Carer Support Programs

Conclusions

The departments recognise carers as important stakeholders in the health and human services systems and the programs they manage. This is evident through the range of supports made available to carers. The departments and service providers also recognise the care relationship. They include and consider carers in policy and program development, and involve them in decision-making with the people they care for.

The departments recognise that supporting carers is core business. However, they do not treat their carer support programs with the rigour core business warrants. This is evident in gaps in data collection, the failure to assess carer needs, and a lack of outcome measurement. Greater rigour around carer support programs is essential to the ongoing development and improvement of these services. Effective carer supports are particularly important, as the departments’ focus on supporting their clients to remain in their homes and communities is reliant on carers.

Carers experience barriers to accessing supports, such as poor awareness of services and difficulty navigating service systems. The departments’ lack of referral processes, needs assessments, and prioritisation practices for carers across each of the program areas contributes to this. The department and service providers do not identify many carers who may benefit from support services. Inconsistent practices also raise the risk of inequity, particularly for carers trying to access high-demand services.

Despite clear program objectives, such as reduced stress or improved family functioning, the effectiveness of carer support programs is unknown. The departments do not monitor support programs against outcomes for carers and so cannot demonstrate effectiveness. This is a significant gap given the need for effective programs to support the growing community reliance on carers.

Findings

Accessing supports

The departments fund a range of carer support programs, such as counselling, respite and training. However, many eligible carers can miss out because there is limited awareness of available supports, and lack of assessment and referral processes.

Awareness of supports

Carers frequently reported to this audit that they lack awareness of the available supports. It is also a common finding of departmental evaluations of carer supports. This is despite demonstrated efforts by the departments and service providers to promote carer support programs, for example through print and web media and community expos or events. The departments have yet to attempt to understand what is not working and address the problem.

Carer identification and referral

The departments and their funded service providers do not consistently assess, either directly or by referral, the needs of carers they interact with to identify and provide assistance to those who may need and want support. It is therefore likely that some carers in need are missing out.

All program areas have systems in place to identify and record the existence of a carer. Three of the five audited program areas have guidance to prompt staff and service providers to assess carer need, or refer them for assessment and support:

• The Home and Community Care service, in the ageing and aged care program, has a standard tool to assess carer need.
• The palliative care program adopts national assessment tools for its service providers to use on a voluntary basis.
• The standard kinship carer assessment tool prompts the child protection worker to consider the carer's needs and whether they would benefit from a referral to a support service.

However, service providers and departmental staff do not consistently or reliably use the tools in palliative care and child protection.

Consultation with 12 service providers across the five program areas found there was no consistent use of a standardised tool for assessing carer needs. Better identification of carer needs, through referral and assessment processes, would facilitate carer access to supports. This information would also provide the departments with a more complete understanding of their carer population.

Equity of access

Departmental staff and service providers are prioritising carer access to supports differently, and in some cases, subjectively. Consistent prioritisation of carer need is necessary to assure equity and timely access to high-demand services for those in greatest need.

Brokerage funds provide carers with responsive and flexible financial support including assistance to purchase services or one-off material items. The departments are not adequately oversighting brokerage funds for carers, or providing enough guidance to the service providers distributing these funds. Variable practices are evident, such as different funding rules between service providers who are administering the same fund, unexplained variations in average amounts paid by service providers, and a lack of independent processes which allows the same staff to make and approve applications. These inconsistencies raise the risk of inequity for carers.

Timeliness of access

Wait time data is one indicator of the service system’s ability to cope with demand. It can provide useful information to departments and service providers for service planning and development work. However, the departments and service providers do not routinely collect wait time data, which means that timeliness of access to carer supports is unknown.

Anecdotal wait times reported by consulted service providers indicate variable performance within and across program areas. Wait times are measured for one carer support only—case management in disability. Wait times for this service vary from just over a week to 12 weeks across geographical areas. Such variation makes it difficult for carers to have any expectation of how long they may wait for a support.

Experience of supports

The departments and service providers are effective in recognising carers and the care role in policy and program development and delivery. However, they cannot clearly demonstrate the effectiveness of carer support programs.

Carer recognition

There is clear departmental policy guidance to program areas and their funded service providers that states they must recognise the role of carers in their service delivery. Departments and service providers have demonstrated a commitment to realising this policy. Across the audited program areas, the audit found many examples of:

• the involvement of carers in program, policy and service development
• the involvement of carers in planning processes with the person they care for
• the inclusion of carer-related standards in quality assurance regimes.

Carers report varied experiences of recognition by the departments and service providers. Many carers we consulted related good experiences where they felt recognised. Some carers, for example, those caring for people with mental health issues, felt that awareness of their role has been increasing over the past decade. However, all had examples where this had not occurred, and in particular, where their needs as individuals were not always considered. These experiences indicate the ongoing need for effort to embed a culture of carer recognition in service provision.

