Submission 118 — Mind Australia (Attachment 1) — The provision of services under the NDIS for people with psychosocial disabilities related to a mental health condition | External submission

The economic value of informal mental health caring in Australia: summary report

Commissioned by Mind Australia

Summary report March 2017

Sandra Diminic1,2, Emily Hielscher1,2, Yong Yi Lee1,2, Meredith Harris1,2, Jaclyn Schess1, Jan

Kealton3, Harvey Whiteford1,2

Policy & Epidemiology Group, Queensland Centre for Mental Health Research.
School of Public Health, The University of Queensland.
Carer consultant.

Overview

Mental illness is common and is a leading cause Mind Australia commissioned the University of of disability burden in Australia [1] – in 2007 it Queensland (UQ) research team to: was estimated that mental illness affects 20%

profile Australian mental health carers of Australian adults aged 16–85 every year [2]. However, there are acknowledged gaps in 2. provide an estimate of the value of informal available services for people with mental illness mental health care (replacement cost) which result in them not always receiving timely support of the type and quantity needed [5]. 3. estimate bed-based service replacement costs Therefore informal carers, such as a family member or friend, play a significant role in the 4. review current government spending on care of people with mental illness in Australia, carers. providing a substantial number of hours of This information was required to quantify the unpaid support. In the absence of this informal input of carers into the mental health system, care, the overall functioning and quality of life of and to describe the support needs of carers to people with mental illness who currently have a ensure that they can continue to perform their carer would be poorer. Their care needs would valuable caring roles. either go unmet or would need to be picked up by the formal health and social care systems, at additional cost to government.

Recent reports have estimated the overall value of caring in Australia for carers of individuals with all types of disorders or disabilities [6–8]. The replacement cost of this care was estimated to be $60.3 billion, which highlights the size of the informal care sector [8]. Until now, there has been no published attempt to establish the value of the care delivered by mental health carers each year, in terms of the unpaid hours of support provided to people with mental illness.

Diminic S, Hielscher E, Lee YY, Harris M, Schess J, Kealton J & Whiteford H. The economic value of informal mental health caring in Australia: summary report. Brisbane: The University of Queensland; 2016.

1 | Overview

Summary of methods

Target population Note. The following conditions were considered out of scope for our definition of mental For the purpose of this report, we focused our illness where they are the care recipient’s analyses as closely as possible on the following main condition: autism spectrum disorders, definition: intellectual disability, substance use disorders or neurological disorders (including dementia, A mental health carer is a person who stroke and epilepsy). provides regular and sustained informal care to a care recipient whose main health Data sources condition is a mental illness, where the care recipient is aged 16 years or over. The research team conducted an economic modelling exercise and analyses using data from a range of sources (Box 1). These data sources Carers may be of any age, may be a family provided estimates of the number of mental member, friend or neighbour of the care health carers in Australia, weekly hours of care recipient and do not necessarily live with the provided, caring tasks typically performed and person they care for. In-scope mental illness hourly costs of mental health support workers, diagnoses included: which were direct inputs into the replacement

major depression cost model. Other sources provided data on the impact of carers on bed-based service use and
bipolar disorder expenditure on carer support services.
anxiety disorders
schizophrenia and other psychotic disorders
personality disorders
eating disorders
behavioural disorders. Summary of methods | 2

Box 1 – Data sources

Reviews of published literature on the characteristics of Australian mental health carers, length of hospital stay for people with carers and carers’ service use and unmet needs.
Two national household surveys – the Survey of Disability, Ageing and Carers (SDAC) 2012 [9] and the National Survey of Mental Health and Wellbeing (NSMHWB) 2007 [10].
A new online survey of carers – the UQ Carer Survey 2016 (see below).
National award wage rates from the Social, Community, Home Care and Disability Services (SCHADS) award [11].
A national survey of people with psychosis – the Survey of High Impact Psychosis 2010 [12].
Key informant interviews with clinicians familiar with the operation of bed-based mental health services.
Published data on funding of income support payments and support services for carers. UQ Carer Survey 2016 Note. This is a hypothetical scenario. The intention is never for government to completely The UQ Carer Survey 2016 was a convenience replace the care provided by mental health sample survey of Australian adults caring carers. Rather, a replacement cost analysis for someone aged 16 years or older whose is a method used to quantify the economic main condition is mental illness. The survey value of informal care, and in turn highlight the was purpose designed by the research team importance of carers. to fill gaps in previous national surveys, and particularly to elicit additional detail on the To calculate the annual replacement cost for mental health caring role (hours of care by mental health carers in Australia for the year caring task). The survey was administered 2015, we required estimates of: online to 107 carers in April 2016. Participants were recruited from state and territory carer 1. the total number of mental health carers in networks and organisations. Australia

