2. The Carer Recognition Act
   1. Carers report they are significantly under-recognised and excluded in workplaces, communities, by service providers and in the health sector.[1] This has not improved since the CarerRecognition Act 2010 (the Act) was established. Carers describe feeling like a burden, invisible, frustrated, fatigued, isolated, overlooked, hopeless and undervalued.[2]
   2. This chapter considers the effectiveness and limitations of the Act and its associated Statement for Australia’s Carers (the Statement). It examines:

• the meaning of carer
• the Statement
• international recognition of carers
• obligations on the public service and associated providers.

An outdated and aspirational Act

2.3While the Act was an important step forward at the time,[4] it has been widely criticised because it lacks enforceability, has a narrow focus and contains weak language. Thirteen years on, the Committee heard that:

• the Act has not had a significant impact on the recognition of carers because it does not create any rights or duties
• its obligations on public service agencies are limited, piecemeal and unenforceable (some calling it a ‘box ticking’ exercise)[5]
• there are no consequences for failing to fulfill these obligations
• there are no appeals or complaints mechanisms
• there are not enough measures in place to support carer recognition initiatives.[6]
  4. The Act is limited in its capacity to affect change because, as the Department of Social Services (DSS) noted, it only aims to create a sense of obligation on the part of public service agencies to observe its principles.[7] This limited objective is concerning because the consequences of a lack of recognition and awareness of carers are far-reaching. Kiind said:

If the current Act were effective in driving the changes it sought, then our organisation would not be seeing the daily and long-term impacts of the low recognition of unpaid carers and the consequences for families, including high levels of parental stress, burnout, low workforce participation, relationship breakdown, and financial hardship.[8]

2.5Every state and territory in Australia have enacted their own carer recognition legislation. However, there are inconsistencies in language and obligations and varying definitions of the term carer that can create barriers for carers to self-identity and access appropriate supports in their jurisdiction.[9]

2.6For instance, the Australian Capital Territory (ACT), Victorian, and Tasmanian acts explicitly recognise informal kinship carers.[10] The Act and the other state and territory acts do not specifically address this. None of the acts grant legal rights to carers, and in most cases, they explicitly state that their provisions are not legally enforceable.[11]

2.7Similarly, the obligations on the public sector, ‘public sector care agencies’ and funded providers are inconsistent across jurisdictions. NewSouth Wales (NSW), Queensland and Western Australia (WA) have advisory bodies established under their respective acts, and all jurisdictions except Queensland and Victoria specify a review period.

2.8There are disparities in the definition of carer across other federal legislation and policy relating to disability, aged care, mental health and social services. This can lead to confusion about eligibility in service settings and hamper efforts to raise awareness about the role of carers.[12]

2.9The Committee heard that the Act and the Statement should be strengthened to create meaningful and practical recognition; that the Act be rights-based and more inclusive of the diversity of caring roles; and that public service agencies and associated providers should have stronger legal obligations.

Meaning of carer

2.10There was considerable support for modernising the meaning of carer, under section5 of the Act, to be more inclusive of the diversity of caring roles. There was concern that the current definition may prevent carers from self-identifying and therefore limit their awareness or opportunities to seek carer‑specific supports, resources and information.[13]

2.11There was strong support for reframing the definition in terms of a ‘care relationship’, as used in the Carers Recognition Act 2012 (Vic)and Carers Recognition Act 2021 (ACT).[14] For example, Carers Victoria said the focus on the recognition of care relationships is helpful because it:

… accommodates the diversity, and sometimes multiplicity, of caring roles that a person might have. With some sectors of our society not identifying with the language of carer, such as multicultural communities, we sometimes find that the language of care relationships provides us with some additional options …[15]

2.12Carers WA said that any addition of a ‘care relationship’ in the Act should be clarified to avoid confusion and supported the inclusion of examples, such as those used in the ACT Carers Recognition Act 2021.[16] Carers NSW suggested instead that the Statement is a better place to address care relationships. Carers NSW was concerned that ‘moving towards a more relational definition in the Federal legislation might water down the ultimate intent of the Act’.[17]

2.13The Committee heard that the current meaning of carer assumes that there is a single primary carer and does not consider that an individual may be receiving care and support from multiple carers. In situations where families care for children with disability or a chronic and terminal illness such as cancer, there may be ‘a network of family carers’ contributing different aspects of care.[18] In First Nations communities, caring responsibilities are generally shared among several family and community members through kinship structures.[19]

2.14The meaning of carer in the Act may not fully reflect the range of assistance and support carers provide to the people they care for, or the challenges carers experience. Merri Health and MSAustralia, among others, noted that the caring role can be varied and may include life administration, emotional support and transport.[20] Merri Health said that caring can also include:

… navigation of the health and welfare system, and can often be likened to a case management and support coordination role. A carer often also plays a strong advocacy role for the care recipient, which is not currently captured within the definition.[21]

2.15There was support for updating some of the terminology in section 5 of the Act. The Committee heard that the term ‘frail and aged’ assumes that all care recipients who are aged are also frail and does not consider that older people may need ongoing care before they might be recognised as frail.[22] Merri Health suggested that the term is reworded to ‘frail and/or aged’.[23]

2.16There are concerns the term ‘mental illness’ is outdated. Carers Tasmania supported the use of the term ‘mental ill health’ in the Tasmanian Carer Recognition Act 2023.[24] Queensland Alliance for Mental Health (QAMH) and Arafmi advocated for the use of strength-based language such as ‘people facing mental health challenges’ or ‘people experiencing or recovering from mental health challenges’.[25]

2.17Carers NSW and Carers WA proposed that the meaning of carer should include clarification that individuals receiving carer concession payments are regarded as unpaid carers, ensuring that individuals are not discouraged from self-identifying as carers.[26] The ACT and Victorian acts include provisions to this effect.

2.18Stakeholders emphasised the importance of ensuring that any amended definition is consistently applied across all state and territory carer recognition legislation, as well as across other federal legislation and services relating to carers.[27] However, DSS noted that ‘it is within the remit of states and territories to construct the legislation as they wish’ and the Commonwealth does not have ‘clear levers to drive consistency with the states.’[28]

2.19There was support for the meaning of carer in the Act to be amended so that it values and recognises the contributions of all carers regardless of their relationship to the person they care for.[29] The current meaning of carer does not explicitly recognise the diversity of carers such as:

• young carers and sibling carers
• First Nations collective kinship care
• culturally and linguistically diverse (CALD) carers
• carers who identify as lesbian, gay, bisexual, transgender, intersex, queer/questioning, asexual and other sexually or gender diverse identities (LGBTIQA+)
• carers of those with an alcohol or other drug dependence.

Young carers

2.20Young carers are children and young people under the age of 25 who currently provide, or intend to provide, unpaid care, assistance or support to a family member with mental illness, chronic illness, disability, substance dependency or conditions related to aging.[35] It is estimated that there are 246,000 young carers in Australia, with approximately 50,000 under the age of 15.[36] These numbers are likely to be an underestimate due to the invisible nature of caring by young people and ‘low rates of self-identification’.[37]

2.21Young carers experience unique challenges as one of Australia’s most at-risk groups of young people.[38] Little Dreamers Australia, a peak body established to improve the quality of life of young carers, stated that:

Young carers are required to work alongside the demands of their caring role whilst attempting to navigate their way through adolescence, often significantly impacting their ability to connect with other young people and gain pivotal space to form their sense of identity.[39]

2.22Young carers are largely under-recognised because they see their caring roles as a normal part of family life.[40] A lack of a consistent, formal definition of the term ‘young carer’ across legislation and policies in Australia creates confusion and hinders young carers’ ability to self-identify. Little Dreamers Australia said this results in funding issues, unequal access to support services, fragmented service and can have psychological and emotional impacts on young carers, such as stigmatisation and isolation.[41]

2.23Young carers face many barriers preventing them from seeking help. Most services, legislation and policies are designed for adult carers, which means that young carers can miss out on accessing services such as Carer Gateway and Centrelink.[42] Other barriers include a lack of awareness and understanding of how to access services, family fear of children being removed, issues with accessibility due to transport and cost, and consistency of service delivery.[43]

2.24There was support for amending the Act to better define and specifically identify young carers.[44] Little Dreamers Australia argued that a universal definition of young carers should be developed to identify and support ‘potential young carers at an early stage, which can have several benefits related to early intervention.’[45]

2.25Ms Jacqueline de Mamiel, a Young Carer Participant at Little Dreamers Australia, noted that having a label of ‘young carer’ encouraged her school and extracurricular activities to accommodate the supports she needed. Ms de Mamiel stated that ‘it's really helpful to have a label that articulates that this is an ongoing role for me and a proper responsibility’.[46]

2.26Internationally, the United Kingdom (UK) provides advanced recognition of young carers through various legislation and policy and service frameworks that acknowledges, recognises and assists young carers.[47] For example, the Children and Families Act 2014 (UK) includes provisions that require ‘local authorities to identify and support young carers’ and to promote ‘cooperation between education, health and social care services’ to meet their needs. Further, the Care Act 2014 (UK) includes rights to ‘assess and support children and young people from taking on excessive or inappropriate amounts of care’.[48]

