Informal support networks; Review process overtaken by a new plan coming in to force - QZHH and NDIA [2018] AATA 1465

A recent decision of the AAT called QZHH and NDIA [2018] AATA 1465 [opens in new page] is helpful for understanding how the NDIA and Tribunal have regard to the role of informal support networks. The decision also explains what happens if the review process for an NDIS support plan is still ongoing when the next plan comes in.

Key points

The key points from this decision are:

•      The NDIA(and the Tribunal) expect informal support networks, e.g. parents, guardians, or carers to provide support to NDIS participants. This must be given consideration when deciding what supports are necessary under the NDIS – see NDIS Act s 31 [opens in new page]. Even if the participant’s needs are complex, the NDIA will still consider what sort of support should be expected from the informal network.
•          The NDIA will need to consider the ‘lived experience’ of carers. That will include any psychological or physical limitations on being able to care for the participant. Carers of NDIS participants should make sure that the NDIA knows about anything that would limit their ability to care for the person. Carers should also make sure that they have evidence of how their personal issues limit their ability to car for the participant.
•          The NDIS Plan review process can take a while. Plans may also have relatively short durations, particularly if a participant’s needs are complex or changing. That may mean that an application to the Tribunal to review a decision of the NDIA may be overtaken by the new plan coming into force. The good news from the Tribunal’s decision is that it is clear that the Tribunal will ‘re-enliven’ an old plan if a new one has come into force while the review process is ongoing. That will mean that the outcome of the review process will not be frustrated by a new plan coming in to place. Carers of NDIS participants should ensure that they stick with the review process. Don’t think that a new plan makes the review process pointless.
•          That said, the relatively short time plan durations can make it difficult for carers to plan going forward. By the time that a plan has been determined, and any internal review process (and possible Tribunal application) has been completed, the next one has rolled around. More of carers’ time and resources will be devoted to plan management and the review process.

Facts

A 5-year-old (the Participant) has had complex health needs and disabilities since birth. These include intractable epilepsy and respiratory illness. Her parents also have their own health problems – the mother has bipolar adjustment disorder (and has her own NDIS support plan) and the father has depression. 

The Participant has had a series of support plans under the NDIS. The support she received included funding for home carers. On 1 December 2016 the NDIA approved a plan (December Plan) that included 16 hours a day of carer support for 39 weeks per year, and 24-hour carer support for 13 weeks per year. 

The Participant’s parents sought an internal review of the NDIA’s decision. They wanted 24/7 carer support for the Participant. They also wanted back-up nursing support in case carers were not available for shifts – if carers were not available then the parents had to take care of the Participant themselves. The family lived in Geelong, and it was difficult finding sufficient carers in a regional area, especially given the complex needs of the Participant.

Since the parents started the internal review process, the Participant has had 5 further NDIS plans. Each of these plans has had a duration of between 1 and 3 months. In the most recent plan, the Participant was receiving carer support for 16 hours a day 365 days of the year, and 8 nights of short-term accommodation per month.

Issues

1. What happens if a plan under review is overtaken by a later plan?

The first issue that the Tribunal had to consider was whether it could review the December Plan, given that it had been overtaken by subsequent plans. The Tribunal decided that it could. The Tribunal’s decision about the December Plan would result in the Plan being ‘enlivened’, and once the Tribunal made its decision the December Plan (along with whatever modifications the Tribunal made) would be in force until it was replaced (see paragraph 52).

A review of an NDIS plan can take several months, from internal review through to review by the Tribunal. In the meantime, the Participant’s needs may have changed, and there may have been several further plans implemented. The Tribunal’s decision in this case has the positive outcome that a new plan coming into effect does not make the review of the old plan pointless. Parents and carers and NDIS participants should not give up on a review just because a new plan has come into effect.

At the same time, if a subsequent plan is more ‘generous’ or is better suited to addressing a participant’s needs, then that might mean that the participant does not need to continue with the review process, or an application to the Tribunal. It will be interesting to see whether a participant will be given a choice by the NDIA between going back to an old plan (as reviewed and modified by the Tribunal) or keeping a current plan, if the participant thinks the current plan is working better.

