Ageing parent carers of people with a disability

Ageing parent carers of people with a disability

Lixia Qu, Ben Edwards, Matthew Gray

Report – October 2012

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1 Introduction

The ageing of the Australian population is expected to increase the proportion of the population requiring care as a result of a disability or frail old age. This is expected to increase the demand for informal care (see, for example, Australian Institute of Health and Welfare [AIHW], 2004; Percival & Kelly, 2004). Informal care is the unpaid support and assistance provided to people with a disability or chronic illness by their families and friends. Informal care is critical to the welfare system as it provides the main source of assistance for people with a disability or chronic illness and of home-based support over a sustained period of time. The value of services provided by informal carers in Australia exceeded $40 billion in 2010 (Access Economics, 2010). Informal carers commonly help with a range of tasks, including self-care, health care, mobility and property maintenance. They play a significant role in supervising and encouraging people who need assistance with day-to-day activities, supporting their social inclusion, managing formal care services and advocating on their behalf. There are an estimated 771,400 primary carers in Australia (Australian Bureau of Statistics [ABS], 2010), and they are usually close family members living with the person for whom they care. They provide the most support and assistance to people with a severe or profound core activity limitation.

Within general concerns about an increasingly ageing population, an issue that has received much less attention is that the number of older parent carers of a son or daughter with a disability will also increase in coming decades (Llewellyn, Gething, Kendig, & Cant, 2003). Indeed, the estimated number of ageing parent primary carers (aged 65 years and over) in Australia increased from 6,400 in 2003 to 16,800 in 2009 (ABS, 2004, 2010). Consistent with this trend, the reports on disability support service users show that the number of service users who were cared for by their parents rose from 76,873 in 2008-09 to 84,032 in 2009-10, and the number of users cared for by parents aged 65 years or over increased from 7,343 to 8,111 during the same period (AIHW, 2011a, 2011b).

As parent carers get older, their anxiety increases about who will care for their adult child with a disability when they are no longer able to do so or should they predecease their adult child. The uncertain future that parent carers face was highlighted in a study by Llewellyn et al. (2003) about the lifetime caring experiences of ageing parents who look after a son or daughter with intellectual disability:

Becoming older after an adult lifetime of caring brings physical and emotional tiredness and concern for the future. Faced with the non-normative expectation that, as older parents, they will most likely die before their cared-for adult son or daughter heightens the anxiety already felt about the likelihood of deteriorating health and being unable to continue primary carer responsibilities … For older parent carers the question is who will look after my child and in the way that I have done? (pp. 41, 44)

Many people with a disability are equally concerned about what will happen to them and who will support them when their parents die. The Disability and Ageing Inquiry by the Senate Community Affairs References Committee (2011) sought to identify ways in which to support families to develop lifelong and sustainable care plans for the future. Its report provided evidence that a relatively low proportion of ageing parents plan for the future for their son or daughter with a disability. Issues that need to be considered include the difficulties experienced by an adult with a disability with transitioning to care outside the family home if there are no alternative accommodation places available. The lack of accommodation choices in turn affects a family's ability to put in place plans for the future.

If a parent carer is no longer able to care for their son or daughter with a disability, the person with a disability may then require access to housing and support services, as well as ongoing psychosocial support from other family members and friends. Informal unpaid family care may be an outcome for some families. For parent carers, planning ahead is important; however, the Disability and Ageing Inquiry (Senate Community Affairs References Committee, 2011) found that it is difficult for many ageing parents to plan for the future. Various barriers hinder them from doing so. For example, they may have difficulty accessing information; there may be a lack of time, energy and resources; or there may be issues relating to accessing needed services. The inquiry report stressed that many ageing parent carers find planning for the future a difficult and multifaceted task. Existing programs in Australia for planning for the future are not usually linked to funding, which would otherwise enable families to plan and implement secure housing arrangements for the person with a disability. People with a disability face enormous difficulties with leaving the parental home and finding alternative accommodation, which leads many to remain in the parental home well into middle age.

