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Nothing about us without us – older citizens and their allies
co-producing residential services
1 May 2023 1
Better Practice ConferenceAustralian Aged Care Quality Agency
Melbourne Friday 3 June 2016
Nothing about me without me www.carriehayter.com
Purpose • Changing landscape of aged care
– Older people as citizens of residential services– Co-producing residential services with older
citizens and their allies• Challenges and opportunities
– Six key steps • Implications for policy and research
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About Carrie Hayter Consulting
1 May 2023
Putting people who use social care at the centre of their supports and funding
– Research – Education & Training – Public Speaking – Writing
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Methodology
1 May 2023
• PhD research • Work with over 200 aged care and disability
services across Australia– People with disability, older people and their allies
• Advocate and service user– Father and grandparents
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01/05/2023 5
Shifting Policy Landscape –Personalisation
Passive Clients
Active Citizens
Block funding Individualised
funding
Rigid inflexible, bureaucratic
services
Flexible responsive services
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Wellness and Older People– Improved health and wellbeing for older people
(Lewin at al, 2013, Parsons et al, 2013)– Reduces people’s dependence on paid supports (King
& Parsons, et al 2012, Lewin & Alfonso 2013, Lewin & De San Miguel, 2013)
– Benefits of physical exercise for people with dementia (Alzheimer’s Australia NSW 2014, Henwood and Neville, 2014)
– Engaging carers and service users in their reablement and wellness (Wilde & Glendenning, 2012)
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Nothing about me without me www.carriehayter.com
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Social Model of Support Swaffer 2016
Diagnosis/ confirmation of diagnosis
Assessments (eg Driving, medication occupational therapy )
Rehabilitation
Strategies to manage and support disabilities (eg
technology, buddy/mentor)
Advanced Care Directives
Continued meaningful
engaging activities
Source: Swaffer, K., (2016:165) What the hell happened to my brain? Jessica Kingsley Publishers, London and Phiiladelphia
Support for a terminal progressive chronic
disease
Aged Care
Charter of Rights for people with dementia
PANEL Principles (Scotland 2009)Participation in decisions which affect their human rights Accountability of those responsible for the respect, protection and fulfilment of human rightsNon discrimination and equalityEmpowerment to know their rights and how to claim them Legality in all decisions through an explicit link with human rights legal standards in all processes and outcome measurements
Source: Dementia Alliance International (2016) Human Rights for People living with Dementia – Rhetoric to Reality downloaded from http://www.dementiaallianceinternational.org/wp-content/uploads/2016/05/Human-Rights-for-People-Living-with-Dementia-Rhetoric-to-Reality.pdf
9Nothing about me without me www.carriehayter.com
Personhood ‘Consumer’ as
Purchaser Citizen
Social and political rightsEconomic
purchasing power
Relationship between client and
professional
Client Citizen – Consumer
Agency
Mechanisms for enacting ‘choice’ and ‘voice’
Market mechanisms via competition
(LeGrand, 2007)
Managing self interest
(LeGrand, 2007) and voice
mechanisms
Enable ‘choice’ through ‘voice’ mechanisms
(Simmons et al 2011)
Hybrid Choice and
voice mechanism
s
Older people living in residential care – customers, consumers or citizens?
• Limited choice for people • Ethics of care (Tronto, 1993, 2010, Barnes,
2012) beyond customers to citizens– Caring dyad between older people, their family or
the staff working with them – Interdependency and relationality – Well-being and social justice
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1 May 2023 © Carrie Hayter Consulting 12
13Nothing about me without me www.carriehayter.com
1 May 2023 14
Coercing
Educating
Informing
Consulting
Engaging
Co-designing
Co-Producing
Co-delivery
Co-Ownership
Ladder of Participation and Engagement
Doing for
Doing to
Doing With
Doing for themselves
Adapted form Think Public, 2015
Consumer Directed Care?