2.27Little Dreamers Australia noted that, in addition to these laws, there is broad ‘awareness and recognition of young carers amongst public, policy makers and professionals’ in the UK and multiple services and interventions dedicated to young carers nationwide.[49] Little Dreamers Australia argued that similar legal recognition in Australia would safeguard young carers’ ‘rights, wellbeing and future prospects’[50], and ensure that their needs are acknowledged. Recognition may also ensure that appropriate support mechanisms are in place to prevent potential negative consequences on young carers’ education, health and overall development.[51]

Impact of caring on young people

2.28Caring significantly impacts a young carer’s education. Young carers have lower attendance at school than non-carers and are less likely to complete Year 12.[52]Young carers may come to the attention of the school due to challenges and behaviours such as:

• poor attendance or truancy and failure to stay on top of school assessments
• victims of bullying
• a strong desire to have mobile phones handy
• being unkempt
• anxiety and/or depression, suicidal ideation or self-harming
• financial constraints and being unable to attend school outings, purchase school uniforms or appropriate footwear
• feeling anxious about their family members at home
• social isolation.[53]
  29. Young carers who care for family members with mental illness or alcohol or drug use have significantly lower educational engagement.[54] The stigma associated with mental illness prevents many young people from disclosing what is going on at home.[55]
  30. Siblings of young people with a disability, medical condition or mental illness find that there are very few psychosocial supports or other services that recognise their unique experiences.[56] Siblings are often overlooked in young carer policies and programs and need better access to appropriate respite and bereavement support services.[57] In addition, siblings rarely get a break from their caring roles as the needs of their sibling often come first.[58]
  31. Redkite reported that siblings of a child diagnosed with cancer often face considerable unmet needs. For example, the sibling may no longer have constant access to their usual primary carer, travel to treatment centres cause siblings to face extended periods of school disruptions and loss of contacts, and siblings may be withheld from school and have reduced social interactions if the sick child is immunocompromised.[59]

First Nations collective kinship care

2.32Understandings of care in First Nations communities are holistic, complex and intersectional and are shaped by culture, kinship relationships and historical context.[61]

2.33The term ‘carer’ may not fully represent what First Nations people do for family.[62] The Australian Human Rights Commission (AHRC) uses the term ‘collective care’ to describe First Nations conceptions of care and support. It said:

The term ‘collective care’ is used to describe the shared responsibility of caring for family, community, and Country, and signifies that the act of care is a means to transfer knowledge and culture intergenerationally. In this way, care and support do not only exist within the formal paid economy, but also encompass culturally grounded practices and customs that enable communities to be safe, happy and connected through kinship and Country. In many ways, ‘care’ is treated as an ethic or value that is held by community to give and receive love, kindness and support, rather than an obligation or occupation.[63]

2.34First Nations people are often invisible, unrecognised and experience a lack of understanding and responsiveness from formal and mainstream services.[64] Generations of cultural differences, discrimination, accessibility issues and historical mistrust are barriers to First Nations people accessing supports, employment and services, which can lead to poor health and wellbeing outcomes, mental health and addiction challenges, and unemployment.[65] Gayaa Dhuwi (Proud Spirit) Australia said that ‘these factors contribute significantly to the health, life expectancy, disability, and need for care in First Nations communities’.[66]

2.35While the proportion of First Nations people providing unpaid care is 1.3 times the proportion of non-Indigenous Australians, this figure is likely to be an under-representation due to First Nations people not identifying as carers, and the Australian Census not recognising kinship care.[67] More First Nations women (18percent) than men (12 per cent) are carers.[68]

2.36The AHRC warned that First Nations women and their families are at risk of experiencing a ‘poverty trap’ as insufficient income for their caring roles ‘creates the risk of further harm to health and wellbeing, which redoubles the load of care’.[69] The National Aboriginal Torres Strait Islander Women's Alliance (NATSIWA) argued that the current definition of carer in the Act ‘does not recognise the important contributions that Grandmothers, Mothers, Aunties and Sisters have always played in looking after children and community.’[70]

2.37The AHRC, among others, argued that the definition should be broadened to ‘recognise the full spectrum of care’ provided by First Nations people, including ‘collective care models, and unpaid and informal caring duties, including domestic work and duties performed by paid carers that go beyond their formal responsibilities’.[71]

2.38The AHRC added that the Act should:

… broaden its definition of the roles and responsibilities of carers to acknowledge their right to provide and receive care aligning with cultural practices and knowledge, and that supports culture, language, identity and self-determination as dictated by the United Nations Declaration on the Rights of Indigenous Peoples.[72]

Culturally and linguistically diverse carers

2.39Carers from CALD backgrounds face unique and significant challenges in Australia primarily due to members of these communities not identifying with the term ‘carer’, resulting in many CALD carers being hidden and unrecognised.[73] TheEthnic Communities' Council of Victoria (ECCV) said:

In many non-Western cultures, looking after one’s relatives is commonly seen simply as one of life’s responsibilities, and not something for which special assistance or financial compensation should be sought. Many languages do not have a word that that translates as ‘carer’, since caring for family members is presumed to be part of the family role.[74]

2.40CALD carers comprise between 25 and 30 per cent (roughly 500,000) of all carers in Australia.[75] As well as language, religious and gender barriers, CALD carers often face:

• Stigma and shame, including stigma associated with disclosing certain disabilities or health conditions. For example, some parents may not wish to disclose that their child has a disability, and adult children may not want to tell their community that their parents have dementia.[76]
• Apprehensions about how personal data will be collected and used, due to past experiences of discrimination or trauma, cultural beliefs, or an unwillingness before rapport has been built.[77]
• Increased isolation, loneliness, and poor mental health outcomes.[78]
• Cultural rules or obligations relating to how someone with a disability or an older person is cared for, who performs a caring role, and what it entails.[79]
• Lack of information and educational materials on support services available in different languages and lack of access to interpreters.[80]
• Limited access to culturally appropriate services and avoidance of carer support groups due to differences in understanding or not wanting to discuss family business.[81]
• Implicit and explicit racism and prejudice in care settings leading to lack of cultural safety.[82]
• Lack of services for small or emerging communities in regional, rural, and remote areas.[83]
  41. Carers from CALD backgrounds may be expected to take on additional advocacy roles, such as acting as an interpreter or translator with clinicians and health care workers.[84] This requires carers to understand and interpret complex, personal and often distressing health information, such as details about prognoses or whether a treatment is working, and can impose difficult ethical, cultural and emotional pressures on carers.[85] These additional responsibilities can result in burnout and a lack of appropriate care being provided.[86] Furthermore, if carers have low language or digital literacy skills themselves, they may not be aware of existing support services and respite options and how to apply for them.[87]

Carers who identify as LGBTIQA+

2.42For some carers who identify as LGBTIQA+, their caring role, identity, experiences and relationships are met with stigma and discrimination when attempting to access services.[88] It is estimated that between 15 to 30 per cent of people who identify as lesbian, gay, bisexual or transgender (LGBT) are currently in caring roles.[89] Around one-third say that being LGBTIQA+ ‘affects how and when they access support services’.[90] A lack of consistent population-level data on LGBTIQA+ carers prevents the development of evidence-based policy and services that address their specific needs.[91]

2.43Additional concerns and challenges for carers who identify as LGBTIQA+ include:

• increased risk of experiencing moderate to high levels of psychological distress (60.3 per cent) compared to other carers (48.1 per cent) in 2022[92]
• increased social isolation and lack of access to appropriate LGBTIQA+ specific carer support groups and services
• a fear and distrust of accessing formal health support services as they do not feel accepted or respected (only 66 percent of LGBTIQA+ people have a regular general practitioner [GP] compared to 81 per cent of the general population) leading to reduced disclosures of full mental health and wellbeing circumstances
• limited access to affordable and inclusive services
• invisibility of their carer role within some LGBTIQA+ communities
• financial disadvantage and limited job opportunities.[93]
  44. GenWest, among others, reported that discrimination and stigma can arise when LGBTIQA+ carers and same-sex family members rely on their ‘family of choice’ as their primary source of support, but they are not legally authorised as the next of kin to make decisions.[94]
  45. The Queensland Nurses and Midwives’ Union suggested ‘ensuring there is an option on paperwork where LGBTIQA+-related questions are asked’ and more training for staff who provide services and supports, can enhance inclusion.[95]

Carers who support a person experiencing alcohol or other drug dependence

2.46There was support for the meaning of carer in the Act to be expanded to formally recognise carers who care for a person experiencing alcohol or other drug dependence, consistent with the Carer Recognition Act 2023 (Tas).[96]

2.47Families and carers can often face stigma and isolation[97], and the inadequacy of services for those with a dependence may lead their carers to believe that they too are ineligible for support.[98]

2.48Family Drug Support said carers who care for a person with alcohol or other drug dependence are ‘not very well understood by the health system in general’, and many ‘feel responsible and to blame for their family member’s drug dependence, which presents barriers to their ability to seek help and engage in both informal and informal support systems’.[99]

