PhD research story: Carers struggling to navigate the NDIS

It was when struggling to navigate the National Disability Insurance Scheme (NDIS) as a carer for her adult daughter that Amaya Alvarez decided to apply for a PhD scholarship to research the scheme’s impact on mental health carers.

‘When systems of social support change, the implications for families and people providing support can be quite profound,’ she says.

Amaya’s daughter, who is now in her 20s, first experienced mental illness in her early teens.

‘She is still struggling and working on recovery and it ebbs and flows and it requires me being present, not necessarily always doing really assertive management, sometimes just keeping the rhythm of the day and being there in the background. But always vigilant.

‘It has involved quite intense periods of hospitalisation and navigating high levels of distress so I guess I have insight into what can be involved for ordinary people when someone they care about develops complex mental health issues.’

Amaya has often felt ill equipped and poorly supported in her role of carer, which has also impacted on her other children and her ability to maintain engagement in paid work. The health system is crisis driven and client focused but does not prioritise supporting carers and family members, she says.

Whilst the NDIS’s promise of assisting those with a disability to lead an ‘ordinary’ life sounds promising, Amaya knows from experience that proving eligibility is particularly confronting for those in the mental health space, which has traditionally had a focus on recovery.

‘The NDIS is about permanent and enduring and unrecoverable disability, so you need to present the worst day of the person you support rather than talking up the positives. If the person with the disability doesn’t want to go through that process of proving their disability, you are not going to get into the scheme,’ Amaya says.

‘The other thing is that only 10 per cent of people with an enduring psychosocial disability that go through the process actually get funding. So, there is a sense that you can go for it, but you don’t have much chance.’

Those who do receive the NDIS have their funding reviewed every 12 months, which can cause great uncertainty for the person receiving support and the carer, she says.

The focus on consumer choice means some recipients are too unwell to be able to use their NDIS packages.

‘They can ring up and say, “I don’t want my worker to come out today”. But what they often need is really skilled mental health workers going out and providing outreach and coaching them into the world – even if it’s just helping them to get out of bed. This is delicate complex work.

For her research, Amaya is interviewing carers, and the mental health support and advocacy staff who work with them, about their experience of the NDIS. She is also incorporating her own experience as a lived experience researcher into her study.

‘My preliminary findings are that, for carers, the NDIS in the mental health space has been problematic. For some carers it is increasing their workload and the uncertainty of the annual review is also increasing their stress and anxiety; even if they can see there are good things happening with the NDIS. Some Commonwealth funded supports for carers have been lost in the transition to the NDIS, such as carer respite. Carers used to be able to receive these packages regardless of whether the person they supported was engaged with services or not – they had supports in their own right.

‘Informal care and support is becoming harder for people to manage. It is becoming more complex, more intense,  almost like giving paramedical support. People are losing the ability to just be the parent, or the partner, or the daughter, or the son, and they become this kind of informal/formal carer. Under the NDIS the consumer is framed as having a right to an ‘ordinary’ life. I don’t think the people providing support, the carers, are viewed as having similar rights.

‘There’s a lot of carers feeling they have to work really hard to learn how to work the system, and that can take a lot of time; learning the language of the NDIS, learning to navigate the processes, and that is putting extra pressure on people who already don’t have a lot in reserve.’

Amaya will complete her research, Reasonable and Necessary support? Mental health carers’ experience of the National Disability Insurance Scheme in the context of carers’ needs, recognition and rights, in mid-2020.