The inquiry report (Senate Community Affairs References Committee, 2011) emphasised the need for a number of interconnected and coordinated services for ageing parents and their son or daughter. These include the need to improve the availability, accessibility and quality of information for such families; provide support for psychosocial, legal and financial planning; and make available more options for housing and support. These services would provide more certainty and confidence for parent carers who are planning for the future and for their son or daughter with a disability.

With improvements in health care services and community support, people with a disability are likely to live longer, and are more likely than in the past to outlive their parents (Patja, Livanainen, Vesala, Oksanene, & Ruoppila, 2000; Strauss, Shavelle, Reynolds, Rosenbloom, & Day, 2007). Population growth and ageing have implications for whether the current highly rationed system of housing and support will be able to cope with the potential increase in the demand for services from this group (Pierce, 2007; Pierce & Paul, 2010). Beer and Faulkner (2009) carried out a qualitative study on housing issues among people with a disability and their carers, and found a great deal of family concern about where persons with a disability would live if they lost their carers.

This paper, commissioned by Carers Victoria, uses existing data to explore the numbers, characteristics and potential growth over the coming decades of the population of ageing parents looking after a son or daughter with a disability, in Victoria as well as in Australia.

2. Definitions and data

2.1 Defining disability and datasets for analyses

There is no nationally accepted definition of "disability" or method of categorising the severity of different types of disabilities in Australia. According to the ABS (2010), "disability" is defined as follows:

A person has a disability if they report that they have a limitation, restriction or impairment, which has lasted, or is likely to last, for at least six months and restricts everyday activities. (p. 27)

Estimates of the number of people with a disability vary markedly, depending on data sources and survey designs (Productivity Commission, 2010). The Survey of Disability, Ageing and Carers (SDAC) is considered to be the best Australian source of information on the number of people with a disability. This nationally representative survey was carried out by the ABS in 1998, 2003 and 2009, and there were similar surveys in earlier years. SDAC 2009 had a sample of over 64,000 persons (with and without a disability), from both private and non-private dwellings, and it is a key dataset for estimating prevalence information on disability and carers. This survey collected detailed information from three population groups: people with a disability; older people (aged 60 years and over); and carers, the people who provide support and assistance to people with a disability and older people.

People with a disability vary in their need for assistance. In each SDAC, when people were affected by their disability in the core activities of communication, mobility and self-care, they were categorised into four levels of disability (profound, severe, moderate and mild) according to whether a person needed help with, had difficulty with or used an aid or equipment for specific tasks related to the core activities. A person with a profound disability was one who was unable to do a core activity task, or always needed help or supervision with it. A person with a severe disability sometimes needed help or supervision with a core activity task, or had difficulty understanding or being understood by family and friends, or could communicate more easily using sign language or other non-spoken form of communication. Although people with a moderate disability may not have needed any assistance, they had difficulty with at least one core activity task. People with a mild level of disability could perform core activity tasks without any help or difficulty; nevertheless, they may have needed aids and equipment, or needed help or supervision when using public transport or with other life tasks.

In addition to these four SDAC levels, the ABS (2010) also describes another group of people with a disability. This group may not need any assistance in their core activities; however, their condition may mean they have difficulties participating in education or employment, and therefore may need assistance with self-management and planning.

The concept of "parent carers" is also not entirely straightforward. Parents who look after their son or daughter with a disability may not identify themselves as being "carers". Indeed, parents living with their son or daughter with a moderate or mild disability or with a disability restricting participation in education or employment are not generally considered to be "primary carers" in statistical collections,1 although most provide informal care and support to their son or daughter and assist them with everyday activities, financial support, decision-making, self-management and planning. Llewellyn et al. (2003) noted that parent carers often see themselves primarily as a parent who takes responsibility for the welfare of their son or daughter with a disability, rather than as a carer.

