3. A national carer strategy and practical recognition
   1. The Committee was concerned that the number of carers in Australia is not expected to keep pace with demand for informal care in the future.[1] This has implications for the sustainability of care provision,[2] and warrants careful consideration of the supports available to carers, and drivers and barriers to people becoming carers.[3]
   2. There are many factors that influence whether a person requires informal care, such as the availability and adequacy of paid care. As chapter one noted, significant policy work and community consultation has already occurred around improving support for people with disability and people who are frail due to age.
   3. The Committee examined developments in the policy landscape since the CarerRecognition Act 2010 (the Act) was established and considered what reforms are needed to better recognise and support carers. This chapter examines:

• the National Carer Strategy 2011 (the 2011 strategy)
• the adequacy of existing supports for carers provided through Carer Gateway
• developments towards a new National Carer Strategy (new strategy) and evidence about what its key features should be.

National Carer Strategy 2011

3.4The 2011 strategy gave effect to the principles of the Act and outlined how carers’ contributions can be valued, supported and shared across six priority areas for action.[4] Table 3.1 details the 2011 strategy’s priority areas, policy directions and performance measures. The data source for performance measures was to be the Australian Bureau of Statistics (ABS) Survey of Disability, Ageing and Carers (SDAC), which is conducted every three years.[5]

Source: Department of Families, Housing, Community Services and Indigenous Affairs, National Carer Strategy Implementation Plan, 2011, pages 29-30.

3.5The states and territories had input into the development of the 2011 strategy and were to work with the Australian Government on its implementation through the National Carer Strategy Working Group. The working group included Australian and state and territory government representatives with disability, mental health and carer expertise.[6]

3.6The implementation of the 2011 strategy was to be structured around the following three action plans:

• short term practical actions, 2011-2014
• longer term practical actions, 2014-2017
• emerging practical actions, 2017-2020.[7]
  7. The 2011 strategy was discontinued before the second and third actions plans were progressed. Carers Australia said that few of the actions and performance indicators identified by the 2011 Strategy were achieved, and there are neither any publicly available progress reports beyond 2011–12, nor evidence of planned evaluation activities having been undertaken.[8]
  8. Carers Australia noted that, after 2014, there was a shift in focus to consumer directed care and some carer support services were lost to Aged Care and the NDIS, such as funding for mental health respite and young carers.[9]
  9. The Department of Social Services (DSS) said the 2011 strategy was ‘superseded’ in 2015 by the Integrated Plan for Carer Support Services.[10] The Integrated Plan for Carer Support Services model, Carer Gateway, was implemented in April 2020.[11]

Carer Gateway

3.10The target cohort for Carer Gateway services is carers as defined in Section 5 of the Act. To be eligible for support, the carer’s role must be ongoing, or likely to be ongoing, for at least six months. This expectation of six months or more does not apply to a carer of a person who needs palliative care.[12]

3.11Carer Gateway services include:

• carer directed packages that provide a range of practical supports to assist carers in their role. The total value of the package, to which each carer is entitled, is $3,000 (over a 12-month period) and can be used for a range of items and services including:

• planned respite
• cleaning services
• assistance with shopping
• cooking
• assistance with transport.

• one-off practical support (up to an amount of $1,500) for items that support carers in their caring role or to access education or employment, such as training courses or a laptop[13]
• access to emergency respite
• in-person and online peer support groups
• in-person and phone counselling
• in-person and online self-guided coaching
• online skills courses.[14]
  12. The proportion of carers registered with Carer Gateway service providers increased from 2 per cent in 2021 to almost 5 per cent in 2022.[15] As of June 2023, 163,403carers were registered with Carer Gateway service providers.[16]
  13. The Carer Gateway national advertising campaign commenced in October 2022 and aims to increase awareness of services and supports and assist carers to self-identify. Since the campaign’s launch, the number of visitors to the Carer Gateway website increased from an average of 70,000 visitors each month (over the 12months prior), to an average of 310,000 visitors per month between October 2022 and June 2023.[17]
  14. The Australian Government has committed $1.108 billion over five years to 2026–27 to fund Carer Gateway service providers, the national phone counselling service and other programs, such as the Young Carer Bursary Program. Estimated annual Australian Government funding for carer support services is included in Table 3.2.

Source: DSS, Submission 70.2, page 6.

3.15The Australian Government also provides financial support to carers through the Carer Payment, Carer Allowance, Carer Supplement, Child Disability Assistance Payment, and Carer Adjustment Payment, at a cost of more than $60 billion over five years to 2026-2027.[18]

3.16Outcome reporting for Carer Gateway is included in the DSS annual report. The sole performance measure is the extent to which carers access information, supports and services. The 2021–22 annual report notes that, from 2022–23, DSS will also report on the extent to which carers’ (who are registered with Carer Gateway) wellbeing is assessed as improved.[19]

3.17Carer Gateway is currently being evaluated for its appropriateness, effectiveness and efficiency; the evaluation report is expected in late 2023.[20]

Feedback from carers

3.18There was mixed feedback on whether Carer Gateway was providing carers with access to the support services they need. Some carers indicated the supports they received were helpful.[21]However, the Committee also heard that that accessing support through Carer Gateway can be slow, time-consuming and difficult for carers.[22] Some carers did not receive the assistance they wanted and were offered services they felt were unhelpful[23], while others believed it was not worth the effort seeking support from Carer Gateway.[24] Forexample, one carer said:

While it was easy finding the Carers Gateway, finding the space and time to call was not. By the time I did, we had been in crisis for some time. It took about a week to have an intake assessment - this is too long when people are in crisis. But then the support that was offered took even longer and there have been multiple other challenges with receiving services.[25]

3.19Another carer described a series of poor experiences with Carer Gateway and said, ‘at times I have felt very judged and I have heard other similar stories. In the end it was easier to go without these services than deal with more stress.’[26]

3.20Tandem reported that most respondents to a survey it conducted expressed concerns about Carer Gateway, including ‘long waitlists for resources that are inadequate, that relevant practical assistance such as in-home help or respite were largely unavailable, and the service was difficult to access as carers’ calls were not returned.’[27]

3.21Carers described experiences suggesting low understanding among some CarerGateway service provider staff about program eligibility and guidelines, and a lack of consistency in the advice given to them.[28] For example, one carer was initially told she needed to be ‘physically incapacitated’ in order to access respite, but did receive help when she told Carer Gateway she had a prescription and letter from her doctor.[29]

3.22There may be a lack of awareness among Carer Gateway staff of the needs of young carers and their eligibility to access Carer Gateway supports. Ms Mary Pilkinton reported that she was initially denied access to the service, and it took at least four phone calls for an intake assessment to be offered and support provided.[30]

3.23MsPilkinton noted the Carer Gateway website provides no clear way for people to make a complaint to DSS about Carer Gateway services.[31] By contrast, DSS claimed that complaints mechanisms are clearly available on the CarerGateway website and that people could make a complaint with the service provider or directly with the department.[32] However, the Carer Gateway link that DSS provided to the Committee is about ‘Speaking up for someone’ – that is, advocating for the rights of the person being cared for. MsPilkinton observed:

…if you click this link, it doesn't actually have any information about making a complaint about the Carer Gateway. It is general advice about how to make a complaint on behalf of someone you care for, but it doesn't say anything about where to lodge a complaint about the Carer Gateway itself. I think this is a problem as a lot of Carer Gateway participants probably don't know that the Carer Gateway is delivered by different service providers that have their own complaints process so they are likely to look for this information on the national website. I also think a lot of people would feel uncomfortable calling the Carer Gateway and asking their carer support worker directly about complaints processes.[33]

Accessibility and integration with other support systems

3.24Concerns were raised about the accessibility of Carer Gateway. Currently, carers can call 1800 422 737 between the hours of 8.00 am and 5.00 pm, Monday to Friday. Carers requiring emergency respite can call outside of these hours, while carers requiring phone counselling can call between 8.00 am and 6.00 pm. Carers can also request a call back via a form on the Carer Gateway website.[34]

3.25The Committee heard that the option to call during regular business hours can be particularly limiting for young carers who juggle their caring role with education and after school activities. For example, MsJacqueline de Mamiel said:

