The whole person

In the last 20 years or so, federal and state health and human service agencies have increasingly differentiated between disability types on the basis of aetiology, diagnostic protocols, treatment and intervention processes, service delivery models, performance outcomes and bureaucratic accountabilities.

It is no surprise, therefore, to find the Victorian Department of Human Services still, for the most part, resources and develops services on a discrete, programmatic basis. That is, more often than not, funding for disability programs and services is likely to be based on a narrow understanding of the targeted disorder as a set of diagnostic and treatment parameters. This maintains a separation from other disability types. The causes of an intellectual disability are different from the causes of a psychiatric illness, but it makes little sense to view a person with dual diagnosis (DD) as a cluster of psychiatric symptoms or a behaviour management problem rather than as a whole person with a range of psychiatric, medical, behavioural, social, psychological, housing, spiritual and recreational needs.

This is not intended to disparage some worthwhile projects undertaken by the Victorian Department of Human Services over the last few years which have sought to promote cross-program collaboration and service system development. The Multiple & Complex Needs Initiative and the Support & Choice Initiative are two examples of attempts to bridge different service systems and address complex needs in a co-ordinated way.

Paradoxically, the separation and categorisation of disability types serves an important bureaucratic function, allowing public bodies to fund programs by classification. This makes life easier for the funding body, not the consumer. It assists monitoring and accountability for the funding bureaucracy. The result is a somewhat artificial, yet administratively manageable categorisation of disability types - “intellectual”, “physical”, “sensory”, “psychiatric”, “acquired brain injury”. In our opinion, such categorisations do not appear to have any real benefit to consumers or carers.

Encouragingly, the more inclusive term “people with disabilities” is used within the Commonwealth State-Territory Disability Agreement (CSTDA) to refer to all people with all disability types. The concept of “disability” within the CSTDA refers to any condition that is likely to be permanent and which results in substantially reduced capacity in at least self care-management, mobility, or communication, which manifests itself before the age of 65 and, which requires significant ongoing or long-term support.

Good public policy for people with disabilities should be based on their functional needs and abilities rather than on a narrow definition of disability types. It should also accommodate variability in living situations. The artificiality of disability taxonomies is more likely to serve funding body and management requirements rather than those of consumers and carer.

We propose 13 key principles to underpin an integrated policy response for people with disabilities.

A focus on the consumer as a whole person. Good policy for people with disabilities should focus on the person as a whole, rather than as an amalgam of different disability types and associated symptoms or behaviours. Both functional abilities and functional needs should be considered when developing an integrated policy response. All people, with or without disabilities, have a complex and interweaving range of dimensions, which must be considered when planning and developing programs and services to meet their needs. All dimensions should be considered, including physical health, psychological, social relationships, environmental (including housing), work-employment, spiritual, and recreational.

A focus on the functional needs and abilities of consumers. In any disabilities programs and services, good policy should take into account the functional abilities and needs of persons with disabilities as well as their wishes. An integrated policy response should enhance and promote health and well-being for people with disabilities, and provide a sustainable living environment for both consumers and carers.

Recognising variability in consumers’ living situations. Consumers’ living situations vary. Where they live, and with whom, should be taken into account as part of recognising and understanding their needs as thoroughly as possible. This will include understanding their social and environmental supports, adaptive skills, and functionality both within the home environment and outside it.

A focus on the needs of carer(s). Consumers are, to a very large extent, dependent upon their carers. An effective policy response will acknowledge the critical role of carers in maintaining the health and well-being of consumers. As a matter of urgency, carers should receive support and resources to continue as a central element of sustainable living.

Consumer and carer participation in service planning and delivery. Consumer and carer perspectives, including perceptions and opinions, are an important source of information for planning the shape and structure of a disability service system. This may include views on what disability services are needed, where they are to be placed, and who would best deliver such services. Consumer and carer participation at all levels of planning, implementation, and evaluation is crucial to ensuring programs and services are oriented towards their needs.