Amplifying Choice, Control and Human Rights for older people and their allies - Groundhog Day in Aged Care in Australia?

Amplifying Choice, Control and Human Rights for
older people and their allies - Groundhog Day in
Aged Care in Australia?
1
Nothing about me without me www.carriehayter.com
Carrie Hayter,
Managing Director
7th Annual MARC Symposium
Reforming Ageing and Aged Care
Pathways to success
15 September 2021

• We would like to acknowledge the traditional
owners of the Land, the Gadigal People of the
Eora Nation and
• Always was and always will eb Aborigibnal Land to pay our
respects to Elders past and present
Image credit – David Foster downloaded from
https://www.australiangeographic.com.au/topics/history-culture/2016/04/speaking-up-australian-aboriginal-languages/

About Carrie Hayter
3
Empowering people
who use social care to
be in charge of their
funding and supports
Amplifying the
voices of older
people, people with
disability and their
allies in research
and service
systems

15/09/2021
Enhancing Independence and Person
Centred Approaches © Carrie Hayter
Consulting
4

Introduction
• Explore issue of choice and human rights for older people and
their allies who use aged care services
– Tensions between the mechanisms to enable choice and
human rights
• What are the lessons from the history of aged care policy in
Australia?
• What are opportunities for consumers, researchers, providers
and policy makers?
5

15 September 2021
Active Ageing Conference © Carrie Hayter
Consulting
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Source:https://www.theday.com/article/20200511/OP06/200519990

History Matters
• Over 40 parliamentary inquiries, government
commissioned inquiries into aged care funding and
policy in Australia since the 1970’s.
– Persistent stories of abuse and neglect of older people
– Underfunding of care
• Why does the issue of choice and human rights for
older people feel like ground hog day in aged care
policy?
7

Institutionalist Framework
Historical Institutionalists
Analyse institutional
configurations and explore
critical junctures and long-
term processes across
institutions (Thelen 1999,
Pierson & Skocpol, 2002,
Meyer et al, 2020)
Discursive
Institutionalists
Discourse and language and
how issues are framed, rather
than just focusing on
institutions, they see
opportunities for resistance
from individuals
(Schmidt, 2008, 2016)
15 September 2021 8

History of rights of people using
aged care
• Late 1970s and early 1980’s stories of mistreatment
and neglect of residents living in nursing homes
(Gibson, 1998)
• Emergence of state-based complaints units and a
Charter of Residents Rights and Responsibilities in
nursing homes and hostels 1991 from the Ronald
Report (Gibson, 1998)
• Creation of Aged Care Advisory Councils and
consumer groups to inform government policy in the
early 1990’s (Gibson, 1998)
15 September 2021 9

History of the rights of people
using aged care
• Statement of Rights and Responsibilities HACC
1990-1991
– Client rights
• Aged Care Quality Standards (2019) & Aged
Care Charter of Rights (2019)
– More personalised language
– Are were there yet?
15 September 2021 10

Choice and Human Rights –
Competing tensions?
Human Rights Perspective
• Empowerment
• Response to failures of
welfare states in meeting
individual needs
• Consumer rights/
citizenship movements
(Moffatt et al, 2011, Clark,
2006),
Neo-liberal Economic
Perspective
• Choice as agency
• Efficiency and
effectiveness
• Rational actors choosing
and arranging care –
clients become customers
(Osborne and Gaebler, 1993,
Greener, 2008)

Pivotal Turn - Aged Care Act 1997
• Embedded the principles of new public
management into aged care policy (Hayter,
2008)
– Clients become customers
– Creating a market of care
– Capital funding of residential aged care was
outsourced via the payment of bonds
– Funder/ provider split

Destination
“Consumers, their families and carers are
proactive in preparing for their future care
needs and are empowered to do so”
(Aged Care Sector Committee, 2016)
“A single aged care and support system
that is market based and consumer driven,
with access based on assessed need”
(Aged Care Sector Committee, 2016)

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Nothing about us without us www.carriehayter.com

