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More choice, voice and control for people living with dementia 18 april 2016 final

Co-production and people living beyond dementia - paper presented at the Dementia and Community Care Conference in Melbourne

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More Choice, Voice and Control
for people living with dementia -
Exploring Co-production in
Practice
19 April 2016 1
Dementia and
Community Care Conference
April 20, 2016
Melbourne
Nothing about me without me www.carriehayter.com
Introduction
• Changing policy landscape
– Choice, voice and control
– People living beyond dementia
• Co-production with people living with
dementia and their care partners
– Challenges and opportunities
– Practical steps
2
Nothing about me without me www.carriehayter.com
About Carrie Hayter Consulting
19 April 2016
Putting people who use social care at the
centre of their supports and funding
– Research & Evaluation
• Co-design and co-production
– Education & Training
– Public Speaking
– Writing
3
Nothing about me without me www.carriehayter.com
4
Nothing about me without me www.carriehayter.com
Shifting Policy Landscape –
Personalisation
Passive
Clients
Active
Citizens
Block
funding Individualised
funding
Rigid inflexible,
bureaucratic
services
Flexible
responsive
services
19/04/2016 5
Nothing about me without me www.carriehayter.com
6
Nothing about me without me www.carriehayter.com
Ad

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More choice, voice and control for people living with dementia 18 april 2016 final

