Consumer engagement in Aged Care Services –  An adaptive leadership challenge

Consumer engagement is central to the new Aged Care Standards, however, people often don’t reflect on its meaning. Firstly, if we look at the word ‘consumer’ it implies agency, that people can absorb a range of information and make informed choices about their care and support. Older people should be empowered to make informed choices about their care and support, however, research demonstrates that many older people have a network of family, friends or health professionals to assist them in making choices about aged care (Petriwskyj, Gibson et al. 2015, Trigg, Kumpunen et al. 2017). In order to have engagement, people need to have agency, access to appropriate information and access to appropriate support to be able to engage. Secondly, the word engagement may have many meanings, engagement can occur at an individual, family, community, service or organisation-wide level.

In 2018, I partnered with COTA Queensland and the Aged Care Quality Agency (now the Australian Aged Care Quality and Safety Commission) to facilitate 17 Enhancing Consumer Engagement workshops with over 400 staff working in aged care across Australia. The workshops were designed to describe consumer partnering and engagement, identify the spectrum of engagement approaches and identify some common engagement methods for aged care providers to use in preparation for the roll-out of the new aged care standards. The workshops were participant-led and supported participants in using the Engagement Toolkit developed by Dr Andrea Petriwskyj from the University of Queensland.

Even the language that we use to describe ‘engagement’ could be considered an adaptive leadership challenge for staff in aged care. I have observed that some providers think that person-centred care is consumer engagement. Person-centred care and practice is one part of engagement. Engagement is much broader than person-centred care and encompasses how we engage people at a service, community or organisational level. Engagement is much more than engaging with families and older people at the individual level, it can be about what structures we have in our service to facilitate engagement, or how we support people to participate in engagement across our service system.

Where do I start?

There are four steps you can take to start to think about consumer engagement as an adaptive leadership opportunity in your service.

Step 1 – Map how your service currently engages with consumers

The first thing I ask staff is – how does your service engage with consumers? We often use the engagement mapping tool from the Engagement Toolkit and the Self Assessment Tool Aged Care Quality Standards as a starting point to explore different ways the service engages and the depth of the engagement. The Engagement Mapping Tool includes the ladder of engagement, because engagement with consumers can be considered a ladder from providing information, consulting, partnering to empowering older people and their allies. People can provide a range of examples of engagement with individuals and families. For example, providing person-centred care, providing information about our services, working with the person and their family to look at their support needs and design services to meet their needs, doing annual customer satisfaction surveys and using these results to improve services. These are all good starting points for a conversation about the purpose of our engagement, and whether we could engage people in a different way, as well as identifying gaps in engagement mechanisms.

Step 2 – Start where it makes sense in your system

Every organisation has its own journey of consumer engagement. You may be the Director of a stand-alone residential facility and have had some complaints from residents about the meals or dining experience. This could be a perfect opportunity to explore how you can engage the residents in redesigning the meals or dining experience. Alternatively, you may be running a range of in-home and in-community supports for people and want to explore how you could better engage consumers in how services are designed and delivered. You just need to start where it makes sense in your system. Small steps can often lead to significant change.

Step 3 – Develop a plan of action

You can use the Action Planning Tool in the Engagement Toolkit to develop a plan of action. The questions in this tool will help you to think through the issues and roadblocks that could emerge in your consumer engagement project or initiative. This includes allocating resources - without time and money, many consumer engagement projects get sidelined. It also includes exploring how you will evaluate and monitor the project and the experiences for consumers and staff. Always think about how you can engage consumers in every step of the journey and what support they need to be active partners.

Step 4 – Create a holding environment to support you or your team to do the work

Consumer engagement requires consumers and staff to work collaboratively and be willing to explore and have honest conversations. It requires consumers and staff to think and act differently in your service. I have observed that some staff thrive in wanting to share power with consumers, while others may struggle to allow consumers to express their perspectives and, use this to change practices. These staff will need to do their own adaptive work to shift their practice. Similarly, some consumers may struggle to know how to engage and need support and prompting for engagement to occur. Stop and think about who should be involved in the work and what support they might need to get there, including how you may need to turn the heat up or down (Heifetz, Grashow and Linksy, 2002) to keep people in the right mindset for change.

Consumer engagement is a journey that requires consumers and staff to be adaptive leaders who are willing to explore and learn from these experiences. Be willing to experiment and learn from these lessons and always think - how can we engage consumers in this process?

References

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

Heifetz, R., Grashow, A., & Linksy, L. (2002) Leadership on the Line, United States of America Cambridge Leadership Associates

Petriwskyj, A., A. Gibson and G. Webby (2015). “Staff members’ negotiation of power in client engagement: Analysis of practice within an Australian aged care service” Journal of Aging Studies 33: 37.

Trigg, L., S. Kumpunen, J. Holder, H. Maarse, M. SolÉ JuvÉS and J. Gil (2017). “Information and choice of residential care provider for older people: a comparative study in England, the Netherlands, and Spain.” Ageing and Society: 1-27.

Small steps, big changes: empowerment and inclusiveness needed for older Australians

Older people’s lives are rich and diverse, however, these experiences are often downplayed when they use aged care services. Despite the introduction of Consumer Directed Care, providers may not support older people’s choices and foster their participation and connection to local communities. Furthermore, older people and their allies lack the knowledge and skills to know how to use aged care services to support their connections to their local community.

The transition to more personalised and individualised funding provide significant opportunities for older people, their allies, and services that support them to think and act differently.  Rather than seeing ageing as a deficit, older people and their allies have assets and resources that can be used to change people’s lives. Some recent research projects and community initiatives with and by older people have shared the lived experiences of older people and their allies to challenge ageism and build connections in their local communities.

