Nothing about us without us - older citizens and their allies co-producing community care
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Paper presented at the ACS SA & NT Community Care Symposium
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Nothing about us without us - older citizens and their allies co-producing community care
- 1. Nothing about us without us – older citizens and their allies co-producing community care 20 October 2016 1 Community Care Symposium Aged and Community Services SA & NT Adelaide 21 October 2016 Nothing about me without me www.carriehayter.com
- 2. 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 2 Nothing about me without me www.carriehayter.com
- 3. Carrie Hayter Consulting 20 October 2016 3 Nothing about me without me www.carriehayter.com Empowering people who use social care to be in charge of their funding and supports
- 4. Methodology 20 October 2016 • 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 4 Nothing about me without me www.carriehayter.com
- 5. 20 October 2016 Active Ageing Conference © Carrie Hayter Consulting 5
- 6. Shifting Policy Landscape – Personalisation Passive Clients Active Citizens Block funding Individualised funding Rigid inflexible, bureaucratic services Flexible responsive services 20/10/2016 6 Nothing about me without me www.carriehayter.com
- 7. 7 Nothing about me without me www.carriehayter.com
- 8. 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) 8 Nothing about me without me www.carriehayter.com
- 9. 9 Nothing about me without me www.carriehayter.com
- 10. 10 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
- 11. 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
- 12. 20 October 2016 © Carrie Hayter Consulting 12
- 13. 20 October 2016 13 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?
- 14. 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) 14 Nothing about me without me www.carriehayter.com
- 15. Older people and citizens co- producing community care 15 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) Nothing about me without me www.carriehayter.com
- 16. 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 16Nothing about me without me www.carriehayter.com
- 17. 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 17Nothing about me without me www.carriehayter.com
- 18. 18 Co-production as ‘working together’ Nothing about me without me www.carriehayter.com Community West and COTA Step Forward Together Project https://www.communitywest.com. au/cw-resources/co-production
- 19. 19 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.dementiaallianceinternat ional.org/
- 20. 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) 20Nothing about me without me www.carriehayter.com
- 21. 21 Nothing 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
- 22. 22 Step Two – Build connections and relationships with people and their allies Nothing about me without me www.carriehayter.com
- 23. Active Ageing Conference © Carrie Hayter Consulting 23
- 24. Active Ageing Conference © Carrie Hayter Consulting 24
- 25. The people in my life 20 October 2016 Active Ageing Conference © Carrie Hayter Consulting 25
- 26. 20 October 2016 Active Ageing Conference © Carrie Hayter Consulting 26
- 27. 20 October 2016 Active Ageing Conference © Carrie Hayter Consulting 27
- 28. 28 Step Three – Create a culture of engagement and participation Nothing about me without me www.carriehayter.com
- 29. 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) 20 October 2016 29Nothing about me without me www.carriehayter.com
- 30. Engagement and Participation • External facilitators – Taste Buddies (Baur et al, 2012) • Peer to peer mentoring • Resources and time (Community West, 2016) 30Nothing about me without me www.carriehayter.com
- 31. 31 Reflective Practice What stops you? How can we change this? Your Organisation/ Team Shared understanding and conversations Start with why? Nothing about me without me www.carriehayter.com Step Four – Empower and educate your front- line staff
- 32. 20 October 2016 32 Step Five– Foster a culture of reflective practice and passionate curiosity Nothing about me without me www.carriehayter.com
- 33. 20 October 2016 Active Ageing Conference © Carrie Hayter Consulting 33
- 34. 34 Step Six – Reflect on your journey through research Nothing about me without me www.carriehayter.com
- 35. 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? 35 Nothing about me without me www.carriehayter.com
- 36. 36
- 37. 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 37 Nothing about me without me www.carriehayter.com
- 38. 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 Care Services with a Wellness Focus, Community West downloaded from https://www.communitywest.com.au/cw-resources/co-production 38 Nothing about me without me www.carriehayter.com
- 39. 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 and psychological 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. 20 October 2016 39 Nothing about me without me www.carriehayter.com
- 40. 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. 40 Nothing about me without me www.carriehayter.com
- 41. 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 41 Nothing about me without me www.carriehayter.com
- 42. 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 42 Nothing about me without me www.carriehayter.com
- 43. More Skills Register 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 43 Nothing about me without me www.carriehayter.com
Editor's Notes
- I would like to acknowledge the traditional owners of the land who we meet on today and pay my respects to Elders, past and present. I would also like to acknowledge my Aboriginal colleagues who are here today. I would like to thank the Australian Aged Care Quality Agency for the opportunity to present this paper today
- I am the Managing Director of Carrie Hayter Consulting that works will all actors in the social care system to put people at the centre of their supports and funding. We do this through our research, evaluation, education programs, public speaking and writing.