What are the current discourses in
aged care policy?
• Discourse on ageism
– COVID 19 pandemic and reporting via the media
– Does our aged care system reproduce ageism?
• Marketisation discourse
– Older people as ‘customers’ operating in a market of choice and
control
– Magic pill of marketisation swallowed by policy actors and providers
• Emerging human rights discourse
– Abuse and neglect stories from the Royal Commission into Aged Care
Quality and Safety
– See, hear and acknowledge the person, people first
15

Opportunity of the COVID 19
Pandemic
• Resurgence of Keynesian economics and ‘state
intervention’.
• Older people across the world who have been
disproportionately impacted by the pandemic
(United Nations, 2020).
• Repositioning of people not as ‘consumers’ in a
market-place but citizens with human rights?
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Moving out of Ground Hog Day – Embedding
Human Rights in Aged Care
A new Aged Care Act
• What are the principles we want embedded in
the Act?
– Whose voices are being heard in development of
the new Act?
– What UN Conventions can we use to frame the
new Aged Care Act?
• United Nations Sustainable Development Goals (United Nations)
• Decade of Healthy Ageing (World Health Organisation, 2021)

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UN Convention on the Rights of
Persons with Disabilities 2006
Purpose of Convention – Article 1
To promote, protect and ensure the full and equal
enjoyment of all human rights and fundamental
freedoms by all persons with disabilities, and to
promote respect for their inherent dignity
Source: Downloaded from https://www.un.org/development/desa/disabilities/convention-on-the-
rights-of-persons-with-disabilities.html

UN Convention on the rights of
older people
The Global Alliance for the rights of older people is advocating for a convention on the
rights of older people. The benefits may include:
• act as an anti-discriminatory tool to challenge prevailing stereotypes about old age
• require governments to collect data, develop indicators and other supporting
instruments to underpin the monitoring process
• refocus the existing human rights obligations of Member States taking into account
the challenges of people while they age and improve state accountability
• generate clarity and guidance with which civil society can work alongside the
government to implement
• increase visibility of older persons in societies
(source: Global Alliance for the Rights of Older People downloaded from
https://rightsofolderpeople.org/).
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A human right-based approach –
PANEL Principles
• Participation – People should be active participants in how their support and care is received
and provided (eg Consumer Engagement Framework, Supported Decision Making
framework)
• Accountability- Accountability requires effective monitoring of human rights standards as
well as effective remedies for human rights breaches (eg Elder Abuse protocols, open
disclosure and complaints processes)
• Non-discrimination and equality - all forms of discrimination in the realisation of rights must
be prohibited, prevented and eliminated (eg policies and practices of LGBTI inclusive practice
or Culturally and Linguistically Diverse communities, Cultural respect for Aboriginal and
Torres Strait Islander Elders )
• Empowerment - individuals and communities should know their rights (Aged Care Charter of
Rights and the role of Older People’s Advocacy Network (OPAN))
• Legality - recognition of rights as legally enforceable entitlements and is linked in to national
and international human rights law.
(Source: Care and Rights (2019), What are human rights? Downloaded from
http://careaboutrights.scottishhumanrights.com)

Ageism, Know it, Name it
“Discrimination and stereotyping on the basis of a
person’s age” (Applewhite, 2016, pg 8)
Discrimination against our future selves.
Ageism Awareness Day – 1 October 2021
https://www.everyagecounts.org.au/ageism_awareness_day_2021
Policies, practices and language that challenges ageism
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Aged Care Policy
• Aged care is health care
– Increasing vulnerability of older people living in residential
aged care
– Two tiered system, COVID Pandemic brought this into the
public eye
• Funding and resourcing
– $17.2 billion dollar investment from the Australian
Government is a start but not enough
– Superannuation or Medicare levy to fund aged care?
– Increasing pay rates for frontline staff
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Policy makers and policy actors
• Ageing and aged care should be a higher priority for
Government
– Older people and their families vote
• Complexity of choice and control
– Individualisation of funding to embed choice and control
for older people is a blunt instrument
– Block funding of CHSP has supported older people and
their allies during the pandemic? Why change it?
• Bundle services and flexibility for providers to partner with older
people and their allies
23

