It's About Time - Chapter 8

It's About Time

Chapter 8:

Government Support: Care for adults and support for carers

8.1 Introduction

8.2 The universal nature of care

8.3 Support for carers combining paid work and caring

8.4 Supporting the diverse needs of carers

8.5 Government provision of formal care for older people

8.6 Greater availability of formal care to meet growing need

8.7 Specialist disability services

8.8 Conclusion

8.1 Introduction

At some point in their lives, all Australians will be the receivers of care and the overwhelming majority will also be providers of care. This chapter discusses these care experiences across the life course, with a particular focus on care provided for older people and people with disability.

There is no scope within this report to put forward a comprehensive analysis of service delivery to people with disability and older people requiring care, but clearly these services, like early childhood education and care services, are central to supporting the balance between paid work and family life. The provision of these care and support services is an area in which governments play a key role.

This chapter outlines government support services for carers and discusses the diverse needs of working carers, including those carers with specific needs.1 It also provides an overview of the structure of care services for older people and people with disability in Australia.

Drawing on submissions and HREOC consultations, this chapter is focussed particularly on the needs of carers participating in paid work and the priority changes needed to support a framework based on the principle of shared work - valued care.2

8.2 The universal nature of care

I still think its interesting that we talk in terms of dollar signs ... women are up at 3 am taking care of children, breastfeeding, etc ... the point Im trying to make is that [unpaid] work is very valuable work, but its still not counted. Its nurturing the next generation of Australians, and ... it doesn't have a dollar sign attached.3

As young children we will all be cared for by our parents and/or other formal or informal care providers,4 as we move through our lives we will all experience periods of illness or disability during which we require care and in old age most Australians will require some level of assistance to manage our lives. The vast majority of us will also experience the flip side of this caring, as we care for our own or others children, our parents, our partners and other family members.

For a range of people in the community, it is also likely that they will be simultaneously providing care for others and relying on some form of care and support themselves. For example, close to 40 per cent of primary carers5 report that they have some kind of disability6 and may access services such as personal care themselves while also caring for their children. A teenager may live at home under the care of his mother but provide help to his elderly grandfather. A grandmother might be providing formal substitute care for her grandchildren while also needing community support because of her own health needs. All of this care giving and receiving takes place in the context of varying degrees of labour market participation across the life cycle.

In addition to our identities at various times as informal carers and the recipients of care, many people are employed in the provision of formal care. In the 1999-2000 ABS Community Services Survey, there were approximately 114 000 people employed directly in community service delivery in nursing homes, aged care services and other residential and non-residential care services.7

Formal care services for adults in Australia have moved substantially towards community based care in recent years with the large scale move towards deinstitutionalisation of people with disability and the re-orientation of community care toward assisting older people to remain in their own homes.8 As the "baby boomer" cohort ages the need to facilitate choice and flexibility in aged care provision in place will also increase, particularly given the emerging preferences of this generation.9

All of these care needs and carers need to be supported if the current networks of care are to continue. As noted in one submission to HREOC:

We want our children, the elderly, the sick and disabled to be nurtured. We want to create fair conditions for the people who care for them. If we are to have a better way of life for the future, workplaces must become more humane. In addition we must rethink the economy in order to allocate care-workers a fair share of economic resources in return for their essential contribution to the community and the economy.10

While there is no doubt that the increased recognition of the work carried out by both paid and unpaid carers is timely and appropriate, one of the outcomes has been a policy focus on people requiring care only as a "burden" or "dependent". As the NSW Disability Council has pointed out:

... identification of people with disability as workers and 'carers is important, so as to not reinforce the perception that people with disability are only recipients of care and income support.11

HREOC has undertaken considerable work in this area, particularly in relation to people with disability and the right to employment. The report of the National Inquiry into Employment and Disability, WORKability II, produced a series of recommendations aimed at better enabling people with disability to secure and retain employment.12

As discussed in Chapter 3, human rights law is developing to better address issues such as the needs of older people and the rights of people with disability.

Along with the domestic anti-discrimination laws, Australia has an obligation to prevent and eliminate discrimination in employment that occurs on the basis of age and disability under the ILO Convention (No 111) Concerning Discrimination in respect of Employment and Occupation. In addition to this protection, the Convention on the Rights of Persons with Disabilities,13 which was adopted by the United Nations (UN) General Assembly in December 2006, prohibits all discrimination on the basis of disability.

