People Living with Dementia and the Royal Commission into Violence, Abuse, Neglect and Exploitation

The Disability Royal Commission was established in April 2019 in response to community concern about reports of violence against, and neglect, abuse and exploitation of, people with disability.

Violence, abuse, neglect and exploitation are key terms defined by the Disability Royal Commission to include illegal physical assault and sexual assault, failures in care, and restrictive practices.

The Disability Royal Commission is investigating ways to:

• Better prevent and protect people with disability from violence, abuse, neglect and exploitation

• Achieve best practice in reporting, investigating and responding to violence, abuse, neglect and exploitation

• Promote a more inclusive society that supports people with disability to be independent and live free from violence, abuse, neglect and exploitation.

These investigations are considering a range of settings and contexts including schools, workplaces, hospital and health facilities, group homes, family homes, community facilities and prisons.

The Disability Royal Commission is taking a human rights approach and is informed by the rights recognised by the United Nations Convention on the Rights of Persons with Disabilities.

The Disability Royal Commission will deliver a final report to the Australian Government in September 2023 with recommendations for improving laws, policies, structures and practices to ensure a more inclusive and just society.

How Dementia Justice is Informing the Royal Commission

The Disability Royal Commission is relevant to people living with dementia because dementia is a disability. The World Health Organisation has stated for over a decade

Dementia is ... one of the major causes of disability and dependency among older people globally.

People living with dementia experience many of the forms of violence, abuse, neglect and exploitation that have been the focus of the Disability Royal Commission’s work, including use of restrictive practices and violence in segregated and institutional settings (notably residential aged care facilities and older person’s mental health facilities).

Dr Linda Steele and Kate Swaffer from our research team made a submission to the Disability Royal Commission based on the findings of the Safe and Just Futures Project.

Submission to the Disability Royal Commission.pdf

Download PDF • 13.30MB

They are also drafting another submission based on the results of the Dementia Redress Project informed by focus groups with people living with dementia, their care partners, family members and close friends.

Our newest project partner, Interrelate, provides counsellors at the Dementia Redress Project focus groups. Interrelate is also providing free, independent, and confidential counselling services to support people affected by the Disability Royal Commission.

Another project partner, People with Disability Australia (PWDA), has made numerous submissions to the Disability Royal Commission and supports the Disabled People’s Organisations Australia campaign to #EndSegregation. PWDA are also providing support to people wanting to make submissions to the Disability Royal Commission.

Share your Story

The Commission is seeking personal experiences of:

• People with disability

• Family and carers who support people with disability

• The wider community including health care professionals, educators, and others who provide services to people with disability.

You can share your personal experience by making a submission (either online, in writing, via telephone email, or video or audio recording) and choose whether you want your submission to be made public or kept confidential. The final date for submissions is 31 December 2022.

Alternatively, you can share your story in a confidential, private session with a Commissioner (either in person, via video or telephone call). Registrations for private sessions close on 30 June 2022.

Support to Share Your Story

There are numerous organisations that will support you to share your story with the Disability Royal Commission, including our project partners: People with Disability Australia, and Interrelate.

Your Story Disability Legal Support can provide legal support to people involved with the Disability Royal Commission. Your Story empowers people with disability to safely share their story with the Royal Commission and connect with local support services. The service delivers a person centred, trauma-informed and culturally-safe legal service.

More information

• Watch a video about the Disability Royal Commission (also available with Auslan)

• Download a brochure (also available in easy read and other languages)

• Download the Terms of Reference for the Disability Royal Commission.

Human Rights for People Living with Dementia

Human Rights Day is held annually on 10 December - the day the United Nations General Assembly adopted, in 1948, the Universal Declaration of Human Rights. This year’s theme is “Equality - Reducing inequalities, advancing human rights.”

People living with dementia should be able to exercise their human rights and fundamental freedoms in all aspects of their daily lives. And yet, people with dementia are frequently denied their human rights both in the community and in residential aged care.

People living with dementia have the right to be free from violence, abuse and neglect in aged care. However, if this does occur, it is a human right for them to access redress (a way of righting those wrongs).

The human right to equal access to justice means people living with dementia should have the same access to redress as other groups in society. Unfortunately, even after a Royal Commission into aged care, we still do not have a redress scheme for people who experience violence, abuse and neglect in aged care.

So people living with dementia are at an even greater disadvantage than other groups who can access redress for institutional violence, such as people who experienced sexual abuse in child welfare institutions.

The Dementia Redress Project

The Dementia Redress project explores the need for redress of violence, abuse and neglect of people living with dementia in residential aged care. This website, Dementia Justice, was recently launched as part of the project to increase awareness and enable greater participation of people living with dementia and their care partners and family.

The Dementia Redress project was founded on the perspectives and lived experiences of the dementia community in collaboration with Dementia Alliance International and People with Disability Australia.

