Sustainability v Parent Responsibility

It is a truth universally acknowledged that any person unwise enough to criticise someone’s parenting choices is just asking for a slap in the face (though kids, if you are reading this, violence is never the answer). But in the alternative universe of the NDIS, these rules don’t apply. Come planning meeting time, parents of kids in the Scheme will be all too familiar with hearing an outsider’s perspective on exactly what constitutes their responsibility as a parent.

Conversations around the responsibilities of parents are often incorrectly simplified into a false dichotomy: what’s best for the family (more support) v. what’s best for the NDIS (saving taxpayer money by relying on informal support). However, new NDIS Minister Bill Shorten has made it clear he wants to broaden the “Scheme sustainability” discourse to include the economic benefits of NDIS spending.

One of the long-promised benefits is that the Scheme will enable more people with disability and their carers to return to the workforce. But the last quarterly report shows that only about half of the parents of kids in the NDIS between 0 and 14 are in paid employment. In 2019, the Tune Review also found that the NDIA’s expectations of parents were preventing carers from participating in the workforce. So, in an ironic turn of events, are the NDIA’s expectations of parents actually a barrier to Scheme sustainability?

What does the law say?

You are probably aware that the NDIS is not designed to replace the normal things that parents do for their kids. Section 34(e) of the Act requires planners determining reasonable and necessary supports to consider “what it is reasonable to expect families, carers, informal networks and the community to provide”. Where this business gets complicated – and interesting – is in deciding exactly what is “reasonable”. 

The NDIS (Support for Participants) Rules provide a little more detail. For children, they require the NDIA to consider:

• That it’s quite normal for parents to provide substantial care for their offspring.

• Whether the child has additional needs compared to other children their age, because of their disability.

• Whether there is any risk to the wellbeing of family members or carers.

• Whether funding a support for the family would help build the child’s capacity or reduce any other risks to the child’s wellbeing.

Interestingly, the term “parental responsibility” does appear in the Act, but not in the way you might think. It is a phrase from family law about determining who is responsible for a child’s welfare and wellbeing – it does not impact or even refer to funding levels. When people talk about “parental responsibility” in a funding context, they are most likely discussing s34(e).

Don’t count on Core

So, what does the law mean in practice? Usually, younger children receive small Core budgets. Afterall, Core supports tend to cover the sort of activities that no 1-year-old on the planet can do independently, such as getting dressed. But the rules do require planners to consider the additional needs a child may have because of disability. As children without a significant disability age, they gain independence.

Therefore, Core budgets usually grow with the child. The graph below shows the average annual Core budgets by age for the third quarter of 2021–22. For kids aged 0–6, the average Core budget is only $4,000 a year, whereas for people over 25, Core budgets average around $90,000 annually. You know that very public meltdown the NDIA has been having about the number of kids entering the Scheme? It is probably worried that $90,000 Core budgets that might be in their future.

Trends aside, the NDIS is an individualised Scheme. Consequently, there are circumstances where children are entitled to very high Core budgets, such as if the child has complex medical needs, or there is a risk to the family’s wellbeing.

For example, in an Administrative Appeals Tribunal (AAT) case, 5-year-old QZHH was funded for 144 hours of support work a week. This child required constant active supervision, sometimes by more than one support person. QZHH’s father was the only parent able to provide any of this support. Therefore, the AAT concluded that it was reasonable and necessary for QZHH to have a substantial Core budget. In a similar case, 3-year-old PNMJ was funded for 24/7 support for a six-month period while the NDIA reassessed the family’s needs. In both cases, risks to the wellbeing of carers and evidence about the family’s lived experience contributed to the AAT decisions on funding.

Capacity building

Capacity building budgets, which cover supports like therapy, support coordination, and plan management, do not follow as direct an age-related trend. As the graph below shows, capacity building budgets are at their highest when children are in the early intervention (EI) stream (ages 0–6), as EI is largely about capacity building. For children in the 7–14 age bracket, the average capacity building budget takes a massive dip.

The NDIS will sometimes fund supports that build a family’s capacity to support their child, a principle that is outlined in the NDIS Act.

However, a recent AAT case challenged whether family-focused capacity building is a universally adequate solution, particularly for overworked families. In the case of PMCP, the mother of a 9-year-old successfully argued for 60 hours of support coordination a year. The NDIA’s counter-position was that the 35 hours they had agreed to (it was 15 hours until the very day before the hearing) would allow the support coordinator to build the mother’s capacity to deliver the support herself. The AAT believed that this line of argument rather missed the point. It concluded that the mother did not lack the “skills to undertake these tasks” but had run out of the “physical and mental capacity and energy” necessary.

Raising an interesting point about whether the NDIS’s priority should be only about building capacity, or whether freeing up some capacity should also be a goal.

It's the pub test, baby!

The Joint Standing Committee into the NDIS’s report on planning in 2020 included accounts of parents who felt the planners were making “value judgements” about how they should look after their kids. Defining the responsibilities of parents is fundamentally a conversation about values, and the NDIS has the unenviable responsibility of creating policies that make values-based decisions about how families should live their lives.

When looking for answers about how the Agency has interpreted legislation and created policy, the first port of call is the Operational Guidelines. In relation to s34(e), the guidelines refer to the support an “ordinary community member” might expect family members to provide. But who is this ordinary community member? White? Middle class? Do they or anyone in their family have a disability?

The concept of an “ordinary community member” doesn’t provide practical solutions so much as it highlights the complexity of the challenge.

At what cost? Underfunding and its consequences 

While there are real Scheme sustainability risks if the NDIS were to be too generous with families, it’s time we start talking about the consequences of being too stingy. 

In 2011, the Productivity Commission offered what they stressed was a conservative estimate of the economic benefits of carers returning to work or increasing their hours of paid employment. The commission predicted that this could contribute $1.5bn to Australia’s GDP annually, not including savings in carer’s allowance. This statistic is not hugely reliable in the present day, as we have seen how many of the Commission’s initial predictions have become obsolete due to the redesign of the NDIS and the greater number of people entering the Scheme. However, that figure does provide some sense of the potential economic benefit of supporting carers returning to work.

Currently, 49% of the Scheme’s participants are under the age of 18. The sheer scale of families this issue impacts means that the economic consequences of miscalculating what we expect from parents are far-reaching. Quarterly reports have consistently shown that the rates of carers in the workforce are disappointingly low. We also know that many participants have been reporting significant cuts in their plans over the last year. When a child’s plan is reduced, parents usually step in to provide the support, adding yet another barrier to paid employment. 

Moreover, if we want parents and other carers to return to the workforce, we must examine the complete picture of each family’s life. The average punter at the pub could look at a list of tasks that need to be done for a child and tick off the ones they consider a parent’s job. But that person is unlikely to have a holistic understanding of what it takes to truly support that child. For example, having a disability or a child with a disability comes with oh-so-much (!!!) admin. There’s engaging with the NDIA and service providers, getting reasonable adjustments at school, arranging medical appointments, picking up prescriptions, checking the accessibility of everywhere you go, and so on. Realistically, are parents going to return to the workforce if the planning process does not consider all these aspects of their lives?

Underfunding children’s plans has other economic and human consequences. It increases the risk of carer burnout and children being placed in the child protection system. A lack of early investment can also deprive people with disability of the opportunity to build independence and increases the lifetime cost of supporting them.

Defining the responsibilities of parents is a bit of an evergreen issue in the NDIS. We were discussing it in 2017, and chances are we will still be doing so in 2027. It’s a complex and highly individualised subject, so we are never going to land on the perfect solution that puts the matter to rest. However, that does not mean we don’t have to start looking for some better solutions, as a matter of urgency.