Professor Patrick Keyzer, Bond University
The number of ageing people in Australia is rising. As a proportion of the population, people aged over 65 years will double between 2002 and 2042 to an expected 25% of the population (6.2 million people).
At the same time, the ageing population of Australia, combined with the increasing workforce participation of women, means a large discrepancy is emerging between the number of people requiring care and the number of informal carers available to meet these needs.
And between 2001 and 2031, the number of aged persons likely to require care because of a severe or profound disability is projected by the National Centre for Social and Economic Modelling to rise by 160%, with the number of carers for this same period expected to increase by only 57%.
Irish research found that such extensive reliance on informal family care of people with intellectual disabilities continued even in the face of great strides made in the UK in the provision of alternative housing options and support services, bearing out the international experience of a preference for extensive reliance on family care (R. McConkey [2005]).
Service planning challenge
The concatenation of these statistics presents a signifi cant service planning challenge for Australian governments, legal practitioners and, most of all, carers.
Older parents or carers often need to develop legal plans for the future care of their child: contact with the guardianship system may be a catalyst for planning, or planning can follow the death of the parent or carer; if the parent or carer becomes too sick or weak to take care of the person with cognitive disability; or if the resolve of the parent or carer to care for the person fluctuates. The death of a partner may also precipitate difficulties.
Unfortunately, the social services system is often only turned to in the event of a crisis (or imminent crisis) affecting the ability of the parent or carer to provide care.
In the event of such a crisis, the person with a cognitive impairment may suff er the doubled emotional trauma of losing their carer and entering an inappropriate residential placement because of a lack of planning and/or a lack of available and appropriate service options.
Legal problems
To circumvent these crises, older parents and carers need to plan for the future as early as possible. A previous study, based on a survey of 185 service providers, parents and carers, disability discrimination and welfare legal centres, government organisations and advocacy groups, and supplemented by key informant interviews, found that nearly three quarters of carers of ageing people with impaired cognitive capacity had already encountered legal problems associated with planning for the future (Keyzer, P. et al. [1997]).
Planning is a multi-faceted task, covering issues already experienced, those expected to arise in the future, and the marshalling of necessary outside assistance. The capacity of parents or carers to plan for the future varies in accordance with individual circumstances, and the involvement of outsiders is often necessary and desirable to enhance its success.
Identifying gaps in services
The Queensland Impaired Competence Planning Pilot Project (QICPPP; www. qicppp.org) was set up in 2006 by Professor Patrick Keyzer of Bond University and Professor Terry Carney of the University of Sydney with a grant from the Queensland government and a generous contribution of pro bono legal resources from the Brisbane Office of one of Australia’s largest law firms.
The Project provided services to families who had previously experienced problems accessing services, or who had not been referred to suitably qualifi ed and sensitive experts. Survey research conducted by Keyzer and Carney found that service clients were satisfied with the services provided and pointed to service provision gaps which will form the basis of further recommendations to government, and will guide further research.
The Project produced two refereed reports: Planning for the Future, which provides a general survey of the issues that face parents and carers (and their advocates and lawyers) planning for the future of people with impaired competence; and Private Trusts and Succession Planning for the Severely Disabled and Cognitively Impaired, which explains why Australian social security laws previously made it virtually impossible to use private trusts as a way of structuring succession plans(1).
In addition to providing a direct benefit to the families involved, the Project provided an opportunity to engage in valuable qualitative research to gauge the social realities of planning and to chart pathways to improved service delivery. Th e QICPPP has led to new partnerships with service providers and law fi rms in Queensland and a project to enhance referral networks in Queensland is now well advanced.
(1) The Senate Community Affairs Committee released a report in late 2008 that recommended reforms to special disability trust arrangements: see Senate Standing Committee on Community Affairs, Building Trust: Supporting families through disability trusts (October 2008).
Republished from Australian Innovation 2009 – the print publication