Effectiveness of supports

The departments are not monitoring outcomes against program objectives to demonstrate the effectiveness of carer supports. Objectives of carer support programs include reducing carer stress, sustaining the care relationship, or improving family functioning. However, consultation with service providers revealed only isolated, ad hoc use of carer-related outcome measurement tools.

The departments have undertaken one-off evaluations of most carer support programs. However, these provide only limited assurance of effectiveness. Often evaluations do not address the objectives of the program, review only a narrow part of a service, and cannot determine effectiveness due to a lack of data on carer-related outcomes.

Recommendations

That the Department of Health and the Department of Human Services:

1. identify and address gaps in the promotion of carer supports to improve carer awareness of services
2. require consistent carer identification and needs assessment
3. improve administration and monitoring of carer brokerage funds
4. monitor and report on timeliness of access to carer supports
5. develop outcome measures for carer supports and monitor outcomes.

Submissions and comments received

In addition to progressive engagement during the course of the audit, in accordance with section 16(3) of the Audit Act 1994 a copy of this report was provided to the Department of Health and the Department of Human Services with a request for submissions or comments.

Agency views have been considered in reaching our audit conclusions and are represented to the extent relevant and warranted in preparing this report. Their full section 16(3) submissions and comments however, are included in Appendix A.

1.1 Introduction

A carer is someone who cares for a relative, partner or friend on an unpaid, informal basis. They may care for someone who is aged, has a disability or mental illness, is terminally ill, or for a related child who can no longer live with their parents. A carer who supports a person in most of their daily activities, such as dressing, eating or social activities, is called a ‘primary carer’.

According to the Australian Bureau of Statistics (ABS) in 2009, 703 000 people, or 13 per cent of Victoria’s population, identified themselves as carers of an aged person or someone with a disability. Of this group, 194 000 identified themselves as the primary carer. The ABS figures do not include carers of people with a mental illness or those caring for related children, called kinship carers.

Kinship carers are family members who care for a child who can no longer be cared for by their parents. This arrangement can be termed ‘formal’, due to the involvement of child protection, or ‘informal’, if child protection is not involved. According to Australian Institute of Health and Welfare data, there were over 2 275 formal kinship carers in Victoria in 2011. The Department of Human Services (DHS) estimates that the number of kinship carers is approximately 10 000 when informal care is included.

Another carer group who are often unrecognised, as they do not identify with the term ‘carer’, are young carers. Carers Victoria estimates there are 105 000 carers under the age of 25 in Victoria.

Victoria will rely more heavily on carers over time. Census data reveals Australia’s population is ageing, and the prevalence of physical and mental illness is also on the rise. As the number of people requiring care increases, and as health and welfare services have moved from institution-based to community care, society’s reliance on carers will increase.

In 2010, Carers Australia estimated that informal carers provided the equivalent of $40.9 billion in care services nationally. Care provided by informal carers reduces the financial burden on the healthcare and human services systems. To sustain the current trend of community and home-based care, carers need support to maintain their care role.

1.2 Carer needs

Carers are not a homogeneous group. They have different needs depending on their age, cultural and ethnic backgrounds and socio-economic status, as well as the needs of the person they care for. However, care responsibilities put additional strains on all carers and affect their financial position, social connections, and health and wellbeing. Commonly, carers are:

• more likely to live in households with below-average incomes. Carers of working age who have had to leave the workforce often experience immediate and future financial hardship, with lost income and less superannuation. Young carers can miss schooling and higher education opportunities
• more likely to have a disability themselves, with 35 per cent of carers having a disability compared with 22 per cent of the general population
• more at risk of mental health problems, such as stress or depression, than other people of the same age
• more likely to suffer declines in their physical health—in 2006, DHS reported that over 50 percent of carers suffered a decline in physical health due to caring, 30 percent reported physically injuring themselves, 70 percent reported persistent low energy and 60 percent reported feeling that their care role reduced their options in life opportunities.

The programs in place to support carers, therefore, need to be able to meet a range of needs, such as assistance with daily tasks, respite from the care role, and counselling and emotional support.

1.3 Carer supports

Common types of carer supports include:

• Respite—provides support for the person receiving care, enabling short-term breaks for carers. Respite care can include overnight stays in residential facilities, day-care or outings, in-home care, community programs, camps or other flexible arrangements.
• Case management—provides assistance with coordinating and facilitating access to supports and services.
• Counselling—provides emotional and psychological support for carers in order to reduce stress and assist with coping strategies.
• Financial support—provides assistance in the form of payments or brokerage funds for goods or services to assist carers to perform their care role.
• Carer advocate/consultant—provides advocacy and peer support.
• Information services—provide carers with access to information, such as: emergency services, carer support, domestic and nursing care, respite options and council services.
• Education and training—provides information and skills to assist carers to carry out their care role safely and effectively.