I explore different initiatives in my opinion piece for Aged Care Insite.

Creating a national community aged care system –  Moving beyond individualised funding

The proposed merger of the Commonwealth Home Support Program (CHSP) or Home and Community Care (HACC) and the Home Care Packages (HCP) program in 2018 poses significant risks for older people and their allies, providers and government. For the last 30 years, program based or block funding (through HACC & CHSP) has played a key role in supporting older people and their allies to age well in their community. In contrast, individualised budgets and consumer-directed care is relatively new, being introduced in 2013. In the race to personalise or individualise community care for older people and their allies in Australia, there is a risk that the capacity building initiatives developed from block or program-based funding for older people and their allies may be lost.  

Individualised funding – one mechanism for personalising community care

The community aged care system in Australia is undergoing radical change as part of personalisation approaches embedding the concepts of choice and control for service users in policy design. Personalisation refers to mechanisms that aim to modify services to meet the unique circumstances of people who use social care services. Personalisation and choice and control for older people in community care have largely been introduced through individualised budgets.  However, the degree to which this has improved the choices of people using home care packages is contested [1]with some anecdotal evidence of people getting less support and people not understanding their individualised budget. Additionally, research from the UK has shown that many older people report lower levels of control than younger people with disability under an individualised budget system. The research indicates that older people and their carers may need more independent support in an individualised funding system.[2]. 

In the race to embed concepts of choice and control for older people in the redesign of the community care system, policymakers have forgotten there are a range of policy mechanisms that can be used to increase the choice, control and agency of service users. Other mechanisms may include person-centred planning, services providing one-to-one flexible support, more personalised intensive support (support facilitation or case management), people managing their own supports (often referred to as self-directed support) and capacity building initiatives to build the skills and knowledge of people using the system. All of these mechanisms could be considered to embed choice and control for older people and their allies in a merged national community aged care program.

Reflecting on history

The creation of the HACC program aimed to bring together seven different systems of community aged care operating in Australia. Prior to this, State governments had some provisions for community care for older people in the 1950s and 1960s (including home nursing, delivered meals, domiciliary care and allied health); however, there were differences between the various state and territory program that led to inequities in access for older people. These factors and the recommendations to expand community care for older people made by government inquiries between 1975[3] and 1985[4]  led to the creation of the national Home and Community Care (HACC) program. Differences between states and territories continue to exist; for example, NSW has the largest number of service outlets while local government remains a large provider in Victoria. The differences between state and territory HACC and CHSP service systems is an important reason to carefully debate the costs and benefits of a merged national community aged care program.

The creation of the HACC program revolutionised how older people and their carers were supported in Australia. Since 1985, millions of older people, people with disability and their carers have lived in their community through support from program-based funding, enabled by significant growth in funding from government over its 30-year history.  Furthermore, some of the social support programs have built connections between people and promoted the social inclusion and connection of older people into the community, particularly people from culturally and linguistically diverse backgrounds and Aboriginal and Torres Strait Islander people. In this sense it has created an entry point for people to access support, particularly for some people who historically may not have been willing to access more traditional in-home support. Additionally, more recent initiatives (through ideas of wellness and active ageing) have built social capital and supported older people and their carers or allies to age well in their communities.

The weaknesses of the HACC or CHSP program, particularly for older people and their allies, have been well documented. The structure of the program through service types led to the creation of a complex system that was difficult to access. There was significant duplication in services with some competitive funding processes creating fragmented service systems. The funding of service types led to rigidity in how services were delivered with some older people needing more support than was available. However, the creation of a central gateway through My Aged Care may address some of the access issues despite the significant challenges in its implementation.

Key principles for a national system

The merging of the CHSP and HCP program is an opportunity to create an integrated and seamless system for older people and their allies. Building on the rich history of diversity of the community aged care system, it is vital to consider how program and individualised funding can empower older people and their allies to age well in their communities. There are a number of principles that should be considered in the redesign of the community aged care system.  

Firstly, if individualised funding is one mechanism that is being considered in CHSP, government and stakeholders must critically review the research and evidence (particularly from the UK) on the individualisation of funding for older people and their allies[5]. Research highlights that individualised budgets for older people don’t necessarily increase their sense of choice and control. Furthermore, it requires significant cultural change for staff working with older people, as well as capacity building initiatives for older people and their allies to make individualised funding systems work. If the individualisation of funding is being considered for some components of CHSP funding (such as allied health or respite for carers) it is important to test the ideas before they are rolled out across the system. In evaluating the impact of any changes, independent evaluation and review from appropriate academic institutions, is a critical tool to inform policy directions in Australia.

Secondly, there needs to be extensive consultation with different actors in the community aged care system, using a ground-up and top-down approach to consultation. As part of this conversation, consultations should be broader than meeting with the National Aged Care Alliance to canvas more diverse perspectives from across Australia such as with a range of consumer organisations working with older people, organisations working with Aboriginal and Torres Strait Islander people as well as regional networks across Australia. From these conversations, a set of principles could be developed upon which any reform or change should be based. This means that the current timetable for a merged program by July 2018 needs to be revised to enable appropriate consultation and debate.

Thirdly, it is important to consider whether the current funding models that operate in community care are fit for purpose. For example, the current four levels of packages in Home Care Packages could be redesigned. The Aged Care Financing Authority Fourth report on the Funding and Financing of the aged care sector[6] identifies lower occupancy levels for Level 1 and Level 2 packages than Level 3 and Level 4 packages. If funding is truly attached to the individual and is portable, it may be the time to dismantle the existing packaged care system and attach funding to support plans, similar to the model currently being implemented through the National Disability Insurance Scheme (NDIS). This could be supported by core program-based funding allocated at regional levels to provide support to older people and their allies to build connections, wellness and active ageing in their local communities. As part of this, it is important to consider how to guarantee funding and how growth funding will be allocated.