In this paper, we focus on parents who live in the same residence as their son or daughter who has a disability that leads to a core activity limitation or results in an education or employment restriction. These parents are referred to as "parent carers", and parents who are 65 years and over are considered "ageing parent carers". There are also parents who have a child with a disability who is living elsewhere, but while many of these parents provide ongoing assistance to their sons or daughters, they are not considered in this paper. SDAC 2009 estimated that there were 4,100 primary carers aged over 65 who looked after a son or daughter living elsewhere. It is likely that many of these shared the concerns of co-resident parent carers about a future when they can no longer support and assist their adult child.

This paper uses SDAC 2009 and 2006 Census data to examine the characteristics of parents and their son or daughter with a disability who lives with them. In the analyses using SDAC, people with a disability who were living with their parents have been divided into two groups according to their disability status: (a) those with profound or severe core activity limitations ("more severe disability"); and (b) those with moderate or mild core activity limitations, or with an education or employment restriction ("milder disability").

Because the growing number of parent carers, especially ageing parent carers, has implications for service demand, this paper also uses the prevalence rate of people with a disability who live with their parents - derived from SDAC 2009 and population projections released by the ABS (2008) - in order to explore future scenarios and the likely growth in the number of ageing parent carers in the coming decades.

2.2 Limitations of existing data

The existing data sources that help understand the needs of people with a disability and their carers, while important, also have their limitations.

SDAC datasets, for example, are valuable sources of information for understanding the needs of people with a disability, their families and those who provide care, but it is difficult to use the surveys to examine issues such as the socio-economic characteristics of ageing parent carers in certain subgroups (e.g., those in their 70s and beyond), due to insufficient sample sizes.

While the 2006 Census data can be used to fill some of the gaps resulting from the sample size limitations of the SDAC, the Census itself also has its limitations. The 2006 Census included just one question that identified people with a profound or severe disability. The identification of people with a profound or severe disability based on a single question is not as rigorous as other surveys such as SDAC. Thus, it is likely to have underestimated the number of people with a profound or severe disability (Productivity Commission, 2010). It was also not possible to use the Census to identify older parents who looked after their adult children with a milder disability.

Another example is the Disability Services National Minimum Data Set (NMDS), which collects data about services users under the National Disability Agreement (NDA). This includes data about informal care, including primary carers who provide sustained assistance to a family member, friend or neighbour. This dataset contains limited information, as NDA employment services are not required to collect information about informal carers or about living arrangements. In addition, the NMDS only captures service users, not those who have support needs but do not use or have withdrawn from these services.

1 The ABS (2010) defines a "primary carer" as follows: "A primary carer is a person who provides the most informal assistance, in terms of help or supervision, to a person with one or more disabilities or aged 60 years and over. The assistance has to be ongoing, or likely to be ongoing, for at least six months and be provided for one or more of the core activities (communication, mobility and self-care)" (p. 34).

3. Selected characteristics of people with a disability and their parents

This section provides an overview of the demographic characteristics of people with a disability who are living with their parents, according to their disability status. The analyses are based on the data from SDAC 2009.

3.1 Characteristics of people with a disability living with their parents

In 2009, there were about 446,300 Australians with a disability (profound, severe, moderate or mild core activity limitation, or with education/employment restrictions) who were living with their parents. Of these, 218,700 were adult children (15 years and over) and 236,100 had a more severe disability. There were 626,000 fathers and mothers who lived with a son or daughter with a disability, and 60,000 of these parents were aged 65 years and over.

Table 1 shows the age distribution of people with a disability who were living with their parents, by their disability status. More than half of these people (56%) were under 15 years of age, close to a quarter (24%) were 15-24 years, nearly a tenth (9%) were 25-34 years, and an eighth (12%) were aged 35 years and over. However, those with a more severe disability had different age profiles from those with a milder disability, with the former group being younger than the latter. For example, 68% of those with a more severe disability were under 15 years, compared with 43% of their counterparts with a milder disability. In contrast, in the more severe disability group, 24% were aged 15-34 years and 9% were older than 35 years. The proportions of these age groups for those with a milder disability were 42% and 15% respectively.