the total hours of care provided by each Replacement cost model mental health carer in a year One of the main aims of the project was to estimate the replacement cost of informal 3. the cost per hour to replace this care with mental health care in Australia. formal services
cost offsets for the estimated current annual The replacement cost approach to valuing government expenditure on mental health informal caring assumes that, in the absence carers that might not be required if all of a carer, the care recipient would need informal care was replaced with paid formal to receive equivalent levels of support care. from formal mental health or other support services, paid for by the relevant level of These inputs were obtained by combining data government. This approach therefore values from the sources in Box 1. caring by estimating how much this informal care would cost if delivered by government funded services instead of unpaid family and friends.

3 | Summary of methods

Key findings

An estimated 240,000 Australians care A primary carer is the person who provides for an adult with mental illness the most informal assistance to the person In June 2015, there were an estimated 2.8 with mental illness, whereas a secondary million informal carers in Australia, of whom carer shares or assists with informal care 240,000, or 8.6%, were mental health carers duties. Primary carers are not limited by meeting our definition (Figure 1). This group their age, their relationship to the care comprised 54,000 primary carers and 186,000 recipient or whether they live with or apart other mental health carers. from that person. However, for this project ‘primary carers’ were restricted to the narrow definition used in the SDAC 2012, that being: required to be confirmed primary carers aged 15 years or more, to reside with their main recipient of care and for their main recipient of care to meet our definition of mental illness.

‘Other carers’ thus includes people who are secondary carers only, as well as all carers aged below 15 years, primary carers who do not live with their recipient of care and primary carers to a secondary care recipient with mental illness (where their main care recipient has a different condition). Thus our estimate of primary carers is conservative.

Figure 1. Estimated number of mental health carers, Australia 2015

Key findings | 4

Box 2 describes some key characteristics of the caring role for mental health carers.

Box 2 – Caring role of mental health carers, SDAC 2012

The majority (99%) of carers provided support to one person with mental illness but 21.7% also cared for at least one other person with another disability type.
The care recipient was most commonly their spouse/partner (45.8%) or child (31.8%).
49.1% of primary carers had been caring for ten or more years. Key characteristics of mental health carers and their care recipients are shown in Boxes 3 and 4.

Box 3 – Key mental health carer demographics, SDAC 2012

The majority of mental health carers were female (54.4%), of working age (72.8%), married (53.5%) and living in a capital city (61.2%).
14.7% were young carers below 25 years of age.
More than three-quarters (76.8%) were born in Australia, and the vast majority (92.5%) spoke English at home.
A substantial proportion (38.4%) of carers were not in the labour force.
Primary carers had lower levels of educational attainment and employment than the broader carer group.

Box 4 – Key care recipient demographics, SDAC 2012

Just over half (51.6%) were female, 64.8% were of working age and 59.7% lived in a capital city.
25.3% were young people aged 15–24 years.
Most (80.3%) were born in Australia and only 6.8% spoke a language other than English at home.
The most frequently reported main disabling conditions were depression (37.4%) and anxiety disorders (18.8%).
Most care recipients had comorbid conditions (85.3%); the most common were substance use* and physical health problems.
Not collected in the SDAC 2012; data from the UQ Carer Survey 2016 5 | Key findings