1.3.1 State-funded carer supports available

The Department of Health (DH) and DHS deliver a range of supports for primary carers. Figure 1A lists the state-funded supports available to carers, the funding provided, and available carer participation rates, as collected by departments. The Commonwealth Government also funds a range of carer supports, including carer payments and the National Respite for Carers Program that funds respite, support and counselling. It is a major contributor to Home and Community Care (HACC) services that carers, particularly those caring for older or disabled persons, can access.

Figure 1A

State-funded carer supports

(a) Includes selected activities through HACC services and the Support for Carers Program.

(b) Approximate figures due to missing/incomplete records.

(c) The Commonwealth funds mental health respite services.

(d) Carers accessing carer support groups, counselling and training are not included in the figure provided as the department does not collect participation data for these activities.

(e) DHS does not fund a respite program for kinship carers. However, departmental policy states that respite is available to all children in out of home care. In practice, carers may be able to access it on an ad hoc basis through their own networks or volunteers within the foster care system. Respite carers can claim reimbursements on these occasions.

(f) Brokerage funds are available to support all children where child protection is involved, and so while kinship carers can access the funds they are not solely aimed at them.

Source: Victorian Auditor-General’s Office.

The state allocates approximately $200.6 million per year for these programs to support approximately 44 700 carers. This includes $21.4 million to HACC respite and day programs through aged care, and $89.4 million to disability respite. The aim of these respite programs is to provide support for the person receiving care to engage in activities (from a couple of hours during the day up to several weeks) such as community programs, camps, holidays, overnights stays, thereby providing the carer with a break from their role. HACC also provides personal care and domestic assistance services which some 40 000 carers can benefit from indirectly.

The remaining $89.8 million goes towards supports that aim to assist the carer directly in their care role and as an individual, such as counselling, facilitation of support groups, education and training, and brokerage funds. Uniquely among the audited program areas, DH funds Carer Consultant positions located in Area Mental Health Services. Carer Consultants have lived experience of caring for someone with a mental illness. They can provide direct support to families and carers, as well as inform service and program planning activities at their service.

Volunteers play an important role in supporting carers in palliative care and disability. There is no current data on the numbers of volunteers in these areas.

1.4 Legislation

Carers Recognition Act 2012

The Carers Recognition Act 2012 (the Act) is intended to recognise and support the needs of people in care relationships, and enact principles to ‘promote understanding of the significance of care relationships’. This legislation brings Victoria in line with Commonwealth legislation and that of four states and one territory.

The Act acknowledges that carers are in a shared arrangement involving the person providing care and the family member or friend for whom they care. Each person in a care relationship should be respected, recognised and supported as an individual.

The principles supported in the Act include that a carer should:

• be recognised as an individual with his or her own needs
• be recognised for the social and economic contribution to the whole community arising from his or her role as a carer
• have his or her social wellbeing and health recognised in matters relating to the care relationship
• have the effect of his or her role as a carer on his or her participation in employment and education recognised and considered in decision-making.

Organisations receiving funds from DH and DHS to provide services or programs that directly impact on carers are obliged to make sure that staff and carers have an awareness and understanding of these principles and reflect them in developing, providing and evaluating services. Funded service providers must report compliance with these obligations in their annual report.

1.5 Departmental responsibilities and policies

DH and DHS are responsible for developing policy and delivering and funding programs to support carers. Figure 1B shows the departmental divisions and program areas that lead this work.

Figure 1B

Departmental divisions and program areas

Source: Victorian Auditor-General’s Office.

The departments deliver carer supports directly but also fund a range of community service organisations to deliver carer supports. These supports target primary carers. Regional department staff monitor the performance of these service providers against funding and service agreements.

Recognising and supporting care relationships (2006)

The Recognising and supporting care relationships policy provides a framework for departmental staff and funded service providers to support informal care by focusing on the relationship between the carer and the person being cared for.

The policy recognises that each person in the relationship can have different needs and outlines three principles to support the care relationship:

• recognition and respect
• support
• participation.

Victorian Charter Supporting People in Care Relationships (2010)

The charter acknowledges the role of carers in our society. It articulates the rights and responsibilities of people in care relationships, and how they can be supported by organisations, governments and the community. The charter states that those in 'care relationships’ should be:

• recognised and respected
• supported to access services
• supported through community awareness raising
• able to take part in care planning and making decisions about care.

The charter is aimed at people in care relationships, government departments and funded service providers. The principles in the charter were used as a foundation for the Carers Recognition Act 2012. A revised charter will be released in 2012 to reflect the new legislation. The Act and the charter guide DH and DHS program activity and funded service provision.

