Enabling autonomy and access - Volume 6

Accessible information and communications

The DRC recommendation

The Australian Government and state and territory governments should develop and agree on an Associated Plan in connection with Australia’s Disability Strategy 2021–2031 to improve the accessibility of information and communications for people with disability. The Associated Plan should be co-designed with people with disability and their representative organisations. It should be finalised by the end of 2024. 

The Associated Plan should: 

• consolidate and build on existing initiatives and commitments by governments 
• recognise the diversity of people with disability and the many formats and languages that people may require information to be provided in 
• consider the roles of various stakeholders, including the Australian Government, state and territory governments, disability service providers, disability representative organisations and organisations representing people from culturally and linguistically diverse backgrounds 
• focus, in the first instance, on information and communications about preparing for and responding to emergencies and natural disasters, and public health 
• include targeted actions to ensure access to information and communications for people with disability in the criminal justice system; supported accommodation, including group homes; Australian Disability Enterprises; and day programs 
• identify and allocate appropriate funding and resources for delivery 
• include mechanisms for review and public reporting of progress made against the Associated Plan.

The DRC Recommendation

The Australian Government and state and territory governments, through the Disability Reform Ministerial Council, should commission the development of a workforce strategy to increase the number and quality of Auslan interpreters. 

The strategy should: 

• be based on a robust demand-supply analysis to quantify the current gaps and shortages in interpreting services. This includes analysis of qualifications, specialisations, geographic coverage, and the availability and use of face-to-face interpreting and Video Remote Interpreting 
• include costed initiatives to:
  • increase the number of Auslan interpreters, including the provision of scholarships and stable ongoing employment opportunities, particularly in under-serviced areas
  • support specialisations in health, legal and other critical sectors (including minimum qualifications)
  • provide ongoing professional development and industry standards to support a high-quality interpreter workforce
  • increase and retain Auslan interpreters who are First Nations or from culturally and linguistically diverse backgrounds
  • raise awareness and promote pathways to becoming an Auslan interpreter. 

The strategy should be developed by September 2024, and implementation of the strategy should begin by January 2025. 

The DRC recommendation

The Australian Government, the National Accreditation Authority for Translators and Interpreters (NAATI) and the National Disability Insurance Agency (NDIA) should take steps to ensure people with disability have access to appropriately skilled and qualified interpreters as needed. 

Training for interpreters

NAATI should require interpreters to complete training in disability awareness before receiving accreditation and as part of their ongoing professional development to maintain accreditation. 

Interpreters in disability service provision

The NDIA should: 

• ensure staff are aware of the NDIA’s Practice Guide on Accessible Communication and the provisions of the Practice Guide for Aboriginal and Torres Strait Islander planning support relating to interpreters and translation 
• provide training for staff on how to arrange and work with an interpreter. 

The Minister for the National Disability Insurance Scheme (NDIS), in consultation with states and territories, should: 

• amend the National Disability Insurance Scheme (Provider Registration and Practice Standards) Rules 2018 (Cth) to introduce a standard on effectively working with interpreters 
• amend the National Disability Insurance Scheme (Quality Indicators for NDIS Practice Standards) Guidelines 2018 (Cth) to include indicators relevant to the standard on working effectively with interpreters, including that providers have relevant policies and procedures in place. 

The NDIS Quality and Safeguards Commission should amend the NDIS Workforce Capability Framework to provide that the Communicate Effectively Core Capability for Advanced Support Work explicitly includes working with interpreters. 

Supported decision-making

The DRC recommendation

a) States and territories should amend their guardianship and administration legislation to: 

• include the terms ‘support order’, ‘support agreement’ and ‘supported persons’ 
• remove the terms ‘guardianship order’ and ‘administration order’ or ‘financial management order’, and replace these with ‘representative order’ 
• remove the terms ‘guardian’ and ‘administrator’ or ‘financial manager’, and replace these with ‘representative’ 
• remove the term ‘enduring guardian’ and replace this with ‘enduring representative’ 
• remove the terms ‘enduring guardianship’ and ‘enduring power of attorney’, and replace these with ‘enduring representation agreement’ 
• remove the terms ‘decision-making capacity’, ‘capacity’ and ‘mental incapacity’, and replace these with ‘decision-making ability’. 

b) The new and replacement terms should be defined consistently with the definitions provided in Table 6.2.11. 

c) States and territories should amend the title of their guardianship and administration legislation to refer to decision-making. For example, ‘Supported and represented decision-making Act’ or ‘Decision-making Act’. 

