Nothing about me without me - Implementing Wellness and Consumer Directed Support with Older People
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Paper presented at the Criterion Conference - Developing a Consumer Driven Aged Care Workforce in Sydney on 18 February 2016
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Nothing about me without me - Implementing Wellness and Consumer Directed Support with Older People
- 1. Nothing about me without me - Implementing Wellness and Consumer Directed Support with Older People 17 February 2016 1 Developing a Consumer Driven Aged Care Workforce Conference 18 February 2016 Sydney Nothing about me without me www.carriehayter.com
- 2. Introduction • Wellness and personalisation of social care – Reflect on the research • Older people and their allies • Staff • Opportunities and challenges – Providers – Older people and their Allies • Eight key steps 2 Nothing about me without me www.carriehayter.com
- 3. Introduction • PhD research – Why did the issue of choice emerge as a key policy issue in community aged care in Australia? • Translation work with actors in the social care system Nothing about me without me www.carriehayter.com
- 4. 4 Nothing about me without me www.carriehayter.com
- 5. About Carrie Hayter Consulting 17 February 2016 Transforming social care to put people at the centre of their supports and funding – Research & Evaluation – Education & Training – Public Speaking – Writing 5 Nothing about me without me www.carriehayter.com
- 6. Shifting Policy Landscape – Personalisation Passive Clients Active Citizens Block funding Individualised funding Rigid inflexible, bureaucratic services Flexible responsive services 17/02/2016 6Nothing about me without me www.carriehayter.com
- 7. 17 February 2016 7 Downloaded from http://www.sims.monash.edu.au/subjects/ims5048/week3.htm Nothing about me without me www.carriehayter.com
- 8. 8 Nothing about me without me www.carriehayter.com
- 9. 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
- 10. 17 February 2016 Active Ageing Conference © Carrie Hayter Consulting 10 Power to Service Users – Evolutionary or Revolutionary? Community Care Review, November 2015, http://www.carriehayter.com/blog/article/power-to-service-users- evolutionary-or-revolutionary.
- 11. 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 & Linsky, 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) 11 Nothing about me without me www.carriehayter.com
- 12. Distinguishing between technical problems and adaptive challenges Kind of challenge Problem Definition Solution Locus of Work Technical Clear Clear Authority Technical and Adaptive Clear Requires learning Authority and Stakeholders Adaptive Requires learning Requires learning Stakeholders Source:Heifetz, R., Grashow, A., & Linksy, L. (2009). The Practice of Adaptive Leadership - Tools and Tactics for Changing your Organisation and the World United States of America Cambridge Leadership Associates, pg 20 12Adaptive Leadership Masterclass © Carrie Hayter Consulting www.carriehayter.com
- 13. Get on the Balcony Give the work Back Think Politically Orchestrate the conflict Manage your hungers Anchor Yourself What’s on the line Hold Steady Adaptive Leadership Elements Source: Heifetz & Linsky (2002) 17/02/2016 © Carrie Hayter Consulting 13
- 14. Step One – Get on the Balcony - get everyone on the same page 14 Nothing about me without me www.carriehayter.com
- 15. 15 Wellness Reablement Restorative Person or Consumer Directed Care Building on the strengths • Right balance between ‘doing with’ rather than ‘doing for’ • Builds community connections • Identifies what a person can do and wants to do in the future • Time –limited targeted interventions to regain function, confidence or capacity • Evidence-based interventions led by allied health workers that allow a person to make a functional gain or improvement after a setback, or in order to avoid a preventable injury. • Giving more power to people to determine the who, what, why and how supports are provided Nothing about me without me www.carriehayter.com
- 16. 17 February 2016 Consumer Directed Care 16 Expressing choices Self Directed and Self Managed The continuum of person- directed support Structuring Supports creatively with support facilitator Managing money Resources Staff Outside of service system Active Support Facilitation Process Person Centred Managing Budgets
- 17. Step Two – Engage Older People as Citizens - Nothing about us without us 17 Nothing about me without me www.carriehayter.com
- 18. 18 Source: Photo downloaded from Ageing Agendas Nothing about me without me www.carriehayter.com
- 19. 19 Nothing about me without me www.carriehayter.com
- 20. Power and Rank Rank is the power that we have relative to one another in relations, groups , in the community and in the world Positional Rank This is rank that comes from positions that we occupy Social Rank This is the rank we are born with ( eg male, female, white, middle class, heterosexual Psychological Rank Rank that is acquired through life experience Spiritual Rank This rank that may come from being connected to something greater than ourselves Source: Aigner, G, & Skelton, L., (2013) The Australian Leadership Paradox, Allen & Unwin, Chapter 10 – pg 107-123 20 Nothing about me without me www.carriehayter.com
- 21. Empowering Older People • Aboriginal and Torres Strait Islander people – Closing the Gap Report – Aboriginal services navigating people through My Aged Care • People living with Dementia – Assumptions about capacity • People who speak a language other than English – Access Issues to information – Bilingual workers navigating people through My Aged Care 21 Nothing about me without me www.carriehayter.com
- 22. 17 February 2016 22 Coercing Educating Informing Consulting Engaging Co-designing Co-Producing Co-delivery Co-Ownership Ladder of Participation – Participation and Engagement? Doing for Doing to Doing With Doing for themselves Adapted form Think Public, 2015 User Rights Strategies for older people in the mid 1990’s Consumer Directed Care?