2.49Carers Australia noted this cohort have particularly low wellbeing and the person they care for is ‘least likely to access help of a medical or other support service’.[100]

2.50Carers Tasmania said that including this cohort in the meaning of carer can ‘reduce stigma and ensure that as many carers as possible can access support’.[101]

Care that goes beyond what would typically be expected in a relationship

2.51While there was some support for the caring of children to be recognised as care work in the Act[102], there was broad agreement that the definition of carer should be limited to care that goes beyond what would typically be expected in a familial relationship.[103] Carers Australia noted that there is already ‘a lot of legislation and programs out there covering families.’[104]

2.52Some stakeholders also proposed that informal kinship carers and foster carers should be explicitly recognised in the Act. Informal kinship carers are family-based carers within a child’s extended family or close friends of the family known to the child. Informal kinship carers do not provide care under statutory orders of the state and territory child protection services and are not eligible to receive carer payments.[105] Foster carers provide temporary housing and care for children who are unable to live safely with their parents and receive little or no carer payments for doing so.[106]

2.53Informal kinship carers and foster carers are not explicitly recognised in the Act but are covered by the definition if the child they care for has a disability, medical condition or mental illness.[107]

2.54While ‘a large proportion of kinship care in Australia is informal’[108], this cohort is a ‘little-recognised group with significant unmet needs for support’ and are predominantly women and around 50 per cent are grandparents.[109]

2.55Carers Tasmania and Kin Raising Kids Tasmania Inc., among others, recommended that the definition of carer in the Act be amended to specifically recognise informal kinship carers.[110]

2.56Carers Australia and Carers NSW noted, however, that care provided by informal kinship and foster carers should not be considered as care that goes beyond what would typically be expected in a relationship and did not support their inclusion in the Act.[111] Carers NSW added that ‘these groups would be more appropriately recognised and supported through their own legislative or policy instruments’.[112]

The Statement for Australia’s Carers

2.57Schedule 1 of the Act provides the Statement, which is described by DSS as ‘ten key principles for how carers should be treated and considered in policy, program and service delivery settings.’[113]

2.58Many consider the Statement to be vague and abstract, containing no call to action and far from being realised.[114] Lived Experience Australia Ltd (LEA) described the Statement as ‘a toothless piece of aspirational legislation with little or no impact on achieving the intent of raising recognition and awareness of the unpaid caring role’.[115]

2.59There was general agreement that the Statement does not capture the genuine experiences of carers, primarily because many carers do not receive the supports and services they need, and it lacks clarity and practical actions that improve carers’ lives.[116] For example, a former carer said:

The key principles should be more specific and provide detailed expectations of how those principles can be achieved. Without this, the government and other accountable agencies can all too quickly ignore. They would also be more meaningful and memorable if more specific.[117]

2.60All state and territory carer recognition legislation feature similar principles as the Statement. The Northern Territory, Tasmania, NSW, South Australia, Queensland and WA have carers’ charters. Victoria and the ACT’s legislation have ‘care relationship principles’ aligned with their use of the term ‘care relationship’.

A human rights-based approach

2.61There was considerable support for strengthening the Statement to incorporate a human rights-based approach, in a similar way that Australians receive rights through anti-discrimination and employment legislation.[118]

2.62The Committee heard that human rights in Australia are currently legislated in an inconsistent and piecemeal way. This complicates the recognition of carers’ rights and efforts to overcome the other difficulties, marginalisation, and discrimination that carers face. The Parliamentary Joint Committee on Human Rights is currently inquiring into Australia's human rights framework and a report is expected in March2024.[119]

2.63The McCabe Centre for Law and Cancer emphasised that a human rights-based approach ‘centres the dignity of a person’[120] and added that it ‘leads to better decision-making because it provides a way for lawmakers, policymakers and those involved in service delivery to think upfront about what the needs of carers are’.[121]

2.64Many stakeholders provided examples of what a modernised and rights-based Statement should include. For example, LEA shared the discussions it had with a young carer who described what human rights, to them, looked like:

… the right to have a childhood and not to be the parent to a mother or a younger sibling all the time; the right to education, peer relationships, future employment aspirations, career choices and other identities; the right to ask for help and know where to go; that services should reach out and not just expect family to always be the one reaching out for help; the right to dignity and privacy and how the various agencies and schools, for example, involve work with the young carer; the right not to be a passenger captured by systems; and the right to be taken seriously for their lived experience, once services step in.[122]

2.65Other suggestions to improve and strengthen the Statement included:

• a statement that reflects the intersectionality of carer identities and recognition that discrimination, racism, ageism, ableism and sexism can contribute to poor health outcomes among carers[123]
• a statement that requires the consideration of the wellbeing of young carers in developing policy and practice[124]
• greater inclusivity of gender identity and sexual orientation (for example, replacing ‘sex’ with ‘gender identification’ in Statement 1)[125]
• a statement that includes improved accessibility and affordability of self-care services and respite care[126]
• the right to contribute to and participate in the development of health and social care policy[127]
• rights for carers at the service delivery level, including ‘requirements to identify, include, assess and support carers in the delivery of care and support services for carers and the people they care for’[128]
• the right for children and young people who are carers to participate fully in education and be supported to do this[129]
• the right to engage in education, employment and social and cultural life should be taken into account in any assessment of their needs.[130]
  66. The Committee heard there may be legal issues associated with including human rights in federal legislation. For example, Carers Australia said:

… in the absence of a Human Rights Act which could confer specific rights on carers, the Commonwealth Government must rely on its ‘external affairs power’ provided in s51 (xxix) of the Constitution and the ratification of international treaties to insert human rights into its legislation.[131]

2.67Carers Australia suggested that, to amend the Statement to make it rights-based, any individual statement that includes the words ‘have the right’ would need to correspond to an international instrument.[132] In the statements where there is no corresponding instrument, then the word ‘should’ is used.[133]

2.68The McCabe Centre for Law and Cancer and Carers Australia both identified that rights for carers can be found in various international human rights instruments, including the International Covenant on Economic, Social and Cultural Rights, which includes rights ‘relating to health, social security, job security, workplace protections and non-discrimination’[134]; the Convention on the Rights of People with Disability; and the Convention on the Rights of the Child.[135]

2.69The McCabe Centre for Law and Cancer added that there ‘are a number of different human rights instruments as well as guidance documents from the International Labor Organisation which would be relevant’.[136] For example, a number of International Labour Organisation Standards and Protocols recognise the rights of people in employment to care for people important to them.[137]

2.70Likewise, the AHRC observed that ‘although Australia is a party to human rights architecture, these rights may be limited to be respected in principle rather than in Australian law.’[138] Instead, it recommended that to ensure rights are fully realised, the Act should ‘strengthen understanding of the full spectrum of care, its importance to the functioning of society, and to promote equitable access to care and support services, facilities, and goods that are culturally safe and appropriate’.[139] The AHRC emphasised that:

Without the provision of adequate care and support services and goods, these rights are unable to be realised for population groups facing barriers through disability, age, language or other circumstances.[140]

2.71DSS suggested that a way to strengthen the Act would be to cross-reference to rights that already exist in other legislation, such as the Work Act 2009, Sex Discrimination Act 1984 and Disability Discrimination Act 1992, as opposed to creating ‘a separate act with its own unique set of rights’.[141]

International recognition of care

2.72The UK has well-developed laws establishing entitlements and rights for carers. Some European countries, Canada and the United States (US) have also implemented legislation for carers.

2.73New Zealand does not have legislation recognising carers; rather it has a Carers’Strategy (2008) and a Carers’ Strategy Action Plan 2019-2023.[142]

United Kingdom

2.74The UK has four acts that establish entitlements and rights for carers. The Carers (Recognition and Services) Act 1995 (UK) gives carers the right to request that their capacity to provide care be assessed for eligibility for community care services.[143]

2.75The Carers (Equal Opportunity) Act 2004 (UK) places a duty on local authorities to inform carers of their right to a Carer Assessment for support including in employment, training, and leisure, as part of the needs assessment process. It also grants local authorities more power to collaborate with departments such as housing, health and education to provide comprehensive support to carers.[144]

2.76The Care Act 2014 (UK) combined various existing legislation to put ‘carers on an equal footing with the people they care for’[145], by mandating responsible local authorities to conduct separate assessments for both adults in need of care and their carers.[146] The Care Act 2014 (UK) also introduced:

• a focus on promoting wellbeing[147]
• the right to a carer assessment which ‘considers the sustainability of the caring role and the carer’s future needs for support as well as their ability and willingness to provide care now and in the future’[148]
• a duty on local authorities to provide information and advice to carers in relation to their caregiving responsibilities and their own needs.[149]
  77. Most recently, the Health and Care Act 2022 (UK) requires health care settings to identify carers to support admission and discharge.[150]
  78. Mental Health Carers Australia proposed that Australia should adopt a model similar to the UK and mandate a carer’s assessment in all government-funded programs, enforce carers’ rights to access information and ensure the ‘involvement of carers in decision making in public policy and in the governance of associated providers’.[151] Similarly, the McCabe Centre for Law and Cancer said that establishing a right to a needs assessment ‘is likely to improve the reach of Australia’s current Carer Gateway model.’[152]
  79. Little Dreamers reported there have been challenges in effectively implementing and maintaining the UK’s Carer Act and that funding issues were a significant obstacle.[153]