The United Nations have also adopted a number of non-binding principles which recognise the rights and needs of older people. The UN General Assembly adopted Principles for Older People in 1991 which highlight the importance of the role of the family in providing care for older people14 and in 2002, the UN Second World Assembly on Ageing adopted the Madrid Political Declaration and International Plan of Action on Ageing (MIPAA).15 MIPAA aims to improve the social and economic conditions of older people. Relevantly, it recognises "the crucial importance of families, intergenerational interdependence, solidarity and reciprocity" and "the provision of health care, support and social protection for older persons".

Care services in Australia must be seen within the context of broader community goals that allow all individuals to participate as fully as possible in the economic, social and intellectual life of their community.16 A shared work - valued care approach to care across the life cycle recognises the value of care work, both in a social or cultural sense and in terms of adequate remuneration for formal care. The principle of shared work - valued care encompasses proper remuneration for paid care work and the sharing of the broader costs of informal care by government as well as individuals.17

8.3 Support for carers combining paid work and caring

More than one in eight Australians (2.6 million people) provides informal care to a person who needs assistance due to disability, chronic illness or old age.18 It is estimated that these informal carers provided approximately 1.2 billion hours of care in 2005 at an estimated replacement value of $30.5 billion. Almost half a million of these people are primary carers.

Three quarters of carers are of workforce age. Carers are more likely to be unemployed or not participating in paid work than those who are not carers.19 Fifty six per cent of all carers are employed on a full or part time basis or are looking for work, compared to 68 per cent of non-carers. Primary carers have a significantly lower labour force participation rate at only 39 per cent.20

It is notable that the rate of full time work among primary carers in less than half of the general population at only 19 per cent with non primary carers (37 per cent) also lower than the Australian average of 42 per cent. There is evidence that some carers would return to the workforce but for their caring obligations, with around a third (36 per cent) of primary carers indicating a desire to return to work, particularly part time.21

The Australian Women's Coalition told HREOC it is clear that sandwich generation women (those caring for older and younger family members at the same time) and older women carers are in need of practical, family-based support and care for themselves, and that these needs would best be met via a combination of strategies/initiatives including:

• providing carers with more opportunities to be listened to and acknowledged for their caring roles both within families and outside of their families;
• educating families and communities about the demands of caring and spreading the caring responsibilities and duties more equitably within families;
• building the capacity of families and communities to more adequately and equitably cater for family caring responsibilities;
• providing families with more diverse types of 'time out options (including appropriate community based activities) on a regular (up to daily) basis so that carers can have regular, amounts of 'normal time out;
• providing more domestic help for carers tailored to their particular family needs;
• providing more services to carers where they are based - i.e., in their homes and immediate neighbourhoods and not in 'widespread' or 'distant' community centres;
• increasing the financial assistance made available to carers and increasing the number of services for carers;
• providing greater assistance with transport for family/extended family members being cared for; and
• providing a greater range of appropriate community activities/services that both the person(s) being cared for and the carer(s) are happy for the persons(s) being cared for to attend on a regular basis.22

Support services aimed specifically at carers have increased significantly in recent years. The Australian Government now funds the Commonwealth Carer Resource Centres (which provide advice, counselling and referral for carers) and Commonwealth Carer Respite Centres (which provide carers with information about a range of respite options and assistance to obtain respite). Commonwealth Carelink Centres also provide free information to carers about community, aged care, disability, Home and Community Care (HACC) and other support services.23 The National Respite for Carers Program has resource centres in each capital city which are designed to act as a single point of contact for carers to obtain information and access to relevant services.

These services can help maintain family relationships, provide necessary breaks as well as supporting time together, relieve carer burnout and associated physical and mental health consequences and assist people with illness or disability to have an improved quality of life and better participate in their community.24

While Governments have also developed a range of initiatives in recent times to support working carers of older people and people with disability,25 this is a key area in which further specific research and policy development is required. For example, while the Australian Government has committed up to $65 million to employed carers of older people for respite services over the next four years, Carers Australia has pointed out that support services, particularly respite care, remain a key issue for many families, especially for older carers and sole parents.26

Changes have also been made to the financial assistance provided to carers in recent years through the Carer Payment and Carer Allowance with the aim of assisting carers to better combine paid work and caring. These include extending the number of hours that carers may spend in employment, voluntary work or training from 10 to 25 per week without affecting their Carer Payment and increasing the number of days that carers can spend away from caring up to 63 for recipients of Carer Payment or Allowance.