Policy makers and policy actors
• Interdependence and adaptive ageing
– Relationships and connections as we age, it takes a village
• Outsourcing of Aged Care Assessment Teams
– Where is the evidence? Who benefits? (Sydney Morning Herald, 6
September 2021)
– Neo-liberal view of funder/ provider split
• Leadership and forums where we bring together policy makers,
consumers and researchers together
– Fierce debates about evidence and who benefits?
– Australian Association of Gerontology, Australian and New Zealand
Society for Geriatric Medicine, Older People’s Groups and Industry
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Aged Care Providers
• Proportionality of response to COVID 19
–Balancing safety with dignity of risk
–Rapid Antigen Testing
• Fair Approach to Human Rights
–Thinking it through – Scottish Human
Rights Commission
25

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FAIR Approach to Human Rights – Thinking it through
Facts
What is the experience of the individual? Is the individual being
heard and if not, do they require support to do so?
What are the important facts to understand?
Analysis of Rights at stake
What are the human rights or issues at stake?
Is the right to life or the right not to be subjected to inhuman or
degrading treatment at stake? If so, these rights are absolute and
cannot be restricted.
Can the right be restricted? What is the justification for restricting
the right?
Is the restriction of the right ‘proportionate’?
Identification of shared responsibilities
What changes are necessary?
Who has responsibilities for helping to make the necessary changes?
Review actions
Have the actions taken been recorded and reviewed and has the
individual affected been involved
(Source: Care and Rights (2019), What are human rights? Downloaded from http://careaboutrights.scottishhumanrights.com)

Engagement and involvement of
older people and their allies
• Engagement and involvement is an ongoing process
• Engagement Tool kit, developed for aged care providers to develop
effective engagement and involvement mechanisms
– Organisational resources
– Staff Tool
– Guide to engagement methods
• Creative common license owned by the University of Queensland
https://nmsw.uq.edu.au/client-engagement-toolkit
• COTA QLD
– https://www.cotaqld.org.au/information/consumer-
engagement/resources-for-enhancing-consumer-engagement-in-aged-
care/

Supported Decision Making and
Engagement
PRINCIPLE 1: All adults have an equal right to make decisions that affect their
lives and to have those decisions respected;
PRINCIPLE 2: Persons who require support in decision making must be
provided with access to the support necessary for them to make,
communicate and participate in decisions that affect their lives;
PRINCIPLE 3: The will, preferences and rights of persons who may require
decision-making support must direct decisions that affect their lives; and
PRINCIPLE 4: Laws and legal frameworks must contain appropriate and
effective safeguards in relation to interventions for persons who may require
decision-making support, including to prevent abuse and undue influence
(source: Sinclair, C., Field, S., & Blake, M. (2018). Supported decision-making in aged care: A policy development guideline for
aged care providers in Australia. (2nd Edition) Sydney: Cognitive Decline Partnership Centre downloaded from
https://cdpc.sydney.edu.au/research/planning-decision-making-and-risk/supported-decision-making/)
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Involving older people and their
allies in research
• How do we involve older people and their
allies in our research not just as participants
but in designing the research?
– Nothing about us without us
• How do we communicate the outcomes of our
research to the community, older people and
policy?
Consulting
29

Building the capacity of older
people as researchers
• How do we bring clinicians, researchers and
consumers together so they can work collaboratively
on research and understand each other?
• How can we involve consumers in clinical trials,
providing plain English information and support?
• Supporting consumer researchers, people with lived
experience as equal partners in our research
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Breaking the groundhog day?