It is worth noting that among people with a disability aged 35 years and over, around nine in ten (86% of those with a more severe disability and 90% with a milder disability) had at least one parent aged 65 years or older. Among those with a disability aged 45 years and over, all had parents aged 65 years or older. And while the majority of people with a disability who were living with their parents were with both parents (62%), a substantial proportion lived with a parent who was single (38%), often their mother.

Table 1: Age distribution of people with a disability who were living with their parents, by disability status, 2009
Age More severe disability a (%) Milder disability b (%) All (%)
< 15 years 67.8 42.6 56.1
15-24 years 17.0 31.4 23.7
25-34 years 6.7 10.8 8.6
35-44 years 5.0 6.6 5.7
45-54 years 2.4 5.6 3.9
55-64 years 1.1 2.6 1.8
65+ years 0.1 0.5 0.3
Total 100.0 100.0 100.0
No. of observations 707 611 1,318

Notes: a People with profound or severe core activity limitations. b People with moderate or mild core activity limitations, or with an education or employment restriction. Percentages may not total exactly 100.0% due to rounding.

Source: SDAC 2009

Among people with a disability living with their parents, the most common problem caused by their main condition was having difficulty in learning or understanding things, with more than half having this difficulty. One-quarter had a speech difficulty, the second most common problem. Such cognitive problems were more common among those with a more severe disability than they were for those with a milder disability (see Appendix Table A1).

3.2 Age of parent carers

Table 2 shows that most parent carers were aged 35-54 years, with 69% of fathers and 62% of mothers being in this age group. Fourteen per cent of fathers and 10% of mothers were 55-64 years, while 8% of fathers and 10% of mothers were 65 years and over. Corresponding to the different age profiles of people with either a more severe or a milder disability (discussed in section 3.1 above), parent carers with a son or daughter with a more severe disability were younger than those with a child with a milder disability. Fifty-one per cent of fathers and 60% of mothers who looked after a son or daughter with a more severe disability were under 45 years, compared with 34% of fathers and 43% of mothers of offspring with a milder disability. By contrast, 27% of fathers and 26% of mothers of a child with a milder disability were aged 55 years or older, compared to 18% of fathers and 16% of mothers with a child with a more severe disability.

Table 2: Age distribution of parent carers, 2009

Age of parent

Fathers Mothers
Child with more severe disability a (%) Child with milder disability b (%) All (%) Child with more severe disability a (%) Child with milder disability b (%) All (%)
15-24 years 0.2 0.0 0.1 1.6 0.4 1.1
25-34 years 13.3 4.7 9.4 19.5 10.9 15.7
35-44 years 37.7 29.7 34.1 39.1 31.8 35.9
45-54 years 30.8 39.0 34.5 23.4 30.5 26.5
55-64 years 12.6 15.4 13.8 8.1 13.4 10.4
65-74 years 3.1 5.8 4.3 5.2 6.1 5.6
75+ years 2.4 5.5 3.8 3.1 6.9 4.8
Total 100.0 100.0 100.0 100.0 100.0 100.0
No. of observations 422 344 766 616 478 1,094

Notes: a People with profound or severe core activity limitations. b People with moderate or mild core activity limitations, or with an education or employment restriction. Percentages may not total exactly 100.0% due to rounding.

Source: SDAC 2009

Of course, the older a son or daughter with a disability is, the greater the age of their parent carers; for example, at least 80% of parent carers with adult children with a disability aged 35 years and over were themselves 65 years and older.

3.3 Employment status of parent carers

There is evidence that an individual's employment history affects income in later life, and lower retirement income was linked with fewer years of employment history (de Vaus, Gray, Qu, & Stanton, 2011; Sefton, Evandrou, & Falkingham, 2011). While over the last few decades an increasing number of women (including those with children) have entered paid employment, women still take the main responsibility for caring for their children (Craig, Mullan, & Blaxland, 2010). Therefore, the effects on labour force participation of having a child with a disability are more likely to be felt by mothers than by fathers. Figure 1 shows that mother carers across all age groups were less likely to be employed (full-time or part-time) compared with other women.

