Download pptx - Nothing about us without us - older citizens and their allies co-producing community care

Nothing about us without us – older citizens and their allies co-producing community care

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Community Care SymposiumAged and Community Services SA & NT

Adelaide 21 October 2016

Nothing about me without me www.carriehayter.com

Purpose • Changing landscape of aged care

– Co-production as a framework for working with older citizens and their allies

• Challenges and opportunities – Six key steps for service providers

• Implications for policy and research

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Carrie Hayter Consulting

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Empowering people who use social care to be in charge of their funding and supports

Methodology

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• Work with over 300 aged care and disability services across Australia– People with disability, older people and their allies

• Advocate and service user– Father and grandfather

• PhD research

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Shifting Policy Landscape –Personalisation

Passive Clients

Active Citizens

Block funding Individualised

funding

Rigid inflexible, bureaucratic

services

Flexible responsive services


7Nothing about me without me www.carriehayter.com

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Wellness and reablement with 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

Personhood ‘Consumer’ or ‘Customer’ 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

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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)


Older people and citizens co-producing community care

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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 and have agency and control


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Co-production as ‘working together’


Community West and COTA

Step Forward Together Project

https://www.communitywest.com.au/cw-resources/co-production



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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)

• Time, commitment to cultural change and resources (Community West, 2016)



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


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Active Ageing Conference © Carrie Hayter Consulting 24

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 people

who use services (Petriwsky et al, 2015)• Create structures for engagement and

participation– What support do people need to participate?– Governance structures, roles and responsibilities

(Joyner, 2015)

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Engagement and Participation • External facilitators

– Taste Buddies (Baur et al, 2012)• Peer to peer mentoring• Resources and time (Community West, 2016)


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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 & Research Implications • Resourcing to support systemic change

– Innovation fund to kick start initiatives– www.homecaretoday.org.au

• Research – Engagement and participation of older people and allies

• Is it about agency and control rather than choice?– What does engagement and participation mean for different

communities?• What supports and structures are needed for engagement and

participation?


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

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Conclusion • Start with small steps

– Create structures to support engagement and participation• Build connections and relationships with older people, staff

and their families• 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• Research

– Active participants

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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

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

Community West (2016) Community West. (2016). Co-producing Aged CareServices with a Wellness Focus, Community West downloaded from https://www.communitywest.com.au/cw-resources/co-production


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

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

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.

Joyner, S. (2015). Consumer and Community Engagement Model: An outcome of the WentWest–Health Consumers NSW Joint Consumer Engagement Project. Sydney Wentwest, Health Consumers NSW downloaded from http://www.hcnsw.org.au/data/Resources/2015_07_17_Final_report_and_template.pdf

Kate Swaffer’s Blog https://kateswaffer.com/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.

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http://www.hcnsw.org.au/data/Resources/2015_07_17_Final_report_and_template.pdf

http://www.hcnsw.org.au/data/Resources/2015_07_17_Final_report_and_template.pdf

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

www.homecaretoday.org.au


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

More SkillsRegister for a Co-production with Older People

Masterclass on 2 December 2016 http://www.agedcommunity.asn.au/event/co-production-with-older-people-two-masterclasses/

www.carriehayter.com@carriehayter


http://www.agedcommunity.asn.au/event/co-production-with-older-people-two-masterclasses/

http://www.agedcommunity.asn.au/event/co-production-with-older-people-two-masterclasses/

http://www.carriehayter.com/