Consumer choice, ageism and human rights a perfect storm

Consumer choice, human rights and ageism–
A perfect storm?
Carrie Hayter
Managing Director
Carrie Hayter Consulting
AAG Webinar
Dignity of risk - The right of older people to choose
24 March 2020
1
Nothing about us without us www.carriehayter.com

Introduction
• Explore the tension between consumer choice, human rights
and ageism
– Framing of debates of the COVID 19 pandemic and older people
• Why we need a human rights approach for aged care services
in Australia?
• Implications for older people, researchers, policy makers and
practitioners
24 March 2020 2

Carrie Hayter Consulting
24 March 2020 3
Empowering people
who use social care to
be in charge of their
funding and supports
Empowering older
people, people
with disability and
their allies to have
great lives

Source: www.covid19data.com 4
COVID 19 diagnoses in Australia as at 23 March 2020

5
Source: https://www.theaureview.com/travel/bondi-beach-has-been-closed-due-to-covid-19-and-
selfishness/

Source: https://aboutregional.com.au/wp-content/uploads/2020/03/Covid-banner-1024x485-e1584664950872-
810x478.jpg
6

7
95-years-old Italian Grandma recovers from Coronavirus
Source: https://www.wetheitalians.com/from-italy/95-years-old-italian-grandma-recovers-
coronavirus?fbclid=IwAR3jvp6hrWFUJH79jXjTFeGNpCjLdNIv0uru3y_R2Khwkr3nHrd8r8E992U

What is Ageism?
“Discrimination and stereotyping on the basis of
a person’s age” (Applewhite, 2016, pg 8)
Discrimination against our future selves.
Every Age Counts Campaign
A campaign to tackle ageism faced by older
Australians
https://www.everyagecounts.org.au/
24 March 2020 8

Ageism and COVID 19
“If anything is going to hurt the world, it is moral
decay. And not taking the death of the senior
citizens as a serious issue is moral decay…Any
individual matters, whatever age, any human
being matters”
Chief, World Health Organisation
Source: https://www.forbes.com/sites/patriciagbarnes/2020/03/13/did-us-response-
to-covid-19-lag-due-to-age-discrimination/#432578dd1784
24 March 2020 9Nothing about us without us www.carriehayter.com

British Society of Gerontology and
COVID 19
“We urge the Government to reject the formulation and
implementation of policy based on the simple application of
chronological age. We also call on government and media
organisations to be cautious in their use of language. It is
essential that we continue to foster generational and societal
cohesion during the course of the pandemic. …..Only by bringing
the generations together in this time of crisis can we ensure that
the least damage is done to people living in the UK and other
countries”
Source: British Society of Gerontology downloaded from https://www.britishgerontology.org/DB/latest-
news/press-release-from-british-society-of-gerontology-20-march-2020
24 March 2020 10Nothing about us without us www.carriehayter.com

Paradox of Choice
Human Rights Perspective
• Empowerment
• Response to failures of
welfare states in
meeting individual
needs
• Consumer rights/
citizenship movements
(Moffatt et al, 2012, Clark,
2007)
Neo-liberal Economic
Perspective
• Choice as agency for
individuals
• Efficiency and
effectiveness
• Rational actors
choosing and arranging
care (Greener, 2008)

Choice and Control
• People can be paralysed by choice, the paradox of choice
(Schwartz, 2004)
• Choosing an aged care provider is an emotional and social
process (Baxter and Glendenning, 2013, Hillcoat – Nalletamby,
2017, Moffat at al 2012)
• Decision making processes a complex interdependence
between older people, their friends, families and/or carers
(Petriwskyj, Gibson & Webby, 2015)
• Positioning older people as ‘consumers’ or rational choosers
oversimplifies the complexity of choice
12

Ageism and Aged Care policy in
Australia
24 March 2020 13
• Is it ageist to have a separate ‘aged care system’ when many
people across the life course need support?
• Why don’t we have a social care insurance scheme for all people
across the life-course in Australia?
• Why is deinstitutionalisation of residential aged care not on the
reform agenda?
– Older people as ‘other’

