standard of health

The right to the highest attainable standard of health is contained in article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR) and article 25 of the Convention on the Rights of Persons with Disabilities (CRPD). This right requires States to establish and maintain a system of health protection that provides accessible, available, acceptable and quality health and care services. It includes timely access to appropriate health care and support services without discrimination, particularly for persons with disability and those with progressive or life‑limiting conditions.

The Instrument promotes this right by ensuring that individuals with motor neurone disease are assigned an ‘urgent’ priority category for access to aged care services under the Support at Home program. Motor neurone disease is a rapidly progressive and life‑limiting condition that requires timely, coordinated and responsive care to maintain quality of life and manage complex health needs. By amending the prioritisation framework to automatically assign individuals with motor neurone disease a high priority score, the Instrument reduces delays in accessing essential in‑home supports, including personal care and assistance with daily functioning.

The retrospective application of the amendments further promotes this right by ensuring that individuals who were previously assessed are not disadvantaged and can access services earlier than they otherwise would have. Overall, the Instrument enhances timely and equitable access to care and support services, thereby promoting the highest attainable standard of health for individuals with motor neurone disease.

Right to equality and non-discrimination

The right to equality and non-discrimination is protected under article 2(2) of the ICESCR, articles 2, 16 and 26 of the ICCPR, and article 5 of the CRPD. These provisions require that all individuals are treated equally before the law and are not discriminated against on the basis of characteristics such as disability.

The Instrument promotes this right by addressing unintended consequences of the existing prioritisation algorithm, which did not adequately account for the needs of individuals with motor neurone disease. By explicitly recognising motor neurone disease as a condition warranting urgent priority, the Instrument ensures that individuals with this disability are not disadvantaged by a generalised assessment framework.

While the Instrument provides specific recognition to motor neurone disease, this differentiation is reasonable, necessary and proportionate, as it responds to the unique clinical trajectory and urgent care needs associated with the condition.

Rights of persons with disabilities

The CRPD affirms that persons with disabilities are entitled to the full and equal enjoyment of all human rights and fundamental freedoms, including access to health services (article 25) and equality and non-discrimination (article 5).

The Instrument promotes these rights by ensuring that the aged care system appropriately recognises and responds to the needs of individuals with motor neurone disease as a severe and progressive disability. The amendment improves access to timely, appropriate and responsive care, supporting independence, dignity and participation in the community.

It also reflects a person-centred approach by aligning service prioritisation with the actual needs and circumstances of individuals, rather than relying solely on generalised criteria.

Right to equal recognition before the law

Article 12(2) of the CRPD provides that persons with disabilities have the right to recognition everywhere as persons before the law and to enjoy legal capacity on an equal basis with others.

The Instrument promotes this right by supporting administrative processes that allow for reconsideration of earlier priority decisions where appropriate, including through retrospective application of the amended rules. This ensures that individuals with motor neurone disease are treated fairly and consistently within the legal framework and are able to benefit equally from legislative improvements.

Conclusion

The Aged Care Amendment (Motor Neurone Disease Priority) Rules 2026 is compatible with human rights.

The Instrument promotes the rights to an adequate standard of living, health, social security, equality and non-discrimination, and the rights of persons with disabilities by ensuring that individuals with motor neurone disease receive timely and appropriate access to aged care services.

To the extent that the Instrument differentiates between groups, this is reasonable, necessary and proportionate to address the urgent and specific needs of individuals with motor neurone disease and to correct unintended consequences in the operation of the prioritisation framework.

Sam Rae

Minister for Aged Care and Seniors