When I first became engaged with Carer Gateway they needed to do a really long phone consult with me with this star system to find out what I wanted and what sort of support I needed. It was about an hour-and-a-half phone call and there needed to be a phone call in advance to set up the phone call…I often get calls from support services during the day and then, when I call back after school, I'm told, 'That person has gone home now,' or 'They're not working at the moment and they can call you back tomorrow morning.' I am like: 'I am at school again tomorrow morning. Five days a week, I'll be there.[35]

3.26The Chamber of Commerce and Industry of Western Australia said the Carer Gateway phone service should be extended to be a dedicated after-hours crisis hotline.[36]

3.27The Committee heard that services should be designed to be inclusive for carers with low digital literacy[37] and limited English language skills.[38] Carer Gateway provides a range of materials and resources in Auslan and up to 30languages for culturally and linguistically diverse (CALD) carers on the Carer Gateway website. The Carer Gateway advertising campaign included targeted social media, radio and out‑of‑home advertising and a range of in-language materials for First Nations and CALD audiences, such as carer case studies.[39]

3.28There is a need to ensure that carers can easily navigate support systems, and this requires careful consideration of the user experience.[40] Carers and those they care for may be eligible to access support from other systems such as My Aged Care and NDIS. Where these systems operate in silos, it can be confusing for carers. Improved systems integration and the provision of one-to-one support and advocacy was recommended to assist carers to navigate services.[41] For example, one carer said:

NDIS should be linked into Carer gateway, so participants do not have to explain their story again and again. Carer gateway is not that easy to navigate and you feel that you aren’t supported, in fact many carers do not even bother trying to access services through carer gateway because it’s all too difficult.[42]

3.29Other service systems should be providing referrals to Carer Gateway. One carer noted that she was not directed to any carer support while applying for carer payments through Centrelink.[43]

3.30Neighbourhood Houses Victoria identified areas of duplication between Carer Gateway, state-based and not-for-profit services and suggested that resources could be more efficiently and effectively deployed.[44]

Carer assessments and flexibility in service provision

3.31A key component of Carer Gateway is a carer assessment that is used to help understand carers’ needs and to plan supports. The Carers StarTM tool was developed in the United Kingdom and covers seven key areas including the carer’s health, their caring role, how they are managing at home, whether they have time for themselves, how they feel, their finances and work.[45]

3.32DSS said that not all carers need an assessment to access support. For example, the assessment could be skipped to receive counselling. However, carers require an assessment to access more substantive services, to ensure they meet eligibility criteria. DSS noted that the assessment also provides a pathway for prevention and support, rather than just crisis management.[46]

3.33Tandem reported that many responses to its survey of carers described:

… a confusing intake and assessment process, in which carers are asked ‘robotic questions’ to complete a Carer Star assessment tool that is ‘an inaccurate measure of the carer’s individual situation’, and in which carers struggle to find out what support is available. It was suggested that these difficulties can be exacerbated for carers in rural areas, and those who require interpreters. Many respondents reflected that Carer Gateway appears designed for carers who support people with physical disability or who are aged, rather than the challenges associated with the mental health carer role, and that there is a subsequent lack of understanding among staff.[47]

3.34Carers called for greater flexibility in the requirement for assessment, the support services they could access, and transparency and clarity in how much support they are eligible to receive. For carers who may only require a few hours of support, the prospect of having to undergo a lengthy assessment may deter them seeking help.[48] One carer described navigating a ‘labyrinth’ of phone calls to undergo an assessment and receive support and was concerned about having to go through the whole process again to access further support because it was unclear how much funding they were eligible for.[49] It was suggested that carers should be provided with their support budget so they can decide how best to spend it.[50]

3.35For some carers, help in the home with day-to-day tasks may be more useful than respite or self-care supports, such as social outings.[51] More practical and physical supports would allow carers to focus more on providing care.[52]

3.36Support Groups Queensland Inc. called for there to be more supports available to carers at transition points, such as when people become carers, when their caring role changes significantly and when their caring role ends, including support for grief and loss. It suggested this includes ‘information kits, faster intake across government systems and jointly managing the process for both the person and their carer.’[53]

Access to quality respite care options

3.37Respite care services look after people requiring care so that their carer can have a break. Respite can make a big difference to carers’ experience of caring and their ability to sustain their caring role.[54] Planned respite care can be arranged through Carer Gateway during business hours. Carers may be able to access emergency respite care through Carer Gateway outside of business hours if they are sick or injured. My Aged Care and the NDIS may also support respite care for the person needing care.[55]

3.38The Committee heard that, despite respite care being available through multiple support systems, carers still have difficulty accessing respite services when they need them.[56] Furthermore, there are significant differences in how much respite care is available to carers through My Aged Care and NDIS, and limitations on eligibility and barriers to access for mental health carers.[57]

3.39The Committee heard that when some carers have tried to access emergency respite care via Carer Gateway, they have been told to call back during business hours, to contact My Aged Care or to take the person they care for to their local hospital emergency department.[58] Some carers have even tried to get themselves admitted to hospital emergency departments to secure some form of respite.[59]

3.40Carers Australia reported that ‘respite care is even more difficult, if not impossible, to access in many regional, rural, and remote locations.’[60] For many, ‘being able to “access” respite means the person being cared for is separated by great distances from the carer and off Country, adding greater emotional, practical, and financial strain.’[61]

3.41The Committee heard that the need to access respite care is not limited to carers being physically incapable of continuing in their role, and that carers experiencing mental and emotional strain from caring should be eligible for support.[62]

3.42Some carers raised concerns about the quality of respite care services. For example, CarersACT reported:

… the quality of care from respite and support workers was raised in almost every consultation, with an alarmingly large number of examples where care recipients were injured or hospitalised because of the poor quality of support. This led to carers feeling that there was no alternative but to perpetually take on all responsibility of care. As a carer group attendee lamented, ‘How can I rest when I have no trust in the support worker?’ Inadequate training and lack of skilled support workers result in poor quality care, often jeopardizing the safety of care recipients.[63]

3.43There is a need for improved access to appropriate respite services for people who require complex care, such as children and young people with dementia.[64]

3.44There was strong support for easier access to timely, locally available, high-quality respite care services for carers[65], including culturally appropriate options for FirstNation carers and carers from CALD backgrounds.[66]

Access to counselling and mental health support

3.45Access to free or subsidised professional counselling and mental health support services for carers when they need it is important to safeguard carers’ wellbeing.[67] Carers frequently experience severe emotional distress and immediate access to counselling and other mental health supports should be prioritised.[68]

3.46Carers over the age of 18 years can access a total of six free phone counselling sessions through the Carer Gateway National Telephone Counselling Service from 8.00 am to 6.00 pm, Monday to Friday.[69] Carers under the age of 18 years can contact the Kids Helpline for support over the phone.[70]

3.47Carers of all ages are also eligible to access a total of six free in-person counselling sessions through Carer Gateway service providers. Counsellors must have previous experience in providing counselling to children and adolescents before providing individual counselling for carers aged under 18 years of age.[71]

3.48Counselling is particularly important for mental health carers. One carer explained:

As a carer you are a support person, a guiding hand, a safety net. It is not about you but the person you support and care for. I prioritised the acute needs of XX over my family when needed. I regularly prioritised their needs over my own. XX’s needs increased incrementally over time but we didn’t notice. Their behaviour changed, their needs increased day by day, one episode at a time. XX’s behaviour got steadily worse, but we did not see it as it we had normalised it. We were frogs in boiling water wondering how on earth we got to this point.

This is one of the benefits of counselling for mental health carers. Counsellors can hold up a mirror and invite you to look at the situation from a different perspective. The counsellor at Carers ACT was instrumental in helping us to understand the risk to our safety as things were unravelling. The counsellor talked us through this and supported us to understand the risks and introduced the notion of safety planning for us. Ironically, I was very accustomed with this term as I frequently did safety planning for XX.[72]

3.49However, the Committee received concerning evidence that some carers are not receiving the counselling support they need. For example, one carer reported that, when her son attempted suicide, ‘I found myself in serious need of immediate counselling, but instead was confronted with an agonising six-week waiting period through the Carer's Gateway. This left me feeling abandoned, isolated, and without the much-needed support.’[73] Another carer reported delays in access to counselling and then described being treated ‘very poorly’ by a phone counsellor which, they said, ‘exacerbated my existing distress.’[74]

3.50More broadly, there was support for greater investment in mental health preventative care to aid better health and wellbeing outcomes for carers.[75]

3.51Autism Awareness Australia called for targeted, professional mental health and counselling services for carers of people with autism who understand the unique challenges associated with that condition.[76]

Targeted support for CALD and First Nations carers

3.52As noted in the previous chapter, carers have diverse backgrounds, circumstances and needs, and this diversity needs to be reflected in the Act. A strengthened Act, which places obligations on Australian Government providers to support carers, will require renewed focus on reducing barriers that CALD and First Nations carers face in accessing support.