24 March 2020 14
UN Convention on the Rights of
People with Disability
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
People with Disability
Influences the framing and shaping of policy and
legislation for people with disability in Australia:
• Objects and Principles of the National
Disability Insurance Scheme Act 2013
• The Disability Inclusion Act
– Disability Inclusion Action plans for government
and public sector organisations
24 March 2020 15

16
Human rights create rights and
duties
Respect
Protect
Fulfill
The duty to respect means that states must not
act to interfere with the enjoyment of human
rights.
The duty to protect requires states to ensure that
others do not infringe or block access to human
rights.
The duty to fulfil means that states must take
positive action to facilitate the better enjoyment of
human rights.
(Source: Care and Rights (2019), What are human rights? Downloaded from
http://careaboutrights.scottishhumanrights.com)

Why a Convention on the rights of
older people?
• codify the rights of older persons in one single document
• 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
• generate clarity and guidance with which civil society can work alongside the
government to implement
• increase visibility of older persons in societies
• encourage structural changes and shifts in perception of ageing, guide policy
change and provide the basis for advocacy
• raise public awareness in respect of older persons’ rights
• create societies and environments for all ages, where older persons are able to
contribute, prosper and enjoy their rights.
(source Global Alliance for the Rights of Older People downloaded from
https://rightsofolderpeople.org/faq-strengthening-older-persons-rights-worldwide/
24 March 2020 17

A human right-based approach –
PANEL Principles
• Participation – People should be active participants in how their support
and care is received and provided
• Accountability- Accountability requires effective monitoring of human
rights standards as well as effective remedies for human rights breaches.
• Non-discrimination and equality - all forms of discrimination in the
realisation of rights must be prohibited, prevented and eliminated.
• Empowerment - individuals and communities should know their rights.
• Legality - recognition of rights as legally enforceable entitlements and is
linked in to national and international human rights law.
(Source: Scottish Human Rights Commission
http://www.scottishhumanrights.com/rights-in-practice/human-rights-based-
approach)
24 March 2020

19
Human Rights and Aged Care in Australia –
Are we there yet?
Source: https://www.agedcarequality.gov.au/

Royal Commission into Aged Care
Quality and Safety
• Compassionate care and support for older people
• Policy mechanisms to enable choice adapted since the Aged
Care Roadmap are being questioned:
– Who has benefited?
– Who has not benefited?
• The role of ageism needs further in-depth exploration (Every
Age Counts, 2019)
20Nothing about us without us www.carriehayter.com

21
• Aged Care Charter of Rights, National Plan of Action
to Respond to the Abuse of Older Australians (Elder
Abuse) 2019-2023, Supported Decision Making
Framework (Sinclair et al, 2018)
– Embedding and translating into practice for all aged care
services
– How older people and their allies understand and use
these frameworks
Human Rights and Aged Care in Australia –
Are we there yet?

Implications –
Older people and allies
• Activism and sharing lived experiences
– Moving beyond consumers to citizens with political rights
• COVID 19 pandemic
– Challenge the framing and reporting of the pandemic
– Intergenerational response based on citizenship not just
on economic concerns
– Individual acts will create collective benefits
– The Kindness Pandemic – Dr Catherine Barrett
https://www.facebook.com/groups/515507852491119/
24 March 2020 22

Implications - Researchers
• Explore the complexity of choice and agency for older people
• How is ageism reinforced and reproduced in the aged care
system?
• How could human rights instruments change how we design
and deliver support to older people in Australia?
– Human rights of people living with dementia (Steele,
Swaffer, Phillipson & Fleming et al 2019)
• What lessons will we learn from the COVID 19 pandemic?
24 March 2020 23

Implications – Policy Makers
• Public awareness campaign on ageism and it’s impacts
• Review the principles of the Aged Care Act 1997
– Human rights-based principles like the National Disability
Insurance Scheme
• Support a UN Convention on the rights of older people
• Examine the evidence and engage researchers and people
with lived experience in policy making
• AAG and members have leadership role in challenging ageism
during the COVID 19 pandemic
24 March 2020 24

