Co production with older people in residential aged care final

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

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• 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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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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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

1 May 2023 11Nothing about me without me www.carriehayter.com

1 May 2023 © Carrie Hayter Consulting 12

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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)


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)


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


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


http://www.dementiaallianceinternational.org/

http://www.wavertonhub.com.au/



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



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


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



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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



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?


Step Four – Empower and educate your front-

line staff

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Step Five– Foster a culture of reflective

practice and passionate curiosity


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Step Six – Reflect on your journey through

research


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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http://myhomelife.org.uk/



http://www.homecaretoday.org.au/

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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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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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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https://fightdementia.org.au/about-dementia/resources/dementia-language-guidelines

https://fightdementia.org.au/about-dementia/resources/dementia-language-guidelines

https://nsw.fightdementia.org.au/nsw/news/the-benefits-of-physical-activity-and-exercise-for-people-living-with-dementia

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

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

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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https://kateswaffer.com/

https://kateswaffer.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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http://www.scie.org.uk/publications/briefings/briefing31/

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


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




http://www.who.int/features/2015/dutch-community-living/en/



http://www.homecaretoday.org.au/

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Co production with older people in residential aged care final

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