Previous estimates of the number of mental Islander or culturally and linguistically diverse health carers in Australia have varied widely. backgrounds. The survey methods are also likely Our profile of carers was drawn from multiple to have produced a conservative estimate of surveys, and in particular relied on the SDAC the proportion of carers who identify as primary 2012, a nationally representative household carers due to the way data were collected (see survey. We were able to count and describe not definition of ‘other carers’ on page 4). just primary carers, but the wider population of people caring for someone with a mental illness. 2. Mental health carers provide large This profile of mental health carers therefore amounts of unpaid support, often on a improves upon previous smaller studies, which fluctuating basis focus only on primary carers or those accessing Primary carers generally provide more support carer services. than other carers, and this was reflected in our analysis. Almost 40% of primary mental health While we used nationally representative carers provided 40 or more hours of care per household surveys where available, these week on average, and a similar proportion fewer surveys sometimes miss groups of ‘hidden than 20 hours per week. When compared with carers’, who do not identify themselves as a a small sample of possible, but not confirmed, carer, may not engage with surveys and may primary mental health carers, confirmed primary not be in contact with carer services. This may carers provided more weekly hours of care have been particularly the case for mental (Figure 2). health carers from Aboriginal and Torres Strait

Figure 2. Average caring hours for confirmed (n=150) vs. other possible (n=87) primary mental health carers, SDAC 2012

Key findings | 6

The UQ Carer Survey 2016 provided more For all mental health carers, these hours of detailed estimates of hours of care and caring care are equivalent to 173,198 full-time tasks for a similar population of mental health equivalent (FTE) formal support workers, carers as the SDAC 2012. Data on hours of assuming that each worker provides 1,201 care from the UQ Carer Survey 2016 were hours of direct consumer service delivery time grouped into the same time categories as per year. In comparison, the whole national used in the SDAC 2012, and were used to mental health non-government organisation calculate a weighted average hours of care. On workforce was estimated to comprise between average, primary mental health carers provided 14,739 and 26,494 paid employees, or more 36.2 hours of support per week to their care than 12,000 FTE employees, in 2010 [3, 4]. recipients.

In addition to the time devoted to direct caring Combining average weekly hours of care with tasks each week, carers also reported being data on the number of primary carers, we ‘on call’ or ‘on standby’ in close proximity to estimated that primary mental health carers their care recipient so that they can be available in Australia provided a total of 102 million quickly if needed (e.g., in a crisis). The majority annual hours of care to their carer recipients of UQ Carer Survey 2016 carers reported in 2015 (95% UI: 81.6–125.1 million). providing this standby time, estimated at an additional 59.5 hours per carer per week. Since Using data from the NSMHWB 2007 sample, the carer is ‘on call’, they cannot make plans which covered a much wider array of mental for other activities such as meeting friends, health carers, we estimated that other carers working, engaging in hobbies or travelling. provide on average 11.0 hours of support per This indirect standby time was not costed week. The distribution of weekly hours of care in our model due to difficulties in accurately was skewed, with most carers reporting very calculating an appropriate replacement value few hours of caring per week. for each hour of carer standby time. A single formal-sector crisis team or emergency We estimated that other mental health carers department worker would be on standby to provided 106 million annual hours of care provide care to potentially hundreds of possible to their carer recipients in 2015 (95% UI: clients, compared with a one-to-one informal 88.8–125.5 million). carer and recipient standby relationship. The ambiguities of deriving a precise replacement Interpretation and key considerations value for each hour of standby time prevented Our estimates of average weekly hours of us from valuing this parameter in our model. care are smaller than those identified in However, standby time has a significant impact previously published studies. This may be due to on carers’ day-to-day lives, even when they are differences in our definition of a mental health not actively engaged in specific caring tasks. In carer, which excluded cognitive and behavioural future, better availability or targeting of crisis conditions often included in other studies. Past support services for people with mental illness, samples recruited through carer organisations and support and coping strategies for carers, are also likely to have captured carers with might help to alleviate some of the burden of higher needs who may have been caring for a standby time for mental health carers. longer duration, and for more hours per week. Qualitative feedback provided in the UQ Carer Survey 2016 indicated that, due to the fluctuating and episodic nature of mental illness, many carers had trouble estimating average hours of weekly care. These hours tend to vary from week to week and month to

7 | Key findings

month, depending on how well the person with All carers in the UQ Carer Survey 2016 provided mental illness is, with unexpected crisis periods assistance to their care recipient with emotional requiring more intensive support. Therefore our support and psychosocial care, and 98.1% data provide an indicative snapshot of caring assisted with practical tasks. Assistance with hours. ADL was provided by 61.7% of mental health carers. On average, mental health carers spent

Most of mental health carers’ time is most of their care time providing emotional spent on emotional support support and psychosocial care (Figure 3). Assistance with ADL accounted for only a Mental health caring tasks were grouped into very small proportion of mental health carers’ three categories, consistent with previous support time. studies: Figure 3. Proportion of total mental health Emotional support and psychosocial care, carers’ caring time devoted to different including: types of caring tasks, UQ Carer Survey 2016
emotional support and encouragement (emotional support and companionship, encouraging and motivating)
supervising and monitoring (encouraging or prompting to do things, keeping the care recipient occupied, supervising to prevent wandering/damage)
responding to behaviour (managing crises, managing inappropriate behaviours).

