Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides people with disability the right to independent living and community inclusion. This means people with disability should be able to live where they choose and with whom they choose. Providing access to accommodation in the form of largescale residential institutions, however, is inconsistent with this right, and governments now have an obligation to plan for deinstitutionalisation.
This blog highlights the new Guidelines on deinstitutionalization, including in emergencies, adopted by the United Nations CRPD in September 2022. We explain the important connection between reparations and deinstitutionalisation, and how the Dementia Justice Project is providing an evidence-base to support realisation of Article 19.
Dementia as a disability
Dementia Australia estimates 487,500 people are currently living with dementia in Australia, and this will increase to 1,076,000 people by 2058. The Alzheimer’s Disease International 2021 World Alzheimer’s Report estimated 42 million people living with dementia do not have a formal diagnosis. In Australia, Dyer et al (2018) found many people with likely mild cognitive impairment or some form of dementia living in residential settings also lack a formal diagnosis.
The World Health Organisation confirms dementia is a major cause of disability and dependence globally, hence people living with dementia should enjoy the same rights under the Convention on the Rights of Persons (CRPD). People living with dementia should also have equal rights under other human rights conventions and treaties such as the International Covenant on Civil and Political Rights and the Convention Against Torture (OPCAT).
Abuse in institutional settings
Institutional settings such as large residential care facilities, are under more scrutiny than ever before. The COVID pandemic highlighted long-term problems of poor care, violence, abuse and neglect in large residential care facilities. Examples include low levels of meaningful, relationship-centred activities, poor quality food, lack of opportunities for exercise or outings into the community, and low visitor numbers.
There has been concern for decades that people living with dementia are at particular risk of elder abuse (including mistreatment, violence, including high levels of sexual assault against women with dementia, abuse, and neglect) in institutional (large residential care and hospital) settings, however there was little data to confirm such fears. Despite 20 years of taxpayer-funded, formal enquiries into aged care systems in Australia, reports of abuse have continued. In 2017, whistle-blowers highlighted violence occurring in the Oakden facility in South Australia, including use of restrictive practices. This was followed by the Royal Commission into Aged Care Quality and Safety from 2018 to 2019.
The Royal Commission comprised 23 public hearings over 99 days, 641 witnesses, and over 10,000 public submissions. The Royal Commission resulted in the final report with 148 recommendations, but surprisingly, and disturbingly, not one recommendation addressed the issue of redress or reparations for past harms to people living in residential or community care, or deinstitutionalisation.
The violence, abuse, and neglect of people living with dementia in large residential care facilities (and the community) is unacceptable. Finding solutions is challenging but essential. The institutional nature of care is a significant reason for violence, abuse, and neglect in residential care settings. This has occurred for other institutionalised populations such as children living in orphanages and people with disabilities in institutions. Research into the harms done to people living in residential aged care facilities has also increased over the last decade, demonstrating this not only a problem in Australia, but also in other countries including the United States, Canada and the United Kingdom.
Ultimately, when violence is inherent to institutional residential care, a core part of the solution to ending violence is to provide access to alternative accommodation and supports and disband institutions.
UN CRPD Guidelines on Deinstitutionalisation
Article 19 of the CRPD provides that people with disabilities have the right to independent living and community participation. In the 2017 General Comment on Article 19, the CRPD Committee explained that ‘independent living’ is about choice and control over one’s residence and life:
“individuals with disabilities are provided with all necessary means to enable them to exercise choice and control over their lives and make all decisions concerning their lives. Personal autonomy and self-determination are fundamental to independent living, including access to transport, information, communication and personal assistance, place of residence, daily routine, habits, decent employment, personal relationships, clothing, nutrition, hygiene and health care, religious activities, cultural activities and sexual and reproductive rights…
Independent living is an essential part of the individual’s autonomy and freedom and does not necessarily mean living alone. It should also not be interpreted solely as the ability to carry out daily activities by oneself. Rather, it should be regarded as the freedom to choose and control, in line with the respect for inherent dignity and individual autonomy…”
The Committee states that governments have the obligation to "adopt a strategy and a concrete plan of action for deinstitutionalization". This should include "the duty to implement structural reforms, to improve accessibility for persons with disabilities within the community and to raise awareness among all persons in society about inclusion of persons with disabilities within the community". Moreover, deinstitutionalisation:
“requires a systemic transformation, which includes the closure of institutions and the elimination of institutionalizing regulations as part of a comprehensive strategy, along with the establishment of a range of individualized support services, including individualized plans for transition with budgets and timeframes as well as inclusive support services.”