Europe

2.80Portugal, Italy and Belgium have carer laws that establish certain rights for carers. Carers Australia said that Portugal introduced a Statute for Informal Carers which ‘includes an equivalent of a Statement for Australia’s Carers, outlining a series of rights relating to the “possibility” of carers to receive supports and “benefit” from actions.’[154]

2.81Carers in Italy have access to a support network of social workers, nurses, general practitioners, and voluntary organisations. The support is designed to encompass not only services and care allowances but also psychological and ‘relational’ assistance, including self-help. The provisions also promote early retirement for carers, particularly those facing challenges in balancing work and caregiving responsibilities.[155]

2.82Carers in Belgium have access to paid carers’ leave and flexible work arrangements, subject to satisfying criteria regarding the relationship between the carer and care recipient.[156]

North America

2.83The Canadian Human Rights Act establishes a right for people who need to provide care to family members to participate fully in the labour force and provides protections for carers’ leave and flexible work.[157]

2.84In the US, hospitals are required to identify and provide information to carers under the Caregiver Advise, Record, Enable (CARE) Act, which has been implemented in 44 states.[158] A separate act, the RAISE Family Caregivers Act,sets out the requirements for a national family caregiving strategy,[159] that is supported by a family carers’ advisory council.[160]

Obligations on the public service and associated providers

2.85Part 3 of the Act details the responsibilities and obligations of all Australian public service agencies, public service care agencies and associated providers. The Act is supplemented by a set of guidelines developed by DSS in 2016 to assist agencies in implementing their obligations and reporting where applicable.[161]

Public service agencies and public service care agencies

2.86Obligations on all public service agencies (including a department, an executive agency or a statutory agency within the meaning of ‘Agency’ in the Public Service Act 1999)[162] are limited to awareness and understanding of the Act, and that human resources policies are developed having regard to the Statement. There are no reporting requirements for these obligations.[163]

2.87Public service agencies that identify as ‘care agencies’ do have reporting obligations. Currently, it is up to each public service agency to self-assess whether they are a public service care agency, namely, ‘a public service agency that is responsible for the development, implementation, provision or evaluation of care supports’.[164] The Act defines ‘care supports’ as ‘policies, programs or services directed to carers or the persons for whom they care.’[165]

2.88Carers Australia found that there were ‘several … agencies that should be considered public service care agencies’ but that did not report under the Act, highlighting an ‘ambiguity in which agencies are self-identifying and why some are not.’[166]

2.89Carers Australia identified other agencies that reported but that provided limited level of detail.[167] It found that the agencies that provided comprehensive statements of compliance in 2021/2022 Annual Reports were DSS, Department of Veterans’ Affairs (DVA), and the National Disability Insurance Agency (NDIA).[168]

2.90When asked about which agencies self-identify as a care agency, DSS provided the Committee with six examples of Commonwealth agencies that reported in 2021–22: DSS, DVA, NDIA, the NDIS Quality and Safeguards Commission (NDISQSC), the Department of Health, and Services Australia.[169] Of these agencies, only the reports from DSS, DVA and NDIA include information on what actions the agencies are taking to reflect the principles of the Statement in developing, implementing, providing or evaluating care supports, or consulting carers, or bodies that represent carers, when developing or evaluating care supports.[170]

2.91By contrast, the reports from NDISQSC, Department of Health and Services Australia focus only on those agencies’ regard for carers in their human resources policy development, including the provision of carers’ leave.[171] There are a further six 2021‑22 annual reports that were tabled in the House of Representatives that provide reports of this type.[172]

2.92There was general agreement that this voluntary and inconsistent reporting system, with limited oversight, accountability or consequences[173], has resulted in an Act that is not effective and has not established significant or ongoing practical opportunities for carers.[174]

2.93MND Australia said that while the NDIA claims compliancy with the Act, its members report that ‘carers are not considered “important” when developing participant plans for people with MND [motor neurone disease] — and this is an experience that is nationwide.’[175]

2.94Carers and support organisations recommended that the obligations and reporting requirements under sections 7 and 8 should be extended to all public service agencies and omit the concept of public service care agencies from the Act altogether.[176]

2.95The Committee heard that obligations should not be limited to public service care agencies, as carers are present in all aspects of society[177] and can experience challenges across government including transport, employment, and education.[178]

2.96Carers NSW reported that carers are continually not being ‘included in care planning and decision making’[179], despite public service care agencies being obligated to include carers when developing or evaluating policies, programs or services directed to carers or the persons for whom they care.

Enforceability and complaints pathways

2.97Stakeholders argued that the Act’s biggest weakness is its explicit exclusion of any rights or duties that are legally enforceable (section10).[180] LEA commented:

Without a legally enforceable legislative approach, the nature of these Acts remains largely as rhetorical documents. Where stigma, discrimination and human rights abuses remain rife in Australian society, it is not enough to simply state ‘this is the way the Government would like you all to consider your fellow humans.’[181]

2.98Carers NSW emphasised that, without enforceability, ‘there is no formal way of holding a public service care agency to account if it develops or evaluates care supports without consulting with carers, or bodies that represent carers.’[182]

2.99Importantly, there are no appeals or complaints mechanisms if the principles in the Act are not followed.[183] According to QAMH and Arafmi, this is evident in carers’ service outcomes:

… there are many examples of instances where the principles in the Statement are clearly not being followed by public service agencies or associated providers. For example, carers may be routinely excluded from and marginalised in care settings, often with detrimental effects to the person being cared for as well as the efficiency and effectiveness of the service.[184]

2.100Similarly, Carers SA provided an example of a carer’s interaction with government services:

I recently spoke to a Carer who had cared for an adult child with severe mental illness and quadriplegia for a great many years. Along the way, the Carer naturally had been in contact with health services, mental health services, Centrelink, NDIS … support services provider and the GP … Unfortunately, not one of these had ever offered support for the Carer, nor advised the Carer that specific support services for Carers were available.[185]

2.101There was general agreement that to achieve true carer recognition, the Act should contain stronger enforcement and accountability measures, consequences for not delivering on obligations, and opportunities or pathways for carers to make a complaint or appeal a situation where they feel they have not been recognised or where human rights breaches have occurred.[186]

2.102The McCabe Centre for Law and Cancer added that for the Act to be rights-based, it needs to include:

… mechanism[s] for carers to participate in decision-making that affects their lives; more effective monitoring and obligations on Public Service agencies and others that are funded by the federal government; and clearly stating that carers have rights and providing a way to empower them.[187]

2.103DSS agreed that a rights-based approach would mean that the Act would need to contain a mechanism to monitor compliance, consequences for a failure to observe the right and a way to review decisions.[188]

2.104Carers in the ACT who believe they have not had their rights upheld can make a complaint through the ACT Human Rights Commission.[189] Complaints are then resolved through the ACT’s Human Rights Act 2004 as well as the Carer Recognition Act 2021 (ACT).[190]

2.105Carers recognition legislation in WA, Northern Territory and Queensland provide that consideration must be given to complaints made by carers in relation to services that impact them.[191]

Obligations on associated providers

2.106In addition to public service agencies, ‘associated providers’ are obligated by the Act to ensure that their officers, employees and agents have an awareness and understanding of, and take action to reflect the principles of the Statement when developing, implementing, providing or evaluating care supports.[192] Associated providers are defined as people or bodies, and their immediate subcontractors, that are contracted or funded by a public service care agency to develop, implement, provide or evaluate care supports.[193] Associated providers do not have reporting obligations.

2.107There was some confusion about which associated providers had obligations under the Act because, as Carers Australia noted, the onus is on the ‘public sector care agency to stipulate such reporting requirements in their funding agreements’.[194] Mental Health Carers Australia said that it is unclear if it extends to NDIS providers because ‘carers currently consider themselves “fortunate” if a provider engages them, not that it is and should be their right.’[195]

2.108As discussed earlier, First Nations carers experience a lack of understanding and responsiveness from mainstream service providers, with Gayaa Dhuwi (Proud Spirit) Australia explaining that this is ‘due to cultural differences and historical mistrust’.[196] It recommended that ‘all service providers should recognise, support, and offer FirstNations concepts of SEWB [social and emotional wellbeing], mental health, and healing.’[197]

2.109Carers ACT told the Committee that the Carer Recognition Act 2021 (ACT) requires services ‘that interact with the care relationship’ to have carer friendly policies and to operate carer friendly workplaces.[198] In addition, the ACT legislation ‘requires service providers who provide support to either side of the care relationship to ensure carers are provided with their rights on entry into the service and that those rights are upheld within the service’.[199] Carers ACT added that:

… that's given us the opportunity to effect some really pertinent changes for carers in the ACT, both at the high level in terms of policy at government but also in local changes in daily spaces. We've seen things, for example, like recognising carers is now an outcome in funding contracts that come through the territory. So, anyone who gets a contract to deliver a service as part of their performance indicators needs to be able to show how they've identified and responded to carers in that contract.[200]