Implications - Practitioners
• How can we lead adaptive and cultural change in aged care services?
– Who is in your holding environment to support you in this challenging
times?
– Pandemic risk plan, test, retest and revise and reach out for support
• Challenging our unconscious bias
– Language Radar – challenging ageist language and attitudes
24 March 2020

Implications - Practitioners
FAIR approach to human rights
• Facts: What is the experience of the individuals involved and what are the
important facts to understand?
• Analyse Rights: Develop an analysis of the human rights at stake
• Identify responsibilities: Identify what needs to be done and who is
responsible for doing it
• Review actions: Make recommendations for action and later recall and
evaluate what has happened as a result.
(Source: Scottish Human Rights Commission, Care and Rights (2019), What are human rights? Downloaded
from http://careaboutrights.scottishhumanrights.com)
24 March 2020

Navigating the storm
27

References
Applewhite, A., (2016) This Chair Rocks – A Manifesto Against Ageism, Celdon Books, New York
Attorney- General (2019) National Plan to Respond to the Abuse of Older Australians (Elder Abuse), Australian Government
downloaded from https://www.ag.gov.au/RightsAndProtections/protecting-the-rights-of-older-australians/Documents/National-
plan-to-respond-to-the-abuse-of-older-australians-elder.pdf
Baxter, K., & Glendenning, C. (2013). The Role of Emotions in the Process of Making Choices about Welfare Services: The
Experiences of Disability People in England Social Policy & Society, 12(3), 439-450
Clarke, Newman, J., Smith, N., Vidler, E., & Westermarland, L. (2007). Creating Citizen- Consumers, Changing Publics and Changing
Public Services. London: Sage.
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
COVID 19 data www.covid19data.com
Every Age Counts, Submission to the Royal Commission into Aged Care Quality and Safety downloaded from
https://www.everyagecounts.org.au/submissions
Every Age Counts Campaign
https://www.everyagecounts.org.au/
Greener, I. (2008). Choice and Voice – A Review. Social Policy and Society, 7(02), 255-265. doi:doi:10.1017/S1474746407004204
Global Alliance for the Rights of Older People
ttps://rightsofolderpeople.org/faq-strengthening-older-persons-rights-worldwide/
Nothing about me without me
www.carriehayter.com

References
Hillcoat - Nalletamby, S. (2017). Pathways to choice of care setting. Ageing & Society, 1-30.
doi:10.1017/S0144686X17000940
Moffat, S., Higgs, P., Rummery, K., & Ree Jones, I. (2012). Choice Consumerism and Devolution: Growing Old in
the Welfare States of Scotland, Wales and England Ageing and Society, 32(5), 1-22.
Petriwskyj, A., Gibson, A., & Webby, G. (2015). Staff members' negotiation of power in client engagement:
Analysis of practice within an Australian aged care service. Journal of Aging Studies, 33, 37.
Schwartz, B. (2004). The paradox of choice - When more is less? New York: Harper Collins Publishers.
Steele, L., Swaffer, K., Phillipson, L., & Fleming, R. (2019). Questioning Segregation of People Living with
Dementia in Australia: An International Human Rights Approach to Care Homes. Laws, 8(3), 18.
https://doi.org/10.3390/laws8030018
Scottish Human Rights Commission (2019) Care and Rights What are human rights? Downloaded from
http://careaboutrights.scottishhumanrights.com/
Sinclair C, Field S, Williams K, Blake M, Bucks R, Auret K, Clayton J, Kurrle S. Supporting decision-making: A
guide for people living with dementia, family members and carers. Sydney: Cognitive Decline Partnership
Centre, 2018. download from https://cdpc.sydney.edu.au/research/planning-decision-making-and-
risk/supported-decision-making/
Nothing about me without me

More Information
Human Rights and Older People online Workshop –
May 2020
https://www.carriehayter.com/store/product/human-
rights-and-older-people-online-course
@carriehayter

Consumer choice, ageism and human rights a perfect storm

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