In September 2022, the Committee published Guidelines on deinstitutionalization, including in emergencies in order to complement the 2017 General Comment on Article 19. The Guidelines can help governments in realising Article 19. They also provide a basis for planning deinstitutionalisation processes, and prevention of future institutionalisation.
The Guidelines explain that institutionalisation of persons with disabilities refers to
“any detention based on disability alone or in conjunction with other grounds such as ‘care’ or ‘treatment’”.
Such institutions include those relevant to people living with dementia, notably nursing homes, secure dementia wards, psychiatric institutions, and long-stay hospitals.
The Guidelines describe how governments have failed to deinstitutionalise and that institutions continue to be harmful to people with disability:
“Despite obligations under international law, persons with disabilities worldwide continue to be placed in institutions under life-threatening conditions."
The Committee observes that deinstitutionalization processes are either not compliant with the Convention or are overdue.
"Institutionalization is a discriminatory practice against persons with disabilities, contrary to article 5 of the Convention. It involves de facto denial of the legal capacity of persons with disabilities, in breach of article 12. It constitutes detention and deprivation of liberty based on impairment, contrary to article 14.
States parties should recognise institutionalization as a form of violence against persons with disabilities. It exposes persons with disabilities to forced medical intervention with psychotropic medications, such as sedatives, mood stabilizers, electro-convulsive treatment, and conversion therapy, infringing articles 15, 16 and 17. It exposes persons with disabilities to the administration of drugs and other interventions without their free, prior and informed consent, in violation of articles 15 and 25.”
The Guidelines emphasise the importance of people with disabilities, including people who have been affected by institutionalisation, leading deinstitutionalisation processes. As such processes of deinstitutionalisation should not be led by those involved in managing or perpetuating institutions.
The Guidelines continue the CRPD Committee’s progressive approach to deinstitutionalisation, which is in contrast with other parts of the United Nations. For example, the WHO and OHCHR recent Call for inputs to the Draft guidance on ‘Mental Health, Human Rights, and Legislation’ seeks an end to all forms of coercion, but still maintains a health-service dominated approach. This falls short of recognising the inherent harmfulness of institutions and the need for deinstitutionalisation.
The role of reparations in deinstitutionalisation
The Guidelines identify a specific role for reparations in deinstitutionalisation, stating that governments should ensure legal and policy frameworks:
“enable the full inclusion of all persons with disabilities and guide deinstitutionalization processes towards the closure of institutions. Such frameworks should enable the development of inclusive community support systems and mainstream services, the creation of a reparations mechanism, and guarantee the availability, accessibility and effectiveness of remedies for survivors of institutionalization.”
In Part IX (remedies, reparations and redress) the Guidelines state that governments:
“should provide individualized, accessible, effective, prompt and participatory pathways to access to justice for persons with disabilities who wish to seek redress, reparations and restorative justice, and other forms of accountability.”
The Guidelines provide that reparations for institutionalisation should include formal apologies, financial compensation, include restitution, habilitation and rehabilitation, and establishment of truth commissions.
What does this mean for Australia?
As a signatory to the CRPD, the Australian Government must meet its obligations under Article 19, including developing a plan and strategy for deinstitutionalisation which extends to residential aged care facilities and secure dementia care units. As part of this, the Australian Government must develop a legal framework for reparations which involves the multiple forms identified in the guidelines, and this reparations framework must be available to people living with dementia in residential aged care.
Dementia Justice Project
Our project is the first international research known to advance a human rights case for reparations for people living with dementia and to empirically study reparations for people living with dementia in aged care. We’re finding that people living with dementia and their family members and care partners agree on the necessity of reparations. This is particularly in light of the ongoing and longer-term impacts of harm, and the failures of Government and aged care providers for decades.
The project provides an evidence-base for what people living with dementia and their family members and care partners want as the types and processes of reparations. As such, the project provides an important source of information for the Australian Government on how reparations could be constructed and delivered. The research also provides insights for other nations grappling with how to respond to, and repair, the harms of institutionalisation for people living with dementia and other people with disability experiencing institutionalisation.