Young people on care: A call for change

Research findings show young Australians want to see increased investment in the care and support sectors, and policymakers should be paying attention, write Laura Davy (@LauraKDavy) and Honae Cuffe (@HonaeHCuffe) from the ANU Crawford School of Public Policy (@ANUCrawford). This article was first published as part of Policy Forum’s new feature section – In Focus: Australia’s policy future – which brings you policy analysis and ideas beyond sound bites. You can view the original article here.

PHOTO: Chris Lawton on Unsplash

The future of Australia’s care and support sectors have been key issues during the 2022 election campaign, with plenty of media coverage of the performance of the National Disability Insurance Scheme and planned reforms to the aged care system. But one group whose voice is often left out of this conversation – and many other policy discussions – is younger Australians.

Pandemic experiences of lost work, mental health challenges and an increasingly unaffordable housing market have seen many young Australians emerge as politically engaged and ready to create change. Given this, and their stake in the future of social care policy as current and future carers and care recipients, policymakers should be listening to what they have to say.

To find out what young people think about Australia’s care and support sectors, we held discussion groups of young people as part of a research project on young people and the future of care.

Early findings show that young people, even those without direct experience of disability, family care or care work, have strong views about care-related policy and service systems.

In the discussions, three main themes emerged around the support young people want to see in place for carers, people with disability, and older people. The participants expressed a wish to see both income support payments increased and further investment in mental health services, including better targeted mental health support for young people and carers.

They also identified the importance of centring the experiences and perspectives of people with disability, carers and families in policy and service design, so that these systems are “empowering them to make the decisions.”

These views were often informed by their experiences and the experiences of those close to them during the pandemic.

The participants confirmed that the loss of opportunities for social interaction at school, work and university was difficult for young people during this period – although some noted that connecting with each other through technology may have been easier for them than for other age groups.

These negative effects were compounded for young people with caring responsibilities. Young carers experienced increased stress due to disability and mental health ‘flare-ups’ under lockdown conditions, anxiety about finances, and the challenges of managing their own distress and their study and work commitments along with those of the family members for whom they provide care.

Mental health was a major concern, particularly for those with care responsibilities. Isolation and the additional anxiety related to COVID-19 made it more difficult for them to find the energy to care for other people. Young people with family members whose health conditions made them more vulnerable to the effects of COVID-19 were terrified of catching the virus and bringing it home.

Many of the young carers in the discussion groups also identified themselves as having a disability or health condition and spoke of not receiving the support that they needed over this period.

But for some, the pandemic offered relief from the stress of making ends meet through the temporary Coronavirus Supplement and the COVID-19 Disaster Payment. The low rate of Australia’s social security payments forces many people to live below the poverty line, but these COVID-19 payments temporarily lifted many people out of highly precarious circumstances.

One young person, who was her family’s breadwinner as well as primary carer, highlighted the profound impact of this unexpected silver lining.

“I think the biggest thing that COVID did was give us more financial help…When that extra cash was coming through, we actually kind of had the money to support ourselves,” she said.

So, what kind of policy change on care are young voters looking for?

One message for policymakers was particularly clear: raise the rate of income support payments across the board. For the participants, this would mean that people with disability and chronic health conditions, and those that support them – including those who fall outside of the eligibility requirements for higher-rate payments – can live with dignity.

The participants also called for more funding for mental health services. Participants mentioned long waitlists for many psychological services and how availability and affordability issues, exacerbated by the pandemic, can impact young people. They called for better responsiveness to young people with caring responsibilities within the school system, as well as mandatory mental health first aid training for teachers.

The young carers wanted better recognition from policymakers, schools and the wider public that caring is a difficult job, often with flow-on effects for education, workforce participation, and mental and physical health.

“I feel like people just need to realise that it is…a very tiring and stressful job…especially since we’re teenagers, we’re still technically kids,” said one participant.

They wanted a ‘bottom-up’ approach to designing and delivering support systems that really engages with the experiences and needs of carers and people living with disability.

Applying for formal support, whether through a Disability Support Pension (DSP) or the National Disability Insurance Scheme (NDIS) was described as an “extremely demanding” process, and inaccessible systems often require even more help to navigate. In some cases this falls to carers, including young carers, who are unfamiliar with government processes.

There was even a warning that young voters are watching for any party considering further ‘stealth cuts’ to the NDIS.

“It shouldn’t be this…top down approach, of them investigating and determining what a family and what this kind of individual needs. [Families and individuals] should be empowered to make their own decisions and figure out how they can best be cared for,” one participant said.

Engaging with young people on the future of Australia’s care and support sectors is critical. Not only are they too heading to the ballot box in large numbers this election, but as caregivers, care workers and people who will need support in the future, they will inherit the consequences of policy choices made now.

Moderator: Lisa J. Wheildon (@wheeliebinit)