Carers Australia told HREOC that:

In the 2005-06 federal Budget, the Government announced funding of $95.5 million over four years to enable day respite centres to extend their hours of operation, giving an estimated 5,000 employed carers each access to 480 extra hours of respite per year ... It is a welcome move that will hopefully provide carers with some new options in alternative care. However as it is for respite care and appears to be for a limited number of hours, it would not be expected to be a main source of alternative formal care. Rather, regular permanent arrangements are needed over extended hours.27

The Queensland Government highlighted to HREOC that:

Flexible respite care and information services are required to enable carers to participate in work and family life. The Commonwealth government has a responsibility to provide sufficient support for carers wanting to combine work and family.28

Better support is needed to assist carers to manage their caring responsibilities and in particular to combine paid work and caring.

Some types of care produce present challenges for carers. The community based organisation Palliative Care Australia has stressed that carers of people with a terminal illness often experience difficulties in maintaining employment and are forced to give up work and rely on government assistance.29 Carers in one study indicated the need for strong support for flexibility and understanding in workplaces, including making all sick leave entitlements available as carers leave in such situations.30 This study also highlighted the need for further information to better identify the needs of specific groups of carers.31

Support for working carers is important at the workplace level from both management and colleagues. HREOC was told about a variety of different ways in which workplaces could be more supportive of carers. The Working Carers Support Gateway and Carers Australia submissions commented extensively on this issue:

A number of carers talked about the benefits of formal or informal debriefing, counselling or professional supervision at work. One carer, who worked at a human service organisation where staff had stressful jobs, had access to counselling that was paid for by her employer. As she didn't feel she needed it she was able to trade it in for massages, which were 'a great stress relief. Others felt that they didn't want work troubles to intrude on their already difficult home lives. They made arrangements to debrief on their day at work with colleagues, friends or supervisors so they could leave their work stresses at the front door. If these provisions were available to all staff it would greatly assist working carers.32

There is a range of ways workplaces can be flexible, depend[ing] on the level of care required ... the individual needs of the care situation and the nature of paid work to be done. For example, care for a frail older family member with a degree of independence can be assisted by acceptance of the need for personal monitoring or support phone calls, extended lunch hour to allow meal preparation, carer leave for appointments, reduced working hours or flexitime, or work at home.33

Our working carers are concerned that their current rights, for example to take time off and make it up later, be protected. Other family-friendly provisions that are identified as important include being able to use the telephone at work, take career breaks when leave runs out, and being able to take extra paid leave for carer training and support, not just to provide care (this was particularly the case for a group of Aboriginal working carers). Working carers wanted greater promotion of family-friendly provisions and counselling around their needs so they would not feel pressure to resign because of caring responsibilities.34

8.4 Supporting the diverse needs of carers

While many of the issues that carers identify are common and experienced by many people across the spectrum of Australian families, as with parents with child care responsibilities, some groups of carers experience particular difficulties and challenges. These specific groups identified to HREOC in submissions and consultations include men with caring responsibilities,35 carers with disability, grandparent carers, Indigenous carers, young carers and carers from CALD backgrounds.

Men with caring responsibilities

HREOC was told that:

The prevailing social culture dominates the workplace re-enforcing the 'women as carers, men as bread winners' stereotype further limiting male carers from accessing workplace flexibility provisions.36

A number of studies have identified the issues for male carers as distinct from carers more broadly. Slightly less than half of all carers are men, while men account for slightly less than a third of primary carers.37 If sharing care more equally becomes more of a norm in future, as discussed in Chapter 5 in relation to child care, it is likely that mens share of elder care and care for people with disability will also increase, as will the need for appropriate supports.

Male carers also have a different profile to female carers in relation to their age and the people for whom they are caring. Men are more likely to be the carer of their spouse, less likely to be the carer of a parent or child and tend to be older than women carers.38 About half of male primary carers are not in the labour force, which is partly a result of their of profile, but when they are, they are more likely to be in full time work than female primary carers or to be looking for full time work.39

A number of submissions to HREOC highlighted this need for caring supports for both men and women.

