What was in the minds of the originators of the NDIS, of the nature of disability? How did they see the role of the NDIS within existing social, health, and economic, environments?
Introducing the National Disability Insurance Scheme (NDIS) Bill in 2012, Prime Minister, Julia Gillard, said the scheme would stand alongside the minimum wage, the age pension, Medicare, and universal superannuation as one of Labor’s pillars of social justice and opportunity for all Australians.
The NDIS is brilliant in conception and idealistic, as it should be. Based on the Rights of People with Disabilities it aims to change the nature and quality of care and support for people with disabilities. It is a person-centred, bottom-up scheme, responding to each person’s goals and aspirations.
But since its inception, the NDIS has been buffeted by claims of unmet need, excessive bureaucratisation, demedicalisation and misapplication of funds. There are competing claims for recognition and eligibility from disability groups and concerns that some services are ‘rorting’ the system. For the socially disadvantaged, the homeless and ageing people, there have been practical difficulties of access. Assessment procedures and controls over expenditure have been unsatisfactory.
Despite the aim of person-centredness, the responses offered to disabled persons do not always fit well with their needs, as they see them – formulaic rather than individualised. Pilot trials of independent assessments have been imperfectly conducted and, in the end, rejected by the disability community and government. Costs to government have grown rapidly, with estimates for an annual rate of growth 14 to 17 percent. The once great scheme appears to be unmanageable outgrowing expectations of what it can do.
The lynchpin of the NDIS is the amount and nature of care and support to which each disabled person is entitled. The rub being that these requirements are to be objectively assessed based on permanent impairments affecting daily living, social and economic participation.
Disability
What was in the minds of the originators of the scheme, of the nature of disability? How did they see the NDIS (with its focus on individual needs, person-centred choices, and plans) standing alone within existing social, health, and economic, environments?
Disability is ubiquitous. None of us is a perfect fit for the place we hold in the world, but except for 18%, especially the 5-6% severely disabled, we can function in most accessible environments.
Despite its roots in impairments of body and mental systems, disability can only be understood in the environments in which a person lives and works. Disability for a Kalahari warrior will be different from an Australian farmer or office worker. Then there is the interplay of innate capabilities due to genetic, social, and cultural backgrounds, including access to resources, support, and interpersonal relationships.
The conceptions of disability were limited in the early days of the NDIS. That mental illness is disabling, that fluctuating conditions can be life-long disabilities, that subjective experiences are the essence of disability for so many, and that so many young people with autism disorders would seek access, was not anticipated.
In effect then, the systems of health and mental health, social welfare and justice are all engaged in the manifestation of disabilities and their amelioration.
The problem
The NDIS was set up to stand alone alongside existing health and social systems. In the case of health, the separation from the perspectives and modes of engagement of health service providers has led to mismatches in the seriousness and nature of a person’s needs which then creates aggrievement and hostility.
It sets up a collision between the top-down definition of need and the disabled person’s bottom-up perception of what they need. In any realistic sense, the ojectivisation of an intensely subjective experience must inevitably fall short for many persons unable to function (normally) in accessible social contexts.
Whether or not a person is disabled is a multivalued evaluation. Our society is familiar with decisions of this kind. Indeed, the proper assessment of disability requires – the voice of the affected person, supported by others, with evidence from health, mental health, and social perspectives to do justice to their needs.
What can be done?
Rather than a standalone NDIS, the ideas and actions which underpinned the original philosophy should be embedded, porously, in the existing health (including primary health care) and social welfare/security systems operating in Australia.
Current assessment procedures should be replaced by a broadly-based (multidisciplinary, including community) assessment process with the applicant supported by a nominated friend (a friend is a more nuanced concept than the current legislated nominated person approach).
Just as the modern hospital must reinvent the way it manages critically ill and ageing patients, and public mental health services must re-appraise the management of people with seriously mental illness, in the community, where people live and work, the manifestations of disability must be better understood and people with disabilities more comprehensively supported by health and social systems as well as the NDIS.
Ian W Webster AO is Emeritus Professor of Public Health and Community Medicine of the University of New South Wales. He has worked as a physician in public and regional hospitals in Australia and UK and in NGOs dealing with homelessness, alcohol and drug problems and mental illness.
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