Fourthly, any changes need to respect the diversity of the different systems operating across states and territories while balancing consistency across Australia. This diversity is also an opportunity to experiment with different types of personalisation at either a state or local level moving beyond individualised funding. Additional funding to kick start or explore different ways of working is important to encourage services and older people to develop more collaborative ways of working. The CHSP sector has a long history of collaborative practice and innovation and could test different approaches to personalisation in different regions of Australia.

Moving beyond individualised funding

History matters. The CHSP or HACC program has a long history of program funding that has supported a wide range of older people and their allies to age well in their communities. In the race to personalise community care through using individualised funding, the role of program-based funding in building social capital and connections between older people and their local community could be lost. Program based funding can exist with individualised funding to empower older people and their allies to age well in their community.

[1] KPMG (2015), Formative Evaluation of the Home Care Packages, Australia: Department of Social Services

[2] Netten, A., Jones, K., Knapp, M., Fernandez, J. L., Challis, D., Glendinning, C., . . . Wilberforce, M. (2011). Personalisation through Individual Budgets: Does It Work and for Whom? British Journal of Social Work. doi: 10.1093/bjsw/bcr159

[3] Social Welfare Commission,(1975), Care of the Aged Social Welfare Commission. Canberra, Social Welfare Commission

[4] House of Representatives Standing Committee on Expenditure (1982), In a Home or At Home: Accommodation and Care for the Aged, House of Representatives Standing Committee on Expenditure, Canberra, Australian Government Publishing Service

[5] Glendinning, C., Challis, D., Fernández, J., Jacobs, S., Jones, K., Knapp, K., . . . Wilberforce, M. (2008). Evaluation of the Individual Budgets Pilot Program York: Social Policy Research Unit

[6] https://agedcare.health.gov.au/sites/g/files/net1426/f/documents/09_2016/2016_report_on_the_funding_and_financing_of_the_aged_care_industry_2.pdf

Digital disruption in social care: friend or foe?

The role of web-based platforms or digital reform is playing a key role in the personalisation of social care for older people, people with disability in Australia. The emergence of web-based information platforms (designed by government and some providers), digital intermediaries (web-based services connecting service users with potential support workers) as well as on-line discussion forums are changing the relationship between people who use social care, the disability and aged care services and the government. However, the roll out of web-based platforms including My Aged Care and the National Disability Insurance Scheme (NDIS) My Place Provider and Participant Portals raises questions about the government’s awareness of the transformation required by all actors in the social care system to implement such significant reforms.

Digital disruption in social care

The idea of ‘disruptive technology’ or ‘disruptive innovation’ was developed by Christensen (1997)[1]. These terms are used to describe how technology can disrupt the status quo, leading to the development of new products and services that change industries or markets. For example, the emergence of Uber and Airbnb are examples of digital disruption that have disrupted the transport and hotel industries across western countries.  Often referred to as digital intermediaries, these services connect people to services via on-line platforms and tend to have lower transactional costs than existing services.

In social care, examples of digital disruption may include the development of digital platforms to hire staff, service users sharing skills and knowledge via social media as well as web-based access and funding platforms such as My Aged Care, The Carer Gateway and the NDIS My Place Provider and Participant Portals. The emergence of digital intermediaries, that is, digital platforms that connect people using social care with staff (for example Better Caring[2] and Hire Up[3]) may disrupt the front-line worker market in social care. Rather than work for a provider, support workers work as sole traders, managing their own work and relationships through the on-line platforms and the connections with people with disability. Similarly, the emergence of on-line social care user groups on social media provides opportunities to share experiences and lessons in making the system work for them. Additionally, web-based portals (such as My Aged Care, the Carer Gateway and the NDIS My Place Provider and Participant Portals) have disrupted providers and service users.  People using social care have to learn how to navigate these systems as do providers who have had to transform their business processes, systems and skills of staff to accommodate changing systems.  

Empowering people who use social care

The rise of individualised funding in social care could see an increasing role for digital on-line platforms that provide access to information and resources for people using social care. The emergence of on-line marketplaces where older people, people with disability and their allies search for support workers may empower people using social care. These business models are designed to provide flexibility and choice, where people can pick who supports them and at what times. However, there are questions about how workers are vetted on these platforms, particularly from service providers. Furthermore, some research has identified the potential of professional deskilling and a reduction in pay and conditions for support workers in individualised funding systems of social care[4]. These debates highlight important questions about how people choose who supports them, as well as the mechanisms to ensure that support workers are appropriately qualified and paid in a deregulated market.

People are also connecting via social media sharing insights about how to make the social care system work for them. Some users of social care have created on-line petitions[5] to highlight inequities in the social care system providing a voice to express issues and concerns. While social media can be a friend of people who use social care, it can also be a foe if people don’t have access to the internet. Despite Australia being seen as an early adopter of smartphones, there are still people who struggle to get access to the internet. It is important that the government considers strategies to promote access to the internet. Furthermore, it is important to consider that some people prefer face to face contact rather than connecting via web-based platforms or social media.

