Submission on the Inquiry into the aged care sector’s current and future capacity to provide support services for people experiencing neurological cognitive disorders

Thank you for the opportunity to provide a submission on this inquiry. 

I do so in my capacity as Chief Ombudsman, and, in particular, in the context of my role as a National Preventive Mechanism (NPM) under the United Nations Optional Protocol to the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment (OPCAT) which New Zealand ratified in 2007 and which is given effect through the Crimes of Torture Act 1989 (COTA). 

My NPM role requires me to examine the conditions and treatment of persons detained in health and disability places of detention (including aged residential care) and recommend improvements to ensure that safeguards against ill-treatment are in place, and that poor practices or systemic problems are identified and addressed promptly.

I am also one of three partners who comprise New Zealand’s Independent Monitoring Mechanism (IMM), with obligations to protect and monitor the implementation of the United Nations Convention on the Rights of Persons with Disabilities (the Disability Convention). 

I therefore have a keen interest in engaging in, and being kept informed of, any developments relating to this inquiry that could impact on the rights of people with neurological cognitive disorders (or ‘dementia’) [1] and the conditions and treatment of people with dementia in aged residential care.

I encourage the Health Committee to ensure that any restructuring of services, funding, and resources across the care continuum respect, promote, and protect the rights of people with dementia.

Executive summary

In this submission I will outline the following:

1. Some of my roles [2] and functions and their relevance to the rights of people with dementia impacted by this inquiry;
2. My expectations for the conditions and treatment of residents in aged residential care;
3. My concerns relating to the verification and documentation of the legal basis for detention of residents in aged residential care.

The Ombudsman’s role monitoring the implementation of the Disability Convention

Dementia is an umbrella term used to describe a group of symptoms affecting brain function. The symptoms each person experiences depends on the parts of the brain that are affected. However, the most common dementia symptoms include changes in memory, thinking, behaviour, personality and emotions. These changes affect a person’s ability to perform everyday tasks and interfere with their everyday lives. [3] In New Zealand, approximately 70,000 people are living with dementia, which is projected to increase to 170,000 by 2050. Dementia numbers are increasing at a faster rate among Māori, Pacific peoples and Asian populations than among European New Zealanders. [4] The barriers faced by those living with dementia can be further complicated when combined with other impacts of aging on mobility, vision, and other physical aspects of life.

In accordance with Article 1 of the Disability Convention [5] people living with dementia are recognised as having a disability and therefore have the same rights and protections outlined in it.

The Disability Convention provides fundamental rights and protections such as non-discrimination (Article 5), equal recognition before the law (Article 12), liberty and security (Article 14), and freedom from torture or cruel, inhuman, or degrading treatment or punishment (Article 15). It also includes the right to have their integrity protected (Article 17), and to live independently in the community and access a range of appropriate services to support this (Article 19).

The Special Rapporteur on disabled people’s rights identified a range of human rights issues affecting people living with dementia, including stigma and stereotypes, the absence of rehabilitation services, being ‘assumed to possess weak or even no agency,’ being at greater risk than other older people of ‘violence, abuse and neglect,’ and a lack of building accessibility. [6]

The Special Rapporteur cites Article 12 of the Disability Convention as being particularly relevant here in emphasising the need for disabled persons to access the supports necessary in exercising their supported decision-making rights. They also note that older disabled persons are often denied the right to live independently, and to be included in the community, and the root cause of this is a lack of quality supports and services in the community. In particular, “while standards for older persons continue to extensively use the concept of “long-term care”, the Convention has moved away from the notion of care to develop a paradigm of support …... This terminological difference reflects the criticism of service models of care by the disability community for being paternalistic, reflecting the medical model and promoting the segregation, restraint and disempowerment of persons with disabilities”. [7]

A care continuum model contains appropriate services and supports for people with neurological cognitive disorders including home and community care to residential care, to palliative care.

The Special Rapporteur further noted that centres of confinement (or secure facilities) contain people from the most vulnerable situations, including those who are medically vulnerable, and ‘the powerlessness of those deprived of their liberty [may] leave them with no voice and few defenders to advocate for their dignity’. [8]

People with dementia in aged residential care (or ‘residents’) must be able to enjoy the same rights as anyone else. However, where these residents are unable to leave at will (‘detained’), they are more vulnerable, and dependent on others to meet their basic rights and needs. Those caring for residents in these situations have specific obligations to meet around supporting effective participation in society on an equal basis with others, as indicated in Article 1 of the Disability Convention.

The significance of these risks and obligations highlight the importance not only of my monitoring roles as IMM and NPM, but that of the Government and the wider aged care sector in ensuring appropriate services, funding, and resources are allocated to ensure residents in aged residential care can fully exercise and enjoy their rights, receiving the highest attainable standard of care on an equitable basis.

The Ombudsman’s role examining and monitoring secure aged residential care 

In 2018, the Minister of Justice made it explicit that the Ombudsman’s designation to examine and monitor health and disability places of detention includes privately run aged care facilities. [9] This encompasses aged residential care where people are unable to leave at will – primarily, secure dementia level care and/or specialised hospital care (psychogeriatric level care). [10]

This designation followed a series of publicised incidents and reports of poor treatment of residents in aged residential care, including a high use of restraint, prompting calls for additional oversight. [11] In 2018, Te Kāhui Tika Tangata | Human Rights Commission also released the report ‘This is Not My Home’, which explored legal and ethical issues around residential care for older people when the care is provided without the person's consent. I discuss this issue further at paragraph 31.

While government health sector audits and reviews play the important role of checking that a facility’s systems and practices comply with standards set by New Zealand authorities across all health and disability services, my role in this respect is preventive. By providing independent oversight of places of detention, I help to ensure that New Zealand is meeting international human rights obligations, both in principle and in practice.

