Human Rights don't diminish with age (2022)

Council of the Ageing (COTA) - Northern Territory (NT)
COTA NT Aged care forum: Once in a lifetime reform

2 August 2022 - Parliament House, Darwin
4 August 2022 - Crowne Plaza Alice Springs Lasseters, Alice Springs

Keynote address: Human Rights don't diminish with age

Due to unforeseen circumstances, this speech was not delivered as originally planned on 2 August 2022 (Darwin) and 4 August 2022 (Alice Springs).

Introduction

• I would like to thank COTA NT for inviting me to speak at today’s conference.
   
• [DARWIN EVENT ONLY] I wish to acknowledge the Larrakia peoples as the traditional owners of the land from which I speak and pay respect to their Elders, past, present and emerging.
   
• I also want to acknowledge:
  • [DARWIN EVENT ONLY] The Hon Natasha Fyles MLA, Chief Minister of the Northern Territory; Minister for Alcohol Policy; Minister for Defence; Minister for Health, Minister for Major Projects
  • My fellow speakers:
    • Ms Janet Anderson PSM, Aged Care Quality and Safety Commissioner
    • Mr Ian Yates AM, Chief Executive, COTA Australia
    • Ms Gill Yearsley, Chief Executive Officer, Northern Territory Primary Health Network
       
• As Age Discrimination Commissioner, I have made it my priority during my term to address three major manifestations of age discrimination — elder abuse in the community, older women’s risk of homelessness and age discrimination and the workplace.
   
• While I hold deep concerns about issues in aged care. It has not been a central focus of my role as Age Discrimination Commissioner.
   
• This was because there is an Aged Care Quality and Safety Commission which is responsible for protecting and enhancing the safety, health and wellbeing of people receiving aged care services. I am sure you will learn more about this from Commissioner Anderson later today. 
   
• In addition, the Federal Government also funds the Older Person’s Advocacy Network which has responsibilities to advocate for older people in residential aged care and aged care in the home – I have a very good working relationship and frequently consult with their CEO Craig Gear.
   
• Having said that, my team and I kept a close eye on the Aged Care Royal Commission from a human rights perspective especially in relation to the central human rights themes that have emerged concerning the delivery of person-centred care and issues around autonomy and independence.
   
• I am also a member of the Council of Elders, which was established by the Australian Government to consult with senior Australians and provide advice about aged care reform and ageing generally.
   
• Today I will be speaking to you on the topic of human rights and ageing, and what this means in practical terms for older people in aged care and for aged care providers.

Ageism and aged care

• I want to start by making some comments about ageism.
   
• In 2021, the World Health Organization released the “Global Report on Ageism”. It contains one of the best definitions of ageism I have come across:
  • ‘Ageism refers to the stereotypes (how we think), prejudice (how we feel) and discrimination (how we act) directed towards people on the basis of their age.” [i]
     
• Ageism undermines the human rights of older Australians and is an obstacle to achieving an aged care system which respects and supports human rights.
   
• It can also result in older people feeling they cannot exercise their rights and that their concerns are not being acknowledged and addressed.
   
• Ageism can be malevolent or benevolent. Families, health professionals and institutions like aged care facilities can overprotect and reduce an older person’s autonomy – sometimes to the point of malevolent ageism, which can lead to the ignoring of the wishes and autonomy of older people, abuse and neglect.
   
• Individuals working in health and aged care services can reinforce and perpetuate ageism and discrimination based on age, often through unconscious bias.
   
• When ageist attitudes are reflected in behaviour, this becomes age discrimination. This may be demonstrated in:
  • the types of services available to older people
  • age-based assumptions about their preferences and capabilities
  • language used when interacting with or talking about them.
     
• Ageism is therefore an insidious and pervasive factor in diminishing older peoples’ human rights that we need to be on the look out for in all contexts, including in aged care.

A human rights approach to aged care

• What does a human rights approach to aged care look like?
   
