Power to Service Users - Evolutionary or Revolutionary?

1 December 2015

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