The DRC recommendation

States and territories should review and reform their guardianship and administration legislation to include a statement of statutory objects which: 

• recognises and promotes the rights of people with disability consistent with the Convention on the Rights of Persons with Disabilities (CRPD) 
• includes the text of article 12 of the CRPD 
• recognises the role of support to enable people who may require support to make, participate in and implement decisions that affect their lives. 

The DRC recommendation

a) States and territories which have not already done so should review and reform their guardianship and administration legislation to include the following supported decision-making principles. The legislation should oblige all persons exercising powers, carrying out functions or performing duties under the legislation to have regard to the principles. 

Principle 1 – Recognition of the equal right to make decisions 

All people have an equal right to make decisions that affect their lives and to have those decisions respected. 

Principle 2 – Presumption of decision-making ability 

All people must be presumed to be able to make decisions. 

Principle 3 – Respect for dignity and dignity of risk 

All people must be treated with dignity and respect and supported to take risks to enable them to live their lives the way they choose, including in their social and intimate relationships. 

Principle 4 – Recognition of informal supporters and advocates 

The role of informal supporters, support networks and advocates who provide support for decision-making should be acknowledged and respected. 

Principle 5 – Access to support 

People who may require supported decision-making should be provided with equitable access to appropriate support to enable the person, as far as practicable in the circumstances, to: 

• make and participate in decisions affecting them 
• communicate their will and preferences 
• develop their decision-making ability. 

Principle 6 – Decisions directed by will and preferences

The will and preferences of people who may require supported decision-making must direct decisions that affect their lives. 

Principle 7 – Inclusion of safeguards

There must be appropriate and effective safeguards where people may require supported decision-making, including to prevent abuse and undue influence.

Principle 8 – Co-designed processes

People with disability, in particular people with cognitive disability, their supporters and representative organisations, should be involved in the development and delivery of policies and practices on supported decision-making.

Principle 9 – Recognition of diversity

The diverse experiences, identities and needs of people who may require supported decision-making must be actively considered.

Principle 10 – Cultural safety

First Nations people and cultural and linguistically diverse people with disability are entitled to supported decision-making that is culturally safe, sensitive and responsive. This includes recognising the importance of maintaining a person’s cultural and linguistic environment and set of values.

b) The Australian Government and state and territory governments should also take steps to review and reform other laws concerning individual decision-making to give legislative effect to the supported decision-making principles.

Why we want this recommendation to go further

The Principles should also include specific recognition of support for communication needs.

The DRC recommendation

States and territories should review and reform their guardianship and administration legislation to: 

• ensure consistency with Principle 2 in Recommendation 6.6 that all people should be presumed to be able to make decisions 
• provide that this presumption cannot be rebutted solely on the basis that a person has a disability 
• require that anyone responsible for deciding whether the presumption has been rebutted that a person has decision-making ability for the relevant decision, must consider: 
  • the supports available to the person, including the quality of existing support relationships 
  • that decision-making ability is specific to the decision being made 
  • the nature and complexity of the specific decision to be made 
  • the views of the person and, with their consent, the views of family and informal supporters who have significant involvement in the person’s life. 

The DRC recommendation

States and territories should introduce into guardianship and administration legislation provisions to enable statutory and personal appointments of one or more supporters for personal and financial matters, following the approach taken by Victoria in Part 4 of the Guardianship and Administration Act 2019 (Vic) and Part 7 of the Powers of Attorney Act 2014 (Vic). This includes provisions on: 

• appointment of supporters 
• role, powers and duties of supporters 
• safeguards in relation to supports 
• review and revocation of support agreements and orders. 

The DRC recommendation

States and territories should review and reform their guardianship and administration legislation to provide that representation orders should be made only as a last resort and in a way that is least restrictive of a person’s rights, autonomy and actions, as practicable in the circumstances. The reforms should include: 

a) the repeal of provisions authorising plenary representation orders 

b) a requirement that the relevant tribunal should make an order appointing a representative only if satisfied that: 

• the proposed represented person does not have decision-making ability for one or more decisions 
• the order is necessary, taking into account: 
  • the will and preferences of the proposed represented person 
  • the availability and suitability of less intrusive and restrictive measures, including formal and informal support arrangements, negotiation and meditation 
• the order will promote the person’s personal and social wellbeing 

c) a provision that the tribunal must take into account, in deciding whether a person (other than a public official) is suitable for appointment as a representative: 

• the will and preferences of the proposed represented person 
• the nature of the relationship between the proposed representative and the proposed represented person 
• whether the proposed representative is likely to act honestly, diligently and in good faith 
• whether the proposed representative has or may have a conflict of interest in relation to any of the decisions referred to in the order 

d) a prohibition on a representation order made in the absence of the proposed represented person, unless the tribunal is satisfied that either: 