- This paper is based on my PhD research as well as the consulting work I have undertaken with over 200 aged care and disability service agencies across Australia. This also includes working with older people and their allies. It is also based on my reflections as an advocate and service user for my father and grandparents in their journey through the aged care system.
- There are significant changes happening in the policy landscape in age care and disability policy in Australia as part of the agenda of personalisation. The assumptions that underpin these shifts include the changing role of people who use public services shifting from being ‘passive’ clients to ‘active consumers’. It is assumed that people who use disability services or aged care services will become active ‘consumers’. Rather than being passive clients relying on professionals for support and advice people are assumed to be active engaged ‘consumers’ who will make informed choices about their care. Flowing from this assumption is the need for changes in the how agencies are funded from block funded to individually funded. It is assumed that individualised funding will provide more mechanisms for service users to get their needs met. However I am not so sure that the scale of reforms we are seeing in the community are what we are seeing in residential aged care in this country. I think there are pockets of innovation but I still think that we have a long way to go to see people as citizens living in a residential community. The changing external landscape is such that residential aged care services need to rethink their models and how they view and engage with older people and their allies
- I think it is important to reflect on the history of the aged care system. The reforms being implemented are probably the most significant since the One of the other challenges is that the aged care system was largely created in the interests of professionals, government and providers. In the past older people were seen but not heard, ageing was seen as a sickness and people were slotted into services mainly institutionally based services and not given access to any rehabilitation because they were older people. We still see large numbers of people living with dementia in institutions in dementia specific wings and it is assumed that most people living with dementia will eventually be supported in a nursing home. We don’t always see the right environments for people living beyond dementia to age well including the creation of dementia friendly communities. Since the mid 1990s were the emergence of the concept of active ageing and the rights of older people we are seeing shifts. These shifts are also driven by the perceived economic costs of ageing framed within a human rights perspective. However, the way in which we support people with dementia has not necessarily been framed from an active ageing perspective? At the same time we have seen the growth and emergence of community care with policies stating that older people should have choice and control over their support.
- There is an emerging evidence base for wellness and re-ablement for older people in that it can improve the health and wellbeing of older people, it can reduce the dependence of people on paid supports. Research identifies the benefits of physical exercise for people living with dementia. We know it can increase the mood and wellbeing of people living with dementia
- People living with dementia, particularly people living with younger onset dementia are advocating for the way that we think about people living with dementia moving away from a prescribed disengagement to a social model of support. Kate Swaffer’s book – what the hell happened to my brain? – Living beyond dementia is essential reading for all people who work with people with dementia. Kate Swaffer talks about the model of prescribed disengagement as part of the medicalisation of dementia. She talks about her experience of being diagnoised with early onset dementia at 49 and told to give up work, get your affairs in order and prepare for a nursing home. In her book she talks about living with dementia has been one of the biggest fights of her life. Christine Bryden has also written extensively about living with dementia and in this books reflects on the self advocacy movement for people living with dementia.
- Swaffer talks about the need to move away from a prescribed model of disengagement for people living with dementia to a social model for people living with dementia and their care partners.
- The language about how we see people is changing as part of the personalisation and transformation of social care for older people and people with disabilities in Australia. The language used by the Australian government is referring to people who use aged care services as consumers and the creation of a ‘market’ of care. Within this is the use of the word, choice, voice and control and various policy mechanisms instituted by government to introduce choice and control for older people. However, I wonder whether the positioning of people as consumers of residential services is the right terminology.
- Who is the ‘consumer’ – it takes a community, a lifetime of friends and relationships to age well. These are pictures of my father who died last year from an very aggressive form of Parkison’s disease Multiple System Atrophy. His life was filled with love, family and friendships a 49 year partnership with my mother, he had three children a wonderful grand-daughter and had so many wonderful friendships. When we talk about the consumer directed care or person centred perhaps we are using the wrong language. Is it about community centred supports with the person directing in partnership with their family, friends and the people they love.