Provider experiences of My Aged Care and NDIS My Place Provider and Participant Portals

The roll out of My Aged Care and the NDIS My Place Provider and Participant Portals pose serious questions about the understanding of the depth of transformation needed in using on-line technology in social care in Australia. The roll out of My Aged Care from 1 July 2015 across NSW, Queensland and South Australia posed many challenges for all stakeholders across the aged care system. The number of older people and their carers who contacted My Aged Care far exceeded expectations.  Many older people and their allies potentially missed out on accessing information and support because of significant delays. Furthermore, many providers reported receiving incomplete referrals from the My Aged Care contact centre which delayed providing support to older people and their allies. Additionally, access issues for Culturally and Linguistically Diverse (CALD) people and Aboriginal people were underplayed in the design of My Aged Care. While My Aged Care has responded to some of these issues and concerns, more in-depth testing of the system could have reduced the level of disruption experienced by the sector.

Similar experiences have been reported with the implementation of the NDIS My Place Provider Portal from 1 July 2016. Providers have struggled to upload information for payment including bulk uploads.  Significant delays and issues with the portal meant that providers were not paid[6]. The government had to step in and make emergency payments to providers to ensure that staff continued to be paid. For small organisations with limited cash flow, issues with the NDIA provider portal has posed a serious risk for their financial survival and without the emergency funding from the government, many providers would not have been able to meet their existing liabilities. The review of the business case and process for the development of the NDIS My Place Portal identified serious issues with the service delivery operating model, sector engagement and resourcing to implement the changes[7].

The experiences of the roll out of My Aged Care and the NDIA My Place Provider Portal highlight the importance of planning, consultation and appropriate change management strategies in implementing reforms.  Some issues could have been addressed if there had been adequate testing of the portals, as well as more time and resources for stakeholders to implement proposed changes. The political imperative to progress with the reform agenda appeared to override concerns about the sector readiness for change.

Digital Disruption -Friend or Foe?

The emergence of on-line platforms has the potential to provide information to people who use social care services in Australia. However, the design of web-based platforms needs to involve the people who will use the system and not just by technocrats. There should be careful planning and consideration of operating models, and what change management strategies need to be put in place including appropriate time frames and resourcing to support all stakeholders to implement changes.

The reforms currently being implemented for older people and people with disability and their allies across Australia could easily have been derailed because of poor system design and implementation plans. The lessons from the rollout of My Aged Care and the NDIS My Place Provider Portal clearly highlight the importance of time, engagement and appropriate resourcing to ensure that digital changes are implemented in an effective manner.

Consumer directed residential services - using co-production as a framework for action

Choice and control for older people and their allies are the central pillars of aged care reform in Australia. Consumer directed care for older people is being implemented across Australia. From February 2017 older people and their allies will be able to choose their provider. In addition, there is significant debate about the merging of Home Care Packages and the Commonwealth Home Support Program. However, the move to consumer directed residential care is moving at a slower pace.

Residential services, older people and their allies need to be active participants in this process. One way of thinking about how to redesign residential services is seeing older people and their allies as assets as key participants in this process. Using a co-production framework, residential services need to start thinking about how they involve people in service redesign. This requires a shift in thinking of staff, management, older people and their allies.

My paper at the Better Practice Conference in Launceston on Friday 16 September 2016 will argue there are six key steps that residential services can do to start this journey. Download a free guide - Nothing about us without us – older citizens co-producing residential services - six key steps. If you want to kick start a different way of providing residential services then attend a Co-production workshop in December 2016.

Why Australia needs a social insurance scheme for older people

Australia’s aged care and disability service systems are undergoing a radical transformation moving away from block or program funding to individualised funding. These reforms are challenging how government will fund social care for older people, people with disability and their allies in Australia both now and into the future.  At the centre of these reform processes are the people who use social care services.

There are significant differences between the funding of disability services and aged care services in Australia. The National Disability Insurance Scheme (NDIS) is an insurance model with limited contribution to the costs of care from people who use the scheme. The NDIS is being funded from existing contributions from states and territories, additional Australian Government funding as well as through a rise in the Medicare levy which was legislated by the Gilliard Labor Government in May 2013 [1]. In contrast, aged and community care services are funded through general revenue and contributions from older people who use aged and community care services. There is an inbuilt policy assumption by the Australian Government that older people can and should pay more to the costs of their support as they age.

The aim of the NDIS and the aged care system is to promote inclusion and the participation of people in their communities including supporting older people to age well. If the two systems are so different then is the Australian Government creating a two tiered system for people with disability, older people and people with disability who are ageing in Australia?

Framing of social care challenges in Australia

The framing of the issues of disability and ageing, and the government’s responsibility in funding systems of support were framed differently in the Productivity Commission reports in 2011[2]. In the Disability, Care and Support (2011:3) report it acknowledged the significant neglect of disability policy and that the current disability support system is “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports”. The rationale for NDIS was too provide reasonable long term supports for people acquiring a long term disability to minimise the impact of disability and promote the inclusion of people in Australian society. The Productivity Commission advocated the creation of a three tiered system, tier one was for all Australians, tier two was for anyone with disability or supporting people with disability to access information and support and tier three was for people with disability with significant care needs and support. The report recommended that the NDIS should be fully funded by government with no means testing.

In contrast, the Productivity’s Commission report on older people, Caring for Older Australians (2011)[3] and acknowledged significant “weakness” in the aged care system with limited choice and control for older people. The report said the “aged care system suffers key weaknesses. It is difficult to navigate. Services are limited, as is consumer choice. Quality is variable. Coverage of needs, pricing, subsidies and user contributions are inconsistent or inequitable”[4]. It framed solutions in terms of reform by ‘layering’ and argued for older people to have choice and control while increasing their contributions to the costs of care and uncapping the supply of aged care services.

The framing of the issues by the Productivity Commission has set the policy parameters for the creation of two different types of social care systems in Australia. For older people and particularly older people with disability, the impact of these two systems poses questions about accessing appropriate support to age well in their communities.