• the represented person does not wish to attend the hearing in person 
• the personal attendance of the represented person at the hearing is impracticable or cannot reasonably be arranged 

e) a requirement that when considering whether a support or representation order should be made for a First Nations person, the tribunal should take into account: 

• the likely impact of the order on the person’s culture, values, beliefs (including religious beliefs) and linguistic environment 
• the likely impact of the order on the person’s standing or reputation in their community 
• any other considerations pertaining to the person’s culture 

f) provisions on the review and revocation of representation orders, including that: 

• a representation order lapses on the expiration of three years after the date on which it is made, unless the tribunal has specified an expiry date (earlier than three years) in the order or the order is renewed 
• a tribunal must conduct a review of representation order at least once within each three-year period after making the order 
• when reviewing an order, the tribunal should consider: 
  • whether the order is still necessary, considering the factors listed in b) 
  • whether the representative is still eligible and suitable 
  • whether the representative is meeting their responsibilities and carrying out their required functions.

Why we want this recommendation revised

We believe the provisions for representatives of last resort should be based on a clear presumption of such orders being temporary and require that proactive supports are provided to ensure a transition to supported decision-making can be achieved as soon as possible. We believe all orders should be reviewed every six months rather than three years.   

Additionally, the implementation of this recommendation should be subject to a national, independent, comprehensive, and timely review to ensure it is not creating a loophole to avoid supported decision-making approaches, or resulting in regression to substitute decision-making models.

The DRC recommendation

States and territories should review and reform their guardianship and administration legislation to include a decision-making process that appointed supporters and representatives are required to follow. 

The decision-making process for both supporters and representatives should involve: 

• supporting the person to express their will and preferences 
• assisting the person to develop their own decision-making ability. 

The decision-making process for representatives should also include the following steps and considerations: 

• the person’s will and preferences must be given effect 
• where the person’s current will and preference cannot be determined, the representative must give effect to what they believe the person’s will and preferences are likely to be, based on all the information available 
• if it is not possible to determine what the person would likely want, the representative must act to promote and uphold the person’s personal and social wellbeing with the least possible restriction on their dignity and autonomy 
• a representative may override the person’s will and preferences only where necessary to prevent serious harm. In these circumstances, the representative must act to promote and uphold the person’s personal and social wellbeing with the least possible restriction on their dignity and autonomy.

Why we are concerned about this recommendation

We believe an additional step should be added after the first step in the second part of this recommendation to require that alternative methods of determining a persons’ current will and preference be exhausted. 

We are also concerned the final two dot points create opportunities to revert to substitute decision-making approaches and believe this requires stronger prevention provisions. The threshold of determining serious harm needs to be clear to avoid varied interpretations and should not relate to the ordinary risks of ordinary life where planning and safeguards would be more appropriate responses than overriding choices. A possible approach is that the supporter or representative is required to document the steps taken and provide these during reviews of arrangements. Further, relevant tribunals could be enabled to refer a supporter or representative for additional training about implementing supported decision-making approaches or to appoint a replacement supporter or representative based on this information as appropriate.

The DRC recommendation

a) The Australian Guardianship and Administration Council should update the Guidelines for Australian Tribunals: Maximising the participation of the Person in guardianship proceedings to align with our recommendations on guardianship and supported decision-making (see in particular Recommendations 6.4–6.10 and 6.19).

b) The guardianship division or list in each state and territory tribunal should consider adopting, through practice directions or other appropriate means, the updated Guidelines for Australian Tribunals: Maximising the participation of the Person in guardianship proceedings.

The DRC recommendation

States and territories should amend their guardianship and administration laws or tribunals acts, to: 

• repeal provisions prohibiting publication of material identifying a party to the proceedings as the default position
• empower the tribunal to make an order prohibiting publication of material identifying the party to the proceedings, if the circumstances justify such an order, taking into account the will and preferences of that party.

The DRC recommendation

a) States and territories should ensure that, where legislation to this effect is not already in place, the functions of public advocates and public guardians include providing information, education and training on supported decision-making to people requiring supported decision-making and their families, private supporters and representatives (present or prospective), disability service providers, public agencies, the judiciary, tribunal members and legal representatives.

b) States and territories should ensure that, where legislation to this effect is not already in place, public advocates and public guardians are empowered to provide advice and assistance to people who may require decision-making support, including in relation to applications for support and representation orders.

Why we think this recommendation should be revised

We believe these functions should sit with the statutory body relevant to Recommendation 6.14 and this should not be a public advocate or public guardian given their long association with substitute decision-making approaches.