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Technical Problems or an Adaptive Leadership Challenge?
Technical problems are well defined.
Their solutions are known and those with adequate expertise and organisational capacity can solve them.
(Heifetz & Linksy, 2002)
Adaptive leadership challenges are entirely different. The challenge is complex
and not so well defined; and the answers are not known in advance
Problems that require us to learn new ways (Heifetz & Linksy, 2002)
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Co-production with citizens using residential services
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Source: downloaded from http://www.scarletdt.com/wp_WWNT/co-production/what-is-co-production/
People who use services collaborate in their production (Needham et al, 2009)
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Principles underpinning co-production
• Active participation of people who use services (Needham & Carr, 2009)– Identification of issues and involving people in solutions
• Using the assets of people who use services to improve services (Needham and Carr, 2009)
• Mutual self-help between people who use services or have shared common interests (Boyle et al, 2006)
• Services as ‘enablers’ and not fixers
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What is not Co-Production?• Consultation and engagement• Involvement in design without participation in
the solutions • Individualised budgets
– People need to be involved in the solutions through agency and control
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Co-production as transformation
www.wavertonhub.com.au https://www.youtube.com/watch?
v=oAchY7giXRo
Nothing about me without me www.carriehayter.com
http://www.dementiaallianceinternational.org/
Critiques of co-production • Downplays power imbalances between service users
and services (Barnes, 2009, Beresford, 2009, Ottman, 2011)
• Reproduce power imbalances and inequality (Needham & Carr, 2009)
• Significant institutional and staff resistance (Needham & Carr, 2009)
• Changing the role of the state, privatisation and marketisation of aged care
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21Nothing about me without me www.carriehayter.com
Step One – Start with why,
engage people in the issues and the solutions
Source: Simon Sinek Ted video – start with why https://www.ted.com/talks/simon_sinek_how_great_leaders_inspire_action?language=en
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Step Two – Build connections and relationships
with people and their allies
Nothing about me without me www.carriehayter.com
Active Ageing Conference © Carrie Hayter Consulting 23Source: Helen Sanderson & Associates www.
http://www.helensandersonassociates.co.uk
Active Ageing Conference © Carrie Hayter Consulting 24Source: Adapted from Helen Sanderson & Associates www.
http://www.helensandersonassociates.co.uk/
The people in my life
Active Ageing Conference © Carrie Hayter Consulting 25Source: Adapted from Helen Sanderson & Associates www.
http://www.helensandersonassociates.co.uk/
Active Ageing Conference © Carrie Hayter Consulting 26Source: Adapted from Helen Sanderson & Associates www.
http://www.helensandersonassociates.co.uk/
Active Ageing Conference © Carrie Hayter Consulting 27Source: Adapted from Helen Sanderson & Associates www.
http://www.helensandersonassociates.co.uk/
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Step Three – Create a culture of engagement
and participation Nothing about me without me www.carriehayter.com
Engagement and Participation • Power imbalance between staff and residents
(Petriwsky et al, 2015)• Access to independent advocacy• Create structures for engagement and
participation– Small groups– What support do people need to participate?
1 May 2023 29Nothing about me without me www.carriehayter.com
Engagement and Participation • External facilitators
– Engage people to identify issues and be involved in the solutions
– Taste Buddies (Baur et al, 2012)– Shopping Cart (Helping Hand, 2014)
• Peer to peer mentoring– Connecting residents and older people who are
volunteers
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Passion, Fun and Spirit
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Reflective Practice
What stops you?How can we change
this?
Your Organisation/
Team
Shared understanding and
conversations
Start with why?