I believe a 'changed mindset' towards ageing and the needs of the aged ought to apply to both men and women and also employers. The stress on a family caring for an aged parent is traumatic, it usually now comes at a time when the family carer is not as active, fit or healthy as they were when younger. Currently it comes at a time when men and women are nearing the end of their working life or looking forward to a relaxed retirement, after they have brought up their own family and finished their working life. Caring can also divide families.40

Crucially, there should be an expectation that caring for children, the aged and infirm, for friends and relatives in times of need, is the responsibility of men and women equally. As long as this responsibility falls primarily to women they are vulnerable to being discriminated against at work, and constrained in their employment choices and opportunities.41

A recent study on male carers conducted by Carers NSW identifies that men have different patterns of caring to women - male carers continue to do more of the traditionally male tasks such as home maintenance, gardening and heavy lifting, with more personal care, assistance and communication carried out by women. It is interesting to note that men report doing as much meal preparation and more housework than women, although the study suggest that this may perhaps be partly explained by women not reporting as caring tasks those activities which they have always carried out in the home. These findings, based on the ABS Survey of Disability, Ageing and Carers, are also reflected in FACSIA data on recipients of Carer Allowance - this payment is available to carers providing high level personal care, is not income tested and only 18 per cent of recipients are men.42

The Carers NSW study found that many of the issues facing men and women carers were the same, such as the impact of caring on physical and mental health, feeling able to cope with changes that have occurred in their lives, having sufficient contact with other people (especially other carers), the usefulness of formal services (in particular carer support services and respite services) and the impact of community attitudes. However, the study also found that a number of men were socially isolated, had inadequate social support, were using destructive coping mechanisms (particularly alcohol) or had poor mental health. Carers groups, particularly ones specifically targeted towards men, were seen as being a very beneficial form of support for male carers.

Submissions to HREOC also backed up many of these findings:

In my experience and discussions with other men I have found there to be pressure exerted upon men who have wished to change their employment arrangements to make them more family friendly. There seems to be some suspicion if you are a man and wish to work part time to balance your other responsibilities.43

The Working Carers Support Gateway argued that carers cannot always access time off during the day to provide care for older relatives. A male carer consulted by the Working Carers Support Gateway noted:

The women in the office get to take time off if they need to. But my boss would have to be fined by an inspector, like for Workcover, before he would give time off to the blokes driving the vans.44

Carers with disability

As noted in previous chapters, people with disability who are also carers, frequently women, face particular difficulties accessing the support they need to undertake combined paid work and care roles.

As highlighted by the Disability Council of NSW, the issues that apply to women as carers:

... clearly also apply to women with disability. However, it is important to acknowledge that the inequities and barriers that exist for women in the workplace are exacerbated for women with disability. This is because the circumstances of women with disability are further complicated when their disability-related needs are not recognized and/or not met.45

Like other carers, the majority of carers with disability are women.46 However, little attention has been paid to the needs of people with disability who are balancing paid employment with family/carer responsibilities, a situation which is compounded by the dearth of data which identifies these needs.

Despite the diversity of people with disability there is a lack of research on people with disability except in relation to welfare, health care and disability support services. In addition, much of the data are not disaggregated in terms of gender, race or other demographic factors.47 This presents a very homogenous and narrow picture of people with disability. The limited amount of gender disaggregated data in relation to disability and work, and the limited amount of disability disaggregated data in relation to women and work makes it difficult to form a comprehensive analysis of, or adequately respond to, the issues and concerns of women with disability.48

The Disability Council of NSW have highlighted to HREOC a number of barriers for women with disability who try to enter paid employment and note that these systemic barriers necessarily impact on the capacity of women with disability to balance paid work and family/carer responsibilities. People with Disability highlighted:

[t]he significant time and energy [involved] in trying to get services, dealing with services and planning for the future for the person with disability leaves little left for undertaking paid work. This is particularly the case for women with disability who may also use more time and energy because of the nature of their impairment or condition.49

The general lack of understanding of disability in society, together with a lack of money, education, transport and access to the built environment combine with insecure housing, lack of confidence and cost of equipment to make employment a fairly remote possibility.50

These issues were considered in detail in HREOCs National Inquiry into Employment and Disability which recommended, among a range of other things, increased funding, improved coordination and streamlined access to personal assistance at home and in the workplace for people with disability participating in all kinds of employment, with a view to ensuring the personal care necessary to meet employment or study obligations.51

People with Disability Australia also highlighted that:

Among people with disability there is a range of diversity in terms of type of impairment or condition, the role or roles assumed in families - parent, breadwinner, carer etc - and the types of families they belong to - sole parent families, step-families, same-sex couple families etc. People with disability are also diverse in their sexuality, gender, religion, age and ethnic, cultural and linguistic background as well as a range of other factors.52

One approach to better supporting both the systemic and the individual needs of people with disability who are balancing paid work and family/carer responsibilities is that suggested by the Disability Council of NSW who stressed to HREOC that the best response that workplaces can take to carers with disability is to establish:

flexible arrangements in the workplace to meet individual needs. Employers must be encouraged to consider flexible arrangements to meet the needs of men and women, people with children still in their care, people caring for elderly relatives, people with disability-related needs etc.53