The DRC recommendation

States and territories should ensure that, where this is not already the case, a statutory body has a function to undertake systemic advocacy to promote supported decision-making. This function should include: 

• monitoring, investigating, researching, reporting, making recommendations and advising on any aspect of relevant decision-making legislation
• encouraging the development and improvement of programs, services and facilities that promote the autonomy of people with disability
• supporting organisations that undertake advocacy and education on supported decision-making.

Why we want this recommendation to go further

We believe public advocates and public guardians should be precluded from this function due to their long association with substitute decision making and the associated distrust in the disability community, as well as their need to be one of the agencies targeted for training and capacity building to implement supported decision-making approaches. We suggest a new agency, such as a state disability commission, be considered for this important function.

The DRC recommendation

Public advocates, public guardians and public trustees, through the Australian Guardianship and Administration Council, should update the National Standards of Public Guardianship and National Standards for Financial Managers to: 

• include the supported decision-making principles 
• align with reforms to state and territory guardianship and administration legislation that give effect to Recommendations 6.4–6.10 
• amend the relevant standards to provide that public officials acting as representatives should have frequent meetings and ongoing, accessible communication with the represented person to get to know the person and develop a trusted relationship. Meetings should take place in line with a represented person’s preferences as to format and attendees, wherever practicable 
• amend the relevant standards to recognise the importance of ensuring all engagement with First Nations and culturally and linguistically diverse people is culturally safe and responsive and that appropriate training for staff is provided to enable them to do so 
• amend the relevant standards to recognise the importance of public officials acting as representatives facilitating connections between a represented person and advocates and informal supporters.  

The DRC recommendation

a) All public trustees should offer a financial skills development program to people under a representation order appointing the public trustee as a representative. The program should promote financial independence and: 

• be developed in partnership with representative organisations of people with disability, including organisations representing people with intellectual disability, and financial counselling community support organisations 
• incorporate broad eligibility criteria 
• be actively promoted, especially among people entering administration. 

b) Upon successful completion of the program, public trustees should support a person to apply for a review of their order. If a person is not eligible for the program, the public trustee must advise them of their right to apply to the relevant tribunal for review of their order.

c) Public trustees should report annually on the number of people who have participated in the program, the number who have completed it and the number who have subsequently transitioned out of administration arrangements.

Why we think this recommendation should be revised

We believe the financial skills development program should be offered by the statutory body relevant to Recommendation 6.14 and this should not be a public trustee given their long association with substitute decision-making approaches and the deep distrust of public trustees within the community.

The DRC recommendation

Public trustees in each state and territory should: 

• publish accessible information about the services they provide to people under administration orders, the fees and charges applicable for those services and the ways in which fees are calculated for each individual
• on appointment, annually and following any significant change to a person’s circumstances, send to people under administration orders individualised and accessible information detailing the services they will receive and the fees for those services.

Why we want this recommendation to go further

There should be a statutory body with an increased oversight function regarding public trustees including in relation to fees and charges.

The DRC recommendation

State and territory governments should ensure that public trustees’ fees and charges have been independently reviewed since 2019. Where such a review has not been conducted since this time, state and territory governments should arrange a comprehensive review of the fees and charges payable by people under administration orders to the public trustee in their jurisdiction. The reviews should make recommendations to ensure fees and charges are fair and equitable for all people under administration orders.

Why we want this recommendation to go further

Per our comment at recommendation 6.17, there should be a statutory body with an increased oversight function regarding public trustees including in relation to fees and charges. Reviews of fees and charges should occur annually.

The DRC recommendation

The Australian Government and states and territories should develop and implement a national approach to collecting and publishing de-identified data on support and representation arrangements, led by the Australian Institute of Health and Welfare. 

The national approach should consistently use definitions of ‘disability’, ‘representation’ and ‘support’ arrangements proposed in this Final report, and should employ methodologies which enable reporting on comparisons across jurisdictions and trends over time. 

The national approach should include collection and publication of data on: 

• numbers of formally appointed representatives and supporters, disaggregated appropriately 
• the extent to which people with disability who are the subject of the proceedings participate in the proceedings and the manner in which they participate (for example, in person or via alternative technological means) 
• numbers of representative agreements commenced, terminated, revoked, varied or reviewed 
• the extent to which people with disability who are the subject of the proceedings are legally represented. 

The data should identify, to the greatest extent practicable, types of impairment, age, First Nations people with disability, culturally and linguistically diverse people with disability, LGBTIQA+ people with disability, women with disability and National Disability Insurance Scheme participants.

