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Services and Assistance: Formal respite care
A series of Acts and Reviews since the 1985 Home and Community Care Act have supported a move away from large-scale residential care of people needing help with day-to-day activities. There has been a shift to the provision of a range of support services to people in their own homes, or in smaller home-like centres.1 With this trend towards de-institutionalisation of care since the mid-1980s, the emphasis on community care of people with a disability has increased.
However, caring work can place substantial emotional and physical demands on carers as well as affecting aspects of their daily life such as employment, recreation, education and housework (see Australian Social Trends 1996, Principal carers and their caring roles). Respite care can alleviate some of these demands.
Assistance is offered to carers by government and non-government organisations, profit and non-profit making suppliers of goods and services, and by family, friends and neighbours. Help given by family, friends and neighbours is generally termed 'informal care', while help provided by other sources is often referred to as 'formal care'. Community organisations (such as Meals on Wheels) and private sector service providers assist carers by supplying services such as respite care on a no-cost, subsidised cost or market rate basis. The Commonwealth and State and Territory Governments contribute funding for many services that are delivered by non-government organisations. Some government bodies deliver services directly.
The Commonwealth Government's major role in providing assistance is direct income support for carers and the people they care for. In 1998, 69% of primary carers received a government pension or benefit.2 In June of that year there were 33,979 people receiving Carer Payment (formerly known as Carer's Pension), up from 5,023 people receiving Carer's Pension at 30 June 1986, the end of the financial year in which the Carer's Pension was introduced.3,4 Other Commonwealth direct income payments that carers may receive include Carer Allowance, Parenting Payment, Rent Assistance and Age Pension.
Recent government initiatives have sought to expand access to respite care. The 1999-2000 Commonwealth Government Budget allocated an extra $100 million to support the respite needs of carers of people with dementia and other cognitive disorders and of carers of younger people with a disability.5 This gave a total allocation of $208 million to respite care services for the four financial years from 1999-2000 to 2002-2003.6 Under the Commonwealth Government's National Respite for Carers Program, Carer Resource Centres and Carer Respite Centres have been established.
Formal and informal care
In 1998, the Disability, Ageing and Carers Survey identified 447,900 people aged 15 years or older as primary carers of a person with a profound or severe activity restriction. These primary carers represented 3% of Australia's population aged 15 years or older.
Giving care is often time consuming. In 1998, 161,300 people (36% of primary carers) usually spent at least 40 hours per week helping or supervising people with a disability. Many primary carers (49%) received assistance with their care activities from family, friends, neighbours, government bodies, non-profit community organisations, and profit making, private sector service providers. This assistance may take many forms, such as help with transport, shopping, meal preparation, household maintenance, and physical assistance to the recipient of care. It also provides social interaction for the carer or the person with a disability. Apart from any assistance they receive from these sources, carers may also need a break from their caregiving from time to time. In 1998, 59,000 (13% of all primary carers) said that they had received formal respite care at some time in the past; 35,400 (8%) had received it in the three months prior to the survey.
Types of formal respite care
There is considerable variety in the types of available formal respite care services, the types of organisations and individuals providing respite care, the costs of their use and their availability at different locations. Eligibility criteria for the use of various types of care (be they on a regular, ad hoc or emergency basis) also vary, as does the extent to which subsidies meet the cost of the service.
Of those primary carers who had received respite care in the three months prior to the survey, 24% had used a day-care centre, 32% had received in-home care, 42% had used residential respite care and 11% had employed some other form of respite care.
Burden, need and demand
Primary carers may not feel they have a need for formal respite care. There were 345,100 primary carers identified in the 1998 Survey of Disability, Ageing and Carers who had not used respite care and did not express a need for it. Of the 102,800 people identified as having a need for a service, 57% had used a respite care service and 34% had used such a service in the previous three months.
The likelihood of a primary carer needing and receiving formal respite care increases as the burden of care rises. In 1998, only 10% (or 20,200 out of 195,000) of primary carers who provided less than 20 hours of care per week had a need for respite care. Carers who provided at least 40 hours of weekly care, on the other hand, were much more likely to say they needed respite care (38%).
Similarly, those caring for people whose severity of restriction was such that they always needed assistance (i.e. classified as having a profound restriction) were more likely to need respite care (33%) than carers whose main care recipient sometimes needed assistance (severe restriction) (11%).
Need for formal respite care was also greater among carers giving continuous care (28%) and those without a back-up (31%) than among carers providing episodic care (11%) and among those who had a back-up (17%). However, carers who did not receive help to care from family, friends or formal organisations were less likely to feel the need for respite care (15%) than carers who usually received assistance in their caring role from these sources (31%), possibly because these latter carers were more likely to be providing care for the most severe cases.
