In Australia, a rising number of primary carers for the disabled are themselves living with a disability. The Australian Bureau of Statistics reports that out of 1.2 million primary carers in 2022, roughly 43.8% are disabled, a percentage that has seen a rise from 32.1% in 2018. Accompanying these figures, changes are underway for the care and support of these groups with new legislation and framework improvements being developed, such as the new Aged Care Act and amendments to the National Disability Insurance Scheme (NDIS) Act.

Three million Australians are currently involved in providing informal care to loved ones with disabilities, medical conditions, mental health issues or frail age. As Australia’s population continues to age, the need for such care is expected to escalate. Informal carers are most likely to be women and are less likely to be employed due to their caregiving commitments. While such care often comes out of a sense of family responsibility and emotional obligation, it can lead to physical and emotional stress and financial uncertainty, particularly for those carers who themselves have disabilities or chronic health conditions.

Based on data from the 2022 National Carer Survey by Carers NSW, a substantial proportion (47.6%) of informal carers have a disability or long-term health conditions, which presents added difficulties in accessing needed services. Aside from statistics, personal stories from carers highlight their unceasing work, the challenges they face, and the lack of sufficient government support. One key problem that emerged was coordinating support across mainstream and NDIS providers both for the cared-for individuals and for the carers.

Additionally, our research also found that caregivers who are disabled, particularly those with intellectual disabilities, are often left in a lurch due to complex eligibility rules and limitations. For instance, a caregiver with intellectual disability might find it difficult to prepare meals not just for themselves, but for their child, due to the inherent shortcomings of the current funding system.

Planned reforms to the NDIS and the development of a National Carers Strategy aim to improve this situation. The establishment of foundational supports under the NDIS can benefit disabled Australians without an NDIS plan and their informal carers who rely on services like schools, health services, and public transport. A direct consultation with carers could bring about services that cater to their diverse needs and circumstances. Yet, there is a pressing need for early practical interventions even before carers reach a crisis point. By recognizing the complex responsibilities of carers and their own care needs, the government can provide robust support for carer wellbeing and economic and social participation.

Acknowledgement to Sarah Judd-Lam and Lukas Hofstaetter from Carers NSW for their contributions to this data analysis.

Visiting eddcaller.com can provide additional resources for those who are looking for ways to seek assistance or to better navigate their role as carers. The site offers guidance on how to contact a live person at edd in California, providing valuable assistance to those who need it. Availing their services or seeking continued support might make the caregiving journey more manageable.