Unpaid carers are integral to the sustainable support of people with care needs, including people living with MS. However, many unpaid carers experience multiple and complex barriers to social inclusion, economic security, education, and employment due to the significant demands placed on them as ‘carers’.
In addition, carers often don’t feel recognised by society or government. This is despite legislation aimed at recognising carers, with the Carer Recognition Act 2010 being in place for over a decade.
In June, the House of Representatives Standing Committee on Social Policy and Legal Affairs opened an Inquiry into the recognition of unpaid carers aimed at ‘strengthening and modernising the Carer Recognition Act’.
The Committee sought to understand the effectiveness of the legislation in raising recognition and awareness of the unpaid caring role and grappled with questions about the value of unpaid care, the needs of diverse cohorts of carers and the importance of carer-friendly workplaces.
In launching the Inquiry, Ms Peta Murphy MP said, ‘a lot has changed since the Act was established in 2010, and demographic shifts suggest there is a growing gap between demand for care and the capacity of Australians to take on caring roles.’
MS Australia provided a submission to the Inquiry in August. Our recommendations clearly captured the attention of the Committee, as we were invited to provide evidence at a public hearing in October. Public hearings provide an opportunity for Members of the Committee to ask, often complex, questions.
MS Australia CEO Rohan Greenland and Senior Policy Officer Sarah Clifton participated in the public hearing and explained how, due to the diversity in disease presentation and progression, people living with MS require a broad range of supports that often include care delivered by family and friends.
In fact, 87% of people living with MS have someone (unpaid or informal) who is their main source of support. With over 33,000 people living with MS in Australia, we estimate that there are 29,000 MS carers across the country. Supports may include assistance with everyday tasks such as personal care, life administration, providing transport, and contributing emotional support.
The Committee were very keen to hear our thoughts on the definition of an unpaid carer. We shared with the Committee feedback from MS Member Organisations, highlighting that many family members and friends who provide care for people with MS don’t identify as carers. A carer’s self-identification as a carer is crucial to seeking support, information, and resources.
The current definition doesn’t capture the experience and diversity of MS carers, and this unintentionally creates a barrier as people don’t see themselves in the definition. Particularly with MS, as with other chronic illnesses, there may be multiple carers providing care for a person with care needs rather than one primary carer.
Caring for people with chronic illness comprises a significant group of carers who are more likely to have a prolonged caring role. Their value and contribution are poorly recognised by society and government.
Caring can be meaningful and rewarding, but the time and effort required to provide care requires significant adjustments to a carer’s life. These challenges can impact the carer’s wellbeing and ability to achieve their own goals.
Without authentic recognition and practical support, unpaid carers are placing their health and wellbeing at risk and may not be willing or able to continue with their caring role.
The Committee wanted to understand the usefulness of the legislation and what MS Australia would like to see in a reformed Carer Recognition Act. We know that many people in the MS community are unaware of the Carer Recognition Act and that carers need more than legislation to improve their lives.
Further initiatives are needed, including public education and awareness, more funding for support programs for carers and strengthening of the reporting obligations on public service agencies on carer support and engagement.
We advocated for embedding the voices of carers through a co-design process, the Committee members asked questions about the MS Plus Carers Reference Group and Carers Strategy.
While we eagerly await the findings of the Inquiry, the Government has announced two initiatives during National Carers Week that are a step in the right direction for carers.
A new National Carers Strategy has been promised by the end of 2024 with a $3.8 million investment. While light on detail, the announcement looks encouraging, with mention of a consultation process to capture the diversity of carers.
Additionally, the Government launched the Carer Inclusive Workplace Initiative, in partnership with Carers Australia, to ensure carers are better supported to participate in the workforce.
Both these policy announcements align with key recommendations from MS Australia’s participation in the Unpaid Carer Inquiry.
MS Australia expresses our gratitude to our state and territory MS Member Organisations for providing their expertise and feedback to this submission.
Through their input, we were able to elevate the voices and lived experiences of MS carers directly to the parliamentarians chairing this Inquiry.