Sustainable care means a sustainable system

One of the most important and overlooked parts of the NDIS (and our economy more generally) is the contribution by unpaid carers of people with disability.  Whether they be mothers, fathers, siblings or grandparents, they often forgo their own needs to care for their loved one, and in doing so save the taxpayer billions of dollars.  In fact the value of all informal care (aged and disability) provided in Australia in 2020 is estimated at $77.9 billion, more than the JobKeeper budget for the same year!  

The National Disability Insurance Agency (NDIA), the body responsible for making funding decisions about the NDIS knows all about this golden goose.  When making a decision about the funding of person’s NDIS plan, the agency takes into account what is ‘reasonable’ for these carers to provide. Whilst this makes sense conceptually, what happens in practice is that the NDIA often assumes any informal carer will be available to support the person with disability full-time and in all sorts of ways, irrespective of their age, employment status or other individual circumstances.

This has led to some absurd decision making by the NDIA. For example, the ABC recently reported on a case where, following the death of a disabled woman’s father and primary carer, the agency expected the woman’s 86 year old grandmother to pick up the caring responsibilities and rejected a request for an increase in funds.  In our pro-bono work in this area, we have seen similar unrealistic and unreasonable expectations on informal carers like the FIFO worker expected to care almost full-time for his severely disabled adult son whilst working 1000 kms away on a remote mine site (some details changed to preserve privacy).  

The question of what is ‘reasonable’ for the NDIS participant’s family, carers and informal networks to provide is, logically, connected to the financial sustainability of the NDIS.  If a person has a sustainable support network around them then funding can better be spent on someone else without those supports.  However, if an informal support system assumed by the NDIA fails in practice, the system fails.  To put it another way, the more unrealistic the expectations of the agency are on the capacity of a person’s informal network to provide the support needed – the greater threat to the sustainability of the care relationship.  The more unsustainable the care relationship, the greater the costs to the economy, the public health system, and, ironically the NDIS as more supports are required.

The Guardian recently reported on a situation where a $70,000 cut to a participant’s plan resulted in the informal carer having to leave her job to make up the shortfall in care available under the plan. While this cut would have saved the NDIS $70,000 (initially), it cost the mother her job and the participant’s paid carers a reduction in their hours. The flow on costs to the broader economy from decisions like this easily eclipse the savings made by the NDIS.  This proposition isn’t a novel one.  These decisions also cut across the very idea behind the NDIS in the first place which, as put in the the Productivity Commission’s 2011 report, is that the NDIS is  a job creator and an economic powerhouse, not a cost centre. 

As I’ve previously written, the economic contribution of the NDIS (relying on unpaid carers as it does) is conservatively estimated to be around $52.4 billion in 20/21.  As usual, the answer to questions of financial sustainably of a human services scheme, whether it be aged care, disability or childcare, is rarely about ‘cost-cutting’.  These systems are complex and their problems are ‘wicked’ but they have the capacity to generate enormous social and economic contributions well-beyond the initial cost (and they do).  Sustainability must be approached with an holistic systems lens that acknowledges all parts of the system, including, in this case, the fundamental value and importance of informal care for people with disability.


Amber Crosthwaite would like to acknowledge the invaluable contribution to this article from Adam Flynn, Aged Care, Seniors Living & Disability lawyer.

Disclaimer – the information contained in this publication does not constitute legal advice and should not be relied upon as such. You should seek legal advice in relation to any particular matter you may have before relying or acting on this information. The Lavan team are here to assist.