The document discusses a conference on enhancing independence and person-centered approaches in aged care. It provides an overview of Carrie Hayter Consulting and their work in areas such as personalization, education and training, and person-centered practice. The document also discusses challenges and opportunities in shifting policies around personalization, consumerism, hearing voices of older people and carers, and translating research into practice for frontline workers and managers.
I would like to acknowledge the traditional owners of the land and pay my respects to elders past and present.
I would like to thank the Sydney South West Local Health District for the opportunity to present today and also acknowledge the extraordinary depth of talent and knowledge that we have in this room today. I am very privileged to be sharing this stage with international and national leaders in their field. I have had the privilege to work with many colleagues from south west Sydney throughout my career and many of whom have lead the work in working in the context of ageing and diversity.
This paper reflects on the work I have undertaken in my consulting work over the last ten years. In this work I have had the privledge of working alongside small, medium and large organisations , their staff and volunteers to transform them from being service centric to focusing on service users. As part of this journey I have also been privledged in working with service users including older people, people with disabilities and their allies. In this work I have learnt so much from the people I have worked alongside.
During this presentation I may also switch hats and wear a service user or carer hat in honour of my father who recently passed away from a neuro-degenerative disease, multiple system atrophy. The journey with my father taught me a lot about the importance of early intervention, rehabilitation and the role of allied health in this journey. It also taught me the importance of considering
This presentation is on slideshare www.slideshare
I have worked in the human services sector primarily in the ageing and disability service sectors for over 25 years. I have degrees in social work and economics.
During this time I have worked at the front-line as a case manager, managed support staff, worked in the NSW Government in policy and funding of disability service programs, worked in the advocacy sector for people with disabilities, worked in the UK for 4 years for local service departments, for an aged care industry body.
For the last 9 years I have run a consulting and training business that supports stakeholders to move to a more personalised world of social care. I do this through research, evaluation, training and education, strategic planning and mentoring.
In that time I have worked with small, medium and large organisations including government and non-government agencies in both the disability services and aged care sector. I have also worked with a range of health services and allied health professionals in both Australia and the United Kingdom.
I have just been privileged to spend three weeks in Tasmania exploring the beauty of the east coast and the west coast wilderness. I wandered through the wild forest of the Gordon-Franklin, made famous by activists who saved it from being dammed.
As I was wondering through these magnificent forests produced over millions of years I was thinking about this presentation. Nature has a way of producing extraordinary things with different parts of the environment playing to come together.
What are the lessons that can be learnt from these old growth forests? What can we as health professionals do to change systems so that older people are put at the heart of their support?
If it was not for the foresight and fierce determination of activists this large tract of wilderness would have been dammed and not enjoyed by future generations. Sometimes it is the small steps of people who have vision, foresight and determination that can bring about change. For everyone in this audience who has the privilege to work alongside older people you have the potential to make a difference in people’s lives in every day.
There were many things that I learnt while in Tasmania , particularly about the Huon Pine. Huon Pines only grow one millimitre a year.
When Huon Pine trees fall to the ground they don’t die what happens is new Huon pines can grow on these trees and develop new forest
I thought about the Huon Pine I thought about our health systems and how a move or shift of a millimitre or more could just be a start of a whole system of change?
Is this the story of what happens in the health care system, one limb falls like a Huon pine tree and then it starts to grow and evolve in different direction.?
The purpose of this paper is to explore some of the challenges in translating the research on improving the independence of older people into practice.
I am locating the changes in focusing on enhancing independence within the broader policy context of ‘personalisation’ of support for older people.
The external policy landscape for both carers, older people and people with disabilities is changing. We are going through a period of extroardinary change and transformation as part of personalising care and support for older people, people with disabilities and their carers.
As part of these changes there are both challenges and opportunities for front---line Practitioners, Leaders, Managers, Chief Executive Officers. There are also significant challenges for health care policy and systems in shifting to be really put the user of health services at the centre of practice and design of systems
Personalisation is a contested term. It means different things to different people and actors. However, within these debates there some agreements. Needham (2011) for example argues that personalisation is
“public service delivery mechanisms that aim to modify the service to meet the specific circumstances facing individual users. Such mechanisms could include individual budgets, personalised assessment mechanisms and new forms of conditionality.
She contends that personalisation in social care encompasses a broad agenda of approaches that come under the banner of person centred planning and self directed support (pg 31).
Two of the central themes of personalisation are choice and control for service users and trying to design service systems that move away from being service centric to focusing on the users of services.
It is also based on a principle that service users know what they need and the role of the allied health professional is to empower and support the person to get the best possible outcomes. You could argue that enhancing and improving the function of older people, including giving them more power, voice, choice and control within the primary and acute care health care systems aligns with some of the principles of personalisation.
