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 National Respite Association for the opportunity to present this paper and workshop.
This workshop is based on the work I have undertaken in my consulting work in both the disability services, aged care and carer support service spaces over the last 10 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 carers and learnt many things from people I have worked alongside.
It also based on research work that I completed as part of a PhD project which is currently being turned into a Personalisation in Practice book. In my research I explored some of the emergence of the rights of older people and some of the inherent tensions in the personalising of support for older people and their carers.
This presentation is on slideshare www.slideshare
The policy landscape in social care including people with disabilities, older people and carer is changing.
The campaigning and lobbying by people with disabilities and their allies through grassroots stories and the roll out of the NDIS is a significant reform. We are seeing the dismantling of block funding to a shift to highly individualised and personalised funding models. Similar trends are emerging in supports for older people and their allies. While in aged care we don’t have self-directed budgets we are seeing the mainstreaming of consumer directed care in packaged care programs.
For carers there are individualised budget models developing, however, we are also seem some debates about whether the interests, perspectives and voices of carers are being recognised and reflected in the funding.
Some say this is part of people exercising their rights as citizens and having informed choice and control. Others argue that it is driven by economic rights and people becoming customers. The policy narrative is evolving and shifting in this space
In this workshop I am going to explore what personalisation means for leaders of organisations and their boards.
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 leaders, managers, chief executive officers and organisations. There are also significant
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.
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.
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.
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 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’.
People have described some of the challenges of what personalisation means for their organisations some of which are on the spectrum of the lucky country to fear and somewhere in between.
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. For older people it appears that it has been more driven by professionals and some advocacy groups rather than older people themselves.
These narratives can influence how organisations think about personalisation and what it means in your organisation. Some people and organisations will see the possibilities of personalisation but others are fearful.
We can see these narratives being played out in Australia.
Last week I was watching the final of the X factor – it helps me relax and calm my brain. I watched the single of the group Brothers 3 – the Lucky Ones. This was exactly as I was writing this conference paper and thought this could be the theme song of some organisations in how they have embraced the changing landscape through personalisation.
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 some Chief Executive Officers and their boards they have surveyed the landscape and are seeing the opportunities. One organisation that I have worked with transformed a traditional group funded model of day programs to individualised programs of support. People are talking about their lives and what they need to have a good life which is supported by how the organisation structures their funding. The Chief Executive Officer and Board members talk about wanting to see people grow and thrive and to say “I like who I am and I like what I do”. This culture has filtered to support workers who talk about people in terms of their passions and their dreams. One thing he did say to me was the reason they were able to transform the organisation was because it is a small to medium organisation which meant that leading change was not as complex if they had been a large organisation.
I have also seen stories from front-line workers in large organisations who are frustrated by the inertia in their organisations and that the systems and processes of management. While front-line workers and want to embrace the lucky one’s culture but are not supported by management or the strategic vision and mission of the Chief Executive Officer and the board.
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 my work? Will I have a job? 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”.
For Chief Executive Officers who are leading this transition it can be a stressful time. There are risks in terms of funding, how will we exist in the future. This can be impacted by a board who are either disengaged or see the new world as the Lucky Ones with no sense of how to manage and identify the risks. The Chief Executive Officer comes out of board meetings either dispairing or going home and waking up in the middle of night and thinking about the challenges ahead.
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.
So we can see from our brief discussion that there are many areas of opportunities for agencies working with people and carers. This includes Governance, Service Improvement, leadership, Learning, Development and Research
Some have described the changes occurring as like trying to turn the Titanic around. The titanic was indestructible, however, no-one planned for it to hit an ice berg. Part of preparing for the external policy drivers is thinking about planning for the future and what are the contingencies if your organisation that you lead is hit by an ice-berg.
Some leaders have started to change and rebuild the titanic and implement changes in a staged process. For small to medium organisations this may be easier because it does not require such efforts to dismantle the ship and turn it around.
Personalisation represents a significant change process for all stakeholders
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
Currently in the different support streams for carers we have a mix of block and individualised funding . For example with the NDIS
Given the risks of mechanisms promoting choice then perhaps it is about focusing on voice. What does voice mean?
Simmons argues that voice is about ‘giving users a more effective say in the direction of services, by means of representative bodies, complaints mechanisms and surveys of individual preferences.
According to Hirschman it can also be about exit whereby people choose to exit a service because they are dissatisfied. This, however, is tricky in aged care because there is often nowhere else for people to exit.
Voice can also have a political focus through expressing wishes and preferences through voting or participation in political parties or representative bodies.
Simmons argues that voice can go beyond the confines of choice because it allows people to express their preferences or feelings about a particular issue. This can also be undertaken as part of the membership of a group which can increase the impact on political processes and outcomes.
Rather than being a consumer who expresses their individual preferences in the market, people can express their preferences through relationships with other people, providers and groups. It concept of voice and the mechanisms to promote voice are therefore often aligned with the concept of citizenship.
There are strategic questions for boards and leaders of organisations. Can we survive in this changing space? What will our organisation look like? How will we operate in a changing market of care?
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.
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.