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Step Four – Empower and educate your front-
line staff
1 May 2023 33
Step Five– Foster a culture of reflective
practice and passionate curiosity
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Active Ageing Conference © Carrie Hayter Consulting 34Source: Adapted from Helen Sanderson & Associates www.
http://www.helensandersonassociates.co.uk/
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Step Six – Reflect on your journey through
research
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Policy Implications • De-institutionalisation
– Small groups of intentional communities– Green care farms for people living with dementia– Home Share Schemes
• Resourcing to support systemic change– Innovation fund to kick start initiatives– http://myhomelife.org.uk– www.homecaretoday.org.au
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Research Implications – Engagement and participation of older people and
allies living in residential services • Is it about agency and control rather than choice?
– What does engagement and participation mean for different communities?
• Understanding the complexities of the caring dyad• Beyond the consumer or customer to an ethics of care,
social justice and wellbeing
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Nothing about me without me www.carriehayter.com
Conclusion • Start with small steps
– Engage people in issues and solutions– Create structures to support engagement
• Build connections and relationships with older people, staff and their families– Spirit, fun and love
• Empower, educate and get behind your front-line staff – What stops you? How can we change this?
• Adaptive leadership challenge– Time, patience, reflection and resources– Anchors to support you
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Nothing about me without me www.carriehayter.com
References and Resources Alzheimers’ Australia Dementia Language Guidelines downloaded from https://fightdementia.org.au/about-dementia/resources/dementia-language-guidelines
Alzheimer's Australia NSW. (2014) The Benefits of Physical Activity for People living with Dementia, Sydney, Alzheimer's Australia NSW downloaded from https://nsw.fightdementia.org.au/nsw/news/the-benefits-of-physical-activity-and-exercise-for-people-living-with-dementia
Alzheimer’s Scotland, (2009). Charter of Rights for People with Dementa and their Carers in Scotland. htp://www.dementarights.org/charter-of-rights/
Australian Government Department of Social Services (2015) Living Well at Home: CHSP Good Practice Guide, pg 11-13, downloaded from https://www.dss.gov.au/our-responsibilities/ageing-and-aged-care/aged-care-reform/commonwealth-home-support-programme/living-well-at-home-chsp-good-practice-guide
Baur, V., & Abma, T., (2012) “The Taste Buddies’: participation and empowerment in a residential home for older people, Ageing and Society, Vol 32. pp 1055-1078
Boyle et al, (2006) Aspects of co-production: implications for work, health and volunteering, London: New Economics Foundation Bryden, C., (2015) Nothing about us without us ! 20 years of dementia advocacy , Jessica Kingsley Publishers
Barnes, M. (2009). Authoritative Consumers or Experts by Experience? User Groups in Health and Social Care In R. Simmons, Powell, M., & Greener, I., (Ed.), The Consumer in Public Services, Choice, Values and Difference, . Bristol: The Policy Press
Barnes, M., (2012) Care in everyday life: An ethic of care in practice, Bristol: Policy Press
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References and Resources Beresford, P. (2009). Differentiated Consumers? A Differentiated View from a Service User Perspective In R. Simmons, Powell, M., & Greener, I., (Ed.), The Consumer in Public Services, Choice, Values and Difference
Kate Swaffer’s Blog https://kateswaffer.com/
Heiftez, R., & Linksy, M. (2002). Leadership on the Line - Staying Alive through the Dangers of Leading Boston, Massachusetts: Harvard Business Review
Henwood, T., & Neville, C. (2014 ). Exploring the effect of aquatic exercise on behaviour andpsychological well-being in people with moderate to severe dementia: A pilot study of the Watermemories Swimming Club. Australasian Journal on Ageing, 33(2), 124-127.
King, A., M. Parsons, et al. (2012). "Assessing the impact of a restorative home care service in New Zealand: A cluster randomised controlled trial." Health and Social Care in the Community 20(4): 365-374.
Equalities and Human Rights Commission, (2009). The United Nations Convention on the Rights of People with Disabilities: What Does it Mean for You? London: Equalities and Human Rights Commission. htps://www.equalityhumanrights.com/en/publicatondownload/united-natons-conventon-rights-people-disabilites-what-does-it-meanyou-easy
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Nothing about me without me www.carriehayter.com
References and Resources Le Grand (2007) The Politics of Choice and Competition The Political Quarterly, 78(2), 207-213.