The DRC recommendation

Commissioners Bennett, Galbally, Mason and McEwin recommend the Australian Government withdraw its interpretative declaration in relation to article 12 of the Convention on the Rights of Persons with Disabilities.

Advocacy services

The DRC recommendation

a) For the financial years 2024–25 and 2025–26, the Australian Government should commit additional funding of: 

• $16.6 million per annum for the National Disability Advocacy Program 
• $20.3 million per annum for the National Disability Insurance Scheme Appeals Program. 

These amounts should be indexed to maintain their value in real terms from year to year. 

b) From 1 July 2026, the Australian Government should ensure long-term and stable funding for national disability advocacy programs to meet demand. This should be informed by improved data in line with Recommendation 6.22. 

c) From at least 1 July 2026, state and territory governments should ensure long-term and stable funding for disability advocacy programs in their jurisdictions to meet demand. This should be informed by improved data in line with Recommendation 6.22.

Why we strongly support and want this recommendation to go further with a faster timeline

We strongly believe additional independent advocacy funding is needed now and cannot wait until 1 July 2026, per parts (b) and (c) of this recommendation. Long-term and stable funding should be provided as a matter of urgency and no later than the 2024 calendar year. Additionally, this funding should extend to ensuring independent advocacy is available in regional, rural, and remote areas to meet need.

The DRC recommendation

The Australian Government and state and territory governments should improve data collection and reporting on met and unmet demand for disability advocacy within their jurisdiction. 

At a minimum, this data should: 

• be collected and published on an annual basis 
• include demographic indicators that show geographic location, First Nations and culturally and linguistically diverse status 
• identify, where possible, whether a request for disability advocacy is from or concerns a person with disability who lives in supported accommodation or is in prison or juvenile detention. 

This data should be collected and reported on an ongoing basis. 

The Australian Government and state and territory governments should include data collection and reporting as a priority work area in the Disability Advocacy Work Plan associated with the 2023–2025 National Disability Advocacy Framework, and progress this as part of future National Disability Advocacy Frameworks or equivalents. 

The Australian Government and state and territory governments should work together to ensure consistent definitions and methodologies allowing comparisons across jurisdictions and trends over time. 

Publication of the data should commence no later than 1 July 2026.

Why we strongly support with faster timeline

We believe publication of data should commence as soon as possible.

The DRC recommendation

The Disability Advocacy Work Plan associated with the 2023–2025 National Disability Advocacy Framework should be amended to include priority work areas on increasing culturally appropriate and accessible advocacy services for people with disability from culturally and linguistically diverse backgrounds and LGBTIQA+ people with disability. Efforts under these priority work areas, and the priority work area on increasing culturally appropriate and accessible advocacy services for First Nations people with disability, should include training led by First Nations, culturally and linguistically diverse and LGBTIQA+ people with disability and their representative organisations.

This work should be progressed as part of future National Disability Advocacy Frameworks or equivalents.

Health

The DRC recommendation

The Australian Government Department of Health and Aged Care should: 

• expand the role of the Intellectual Disability Education and Training Expert Advisory Group to develop an implementation plan for the cognitive disability health capability framework, including key steps for embedding the capabilities from the framework in curricula in education and training programs for health practitioners across all training stages 
• develop a monitoring and evaluation framework to coordinate and measure delivery of the expanded capability framework and its implementation.

The DRC recommendation

The Australian Government Department of Health and Aged Care should: 

• immediately expand the scope of the work on an intellectual disability health capability framework and associated resources to address all forms of cognitive disability, to apply at all stages of education and training. This expansion should include autism-specific content, and address specific healthcare issues for people with learning disability, dementia and acquired brain injury. 
• allocate additional funding to support the expanded scope of health workforce capability development.

The DRC recommendation

The Health Ministers Meeting should expand its role in monitoring progress of the intellectual disability health capability framework to encompass the expanded capability framework proposed in Recommendation 6.25. This should include annual reporting to the Health Ministers Meeting on the progress of actions.

The DRC recommendation

Accreditation authorities for registered health professions and the peak professional bodies for non-registered health professions should:

a) review and amend accreditation standards and evidence requirements where necessary to address whether cognitive disability health is sufficiently covered. If it is not, they should amend their accreditation standards or evidence requirements (as the case may be) accordingly

b) encourage or mandate education providers to develop specific cognitive disability health curriculum content and deliver such content using inclusive teaching practices, involving people with cognitive disability where possible

c) report annually to the Australian Government Department of Health and Aged Care on their progress in implementing this recommendation. Where accreditation authorities have only recently undertaken their five-yearly review, annual reporting should include progress on implementation planning to address this recommendation pending the next scheduled review.