Assistance with practical tasks, including:

household tasks (grocery shopping, preparing meals, housework, property A breakdown of tasks within each category maintenance) is provided in Figure 4. The most frequently reported caring tasks within the emotional
health care coordination (supervision/ support and psychosocial care category prompting taking of medication, arranging were emotional support and encouragement, outside services, liaising with health supervising and monitoring and responding to professionals, assisting with treatment behaviour; health care coordination was the plan) most frequently reported caring task within the practical tasks category. Average caring time 3. literacy and communication (managing was split across multiple types of tasks, with the finances, other paperwork, reading and most hours devoted to emotional support and writing, communication) encouragement, supervising and monitoring,
transport, e.g., assistance with getting to household tasks and other emotional support appointments/workplace. tasks.

Assistance with activities of daily living (ADL), including personal hygiene/grooming, bathing, dressing, eating and mobility.

Key findings | 8

Figure 4. Proportion of carers and care time for subtypes of care tasks, UQ Carer Survey 2016

Mental health caring differs from other Including all primary and other carers, mental types of caring health carers were significantly less likely than carers of people with other disability types to We compared the caring role reported by assist their care recipient with practical and mental health carers with that of carers of ADL tasks (Figure 5). Mental health carers adults with other types of disabilities. These were also significantly more likely than physical were grouped into other cognitive/behavioural health carers to provide emotional support to conditions (autism spectrum disorders, their care recipient. This is consistent with the intellectual disability, other developmental symptoms and needs of people with mental disorders, dementia and acquired brain injury) illness compared with other types of conditions. and physical conditions.

Primary mental health carers were significantly more likely than primary carers of people with other cognitive/behavioural conditions to provide episodic rather than continuous care.

9 | Key findings

Figure 5. Proportion of all carers of people aged 15+ years performing different types of caring tasks, grouped by care recipient’s main condition, SDAC 2012

The distribution of average weekly hours of care hours caring per week (Figure 6). Note that was similar for primary mental health carers hours spent caring are likely to vary, depending and primary carers of people with a physical on the availability of formal support services, condition, but compared with primary carers and these may differ by the care recipient’s type of people with other cognitive/behavioural of condition. Figure 6 does not include standby conditions, primary mental health carers were time, data for which were only available for significantly less likely to spend 40 or more mental health carers.

Figure 6. Average caring hours for primary carers of people aged 15+ years, grouped by care recipient’s main condition, SDAC 2012

Key findings | 10

It would cost $13.2 billion to replace care. Caring tasks not typically performed by informal mental health care with formal PHaMs workers, including crisis support and support services assistance with activities of daily living (feeding, dressing and so on), were costed as a crisis As explained on page 3, one of the key aims of accommodation worker or disability support this project was estimating the economic value worker, respectively. of informal mental health care via a replacement cost valuation. The main steps for calculating Support workers were costed using a base the annual replacement cost for mental health wage from the SCHADS award, with additional carers in Australia are outlined in Figure 7. workforce parameters sourced from the

National Mental Health Service Planning

Detail on costing methods Framework (NMHSPF) [13]. These calculations A Personal Helpers and Mentors (PHaMs) or produced a total cost per FTE staff member, equivalent support worker was deemed to including overhead costs, and a cost per be the most closely related formal support support hour (Table 1). service to informal caring, and therefore was used to determine the hourly formal service cost to ‘replace’ informal mental health

Table 1. Workforce parameters for support workers

Salary on-costs 23% Organisational overheads 20% Working hours per week (A) 38 hours Working weeks per year (B) 45.14 weeks (52.14 – seven weeks leave) Consumer-attributable service delivery time (C) 70% of working hours Annual hours of consumer time per FTE (A × B × C) 1,201 hours

The cost offset was the estimated government This income support was subtracted from the expenditure on Centrelink income support for final replacement cost model. Expenditure on mental health carers in 2015. This included: other carer support services such as respite care and counselling was not included in the

Carer Payment cost offset as many of these services would
Carer Allowance still be required for families, even under a total replacement scenario.
Carer Supplement
Rent Assistance for carers receiving Carer Payment.