1.6 Audit objective, scope, method and cost

The audit assessed the extent to which DH and DHS are effective in recognising and supporting people who care for others by examining whether:

• supports and services are accessible to carers
• agencies’ practices recognise the role of carers and provide effective support.

The audit covers the support provided and funded by the departmental divisions and program areas as shown in Figure 1B.

Funded community service organisations and carers were included as stakeholders, through interviews with 12 service providers and consultation with 37 carers.

Part 2 of the report examines carers’ access to support programs. Part 3 looks at carer recognition and the effectiveness of supports.

The audit was undertaken in accordance with Australian Auditing and Assurance Standards.

The audit cost was $290 000.

2.1 Introduction

Carers are a vital part of the health and human services system and provide over $40 billion in care nationally. Care provided by informal carers reduces the financial burden on public services and helps to maintain family and community connections.

Carers need a range of flexible services to support them to continue in their care role. Supports need to be responsive to urgent needs and enable carers to build their capacity and plan for the future.

Not all carers identify with the term ‘carer’ and may not seek or be aware of carer support services. Staff in the broader health and human service systems play an important role in identifying carers and facilitating their access to carer support services. Consistent carer identification and referral improves opportunities for carers to access supports.

Access to supports should be transparent, equitable and timely for all carers. Consistent use of carer needs assessments and tools for prioritising urgency of need provide assurance to the community that carers are supported consistently and fairly.

2.2 Conclusion

The departments of Health (DH) and of Human Services (DHS) provide a range of supports to meet a variety of carer needs across their program areas. However, carers cannot always access the supports available to them. Carers lack awareness of supports, despite departmental and service provider efforts to promote them. The departments have not evaluated promotion strategies to determine the cause of this. Carers also have difficulty navigating the system and the departments and their funded service providers do not reliably refer carers to support programs.

There is potential unmet demand for carer supports, but its extent is unknown. Departmental and service provider staff and processes do not consistently identify carers as having needs of their own, assess these needs or refer for assessment, or monitor wait times to access services.

Improvements to the equity and accessibility of supports are necessary to assist carers to maintain their care role and to help address the higher levels of stress and poorer wellbeing they experience compared with their peers.

2.3 Awareness of carer support programs

Carers can access support through a referral from another service or by contacting the service provider directly—‘self-referral’. Health and community services, such as general practitioners, hospitals, aged care homes, disability or mental health services, local government, and schools, need to identify carers and be aware of the carer supports available to facilitate access to them. Carers report a lack of awareness of supports despite demonstrated efforts by the departments and their funded service providers to promote them.

2.3.1 Promotion

The departments and their funded service providers adopt a range of promotion strategies to raise awareness of supports among carers and other health and community services. The method and extent of promotion depends on individual service providers, geographical location and the support type. Strategies include:

• networking between service providers
• distribution of brochures and promotional resources to health centres
• attendance and promotion at local and regional expos and events
• publishing information in regular newsletters, local papers and regional bulletins
• advertising on radio and television broadcasts
• website and internet promotion
• some service providers report using innovative promotional strategies such as smart phone applications and online promotional videos to market their services and raise broader community awareness
• departmental funding of advisory or peak bodies, such as the Kinship Carers Peak Advisory Body.

Effectiveness of promotion

Carers routinely report a lack of awareness of the supports available. Figure 2A provides a summary of program evaluation findings since 2001 relating to promotion and awareness of supports.

Figure 2A

Summary of promotion and awareness findings

(a) The 2001 Support for Carer Program evaluation applied to support programs across ageing and aged care, mental health and disability program areas.

(b) Home and Community Care (HACC).

Source: Victorian Auditor-General’s Office.

Despite these repeated findings, the departments have not undertaken any evaluation of promotion strategies and service providers do not routinely monitor their referral sources. Consultation with 12 funded service providers revealed only one example of a service provider performing a formal evaluation of their promotion methods by asking carers how they found their service.

2.4 Carer identification and referral

The Carers Recognition Act 2012 states that carers should be supported as a person with their own needs as well as in their role as a carer. For this to be realised, service providers need a consistent practice of carer identification and needs assessment. This would increase carers’ awareness of, and access to, the supports available, and improve the departments’ understanding of the carer population.

All program areas have systems in place to identify carers and to record this. However, the extent to which the departments have guidance designed to prompt their staff and service providers to assess carer need, or refer them for assessment and support, is variable. Figure 2B provides an overview of current systems and guidelines to identify carers and consider referral to carer support.

Figure 2B

Carer identification and referral

Source: Victorian Auditor-General’s Office.

Carer identification in Area Mental Health Services (AMHS) and Psychiatric Disability and Rehabilitation Support Services (PDRSS) is not reliable and, as a result, DH’s records are incomplete. To comply with the National Mental Health Standards, all AMHS and PDRSS providers must identify carers as early as possible during their client’s episode of care. However, these services do not reliably identify carers at intake. Instead, mental health clinicians often identify carers later in treatment and then do not update departmental systems.