Figure 1: Female employment rates, by age and mother carer status, 2009

Figure 1: Female employment rates, by age and mother carer status, 2009 -as describted in text

Source: SDAC 2009

3.4 Parent carers with a disability

It is important to note that some parent carers have a disability themselves and therefore may also need help to sustain the care of their son or daughter at home. Of parents who were living with a son or daughter with a disability, 6% of fathers and 10% of mothers had a profound or severe disability themselves (and thus needed assistance with at least one core activity), and 19% of fathers and 21% of mothers had a milder disability. Understandably, disability conditions were more prevalent among older parent carers; for example, 33% of mother carers aged 65 years and older had a more severe disability and 34% had a milder disability, compared with 7% and 17% respectively of mothers aged under 55 years.

3.5 Summary

Of the people with a disability who were living with their parents, four in ten were adults (aged 15 years and older), and more than one in ten were aged 35 years and older. People with a milder disability who were living with their parents were older on average than those with a more severe disability. A substantial minority of parent carers were in old age (65 years and older), and a large proportion were approaching old age (55-64 years). Mother carers, in particular, were less likely to be employed and therefore more financially disadvantaged when compared with other women of the same age. It is worth noting that some parent carers may also need help themselves, with ageing parents being more likely to have such needs.

4. Characteristics of ageing parent carers

As shown above, a substantial minority of parent carers were aged 65 years and older. It is important to have a better understanding of these ageing parents and their needs. The limited sample size of the SDAC 20092 meant it was not possible to further examine the demographic characteristics of older parent carers by smaller age groups. The 2006 Census data enable such analyses. However, as mentioned in section 2.2, the 2006 Census data are likely to underestimate the number of people with a more severe disability and thus underestimate the number of their parent carers. Despite this shortcoming, the 2006 Census is useful because it is a count of the whole Australian population and allows a breakdown of the data by individual states and territories. This section examines the characteristics of parents aged 65 years and older who were living with adult children with a more severe disability. It explores family type, whether the parent carer was in paid work, whether the parent was living with a partner, family income, and whether the parent needed assistance themselves in their core activities. The analyses compare Victorian and national data. The data is reported separately for Victoria because the research was commissioned by Carers Victoria, who are particularly interested in the Victorian situation.

4.1 Characteristics of ageing parent carers

As shown in Table 3, there were nearly 5,000 parents aged 65 years and older in Victoria who were living with a son or daughter with a more severe disability. The number was about 18,000 nationally, according to the 2006 Census data. It is worth noting that there were 2,943 fathers and 3,152 mothers in Victoria aged 55-64 years, and 10,858 fathers and 11,582 mothers in Australia aged 55-64 years who are approaching older age (data not shown in the table).

Table 3: Ageing parent carersa in Victoria and Australia, by age and gender, 2006
Age Victoria Australia
Fathers Mothers Total Fathers Mothers Total
65-69 years 844 960 1,804 3,031 3,322 6,353
70-74 years 570 709 1,279 2,076 2,578 4,654
75-79 years 412 489 901 1,417 1,962 3,379
80-84 years 215 347 562 801 1,339 2,140
85+ years 102 214 316 430 907 1,337
Total 2,143 2,719 4,862 7,755 10,108 17,863

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations.

Source: 2006 Census customised tables

Many ageing parent carers are not living with a partner (i.e., are sole parents) and thus have to shoulder the bulk of the caring responsibilities for the adult with a disability. Table 4 shows that this was especially the case for mother carers, with 54% of mother carers (compared with 14% of father carers) aged 65 years and older in Victoria being sole parents in 2006. A similar picture emerged nationally. The older both mother and father carers were, the more likely they were to be living without a partner, in both Victoria and Australia as a whole. For example, 37% of mother carers aged 65-69 years in Victoria were without a partner, and this proportion rose to 48% for those aged 70-74 years and to 78% for those aged 80-84 years.

