Sustainable care means a sustainable system

One of the most important, and overlooked, parts of the National Disability Insurance Scheme is the contribution by unpaid carers of people with disability.

Whether mothers, fathers, siblings or grandparents, they often forgo their own needs to care for their loved one, and in doing so save taxpayers billions of dollars.

In fact, it’s estimated the value of all informal care (aged and disability) provided in Australia in 2020 was $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 deciding about the funding of a person’s NDIS plan, the agency considers what is ‘reasonable’ for these carers to provide.

While 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 on a full-time basis and in all sorts of ways, regardless 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.

For example, a fly-in, fly-out worker who was expected to care almost full time for his severely disabled adult son while working 1,000 kilometres 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 agency’s expectations of the capacity of an informal network to provide the support needed, the greater threat to the sustainability of the care relationship.

The less sustainable 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 (mother) 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, which, as per 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) was conservatively estimated to be around $52.4 billion in 2020-2021.

As usual, the answer to questions of financial sustainably of a human services scheme, whether aged care, disability or child care is rarely about cost-cutting.

These systems are complex, 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 a 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.

(Special acknowledgement to Adam Flynn, aged care, seniors living and disability lawyer, for his invaluable contribution to this article.)

• Amber Crosthwaite is a commercial lawyer specialising in seniors living, aged care and disability