Benefits of Social Insurance Schemes

The issue of social insurance and funding long term care for older people was subject to significant debate in Australia during the late 1990s and early 2000s. Proponents of social insurance argue that it is universal with no problems of adverse selection and it can provide greater security of funding for older people.  Although, social insurance schemes for older were not politically popular during this time within the Australian Government.[5] However, perhaps this resistance has shifted with the funding and roll out of the NDIS framed as an insurance system to support the participation and inclusion of people with disability in society.

One of the strengths of the NDIS is the flexibility of the scheme for participants in how manage their funding. People can choose to self-manage or use a budget holder model. Although the number of people who are choosing to self-manage is much lower than expected (with only 2% of participants in the Hunter NSW trial site[6] self- managing their plans) there is flexibility for participants in how they use their funding. This trend reflects other countries including the UK where the take up of self-management was initially low, particularly for older people[7]. Capacity building initiatives to build the skills and capabilities of people to manage their own funding is critical.

In contrast, the current funding of aged and community care does not allow the flexibility or a self-managed option for older people and their care partners. Funding is still attached to providers reflecting the historical institutional funding of aged and community care in Australia. The implementation of the consumer directed care in community aged care has created significant challenges for providers and older people and their care partners[8]. Significant capacity building initiatives for older people and their allies are needed to empower them to know how to make the community aged care system work for them. The introduction of a voucher type system for older people in February 2017 will provide some choice to older people and their allies; however, older people and their allies need capacity building initiatives to know how to make community aged care system work for them.

Choice and control for older people through long term care insurance

There is an opportunity to have a different debate about the funding of long term support for older people and their care partners in Australia. Reflecting on the lessons from the implementation of the NDIS and long term care insurance schemes from other countries, it is possible that the funding mechanisms for older people to age well in their communities could be reviewed. As part of this review their needs to a more rigorous discussion about the positives and negatives of a long term insurance scheme for older people, how it could be funded (for example through general revenue or through a Medicare type levy) and how the funding can ensure flexibility to empower older people and their care partners to age well in their community.

References

[1] Sydney Morning Herald, May 15, 2013 downloaded from [url=http://www.smh.com.au/federal-politics/political-news/gillard-chokes-back-tears-on-ndis-20130515-2jlla.html]http://www.smh.com.au/federal-politics/political-news/gillard-chokes-back-tears-on-ndis-20130515-2jlla.html[/url]

[2] Productivity Commission (2011) Disability Care and Support, Productivity Commission Inquiry, Volume 1.  Canberra Productivity Commission

[3] Productivity Commission (2011) Caring for Older Australians, Report no 53, Final Inquiry Report  Canberra Australian Government

[4] Productivity Commission (2011) Caring for Older Australians, Report no 53, Final Inquiry Report  Canberra Australian Government, pg XXII

[5] National Aged Care Alliance (2002) Options for financing long term care in Australia for older people Canberra National Aged Care Alliance

[6] Parliament of Australia (2014:89), Progress report on the implementation and administration of the National Disability Insurance Scheme, Commonwealth Government downloaded from [url=http://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/First_progress_report]http://www.aph.gov.au/Parliamentary_Business/Committees/Joint/National_Disability_Insurance_Scheme/First_progress_report[/url]

[7] Glendinning, C., Challis, D., Fernández, J., Jacobs, S., Jones, K., Knapp, K., Wilberforce, M. (2008). Evaluation of the Individual Budgets Pilot Program, York: Social Policy Research Unit

[8] KPMG (2015) Formative Evaluation of the Home Care Packages Australia, Department of Social Services

Power to Service Users - Evolutionary or Revolutionary?

Australia’s community care system is changing. Existing structures of disability services and community aged care are being dismantled while new structures focused on choice and control are supposedly creating a service user focused community care system. Often referred to as ‘personalisation’ these changes reflect the liberalisation and marketisation of community care across Western nations. The personalisation of community aged care and disability services are occurring at different paces reflecting the different institutional structures of community aged care and disability services as well as different assumptions about the role and capacity of service users.  The changes in community aged care reflect an evolutionary approach or layering approach driven by a desire for an economically efficient aged care system whereas the changes in disability services reflect a revolutionary approach driven by the activism and human rights of people with disability and their advocates. Although community aged care providers may feel that the pace of reform is revolutionary (particularly with the roll out of My Aged Care (MAC), consumer directed care and the Regional Assessment Services (RASs)), the capacity building initiatives for older people are evolutionary and need better resourcing and focus. In contrast, the pace of reform and capacity building initiatives for providers and people with disability in the roll out of the National Disability Insurance Scheme (NDIS) provide important pointers for how older people and their allies should be more active participants in the community aged care system.

Evolution vs revolution

The evolution of community aged care since the mid-1990s reflects institutional change by layering, where new elements are added to existing institutions, and the limited involvement of older people and their allies in the design of the community aged care system in Australia. Institutional care for older people is still a fundamental pillar of Australia’s aged care system despite older people preferring support in the community. The introduction of community aged care – through the creation of the Home and Community Care program in 1986, the establishment of Aged Care Assessment Teams in 1985 and the creation of Community Aged Care Packages in 1992 – reflects a layering approach. Although recent reforms and the move to consumer directed care in Home Care Packages are significant changes, there are still deeply entrenched ageist attitudes about the capacity of older people and their allies to make informed choices about their supports. Many providers ‘consult’ with individual older people in the development of their support plans, however, don’t have structures to allow older people and their allies to be active participants in the design and delivery of community aged care services.