• In my submission and subsequent appearance before the Aged Care Royal Commission – prior to COVID – I noted the importance of the need for the Royal Commission to look at aged care through a human rights lens.
   
• To quote from my submission, “… we need much more than a 'tick-a-box' approach.” I suggested that this was vital "so that the care received by every Australian is not 'just good enough' but is 'more than good enough." [ii]
   
• It is a fundamental human right that people living in residential aged care be treated humanely, with dignity and with respect for their autonomy.
   
• This means that the preferences and needs of older people really must be the driving force behind the provision of aged care.
   
• I recently came across an amazing story of a 100-year-old who returned home after recouping from a back injury. They had been in residential aged care for two years. This is an older person exercising her choice and her right to live independently in her own home and being supported to do so whilst maintaining her health and autonomy.
   
• This is a good example of an older person’s needs and preferences being put at the centre and the aged care system and services being wrapped around to support this outcome.
   
• The translation of a human rights-based approach into practice is helpfully informed by what’s known as the ‘PANEL principles’ – Participation, Accountability, Non-discrimination and equality, Empowerment, and Legality.
   
• Participation in an aged care context would require care recipients to have free and meaningful participation in decisions affecting their rights and about their care. Information must also be accessible, and mechanisms put in place to enable participation.
   
• For example, aged care assessors may witness a family member pressuring an older person to apply for residential care. In some instances, this could constitute elder abuse. Mechanisms or guidelines to enable assessors to see clients on their own may be required or may need to be strengthened in this regard.
   
• I am also of the view that assessments used to determine an individual’s decision-making capacity need research and refining to ensure they can differentiate the circumstances and domains in which a person does or does-not have decision-making capacity. There should also be opportunities for reassessment of a person’s decision-making capacity.
   
• Accountability in the provision of aged care services would require the development of appropriate policies, procedures and mechanisms to monitor how people’s rights are being affected and to provide remedy when things go wrong.
   
• Horrific accounts of abuse and neglect have come to light through the Royal Commission into Aged Care Quality and Safety. The Commission estimated that there are approximately 50 residents per week experiencing sexual abuse and 30.8% of residents living in aged care facilities have experienced neglect. [iii] This is wrong and we must do everything we can to ensure such incidents do not happen again and perpetrators of these crimes are held to account.
   
• Non-discrimination and equality. Research indicates a strong link between ageism and risks to older peoples’ physical and mental health, plus the quality of health care received.
   
• To give one example, a person in residential aged care was assumed by aged care staff to have limited capacity or declining faculties when in fact her hearing was obstructed by impacted wax in her ears.
   
• This shows how ageism and unconscious bias can seep into the behaviours of aged care workers and influence assumptions about residents’ preferences and capabilities. This highlights the importance of addressing ageism, such as through education for staff and fostering of intergenerational programs to counter ageist attitudes. 
   
• Next is Empowerment. In the context of aged care, older persons should be provided with information about their rights and how they can exercise their rights, including through advocacy or communication supports as appropriate.
   
• Finally, Legality requires recognition of rights as legally enforceable and grounded in domestic and international law. It will be important for stakeholders to participate in law reform processes to ensure rights are embedded in law and legally enforceable.
   
• The PANEL framework is one way to embed human rights into aged care. That is: Participation; Accountability; Non-discrimination and equality; Empowerment; and Legality.
   
• We can also learn from elsewhere in the world.
   
• Drawing on other jurisdictions like Scotland, England, and Wales, which have implemented a human rights approach in the provision of health services, [iv] we can see that training has a vital role to play in applying a human rights approach in practice.
   
• For example, education and training for aged care decision-makers, service providers and staff will be essential on topics such as elder abuse, ageism, human rights, and understanding the scope and limitations of enduring documents – for example, sometimes enduring documents can be inappropriately used to restrict who can visit an aged care resident.

What you can do to protect your rights in aged care

• What can you do to protect your rights in aged care?
   
