A plane with half an engine? The NDIS needs to put people at its centre

It has taken many years for Australia to introduce a social insurance scheme to support the needs of people with a disability. One year on into the introduction of the NDIS in trial sites across Australia, a parliamentary inquiry has highlighted a number of implementation challenges.  In ensuring that the needs of people with a disability and their families are met by this scheme, it is crucial that the key policy challenges facing the scheme are both recognised and addressed.

In the first of our NDIS themed articles this week, Claire Hjorth Watson, PhD Candidate at the University of Melbourne, reflects on the need to put people and care relationships at the centre of NDIS policy frameworks.

“It’s like a plane that took off before it had been fully built and is being completed while it is in the air”

The National Disability Insurance Scheme has been many years in the making.  A longstanding vision of many progressive governments, it has nonetheless taken decades to establish a social insurance scheme to support Australians with a disability. As some have noted, the NDIS is “too important to get wrong”. Recently, the NDIS was referred to as a plane that took off without a fully built engine.  Although awkward, difficult and unwelcome, this criticism is important. In this spirit, there are a number of key issues that need to be considered going forward, particularly when taking into account the needs of people with significant disabilities, and their families:

The funding and political will for this scheme remains precarious: 

It would be a sharp u-turn, but we cannot entirely be assured that the funding for the NDIS is future-proof.  The current government has shown their distaste for all types of welfare and civil society and DisabilityCare Australia, as the NDIS is also known, is not funded beyond 2020.   According to their ideologies the Abbott government would seem loath to increase taxes for a disability scheme. Policy makers must remember how long this scheme has taken to get off the ground and continue to advocate for its funding.

1. We need to focus on caring relationships:

Research teaches us that when it comes to caring for people with a disability, it is the relationship that people develop with those who care for them which is all important.  This understanding includes the idea that caring relationships are not always healing, but can also be oppressive and involve difficult issues of power.

2. Wellbeing must be the focus:

One of the inherent problems of a scheme to assist Australians with a disability is the way in which it reduces disability to a commodity that can be measured and redressed.  This depicts the power in caring relationships as unilateral, and ignores the agency of people with a disability in making decisions for themselves. Theorising care like this also commodifies the work of caregivers.  It is worth pausing and thinking about care work as:

“made up of hard practicalities as well as personal attention, warmth, involvement, and empathetic understanding.  The difficulty in specifying or creating a “job description” for caring work, particularly the emotional labour inherent in it, is partly due to the minimal theoretical attention paid to it.  This continues to be a challenge for current research [and policy].”[1]

3. Models matter:

The NDIS is built on a new version of welfare; an insurance model in which people receive a quota of care dependent on levels of disability.  For persons living with a disability to have quality of life, the notion of a quota is inappropriate; indeed this idea presupposes that no one else needs care either.  We all need care.  This is an irrefutable point of human existence.  The idea that we can measure care needs is reductive, and in the case of the NDIS will leave out many people in need of care. People with a disability may find themselves included, or at the margins of the NDIS.

4. The way forward? Policy reflections:

I don't pretend that transitioning the ideal of caring relationships into a market based economy is easy.   But I do contend that it is crucially important to achieve good outcomes. The work of care, and of meeting needs, is relational, complex and we need a scheme which takes full account of this.

Taking what is personal and good about care and bringing it into the public sphere in an organised manner is a huge challenge for social policy.  Inherent in the current medical and market based model are two fallacies: One problem presupposes that the care that we all need can be farmed out to a stranger, and so long as they tick the boxes we’ll be okay.  This ignores the interaction between care giver and recipient and how fundamental that is to wellbeing.  The other problem implies that care of people with complex needs is a task and just that.  No love.  No care.   But it is so much more.  It is deeply ethical human behaviour.  A scheme that forgets these things may crash and burn.

Reference: [1] Sheila Neysmith, 1991, “From Community Care to a Social Model of Care”, in Carol Baines, Patricia Evens, and Sheila Neysmith (eds), Women’s Caring: Feminist Perspectives on Social Welfare, Toronto: McClelland & Steward, p.282

Claire Hjorth Watson BA (Hons), MSW, is a social worker and PhD candidate at the University of Melbourne.  Her current research focuses on the phenomenology of disadvantage and inequality in Australia with a particular focus on women.

Posted by Pauline McLoughlin