In contrast, policies for people with disabilities since the mid-1980s have actively pursued policies of deinstitutionalisation and framed debates from a human rights perspective.  The enactment of the Disability Services Act in the 1990s nationally and across states and territories enshrined the rights of people with disabilities in legislation. Nevertheless the difficulties in negotiations of the Commonwealth/State and Territory Disability Agreements (CSTDA) meant that the funding of disability services was seriously neglected and led to people with disabilities and their families becoming more politically active and lobbying for a more effective disability service system including deinstitutionalisation. The move towards person directed supports, the lack of funding of disability services as well as the benefits of consumer directed models from overseas perhaps led to a sustained campaign for the creation of an insurance model for people with disabilities. In 2011 the establishment of the Every Australian Counts campaign has been an incredibly effective grassroots lobbying campaign by people with disabilities and their families. Many Australians know about the National Disability Insurance Scheme as opposed to reforms in community aged care. Furthermore there are service-user led initiatives being developed in some areas of Australia to empower people with disability to build and create their own systems of support.

The framing of the issues of disability and ageing, and the government’s responsibility in funding systems of support were framed differently in the Productivity Commission reports in 2011[1]. In the Disability, Care and Support (2011:3) report it acknowledged the significant neglect of disability policy and that the current disability support system is “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports”. The creation of National Disability Insurance Scheme (NDIS) would provide choice and control for people and be economically efficient, funded by government and with limited user pays. In contrast, the Caring for Older Australians (2011)[2] and acknowledged significant “weakness” in the aged care system with limited choice and control for older people and framed ageing as an economic problem. The report said the “aged care system suffers key weaknesses. It is difficult to navigate. Services are limited, as is consumer choice. Quality is variable. Coverage of needs, pricing, subsidies and user contributions are inconsistent or inequitable”[3].It framed solutions in terms of ‘layering’ and argued for older people to have choice and control while increasing their contributions to the costs of care and uncapping supply. Both reports argued for reforms to be implemented in a staged process with resourcing for all stakeholders. The implementation of the majority of changes in community aged care was proposed over a five year period, whereas the implementation of the NDIS was over a much longer period with the trialling of different models as part of the roll out.

Scope and pace of reform for providers

Between 2012 and 2015 community aged care services have undergone a wave of government changes from implementing consumer directed care to embedding a wellness and enablement model in their services. More changes are proposed in 2017 and 2018 with older people choosing their Home Care Package provider and the merging of Commonwealth Home Support Program (a block funded program) and Home Care Packages program (an individualised funding program) into one program.  The pace of change is creating challenges for providers to adjust their business systems and processes and to support staff, as was identified in the formative evaluation of the Home Care Packages program undertaken by KPMG[4]. Although the Australian Government announced additional funding of $40 million for CHSP and HCP providers to assist with the implementation of these changes, providers are reporting reform fatigue due to the pace of change.

The roll out of the My Aged Care (MAC) and Regional Assessment Services has created major difficulties for providers and older people in NSW, South Australia and Queensland. Providers in NSW, Queensland and South Australia have reported significant delays in getting access to information as well as problems with the actual portal. Older people and their allies have also reported significant delays in getting access to MAC.  Furthermore, Aboriginal service providers in NSW have reported that many Aboriginal people prefer to access support through existing service providers they trust rather than a call centre. Many Aboriginal service providers in NSW are supporting Aboriginal people to access MAC. Additionally, some RAS contractors are not getting projected numbers of referrals which has a cost implication for their organisations.  These issues could have been avoided if there had been more appropriate piloting and testing of MAC and RASs before they went live across the three states.

There are significant changes for disability services with the implementation of the National Disability Insurance Scheme. However, the process of change has reflected a gradual approach with more time to develop and explore the impact of changes on the institutional structure and systems of disability services. The testing of different models through trial sites is a sensible approach as is the development of resources for disability services in getting ready for the roll out of the NDIS. It will have been a five year process between the release of the Productivity Commission report and the actual implementation of the NDIS in some states from 2016. In contrast, the reforms in community aged care have been implemented at a much faster pace with significantly less resources.

Capacity building of service users

Capacity building of service users in moving to a more person directed and self-managed system is critical with differences seen in support available to older people and people with disability in Australia. In disability services, the Every Australian Counts campaign was successful in engaging people with disability, families and the broader community in understanding why Australia needed an insurance scheme. The engagement has also seen the development of service user led initiatives such as My Choice Matters in NSW and the Hunter Community Disability Alliance which builds the capacity of people with disability to initiate projects and manage their own funding and supports. However, early results of Consumer Directed Care in community aged care point to the need for further capacity building work for older people.

For older people a peer-led support program has been developed by the Council on the Ageing (COTA Australia) for older people through the Home Care Today initiative. The KPMG evaluation of Home Care Packages (5) highlights some significant transition issues for older people and their allies in the implementation of consumer directed care in Home Care Packages. Although the evaluation was only undertaken over a three-month period (which raises questions about the representativeness of the sample) it reported that many consumers were not accessing supports that were substantially different from existing packages. This indicates that more capacity building work is needed for older people and their allies.

Future questions

The transformation of Australia’s aged care and disability service systems pose significant challenges for service users, providers, government and researchers. For service users and their allies it requires people to be skilled in understanding how to make funding and the service system work for them. This requires appropriate resourcing and service user led models of engagement funded and operated separately from service providers. The design of the NDIS encourages people to manage their own supports and funding; this is not currently possible in community aged care and older people and their allies should be able to choose to manage their own funding and supports.  For service providers changing the culture of their organisations, business practices and attitudes of staff is a key challenge. The Australian Government must provide appropriate resourcing to service providers before they implement reforms. For researchers the impact of personalisation poses many important research questions and involving people and their allies who use services as active participants in this research is vital.