The Research Team is led by Dr Linda Steele, a socio-legal researcher at the University of Technology Sydney and Kate Swaffer, an independent researcher and award-winning international dementia and disability rights campaigner.

‘We want to find out what it means to the dementia community to redress, or set right, the wrongs of past violence, neglect and abuse in aged care,’ said Dr Steele. ‘We also want to explore best practice for an inclusive and accessible redress scheme, including how the legal profession could work with the community in a redress scheme.’

As part of the project, people living with dementia, care partners and family members of people with dementia who have been abused or neglected in aged care, and dementia and disability advocates and lawyers are invited to participate in a focus group or interview.

‘We hope the benefits of this project will include justice, healing and enhanced wellbeing for victim/survivors and the dementia community, and education and advancement of protections within future aged care and legal systems’ said Ms Swaffer.

Project findings will be shared with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, the dementia community, government, aged care sector, dementia, disability and older persons’ advocacy organisations, and professional associations.

Safe and Just Futures

Swaffer and Steele have a long interest in human rights and worked together with Professor Richard Fleming and A/Prof Lyn Phillipson on the project Safe and Just Futures for People Living with Dementia in Residential Aged Care. This project investigated how human rights law might be used to contest segregation of people living with dementia in residential aged care facilities.

The Safe and Just Futures project contributed to policy and law reform discussions around aged care and raised awareness among lawyers, advocates, human rights practitioners and policy makers about segregation and confinement in residential aged care and the importance of overcoming barriers to realising human rights of people living with dementia – including submissions to the Aged Care and Disability Royal Commissions. For more information read the Safe and Just Futures Report.

As part of Safe and Just Futures, a Summit on Human Rights for People with Dementia Living in Residential Aged Care was held in 2019. Participants at the summit, including people living with dementia, care partners, activists and academics, contributed to an Anthology on Human Rights of People Living with Dementia.

The aim of the anthology was to showcase diverse perspectives in favour of human rights of people living with dementia in order to communicate to law and policy makers and the wider community the growing support for recognising human rights of people living with dementia.

For example, Bobby Redman, dementia advocate diagnosed in 2015, states in the anthology:

‘Education is required for greater understanding; practices need to be reviewed in order that people receive the services and support that they require; and the law needs to be enforced to protect people from abuse. We don’t cease to be human when we develop dementia, we too have the right to live the best life we can.’

‘The Safe and Just Future project established human rights violations in aged care in Australia and the challenges of addressing them,’ said Dr Steele. ‘Dementia Redress is the next step, considering how we right the wrongs of these violations and ensure the past is not forgotten in our attempt to make a better future.’

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How the broader community can support the human rights of people living with dementia

by Eileen and Dubhglas Taylor (from an interview published in the Anthology).

The broader community can support human rights of people living with dementia by making a choice to support rights in general. This requires a growing awareness of what dementia is and the needs of people living with dementia.

As such, [they must] know about, accept and respect, human rights, and trauma of discrimination. They must understand the concept of full inclusion and the right to citizenship. They must facilitate, promote, and provide dementia friendly environments through signage, physical changes, and learning about what it means to be dementia friendly and inclusive.

In a dementia-friendly community people living with dementia are understood, respected and supported in such a way that people with dementia can continue to live in the way they want to and in the community they choose.

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For more information:

• Ending confinement and segregation: barriers to realising human rights in the everyday lives of people living with dementia in residential aged care By Linda Steele, Kate Swaffer, Ray Carr, Lyn Phillipson & Richard Fleming

• Human Rights and the Confinement of People Living with Dementia in Care Homes By Linda Steele, Kate Swaffer, Ray Carr, Lyn Phillipson & Richard Fleming.

• Questioning Segregation of People Living with Dementia in Australia: An International Human Rights Approach to Care Homes By Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming.

Image credit: Devon Bunce, Digital Storytellers. This image was created at the Summit on Human Rights for People with Dementia Living in Residential Aged Care in 2019.

How can we right the wrongs of abuse and neglect of people with dementia in aged care?

Share your views at a focus group or interview

People living with dementia, care partners and family members of people living with dementia who have been abused or neglected in aged care, and dementia and disability advocates and lawyers are invited to participate in a focus group or interview.

Discussions will focus on people’s views on ‘redress’ or righting the wrongs of abuse and neglect of people living with dementia in aged care. Questions will explore whether redress of abuse and neglect is necessary, why it is needed and how it can occur.

Discussions will take place over two stages, in separate sessions:

1. The first stage explores if redress is necessary and what it should aim to achieve.

2. The second stage explores how redress will operate and who should be involved in redress.

You can choose to participate in one or both stages. Participants have the option of participating online or in-person (subject to public health orders).

Participants will be offered a voucher to compensate for their time and travel costs (focus groups: $130; interview: $100).

If you would like to participate in this research project or find out more information please email dementia.redress@uts.edu.au or complete the participation form.