3.53CALD carers are underrepresented in Carer Gateway registrations. In June 2023, only six percent of carers registered with Carer Gateway identified as CALD,[77] whereas the percentage of carers identifying as being from a multicultural background in 2018 was 30 per cent.[78]

3.54Supporting carers from CALD backgrounds requires knowledge of how caring is understood in different communities and the additional barriers that CALD carers face in performing their roles and accessing support.[79] Consultations conducted by Ethnic Communities' Council of Victoria (ECCV) and Carers Victoria from 2021 to 2023 indicated that most carers from migrant and refugee backgrounds lacked any means of support and that low English language proficiency and digital literacy were key contributors to this.[80]

3.55There is a need to ensure that mainstream services are culturally safe spaces and to explore collaborative partnerships that improve referral pathways and programs for CALD carers. Close links between mainstream services and community organisations would be beneficial in encouraging carers to seek support and to help carers navigate the support system.[81]

3.56Similarly, First Nations carers require access to high quality, culturally appropriate and community-led support services.[82] The provision of carer support services to meet the needs of First Nations carers by the Aboriginal and Torres Strait Islander community-controlled sector would be consistent with priority reform two of Closingthe Gap, the United Nations Declaration on the Rights of Indigenous Peoples, and a reformed, human rights-based Act.[83]

3.57ECCV said that increased engagement with diverse communities and greater diversity amongst service users should be a Key Performance Indicator for funded carer agencies.[84]

Training

3.58Many carers take on complex caring roles with no training in providing health care.[85] Stakeholders argued that there is a need for more practical training for carers to help them provide better care and to ensure they minimise risks to themselves, for example when performing heavy manual lifts. There was support for:

• free manual handling, wound care and medication management training,[86] and training in suicide intervention[87]
• options for in-person and online training[88]
• carers to have access to training that is equivalent to the training that paid carers receive.[89]

Development of the new strategy

3.59The Australian Government announced in October 2023 that it will invest $3.8 million through to 2025–26 to develop the new strategy. More information on the development and consultation process will be announced by the end of the year and the new strategy is expected to be delivered by the end of 2024.[90] DSS said:

The strategy is part of the government's commitment to delivering a coherent national agenda to support carers in their caring role while maintaining their own wellbeing. The key objective is that the strategy should provide a framework for the coordination of carer policy across Commonwealth portfolios, including aged care, disability, veterans' affairs and mental health.[91]

3.60Providing carers with the supports they need and removing barriers to access is clearly important and should remain a key priority, particularly for vulnerable groups. However, other factors that limit people’s capacity to take on caring roles also need to be addressed, to ensure carers are recognised and have their rights protected, and to raise awareness of carers.[92] For example, Tandem recommended the new strategy addresses the social and economic conditions that ‘create unviable carer roles’ and progresses the rights of carers, as set out in a reformed Act.[93]

3.61There was support for the social determinants of poor health and wellbeing for carers to be addressed holistically[94] and for evidence-based supports to be delivered to carers.[95] The Australian Healthcare and Hospitals Association (AHHA) called for carers’ health and wellbeing to be prioritised in the healthcare system and said this would be achievable using existing platforms and systems such as electronic medical records. AHHA noted that the addition of a Medicare-funded item for carer assessment and support would minimise additional burdens on clinicians and the healthcare system.[96]

3.62The Committee heard that design of the new strategy should include an emphasis on strong governance, co-design, monitoring, data and evaluation, gender equality and community education.

Governance

3.63The Minister for Social Services is currently responsible for Australian Government support for carers. Prior to 2013, there was a dedicated parliamentary secretary for carers. Carers Australia said this was preferable because it meant that carers and carers’ representatives ‘had someone to go to who also knows who to go to within the executive and within parliamentary circles to explore solutions that don't fit neatly into one portfolio.’[97]

3.64While there may be benefits in a portfolio that combines disability and carer policy and supports, the Committee heard it is important that carers are considered as their own legitimate group with their own needs.[98] Carers Australia said that it ‘wouldn't want to go back to a situation where the focus was very much on what's good for people with disabilities is automatically good for carers.’[99]

3.65Carers Australia called for an Australian Government Minister or Assistant Minister for Carers to lead a whole-of-government approach to carer recognition, inclusion and support.[100]

3.66There was support for a national office for carers to be established to develop the new strategy and to coordinate policy, legislation and programs for carers.[101] CarersTasmania said this would help ensure that carer-inclusive practices are observed across all government departments, and should be led by dedicated staff who are familiar with the history of carer services and policy changes over time.[102] Carers Australia said that an office for carers should focus on the needs and interests of carers, particularly those who are vulnerable, at risk or disadvantaged.[103]

3.67Carers Australia called for a high-level cross-departmental forum to be established to coordinate legislation, policy, programs and services impacting on carers across Australian Government portfolios.[104]

3.68There was support for an independent national carer commission to be established to progress the recognition of carers and their rights under a strengthened Act.[105] Tandem said the carer commissioner is needed ‘to promote integrated policy development across government portfolios and robust accountability mechanisms, including throughout the implementation of the National Carer Strategy.’[106] Redkite suggested that compliance and advocacy should be a focus for a national carer commissioner.[107]

Co-design, monitoring and evaluation

3.69There was strong support for carers and carers’ representatives to be involved in co‑designing, implementing, monitoring and evaluating the new strategy.[108] This would ensure the new strategy complies with the Act’s obligation to consult carers or bodies that represent carers when developing or evaluating carer supports.[109]

3.70DSS said that the new strategy will be developed in consultation with carers ‘to ensure it reflects the diversity of challenges and the needs of carers’ and will be informed by policy work that is already underway across Australian Government portfolios.[110]

3.71The Committee heard that the strategy should instead be co-designed with carers to ensure carers are treated as genuine partners in care provision. Queensland Alliance for Mental Health (QAMH) and Arafmi Ltd argued that co-design, not consultation, should be the default way to develop and evaluate carer supports with carers and their representatives.[111]

3.72The McCabe Centre for Law and Cancer suggested that a carer’s advisory panel should have a role in monitoring compliance with the Act.[112] The previous chapter noted that some states have established carer advisory councils that work to advance the interests of carers and promote compliance with their state’s carer recognition legislation and carers charter.

3.73For carers to meaningfully engage in consultation and co-design, there is a need to ensure the people they care for are looked after while they take time away from caring. One carer described being offered respite care to attend a carers’ planning session. The session ran overtime and when the carer arrived home, the paid carer had already left. The carer was then expected to pay for the respite care.[113]

3.74There was support for robust action plans and outcomes measurements that focus on the needs and challenges experienced by carers to be developed to implement the strategy, with annual reporting on those outcomes, and a stronger focus on evaluation to assess the impact of policy and changes.[114]

Data

3.75The new strategy and implementation plan will need to identify data that will be used to monitor the proposed actions and intended outcomes.[115] More comprehensive data about carers is required to inform policies that improve carers’ health and wellbeing and deliver more appropriately targeted carer supports.[116] Several areas where data could be improved were identified during the inquiry.