Lewin, G., & Vandermeulen, S. (2010). A non-randomised controlled trial of the Home Independence Program (HIP): an Australian restorative programme for older home-care clients. Health & Social Care in the Community, 18(1), 91-99. doi: 10.1111/j.1365-2524.2009.00878.x
Lewin, G. F., H. S. Alfonso, et al. (2013). "Evidence for the long term cost effectiveness of home care reablement programs." Clinical interventions in Aging 8: 1273-1281.
Lewin, G., K. De San Miguel, et al. (2013). "A randomised controlled trial of the Home Independence Program, an Australian restorative home-care programme for older adults." Health & Social Care in the Community 21(1): 69-78.
Mental Health Foundation, (2015). Dementia, rights and the social model of disability: A new direction for policy and practice? London: Mental Health Foundation Policy Discussion Paper. htps://www.mentalhealth.org.uk/publicatons/dementa-rights-andsocial-model-disability
Needham, C. and Carr, S., (2009). Co-production: an emerging evidence base for adult social care transformation In Social Care Institute for Excellence (Ed.). United Kingdom Social Care Institute for Excellence downloaded from http://www.scie.org.uk/publications/briefings/briefing31/
Ottmann, G., Laragy, C., Allen, J., & Feldman, P. (2011). Coproduction in Practice: Participatory Action Research to Develop a Model of Community Aged Care. Systemic Practice and Action Research, 24(5), 413-427. doi: 10.1007/s11213-010-9181-5 http://dx.doi.org/10.1007/s11213-011-9192-x
Parsons, J. G. M., N. Sheridan, et al. (2013). "A Randomized Controlled Trial to Determine the Effect of a Model of Restorative Home Care on Physical Function and Social Support Among Older People." Archives of Physical Medicine and Rehabilitation 94(6): 1015-1022.
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References and Resources 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, Vol 33, pp 37-46
Ryburn, B., Wells, Y., & Foreman, P., (2009) Enabling Independence: Restorative Approaches to Home Care Provision for Frail Older Adults, Health and Social Care in the Community, Volume 17 (3), pp 225- 234, see pg 22
Rahman, S. (2015). Living better with dementia: good practce and innovaton for the future. London: Jessica Kingsley.
Senior, H. E. J., M. Parsons, et al. (2014). "Promoting independence in frail older people: A randomised controlled trial of a restorative care service in New Zealand." Age and Ageing 43(3): 418-424.
Simmons, R. (2011). Leadership and Listening: The Reception of User Voice in Today's Public Services. Social Policy & Administration, 45(5), 539-568. doi: 10.1111/j.1467-9515.2011.00790.x
Simon Sinek Ted video – start with why https://www.ted.com/talks/simon_sinek_how_great_leaders_inspire_action?language=en
Swaffer, K., (2016) What the hell happened to my brain? Living beyond dementia, Jessica Kingsley Publishers, London and Philadelphia
42Nothing about me without me www.carriehayter.com
References and Resources Simmons, R. (2011). Leadership and Listening: The Reception of User Voice in Today's Public Services. Social Policy & Administration, 45(5), 539-568. doi: 10.1111/j.1467-9515.2011.00790.x
Tronto, J.C., (1993) Moral Boundaries: A political argument for an ethic of care, New York: Routledge
Tronto, J.C., (2010) Creating caring institutions: Politics, plurality and purpose, Ethics and Social Welfare. 4(2), 158-171
Wilde, A., & Glendinning, C. (2012). ‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home-care re-ablement services. Health & Social Care in the Community, no-no. doi: 10.1111/j.1365-2524.2012.01072.x
http://myhomelife.org.ukhttp://www.who.int/features/2015/dutch-community-living/en/www.homecaretoday.org.au
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