- 23. 23 Watch the video https://www.youtube.com/watch?v=WXELgwHQ34o&feature=youtu.be Nothing about me without me www.carriehayter.com
- 24. 24 www.wavertonhub.com.au Co-Ownership and Co-Design in Australia Nothing about me without me www.carriehayter.com www.homecaretoday.org.au
- 25. 17 February 2016 Active Ageing Conference © Carrie Hayter Consulting 25 Empowering people with disability www.mychoicematters.org.au http://www.cdah.org.au/
- 26. Step Three – Critically read research and share it with your staff 26 Nothing about me without me www.carriehayter.com
- 27. Wellness and Reablement - Research • Research - UK, Australia and New Zealand – Improved health and wellbeing for older people (Lewin at al, 2013, Parsons et al, 2013, Parsons et al, 2014) – Reduces people’s dependence on paid supports (King & Parsons, et al 2012, Lewin & Alfonso 2013, Lewin & De San Miguel, 2013) – Role of assessment is critical (Department of Family and Community Services, Ageing, Disability and Home Care, 2012) • Further research – People with dementia (Alzheimer’s Australia NSW, 2014) – Engaging carers and service users in their reablement and wellness (Wilde & Glendenning, 2012) 27 Nothing about me without me www.carriehayter.com
- 28. Personalisation and Carers • Formal care system would not exist without informal carers • Access to personalised budgets – Conservatism of carers and the risks of personalisation (Needham, 2011) – The traditional model gives them security and comfort • Choice and comfort for service users may not necessarily bring choice and comfort for carers • Voices of carers not being recognised and heard (Carers NSW, 2014) • Mainstreaming of carer support funding – Access to appropriate support? – Block funded rather than individualised funding 17/02/2016 Surviving or Thriving in a Consumer Directed World? © Carrie Hayter Consulting 28
- 29. Personalisation and the Workforce • De-professionalisation and increased casualisation of the workforce (Cortis, N., Meagher, G., Chan, S., Davidson, B., and Fattore, T., 2013) • Recruitment and retention of workforce (Baxter, Wilberforce et al, 2010) • Education and skills of the workforce (Glendinning et al 2008) 29 Nothing about me without me www.carriehayter.com
- 30. 30 30 Day Challenge Getting Traction and Translating into Practice Your Organisation/ Team Shared understanding and conversations Where are we at? Nothing about me without me www.carriehayter.com Step Four – Get behind your front-line staff
- 31. Step Five - Think Politically 1. Find Partners 2. Keep the Opposition Close 3. Accept Responsibility for your piece of the mess 4. Acknowledge their losses and accept casualties 5. How can we get our message out there Picture downloaded from: www.twitter.com 31Adaptive Leadership Masterclass © Carrie Hayter Consulting www.carriehayter.com Source: Heifetz & Linsky (2002)
- 32. Step Six – Connect and include people in their community 32 Nothing about me without me www.carriehayter.com
- 33. Step Seven – Form Partnerships 33 Nothing about me without me www.carriehayter.com
- 34. 34 Step Eight – Be curious, test ideas and share the lessons Be Curious I have no special talents. I am only PASSIONATELY CURIOUS ALBERT EINSTEIN Nothing about me without me www.carriehayter.com
- 35. Conclusion 1. Get on the balcony and get everyone on the same page 2. Nothing about us without us 3. Read research and discuss what it means for your team 4. Empower your front-line – they are your best advertisement 5. Think Politically- How will we market what we do? 6. Connect people into the community 7. Form Partnerships 8. Be curious and test ideas and share the lessons 35 Nothing about me without me www.carriehayter.com
- 36. More Information Download the eight key steps for implementing wellness and consumer directed support www.carriehayter.com Start a conversation @carriehayter 36 Nothing about me without me www.carriehayter.com
Editor's Notes
- I would like to acknowledge the Gadigal people of the Eora Nation whose land we meet on today and pay my respects to Elders past and present. I would also like to acknowledge my Aboriginal colleagues who are at this conference today. I would like to thank Criterion Conferences and Council on the Ageing for the opportunity to present today . The title of my paper is Nothing about Me without me – Implementing Wellness and Consumer Directed Support with Older people