3.76The main source of national data about carers is ABS’ SDAC. There are concerns that the definitions used by SDAC are more restrictive than the definition in the Act, and that the survey focuses on the experiences of primary carers.[117]

3.77As noted earlier, many First Nations and CALD carers may not identify with the term ‘carer’ or may have different understandings of what the term means. This poses challenges for ensuring First Nations and CALD carers are accurately represented in carer data.[118]

3.78Similarly, there is a lack of consistent, national data on lesbian, gay, bisexual, transgender, intersex, queer/questioning, asexual and other sexually or gender diverse (LGBTIQA+) people who provide care. Carers Australia said:

This is in part attributed to the way questions on identification are asked in government surveys, and no reliable and indicative data about the demography of LGBTIQ+ people who are carers, or who need formal or informal care support, which suggests that carer supports could be better targeted.[119]

3.79The Centre for Excellence in Child and Family Welfare called for more research and more frequent data collection, particularly with young and First Nations carers.[120]

3.80There was support for a new national survey on carers’ health, wellbeing and suicide risk factors and behaviours.[121] Currently, the key source of information about carers’ health and wellbeing is the Carer Wellbeing Survey, which has been conducted in 2021, 2022 and 2023. This survey provides data about changes in carers’ wellbeing over time but does not specifically include information about suicide risk factors. Participants are recruited through invitations sent by carer services and organisations across Australia, social media advertising targeted to carers, and invitations to previous participants. The survey was translated into simplified Chinese, Arabic, Italian and Vietnamese, which were the most common languages spoken by carers in the 2021 ABS Census.[122]

3.81The Australian Healthcare and Hospitals Association advocated for surveys of carers’ health and wellbeing to be distributed nationally through the Australian Institute of Health and Wellbeing (AIHW) or the ABS ‘to reach carers who are not linked in with services and organisations’.[123] Similarly, Mental Health Carers Australia said that the AIHW should be funded to deliver a health and wellbeing survey of carers, and that further resources should be allocated for more research and data mapping of carers.[124]

3.82Suicide Prevention Australia said that the states and territories should be required to ‘record and report on deaths by suicide and suicide attempts among carers and former carers through their Suicide Deaths Registers and other reporting systems including the Australian Bureau of Statistics and the National Coronial Information System.’[125]

3.83Relationships Australia said that the new strategy requires a research plan for building the evidence base more broadly about carers, based on many of the recommendations of the Standing Committee on Family, Community, Housing and Youth’s 2009 Inquiry into Better Support for Carers. Relationships Australia added that this should include evidence on:

• the monetary value of work undertaken by carers
• the contemporary financial costs to households where one or more family member is a carer
• whether, how, and how often, carers access support, and barriers to accessing supports
• accessibility of respite care
• kinds of support accessed by carers
• carers’ experiences of flexible employment and education
• carers’ unmet health needs, including psychosocial needs
• the effectiveness of Australian Public Service employment practices in supporting carers
• the types of support that carers want but cannot access
• the availability and effectiveness of interventions to promote social inclusion of carers and those for whom they care.[126]
  84. The Committee heard that there is a need to ensure carers’ needs are represented in health care system data.[127] While there are frameworks to assess carers’ needs in the health care system, evidence suggests these could be better implemented. AHHA said:

More data collected through standardised assessment frameworks is needed to guide government spending and allocation of resources and services for carers. Comprehensive data will identify carers’ outcomes, the suitability of existing services, and clinicians’ knowledge, skills and practices in conducting carer assessments.[128]

Gender equality

3.85Gender equality is about making sure all people have the same rights, responsibilities and opportunities. Gender inequality can be made worse by the intersectionality of other forms of exclusion or disadvantage, such as those related to a person’s First Nations identity, CALD background, migrant status, disability, gender identity or sexuality, age or socio-economic status.

3.86There was support for the new strategy to include a focus on gender equality in the development of policies affecting carers.[129] Since most carers are women, women unequally experience poverty and financial hardship throughout the course of their lifetimes, as well as low wellbeing and high levels of psychological distress, and social isolation as a consequence of providing care.[130] Women who provide care are more at risk of family violence and are more limited in their ability to leave violent relationships because of their caring roles and obligations, and financial insecurity.[131]

3.87Gender norms or stereotypes shape expectations about the types of roles people perform. The idea that caring is ‘women’s work’ or is ‘just something that women do’ both devalues caring and excludes and disadvantages women.[132] It also means that men can face discrimination or feel invisible and lack support when they take on caring roles.[133] The Committee heard that policies and programs that counter harmful gender stereotypes,[134] and that value caring, while addressing the financial disadvantages faced by carers,[135] will help address gender inequality in Australia.

3.88Mr Greg Smith highlighted that carer supports are often targeted at women, and argued there needs to be more work to recognise that men care too, and to provide supports and services that are appropriate for men.[136] Mr Smith noted that the Australian Men’s Health Forum developed a ten-step guide to improving men’s access to health services, which includes ways to improve promotion, and to address any structural and cultural barriers.[137]

3.89The Australian Government released Working for Women: A Strategy for Gender Equality in March 2024, which outlines the Australian Government's vision for making progress towards gender equality over the next 10 years. The strategy focusses on five priority areas:

• gender-based violence
• unpaid and paid care
• economic equality and security
• health
• leadership, representation and decision-making.
  90. Key outcomes relating to unpaid care would include narrowing the unpaid work and care gap between women and men and narrowing the gap between women working part-time or flexibly.[138]

Addressing financial disadvantages faced by carers

3.91There was support for a new strategy that includes policies that address the financial disadvantages carers face over their lifetime and make it easier for carers to balance their caring responsibilities with work, which would reduce gender inequality in Australia.[139]

3.92The Senate Select Committee on Work and Care (Select Committee) considered these issues and recommended a comprehensive and integrated approach to addressing the challenges of work and care across workplace relations, early childhood education and care, paid leave, disability and aged care, and financial supports for carers.[140]

3.93This Committee heard similar suggestions for policy reform to those examined by the Select Committee. For example, there was strong support for policies that address the loss of superannuation by carers, such as extending superannuation guarantee payments in recognition of carers’ service and time spent out of the workforce.[141]

3.94Kiind called for a carer credit scheme that provides a pension top-up for carers. Similar schemes have been introduced in some European countries such as Germany. Kiind said carer credits could ‘“top up” an individual’s pension contributions to the value of what they would be if the individual was working full-time.’[142]

3.95Consideration of a carer credit scheme was recommended by the Select Committee, which said there is merit in considering a range of options to address retirement income gaps for carers.[143]

Flexible work arrangements

3.96The Select Committee received considerable evidence supporting carers having access to more flexible work arrangements. It recommended amending the FairWorkAct 2009 to broaden the definition of ‘immediate family’ and to investigate whether personal and carer’s leave should be split into two separate leave entitlements.[144]

3.97This Committee heard that workplaces that provide flexible work arrangements allow carers to balance their employment with their caring role and are particularly important for women given that women are overrepresented as carers in Australia.[145] There was support for improved flexible work arrangements across the economy to assist carers to maintain employment.[146] For example, MentalHealth Carers Australia said:

Flexible workplaces can have a considerable positive impact on carers’ financial and wellbeing. Flexible workplaces allow carers to adjust their hours and days of work which particularly for mental health carers allows them to provide support when the person they are supporting is unwell. There are well known and documented impacts on employment for mental health carers associated with the fluctuating and episodic nature of mental ill-health. Flexible workplaces allow primary carers to continue to engage in employment opportunities, reduce their reliance on carer payments and help to reduce the gap in their superannuation and retirement outcomes.[147]

3.98Merri Health suggested broadening the obligation for employers to provide workplaces that are supportive of carers, and increased transparency and reporting to encourage accountability.[148] According to one carer, ‘this could help employers in a tight skills market, increase workplace diversity, improve workplace culture – as well as helping carers keep their heads above water.’[149]

3.99Several Australian Government departments currently report on their obligations under the Act by outlining how their human resources policies comply with the principles contained in the Statement for Australia’s Carers, including detailing how their respective enterprise agreements include carers’ leave entitlements.[150] However, there is inconsistency in how agencies’ compliance with the Act is being reported.