The extent to which carers had used a service varied from between 43% of carers who did not usually receive help from family, friends and formal organisations, to 65% of those who did usually receive help from any of these sources. A similarly high proportion (65%) of carers who had been caring for their main care recipient for at least ten years and who felt a need for respite care received formal respite care.
Need for, and receipt of, respite care varied little with carer age but was markedly different for male and female carers. Only 15% of male carers felt they needed formal respite care, and of this group only 43% received respite care. In contrast, 26% of female carers felt a need for respite care. Of these carers, 61% received such respite.
People caring for their partners were less likely to want respite care than those caring for other friends and relatives. Only 16% of those caring for their partner felt that they needed respite care. Less than half (45%) of these spouse carers who needed respite care had ever used such a service. On the other hand, parents caring for a child were considerably more likely to need respite care (39%) and also more likely to have received formal respite care services (65%).
Unmet need for respite care
From the 1998 Survey of Disability, Ageing and Carers, primary carers can be grouped into four categories to assess the extent to which their need for respite care had been met at some time in the past: carers either did not need respite; their need had been fully met; their need had been partly met; or none of their needs had been met.
Overall, more than three quarters of primary carers (77%) did not need respite care. Of those who had needed it, 30% had received respite care in the past and did not feel they had needed any more (fully met). A similarly sized group (27%) had received respite care in the past but felt that they had needed more access to respite care (partly met). The remaining 43% (43,800 carers) felt they had needed to access respite care, but had never used such services (fully unmet). When considered as a proportion of all primary carers, 16% felt some level of unmet need for respite care (10% with fully unmet need and 6% with partly met need).
Of those carers who needed respite care, those caring for a spouse (45%) were less likely than those caring for a parent (55%), child (65%) or other person (72%) to have received formal respite care.
The proportion of people who receive respite care is an over-estimate of the extent to which need is satisfied. Because the proportion of carers who received respite care and who said their needs had been fully met was around 30% for those caring for a partner, parent or child, the proportion with some degree of 'unmet' need was around 70% for each of these groups.
Reasons for not receiving respite care
The 1998 Survey of Disability, Ageing and Carers asked primary carers with an unmet need for formal respite care (except those who had received some respite care in the previous three months) the main reason for not receiving respite care. The most common main reason why these carers had not received respite care was that they had either not heard of the service or didn't know enough about it (40%).
For 23%, the main reason for not having used respite care was that the person they were mainly providing primary care for did not want formal respite care. While the cost of respite care was rarely cited as the main reason for not accessing the service, lack of availability of any, or any suitable, respite care was the main reason that almost one in five carers with an unmet need had not used a respite care service.
Access to respite care outside of the capital cities
Service delivery in rural and regional Australia is an ongoing issue of social concern. There is no readily available information to show whether carers in rural areas experience more difficulty accessing formal respite care than those living in urban areas. However, the 1998 Survey of Disability, Ageing and Carers provides insights into differences between carers living in capital cities and those living in other areas.
The survey shows that there were only minor differences in the proportions of carers in capital cities and other areas who did not receive respite care for reasons related to service awareness or availability. Capital city carers with a need (as previously defined) for respite care were slightly more likely than their rural and regional counterparts (21% compared to 19%) to say their main reason for not receiving respite care was because they had no, or not enough, knowledge of formal respite care services. On the other hand, those living outside capital cities were only slightly more likely than those in capital cities (14% and 10% respectively) to say that they had not received respite care because of a lack of any, any suitable, any readily available, or any affordable service.
PRIMARY CARERS NEEDING RESPITE CARE: SELECTED MAIN REASONS FOR NOT USING RESPITE CARE(a), 1998
(a) Those whose needs were partly met and who had received some respite care in the previous three months were not asked their main reason for not receiving enough respite care.
Source: Unpublished data, 1998 Survey of Disability, Ageing and Carers.
1 Australian Institute of Health and Welfare 1997, Australia's Welfare 1997: Services and Assistance, AIHW, Canberra.
2 Australian Bureau of Statistics 1999, Disability, Ageing and Carers: Summary of Findings, Australia, 1998, cat. no. 4430.0, ABS, Canberra.
3 Commonwealth Department of Family and Community Services 1999, Customers, a statistical overview, 1998, DFCS, Canberra.
4 Department of Social Security 1986, Annual Report 1985-86, AGPS, Canberra.
5 Centrelink 1999, A Carer's Guide to Financial Support, Respite Co-ordination and Information Services, Centrelink, Canberra.
6 Commonwealth of Australia 1999, Budget Measures 1999-2000: budget paper no. 2, AGPS, Canberra.
7 Unpublished data, Department of Health and Aged Care.
8 Australian Institute of Health and Welfare 1999, Australia's Welfare 1999: Services and Assistance, AIHW, Canberra.