Child protection workers reliably identify kinship carers and effective use of their assessment tool could result in a referral for carer support. However, child protection staff do not reliably or consistently undertake the assessment. The department has identified staff workload and resources as a reason for this.

Disability services guidelines for staff working with clients to plan their Individual Support Package state that they should consider family or carer needs in the planning process. However, there is no guidance to direct staff to consider referral of carers to supports specifically for them. The Disability Services division in DHS has recently produced the draft ‘Family-centred, person-centred’ practice guide which will address this gap and provides guidance on considering family and carer needs, and making referrals or identifying alternative funding sources for carer supports.

Departmental guidelines for aged and palliative care prompt staff to consider referring the carer to dedicated carer supports. Figure 2C provides a case study of the Home and Community Care (HACC) carer identification and assessment guidance.

Figure 2C

HACC carer identification and assessment guidance

Source: Victorian Auditor-General’s Office.

2.4.1 Navigation

Participants in our five carer focus groups stated that they find navigating the system difficult:

• Carers feel either overwhelmed with information or are not able to find out enough.
• Quality case management greatly assists with system navigation, but is not readily available due to long wait times.
• Identification and referral of carers by schools, general practitioners, hospitals (including private psychiatrists and hospitals) would assist with navigation. However, this does not consistently occur and is dependent on individual practice.
• The most common way that carers found out about supports was word of mouth or through support groups.

These comments suggest there is a degree of luck involved in carers finding and accessing supports. Evaluations of carer support programs in Aged Care (2011) and Disability (2009) also highlighted carers’ difficulties in navigating through the system due to lack of adequate information or referrals from other service providers.

2.5 Equity of access

Regardless of where they live or the diagnosis or condition of the person they care for, carers should expect a consistent and fair response from carer support providers. It is important that each program area has processes to assess and prioritise carer needs so that departmental and service provider staff can identify those most in need and distribute finite resources equitably.

There is a risk of inequitable access to carer supports due to inconsistent needs assessment, prioritisation and brokerage fund management practices.

2.5.1 Carer needs assessment and prioritisation

Accessibility of carer supports varies across program areas and services. The departments do not mandate the use of a carer needs assessment tool. Only one program area, palliative care, suggests a range of tools that providers could use. Among the 12 service providers consulted there is no consistent use of a standardised tool for assessing carer needs. Service providers measure urgency differently and in some cases, subjectively. This variability in needs assessment and prioritisation leads to inconsistency in providing supports and raises the risk of inequity.

Seven of the 12 service providers (two each in aged care and palliative care, one each in mental health, disability and kinship care) conduct formal needs assessments. The remaining five assess needs using informal, subjective assessments, such as conversations with carers.

Eight service providers (four in aged care, two in palliative care and one each in disability and kinship care) use a formal prioritisation tool or framework. Within program areas, there is no consistency in the tool used. One disability provider relies on subjective judgement of carer stress levels, or what the worker can ‘hear in the carer’s voice’ when they contact the service. The three remaining service providers (two in mental health and one in kinship care) do not use any prioritisation method.

Carers in our focus groups indicated an awareness of subjective practices in use, saying they often felt they would only receive a service if they exaggerated their need, or sounded desperate. Most carers reported prompt provision of supports in a crisis. However, this was less common for carers of a person with a disability.

2.5.2 Access to brokerage funds

Brokerage funds are available to carers on request to purchase services and one-off material items. These funds should to be responsive and flexible to address a wide range of carers’ needs, and fund guidelines need to be able to accommodate this if the support is to be effective. However, the departments need to balance this flexibility with maintaining transparency, accountability and equity through effective monitoring and governance.

The mental health and aged care program areas offer flexible brokerage funds to support carers. However, there is inadequate oversight of spending from the funds. The guidelines do not specify minimum expectations of service providers in assessing, prioritising or approving applications which has led to inconsistent practices and raises the risk of inequitable access for carers. Figure 2D outlines a number of oversight and equity issues evident in these brokerage funds.

Brokerage funds are not available through the Disability Services division. However, flexible support packages may indirectly support families and carers with discretionary funds to purchase supports aimed at the person with a disability.

Kinship carers can access Placement Support Grants. While they are not aimed towards supporting the carer specifically they can provide financial support through the purchase of goods or services, such as bedding or therapy, to meet immediate needs of the child in the placement. It is not possible to determine the extent to which kinship carers derive benefit from these grants as reporting and acquittal does not categorise the type of placement, either kinship or foster, that funds go to.

Figure 2D

Oversight and equity of carer support brokerage funds

Source: Victorian Auditor-General’s Office.