There are significant changes happening in the policy landscape in age care, disability policy which will influence health care 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 health 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 local health districts in terms of how they will respond to these changing external landscapes. There will be questions emerging about how all of this will effect health care policy in Australia particularly the positioning of older people and their allies in both the funding and delivery of health care in Australia.
The ‘consumer’ or service user has become a central figure in the implementation of personalisation through the concepts of choice and voice. The positioning of the service user can be placed on a spectrum with different language to describe people who use services and the mechanisms used to promote ‘choice’ and control or hearing the ‘voice’ of older people
For those who argue that people who use public services are ‘consumers’ then they 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. In this economic framework there is also the possibility of co-production where purchasers and producers co-produce outcomes for the interests of service users
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.
There are questions about how older people will be positioned in this debate particularly as health care consumers and way in which acute care and allied health services for older people will respond to these changing roles.
In response to some of this we are already seeing more personalised health care systems through the piloting and testing of individualised budgets in the United Kingdom ( need to read some of the evidence about this).
One of the challenges of personalisation is to appreciate and understand the historical forces or structures that have created the different service systems in this country.
If you look at history we have come a long way, however, we are in the process of dismantling a whole service infrastructure and moving from a block funded to individualised funding system with different stages occurring for older people, people with disabilities and their carers.
This picture shows some of the drivers of personalisation for older people in Australia. It contends that for older people they were largely invisible and the system was created in the interests of professionals, providers and with older people institutionalised. However, with the economic costs of ageing combined with the changing expectations and the emergence of the concept of active ageing we are seeing changing models.
However, moving from the Old to New system takes time is a complex process of dismantling and transitioning not only funding but the practices, values of people in your organisations. It also requires people to lead organisations through significant changes
Since the mid 1970’s there have been some extraordinary changes in aged care policy in Australia.
This plaque is now on the site of a healthy ageing centre which is a hive of activity of older people connecting and exercising.
This plaque was taken next to a healthy ageing centre which was a hive of activity of older people exercising, lifting weights and being supported by personal trainers. I watched people connecting, sharing stories about their lives.
If we compare this to the plaque where this was located on the same site – we have seen a small revolution in the way that we view older people though the concept of positive ageing . This is in part because of the work of health professionals and researchers challenging many of the assumptions and entrenched attitudes about ageing.
However have we gone too far with positive ageing? Has all the images and the stories in the media of older people sky diving or swimming the cole classic actually working to objectify older people? In this I am borrowing this idea from Stella Young a disability activitist who died suddenly last week. I heard Stella speak at the TED conference in Sydney at the Opera House last year. She spoke about how people with disabilities have become objects of inspiration a term she called ‘disability porn’. What she means is that people with disabilities become objects of inspiration by non-disabled people. Her presentation and commentary got me thinking – it this what happens to older people?
While the message of positive ageing is to promote positive images of older people , have we turned a different corner and know all we see are images of older people doing inspirational things so they become objects or ‘ageing porn’.
In promoting these images are we romanticising the issue of ageing.
Perhaps we are feeding people overly optimistic messages of what is possible when things in your body are not working as well as they could be. However, the opposite of this is not wanted either where people don’t see any possibility of supporting you to maintain your independence and well-being. How do we as professionals maintain this delicate balance.
One of the challenges in this space is there are some dominant narratives being played out in the policy space both nationally and internationally
Needham (2011) who has researched the narratives that have influenced policy debates in the personalisation of social care in the UK contends that are five key narratives that have emerged as part of the policy landscape in the UK. These include the following:
Personalisation works , transforming people’s lives for the better
Personalisation saves money
Person – centred approaches reflect the way that people live their lives
Personalisation is applicable to everyone
People are the experts in their own lives
One of the interesting things is that we are seeing these narratives emerging in debates in Australia particularly with the actual implementation of the NDIS which had a much more grass roots campaign.Some of these narratives fundamentally challenge the role of professionals and the way in which health care systems have worked or viewed older people and their allies. Some of these narratives are also hugely contested.
There are two ways these issues are played out. The first way is people seeing themselves as being lucky and fortunate and these policy changes are extremely beneficial.
For service users this could be a narrative of we are lucky, we can manage our own money. As one service user said to me, a man in his late 50s who had a spinal injury through work – After 17 years I am actually being asked what I want. We are seeing service users both older people and people with disabilities creating organisations and structures so they can lead projects and changes.
For some staff they are embracing this changes to work in a different way and to actually be flexible and responsive. As one Aboriginal worker said to me “so you mean that know I am actually encouraged to break the rules, after all these years of breaking the rules and just not telling management”. Some social workers have said to me Hellalujah…. you mean I can actually implement the Social Work Code of Practice…. Thank godness for this.
For others including some service users, carers and providers it is fear. It is fear about moving from a block funded model to individualised funding. What does this mean for my son, daughter, father and mother.