Carers not recognised in health sector

2.110There was considerable concern about the lack of awareness and understanding of the Act in the health sector. Carers and carer support organisations reported that principle 7 of the Statement is not consistently upheld in medical settings. In practice, carers are not recognised, often treated as an afterthought and frequently overlooked. Carers are excluded from important decisions that affect both them and the person they are caring for.[201]

2.111Carers Queensland reported that carers are often sidelined by healthcare professionals, which can mean that important information about the patient is not being considered. Carers are then expected to take the patient home and provide care ‘with little to no new knowledge as to how best to provide care and support or any discussion as to their ongoing capacity to continue to provide care’.[208]

2.112HelpingMinds noted that even when carers identify themselves, they often go unrecognised in clinical service settings[209], and said:

Often, carers express frustration that the caring role can be overlooked by clinicians when the focus is on the patient. It is often in these circumstances that discharge of the patient to the carer is part of the treatment plan without acknowledging the impact that is going to have on the carer.[210]

2.113HelpingMinds suggested that the Act be amended to oblige clinicians, and in particular psychiatrists, to involve the carer ‘because they know their loved one, they know what they're like when they're not in front of a clinician.’[211]

2.114Concerns were raised that service providers may not be asking the right questions to determine whether a patient has a carer. LEA suggested that patients should be asked questions such as ‘do you have someone who supports you emotionally, someone that you trust and who looks out for you?’[212]

2.115There was strong support for the Act to be amended to require service providers to recognise carers and to promote and protect their rights.[213] The Older Person’s Advocacy Network (OPAN) called for carers to have access to remedies if their rights are not respected.[214]

2.116Alongside proposed amendments to the Act, there was emphasis on the importance of educating healthcare and other service providers to enhance awareness of carers.[215]

Carer advisory council

2.117Some Australian states have advisory councils established under their respective carer recognition legislation, or in Tasmania’s case, established by the relevant Minister, tasked with advancing the interests of carers. Table 2.1 outlines the membership and functions of each carer advisory council.

2.118The McCabe Centre for Law and Cancer, among others, proposed the establishment of a similar federal advisory body to monitor compliance with the Act.[220] Carers NSW said that this would ensure that carers are consulted in the ‘development of legislation, policies and programs that affect them’.[221]

2.119Kiind provided positive feedback on WA’s advisory council, stating that the ‘direct reporting and advisory capacity to the minister’ has worked well and as the council works across multiple sectors, there has been an increased recognition of carers.[222]

Review date and regular monitoring

2.120Most state and territory carer recognition legislation contain a clause that requires the relevant Minister, five years after the Act’s commencement, to review the operation and effectiveness of the Act and present a report to the relevant parliament.[223] The Carer Recognition Act 2023 (Tas) goes further and specifies that a review should also be conducted every subsequent five years.[224]

2.121The Committee heard that the Act should be regularly monitored and evaluated for its effectiveness to ensure it remains fit-for-purpose.[225]

2.122Carers WA said that the review date should also apply to the National Carer Strategy.[226]

Committee comment

2.123The Carer Recognition Act (the Act) has failed to provide the meaningful recognition and support that carers want and rightfully deserve. The Act contains weak and vague statements that lack clear calls to action and has a voluntary and inconsistent reporting system with no effective oversight and accountability.

2.124The consequences of an ineffectual Act are that carers are ignored or unsupported by public service agencies and in healthcare settings and excluded from important decisions concerning the individuals they care for. Some LGBTIQA+ carers face stigma and discrimination, further compounding the challenges that they encounter. Young carers are often not acknowledged at school and face barriers in accessing youth-friendly support and services. First Nations and CALD carers experience a lack of understanding and responsiveness from services, as well as discrimination and difficulty accessing help when they need it.

2.125While the current definition of carer in the Act may be serviceable, it is not perfect and a modern and more inclusive definition of carer could clarify the intent and scope of the Act. Carers are so much more than how the Act defines them. The term ‘carer’ may not translate to all CALD communities. The existing definition fails to acknowledge that an individual might receive care and support from multiple carers. The use of ‘frail and aged’ does not consider that some people can be frail and not aged. The definition also contributes to low rates of self-identification among young carers.

2.126The definition needs to encompass the diverse realities of the caring role. In this regard, the meaning should be reframed into a ‘care relationship’, modelled on the ACT’s Carer Recognition Act 2021 and Victoria’s Carers Recognition Act 2012.

2.127A ‘care relationship’ can be more flexible and inclusive of the diversity of carers, regardless of the nature of the relationship. It should explicitly acknowledge and encompass carers who support those with alcohol or other drug dependence, and young carers who care for a family member.

2.128Any modernised definition of carer should also recognise relationships where multiple family members are carers. For example, where a parent or child requires constant care, there is often a network of family members who provide that, and they should also be considered carers.

2.129Informal kinship carers and foster carers should not be explicitly defined as carers in the Act as their roles may not necessarily go beyond what would typically be expected from a familial relationship. Informal kinship carers and foster carers should be considered carers under the Act if they meet the definition of a ‘care relationship’ —that is, that the person or people they care for have a disability, are frail and/or aged, or are experiencing mental ill health, a medical condition or alcohol or other drug dependence.

2.130An amended Act should be established with urgency. The Committee considers that thirteen years is long enough for Australia’s carers to experience low recognition and its consequences on their interactions with government and the health sector.

2.131The Committee recommends that the meaning of carer under section 5 of the Carer Recognition Act 2010 (the Act) be modernised and contextualised as a ‘care relationship’ to be more inclusive of the diversity of caring roles and to make it easier for carers to self-identify.

2.132The Committee considers that a person is in a ‘care relationship’ with another person if the first person (the carer) provides care for one or more of the following reasons:

• the other person has a disability
• the other person is experiencing mental ill health
• the other person has a medical condition, including a terminal or chronic illness
• the other person is frail and/or aged
• the other person is experiencing alcohol or other drug dependence.
  133. The Committee considers the Act should specify that:
• a person can be in multiple care relationships
• children and young people under the age of 25 who provide care are young carers.
  134. All states and territories have carer recognition legislation but there are significant disparities in how the term ‘carer’ is defined. Carers who access healthcare services in a different state, or who move, may be unsure of their status as carers and what supports and services are available to them. To ensure national consistency, the Australian Government should work with the state and territories to develop a uniform and modern definition of carer across all carer recognition legislation. The Committee strongly encourages the Australian Government to consistently apply the modern definition of carer across other federal legislation relating to carers, and in data collection and reporting about the value of unpaid care.

2.135The Committee recommends that the Australian Government works with the state and territories to harmonise the definition of carer across all carer recognition legislation, acknowledging respective Australian Government and state and territory care arrangements, and in data collection and reporting about the value of unpaid care.

2.136The Committee recommends that the Australian Government conduct a review of all federal laws relating to carers, and make amendments where needed, to ensure consistency with the revised Act. The review should be conducted within one year of the revised Act being established.

2.137Carers should be able to have a clear understanding of their rights and have them realised. Carers want confidence that Australia’s lawmakers, policymakers and service providers place carers at the forefront when shaping health and social care laws and policy, rather than as an afterthought.

2.138The Statement for Australia’s Carers are ideals that remain far from being realised and one of the reasons for this is because the Act confers no rights on carers in the way that all Australians receive rights through anti-discrimination and employment legislation. While the Committee believes it is critical that a set of rights be established for carers, recognition legislation may not be the best way to do this.

2.139Evidence suggests there may be legal issues associated with introducing new rights in federal legislation that do not correspond to an international treaty. The Australian Government should seek legal advice to determine how best to establish rights for carers.

2.140The Committee recommends that, by December 2024, the Australian Government seek legal advice to determine how best to establish rights for carers. These rights should include:

• being acknowledged as partners in care
• being involved in planning and policy development
• being provided with information regarding the person they care for in order to provide care
• accessing flexible work arrangements.
  141. Several elements of the existing Statement should be retained, including that:

• Carers should be treated with dignity and respect;
• Support for carers should be timely, responsive, appropriate and accessible; and
• Carers should be supported to enjoy optimal health and social wellbeing and to participate, in family, social community and economic life.
  142. The Committee considers that the Statement must be strengthened to better recognise and acknowledge the diverse cohorts of carers and the gendered nature of the caring role. Again, the ACT’s Carer Recognition Act 2021 ‘Care relationship principles’provides a good model for how best to present the principles in the Statement to ensure that all carers are seen and heard.

2.143The Committee recommends that the Statement for Australia’s Carers is amended to include explicit recognition of:

• First Nations carers
• culturally and linguistically diverse carers
• lesbian, gay, bisexual, transgender, intersex, queer/questioning, asexual and other sexually or gender diverse (LGBTIQA+) carers
• young carers.
  144. The current approach of allowing public service agencies to self-assess if they are a ‘care agency’ is not working, and ultimately results in poor outcomes for carers, on both an individual level and in terms of policy development. Carers are present in almost all aspects of society, including but not limited to health, transport, employment, education, child protection and the family courts. All public service agencies must consider the needs of carers and become well-informed about their role in society, regardless of whether those agencies have carer-related policies, programs, or services in place.
  145. The failure of associated providers to recognise or identify carers as partners in care is concerning. Carers should be involved in treatment discussions as they are the ones that are expected to take the individual home and provide care. Carers should be asked whether they have the capacity and ability to do so. There should be clarity and transparency about which associated providers have obligations under the Act.
  146. The Department of Social Services, in collaboration with the Australian Public Service Commission, should be supporting all public service agencies to report on these obligations. The 2016 Carer Recognition Act 2010 Guidelines must be updated and include additional information on how agencies and associated providers can meet their obligations and reflect the principles in the Statement.