2.6 Timeliness of access and wait time data

Carer supports are often intended to ‘fill a gap’ or meet an urgent need while waiting for other, more long-term supports, such as an ongoing funding package in aged care or disability. Responsiveness, on these occasions, is crucial to the effectiveness of the program.

The departments do not set timeliness targets and do not require reporting of wait times for carer supports, except for case management provided by the Disability Services division. Service providers do not consistently, or routinely, collect data on wait times.

A number of service providers report that they do not maintain wait lists. They state that they prefer to refer people to other services if they do not have capacity to respond, rather than keeping someone holding on for an extended period of time.

The two disability respite providers consulted monitor their unmet demand: one for internal purposes, the other voluntarily reports it to their regional departmental office. The annual disability carer respite satisfaction survey found that carers offered alternative respite options, such as in-home respite or holiday programs, report low satisfaction due in part to long wait times.

Aged care SCP respite providers do not maintain a wait list and they report they are generally able to meet demand.

2.6.1 Wait times and wait time data

For time-critical services, such as respite, financial support or counselling, a long or indefinite waiting period can have a profoundly negative effect on a carer’s health and wellbeing and ultimately their ability to continue in their role. Wait time data is one indication of the service system’s ability to cope with demand, and can provide useful information to departments and service providers for service planning and development work.

Formal wait time data is not available for carer supports, except for disability case management, as the departments and service providers do not routinely collect it. Departmental wait time data for disability case management shows a statewide average of 51.4 days, or just over seven weeks. The target wait time is 50 days. The data also shows a high degree of variation between departmental regions, from just under one week in one region to over 12 weeks in another.

Figure 2E outlines the anecdotal wait times reported by consulted service providers. It shows variable wait times depending on the type of support, for example access to brokerage funds usually occurs within two weeks while case management or respite can be over a month. Variability within program areas is also evident, such as case management for kinship carers. This makes it difficult for carers to have any expectations of how long they can expect to wait for a support.

Figure 2E

Anecdotal wait times

(a) SCP service providers only.

(b) Types of supports not available to carers through these programs.

Source: Victorian Auditor-General’s Office.

Carers’ experiences of waiting

The experiences of carers echo the variability that service providers report. Comments from carers participating in our focus groups indicate that wait times vary depending on the condition of the person they are caring for and the type of support they are accessing. For carers of a person with a mental illness access to supports can be quick, ‘but only if you are in crisis’. Kinship carers found that regular carer reimbursements can be established promptly but that the process for accessing reimbursements for one-off expenses is long and burdensome.

Carers participating in our aged care and disability focus groups reported extended periods of waiting—from a couple of months to over a year—for approval to access supports such as planned respite and case management, and then additional periods of waiting prior to receiving those supports. Their comments also indicated a lack of understanding of the reasons behind the long wait times. This suggests that the departments and their funded service providers are not adequately communicating with carers. This uncertainty adds to feelings of helplessness and increases carer stress.

Recommendations

That the Department of Health and the Department of Human Services:

1. identify and address gaps in promotion of carer supports to improve carer awareness of services
2. require consistent carer identification and needs assessment
3. improve administration and monitoring of carer brokerage funds
4. monitor and report on timeliness of access to carer supports.

3.1 Introduction

Given our community’s reliance on carers, supporting them to maintain their care role is crucial. As well as identifying individual carers and providing supports to them, recognition of carers as a group is also important. Not all carers will require or want direct supports. However, recognition of their role contributes to more effective and sustainable care relationships. This includes involving carers in care and treatment planning with the person they care for.

The programs designed to support carers must be evidence-based and effective. The objectives of carer support programs range from increasing social connectedness to reducing carer stress. Standardised outcome measures—comparing, for example, carer wellbeing before and after provision of supports—can be used to demonstrate effectiveness of supports against these objectives.

3.2 Conclusion

The Department of Health (DH) and the Department of Human Services (DHS) and their funded service providers recognise carers in many ways, from including them in policy and service development, to promoting policies and guidelines for carer involvement in client planning and service delivery. Quality assurance processes provide independent assurance of how service providers involve carers.

Carers in focus groups conducted for the audit, report varied experiences of recognition by service providers. This indicates the need for ongoing effort to embed a culture of carer recognition in service provision.

The departments developed the current suite of carer support programs following extensive carer consultation and using a comprehensive evidence base, consisting of academic research and program evaluation.

Given the vital need for, and benefits from, supporting carers, the departments’ carer support programs are core activity and they should monitor them accordingly. However, the effectiveness of carer support programs is unknown as the departments do not apply or monitor carer-related outcome measures.

Due to the lack of effectiveness data, understanding performance relies strongly on anecdotal feedback from carers and service providers and one-off, narrowly scoped evaluations which present mixed results. A common finding of these evaluations is the need to develop outcome measures.