This is also a theme which has been highlighted in HREOCs National Inquiry into Employment and Disability. The kind of flexibilities which assist workers with family care responsibilities are often the same as, or very similar to, the kinds of flexibilities which may be required by people with disability in the workplace.54

As part of the Welfare to Work reforms, and in response to one of the recommendations from HREOCs National Inquiry into Employment and Disability, the Australian Government has developed a one-stop information shop for matters relating to the employment of people with disability. JobAccess is an free online resource and telephone advice service for people with disability, co-workers of people with disability, employers and providers of Australian Government Employment Services.55 HREOC acknowledges this initiative and encourages the Australian Government to further implement the recommendations of the National Inquiry into Employment and Disability through their disability employment strategy.

Grandparent carers of children

In 2003, there were 22 500 Australian families in which the grandparents were the guardians of their grandchildren.56 These grandparents are not providing child care, but are primary carers for extended periods. The Women Lawyers Association of NSW indicated to HREOC that:

Increasing numbers of grandparents have full time care of their grandchildren with Family Court orders in place or a care and protection order through the Children's Court. The cost of going through the court system while maintaining employment and providing care for their grandchildren is one issue that needs to be addressed.57

Gaps in provision have emerged with submissions to HREOC highlighting ongoing areas of concern.

Grandparents providing full-time care for grandchildren have identified the need for respite, particularly during school holidays when the grandchildren are at home all day. Financial hardship and poor health of grandparent carers can exacerbate the stress associated with full-time caring during school holidays, putting grandparents at risk of carer burnout and social isolation.58

A study carried out by COTA National Seniors in 2003 found that many grandparent carers felt let down by Government authorities because they had often taken in their grandchildren at the request of State and Territory authorities and subsequently got little support or recognition in their care for often traumatized children. The study found that in most states foster and kinship care payments were restricted to children for whom formal care and protection orders were made by a court and Commonwealth benefits such as family tax benefits and Centrelink payments are means tested, which presented severe financial difficulties for many grandparents, particularly those who had been planning to be self-funded retirees.59 Concerns about financial difficulties were echoed in submissions to HREOC.

It is recognised by stakeholders that grandparents raising their grandchildren are often unaware of their entitlements or how to access support services. Financial support for grandparents raising grandchildren is a Commonwealth responsibility.60

Some grandparents are forced back into the workforce to earn extra money to support the children they are raising and others are forced out of work in order to care for the children.61

A submission from the Queensland Government also raised the issue of other support services, particularly respite care, for grandparent carers.

Flexible respite care responsive to the needs of the carers is required to enable carers to participate in work and community life. Respite care particularly for grandparents who are raising children has been identified by stakeholders as a priority need.62

There is a strong demand from grandparents who are raising their grandchildren for information services. Grandparents often need to update their parenting skills. They may also need assistance to access information about child care and to interface with the school system. In addition to financial hardships of grandparents raising children, many require support with parenting skills and accessing community services.63

The COTA National Seniors report put forward a range of recommendations to better support grandparent carers. These included Australian and State and Territory Governments better informing grandparents of their rights to income support, treating them equally to foster carers, recognising the extra emotional and psychological needs of the children, increasing respite care for grandparents, addressing the legal issues faced by grandparent carers and developing specialist parenting programs, community education campaigns and grandparent support groups.

Over the past three years the Australian Government has introduced a number of specific measures to better support grandparents who have primary care of their grandchildren. In addition, the Australian, State and Territory Governments have been working collaboratively through the Community and Disability Ministers Conference to consider the needs of grandparent and relative carers generally. However, it is clear from the issues raised with HREOC there are still outstanding issues with respect to grandparent carers.

Indigenous grandparent carers can face particular issues and a significant proportion of Aboriginal and Torres Strait Islander grandparents provide care for grandchildren (see below for further discussion of issues facing Indigenous carers). While some community organisations have established programs to specifically assist Indigenous grandparents, a recent Australian audit of research on out-of-home care recommended that research into best practice for Indigenous children and young people in out-of-home care is a key priority area.64

Young carers

Young carers face specific challenges, particularly in terms of completing schooling and securing and retaining paid employment.