2.147The Committee recommends that the definition of ‘public service care agency’ under section 4 of the Act, and any further reference to ‘public service care agency’ is omitted.

2.148The Committee recommends that Part 3 of the Act be amended to require all public service agencies and associated providers to:

• take all practicable measures to ensure that it and its employees and agents have an awareness of, and take action to, reflect the principles of the Statement for Australia’s Carers in developing, implementing, providing or evaluating care supports
• develop internal human resources policies, so far as they may significantly affect an employee’s caring role, having due regard to the Statement for Australia’s Carers
• consult carers, or bodies that represent carers, when developing or evaluating care supports.
  149. In addition, all public service agencies should be required to, in each reporting period, prepare a report that is to be included in the agency’s annual report, on:
• the agency’s compliance with its obligations under the Act
• its associated providers’ compliance with their obligations under the Act.
  150. A modernised Act with stronger obligations must be supported by regular monitoring to ensure that it continues to remain fit-for-purpose. Like other state and territory carer recognition legislation, the Act should contain a provision requiring the relevant Minister to review the operation and effectiveness of the Act, the Statement, and the National Carer Strategy, every five years. A report on the Minister’s review should be tabled in Parliament.

2.151The Committee recommends that the Act be amended to include a provision that requires the Minister, every five years, to review the operation and effectiveness of the Act, the Statement for Australia’s Carers, and the National Carer Strategy. A report on the Minister’s review must be tabled in Parliament.

2.152It is important that carers are aware of how to voice their concerns or appeal situations where they believe they have not been recognised or where government agencies have not met their obligations under the Act. These issues are considered further in the following chapter.

Footnotes

[1]Carers Australia, Submission 111.1, page 5; Older Person’s Advocacy Network (OPAN), Submission 39, page 7; Dementia Australia, Submission 35, pages 4-5; Carers NSW, Submission 94, page 7; HelpingMinds, Submission 55, page 7; Name Withheld, Submission 18, page 3.

[2]Women, Work and Policy Research Group, and ARC Centre of Excellence in Population Ageing Research, USYD, Submission 81, page 2; Alex, Committee Hansard, 24 August 2023, page 11; Lived Experience Australia Ltd (LEA), Submission 56, page 7; Name Withheld, Submission 74, page 3; Name Withheld, Submission6, page 3; Kathleen Moore, Submission 112, page 2; Carers WA, Submission 113, page 6; Carers Tasmania, Submission 57, page 5; Name Withheld, Submission 27, page 2; Carers Queensland, Submission 59, page4.

[3]Name Withheld, Submission 6, pages 3-4.

[4]Women, Work and Policy Research Group, and ARC Centre of Excellence in Population Ageing Research, USYD, Submission 81, page 2; Carers Victoria, Submission 109, page 5; HelpingMinds, Submission 55, page 2; Ethnic Communities’ Council of Victoria, Submission 99, page 5.

[5]HelpingMinds, Submission 55, page 3.

[6]Carers Australia, Submission 111.1, page 5; Merri Health, Submission 103, page [3]Dementia Australia, Submission 35, page 5; Suicide Prevention Australia, Submission 22, page 4; HelpingMinds, Submission 55, page 3; Kiind, Submission 51, page 2;

[7]Ms Robyn Shannon, Deputy Secretary, Disability and Carers, Department of Social Services, Committee Hansard, 24 October 2023, page 4.

[8]Kiind, Submission 51, page 2.

[9]Carers ACT, Submission 58, page 3; Carers Tasmania, Submission 57, page 7.

[10]Carers Recognition Act 2021 (ACT), s 6; Carers Recognition Act 2012 (Vic), s 4; Carer Recognition Act 2023 (Tas), s 4.

[11]Carers Australia, Submission 111, page 19.

[12]Carers ACT, Submission 58, page 3; Research Centre for Palliative Care, Death and Dying, Submission 16, page 4; Carers Australia, Submission 111, pages 25, 29-31.

[13]Qld Alliance for Mental Health (QAMH) and Arafmi, Submission 41, page 4; MS Australia, Submission 91, page 4.

[14]Carers Victoria, Submission 109, page 7; Ms Lisa Kelly, Chief Executive Officer, Carers ACT, Committee Hansard, 29 August 2023, page 24; Ms Tarishi Desai, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, Committee Hansard, 4 October 2023, pages 16-17; Carers WA, Submission 113.1, page 1.

[15]Ms Judith Abbott, Chief Executive Officer, Carers Victoria, Committee Hansard, 4 October 2023, page 23.

[16]Carers WA, Submission 113.1, pages 1-2.

[17]Carers NSW, Submission 94.1, page 2.

[18]Kiind, Submission 51, page 7; Name Withheld, Submission 27, page 8; Research Centre for Palliative Care, Death and Dying - Flinders University, Submission 16, page 4.

[19]Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 3; Australian Human Rights Commission, Submission 32, page [5]; Carers NSW, Submission 94, page 5.

[20]Merri Health, Submission 103, page 2; MS Australia, Submission 91, page 3; QAMH and Arafmi, Submission41, page4.

[21]Merri Health, Submission 103, page 2.

[22]Merri Health, Submission 103, page 2; Women, Work and Policy Research Group and ARC Centre of Excellence in Population Ageing Research, USYD, Submission 81, page 6.

[23]Merri Health, Submission 103, page 2.

[24]Carers Tasmania, Submission 57, page 7.

[25]QAMH and Arafmi, Submission 41, page 6.

[26]Carers NSW, Submission 94, page 5; Carers WA, Submission 113, page 4.

[27]Carers WA, Submission 113, page 4; Mrs Jane Bacot-Kilpatrick, Chief Executive Officer, Carers Australia, Committee Hansard, 17 October 2023, page 6.

[28]Ms Robyn Shannon, Deputy Secretary, Disability and Carers, Department of Social Services, CommitteeHansard, 24 October 2023, page 6.

[29]National Disability Services, Submission 79, page 4; Carers Australia, Submission 111, page 30.

[30]Hudson Langan-Stark, Young Carer Participant, Little Dreamers Australia, Committee Hansard, 4October2023, page 2.

[31]Name Withheld, Submission 66, page 2.

[32]Ms Mary Pilkinton, Submission 87, pages 1, 3.

[33]Mr Kyle Hayes, Submission 100, page 2.

[34]Suicide Prevention Australia, Submission 22, pages 6-7.

[35]Little Dreamers Australia, Submission 54, page 1.

[36]Australian Research Alliance for Children and Youth, Submission 129, page 2.

[37]ARACY, Submission 129, page 2; The Centre for Excellence in Child and Family Welfare, Submission 121, page 2.

[38]Little Dreamers Australia, Submission 54, page 4.

[39]Little Dreamers Australia, Submission 54, page 15.

[40]Ms Ludmila Fleitas Alfonzo and Associate Professor Tania King, Submission 83, page 2; Women, Work and Policy Research Group and ARC Centre of Excellence in Population Ageing Research, USYD, Submission81, page 4.

[41]Little Dreamers Australia, Submission 54, page 5.

[42]Ms Madeleine Buchner, Founder and Chief Executive Officer, Little Dreamers Australia, Committee Hansard, 4 October 2023, page 6.

[43]ARACY, Submission 129, page 3; Little Dreamers Australia, Submission 54, page 11.

[44]Mental Health Carers Australia, Submission 116, page 8; Name Withheld, Submission 66, page 4; Ms Ludmila Fleitas Alfonzo and Associate Professor Tania King, Submission 83, page 2; ARACY, Submission 129, page 4; Name Withheld, Submission 118, page 2; Merri Health, Submission 103, page 4; Mental Health Carers Australia, Submission 116, page 4; Carers Tasmania, Submission 57, pages 7-8.

[45]Little Dreamers Australia, Submission 54, page 5.

[46]Ms Jacqueline de Mamiel, Young Carer Participant, Little Dreamers Australia, Committee Hansard, 4October 2023, page 4.

[47]Little Dreamers Australia, Submission 54, page 8.

[48]Little Dreamers Australia, Submission 54, page 8.

[49]Little Dreamers Australia, Submission 54, page 18.

[50]Little Dreamers Australia, Submission 54, page 6.

[51]Little Dreamers Australia, Submission 54, page 6.

[52]ARACY, Submission 129, page 2.

[53]Ms Dee-ann Riley, Submission 62, pages 1-2; ARACY, Submission 129, page 2.

[54]ARACY, Submission 129, page 2.

[55]Suicide Prevention Australia, Submission 22, page 7.