The DRC recommendation

The Australian Government Department of Health and Aged Care should include improved access to clinical placements in disability health services as an immediate priority, including by:

• exploring increased opportunities for student learning and development in cognitive disability health, including as part of interprofessional teams, with education providers and clinical placement providers.
• considering mechanisms to enhance funded supervised clinical and work-based training placements to train students in providing quality health care to people with cognitive disability. This should include enhanced financial support for clinical placement and supervision in community settings.

The DRC recommendation

a) The Royal Australasian College of Physicians, Royal Australian and New Zealand College of Psychiatrists, Australian and New Zealand College of Anaesthetists, Royal Australian College of General Practitioners, Australasian College of Emergency Medicine and Australian College of Rural and Remote Medicine should each:

• develop specialised training content in cognitive disability health for different areas of specialisation, building on the capability framework and the core set of learning resources, so that future specialists can develop skills and competencies in cognitive disability health
• expand and promote pathways for sub-speciality training in cognitive disability health.

b) These groups, as well as the Australian Dental Association and professional bodies responsible for continuing professional development (CPD) in the nursing and allied health professions should each:

• review CPD programs in their respective health discipline or specialty to determine whether CPD for the provision of health care to people with cognitive disability, including intellectual and/or developmental disabilities, should be enhanced
• promote the development of CPD opportunities on the provision of health care to people with cognitive disability, including intellectual and/or developmental disabilities
• raise awareness of such CPD opportunities among members.

c) The Australian Government Department of Health and Aged Care should reprioritise the National Roadmap for Improving the Health of People with Intellectual Disability action to embed training and CPD within all specialist training programs from a medium-term action (four to six years), to a short-term action (one to three years).

The DRC recommendation

The Australian Government Department of Health and Aged Care should expand the remit of the National Centre of Excellence in Intellectual Disability Health to include autism and other forms of cognitive impairment.

Why we think this recommendation should be revised

Autism health should not be included, rather the remit should recognise the intersectionality of autism and intellectual disability. The focus of this Centre should be on intellectual disability health. Other responses should focus on the important but different health implications associated with autism.

At a minimum, if the Centre is to include autism within its remit, it should be renamed accordingly to avoid the inaccurate conflation of autism and intellectual disability.

Moreover, there should be reforms and investments to make health systems fully accessible and inclusive of everyone for the benefit of all Australians.

The DRC recommendation

a) The Australian Commission on Safety and Quality in Health Care should:

• amend the Australian Charter of Healthcare Rights to incorporate the right to equitable access to health services for people with disability and align with the scope of this proposed right in the Disability Rights Act recommended in Volume 4, Realising the human rights of people with disability
• review and revise the National Safety and Quality Health Service Standards and the National Safety and Quality Primary and Community Healthcare Standards to provide for the delivery of safe and high-quality health care for people with disability and align with the scope of the proposed right to equitable access to health services in the Disability Rights Act recommended in Volume 4
• as part of this review, consider how the national standards support equal access to health services for people with disability throughout life, including (but not limited to) prevention and health promotion, diagnosis and early intervention and rehabilitation services.

b) The Australian Government Department of Health and Aged Care and state and territory counterparts should review all policies and protocols to ensure people with disability are permitted to be accompanied by a support person in any health setting. This should apply at all times, including when in-person healthcare restrictions are in place, such as during COVID-19.

The DRC recommendation

The Australian Government and state and territory governments, in consultation with people with disability, should:

a) identify and publish a list of frequently needed adaptations and supports (including communication supports) to enable people with disability to receive high-quality health care in all publicly funded settings. Adaptations and supports may need to be tailored to individual needs and additional supports may be required. These should include:

• environmental modifications and aids to reduce sensory loads, such as dimmer lighting, reduced background noise and noise-cancelling headphones
• preparatory action to familiarise the person with disability with clinical environments, such as hospital tours and animated videos
• different modes of service delivery, such as home visits, and taking a forward-looking approach to minimise distress associated with certain procedures – for instance, taking extra blood to reduce the need for additional blood draws, or undertaking multiple procedures at once if sedation is required to decrease the number of hospital visits
• novel and flexible approaches to pre-medication, including sedation, to reduce distress and anxiety before critical medical procedures.

b) review hospital (admitted and non-admitted care) and primary health care funding models to ensure these adaptations and supports can be implemented in all relevant settings.

c) disseminate information about the provision of adaptations and supports in a range of accessible formats.