It is estimated that there are around 388 800 carers in Australia under the age of 25.65 A recent study of young carers in the ACT identified that young carers still at school often miss school, or their attendance is disrupted due to their caring role, leading many to leave school prematurely. Not surprisingly this can make employment difficult to obtain. Most young carers live in families experiencing financial hardship and many do not access financial support in the form of a Carer Allowance or Carer Payment.66

A research project into the needs of young carers indicates that approximately 60 per cent of young primary carers between 15-25 years are unemployed or not in the labour force (compared to 38 per cent for the general population in this age group). Only four per cent of young primary carers aged 15-25 years are still at school (compared to 23 per cent for the general population in this age group).67

Retaining employment can be particularly difficult due to lack of awareness of issues facing young carers. A submission from People with Disability Australia noted that

There is often added responsibility placed on siblings to take on some caring responsibilities, which impacts on the stresses of the whole family. This is likely to affect employers perceptions about the work capacity of carers, particularly carers with disability.68

In terms of the ability of young carers to strike a better balance between paid work, study and their family/carer responsibilities, the most significant needs of young carers have been identified as:

• the provision of information about their rights and services available;
• schools which are more understanding and provide greater options for young carers to reach their full potential (including better linkages with community support services and parents;
• promoting more supportive environments;
• homework assistance programs;
• career counselling that is tailored to their situation;
• provision for out-of-school learning and assessment;
• provision for leave or time-out from school without penalty;
• more flexible timetabling and scholarship programs);
• flexible work environments and targeted transition to work and return to work programs;
• provision of regular, flexible and coordinated respite; and
• services focusing on young carers from CALD backgrounds, including Indigenous Australians.69

The Australian Government has recently attempted to address one of the key issues for young carers by providing funding to respite services and information, referral and advice services to target young carers at risk of leaving education prematurely.

Indigenous carers

A number of submissions specifically raised with HREOC the needs of Indigenous carers.70 Work by carers advocacy organisations and Indigenous organisations has also highlighted the particular needs of Indigenous carers.

There are around 51 600 Indigenous carers in Australia, accounting for around two per cent of carers in Australia and 12 per cent of Indigenous Australians.71

Work carried out by Carers Victoria indicates that very few Indigenous people identify as carers, however many have significant care responsibilities. Most are women and they are of all ages. Most care for more than one person, often for three or four generations of family members with care needs.72

Many Indigenous carers also carry a degree of fear and mistrust of mainstream services and most are not linked to carer support services.73

Many carer organisations across Australia have attempted to address these needs by offering specialist support for Indigenous carers though specialist support staff who coordinate programs like Indigenous social and support groups, counselling and assist with organising respite care.74 The Commonwealth Carers Resource Centre also employs an Aboriginal Carer Program Coordinator and provides a specialist carer support kit for Aboriginal and Torres Strait Islander carers.

The Working Carers Support Gateway told HREOC that:

The Federal Governments proposed new industrial relations laws were of particular concern to a group of Aboriginal working carers consulted. Concerns are broad (about the expected downward pressure on wages from a proposed shift to individual contracts, and job insecurity resulting from proposed changes to unfair dismissal laws), and specific (in relation to the proposed loss of current rights to take time off during their shift to attend to the person they are caring for, and make the time up later).75

Carers from culturally and linguistically diverse backgrounds

Carers from CALD backgrounds often face additional issues such as:

• cultural differences leading to misinterpretation and misunderstanding;
• lack knowledge of existing culturally appropriate support services and how to access them;
• no access to translated information;
• no support from extended family (when only parts of the family are resident in Australia); and
• social isolation leading to the feeling of exhaustion.76

The Disability Council of NSW also highlighted that:

In many CALD communities women are expected to undertake the role of care-giver for their immediate and extended family. A similar role for grandparents is also expected in many CALD communities. Such expectations impact on the willingness of some members of CALD communities to access services, and in turn influence the capacity of the family members of people with disability to participate in the paid workforce.77

This was an issue also raised by the National Council of Jewish Women of Australia in their submission to HREOC:

The eldercare responsibilities of sandwich women in the NCJWA study were shaped indirectly by Jewish cultural traditions and directly by Jewish community attitudes and expectations of children, particularly daughters, responsibilities for elderly family members, often accentuated if the elders were Holocaust survivors. External factors such as cultural and community expectations about womens intergenerational responsibilities have salience for other culturally and linguistically diverse groups in Australian society.78

8.5 Government provision of formal care for older people

Formal care services for older people who need assistance include residential aged care, respite care, day care, community care programs and, for people with disability, supported accommodation in group homes and attendant care.79