- The purpose of my paper today is reflect on some of the research on wellness and the personalisation of social care. In this process I will clarify the language, reflect on the research and pose some questions about the research and explore the eight key steps that I see as being critical for providers, older people and their allies in implementing wellness and consumer directed support. There is also a free resource on website of the Eight Key steps that you can download from my website www.carriehayter.com
- This paper is based on work that I completed as part of a literature completed for my PhD project between 2012 and 2013. It also includes some reflections on the consulting work I have undertaken over the last five years in working with over 150 social care agencies implementing Consumer Directed Care.
- It is also based on my reflections of our families journey through the aged care system supporting my father who lived with a rare neuro degnerative disease, Multiple System Atrophy. This is my father on his 72nd birthday beside Flynn’s beach. I asked Dad what he wanted to and all he wanted was to go for a surf. He was amazing body surfer who taught me all about rips. Part of me wanted to drag him out in the surf but we had to agree that he could watch and imagine the waves on his body. My father died at the end of October 2014 but we battled our way through the system to make his journey as easy as possible.
- 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.
- 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. As part of this changing landscape there are significant challenges for small, medium to large organisations in being able to thrive and survive in this changing landscape? As well as considering the structures that are in place to enable the participation and engagement of service users in your service.
- When I was preparing for this presentation I was reflecting on the pace of change, the fast and furiousness of it all. For some of you in the room it might feel like this – picture. This was the picture that was released as part of the Australian Labor Party’s Education policy, released by the Hon Barry Jones – Knowledge nation. It was the Labor Partys manifesto for reform to create a vibrant thriving nation. Peter Costello called this Noodle Nation and in hindsight Barry Jones acknowledged he probably needed a graphic designer to make his concepts look better. I think however for many of you in the room with the both the aged care and disability reforms pressing on how you work – it may feel like this.
- 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. The language that has been used to describe older people is powerful. In the 1970s ageing was seen as a sickness. Reflecting on the history of how we have constructed the aged care system and viewed people within this system are important stories. 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. 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. However, some of these drivers of change are also driven by an economic framing of ageing that is costs less to deliver supports.
- 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.
- The pace of reform for service users I think is fast and furious and I recently wrote an opinion piece for Community Care Review comparing and contrasting the pace of reform for people with disability and older people. I argued that we really need for capacity building initiatives for older people but I will talk a bit more about that later.
- 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 how do we shift this – how do we get people talking about different things. We need to make sure that everyone knows what you are talking about when we use the words wellness, reablement and restorative approaches. Many people say they know what these terms mean but they don’t always know what it means for them in terms of their practice.
- It is great to read the guide produced by the Department of Social Services which is long over due, however these concepts need to come alive through talking about people and their stories. There are tag lines for example; “doing with” rather than “doing for” “watch, wait and listen” What does the person need to have a good life? Whoever you talk to in your organisation you need to break it down into simple language and explain it on a case by case example. I put the Consumer Directed Care definition there because the recent evaluation by KPMG identified the lack of focus of on reablement and wellness in packaged care. I think this is because we have not brought older people and their allies along on their journey. We will also see the development of a restorative program in the Home Support Program currently being considered How can people choose some restorative support that empowers and enables them to have a good life? What is the song beneath the words for staff.