3.100Carers Australia called for reporting requirements to be strengthened and recommended the Australian Public Service Commissioner review Australian Public Service (APS) employment principles and workplace policies and practices against obligations under the Act and provide best practice examples for government and non-government employers.’[151]

3.101In October 2023, the Australian Government launched the Carer Inclusive Workplace Initiative in partnership with Carers Australia. The Government has provided $2million over three years to 2024-25 to deliver the Carer Inclusive Workplace Initiative.[152] This will help employers develop and adopt practices that support employees with caring responsibilities. Employers that are endorsed as carer inclusive workplaces can display a logo at their business and in marketing materials.[153]

3.102Other countries, such as Belgium, have laws providing carers with paid carers leave and flexible work arrangements.[154] McCabe Centre for Law and Cancer described Canada as ‘a model for a more comprehensive system of financial support for carers’ through income support, job protected leave, right to request flexible work and non-refundable tax credits for caregivers.[155]

Carers’ Income Tax Offset

3.103There was support for establishing an income tax credit for carers returning to the paid workforce.[156] The concept of a Carers’ Income Tax Offset (CARITO) was suggested by KPMG in 2022. KPMG proposed the CARITO as a non-refundable tax offset that takes the same general form as the Low and Middle Income Tax Offset. The amount would be calculated as a basic offset amount multiplied by the number of years, or part thereof, of unpaid caring work undertaken.[157]

3.104MS Australia noted that while the CARITO would not be gender-specific, it would have a substantial benefit for female carers since most carers are women.[158]

3.105Another suggestion was to allow couples to split their income to reduce the tax payable by one partner in recognition of the significant unpaid work performed by the other.[159]

Community education campaign

3.106The Committee heard there is a need for ongoing, national community education promoting recognition of carers and access to supports, given evidence of low awareness of carers and their needs.[160] Public education on carer awareness is required both across the community and in the systems and industries that carers use and navigate[161] and actions are required to reduce stigma associated with caring roles.[162]

3.107For example, Suicide Prevention Australia said that a national office for carers should lead the development of a national community education campaign ‘in consultation with peak bodies and key organisations providing service to carers, to address stigmatisation of care, help identify the different types of caring and diversity of carers, knowledge of carer rights, and pathways to support.’[163]

3.108The City of Newcastle said that a community education campaign should ‘raise awareness about the diverse needs of carers, support the reduction of stigma, and drive positive workplace cultures’ and should include targeted strategies to raise awareness among CALD communities.[164]

3.109GenWest argued that a national community education campaign should address rigid gender stereotypes relating to care provision, ‘including the low status of care work, celebrate the diversity of care and carers, and increase knowledge of carer rights and supports.’[165]

3.110Little Dreamers Australia called for a targeted awareness campaign to inform young carers, their families, schools and the wider community about the supports available to young carers, including Carer Gateway.[166]

Carer card

3.111There was some support for improving the recognition of carers through the introduction of a carer card, which was one of the recommendations of the AustralianHuman Rights Commission’s 2013 report Investing in Care.[167] For example, Carers ACT suggested implementing a carer card that is not means tested, easy to apply for, provides evidence that someone is recognised as a carer and enables carers to access benefits and discounts through participating businesses.[168]

3.112Victoria has a Carer Card program that provides carers with travel concessions and discounts and other benefits from local government and some community organisations and businesses.[169] The discounts are like those available to Seniors Card holders in Victoria and carers can search for participating organisations on the Carer Card Program website.[170] Evidence from Neighbourhood Houses Victoria suggests that there may be low awareness of the program by Victorian businesses.[171]

Committee comment

3.113The Committee was concerned by carers’ negative experiences of Carer Gateway, particularly evidence that some carers believe it is not worth their time engaging with the system, that it is too slow to deliver support, and that the supports provided do not meet carers’ needs. There was evidence suggesting some providers and staff may have low awareness of program guidelines, particularly carer eligibility for support. The current evaluation of Carer Gateway may indicate other areas in which carers’ experience of the program can be improved. In responding to the findings of the evaluation, the Australian Government should carefully consider the experiences of carers who use the service.

3.114The current operating hours of Carer Gateway call centres are too restrictive, particularly for those who combine caring with education and work and should be reconsidered. As a minimum, Carer Gateway should provide a 24-hour crisis hotline with access to emergency supports such as respite and phone counselling.

3.115Carer Gateway should be better integrated with other key services that carers interact with and rely on. Protocols should be established to ensure that referrals are made to Carer Gateway from My Aged Care, NDIS and Centrelink, and vice versa. Again, the Australian Government should carefully consider the user experience of accessing these services in co-design with carers.

3.116The timeliness, flexibility and transparency of support provided to carers are of significant concern. Many carers are not receiving the help they need, when they need it, and are unsure about what support they are eligible for. Details about how much support carers are eligible for are currently not easily available on the CarerGateway website. While the Committee sees benefit in the use of carer assessments to access tailored support packages, it must be remembered that carers are time poor. It makes little sense for a one-hour assessment to be required to access a few hours of support, and in most cases, carers shouldn’t have to undergo more than one assessment each year. Carers should be provided with an annual support budget so they can decide how best to spend it.

3.117The Committee recommends that, in the next funding agreement, the Australian Government ensure there is a simple process for carers to gain support when it is most needed and strengthen the supports provided to carers via Carer Gateway by:

• improving the quality and consistency of advice and client service by CarerGateway support providers through enhanced training and performance monitoring
• expanding the operating hours of the helpline, including providing access to 24-hour crisis support
• better integrating Carer Gateway with other key services that carers interact with, such as My Aged Care, the National Disability Insurance Scheme and Centrelink
• relaxing requirements for carer assessments to be conducted in order to access support and ensuring that, under normal circumstances, carers receive no more than one assessment each year
• allowing carers more flexibility to access supports that meet their needs such as practical and physical help at home
• providing transparency around what supports carers are eligible to access, and more agency to carers to decide how to spend their support budgets.
  118. These reforms should be co-designed with carers and carers representatives.
  119. The Committee was concerned by evidence of a lack of quality, local respite care options that are appropriate for a diverse range of carers. Carers should not need to admit the person they care for or themselves to a hospital emergency department to have a break from caring if they are unable to continue in their role due to the mental and emotional toll of providing care, or if they are injured or otherwise unwell. Similarly, carers should not need to perpetually take on all responsibility for care because they do not trust the quality of the respite care services that are available. There is a need for more complex care respite options and services tailored to diverse groups including First Nations and CALD carers. Carers engaged in policy work such as strategy co-design and monitoring should be able to access free respite care.
  120. The Committee notes that the Select Committee called for a review of the accessibility, availability, and flexibility of respite care.[172] While it is important that the provision of respite care is carefully considered, the issue is too serious to wait for a review before any action is taken. The Committee urges the Australian Government to invest now in high quality respite care options that are appropriate for diverse needs.

3.121The Committee recommends that the Australian Government work with the carer sector to identify capacity building for high-quality, respite care options that are appropriate for a diverse range of carers and the people they care for, including those that require complex care.

3.122The Committee was concerned by evidence that the counselling and mental health support provided by Carer Gateway is not meeting carers needs. Providing carers who are in distress with immediate access to counselling and other mental health supports should be prioritised.

3.123The Committee recommends that the Australian Government examine how to increase access to high-quality counselling and mental health support options for a diverse range of carers.

3.124Further work is required in cooperation with the Minister for Health and the states and territories to ensure that carers’ health and wellbeing is supported holistically with evidence-based treatments and that carers are prioritised in the healthcare system and other settings. This includes the implementation of standardised assessment frameworks for carers, training for practitioners and other workers who interact with carers in identifying and supporting carers, and consistent reporting of carer suicides and suicidality. These actions will support carers’ health and wellbeing now and will generate important new data to guide carer policy in the future.

3.125The Committee recommends that the new National Carer Strategy prioritise carers’ health and wellbeing, including through:

• the implementation of standardised assessment frameworks for carers in healthcare settings
• training for practitioners and other workers who interact with carers in identifying and supporting carers
• consistent reporting of carer suicides and suicidality.
  126. While there was limited evidence supporting the introduction of a Medicare funded item for carer assessment and support, the Committee considers it is an idea worth investigating further because it would prioritise carers’ health by incentivising practitioners to consider carers’ needs.
  127. There is a need to ensure that mainstream Carer Gateway services are culturally safe spaces for First Nations and CALD carers, and to explore collaborative partnerships that improve referral pathways and programs for diverse carers. Funding to establish close links between mainstream services and community organisations would be beneficial in encouraging carers to seek support and to help carers navigate the support system. Priority should be given to funding Aboriginal and Torres Strait Islander community-controlled organisations and CALD community groups in the delivery of services in their communities. Mainstream Carer Gateway service providers should be required to meet diversity targets to encourage greater engagement with diverse communities and more diversity in service users.