  • 1. More Choice, Voice and Control for people living with dementia - Exploring Co-production in Practice 19 April 2016 1 Dementia and Community Care Conference April 20, 2016 Melbourne Nothing about me without me www.carriehayter.com
  • 2. Introduction • Changing policy landscape – Choice, voice and control – People living beyond dementia • Co-production with people living with dementia and their care partners – Challenges and opportunities – Practical steps 2 Nothing about me without me www.carriehayter.com
  • 3. About Carrie Hayter Consulting 19 April 2016 Putting people who use social care at the centre of their supports and funding – Research & Evaluation • Co-design and co-production – Education & Training – Public Speaking – Writing 3 Nothing about me without me www.carriehayter.com
  • 4. 4 Nothing about me without me www.carriehayter.com
  • 5. Shifting Policy Landscape – Personalisation Passive Clients Active Citizens Block funding Individualised funding Rigid inflexible, bureaucratic services Flexible responsive services 19/04/2016 5 Nothing about me without me www.carriehayter.com
  • 6. 6 Nothing about me without me www.carriehayter.com
  • 7. 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
  • 8. Policy narratives and language • “Dementia epidemic” – Sufferers – Burden of caregiving – Moral panic • Living beyond dementia (Swaffer, 2016) – Away from ‘prescribed disengagement’ to social model of supporting people living beyond dementia 8 Nothing about me without me www.carriehayter.com
  • 9. 9 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
  • 10. Living beyond Dementia • Benefits of physical exercise for people living with dementia (Alzheimers’ Australia, 2014, Neville et al 2014) • Neuroplasticity of the brain (Doidge, 2007, 2015) • Diet and brain function (Perlmutter & Loberg, 2014) • Living with grief and loss (Kubler Ross, 1981, 1998, Swaffer, 2016) • Relate, Motivate, Appreciate – Montessori Approach (Alzheimer’s Australia 2013) 10 Nothing about me without me www.carriehayter.com
  • 11. Care Partners • Timely information and support – Mentoring • Flexible models of support – Empower person living with dementia – Empower care partners • Who, what, when and how of support 11 Nothing about me without me www.carriehayter.com
  • 12. 19 April 2016 12 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?
  • 13. Co-production with people living beyond dementia 13 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
  • 14. What is co-production? • Active participation of people who use social care services (Needham & Carr, 2009) – ‘Nothing about us without us’ • Using the assets of people who use social care services to improve services (Needham and Carr, 2009) – Broadening and deepening public services (New Economics Foundation) • Mutual self-help between people who use services or have shared common interests (Boyle et al, 2006) 14Nothing about me without me www.carriehayter.com
  • 15. Principles of Co-Production • Active citizenship and participation – Identification of issues and coming up with collective solutions – Dialogue and negotiation between stakeholders – Services as enablers and not fixers 15Nothing about me without me www.carriehayter.com
  • 16. What is not Co-Production? • Consultation and engagement • Involvement in design without participation in the solutions – People need to be involved in the design of the solutions • Individualised budgets (New Economics Foundation) – People need to be involved in the solutions 16Nothing about me without me www.carriehayter.com
  • 17. 17 Co-production in Social Care Compliance (Descriptive) People who use services and carers collaborate to achieve outcomes Offer little substantive change for people who use services Support (Intermediate) Fuller recognition and valuing of people who come together to co- produce outcomes New responsibilities on the people who use social care services, they can still be exploited Transformation Service user as expert. Creating new relationships between service users, peer relationships and organisations Most successful co- production has occurred outside the service system Nothing about me without me www.carriehayter.com Source: 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/
  • 18. Critiques of Co-production • Downplays power imbalances between service users and services (Barnes, 2009, Beresford, 2009, Ottman, 2011) • Reproduce power imbalances and reproduce inequality (Needham & Carr, 2009) • Changing the role of the state, justifies cost cutting • Significant institutional and staff resistance (Needham & Carr, 2009) 18Nothing about me without me www.carriehayter.com
  • 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 https://www.communityexchange.net.au
  • 20. 20 Co-production as transformation www.mychoicematters.org.au http://www.cdah.org.au/ Nothing about me without me www.carriehayter.com
  • 21. 21 Co-production as transformation Alzheimer’s Australia Dementia Advisory Committee, Consumer Dementia Research Network Nothing about me without me www.carriehayter.com
  • 22. Co-production in Practice Assessment Design and Delivery of supports Self – assessment and collaborative process between service users, care partners and professionals Support is designed with people and their care partners as the experts of support Social model of support with rehabilitation for people with dementia and their care partners Flexible – people choose the who, when, what and how support is provided Using the skills and assets of people living with dementia and their care partners Outcomes for people living with dementia and their care partners Australian research project – University of Wollongong – Community Care Outcomes Research Consumer Directed Care Respite Packages Mid North Coast 22Nothing about me without me www.carriehayter.com
  • 23. 23 Co-production in Practice Capacity building Activism within the community Connecting people with like minded interests and building confidence and abilities Advocating for dementia friendly communities Supporting people to continue activities that have meaning and value to them Inclusion of people living with dementia and their care partners in community initiatives Developing initiatives outside of the service system – more innovative and creative People living with dementia and their partners leading initiatives Nothing about me without me www.carriehayter.com
  • 24. Co-production in Practice – Challenges • Needs to build as well as reinforce social capital – Support structures for participation • Challenge existing frameworks of service provision – May not fit into existing regulatory frameworks or accountability structures • Requires organisational support and funding 24Nothing about me without me www.carriehayter.com
  • 25. Co-production in Practice – Challenges • Challenges staff attitudes and culture • Challenges service users and their care partners 25Nothing about me without me www.carriehayter.com
  • 26. Conclusion 1. Challenge ‘ prescribed disengagement’ model - People living beyond dementia 2. Active participation and building connections between people 3. Co-production is one mechanism but needs resourcing and engagement of all stakeholders 4. Cultural change and attitudes by staff and organisation 5. Be creative and engage people in the issues and the solutions 26 Nothing about me without me www.carriehayter.com
  • 27. References and Resources Adult Social Care Outcomes Tool research project downloaded from http://www.pssru.ac.uk/ascot/index.php Alzheimers’ Australia Dementia Language Guidelines downloaded from https://fightdementia.org.au/about- dementia/resources/dementia-language-guidelines Alzheimer’s Australia (2013) Relate, Motivate, Appreciate - A guide to Montessori Activities, downloaded form https://fightdementia.org.au/sites/default/files/AlzheimersAustralia_A5_Montessori_Booklet_WEB(3).pdf Alzheimers’ Australia (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 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 Community Care Outcomes Research Project, downloaded on 17 April 2016 http://ahsri.uow.edu.au/chsd/projects/communitycare/index.html 27
  • 28. References and Resources Dementia Alliance International http://www.dementiaallianceinternational.org Doidge, N. (2007). The Brain That Changes Itself. Melbourne Scribe. Doidge , 2015, The Brains way of healing, Allen Lane , United Kingdom Kate Swaffer’s Blog https://kateswaffer.com/ Kubler Ross, (1981) Living with death and dying, Macmillan Publishers Kubler Ross (1998) The Wheel of Life, A memoir of living with death and dying, Le Grand (2007) The Politics of Choice and Competition The Political Quarterly, 78(2), 207-213. 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 New Economics Foundation, ND Co-production - A Manifesto for growing the core economy, New Economcis Foundation 19 April 2016 Active Ageing Conference © Carrie Hayter Consulting 28
  • 29. References and Resources Perlmutter & Loberg, (2014), Grain Brain, Little Brown and Company, America Neville, C., et al. (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." Australas ian Journal of Ageing 33(2): 124-127. 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/ 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 Swaffer, K., (2016) What the hell happened to my brain? Living beyond dementia, Jessica Kingsley Publishers, London and Philadelphia University of Newcastle (2015) Evaluation of the NSW Volunteering Strategy – Interim Report – Phase 2 Timebanking downloaded from http://www.volunteering.nsw.gov.au/documents/23672909/23725145/Interim%20Timebanking%20Evaluation %202015_final.pdf 29 Nothing about me without me www.carriehayter.com
  • 30. More Information www.carriehayter.com Co-production Masterclass in Melbourne 16 August 2016 Start a conversation @carriehayter 30 Nothing about me without me www.carriehayter.com