The Work + Family Roundtable stressed to HREOC that:

the establishment of appropriate and high quality formal caring services that are affordable and accessible to all Australians with caring responsibilities is urgent and critical for families needing to improve their work and family regime.80

The HACC program is the largest program of its kind providing nearly 750 000 older people, people with disability and their carers with basic maintenance and support services including domestic assistance, home nursing, transport, meal services (centre-based and at home), home modifications and maintenance, gardening and shopping.81 Approximately 50 per cent of HACC clients classified as care recipients also receive assistance from a relative or friend.82

With increasing levels of home based care and reduced residential care, respite care has emerged as an increasingly important service area, reflected by the introduction of the National Respite for Carers Program.83 Respite care provides much needed support for primary carers. In addition to community-based respite services, almost half of all admissions to residential aged care facilities are for respite care.84

8.6 Greater availability of formal care to meet growing need

Demand for formal care for older Australians has been growing over the past decade and will continue to grow significantly. Both the formal and informal care needs of older people and people with disability are ballooning in line with Australias ageing population.

By 2021 it is projected there will be four million people aged 65 years and over85 but it is the growth of the population aged 85 years and over that will most affect demand for and formal and informal care. Between 1997 and 2051 the proportion of people in this age group is projected to almost double as a proportion of the population aged 65 years and over (from 9.6 per cent to 18.8 per cent).86

Concern was expressed to HREOC that:

... the overall effect of the ageing population will be recourse to professional and institutional care for an increasing proportion of the elderly.87

The use of formal care services has increased significantly in recent years with relatively fewer older people remaining at home with only unpaid care.88 While formal care has increased, there is also increasing pressure being placed on informal carers to provide the required level of assistance, particularly when demand for services is high and in many cases waiting lists for services remain.

Slightly more than half of people aged over 60 years had a reported disability and 19 per cent had a profound or severe core-activity limitation.89 Older people living at home or with family most commonly require assistance with property maintenance and health care, followed by transport, housework, mobility and self-care. Informal carers provide the majority of the required assistance however 61 per cent also receive some formal assistance from health care professionals and tradespeople.90

The ageing of our population has important implications both for ageing carers and people needing care and requires governments to give increased attention to this area. These concerns were reflected in submissions to HREOC, particularly in regard to older carers.91

The rationale for the move towards community and other types of integrated care is not only based on community attitudes, preferences and recognition of the fundamental human right to dignity, a decent quality of life and social wellbeing for older people and people with disability; it is also a cost effective solution for government. Older people and their carers meet a large proportion of the cost of care which would otherwise be borne by the state. Community-based interventions are often more cost effective than institutional care.92

Informal care is provided for a range of reasons, such as a duty, reciprocity and love. However, informal care carries with it a cost to the carer in terms of both direct costs such as the purchase of special equipment, health services, respite care and other support services and indirect costs, in particular forgone earnings through leaving the paid workforce, reducing the hours of paid work and loss of superannuation income. The opportunity cost of this care work is estimated to be worth approximately $4.9 billion per year.93

There will be a need for governments to put an increasing level of investment into community based and residential care programs in line with the projected increase in the number of families requiring these services. Carers Australia has suggested that current levels of need require not only review and streamlining of the delivery of existing community care programs but a 30 per cent funding increase to meet community demand.94 There have been some recent increases in funding in this area.95

Governments have clearly responded to the need to increase services to support older people, people with disability and their carers through such initiatives as increasing residential aged care places, financial bonuses for carers, increasing assistance to the National Respite for Carers Program (particularly for working carers), and the extension of the Carer Allowance to carers who do not live with the person for whom they care. However, there is more work that could be done in this area, particularly to meet the needs of older people with disability as well as their carers. While HREOC has not made a recommendation in this area, we support further work on these issues, particularly as care needs increase in line with the ageing of the population and the ageing of the workforce.

Reviewing existing vocational training packages in the aged care and disability sectors to ensure the employees are better aware of the needs of older people with disability is another important area that warrants attention.