Table 4: Ageing parent carersa without a partner, Victoria and Australia, by age and gender, 2006
Age Victoria Australia
Fathers (%) Mothers (%) Fathers (%) Mothers (%)
65-69 years 7.8 37.2 9.3 39.6
70-74 years 11.8 48.4 12.8 50.3
75-79 years 13.8 61.1 16.5 62.9
80-84 years 25.6 77.6 27.8 78.1
85+ years 52.5 87.4 45.5 87.9
Total (65+ years) 13.9 53.6 15.4 56.3

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations.

Source: 2006 Census customised tables

4.2 Housing tenure, income and employment of ageing parent carers

Housing tenure has a significant effect on the financial security of families in which parents are caring for an adult child with a disability, especially those with ageing parent carers.

Table 5 shows the housing tenure status in 2006 of parent carers aged 65 years and older in Victoria by age and gender, while Table 6 depicts the weekly family income of these parents. (Given that the trends between Victoria and the nation as a whole were similar, the tables on housing tenure and family income for Australia are presented in the Appendix in Tables A2 and A3).

Table 5: Housing tenure status of ageing parent carers,a Victoria, by age and gender, 2006
Age Fully owned (%) Purchasing (%) Public housing (%) Private rental (%) Other housing (%) Total (%)
Fathers
65-69 years 77.3 14.2 2.5 5.5 0.5 100.0
70-74 years 82.3 9.3 2.9 3.8 1.6 100.0
75-79 years 88.0 5.5 2.5 4.0 0.0 100.0
80-84 years 84.6 6.0 1.5 5.0 3.0 100.0
85+ years 87.1 5.4 4.3 3.2 0.0 100.0
Total (65+ years) 81.9 10.0 2.6 4.6 0.9 100.0
Mothers
65-69 years 75.9 11.7 4.7 6.9 0.9 100.0
70-74 years 78.3 8.7 6.4 5.7 0.9 100.0
75-79 years 84.2 6.1 4.2 4.9 0.6 100.0
80-84 years 78.7 7.6 7.3 4.6 1.8 100.0
85+ years 69.7 9.0 7.5 11.9 2.0 100.0
Total (65+ years) 77.9 9.2 5.6 6.3 1.0 100.0

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations. Excludes those whose housing tenure was not stated (3% of fathers and 4% of mothers). Percentages may not total exactly 100.0% due to rounding. See Appendix Table A2 for data relating to Australia as a whole.

Source: 2006 Census customised tables

The majority of ageing parent carers in Victoria owned their home outright in 2006 (82% of fathers and 78% of mothers); a substantial minority were paying a mortgage for their own homes (10% of father carers and 9% of mothers); and small proportions were either in public housing (3% of fathers and 6% mothers) or in private rental (5% of fathers and 6% of mothers). Beer and Faulkner (2009) found that people with a disability under 65 years of age, and their families, were more likely than other home purchasers to experience mortgage stress because they tend to have a low income. The authors also noted that people with a disability who are in the rental market spend a higher proportion of their income (commonly income support payments) on housing than other renters. Despite wanting to own their own home, many find it harder to enter the housing market than others. While Beer and Faulkner focused on people under 65 years, we would expect that a proportion of parent carers aged 65 years and over who are paying a mortgage or private rental accommodation would also experience mortgage stress or difficulty in meeting housing costs. The high rates of home ownership of currently older carers (Table 5) reflect the fact that they purchased their home when housing was generally more affordable. Since the 1970s, housing affordability and home ownership rates have gradually declined (Yates, 2007), making it harder for younger parent carers to own their own home, which may, in turn, cause difficulties in meeting housing costs in the future.