3.3 Carer recognition

Community, health and other care services can recognise carers by acknowledging their role, the special knowledge they have of the person they are caring for and the contribution they make to the broader community.

The departments and their funded service providers are effective in recognising carers by involving them in policy and program development activities. However, recognition at the service provision level, by involving them in care planning and decision-making, requires continued effort.

3.3.1 Carer recognition policy

There is clear departmental policy guidance to program areas and their funded service providers that they must recognise and respect the relationship between a carer and the person being cared for in their service delivery. Stakeholders and departmental program staff are familiar with the recognition principles contained in the 2006 policy Recognising and Supporting Care Relationships and the 2010 Victorian charter supporting people in care relationships.

Departments and service providers have demonstrated a commitment to realising this policy. At a strategic level, departments involve carers in program and policy development. At the level of service provision, service providers involve carers in care planning and service development.

Carer involvement in policy development

All program areas have effectively consulted with, and involved carers in, policy development. Methods for involving carers included written submissions, surveys, focus groups, one-to-one interviews and membership of committees and working groups. Figure 3A lists examples of carer involvement in policy development.

Figure 3A Examples of carer involvement in policy development

Source: Victorian Auditor-General’s Office.

In late 2011, representatives from the ageing and aged care, mental health and disability program areas and the Children, Youth and Families division in DH and DHS started to meet informally and have started the process of establishing a formal ‘Carers Steering Committee’. The purpose of the group is to provide advice and guidance on the implementation of carer-related policy and initiatives within DH and DHS and across government. This group resembles an earlier ‘Carers Victoria Liaison Group’, maintained by the former DHS. Membership of this group included Carers Victoria. The liaison group has been in recess since the split of DHS, creating DHS and DH, in August 2009. To date, membership of the newly established steering committee has not included Carers Victoria. However, the terms of reference lists Carers Victoria among its stakeholders.

Carer involvement in service provision

At a practical level, service providers can demonstrate the extent to which they recognise carers by identifying and involving them in the provision of care and service development. All audited program areas have state or national standards and monitoring regimes that include minimum requirements for carer recognition. Figure 3B summarises the range of carer-related quality assurance standards and monitoring processes in place across the five program areas.

Figure 3B

Monitoring of carer involvement in service provision

Source: Victorian Auditor-General’s Office.

The extent of carer involvement required by the standards and the rigour of the monitoring regimes varies across the five audited program areas. All program areas, except palliative care, require external accreditation and independent monitoring against the relevant standards at least every three years. Palliative care monitoring is voluntary and done through self-assessment.

Only the standards in aged care and palliative care explicitly require an assessment of carer needs. Standards in disability and child protection require service providers to demonstrate how they ‘build carer capacity’ This could include actions similar to those articulated in the standards for the other program areas, such as provision of relevant information or access to relevant supports. However, the variation in standards could result in carers’ experiencing an inconsistent degree of recognition.

3.3.2 Carers’ experience of recognition

Carers experience recognition to varying degrees depending on their age and the diagnosis or condition of the person they care for. A number of carers felt that the quality of recognition was as a result of the work practices of individuals rather than a consistent systemic approach. Themes on recognition from our carer focus groups include:

• Carers in the mental health focus group reported that they felt more recognised in Area Mental Health Services (AMHS) than in Psychiatric Disability Rehabilitation and Support Services (PDRSS). This may be as a result of the greater investment in, and scrutiny of, carer recognition in AMHS than in PDRSS. Some carers also noted the level of recognition had been improving over time.
• Carers in the disability focus group felt service providers do not recognise their needs as individuals. One carer in the disability focus group felt that she experienced a much greater level of recognition from service providers as the carer for her elderly mother than the carer of her son who has a disability.
• Feedback from stakeholders indicates that kinship carers feel taken for granted by the child protection system. Participants in a kinship carer focus group reported inconsistent engagement and advice from DHS staff, citing staff turnover and the resulting lack of continuity as contributing to this.
• Worryingly, young carers participating in our focus group related experiences of hospital staff, teachers and CentreLink workers not believing their descriptions of the care responsibilities they maintain.

3.4 Effectiveness of supports

Carer support programs should have clearly stated objectives, be evidence-based and draw on carer input in their design. To determine whether programs are effectively meeting their objectives, the departments and service providers need to use outcome measures to assess performance, such as before and after indicators of carer wellbeing.

The current suite of carer support programs has developed from a sound evidence base comprising a combination of research, evaluation and carer involvement. However, the extent to which the programs meet their objectives cannot be clearly determined as there is no consistent use of outcome measures.

3.4.1 Evidence base for supports

Research and evaluation

Each program area was able to provide examples of academic research and pilot program testing and evaluation that had informed the development or improvement of carer supports.

The former DHS established many of the current carer support programs in 1996 as a suite of supports known as the Support for Carers Program. The Victorian Government funded academic research to inform the development of this program, which provided the first profile of Victorian carers.