Human Rights and Older People
online discussion group
Source: https://slack.com
Australian Association of Gerontology and
other academic and policy forums

References
Aged Care Sector Committee (2016), Aged Care Roadmap, Aged Care Sector Committee
Aged Care Quality and Safety Commission (2019), Aged Care Quality Standards downloaded from
https://www.agedcarequality.gov.au/providers/standards
Aged Care Quality and Safety Commission (2019), Aged Care Charter of Rights (2019) downloaded
https://www.agedcarequality.gov.au/consumers/consumer-rights
Applewhite, A., (2016) This Chair Rocks – A Manifesto against Ageism, Melville House, America
Clarke, J. (2006). Consumerism and the remaking of state-citizen relations in the UK. In G. Marston & C. McDonald (Eds.),
Analysing Social Policy - A Governmental Approach. UK: Edward Elgar.
Every Age Counts (2021), Ageism Awareness Day, https://www.everyagecounts.org.au/ageism_awareness_day_2021
Gibson, D. (1998). Aged Care, Old Policies New Problems. Australia: Cambridge University Press.
Global Alliance for the Rights of Older People downloaded from https://rightsofolderpeople.org/).
Greener, I. (2008). Choice and Voice – A Review. Social Policy and Society, 7(02), 255-265. doi:doi:10.1017/S1474746407004204
Hayter, C., (2008) Funding and Regulation of Residential Aged Care Services in Australia and the Aged Care Act 1997- Turning
Knights into Knaves, Honours thesis submitted for Masters of Economics, University of Sydney

References
15 September 2021
Consulting
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Meyer, Michael ; Moder, Clara ; Neumayr, Michaela ; Vandor, Peter Civil Society and Its Institutional Context in CEE , Voluntas (Manchester,
England), 2020-08, Vol.31 (4), p.811-827
Moffat, S., Higgs, P., Rummery, K., & Ree Jones, I. (2011). Choice Consumerism and Devolution: Growing Old in the Welfare States of Scotland,
Wales and England. Ageing and Society, 32(5), 1-22.
Schmidt, V., (2008,) Discursive Institutionalism: The Explanatory Power of Ideas and Discourse, Annual Review of Political Science, Volume 11 (1),
pp 303-326
Schmidt, V., (2016) The roots of neo-liberal resilience: Explaining continuity and change in background ideas in Europe's political economy, British
Journal of Politics and International Relations, 18(2), pp 318-334, DOI 10.1177/1369148115612792
Sydney Morning Herald, Call to keep Aged Care Assessments with public health experts, downloaded from
https://www.smh.com.au/politics/federal/call-to-keep-aged-care-assessments-with-the-public-health-experts-20210906-p58p6x.html)
Scottish Human Rights Commission (2019) Care and Rights (2019), What are human rights? Downloaded from
http://careaboutrights.scottishhumanrights.com
Sinclair, C., Field, S., & Blake, M. (2018). Supported decision-making in aged care: A policy development guideline for aged care providers in
Australia. (2nd Edition) Sydney: Cognitive Decline Partnership Centre downloaded from
https://cdpc.sydney.edu.au/research/planning-decision-making-and-risk/supported-decision-making/)
Thelen, K. (1999). Historical Institutionalism in Comparative Politics. Annual Review of Political Science, 2, 369-404.

References
Royal Commission into Aged Care Quality and Safety (2019), Interim Report, downloaded from
https://agedcare.royalcommission.gov.au/publications/interim-report
Royal Commission into Aged Care Quality and Safety (2021), Final Report: Care, Dignity and Respect, downloaded from
https://agedcare.royalcommission.gov.au/
World Health Organisation (2021) Decade of Healthy Ageing 2021- 203, downloaded from
https://www.who.int/initiatives/decade-of-healthy-ageing
United Nations, (2020) Policy Brief: The Impact of COVID on Older Persons downloaded from
https://www.un.org/development/desa/ageing/news/2020/05/covid-19-older-persons/
United Nations, Sustainable Development Goals, downloaded from https://sdgs.un.org/goals
United Nations Convention on the rights of persons with disabilities downloaded from
https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
15 September 2021
Consulting
35

Thank You
More Information
www.carriehayter.com
@carriehayter
carrie@carriehayter.com
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