Editor's Notes

  1. 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 also like to acknowledge the people living beyond dementia and their care partners who are in the audience today. The title of my paper is More Choice, Voice and Control for people living with dementia – Exploring co-production in practice
  2. The purpose of my paper is to explore how we need to think about people living beyond dementia moving away from a medical model to a more social model of support. I will explore the changing policy landscape including the self advocacy movement created by people living beyond dementia as well as explore some of these themes of choice and control. I want to challenge you to support people living beyond dementia which requires a shift in mindset and attitudes of the community, providers and professionals and care partners
  3. 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.
  4. In writing this paper I want to also acknowledge the people living beyond dementia and their activism to challenge attitudes of society, professionals and other actors in the aged care system. I think that at every conference people living beyond dementia should be presenting and sharing their journies and experiences. For too long people with dementia and their care partners have been silenced and not listened too by professionals and care partners. 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.
  5. 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. We are seeing this funding system emerging as part of the launch sites of the NDIS as well as the emergence of the concept of ‘consumer directed care’ in packaged care in aged care in Australia. However I am not so sure that some of these reforms are changing the way that we see people living with dementia and their care partners.
  6. 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.
  7. In all of this we must not forget that it is about people and how we honour the stories of people and their personhood as they age. The policy mechanisms for enacting the issue of ‘choice’ are framed by how we view people who use services. For those who argue that people who use public services are ‘consumers’ the policy mechanisms tend to favour the creation of markets through the introduction of competition to drive efficiency and effectiveness and services to be more responsive to the needs of consumers. Similarly they introduce mechanisms that promote choice for service users reflecting an assumption that people are both able and willing to navigate a market of care. For those that describe people who use public services as clients. The policy mechanisms are about managing the perceived self interest of the bureaucracy and challenging the paternalism of the welfare state. This can be achieved through competition and the creation of markets but also through voice mechanisms For those who conceptualise service users as citizens the focus moves away from purchasing power to notions of social and political rights and for people to have choice about the voice mechanisms that are introduced. For example, this could include mechanisms that empower people to organise their own supports or to be politically active in this process. There is also the hybrid citizen –consumer whose relationship with public services can change over time. People can be both active and passive subjects and there needs to be a diversity of policy mechanisms not just those that shift the user of public services to be a ‘consumer’. In this space it is very much about how older people see themselves as actors in the social care system . In this space it is about the policy mechanisms that can reflect the diversity of the perspectives of service users.
  8. The language that we use to describe people is powerful. One of the challenges of framing dementia in the public policy space is that it creates a powerful narrative of burden, suffering and a moral panic. While there needed to be more awareness of the issues facing people living with dementia and their care partners the framing of it is an epidemic creates a certain degree of fear As Swaffer (2016) contends we need to move away from this model of prescribed disengagement to a social model focusing on creating more inclusive ways of supporting people living with dementia
  9. So why don’t we focus on wellness for people living beyond dementia. Research undertaken by Alzheimer’s Australia has shown the benefits of physical exercise for people living with dementia We know that from the research on the neuroplasticity and the work of Norman Doidge that we can maintain brain function There is also a clear link between diet and brain function. In a book by Perlmutter and Loberg called Grain Brain they contend there is a link between gluten and sugar and how it effects our brain We know that for people who are diagnoised with dementia then grief and loss is a ongoing journey We know from the Montessori approach that all people need to have valued roles So there is a lot we can do to promote the wellbeing of people living beyond dementia
  10. For people who are the care partners of people living with dementia we know what they need support. There needs need to greater flexibility in the types of support offered, the who, what where, when and how of support. It needs to empower the needs of people living with dementia and their care partners.
  11. 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.
  12. 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
  13. Contested term
  14. Active citizenship Moving from fixers to enablers
  15. Needham and Carr contend there are three different types of co-production in social care including compliance, support and transformation. Compliance – having to set up service user feedback mechanisms because it is part of funding but often in this model the people who use social care services are not involved in the solutions so it offers little change Support - Create service user structures for engagement, however people can still be exploited Transformation – service user as expert
  16. Power imbalances Reproduces power imbalances and inequality Resistance by institutions and staff resistance
  17. 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
  18. The role out of the NDIS has seen the development of new ways of working My choice matters was funded by the NSW government to do capacity building initiatives with people with disability and their allies. They facilitate leadership programs, people can apply to run projects, they also have learning resources on line. The Community Disability Alliance in the Hunter region of NSW is in one of the launch sites for the NDIS. This organisation is run by people with disability for people with disability. They run planning cafes for people who are acessing the NDIS to come together and share experiences and connect people together to support each other to make the system work.
  19. Dementia Alliance International – Support and advocacy of, by and for people living with dementia. They put on webinars and connect people living with dementia across the globe Check out some of their webinars words about words or self advocacy – it would be an educator for staff Alzheimer’s Australia have also been very active in establishing
  20. There are some ways in which you could think about co-production Assessment – self assessment as well as collaborative assessment processes Social model of support with rehabilitation and involving rehabilitation Outcomes – what is important to the person and what is important for them? Who is the best person to provide support
  21. Promote my workshops.