Carer involvement

Departmental practices demonstrate a strong commitment to genuine carer involvement in program development and improvement. Common consultation methods include surveys, focus groups and interviews, with subsequent reports identifying the major themes arising from the consultations. For example:

• Carer focus groups informed the Disability Services division’s development of a set of principles to guide the allocation of funds for ‘Innovative Respite’ programs, newly funded in 2011–12.
• Consultation with kinship carers influenced the design of the Victorian Kinship Care Model.

The ageing and aged care, and mental health program areas in DH, and child protection in DHS also maintain a range of committee and working group structures that include carer membership or representation.

Figure 3C describes a pilot project, supported by the mental health program area, of an innovative service development and improvement model called Mental Health Experience Co-design, or MH ECO. A key feature of the model is the active involvement of carers and consumers. Services involved in the project pilot reported sustainable changes to their services and practices because of their participation in the program.

Figure 3C

Mental Health Experience Co-design project

Source: Victorian Auditor-General’s Office.

3.4.2 Monitoring and evaluation

A comprehensive performance monitoring framework includes routine monitoring of activity and outcomes combined with regular evaluations addressing the objectives of the program.

Routine monitoring

Departmental monitoring of funded service providers focuses on activity. All program areas collect data relating to activity, for example hours, episodes, applications, and some carer demographic data. However, activity monitoring across programs is inconsistent. For example, respite activity within aged care and disability is measured either by time (hours, days), or episodes of service. This makes it difficult to compare activity levels with funding to assess efficiencies either between service providers or across programs. However from 2012–13 disability services will report respite provision in hours. Figure 3D outlines reporting requirements across a number of carer supports.

Figure 3D

Reporting requirements for carer supports

(a) ‘Other’ includes qualitative reporting, such as case studies or satisfaction surveys.

(b) Dementia carer support is a sub-activity of the Support for Carers Program.

Source: Victorian Auditor-General’s Office.

The ageing and aged care, and palliative care program areas in DH and the Disability Services division in DHS collect some qualitative feedback, either through manual reporting templates or annual surveys. However, this is based on subjective assessments of service providers or service users. Figure 3E provides cases studies of the qualitative monitoring practices in these programs.

Figure 3E

Qualitative monitoring practices

Source: Victorian Auditor-General’s Office.

Monitoring outcomes

The departments have demonstrated work on the development of outcome measures for clients receiving mental health or disability services, but none for those receiving carer supports. The ageing and aged care and child protection program areas have not developed any outcome measures. The Disability Services division has conducted a consultation workshop to develop a set of outcome measures for the recently funded ‘innovative respite’ program. The division is proposing to base the measures on the objectives of the program, which include supporting family and care relationships.

The palliative care program advocates the voluntary participation of service providers in the national Palliative Care Outcomes Collective (PCOC) which includes a carer related indicator. Figure 3F provides a case study of PCOC. This model is an example of how a patient-centred monitoring system has incorporated carer outcomes to provide an overall indication of care efficacy and quality.

Figure 3F

Palliative Care Outcomes Collaborative

Source: Victorian Auditor-General’s Office.

Consultation with 12 funded service providers revealed evidence of only three services, one each in palliative care, mental health and disability, using outcome measures at the service provision level.

The mental health provider uses two standardised tools to monitor carer stress levels before and after accessing counselling or their carer capacity building program. A formal evaluation of the capacity building program found that carer stress levels based on the ‘Involvement Evaluation Questionnaire’ were reduced following their participation in the program. However, the service provider used this tool during the evaluation period only and subsequently discontinued its use.

The disability service provider develops ‘SMART’ goals (Specific, Measurable Attainable, Relevant, Timely) with carers using a tool developed in-house. A service provider staff member and the carer revisit these goals at the end of a period of service provision to see whether the support has helped the carer reach their stated goals.

One-off evaluations

Most program areas have completed one-off evaluations of most of their carer support programs. The exceptions are child protection which commenced a kinship carer support program in 2010, and palliative care. These evaluations provide only limited assurances of program effectiveness as they either did not address the objectives of the program, or appropriate data was not available. A consistent theme identified in these evaluations is the need to develop carer-related outcome measures to determine program effectiveness.

Figure 3G shows that most program evaluations have not addressed the objectives of the program.

Figure 3G

Carer support program objectives and evaluation comparison

(a) The 2001 Support for Carer Program evaluation applied to support programs across ageing and aged care, mental health and disability program areas.

Source: Victorian Auditor-General’s Office.

DH has not evaluated the Psychiatric Disability and Rehabilitation Support Service carer supports, but has recently scheduled evaluations for this service.

Recommendation

1. That the Department of Health and the Department of Human Services develop outcome measures for carer supports and monitor outcomes.