The DRC recommendation

State and territory governments should establish and fund specialised health and mental health services for people with cognitive disability to provide:

• specialist assessment and clinical services, including preventive medicine, for people with cognitive disability and complex or chronic health and mental health needs
• training and support for health providers to build their capacity to provide safe, high-quality health care to people with cognitive disability.

These services should be delivered through a model that includes:

• specialist roles and multi-disciplinary teams embedded in local health service delivery
• statewide specialised services that can be accessed by people with cognitive disability and health professionals regardless of their location
• participation in a national network of specialised disability health and mental health services
• evaluation of the impact of specialised services and publication of evaluation findings.

Planning to implement specialised services in each jurisdiction should begin as soon as practicable and take into account existing services and needs in each jurisdiction. These changes should be introduced by September 2026.

The DRC recommendation

Through the Health Ministers Meeting, the Australian Government and state and territory governments should:

a) jointly fund a national workforce of ‘disability health navigators’ to support people with cognitive disability and complex health needs access health services and to embed safe, accessible and inclusive practice in everyday health service provision

b) develop a national evaluation framework to assess the impact of disability health navigators and share lessons learned across jurisdictions. Evaluation findings should be published.

Restrictive practices

The DRC recommendation

a) States and territories should ensure appropriate legal frameworks are in place in disability, health, education and justice settings, which provide that a person with disability should not be subjected to restrictive practices, except in accordance with procedures for authorisation, review and oversight established by law.

b) The legal frameworks should incorporate the following requirements, appropriately adapted to sector-specific contexts:

• Restrictive practices should only be used:
  • as a last resort, in response to a serious risk of harm to a person with disability or others, and only after other strategies, including supported decision-making, have been explored and applied
  • as the least restrictive response possible to ensure the safety of the person with disability or others
  • to the extent necessary to reduce the risk of harm and proportionate to the potential negative consequences from the use of restrictive practices
  • for the shortest time possible.
• Decisions to authorise restrictive practices should be subject to independent review.
• The use of restrictive practices should be subject to independent oversight and monitoring.

c) The legal frameworks should set out the powers and functions of a Senior Practitioner for restrictive practices in disability service provision (or equivalent authority). These powers and functions should include:

• promoting the reduction and elimination of the use of restrictive practices
• protecting and promoting the rights of people with disability subjected to restrictive practices
• developing and providing information, education and advice on restrictive practices to people with disability, their families and supporters, and the broader community
• considering applications to use restrictive practices in disability service settings and authorising their use according to procedures consistent with the Draft Principles for Consistent Authorisation
• developing guidelines and standards, and providing expert advice, on restrictive practices and behaviour support planning
• receiving complaints about the use of restrictive practices and the quality of behaviour support planning
• investigating the use of restrictive practices and the quality of behaviour support planning, either in response to complaints or of its own motion
• acting in response to complaints and investigations where appropriate.

Why we think this recommendation should go further

Authorisation of restrictive practices should only occur when accompanied by the provision of Positive Behaviour Support services for a person to proactively reduce and ultimately eliminate any need for restrictive practices. Addressing the underlying causes of behaviours at issue must be a central focus to avoid the use of restrictive practices. Legal frameworks regarding restrictive practices should set a deadline for their elimination within the term of Australia’s Disability Strategy 2021-2031. This should apply to all settings where restrictive practices are being used including, but not limited to, disability, health, mental health, education, and youth justice settings.

The DRC recommendation

State and territory governments should immediately:

• Adopt the list of prohibited forms of restrictive practices agreed by the former Disability Reform Council in 2019 and provide that the use of seclusion on children and young people is not permitted in disability service settings.
• Provide that the following are not permitted in health and mental health settings:
  • using seclusion and restraint as a means to reduce behaviours not associated with immediate risk of harm
  • using seclusion and restraint as a form of discipline, punishment or threat
  • restrictive practices that involve or include deliberate infliction of pain to secure compliance
  • using prone or supine holds, using any restraint intended to restrict or affect respiratory or digestive function, or forcing a person’s head down to their chest
  • secluding a person who is also mechanically restrained
  • secluding a person who is actively self-harming or suicidal
  • using metal handcuffs or hard manacles as a form of mechanical restraint (unless under police or other custodial supervision while in the health facility)
  • vest restraints for older people
  • neck holds
  • drugs, or higher doses of drugs, that create continuous sedation to manage behaviour
  • seclusion of children and young people. 
• Provide that the following are not permitted in education settings:
  • the use of restrictive practices:
    • as a form of discipline, punishment or threat
    • as a means of coercion or retaliation
    • in response to property destruction
    • for reasons of convenience
  • life threatening physical restraints, including physical restraints that restrict a student’s breathing or harm the student by:
    • covering the student’s mouth or nose, or in any way restricting breathing
    • taking the student to the ground into the prone or supine position
    • causing hyperextension or hyperflexion of joints
    • applying pressure to the neck, back, chest or joints
    • deliberately applying pain to gain compliance
    • causing the student to fall
    • having a person sit or kneel on the student
  • chemical restraints
  • mechanical restraints
  • clinical holding:
    • as a behaviour support strategy
    • to enforce the compliance of a student in undertaking personal care that is non-urgent and does not present a risk to the student
    • to punish a student
  • denial of key needs, such as food and water.