3.128The Committee recommends that the new National Carer Strategy include targeted support for First Nations and culturally and linguistically diverse (CALD) carers, including:

• enhanced training and guidelines to encourage cultural safety and appropriate support for diverse communities for Carer Gateway service providers
• fostering collaborative links between Carer Gateway service providers and First Nations and CALD community organisations to encourage culturally diverse carers to seek support and to help them navigate the support system
• funding for First Nations and CALD community organisations to deliver CarerGateway services
• establishing diversity targets to encourage greater engagement by CarerGateway service providers with diverse communities and more diversity in service users.
  129. There is a need for Carer Gateway to provide better access to training to help carers provide care safely, including manual handling, first aid, medication management and wound care, mental health first aid and suicide intervention. Training should be available in person as well as online.

3.130The Committee recommends that, by December 2024, the suite of available training options offered by Carer Gateway be expanded to include manual handling, first aid, medication management and wound care, mental health first aid and suicide intervention. Options for in-person and online training should be provided.

3.131The Committee welcomes the Australian Government’s commitment to delivering a new national carer strategy by 2024. It is important that the new strategy outlines how governments will work to implement the Act, to address the reasons why caring may be unviable for carers and to ensure that carers can access the supports they need. One of the goals of the strategy should be to ensure that there are enough carers to meet demand for care in the future. To do this, we must minimise the negative impacts that caring has on carers’ financial security, their mental and physical wellbeing, and their social relationships.

3.132The 2011 strategy was intended to give effect to the principles of the Act and guide carer policy for a decade. Instead, it was replaced with an approach that focuses on the provision of carer supports through Carer Gateway, which was just one of the six priority areas of the 2011strategy. The Committee considers that all the priority areas identified by the 2011 strategy remain important areas of concern for carers and should be addressed in the new strategy.

3.133There is currently inadequate guidance provided to carers about how to raise a complaint about Carer Gateway services. Complaints about Carer Gateway should be clearly directed towards service providers and the Australian Government in the first instance. A process should be developed to address breaches of the Act using existing mechanisms such as the Commonwealth Ombudsman.

3.134The Committee recommends that the Australian Government establish a process to handle complaints and address breaches of the Carer Recognition Act 2010.

3.135In keeping with the recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, the strategy should be co-designed with and monitored by carers and carers representatives to ensure carers are treated as genuine partners in care provision. The new strategy should have robust action plans, outcomes measurement and reporting and evaluation frameworks. The previous chapter recommended that a revised Act include a requirement for the strategy to be reviewed every five years.

3.136The Committee recommends that the new National Carer Strategy:

• gives effect to the principles of the Act
• includes actions to address the negative impacts that caring has on carers’ financial security, their mental and physical wellbeing, and their social relationships
• is co-designed and monitored by carers and their representatives
• has robust action plans, outcomes measurement and reporting and evaluation frameworks.
  137. There is a need for more comprehensive data to inform policy and to track outcomes for carers. The key source of national information about carers, the SDAC, is focussed on primary carers and is not representative of the experience of all carers. The SDAC should be broadened so that the definition of carer used in data collection is the same as the definition of carer in the revised Act. Further work is needed to ensure that First Nations, CALD and LGBTIQA+ carers are accurately represented in national surveys and other data.

3.138The Committee recommends that the Australian Bureau of Statistics’ (ABS) Survey of Disability and Carers (SDAC) be redesigned prior to the conduct of the 2025 survey to be representative of all carers as defined in a revised Act.

3.139The ABS should develop actions to ensure that First Nations carers, CALD carers and LGBTIQA+ carers are accurately represented in the SDAC.

3.140There are concerns that there is a lack of evidence about carers’ health, wellbeing, and suicide risk factors. Currently, the annual Carer Wellbeing Survey is the key source of information about carers’ health and wellbeing but does not include information about suicidality. It may not adequately represent carers who are not already linked into services or advocacy organisations. There may be benefits in the survey being distributed nationally through the AIHW or the ABS. Further funding for research and data mapping of carers is needed.

3.141The Committee recommends that the Australian Government:

• fund research and data mapping of carers
• review the scope and design of the Carer Wellbeing Survey to ensure that it is representative of all carers, is longitudinal and collects sufficient evidence about carers’ health, wellbeing, and suicide risk factors.
  142. The Committee notes that the previous strategy was silent on gender equality. While many men are carers, most of Australia’s carers are women and this has significant implications for the lives of women, the gender pay and superannuation earnings gaps, and the representation of women in leadership roles. The new strategy should include gender equality as a key priority area.
  143. Achieving gender equality will require overcoming gender norms that mean that the burden of care mostly falls on women’s shoulders.

3.144The Committee recommends that gender equality be included as a key priority of the new National Carer Strategy, to be addressed by actions that:

• overcome harmful gender norms that devalue caring roles and disadvantage women
• encourage more men to become carers and improve access to the types of supports men need
• address the financial disadvantages carers experience over their lifetime.
  145. While the adequacy of carer payments is out of scope for this inquiry, the Committee recognises that many carers experience significant financial hardship because of the demands of their caring role and a lack of opportunities to work. This is a key driver of financial inequalities between men and women. Many individuals voiced their concerns that the current level of income support for carers was too low, and that the income test was too restrictive and a disincentive to work. Similarly, there is a need to ensure that carers are not disadvantaged in retirement because of their service as carers. These issues were considered by the Select Committee and the Australian Government is currently considering its response to the Select Committee’s recommendations. Evidence to this inquiry strongly supports many of the Select Committee’s recommendations, including the proposal to adopt a carer credit scheme to help address the loss of superannuation by carers.
  146. The Committee supports providing carers with access to programs of financial support such as superannuation accrued during caring, tax offsets and other incentives.
  147. Flexible work arrangements are a key determinant of carers being able to balance work and care. The Select Committee’s recommendations to strengthen flexible work provisions in the FairWorkAct 2009 may, if enacted, create more carer-friendly workplaces in Australia. However, it is important that the Australian Government lead by example in creating workplaces that support employees to combine work with care. The Australian Public Service Commission (APSC) should review APS employment principles and workplace policies and practices against the obligations in the Act and provide best practice examples for government and non-government employers.

3.148The Committee recommends that the Australian Public Service Commission (APSC) review Australian Public Service employment principles and workplace polices and practices for compliance with a revised Act and provide best practice guidance and examples. The APSC should commence the review one year after a revised Act has been established.

3.149There is merit in implementing a non-refundable tax credit scheme for carers. This would recognise and value the time carers spend dedicated to unpaid care work and would represent affirmative action in addressing gender inequality in the provision of care. Further options to incentivise caring and address gender inequality in care provision through the income tax system should be considered.

3.150The Committee recommends that the Australian Government introduce an income tax credit for carers returning to the paid workforce and consider other options to incentivise and recognise the impact of caring through the income tax and superannuation systems.

3.151A community education campaign is needed to promote recognition and awareness of carers in their diversity, to address harmful gender stereotypes and reduce stigma, and to drive positive workplace cultures for carers. The campaign should inform the public, and the services and industries that carers rely on, about carers’ needs and how to better support them. Targeted strategies for First Nations and CALD communities will be required.

3.152The Committee recommends that an ongoing community education campaign form part of the new National Carer Strategy. The campaign should:

• promote recognition and awareness of carers' rights and the diversity of carers
• address harmful gender stereotypes and reduce stigma associated with caring roles
• drive positive workplace cultures for carers
• aim to inform the public, and the services and industries that carers rely on, about carers’ needs and how to better support them
• include targeted information and strategies appropriate for First Nations and CALD communities.

Ms Susan Templeman MP

Chair

21 March 2024

Footnotes

[1]Department of Social Services (DSS), Submission 70, page 6.

[2]Carers Australia, Submission 111, page 12; Kiind, Submission 51, page 5; Australian Federation of Disability Organisations, Submission 137, pages 7 and 11.

[3]Merri Health, Submission 103, page 5.

[4]Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA), National Carer Strategy, 2011, page 7.

[5]FaHCSIA, National Carer Strategy: Implementation Plan, 2011, pages 29-30.