On a related issue the Tribunal had to consider how long the plan would remain in place once it had reviewed it. The parents of the Participant asked that it remain in place for 2 years, saying at paragraph 114: 

All of the Applicant’s NDIS plans to date have been reviewable within 12 months or less. Insecurity of funding for carer support is a cause of major stress to the family. [The Applicant’s parents] are unable to plan for future work or studies with any degree of confidence. Each review of the plan, and each internal and Tribunal review of the Agency’s decisions, involved a lengthy and time-consuming process, which often last many months. This exacerbates the incredible strain that the family is already under.

The NDIA wanted the plan to last for 6 months, because the Participant would be starting school and that change in circumstances would mean that her plan should be reviewed.

The Tribunal stated that “the review period should be based on a consideration of the likely degree of stability of the circumstances surrounding the family circumstances of the Applicant and also the stability of her needs” (see paragraph 251). It decided that 12 months struck the right balance.

I understand why the NDIA would want a short duration for support plans, particularly if the participant receives a lot of resources, or has complex needs. Any change in circumstances that might result in a participant needing less help would be latched onto by the NDIA. At the same time, it is easy to understand why the parents in this case found it frustrating – how are you expected to plan for provision of care when you don’t know what your budget will be in 6 months’ time? Although the Tribunal extended the time period to 12 months I would hope that there is a move towards longer plan durations, to allow carers to adequately plan, and so that carers are not constantly having to go through the plan review process.

2. What will the Tribunal take into account in deciding what support should be expected from the informal support network?

The NDIA argued that the parents should be required to provide up to 8 hours of care per day for 39 weeks of the year because it was normal for parents to provide substantial care and support for their children (see paragraph 141). The father worked two days a week; on the other days he could look after the Participant with the mother’s help.

The Participant’s parents argued this was unreasonable. The mother’s bipolar adjustment disorder made it impossible for her to deal with the stress and strain of looking after the Participant’s complex needs, including responding to seizures. The mother’s evidence included a sad account of the impact that looking after the Participant has had on her health:

As time rolled on everything started to unravel. The few carers that we did have were working far too many shifts and started to call in sick more and more. With decreasing care hours [the Father] had to take carer’s leave and started to miss most of his shifts. In order to cope with the increased burden that placed on us, the only time I could do my studies was later in the night, and my sleep started to decrease. Our house became more stressful and I started to feel overwhelmed, not only by the direct impact of the lack of care for [the Applicant], but also by the resultant stress caused by it, particularly with [the Father] who was irritable all the time. Finally, I cracked and had an emergency admission to a psychiatric hospital [for a period of 16 days in April 2017]. I had a further admission a month later [for a period of seven days in June 2017] and had to withdraw from studies. This outcome was not only devastating for me but also for [the Father] and [the Sister] as I was unable to participate in the home environment.

The mother provided evidence from her psychiatrist of the need for her to have adequate sleep so that she could take care of the Participant. She also gave evidence of the importance of being able to study at university in terms of managing her mental illness.

Ultimately, the Tribunal decided based on the evidence that it was not reasonable in the circumstances to expect the mother to care for the Participant independently, because of her mental illness. At the same time, it was reasonable to expect the father to care for the Applicant for at least part of the time. The Tribunal decided that it would not be reasonable to expect the father to care for the Participant on those days that he was working, and the father should also have a ‘weekend’ (he worked variable shifts) of 2 days. The Tribunal found that there should be carer support for 24 hours a day for 4 days each week, and 16 hours a day for 3 days a week. The Tribunal deducted 800 hours of care per year to reflect the fact that the school provided a carer and nurse while the Participant was attending school.

This case is a useful example of how the Tribunal approaches the question of what informal supports should be expected to be provided. Importantly, the Tribunal must consider the ‘lived experience’ of the participant and their carers – see Participant Rules, r 3.2 [opens in new page].  That will include the particular limitations of the carers, such as their mental health. For that reason, it is important for parents and carers of NDIS participants to tell the NDIA and the Tribunal about anything that might limit their ability to provide support to the participant. This will help to establish a need for a greater level of support.

At the same time, the NDIS is unfortunately not a cure for the incredible stresses and pressure that carers find themselves under. There will still be an expectation from the NDIA that these ‘informal supports’ continue to be provided.