The whole person

We would like to put forward the beginnings of an integrated policy response for people with disabilities, focusing on people who have more than one form of disability: i.e. dual or multiple disabilities. By “integrated”, we mean that good policy should view each person as an integrated whole and respond accordingly. The needs of the whole person should not be segmented off into artificial categorisations of need.

Good policy for people with disabilities should reflect key dimensions of their lives - including functional skills and abilities, desires and wishes, and living environments - along with disabling conditions and impairments, activity limitations, participation restrictions, and related environmental factors which affect their day-to-day living and overall well-being.

We argue that disability service systems should meet the needs of consumers and their carers, not the other way around. Consumers and carers should not be forced to “fit” into the narrow parameters of bureaucratic, funding body requirements, which ultimately under-service, or even neglect the needs of consumers and carers they are ostensibly serving. We will reflect on important concepts of “empowerment” and ensuring people’s needs shape service delivery systems rather than systems shaping needs.

Australian federal and state governments, and their various departments, statutory bodies and commissions often separate and classify disabilities into discrete “disability types”. This separation is potentially problematic, creating difficulties for people with complex needs because of dual and multiple disabilities. Current Australian social and health policy classifies disabilities into five main groups - intellectual disability; psychiatric disability; sensory/speech disability; acquired brain injury; and physical disability.

In reality, of course, people can have more than one disability at any point in life. They may have co-existing physical and intellectual disabilities; psychiatric illness and alcohol-drug dependency; intellectual disability and psychiatric illness; intellectual disability and sensory impairment and so on.

A more unusual form of dual disability, highlighted recently, is co-existing Down’s syndrome and Alzheimer’s dementia. In our opinion, while such classifications provide a bureaucratically “manageable" taxonomy of disability types that serves the needs of funding bodies, they create real obstacles to serving the needs of consumers and carers.

Different disability types are formally recognised and reinforced through separate policy, programmatic, legislative and funding streams within Australia. Funding bodies, disability services administrators, peak professional groups, service providers and even some people with disabilities use disability classifications as their basis for understanding groups of people with similar experiences of disability and patterns of impairments, activity limitations, participation restrictions and related environmental factors.

Classification and categorisation are not intrinsically bad , but it makes access to service provision for people with two or more disabilities very difficult. Service systems are likely to target single disability types, leaving people with dual disabilities in a very difficult position, frequently shuttled between different services dealing with only one disability type. The example of people who have both intellectual disability and mental illness is a case in point.

The formal establishment of separate intellectual disability and mental health systems in Victoria in the 80s produced a conceptual and practical, delineation between intellectual disability services and mental health services.

The concurrent passage of the Intellectually Disabled Persons Services Act (1986) and the Mental Health Act (1986) legitimised this distinction in legislation, and formalised the state government’s roles and responsibilities for services for people with either intellectual disability or a mental illness.

Separate bureaucratic structures - the Office of Intellectual Disability Services and the Office of Psychiatric Services - were subsequently established to administer the new programs. The two offices existed separately under the respective auspices of (the former) Community Services Victoria and (the former) Health Department Victoria.

Although the new Acts were generally considered progressive in focus, they were less helpful when applied to people with co-existing intellectual and psychiatric disabilities. Arguably, the creation of two distinct service systems, based on conceptually different disability types actually prevented people with a dual disability getting access to the services they needed. This was largely because programs were targeted to single disability types, effectively excluding people with other disability types from the service.