[56]Kiind, Submission 51, page 6; Redkite, Submission 53, page 6.

[57]Childhood Dementia Initiative, Submission 133, page 10.

[58]Kiind, Submission 51, page 6.

[59]Redkite, Submission 53, page 6.

[60]National Aboriginal Torres Strait Islander Women's Alliance (NATSIWA), Submission 127, page 9.

[61]Victorian Aboriginal Child Care Agency, Submission 73, page 2; Australian Human Rights Commission (AHRC), Submission 32, page [5]; Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 3.

[62]Department of Health and Aged Care, Submission 140, page 15.

[63]AHRC, Submission 32, page [5].

[64]Department of Social Services, Submission 70, page 6; AHRC, Submission 32, page [5]; Victorian Aboriginal Child Care Agency, Submission 73, page 3.

[65]Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 3; AHRC, Submission 32, pages [5]-[6].

[66]Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 3.

[67]Department of Health and Aged Care, Submission 140, page 15; NATSIWA, Submission 127, page 8.

[68]NATSIWA, Submission 127, page 2.

[69]AHRC, Submission 32, page [5].

[70]NATSIWA, Submission 127, page 7.

[71]AHRC, Submission 32, page 3; NATSIWA, Submission 127, page 10; Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 5.

[72]AHRC, Submission 32, pages 3-4.

[73]Ethnic Communities' Council of Victoria (ECCV), Submission 99, pages 3, 5; Department of Health and Aged Care, Submission 140, page 14; Carers Victoria, Submission 109, page 10.

[74]ECCV, Submission 99, page 3.

[75]Department of Health and Aged Care, Submission 140, page 14.

[76]ECCV, Submission 99, pages 3, 8; Department of Health and Aged Care, Submission 140, page 14.

[77]ECCV, Submission 99, page 8.

[78]GenWest, Submission 65, page 10.

[79]Department of Health and Aged Care, Submission 140, page 14.

[80]GenWest, Submission 65, page 11.

[81]GenWest, Submission 65, page 11; ECCV, Submission 99, page 6; Department of Health and Aged Care, Submission 140, page 14.

[82]GenWest, Submission 65, page 11.

[83]Department of Health and Aged Care, Submission 140, page 15.

[84]McCabe Centre for Law and Cancer, Submission 80, page 5; The University of Melbourne Graduate Student Association, Submission 34, page 6.

[85]McCabe Centre for Law and Cancer, Submission 80, page 5.

[86]ECCV, Submission 99, page 6.

[87]ECCV, Submission 99, page 6.

[88]Queensland Nurses and Midwives' Union, Submission 72, page 7; Department of Health and Aged Care, Submission 140, page 14.

[89]Carers Victoria, ‘LGBTI Carer Facts’, January 2017, www.carersvictoria.org.au/media/1107/lgbti-carer-facts-infographic.pdf.

[90]Department of Health and Aged Care, Submission 140, page 13.

[91]GenWest, Submission 65, page 9; Carers Australia, Submission 111, page 8.

[92]Carers Australia and the University of Canberra, Caring for Others and Yourself: 2022 Carer Wellbeing Survey, October 2022, page 8.

[93]GenWest, Submission 65, page 10; Department of Health and Aged Care, Submission 140, pages 13-14.

[94]GenWest, Submission 65, page 10; Carers Australia, Submission 111, page 8; Department of Health and Aged Care, Submission 140, page 13.

[95]Queensland Nurses and Midwives’ Union, Submission 72, page 7.

[96]Family Drug Support, Submission 82, page 2; Carers WA, Submission 113, page 4; ARACY, Submission 129, page 4; Carers NSW, Submission 94, page 5; Department of Premier and Cabinet, Tasmania, Submission 5, page 1; Carers Tasmania, Submission 57, pages 6-7.

[97]Family Drug Support, Submission 82, page 2; Carers Australia, Submission 111.1, page 6.

[98]Carers Australia, Submission 111.1, page 6.

[99]Family Drug Support, Submission 82, page 2.

[100]Carers Australia, Submission 111.1, page 6.

[101]Carers Tasmania, Submission 57, pages 6-7.

[102]GenWest, Submission 65, page 5; Ms Rosie Goethel, Committee Hansard, 5 September 2023, page 6.

[103]Carers NSW, Submission 94.1, page 2; Ms Sue Elderton, Senior Policy Officer, Carers Australia, Committee Hansard, 17 October 2023, page 8.

[104]Ms Sue Elderton, Senior Policy Officer, Carers Australia, Committee Hansard, 17 October 2023, page 8.

[105]Dr Meredith Kiraly, Submission 122, page 1.

[106]The Centre for Excellence in Child and Family Welfare, Submission 121, page 3; Connecting Foster and Kinship Carers – SA, Submission 93, page 3.

[107]Kin Raising Kids Tasmania Inc., Submission 20, page 2; Carers Tasmania, Submission 57, page 7.

[108]The Centre for Excellence in Child and Family Welfare, Submission 121, page 3.

[109]Dr Meredith Kiraly, Submission 122, page 1.

[110]Carers Tasmania, Submission 57, page 10; Kin Raising Kids Tasmania Inc., Submission 20, page 1; Dr Meredith Kiraly, Submission 122, page 5; Wellways Australia, Submission 117, page 8.

[111]Ms Sue Elderton, Senior Policy Officer, Carers Australia, Committee Hansard, 17 October 2023, page 8; Carers NSW, Submission 94, pages 4-5.

[112]Carers NSW, Submission 94, pages 4-5.

[113]Department of Social Services, Submission 70, page 4.

[114]Kiind, Submission 51, page 2; QAMH and Arafmi, Submission 41, page 4; Dementia Australia, Submission35, page [6]; ANU Humanities Research Centre, Submission 63, page 3.

[115]Lived Experience Australia Ltd, Submission 56, page 5.

[116]ermha365, Submission 71, page 3; Dementia Australia, Submission 35, page [6]; QAMH and Arafmi, Submission 41, page 5; Wellways Australia, Submission 117, page 6; Mental Health Carers Australia, Submission 116, page 5; Dementia Australia, Submission 35, page [6]; Australian Healthcare and Hospitals Association, Submission 8.1, page 2.

[117]Dementia Australia, Submission 35, page [6].

[118]Carers Australia, Submission 111.1, page 6; OPAN, Submission 39, pages 2-3; McCabe Centre for Law and Cancer, Submission 80, pages 9-10; Carers Tasmania, Submission 57, page 57; AHRC, Submission 32, page 3; Carers Queensland, Submission 59, page 7; Carers SA, Submission 61, page 3; Inner South Family and Friends, Submission 107, page 8; Wellways Australia, Submission 117, page 6; Australian Healthcare and Hospitals Association, Submission 8.1, pages 2-3; Research Centre for Palliative Care, Death and Dying - Flinders University, Submission 16, page 7; Lived Experience Australia Ltd, Submission 56, page 3.

[119]McCabe Centre for Law and Cancer, Submission 80, page 9; Lived Experience Australia Ltd, Submission 56, page 3.

[120]Ms Tarishi Desai, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, Committee Hansard, 4 October 2023, page 16.

[121]Ms Tarishi Desai, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, Committee Hansard, 4 October 2023, page 16.

[122]Professor Sharon Lawn, Chair and Executive Director, Lived Experience Australia, Committee Hansard, 29 August 2023, page 1.

[123]Suicide Prevention Australia, Submission 22, page 5; GenWest, Submission 65, page 7.

[124]ARACY, Submission 129, page 4; Little Dreamers, Submission 54, page 4.

[125]Carers NSW, Submission 94, page 8; Carers Australia, Submission 111.1, page 8.

[126]MS Australia, Submission 91, page 4.

[127]OPAN, Submission 39, page 3.

[128]Carers NSW, Submission 94.1, page 2.

[129]Carers Australia, Submission 111.1, page 8.

[130]Carers Australia, Submission 111.1, page 8.

[131]Carers Australia, Submission 111.1, page 6.

[132]For example: United Nations, International Convention on Economic, Social and Cultural Rights, 1966.

[133]Carers Australia, Submission 111.1, page 7.

[134]Ms Tarishi Desai, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, Committee Hansard, 4 October 2023, page 17.

[135]Ms Tarishi Desai, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, Committee Hansard, 4 October 2023, page 17; Carers Australia, Submission 111.1, page 6.

[136]Ms Tarishi Desai, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, Committee Hansard, 4 October 2023, page 17.

[137]See for example International Labour Organisation, Convention on Workers with Family Responsibilities, C156, 1981.

[138]AHRC, Submission 32, page [4].

[139]AHRC, Submission 32, page [4].

[140]AHRC, Submission 32, pages [4]-[5].

[141]Ms Robyn Shannon, Deputy Secretary, Disability and Carers, Department of Social Services, Committee Hansard, 24 October 2023, page 4.

[142]Carers Australia, Submission 111, page 28.

[143]Women, Work and Policy Research Group and ARC Centre of Excellence in Population Ageing Research, USYD, Submission 81, page 2.

[144]Carers Australia, Submission 111, page 26; Mental Health Carers Australia, Submission 116, page 6.