11 | Key findings

Figure 7. Schematic overview of replacement cost model

Key findings | 12

may not have any consistent effect one way or Overall, the total annual replacement cost for the other. The impact, if any, of a carer is likely all informal mental health carers in 2015 was to depend on how engaged the carer is with the $14.3 billion. After adjusting for $1.1 billion care recipient’s treatment, how well the carer is offset in Centrelink payments, this figure was coping and the carer-care recipient relationship. $13.2 billion. This is how much it would cost Therefore we did not model a difference in governments to replace all of the caring tasks hospital costs for people with and without a currently provided by mental health carers carer. with formal mental health support services, such as PHaMs or disability support workers. In comparison with previous estimates of the replacement value of all informal care in Interpretation and key considerations Australia ($60.3 billion) [8], our estimated replacement cost for mental health informal To put this in context, the total replacement care is higher. Our modelling approach was able value of $13.2 billion is equivalent to 1.7 times to refine replacement cost methods for informal the current national expenditure on all mental mental health care in Australia to produce what health-related services in Australia, including we believe is a more reliable estimate. hospital, clinical outpatient and psychosocial support services. Total national expenditure on these services was estimated to be $8.0 billion 6. Conservatively, $1.2 billion is currently in 2013–14 [14]. These figures highlight the spent on support for mental health carers significant value provided by carers, in terms of In contrast to the substantial economic providing support for people with mental illness. value of informal mental health care ($13.2 billion), estimated government expenditure Carers have previously reported their family on mental health carers is relatively modest. members being discharged early from hospital We conservatively estimated that government where there is a stable home and carer expenditure on mental health carer services available to support the person with mental was approximately $1.2 billion in 2015. This illness. If early discharge is associated with includes $1.1 billion in Commonwealth-funded having a carer, this would be a cost saving income support payments, $69 million in other to government from caring and should be Commonwealth-funded services and between considered in the replacement cost model. To $10 million and $46 million in state- and explore this, we combined a literature review territory-funded services (Figure 8). These other with analysis of the SHIP 2010 survey and key Commonwealth- and state-funded support informant interviews. The data indicated that services include, e.g., respite care, information, having a carer does not reduce the length of counselling and practical assistance. stay in bed-based mental health services, and

13 | Key findings

Figure 8. Government expenditure on mental health carer services

Note. These estimates are conservative A concerning 35.0% of primary mental because we were unable to locate expenditure health carers did not know what data for some programs, and excluded some services were available for carers. A broader consumer and carer programs that small proportion had not heard of the Carer might benefit mental health carers because no Payment and therefore had not explored their specific expenditure data were available on the eligibility. portion directly linked to mental health carers. Around half of primary mental health

Not all mental health carers are accessing carers reported unmet support needs. support services or feel their needs are addressed Key issues with carer support services noted by The SDAC 2012 indicated that the majority of carers across the SDAC 2012, UQ Carer Survey primary mental health carers were not receiving 2016 and the literature are noted in Box 5. any support, with only 23.8% receiving Carer Payment and 34.4% receiving assistance to care for their main recipient of care. More detailed data from the UQ Carer Survey 2016 participants showed that 43.4% of mental health carers did not receive any form of Centrelink support.