[6]FaHCSIA, National Carer Strategy: Implementation Plan, 2011, page 18.

[7]FaHCSIA, National Carer Strategy: Implementation Plan, 2011, page 9.

[8]Carers Australia, Submission 111.1, page 3.

[9]Ms Sue Elderton, Senior Policy Officer, Carers Australia, Committee Hansard, 17 October 2023, page 2.

[10]DSS, Submission 70, page 10.

[11]DSS, Carer Gateway, ‘About’, www.carergateway.gov.au/about, viewed 12 September 2023.

[12]DSS, Exhibit 5, Carer Gateway Service Provider ManualV1.2, March 2021,pages 39-40.

[13]DSS, Exhibit 5, Carer Gateway Service Provider ManualV1.2, March 2021, pages 46-47.

[14]DSS, Carer Gateway, ‘Services and support’, www.carergateway.gov.au/services-and-support, viewed 14September 2023.

[15]DSS, Submission 70, page 8.

[16]DSS, Submission 70.2, Attachment 1, page 2.

[17]DSS, Submission 70, page 9.

[18]DSS, Submission 70.2, page 6.

[19]DSS, Annual Report 2021-22, pages 95-96.

[20]DSS, Submission 70, page 9.

[21]Name Withheld, Submission 1, page 1; Ms Victoria Green, Submission 105, page 2.

[22]Name Withheld, Submission 13, page 4; Tandem, Submission 123, pages 18-19.

[23]Name Withheld, Submission 49, page 6; Danijela Hlis, Submission 12, pages 1-2.

[24]Name Withheld, Submission 28, page 5; Name Withheld, Submission 3, page 3; Name Withheld, Submission6, page 3; Name Withheld, Submission 143, page 3.

[25]Name Withheld, Submission 143, page 3.

[26]Name Withheld, Submission 143, page 3.

[27]Tandem, Submission 123, page 8.

[28]Tandem, Submission 123, pages 18-19.

[29]Name Withheld, Submission 2, page 3.

[30]Ms Mary Pilkington, Submission 87, page 3.

[31]Ms Mary Pilkington, Submission 87, page 3.

[32]DSS, Submission 70.3, page 5; DSS, Carer Gateway, ‘Speaking up for someone’, www.carergateway.gov.au/speaking#a3, viewed 13 November 2023. There is a link on the Department of Social Services website (dss.gov.au) at the bottom of the home page to make a complaint directly to the department.

[33]Ms Mary Pilkington, Submission 87.1, page 1.

[34]DSS, Carer Gateway, ‘Services and support’, www.carergateway.gov.au/services-and-support, viewed 14September 2023.

[35]Ms Jacqueline de Mamiel, Little Dreamers, Young Carer Participant, Committee Hansard, 4 October 2023, page 5.

[36]Chamber of Commerce and Industry of Western Australia, Submission 10, page 3.

[37]Research Centre for Palliative Care, Death and Dying, Flinders University, Submission 16, page 5.

[38]Ethnic Communities' Council of Victoria (ECCV), Submission 99, page 6.

[39]DSS, Submission 70.2, pages 7-8.

[40]City of Newcastle, Submission 43, page 5.

[41]Research Centre for Palliative Care, Death and Dying, Flinders University, Submission 16, pages 5 and 7.

[42]Name Withheld, Submission 28, page 5.

[43]Name Withheld, Submission 143, page 3.

[44]Neighbourhood Houses Victoria, Submission 114, page 3.

[45]DSS, Carer Support Framework - Integrated Carer Support Service, December 2019, page 3.

[46]Ms Kelly Spence, Acting Group Manager, Disability Employment and Carers, DSS, Committee Hansard, 24October 2023, pages 5-6; Ms Robyn Shannon, Deputy Secretary, Disability and Carers, DSS, CommitteeHansard, 24 October 2023, page 5.

[47]Tandem, Submission 123, page 8.

[48]Danijela Hlis, Submission 12, page 2.

[49]Name Withheld, Submission 13, page 4.

[50]Name Withheld, Submission 11, page 4.

[51]Mr Colin Allchurch, Submission 30, page 2.

[52]Carers ACT, Submission 58, page 8; Name Withheld, Submission 106, page 3.

[53]Support Groups Queensland Inc, Submission 52, page 3.

[54]Queensland Alliance for Mental Health (QAMH) and Arafmi Ltd, Submission 41, page 5; Name Withheld, Submission 135, page 4.

[55]DSS, Carer Gateway, ‘What is respite’, www.carergateway.gov.au/what-respite, viewed 1 November 2023.

[56]Name Withheld, Submission 13, page 3; Name Withheld, Submission 26, page 1; QAMH and Arafmi Ltd, Submission 41, page 5; Danijela Hlis, Submission 12, pages 1-2; Tandem, Submission 123, page 8; Name Withheld, Submission 143, page 3; Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, page 3.

[57]Carers ACT, Submission 58, page 8.

[58]Older Persons Advocacy Network, Submission 39, page 5; Name Withheld, Submission 2, page 3;

[59]Carers ACT, Submission 58, page 8.

[60]Carers Australia, Submission 111, page 6.

[61]Carers Australia, Submission 111, page 7. See also: Name Withheld, Submission 49, page 4.

[62]Name Withheld, Submission 2, page 1.

[63]Carers ACT, Submission 58, page 8.

[64]Childhood Dementia Initiative, Submission 133, pages 4-5

[65]Name Withheld, Submission 2, page 1. Carers WA, Submission 113, page 10; Research Centre for Palliative Care, Death and Dying, Submission 16, page 7; The University of Melbourne Graduate Student Association, Submission 34, page 12; Older Persons Advocacy Network, Submission 39, page 4.

[66]Chamber of Commerce and Industry of Western Australia, Submission 10, page 3; City of Newcastle, Submission 43, page 5.

[67]Lyndis Flynn and Margaret Shelton, Submission 101, page 2.

[68]Name Withheld, Submission 48, page 1.

[69]DSS, Carer Gateway, ‘A guide to counselling for carers’, https://counselling.carergateway.gov.au/s/article/A-guide-to-counselling-for-carers, viewed 1November2023.

[70]DSS, Carer Gateway, www.counselling.carergateway.gov.au/s/for-carers-details, viewed 16October2023; Name Withheld, Submission 11, page 2.

[71]Arrangements can be made for access to counselling sessions provided by Carer Gateway service providers via video or telephone in certain circumstances. DSS, Submission 70.3, page 3.

[72]Name Withheld, Submission 18, page 4.

[73]Name Withheld, Submission 48, page 1.

[74]Name Withheld, Submission 143, page 4.

[75]Tandem, Submission 123, page 4.

[76]Autism Awareness Australia, Submission 44, page 2.

[77]DSS, Submission 70.2, attachment 1, page 2.

[78]Carers Australia, Submission 111, page 7.

[79]ECCV, Submission 99, page 6.

[80]ECCV, Submission 99, page 9.

[81]ECCV, Submission 99, page 10.

[82]Australian Human Rights Commission, Submission 32, page 4; Gayaa Dhuwi (Proud Spirit) Australia, Submission 31, pages 4-5.

[83]Australian Human Rights Commission, Submission 32, pages 3, 4 and 9.

[84]ECCV, Submission 99, page 10.

[85]Relationships Australia, Submission 17, page 12.

[86]Name Withheld, Submission 6, page 9; Mrs Frances Findley, Submission 130, page 3.

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

[88]Name Withheld, Submission 48, page 2.

[89]Kiind, Submission 51, page 7.

[90]The Hon Amanda Rishworth MP, Minister for Social Services, Media Release, ‘Investing in a National Strategy and increased supports for Australia’s carers’, 19 October 2023.

[91]Ms Robyn Shannon, Deputy Secretary, Disability and Carers, DSS, Committee Hansard, 24 October 2023, page 1.

[92]Carers Australia, Submission 111.1, page 11; Older Person’s Advocacy Network, Submission 39, page 8; Carers WA, Submission 113, page 6.

[93]Tandem, Submission 123, page 4.

[94]GenWest, Submission 65, page 3; Mental Health Carers Australia, Submission 116, page 3; SuicidePrevention Australia, Submission 22, page 3.

[95]Mental Health Carers Australia, Submission 116, page 3; Suicide Prevention Australia, Submission 22, page3.