References 

[1] Productivity Commission (2011) Disability Care and Support, Productivity Commission Inquiry, Volume 1.  Canberra Productivity Commission

[2] Productivity Commission (2011) Caring for Older Australians, Report no 53, Final Inquiry Report  Canberra Australian Government

[3] Productivity Commission (2011) Caring for Older Australians, Report no 53, Final Inquiry Report  Canberra Australian Government,pg XXII

[4] KPMG (2015) Formative Evaluation of the Home Care Packages Australia: Department of Social Services

[5] KPMG, (2015) Formative Evaluation of the Home Care Packages Australia: Department of Social Services

The Hon Micheal Kirby launches the first LGBTI Ageing Issue of the Australasian Journal of Ageing

Yesterday the Hon Michael Kirby launched the first Lesbian, Gay, Bisexual, Transgender and Intersex Ageing and Aged Care Special Issue of the Australasian Journal on Ageing  at the Australian Association of Gerontology conference in Alice Springs. As one of the Associate Editors of the Special Issue with my colleagues Dr Anthony Brown and Dr Catherine Barrett, it is a landmark event for promoting the visibility of older LGBTI people in research, policy and practice in Australia and New Zealand. The Special Issue includes the voices from older LGBTI people and their experiences of ageing and aged care as well as research and practice articles for people working in aged care in Australia and New Zealand.

Meeting the leading thinkers and researchers in ageing in Australia

I am very excited to be presenting at the Australian Association of Gerontology (AAG) Annual Conference in Alice Springs, that brings the leading thinkings and researchers on ageing together from across Australia. On wednesday Deb Selway and I will be facilitating a World Cafe which explores LGBTI Ageing, Research, Policy and Practice . On thursday I will be part of a Symposium talking about choice and voice in Consumer Directed Care with my colleagues Belinda Cash, Joanne Mihelcic and Claudia Meyer. The next four days will be filled with rich debates and conversations about ageing across the life course.
You can follow the conference conversations on Twitter #AAGConf15

Implementing Wellness and Reablement and Restorative Support with Older People - Seven Key Steps

I am excited to be presenting a key note address to the Active Ageing Conference in Sydney on 29 October 2015. There are seven key steps that providers need to undertake to implement wellness and reablement with older people. These include:

1. Start a conversation and get everyone on the same page;
2. Critically read research and share it with your team;
3. Nothing about me without me - engage older people;
4. Get behind your front-line staff;
5. Connect people into the community;
6. Form Partnerships;
7. Be Curious, Test Ideas and build an evidence base

Download a free seven steps guide to implementing wellness, restorative and reablement support with older people 

Cultural Respect and Consumer Directed Care

Over the last month I have been facilitating workshops with front-line Aboriginal staff working across NSW to start a conversation about the changes being implemented in disability and aged care services. The front-line staff have raised many concerns about the confusion for Aboriginal people on what the changes in aged care and the roll out of the National Disability Insurance Scheme actually mean for older people, people with disabilities and their families. 

Any reforms in aged care and disability services for Aboriginal and Torres Strait Islander people and communities should be embedded in the principles of cultural respect. The principles of cultural respect include: trust; recognition and valuing of Aboriginal and Torres Strait Islander culture and heritage; and collaborative partnerships and genuine participation of Aboriginal and Torres Strait Islander voices in decision-making.  Cultural respect in the context of service delivery is more than just the visible provision of services that are deemed to be ‘culturally appropriate’. It is about the machinations and systems of an organisation demonstrating respect for the values, knowledge and insights that come from understanding Aboriginal worldviews and the incorporation of these into program, policy and service system design and delivery.

Embedding Cultural Respect in the Change Process

If cultural respect was embedded in the implementation of Consumer Directed Care and individualised funding for older Aboriginal and Torres Strait Islander people and people with disabilities then what would this look like? Firstly, Aboriginal and Torres Strait Islander people should have been consulted and engaged across Australia about the proposed changes in aged care and disability services before they were implemented. There has been some testing of what the National Disability Insurance Scheme will look like for Aboriginal and Torres Strait Islander people in the Barkly trial site in the Northern Territory. In contrast, there has been little testing of what Consumer Directed Care means for older Aboriginal and Torres Strait Islander people across Australia.

Secondly, there would have been education and preparation for Aboriginal and Torres Strait Islander people about what these changes mean for them and how to make the most of these changes. In NSW there have been education and workshops for Aboriginal people living with disability and their families, through the Aboriginal Disability Network and through My Choices Matters  in preparation for the roll out of the NDIS. In contrast there has been very little preparation of older Aboriginal people for the implementation of Consumer Directed Care in Aged Care.

More work is needed in engaging Aboriginal and Torres Strait Islander people and communities in how models of consumer directed care and individualised funding will impact on their support and communities. The KPMG formative evaluation of Home Care Packages in aged care identified the need for further engagement with Aboriginal people. Aboriginal and Torres Strait Islander people need to have a voice and have their knowledge and insights heard and respected in the implementation of reforms in aged care and disability services.

Aged Care Reform –  A technical or adaptive leadership challenge?

At the end of July 2015 I facilitated two workshops with providers on the implementation of My Aged Care (MAC) and Regional Assessment Services (RAS). In these workshops there were many questions about the implementation of MAC and RAS in NSW.

The introduction of a central gateway through the creation of My Aged Care was a major recommendation of the Productivity Commission Report, Caring for Older Australians as part of simplifying and streamlining entry into the aged care system for older people and their carers. In theory it sounds like a sensible recommendation, however, it is also reliant on effective consultation in the design of MAC and RAS as well as realistic time frames in the implementation of the reform.