Another critical and related issue identified in submissions is the need for improved remuneration and clear career structures for those who are paid to provide care.96 HREOC acknowledges that there are existing Australian Government programs that are working towards improving skills, training, recruitment and retention in the aged care industry.97 As with child care, improved working conditions are essential for providing high quality care services.98 A shared work - valued care approach to paid work and family/carer responsibilities must properly value the caring work that paid carers undertake by ensuring quality employment conditions.99

8.7 Specialist disability services

The Womens Electoral Lobby Australia (WEL) Australia highlighted to HREOC the importance of taking into consideration the needs of people with disability and older people into policy development in relation to the balance between paid work and family/carer responsibilities. WEL point out that many of those requiring care will both enjoy and benefit from access to those services particularly geared to their specific developmental, social and emotional needs. While these needs may often be met by family members, services are more likely to be successful if there are both choices and alternatives.100

One fifth of the Australian population is affected in some way by a disability that restricts, limits or impairs their everyday activity and which has lasted, or is likely to last, for at least six months.101 Around 60 per cent of people with disability living at home (that is, not in a residential care facility) reported needing assistance to manage a health condition or cope with the activities of everyday life.102 Of the people who needed assistance, the vast majority (79 per cent) received help from family and friends, mainly partners, parents or children and just over half received assistance from formal care services such as HACC services or volunteer home help.103

Specialist disability services in Australia are currently provided within the framework of the Commonwealth State Territory Disability Agreement (CSTDA) which sets out the arrangements for the delivery, funding and development of specialist services for people with disability. Under the Agreement, the Australian Government is responsible for planning, policy setting and management of specialised employment services. State and Territory governments are responsible for delivering supported accommodation, community support, community access and respite services, while support for print disability and advocacy is a shared responsibility between States/Territories and the Commonwealth.104

The CSTDA is based on the premise that:

... communities are enriched by the inclusion of people with disabilities and that positive assumptions about the gifts and capacities of people with disabilities, including those with high support need, are fundamental to their experience of a good life and to the development and delivery of policy, programs and services... Governments ... seek to work cooperatively to build inclusive communities where people with disabilities, their families and carers are valued and are equal participants in all aspects of life ... [and] ... Governments recognise that people with disabilities have rights equal with other members of the Australian community, and should be enabled to exercise their rights or be accorded these rights.105

Government expenditure on CSTDA-funded services during 2004-2005 totalled $3.3 billion (excluding administrative costs) with the major types of services including:

• accommodation support;106
• community support;107
• community access;108
• respite services;109
• employment;110
• advocacy, information and print disability;111 and
• other services which including research and evaluation, training and development, peak disability bodies.112

Specialist disability services should be designed and delivered so that they form a key plank of a shared work - valued care approach by supporting people with disability to improve the balance between their paid work and caring responsibilities as well as supporting the needs of working carers. Services should be able to adequately respond to the diversity of paid work and care requirements of people with disability and their carers and have the flexibility to address individual consumers needs.

People with disability and their carers from CALD113 and Indigenous backgrounds often face particular difficulties in accessing specialist disability services which could enable them to experience a better quality of life, including improving their capacity to balance paid work and family/carer responsibilities.

Indigenous people with disability, their families and communities experience some unique barriers which prevent them from accessing formal services.114 One of the reasons is the high levels of disability in Indigenous communities, with available evidence suggesting that levels of disability are between two and three times higher than in the broader Australian population.115

Many Indigenous people with disability and older Aboriginal and Torres Strait Islander people needing assistance are cared for by extended family, reflecting traditional values about kinship and responsibility. However not all extended families are in a position to provide an optimal level of care due to poverty, family breakdown, substance misuse, the burden of grief and stress and a lack of knowledge about providing care and accessing support services. Data collected federally as part of the CSTDA suggests that one in three Indigenous people with disability do not use the services available to them.116

8.8 Conclusion

All Australians will rely on the care of others in childhood, during periods of illness or disability or in old age. The provision of this care across the life cycle is carried out by not only family members but underpinned by the existence of formal care and support services provided or funded by governments. Individuals receiving care rely enormously on the support services provided by governments, often at difficult or traumatic times of life.

Families, as the source of significant caring work, also rely on governments to support them financially and practically in their roles as carers. While caring is often carried out because of feelings of love and familial duty, governments must recognise the enormous financial and social contribution that carers provide and support them accordingly. This is particularly important given Australias ageing population and our increasing care needs. There is clear evidence to demonstrate the cost savings to government of assisting family carers in their roles.

Australia needs a shared work - valued care approach to the care for adults which recognises the universal nature of the need for care and provides affordable and accessible support services that allow people with disability and older people to participate as fully as possible in their communities.117 The principle of shared work - valued care means valuing the work of paid carers by providing them with decent wages and employment conditions. It also means providing family carers with flexibility in their workplaces,118 ensuring that unpaid carers are financially supported so that their caring work does not leave them impoverished, and providing practical support and resources for the diverse range of carers.

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Footnotes

July 31, 2009

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