For staff, it may mean what does this mean for their work and how they view older people? As one support worker said to me in a workshop – if I encourage older people to be independent then I wont have a job? If people do more for themselves then I may not have as much work as I like. For case managers or support facilitators many like to be the professional and ‘tell people how to live their lives”. As one allied health professional said to me “the allied health people come together and do the planning before we meet the person”. When I asked do people actually implement their plan if they are not involved in the decision making, she looked at me and said “my plans always work”.
One of the things that people say why they cannot change is because of funding, time and it is all too hard so we will just let government drive the agenda. However, as leaders of organisations it is important to start different conversations in your organisations. The conversations may shift people’s thinking of what is possible.
In order to translate some of the evidence from the research there needs to be a change in how we view practice. There are a number of key elements that form part of this translation process.
Perhaps the answers for front-line managers, middle management and chief executive officers is striving for person centred management. . The elements of this are Visionary Leadership, by being clear about the direction of the organisation, motivating people and aligning the direction with actual implementation.
All these areas are important, however, one area I think that agencies could improve is for management to get behind the front-line staff. They are your most important asset the markets what your service does.
One area that practitioners and health care systems, particularly in their work with older people could improve is hearing and responding to the voices of older people.
Too often we forget to involve older people or the people that use and commission services in the development, planning and design of support. There are a range of mechanisms by which this can occur both individually or collectively.
Older people and their allies are diverse so it is important to have a diverse range of structures that respond to this diversity. For example, with people who speak a language other than English engaging the specific cultural community through bi-lingual workers and promoting information in language and culturally specific means.
As part of these changes there are examples of communities and service users coming together to create structures to support them through this transformation process.
For older people there is a self help movement through the Village to Village network which encourages people living in local communities to create their own organisations. Originating in Boston, older people are coming together to create their own structures, the organisations are member based and designed to connect older people to age well in their community. These models have been expanded for all members of the community.
For example the Waverton Hub one of the first examples in Australia . It could be accessing a range of activities in the local community.
It would be interesting to see how these ideas and concepts could work in a health care context.
We also need to consider the interests and perspective s of carers which may be fundamentally different from the people they care for.
The research from the UK, particularly in relation to personalised budgets highlights that carers may have a different perspective to how they should be used and the conservatism of carers.
Recent research completed by carers NSW on the experiences of carers in the Hunter in the pilot of the NDIS highlighted the some of the perspectives and voices of carers have not been heard.
We need to think about how we bring along carers to educate and support them to understand how to enhance a person’s independence as well as providing as much information as well.
More research is also needed in this area
In my experience of having worked alongside many health care professionals a key principle that needs to be embraced by all front-line practitioners is reflective practice. This means reflecting on our work, our values and an how we view and work with older people. As health professionals we can all have blinkers and get entrenched in doing things a particular way because we have always ‘done it this way’.
A key area is planning and engaging people in the development of plans so they own the plan rather than it being driven by the health professional
The health system needs to allow professionals the space to be creative and test out new ideas about practice and challenge the boundaries. This could include doing research and involving older people in this process/
I think it is important for middle management to get behind their front-line staff and support them to navigate the system to get outcomes for older people.
There is an idea of productive tension whereby middle managers agitate for change and influence senior management.
Research and sharing ideas such as this conference and testing new ideas and implementing these changes if they work.
Currently in the different support streams for carers we have a mix of block and individualised funding . The changes in aged care and disability services will effect health funding and policy
There are some challenges in operating block funded and individualised funding models at the same time. I think it is possible for block funded services like what we have operating in health to become more personalised. I also think we need some caution with this move to personalisation and particularly individualised budget – having a personalised budget does not automatically translate into a personalised support?
Some staff are self interested and it is how we juggle these competing priorities
I think there are challenges in the commission of health services given that historically they are largely driven by the interests of professionals.
Exploring the possibility of partnerships, co-operative models and service user lead models requires a lot more thinking and work.
Need to support front line practitioners and design systems that support them to bet the best they can be to get the outcomes they can with older people
Engaging older people in a way that has meaning and respects their journey through whatever challenges has been thrown at them. Not romanticising ageing but gently encouraging and prompting people and acknowledging that the process of ageing can challenge people’s identity their concept of self as well as the people around them who support them on this journey.
For managers and senior executives, I say to you in the last week what did you do to support your front-line staff? What are you planning to do in the next 6 months? How will you get input and feedback from the front-line about whether this is working?
For all people in this room, take time out to think, write and reflect. Engage your colleagues the people you work alongside including older people and listen and learn from them. Some of the most challenging situations or people we work with are fantastic opportunities for learning. Embrace and lean into this and learn from it.
Small changes like the growth of the Huon Pine can make a difference. Don’t be afraid to question systems or practice if they appear to be driven by the interest of professionals rather than the users.
Sometimes you need a small part of a Huon Pine to drop to the forest floor, for new growth to emerge and a whole new forest starts to grow. But the forest needs to be protected and allowed to grow in its own way.