[145]Carers Australia, Submission 111, page 26.

[146]McCabe Centre for Law and Cancer, Submission 80.1, page 5.

[147]Mental Health Carers Australia, Submission 116, page 6.

[148]McCabe Centre for Law and Cancer, Submission 80.1, page 5.

[149]Mental Health Carers Australia, Submission 116, page 6.

[150]Carers NSW, Submission 94.1, page 3.

[151]Mental Health Carers Australia, Submission 116, page 6.

[152]McCabe Centre for Law and Cancer, Submission 80.1, page 5.

[153]Ms Madeleine Buchner, Founder and Chief Executive Officer, Little Dreamers Australia, Committee Hansard, 4 October 2023, page 6.

[154]Carers Australia, Submission 111, page 27.

[155]Carers Australia, Submission 111, page 27.

[156]Carers Australia, Submission 111, pages 27-28.

[157]McCabe Centre for Law and Cancer, Submission 80.1, page 6. Australia ranks well behind Canada in the difference between the number of unpaid caring hours provided by women compared to men, see: KPMG, Towards a new and improved era in women’s equality: valuing unpaid work, November 2022, page10.

[158]Carers NSW, Submission 94.1, page 3.

[159]Administration for Community Living, United States Government, RAISE Family Caregiving Advisory Council, May 2023, www.acl.gov/programs/support-caregivers/raise-family-caregiving-advisory-council.

[160]Suicide Prevention Australia, Submission 22.1, page 2.

[161]Department of Social Services, Carer Recognition Act 2010 Guidelines: A guide for Australian Public Service Agencies for the implementation of the Carer Recognition Act 2010, April 2016.

[162]Carer Recognition Act 2010, s 4.

[163]Carer Recognition Act 2010, s 7.

[164]Carer Recognition Act 2010, s 4; Department of Social Services (DSS), Submission 70.1, page 1.

[165]Carer Recognition Act 2010, s 4.

[166]Carers Australia, Submission 111, page 23.

[167]Carers Australia, Submission 111, page

[168]Carers Australia, Submission 111, page

[169]DSS, Submission 70.1, page 1.

[170]DSS, Annual Report 2021-22, pages 255-256; Department of Veterans’ Affairs, Annual Report 2021-22, page 207; National Disability Insurance Agency, Annual Report 2021-22, pages 204-205.

[171]NDIS Quality and Safeguards Commission, Annual Report 2021-22, page 61; Department of Health, Annual Report 2021-22, page 132; Services Australia, Annual Report 2021-22, page 131.

[172]Australian Electoral Commission, Annual Report 2021-22, page 70; Attorney General’s Department, Annual Report 2021-22, page 49; National Indigenous Australians Agency, Annual Report 2021-22, page 89; National Mental Health Commission, Annual Report 2021-22, page 75; Treasury, Annual Report 2021-22, page 200.

[173]Carers NSW, Submission 94, page 6; Merri Health, Submission 103, page 3; Carers Australia, Submission111, page 23.

[174]Carers Victoria, Submission 109, page 5; Inner South Family and Friends, Submission 107, page 1.

[175]MND Australia, Submission 69, page 5.

[176]Carers NSW, Submission 94, page 7; Name Withheld, Submission 27, page 4; Redkite, Submission 53, page 10; QAMH and Arafmi, Submission 41, page 8; Suicide Prevention Australia, Submission 22, page 4; Relationships Australia, Submission 17, page 14.

[177]Redkite, Submission 53, page 10.

[178]Suicide Prevention Australia, Submission 22, page 4.

[179]Carers NSW, Submission 94, page 7.

[180]Carers NSW, Submission 94, page 7; Carer Recognition Act 2010, s 10(1).

[181]Lived Experience Australia Ltd, Submission 56, page 7.

[182]Carers NSW, Submission 94, page 8.

[183]QAMH and Arafmi, Submission 41, page 7; Carers NSW, Submission 94, page 8.

[184]QAMH and Arafmi, Submission 41, page 7.

[185]Carers SA, Submission 150, page 4.

[186]Carers NSW, Submission 94, page 8; QAMH and Arafmi, Submission 41, page 7; Carers ACT, Submission 58, page 10; Kiind, Submission 51, page 3; Carers SA, Submission 150, page 4; Professor Sharon Lawn, Chair and Executive Director, Lived Experience Australia, Committee Hansard, 29 August 2023, page 1.

[187]Ms Tarishi Desai, Manager, Treatment and Supportive Care, McCabe Centre for Law and Cancer, Committee Hansard, 4 October 2023, page 16.

[188]Ms Robyn Shannon, Deputy Secretary, Disability and Carers, Department of Social Services, Committee Hansard, 24 October 2023, page 4.

[189]Ms Lisa Kelly, Chief Executive Officer, Carers ACT, Committee Hansard, 29 August 2023, page 24.

[190]Ms Lisa Kelly, Chief Executive Officer, Carers ACT, Committee Hansard, 29 August 2023, page 24.

[191]Carers Recognition Act 2004 (WA), Schedule 1 – The Western Australian Carers Charter; Carers Recognition Act 2006 (NT), Schedule – Northern Territory Carers Charter; Carers (Recognition) Act 2008 (Qld), Schedule – The Queensland carers charter.

[192]Carer Recognition Act 2010, s 9.

[193]Carer Recognition Act 2010, s 4(2).

[194]Carers Australia, Submission 111, page 25.

[195]Mental Health Carers Australia, Submission 116, page 4.

[196]Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 3.

[197]Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 3.

[198]Ms Lisa Kelly, Chief Executive Officer, Carers ACT, Committee Hansard, 29 August 2023, page 23.

[199]Ms Lisa Kelly, Chief Executive Officer, Carers ACT, Committee Hansard, 29 August 2023, page 23.

[200]Ms Lisa Kelly, Chief Executive Officer, Carers ACT, Committee Hansard, 29 August 2023, page 23.

[201]Carers Australia, Submission 111.1, page 5; OPAN, Submission 39, page 7; Dementia Australia, Submission 35, pages 4-5; Carers NSW, Submission 94, page 7; HelpingMinds, Submission 55, page 7; Name Withheld, Submission 18, page 3; Carers Queensland, Submission 59, pages 5-6; Professor Sharon Lawn, Chair and Executive Director, Lived Experience Australia, Committee Hansard, 29 August 2023, page 2; OPAN, Submission 39, page 7.

[202]Dementia Australia, Submission 35, page 4.

[203]Ms Alyssa Weirman, Committee Hansard, 4 October 2023, pages 11-12.

[204]Name Withheld, Submission 18, page 3.

[205]Ms Madeleine Buchner, Founder and Chief Executive Officer, Little Dreamers Australia, Committee Hansard, 4 October 2023, page 6.

[206]Alex, Committee Hansard, 24 August 2023, page 11.

[207]Briana, Committee Hansard, 24 August 2023, page 11.

[208]Carers Queensland, Submission 59, pages 5-6.

[209]HelpingMinds, Submission 55, page 3.

[210]HelpingMinds, Submission 55, page 7.

[211]Mrs Paula Smith, Volunteer, Mood Disorders Carers Support Group, Committee Hansard, 24 August 2023, page 3.

[212]Professor Sharon Lawn, Chair and Executive Director, Lived Experience Australia, Committee Hansard, 29August 2023, page 3.

[213]OPAN, Submission 39, page 3; Carers SA, Submission 61, page 4; Women, Work and Policy Research Group and ARC Centre of Excellence in Population Ageing Research, USYD, Submission 81, page 2.

[214]OPAN, Submission 39, page 3.

[215]See Chapter 3.

[216]Carers Recognition Act 2004 (WA), Part 3.

[217]Carers (Recognition) Act 2008 (Qld), Part 3.

[218]Carers (Recognition) Act 2010 (NSW), Part 3.

[219]Tasmanian Government, Department of Premier and Cabinet, ‘Minister’s Carer Advisory Council Terms of Reference’, November 2022, page 1, www.dpac.tas.gov.au/__data/assets/pdf_file/0019/254305/Ministers-Carer-Advisory-Council-MCAC-Terms-of-Reference.pdf.

[220]McCabe Centre for Law and Cancer, Submission 80.1, page 5; Carers NSW, Submission 94, page 6; Suicide Prevention Australia, Submission 22, page 5; ermha365, Submission 71, page 7; Tandem, Submission 123, page 3; Carers WA, Submission 113.1, page 2.

[221]Carers NSW, Submission 94, page 6.

[222]Ms Carrie Clark, Chief Executive Officer, Parents of Children with Special Needs Inc, trading as Kiind, Committee Hansard, 29 August 2023, page 16.

[223]See, for example: Carers (Recognition) Act 2010 (NSW), s 15; Carers Recognition Act 2021 (ACT), s 15; Carers Recognition Act 2005 (SA), s 9; Carers Recognition Act 2006 (NT), s 9.

[224]Carer Recognition Act 2023 (Tas), s 10.

[225]Carers Tasmania, Submission 57, page 9; HelpingMinds, Submission 55, page 5.

[226]Carers WA, Submission 113, page 9.