From 2018, I developed a three-year monitoring programme, [12] which included establishing a system of regular orientation visits, building capacity, publishing my Expectations, and commencing inspections and visits from 2021. During this time, I also undertook COVID-19 inspections [13] and published two reports. [14] Between July 2021 and December 2023, my team visited 108 facilities out of 266 that provide aged residential care. [15] I am currently working on a thematic report, based on these visits.

This has been a multifaceted educational endeavour for both myself and the aged care sector, given the involvement of private providers. However, I note that while care is being provided by the private sector (with funding and contracts through Te Whatu Ora | Health New Zealand), the same obligations to uphold the rights of residents apply.

The United Nations Guiding Principles on Business and Human Rights (UNGPs) [16] provide a useful framework on the distinct duties and responsibilities of businesses to respect and protect human rights, as well as to provide remedy and redress where rights are impacted. In particular, I draw the Health Committee’s attention to the UNGP’s commentary on Principle 5, which notes, ‘States do not relinquish their international human rights law obligations when they privatize the delivery of services that may impact upon the enjoyment of human rights.’ [17]

Some additional benefits of implementing these principles may include promoting greater awareness among businesses of relevant laws and regulations, fostering relationships across the aged care sector and communities, improving a provider’s reputation and values, and building trust within communities and trading partners, whilst stimulating the economy.

The Health Committee may wish to refer to these principles when considering how to address the matters raised in this inquiry.

The Chief Ombudsman’s expectations for conditions and treatment of residents in aged residential care

I acknowledge the current challenges facing the aged care sector, particularly around staffing, and encourage the Health Committee to keep human rights obligations at front of mind when they are considering any new proposals regarding funding models, services, care, and resources.

I also recognise that aged residential care providers are only one part of a wider health and disability system that provides care and support to residents in aged care. My focus is on the experience of, and outcomes for, residents in aged residential care who are unable to leave at will. In April 2024, I published a revised version of my Expectations, which may be a useful reference for the Health Committee as part of its inquiry.

These expectations are intended to provide residents, their whānau, any person or agency involved with aged residential care, Parliament, and the public with an understanding of some of the matters I consider when examining aged residential care facilities. They also guide my staff when they are carrying out visits and inspections as part of my monitoring programme.

My expectations and areas of interest are based on international and domestic human rights law and guidance, which are listed in my Expectations. My expectations are also informed by Te Tiriti o Waitangi | The Treaty of Waitangi [18] and its principles, including those articulated in the Waitangi Tribunal’s kaupapa inquiry into health services and outcomes (Wai 2575). These must be given due regard in the care of residents, including when interpreting my expectations.

My overarching expectations for the conditions and treatment of residents in aged residential care who cannot leave at will are:

1. The rights of residents are upheld by people, principles, and practices, at all levels. 
2. Residents are safe and their independence is promoted. 
3. Residents are treated with dignity and respect.
4. Residents enjoy the highest attainable standard of physical and mental health. 
5. Residents are in an environment that promotes their safety, independence, culture, dignity, and wellbeing.
6. Residents are supported by skilled, motivated, and engaged people.

Areas of interest for my monitoring include equity and inclusion, choice, consent, and supported decision-making, [19] use of restrictions and restraint, access to activities, rehabilitation, whānau, and the outside world, appropriate physical environment, equivalence of medical care, and adequate staff resourcing, training, and quality improvement. The expectations and example areas of interest are indicative only and are not intended to be exhaustive.

Placement in the facility

One particular issue that I have encountered in my monitoring of aged residential care, which I have communicated to Te Whatu Ora | Health New Zealand, is the need to verify and document the legal basis for detention of any resident. [20]

My expectation is that no person is deprived of their liberty unless in accordance with the law, and with all associated legal protections. I expect that when people are admitted to aged residential care, there will be a thorough assessment that follows legal processes and is appropriately documented. Further, my expectation is that residents are the primary decision-makers in processes and decisions around their care to the fullest extent possible.

I routinely look at the legal basis for each resident’s placement in a secure unit when examining aged residential care, which includes reviewing documentation relating to the basis for admission into secure care. I have found variable records of the legal authority for placement in aged residential care, including decision-making capacity assessments and the ‘consent’ of an authorised representative or a court order.

In my examinations, I have observed:

1. Enduring Powers of Attorney (EPOAs) not being followed or activated, or being incomplete; 
2. No documentation of the legal basis for admission [21] being found on file at facilities; 
3. Whānau and/or staff having difficulty in locating EPOAs; [22] and
4. Confusion within the system (including professionals) over how the legal framework, and relevant processes, operate. 

In several instances, I have highlighted my concerns about the lack of consistent or reliable processes to verify and record the legal basis for consent for a resident’s placement in a secure unit. I consider that this may present a risk of arbitrary deprivation of liberty.

These concerns have also been raised by the UN Working Group on Arbitrary Detention, which has highlighted that ‘protection gaps exist [in] the reclusion of older persons, particularly those suffering from dementia, in secure facilities and rest homes.’ [23]

I note that Te Aka Matua o te Ture | the Law Commission is currently reviewing New Zealand’s adult decision-making capacity law. [24] I encourage the Health Committee to consider the types of safeguards needed to ensure that facilities have appropriate legal authority for placing people in secure aged residential care.

Conclusion

I welcome the Health Committee’s inquiry into the aged care sector's current and future capacity to provide support services for people experiencing neurological cognitive disorders. I acknowledge the importance of ensuring that appropriate services, funding models, resources, and processes are in place to do so – and encourage the Health Committee to ensure that the rights of those affected, namely, people living with neurological cognitive disorders, are considered and centred throughout this process.

Footnotes