• There are 5 simple actions you can take:
   
• Know your rights. If you receive government-subsidised aged care services, the Aged Care Charter of Rights outlines your rights as a consumer, regardless of whether you receive home care services or are living in an aged care facility. The Charter is readily found online and outlined in a straightforward video. [v] ​​​​​
   
• Know where to get support. If you have questions about the care you or someone you know is receiving or if you are concerned about elder abuse, you may wish to contact:
  • Older Persons Advocacy Network
  • Aged Care Quality and Safety Commission
  • National Elder Abuse Phone Line on 1800 ELDERHelp (1800 353 374).
     
• Ensure you have your documents in place.  Whenever I speak publicly, I always encourage people of all ages to have their enduring documents in place and keep their wills and Powers of Attorney updated. These documents are important tools for safeguarding your will and preferences as you age but they can also become instruments for abuse, so it is critical you understand your rights as principal and if you are appointed to be someone’s power of attorney or guardian make sure you understand your responsibilities and what you can and cannot do in the role. If you do have an enduring document in place, ensure that your aged care provider knows about it, understands your rights, and when an EPOA becomes active.
   
• Don’t internalise ageism. Several studies by Professor Becca Levy of Yale University have identified a significant association between internalised ageism and numerous health outcomes including physical functioning, mental health conditions, cognitive decline, cardiovascular stress, and longevity. [vi]
   
• Stay connected. Whether that be with family members, friends, or community through local activities. Isolation is a risk factor for abuse, and loneliness has been shown to be the equivalent of smoking 15 cigarettes a day. Remaining connected to others is a way of self-protection.

Conclusion

• Human rights do not diminish with age. Nor do rights change as we transition into various forms of care.
   
• We must put people at the heart of all aged care initiatives, so that the care received by every Australian accessing it is not ‘just good enough’ but is ‘more than good enough.'
   
• Adopting a human rights based approach to aged care, learning from best practice elsewhere in the world, and utilising technology all contribute to enhancing a consumers’ experience of aged care.
   
• Individually, we also have a responsibility to ensure that we are aware of our rights; have documentation in place to protect our rights; know the services we can call for advice and support when needed; be mindful of our own internalised ageism; and lastly, remain connected to others, including friends, family, and community groups.
   
• Family and friends also have a role to play in reducing risk factors. This can be as simple as making a call or visiting an older person to see how they are.
   
• I have said over and over that some of us will require aged care in the future – and the culture we set now will be the culture we inherit.
   
• It all adds up and can be summarised very simply as older people in residential aged care and aged care in the home deserve respect.

Thank you

[i] World Health Organization, ‘Global report on ageism’. At: https://www.who.int/teams/social-determinants-of-health/demographic-change-and-healthy-ageing/combatting-ageism/global-report-on-ageism (viewed 20 May 2021).

[ii] Royal Commission onto Aged Care Quality and Safety, Research paper 4 – https://agedcare.royalcommission.gov.au/sites/default/files/2020-07/research_paper_4_-_what_australians_think_of_ageing_and_aged_care.pdf

[iii ]Elder abuse in Australian aged care facilities, Media Release (21 December 2020). At https://agedcare.royalcommission.gov.au/news-and-media/elder-abuse-australian-aged-care-facilities.

[iv] See for example: National Health Scotland, Human Rights and the Right to Health (9 December 2016); Scottish Human Rights Commission, Human Rights in a Health Care Setting: Making it Work, An Evaluation of a Human Rights Based Approach at the State Hospital (Report, 10 December 2009); Department of Health (UK), Human Rights in Healthcare: A Framework for Local Action (2nd Edition, October 2008).

[v] Aged Care Charter of Rights accessed 14th July, 2022. Available: https://www.agedcarequality.gov.au/consumers/consumer-rights

[vi] Steward, Andrew, (2021), Toward interventions to reduce internalized ageism, Journal of Human Behavior in the Social Environment, 32:3, 336-355