- If we think about voice as participation then we can conceptualise the mechanisms that promote the voices of older people on a ladder of participation. But perhaps they can also promote the choice of older people. Historically, the aged care system in Australia was based on ‘doing to’ older people. Older people and their allies were coerced into accepting whatever the system offered them includin g the limited option of primarily residential care rather than community care. In the mid 1990s the government introduced the principles of user rights for older people which meant that providers were forced to engage and consult and inform older people about who they work with older people. In 2013 we saw the introduction of Consumer Directed Care in Community Aged Care which is supposedly shifting the way that providers are thinking and engaging with older people. The degree to which this is happening is contested because of the skills and abilities and knowledge of older people. For people living with dementia and their care partners I think we still tend to do to or do for rather than doing with.
- I believe that the concepts of wellness and reablement are not just technical problems they are adaptive leadership challenges. So how do we know if something is a technical problem or an adaptive leadership challenge? Technical problems have solutions that are known. There are probably some technical elements to implementing wellness, restorative approaches and reablement. For example, we know from the research that if people get access to allied health services and this is implemented within their home and we encourage people to do things for themselves then this can have a significant impact on health outcomes and wellbeing. However, really a lot of the change is changing the culture and practices of organisations. Adaptive leadership challenges are those where the challenge is complex and not so well defined and the answers are not known in advance and it requires us to learn new ways of doing things. For older people who are expecting that the people who support them are going to be doing everything for them it can come as a rude shock when someone says no I am hear to support you to do as much for yourself as possible. For staff who are told that older people can choose whether they work with you it can be a significant change in culture and practice.
- So what about co-production . At its most simplest level Needham contends that it is about people who use services collaborate in their production – it is working with and not to people. Needham contends that co-production emerged out of some of the social movements, for example, a range of reform movements outside the mainstream, including the independent living movement, time banking, mutualism and co-operatives There are different ways and means of putting co-production into practice
- Contested term
- These examples are transformational because they operate outside of the service system. Waverton Hub in sydney is a member based organisation designed to build community connections and support people to age well in their community. People pay a membership fee and can be connected to a range of activities and The Community Exchange System (CES)is a community-based exchange system that provides the means for its users to exchange their goods and services, both locally and remotely. Time banking is where people exchange skills based on time – there was an evaluation of time banking in nsw which showed benefits for people in creating self help
- These examples are transformational because they operate outside of the service system. Waverton Hub in sydney is a member based organisation designed to build community connections and support people to age well in their community. People pay a membership fee and can be connected to a range of activities and The Community Exchange System (CES)is a community-based exchange system that provides the means for its users to exchange their goods and services, both locally and remotely. Time banking is where people exchange skills based on time – there was an evaluation of time banking in nsw which showed benefits for people in creating self help
- Power imbalances Reproduces power imbalances and inequality Resistance by institutions and staff resistance
- Start with a conversation with all people Why do we need to change Who do need to engage and what support do we need to keep them engaged in the process.
- A clinical assessment is about medical conditions it is not about the person. We need more than just the ACFI
- What is important to a person is what they say through their own words and behaviour to bring people comfort. What is important for people are the things that help people become or stay healthy and safe?
- We need to involve the people who use residential services in their design and planning and create a culture of participation and engagement. This includes service users, families, staff and volunteers. Hear the stories and hear what works and what does not work.
- Structures for engagement Access Auslan intepreters Hearing loops Interpreters Do people feel more comfortable in small groups or in one on one Technology and apps to support communication
- I have run over 1500 workshops on enablement and rather than just doing education I have designed a program that includes education but then taking this into a 30 day challenge. If you don’t look at how your organisation needs to adapt to translate some of the ideas into practice then nothing will change.
- What was the outcomes of the engagement? How was the experience for staff and people who use the residential service?
- Involve participants and ask them to be partners with you on this journey If you don’t have the research skills then bring in partners who know research and can support you to build and reflect on how you engage and empower people to live a full life. What outcomes have improved as a result of the engagement and participation process
- Promote my workshops.