Table 6 shows that one in ten father carers and nearly two in ten mother carers had weekly family incomes of less than $500 in 2006. It is not surprising that mother carers had less family income than father carers, given that they were more likely than fathers to be single (un-partnered). It is also evident in Table 6 that the older the parent carer, the lower their family income. For example, 15% of mother carers aged 65-59 years were on family incomes of less than $500 per week, while the proportion was 23% for mother carers aged 85 years and older.

Table 6: Weekly family income of ageing parent carers,a Victoria, by age and gender, 2006
Age < $500
(%)
$500-999
(%)
$1,000-1,699
(%)
$1,700+
(%)
Total
(%)
Fathers
65-69 years 9.2 45.9 30.0 14.9 100.0
70-74 years 10.7 54.5 23.4 11.4 100.0
75-79 years 10.8 61.2 20.8 7.1 100.0
80-84 years 8.7 56.4 25.6 9.2 100.0
85+ years 25.0 48.9 22.7 3.4 100.0
Total (65+ years) 10.6 52.4 25.7 11.4 100.0
Mothers
65-69 years 15.4 52.2 23.7 8.7 100.0
70-74 years 18.0 56.3 19.1 6.6 100.0
75-79 years 21.6 54.7 19.4 4.2 100.0
80-84 years 19.6 60.9 14.1 5.4 100.0
85+ years 23.0 59.4 15.5 2.1 100.0
Total (65+ years) 18.4 55.4 19.9 6.4 100.0

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations. Excludes those whose family income was not stated (10% of fathers and 10% of mothers). Percentages may not total exactly 100.0% due to rounding. See Appendix Table A3 for data relating to Australia as a whole.

Source: 2006 Census customised tables

The majority of people aged 65 years and over are retired and only a small proportion are in paid work. Nevertheless, over the last decade, an increasing proportion of people over 65 years have remained in employment (Hayes, Qu, & Weston, 2011). Table 7 shows that 15% of father carers and 6% of mother carers aged 65 years and over were employed in Victoria in 2006 (similar proportions were also evident for Australia). However, the proportions of parent carers in Victoria who were in paid work declined sharply with increasing age, from 27% of father carers aged 65-69 years, to less than 10% in older age groups, and from 10% of mother carers aged 65-69 years, to less than 5% in older age groups.

Table 7: Ageing parent carersa who were employed, Victoria and Australia, by age and gender, 2006
Age Victoria Australia
Fathers (%) Mothers (%) Fathers (%) Mothers (%)
65-69 years 26.8 9.6 24.7 9.6
70-74 years 9.0 5.3 9.7 4.9
75-79 years 6.3 3.2 6.3 2.4
80-84 years 5.1 1.2 3.4 1.4
85+ years 3.2 3.5 6.7 4.2
Total (65+ years) 14.9 5.8 14.2 5.5

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations. Excludes those whose family income was not stated (4% of fathers and 5% of mothers in Victoria; 4% of fathers and mothers in Australia).

Source: 2006 Census customised tables

4.3 Ageing parent carers with a disability

Some ageing parents who are living with adult children with a more severe disability may actually need assistance with core activities themselves.3Table 8 shows that 23% of ageing father carers and 31% of ageing mother carers in Victoria needed assistance themselves with core activities. These were similar to the proportions nationally. Understandably, the proportions with such needs increased with age, from 15% of father carers and 16% of mother carers aged 65-69 years in Victoria, to 68% and 71% respectively of those aged at least 85 years. In some instances, ageing parent carers may both receive assistance from their adult children with a disability and provide care to those adult children. In other circumstances, parents are obliged to continue providing support and assistance when the priority need may be for housing and support for their offspring.

Table 8: Ageing parent carersa who need assistance with core activities, Victoria and Australia, by age and gender, 2006
Age Victoria Australia
Fathers (%) Mothers (%) Fathers (%) Mothers (%)
65-69 years 15.1 16.0 13.6 14.5
70-74 years 18.5 23.0 17.6 22.1
75-79 years 29.0 40.1 25.7 37.1
80-84 years 36.6 51.3 38.5 51.3
85+ years 68.1 70.5 57.2 68.2
Total (65+ years) 23.2 31.1 21.8 30.5

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations. Excludes those whose need for assistance with core activities was not stated (4% of fathers and 5% of mothers in Victoria; 3% of fathers and 5% of mothers in Australia).