Key findings | 14

Box 5 – Key issues with mental health carer support services

A lack of information about mental illness and carer support services.
The need for more assistance, such as respite care and emotional support.
Available services do not always meet the episodic caring needs of mental health carers.
Gaps in mental health services for care recipients place additional burden on carers.
Poor recognition of carers and exclusion by mental health professionals from treatment and discharge planning and discussions about recovery.
Difficulties accessing sufficient financial support. This report highlights a need for better responses were that “… there is nowhere near disseminating information about support enough support for mental health carers” and services to mental health carers. Carers report that carers are “…tired of filling in the gap of the needing more appropriate and flexible support shortfall in services”. services to match their unique caring profile and Another recurring theme from carers was that the episodic and unpredictable nature of mental inadequacies in the mental health treatment illness. Services originally developed for carers and support system for their care recipients of people with other types of disabilities may increased the burden of informal care. Any not be directly suitable or transferable to the strategies to increase support for carers should needs of mental health carers. also consider the benefits that may accrue for Other carer needs carers in improving services available to people with mental illness. Qualitative data from the UQ Carer Survey 2016 expanded upon a number of the issues Prioritising provision of carer support services in Box 5, as well as poor carer mental and would do much to ensure that mental health physical wellbeing, feelings of hopelessness carers can continue to perform their role and exhaustion and carers changing many without significant financial disadvantage and aspects of their lives to accommodate the care psychosocial distress. It would also do much to recipient, including their careers, finances and address some of their identified unmet needs. housing. The take-home messages from these

15 | Key findings

Implications

This work provides the first known estimate of mental health system, and that improvements the economic value of informal mental health to services for people with mental illness and care in Australia. The results of this study their carers are warranted. A summary of the show that informal mental health carers add key findings is shown in Box 6. significant economic value to the Australian

Box 6 – Key messages

An estimated 240,000 Australians care for an adult with mental illness.
Mental health carers provide large amounts of unpaid support, often on a fluctuating basis.
Most mental health carers’ time is spent on emotional support.
Mental health caring differs from other types of caring.
It would cost $13.2 billion to replace informal mental health care with formal support services.
Conservatively, $1.2 billion is currently spent on support for mental health carers.
Not all mental health carers are accessing support services or feel their needs are being addressed.

This study also highlighted a number of areas where a lack of good-quality data led us to make necessary assumptions. These areas could be improved by further research and data collections (Box 7).

Box 7 – Areas for further research

More detailed data collection on hours of care for a large and representative sample of mental health carers, such as an ABS Time Use Survey or diary methods study, considering the episodic nature of mental health caring.
Routine recording of carer status in bed-based mental health service datasets to allow detailed analysis of large samples on the relationship between caring and service utilisation.
More detailed profiling of young carers below 25 years of age, whose support needs and caring impact are likely to differ from older carers.
Implementation of the Mental Health Non-Government Organisation Establishment National Minimum Dataset to improve available data on mental health carer support service expenditure and access.
Exploration of the financial impact of caring on mental health carers and the opportunity costs, which were outside the scope of this study.

Key findings | 16

A number of reforms in the pipeline (Box 8) will likely have an impact on the mental health caring role, as well as on the availability and suitability of support services for carers and their care recipients. It is too early to comment on the extent of their impact, but it is clear from this report and other publications that mental health carers have a unique caring profile, and that this needs to be considered in the planning process of these reforms. Psychiatrists, mental health organisations and carer support groups have already started to, and will continue to, champion the extensive role of mental health carers during the planning and implementation of these reforms.

Box 8 – Summary of current and future reforms

National Disability Insurance Scheme (NDIS) –– Carers are not participants of the NDIS and will not receive a separate assessment or an individually funded package of supports.

–– One of the core aims of the NDIS is to better support the carer to continue their caring role, which may include training for carers, respite and group or family therapy.

–– Preliminary results indicate some positive outcomes for carers: ability to return to work, reduced stress and less financial pressure.

–– Key issues for mental health carers include uncertainty about the national roll out, anxiety about access to Tier 3 supports and uncertainty surrounding service accessibility if the care recipient is deemed ineligible.

Carer Gateway and integrated carer support service –– Commonwealth Government has committed $33.7 million over the next four years to design and implement an integrated plan for a carer support service.

–– Stage One: implementation of a national Carer Gateway or online resource hub. The Carer Gateway launched in December 2015; however, no evaluation data published to date.

–– Stage Two: designing a new national service (‘integrated carer support service’) that provides better coordinated and more streamlined carer services. A draft concept model was published in May 2016 for public feedback. There is nothing in the draft service concept pertaining specifically to mental health carers.

Review of Carer Payment and Allowance –– The Department of Social Services is currently undertaking a review of the assessment process for the Carer Payment and Allowance.

–– The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has been invited to provide input into this review process.

–– Concerns have been raised about the current assessment process being too heavily geared towards carers of people with a physical disability.

17 | Key findings

References

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References | 18

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