One way to frame these challenges and opportunities could be through an Adaptive Leadership Framework. Heifetz and Linksy (2002) in Leadership on the Line argue that adaptive leadership is the activity of mobilising people to tackle tough challenges and thrive. They demonstrate that adaptive leadership challenges are those for which there are no simple, painless solutions – problems that require us to learn new ways. In contrast, technical problems are well defined and the solutions are known and those with adequate expertise and organisational capacity can solve them. Adaptive leadership problems are entirely different, the challenge is complex and not so well defined; and the answers are not known in advance.

The development and roll out of MAC and RAS is both a technical and adaptive leadership challenge reflected in the issues emerging from the roll out of the reforms. Although the concept of My Aged Care (MAC) sounds great the actual implementation of this reform across NSW, Queensland and South Australia has created serious difficulties and challenges for aged care services, service users and carers. The actual process of implementation has been difficult with many older people reporting they have to wait on the phone for up to an hour to get in contact with MAC. Similarly providers across NSW, South Australia and Queensland have reported long wait times to get in contact with MAC.

While these problems may reflect a change management process, the actual implementation could have been improved through more adequate testing of MAC before it went live across three states. MAC was only tested in some regional areas of Victoria which does not reflect the complexity and breadth of the service delivery sector across Queensland, Victoria or NSW.  With appropriate testing the technical and adaptive leadership challenges could have been addressed before MAC went live across three states.  

There are particular challenges for some groups of older people in accessing MAC, particularly Aboriginal people and people who speak a language other than english. In NSW, Aboriginal service providers are reporting that older Aboriginal people don’t like calling a call centre and prefer to contact someone they have an existing relationship with which is often Aboriginal service providers. Aboriginal services in NSW reported they are navigating Aboriginal people in accessing MAC but are not paid for this as part of their work. For people who speak a language other than English, they need to use the Telephone Interpreting Service to access MAC and many older people who speak a language other than English don’t know how to access interpreting services.

Some Regional Assessment Services have also reported challenges in getting appropriate referrals from MAC and not getting the volume of anticipated referrals which may affect their costing structures and business models. Other challenges include service users being screened by MAC who are referred to both Regional Assessment Services and Aged Care Assessment Teams which means that Regional Assessment Services are following up with older people who have already been assessed by ACATs.

Three steps to address implementation issues

The Department of Health and Health Care Connect are currently working through the issues with the implementation of MAC. If we approach the reform process from an adaptive leadership perspective then a number of immediate strategies could be implemented by government to support the implementation of this major reform.

Firstly, reconsider the current pace and scope of reform underway in aged care. As the implementation of MAC and RAS are major reforms they needed to be embedding in the operations and landscape of all aged care providers and for older people. It takes time to implement these changes so give people enough time to embed these changes in how they work.

Secondly, appropriate resourcing of the sector to implement changes in relation to MAC. This may include the funding of hands on support to sit with providers and walk them through the MAC guides and support them to redesign their systems to meet the MAC requirements. Providing webinars and manual are one strategy but some people need guidance in working through the manual and digesting information in the context of their services.

Thirdly, further consultation with different communities of older people including Aboriginal people and CALD specific groups on whether a different model is needed to guide and navigate people’s entry to the aged care system. This includes whether the current information provided to older people from different groups is culturally appropriate and culturally meaningful for the diversity of older people. It may also mean asking questions about how effective MAC is in promoting entry to older Aboriginal people and older people from culturally and linguistically diverse backgrounds. 

Nothing about me without me - Older People as co-researchers

Too often older people are not active participants and don’t have a voice in the research process. In many ageing research conferences I attend there are not many people presenting on action research with older people. At the International Ageing and Geriatrics conference in Dublin in Ireland in April 2015 this was quite different with a number of researchers presenting on research projects that involved older people as co-researchers.

A paper by Dr Tine Buffel from the Manchester Institute for Collaborative Research at the University of Manchester presented on a project explored the experience of ageing for people living in three different neighbourhoods across Manchester in the United Kingdom. Older people were recruited as co-researchers to interview older people living in their community about their experiences of ageing. The older people played a key role in identifying questions, recruiting participants and analysing data and interviewing 68 older people.  Without the involvement and of older people as co-researchers the project would not have been able to involve a diverse range of people many of whom were socially isolated.

The people who worked as co-researchers became politicised about the challenges facing many people in their local community. This politicisation process has led to people becoming more aware of the type of resources needed to create age friendly communities with people becoming active connected citizens. This research project can be adopted by other cities with actions and strategies that can have a real impact on the age-friendliness of city neighbourhoods.  To find out more about the guide to working with older people as co-researchers download the report from

http://www.socialsciences.manchester.ac.uk/medialibrary/brochures/Age-Friendly-Booklet.pdf

A copy of the video can be downloaded from

http://www.manchester.ac.uk/discover/news/article/?id=14751

Meeting of the best thinkers in aged care

It’s always great to see how other countries think about, legislate and deliver their aged care services. Where better to find out at the International Association of Gerontology and Geriatrics (IAGG) European Region 8th Congress in Dublin. I have been asked to attend and present at this the 8th congress being held in Dublin, Ireland 23-26 April.

Carrie has been asked to present her poster Older People and Personalisation in Australia – More Choice or Voice? at the poster session on 23 April.

In the presentation I explore some of the philosophical questions about choice, voice and personalisation for older people. You can download a copy of my Poster presentation from http://www.slideshare.net/carriehayter.

More about IAGG-ER: http://www.iaggdublin2015.org/