Why we think this recommendation should go further

These prohibitions should be accompanied by clear enforceable penalties for breaches by both individuals and entities.

The DRC recommendation

The NDIS Quality and Safeguards Commission, the Australian Commission on Safety and Quality in Health Care and the Aged Care Quality and Safety Commission should:

• publish joint annual progress reports on implementation of measures under the Joint statement on the inappropriate use of psychotropic medicines to manage the behaviours of people with disability and older people
• commission an independent evaluation of these measures to determine whether they have resulted in a reduction in the use of psychotropic medicines against people with cognitive disability. The evaluation should be co-designed with people with cognitive disability and their representative organisations and its results should be publicly reported.

The DRC recommendation

The National Disability Research Partnership should commission a longitudinal study of the impact of positive behaviour support and other strategies to reduce and eliminate restrictive practices. This study should:

• be co-designed with people with disability and relevant experts and professionals from the disability, health, education and justice sectors, to ensure the findings are relevant across a range of settings
• include the experiences and identify the intersecting needs of a broad range of people with disability, such as First Nations people with disability, LGBTIQA+ people with disability, and culturally and linguistically diverse people with disability.

Upon completion, the findings of the study should be made publicly available. Interim findings should be published at regular intervals.

The DRC recommendation

The Australian Institute of Health and Welfare should work with state and territory governments to develop consistent data definitions and collection methods on restrictive practices across all jurisdictions, and align reporting periods. These definitions and collection methods should be finalised by the end of 2024.

Using consistent definitions and collection methods, state and territory governments should collect and publish data on the use of restrictive practices in health, education and justice settings. This data should be collected and published on an annual basis, with publication commencing by the end of 2025 at the latest. Data should identify, to the greatest extent practicable:

• restraint type, including chemical, physical, mechanical, environmental and seclusion
• disability status
• types of impairment
• age
• gender
• First Nations people
• culturally and linguistically diverse people
• people who identify as LGBTIQA+.

Why we want this recommendation to go further

We believe publication of data should commence as soon as possible.

The DRC recommendation

The Australian Government and state and territory governments should establish sector-specific targets and performance indicators to drive the reduction and elimination of restrictive practices over time. This should be at both the national and state and territory levels for disability, health, education and justice settings. These targets and performance indicators should be established by 1 July 2025 at the latest.

Why we want this recommendation to go further

We believe the use of restrictive practices should be eliminated within the term of Australia’s Disability Strategy 2021-2031 and should be made unlawful from 2032. To be clear, we do not believe genuine sensible safety practices constitute restrictive practices and, as such, do not include these in this prohibition. In fact, we believe this demarcation is a critical element of removing the excuse of safety from the debate about restrictive practices.

The DRC recommendation

a) All jurisdictions should amend or enact legislation prohibiting non-therapeutic procedures resulting in permanent sterilisation of people with disability, except where:

• there is a threat to the life of the person with disability were the procedure not performed or
• the person with disability is an adult and has given voluntary and informed consent to the procedure, with support for decision-making if required.

b) All jurisdictions should amend or enact legislation in accordance with paragraph a) by the end of 2024.

c) The Australian Guardianship and Administrative Council (AGAC) should expand its annual collation and publication of data on the sterilisation of people with disability. This data should include the number of applications, reasons for applications, reasons for the outcomes of applications and the number of approvals to conduct a sterilisation procedure.

Where this does not already occur, the data should be collected and provided to AGAC annually by:

• the Federal Circuit and Family Court of Australia
• state and territory superior courts
• state and territory guardianship and administration bodies.

The data should be de-identified, as appropriate. It should be disaggregated, to the greatest extent possible, by:

• disability status
• types of impairment
• age
• gender
• First Nations people
• culturally and linguistically diverse people
• people who identify as LGBTIQA+.

d) A review of legislation enacted or amended according to paragraph a) of this recommendation should be conducted every five years, in light of the data published according to paragraph c). This review should aim to strengthen protections for people with disability and avoid consequences which hamper reproductive autonomy.