- In reflecting on our families journey – there were times where my father was totally able to make his own choices but other times he relied heavily on us. At times we had to put a lot of pressure on the system to make it work for us. Things like knowing who was coming and what time – we had six staff three times a day we had to really demand to know who was coming in advance. We had a level 4 package plus some support through the Carer Respite Centre and palliative care but it was not enough for him to die at home. He ended up a nursing home which is not what – if we had been able to have been funded directly or had a higher level of package he may have been able to die at home. We fought to keep at home because we knew that once he entered a nursing that would be end for him because he would not get the type of exercise that he needed to keep moving.
- We need to put older people and their allies in the driving seat. This includes educating and involving them in how they can age well right until the end of their life. It is more than person centre thinking it is actually about really seeing the potential of people that we work with to engage them and really play to their strengths.
- This is Eileen Kramer. She is 100 years of age and was a dancer all her life. At the age of 100 she put on a production at a local Sydney Theatre that was funded through crowd funding. Through this project she has become an international success and promoted positive images of ageing across the world. The way in which she was supported by the Arts Health Institute you would have no idea that there had been any people or organisations behind her production. If we really want to empower people then we need to really listen to their story and their passions and support their passions right up until the end of life. It also not to late to learn a new skill. We know from the research that learning new skills is good for our brain and fires up the neural pathways so how we engage people so they are passionate about their lives.
- Here is an example of what is possible as we age. This is my grandfather who at this stage was at 97 living at home with some support. He was not a social being but really loved going to the club and eating his Rocky Road cheesecake. The club was the place he loved to hang because it had good food, it was cheap and he could have a beat and play the pokies. He died this year a day before his 99th birthday on his second wedding anniversary was pretty happy up until he passed away.
- Add the late line conversation about Aboriginal people.
- 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. We are also seeing the emergence of co –ownership and co-delivery with older people setting up their own organisations ( for example the Waverton Hub) to promote self –help between older people.
- This is an example of a research project in Manchester University that recruited older people as co-researchers in what would make Manchester University an Age Friendly city. The older people were able to outreach to other older people who were socially isolated and became politicised through the research process about making Manchester age friendly.
- We are seeing some models of co-ownership emerging in Australia. The waverton Hub is the first co-ownership model for older people by older people that aims to connect people into the community in Waverton. My choice matters has been funded by the NSW Government to run projects and education with people who use disability services and has successfully run a number of leadership programs and projects for people.
- In the last week, how many people read a research article? Leave your hand up if you talked about what it meant for your practice? The research and evidence base in this area but across all of community care is shifting rapidly. If we don’t engage with the research or the research community then we may be doing things that actively cause harm to people.
- Talk about gaps in the research Identify the potential gaps in the research Research paper by Caroline Glendinning ‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home-care re-ablement services identified how carers and some users of home care are not aware of these concepts of re-ablement. How does reablement work for people with cognitive impairment? What does it mean for people from different cultural backgrounds or for Aboriginal and Torres Strait Islander people? There are significant research gaps and if we don’t engage in research when we don’t know how we can contribute to the evolving research and evidence in this area.
- Talk about gaps in the research Identify the potential gaps in the research Research paper by Caroline Glendinning ‘If they’re helping me then how can I be independent?’ The perceptions and experience of users of home-care re-ablement services identified how carers and some users of home care are not aware of these concepts of re-ablement. How does reablement work for people with cognitive impairment? What does it mean for people from different cultural backgrounds or for Aboriginal and Torres Strait Islander people? There are significant research gaps and if we don’t engage in research when we don’t know how we can contribute to the evolving research and evidence in this area.
- 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.
- You cannot do everything on your own. Maybe you want to design an exercise program in the local community hall. Engage your partners to make this happen
- All you need is a curiousity to see how things work and experiment and take small steps to get things working.
- The purpose of my paper today is to set the scene and explain how this concept of wellness, reablement and restorative support emerged? In this process I will clarify the language, reflect on the research and pose some questions about the research and explore the seven key steps that I see as being critical for providers and older people in supporting people to have a good life. There is also a free resource on website – Implementing Wellness and Reablement in Seven Key steps that you can download from my website www.carriehayter.com
- Promote my workshops.