[96]AHHA, Submission 8, page 2. See also: Queensland Nurses and Midwives’ Union, Submission 72, page 4.

[97]Ms Sue Elderton, Carers Australia, Committee Hansard, 17 October 2023, page 3.

[98]Mrs Jane Bacot-Kilpatrick, Chief Executive Officer, Carers Australia, Committee Hansard, 17 October 2023, page 3.

[99]Ms Sue Elderton, Carers Australia, Committee Hansard, 17 October 2023, page 3.

[100]Carers Australia, Submission 111.1, page 11.

[101]Carers Australia, Submission 111.1, page 11; Suicide Prevention Australia, Submission 22, page 3; CarersTasmania, Submission 57, page 10.

[102]Carers Tasmania, Submission 57, page 10.

[103]Carers Australia, Submission 111.1, page 11.

[104]Carers Australia, Submission 111.1, page 11.

[105]Redkite, Submission 53, page 10; Tandem, Submission 123, page 3.

[106]Tandem, Submission 123, page 3.

[107]Mr Tim Rogers, National Advocacy Manager, Redkite, Committee Hansard, 4 October 2023, page 45.

[108]Everymind, Submission 77, page 4; GenWest, Submission 65, page 3; MS Australia, Submission 91, page 5; Tandem, Submission 123, page 14; Relationships Australia, Submission 17, page 15; Carers Australia, Submission 111.1, page 11.

[109]Dementia Australia, Submission 35, page 7.

[110]Ms Robyn Shannon, Deputy Secretary, Disability and Carers, DSS, Committee Hansard, 24 October 2023, page 1.

[111]QAMH and Arafmi Ltd, Submission 41, page 6. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability similarly recommended that governments adopt the principle of co-design, co-production and peer-led design processes in national decision-making. See: Disability Royal Commission, Final Report, ‘Executive Summary’, September 2023, page 72.

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

[113]Name Withheld, Submission 96, page 2.

[114]Carers Australia, Submission 111.1, page 11; McCabe Centre for Law and Cancer, Submission 80, page 3; Merri Health, Submission 103, page 6; Tandem, Submission 123, page 14.

[115]Carers Australia, Submission 111.1, page 11.

[116]Merri Health, Submission 103, page 6; Relationships Australia, Submission 17, pages 7-8; SuicidePrevention Australia, Submission 22, page 8; City of Newcastle, Submission 43, page 5.

[117]Carers Australia, Submission 111, page 31.

[118]Carers Australia, Submission 111, page 8.

[119]Carers Australia, Submission 111, page 8.

[120]The Centre for Excellence in Child and Family Welfare, Submission 121, page 4.

[121]Suicide Prevention Australia, Submission 22, page 8; Mental Health Carers Australia, Submission 116, page4.

[122]Carers Australia and the University of Canberra, Caring for Others and Yourself: 2023 Carer Wellbeing Survey, October 2023, page v.

[123]Australian Healthcare and Hospitals Association, Submission 8, page 18.

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

[125]Suicide Prevention Australia, Submission 22, page 8.

[126]Relationships Australia, Submission 17, pages 7-8. See also: House of Representatives Standing Committee on Family, Community, Housing and Youth, Who Cares...?: Report on the inquiry into Better Support for Carers, May 2009, recommendations 23, 31, 32 and 36.

[127]McCabe Centre for Law and Cancer, Submission 80, page 3; AHHA, Submission 8, page 2.

[128]AHHA, Submission 8, page 2.

[129]Australian Human Rights Commission, Submission 32, page 2; Mrs Deborah Childs, Chief Executive Officer, HelpingMinds Ltd, Committee Hansard, 24August2023, page 1.

[130]See Chapter One.

[131]Ms Rosie Goethel, Manager, Evaluation and Policy, GenWest, Committee Hansard, 5 September 2023, page 5.

[132]Ms Carrie Clark, Chief Executive Officer, Kiind, Committee Hansard, 29 August 2023, page 11.

[133]Mr Greg Smith, Submission 120, page 3; Department of Prime Minister and Cabinet, National Strategy to Achieve Gender Equality Discussion Paper, page 10.

[134]GenWest, Submission 65, page 3.

[135]GenWest, Submission 65, page 6; Women in Super, Submission 50, page 1.

[136]Mr Greg Smith, Submission 120, pages 2-3.

[137]Mr Greg Smith, Submission 120, attachment 2.

[138]Department of the Prime Minister and Cabinet, Working for Women: A Strategy for Gender Equality, March2024, page 44.

[139]GenWest, Submission 65, page 6; Women in Super, Submission 50, page 1.

[140]Senate Select Committee on Work and Care, Final Report, March 2023, page 170.

[141]Name Withheld, Submission 1, page 2; Name Withheld, Submission 6, page 9; Name Withheld, Submission11, page 3; Carers WA, Submission 113, page 5; Name Withheld, Submission 131, page 2; Childhood Dementia Initiative, Submission 133, page 10; Chief Executive Women, Submission 134, page 2; Relationships Australia, Submission 17, page 7; Older Person’s Advocacy Network, Submission 39, page 10; City of Newcastle, Submission 43, page 4; Women in Super, Submission 50, pages 1-2; Carers ACT, Submission 58, page 2; Neurological Alliance Australia, Submission 68, page 4.

[142]Kiind, Submission 51, page 4.

[143]Senate Select Committee on Work and Care, Final Report, March 2023, page 197.

[144]Senate Select Committee on Work and Care, Final Report, March 2023, pages 184-185.

[145]Centre for Excellence in Child and Family Welfare, Submission 121, page 4.

[146]Wellways, Submission 117, page 10; Centre for Excellence in Child and Family Welfare, Submission 121, page 4.

[147]Mental Health Carers Australia, Submission 116, page 9.

[148]Merri Health, Submission 103, page 6.

[149]Name Withheld, Submission 6, page 9.

[150]See, for example: 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.

[151]Carers Australia, Submission 111.1, pages 11-12.

[152]The Hon Amanda Rishworth MP, Minister for Social Services, Media Release, ‘Investing in a National Strategy and increased supports for Australia’s carers’, 19 October 2023.

[153]DSS, Submission 70, page 9.

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

[155]McCabe Centre for Law and Cancer, Submission 80.1, page6.

[156]ermha365, Submission 71, pages 6-7; GenWest, Submission 65, page 3; Chief Executive Women, Submission 134, page 7; Relationships Australia, Submission 17, page 7; Suicide Prevention Australia, Submission 22, page 6; City of Newcastle, Submission 43, page 4; MS Australia, Submission 91, page 7.

[157]KPMG, Towards a new and improved era in women’s equality: valuing unpaid work, November 2022, page13.

[158]MS Australia, Submission 91, page 7.

[159]Name Withheld, Submission 6, page 9; Name Withheld, Submission 67, page 2.

[160]Carers WA, Submission 113, page 9; Relationships Australia, Submission 17, page 8; Everymind, Submission 77, page 4; Suicide Prevention Australia, Submission 22, page 3. City of Newcastle, Submission43, page 5; GenWest, Submission 65, page 3; McCabe Centre for Law and Cancer, Submission80, page 3.

[161]Carers WA, Submission 113, page 9; Everymind, Submission 77, page 4.

[162]Everymind, Submission 77, page 4; Suicide Prevention Australia, Submission 22, page 3; City of Newcastle, Submission43, page 5.

[163]Suicide Prevention Australia, Submission 22, page 3.

[164]City of Newcastle, Submission43, page 5.

[165]GenWest, Submission 65, page 3.

[166]Little Dreamers Australia, Submission 54, page 12.

[167]Women, Work and Policy Research Group, and ARC Centre of Excellence in Population Ageing Research, The University of Sydney, Submission 81, pages 2-3.

[168]Carers ACT, Submission 58, pages 4-5.

[169]Victorian Government, Carer Card Program, FAQs, www.carercard.vic.gov.au/faqs,viewed 6October2023.

[170]Victorian Government, Carer Card Program, www.carercard.vic.gov.au, viewed 6October2023.

[171]Neighbourhood Houses Victoria, Submission 114, page 3.

[172]Senate Select Committee on Work and Care, Final Report, March 2023, page 178.