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.

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.

Consumer controlled individually tailored budgets (care packages). An allocation of funding should be put under the control of consumers, with support from their carer(s) and an organisation of their choice. Funding allocation should be based on the consumer’s assessed level of need on a graduated scale:

1. Low Need
2. Moderate Need
3. High Need
4. Very High Need

The use of care packages is not new. It has been used in aged care for some time. In particular, the Victorian Department of Human Services’ Support & Choice Initiative appears to be an example of direct funding allocations working well. The inclusion of tailored budgets, as a complement to existing services, ensures consumers receive specialist services they may need and provides some choice and control over their lives.

Avoiding classifying and funding disabilities according to disability types. Government policy should plan and fund disability programs according to need, not prescribed disability types.

Commitment to disadvantaged and vulnerable groups. An integrated policy response will uphold a commitment to the most disadvantaged and vulnerable groups within Australian communities. People with dual and multiple disabilities are among the most severely disadvantaged in Australian society on a number of levels, among them health status, access to services, employment-economic opportunities, and social and relationship opportunities.

Avoidance of marginalisation. An unfortunate dimension of living with a disability of any kind is being marginalised when attempting to enter mainstream society. While blatant discrimination in Australia appears less apparent than it was several decades ago, there are, nonetheless, significant barriers to full participation for people with disabilities. For example, two key issues effectively impeding people with disabilities from full social participation are sheltered workshop-type employment and security of housing tenure.

Social justice. The concept of social justice underpins this discussion, in that it seeks to target the needs of people living with disabilities within the structure of a service system. “Justice” in this context refers to a person’s ability to access and receive a responsive and timely service, without structural barriers.

Sensitivity to difference. An integrated policy response for people with disabilities aims to accommodate differences among people, including consumers, carers, and referring agents, who use disability services. The hallmark of a comprehensive and responsive disabilities service system is its ability to accommodate difference and individualise service delivery according to the specific needs of consumers and carers. These differences are likely to be reflected as differences in disability as well as ability, emotional requirements, expectations, capacities, wants, motivations and personality.

“Need-For-Service” should determine service provision. “Need-For-Service” is another key principle in developing a policy response for people with disabilities. Not all people with disabilities need support. Many are near independent. This principle reflects not only the idiosyncratic nature of disability, but, equally importantly, the contexts within which needs are socially constructed and deemed by service providers to either warrant, or not warrant, service provision at a given time.

Equality of outcomes. “Outcomes” refers to observable (positive) changes in a person’s quality of life through intervention. Potential users of a service or program may come from different backgrounds and starting points, but the goal is to meet individual needs and achieve the best results for all users.

To conclude, an integrated policy response for people with disabilities will dispense with planning and delivering disability services based on an arbitrary classification of disability types. Second, it will encompass a range of dimensions which take into account consumer and carer needs as well as functional abilities and living environments. This will pave the way to an adequate and effective policy response to the complex needs of people living with disabilities.