Source: 2006 Census customised tables

4.4 Summary

In summary, findings from the 2006 Census suggest that there were nearly 18,000 parent carers aged 65 years and over nationally, with nearly 5,000 in Victoria. A larger number of parent carers in Victoria (about 6,000) were approaching older age (55-64 years). More than half the mother carers aged 65 years and older were single and were likely to have sole responsibility for their adult child with a disability.

While the majority of parent carers owned their own home outright, a significant proportion were paying a mortgage or in rental accommodation. Some were likely to be experiencing housing cost distress. One in ten father carers and nearly one in five mother carers aged 65 years and older were living on family incomes of less than $500 per week and, in general, the older the parent carers, the lower their financial resources. The lower family incomes of parent carers as they age is consistent with their lower employment rates. When combined with SDAC data (2009), this suggests that caring affects parents' capacity to work and therefore their retirement incomes. Finally, between one-fifth and one-third of ageing parent carers also needed assistance with core activities themselves. Reciprocity in the care relationship is likely to exist between parents and their son or daughter with a disability.

2 For example, fewer than 30 father carers, including those who were living with a son or daughter with a milder disability, were aged 75 years and older.

3 Based on a question in the Census about whether each person needed assistance with any core activities.

5. How many people with a disability will live with their parents in the coming decades

One of the issues surrounding caring for an adult child with a disability is the ageing of their parent carers. This has implications for support service planning. This section explores the number of sons and daughters with a disability who are projected to be living with their parents in the coming decades (2010, 2020, 2030 and 2040), given the current trends and projected population. Three scenarios for both Victoria and Australia are presented, based on data from SDAC 2009 and three series of population projections by the ABS (2008): high (Series A), medium (Series B) and low projections (Series C).4 Numbers of children and adult children with a disability who would be living with their parents in the coming decades are also broken down by age (< 15 years, 15-44 years and 45+ years), which provides an indication of the growth in the numbers of ageing parent carers.

There are a several assumptions that underlie these projections. Key assumptions are that the likelihood of a person at a certain age being a child with a disability who lives with their parents (as derived from the data of SDAC 2009) remains constant in the future, and the ABS series of population projections is based on various assumptions in terms of fertility, mortality and immigration (see ABS, 2008, for details).

Table 9 shows three population growth scenarios over the next four decades (2010-40) by disability status. The number of people with a disability living with their parents in Victoria and Australia is projected to increase between 2010 and 2040. For the medium population growth scenario, the number of people with a more severe disability in Victoria will increase from 61,000 in 2010 to 76,000 in 2040, and for Australia as a whole from 249,000 to 318,000. The number of those with a milder disability is also projected to increase, from 54,000 in 2010 to 68,000 in 2040 in Victoria, and from 219,000 to 281,000 nationally.

Table 10 shows, for Victoria and Australia, the estimated growth over the next four decades in the number of people with a disability who will be living with their parents, by age group.5 For both Victoria and Australia, nearly two-thirds of those with a more severe disability and living with a parent carer will be under 15 years of age, while nearly four in ten of those with a milder disability will be under 15 years of age. The number aged 45 years of age and over with a more severe disability in Victoria is projected to be 2,200 in 2010, increasing a little to 2,900 in 2040, and the number with a milder disability is projected to increase from 4,900 to 6,700. People aged 45 years and older will of course have older parents too, and so these increases are also expected to see a rise in the number of older parents caring for an adult child into older age.

For Australia as a whole, the number of people aged 45 years and over with a more severe disability who are living with their parents is projected to increase from 8,800 in 2010 to 12,100 in 2040 and the number in this age group with a milder disability is projected to increase from 20,000 to 27,500 over this period. While these increases are smaller than the projected increases in the number of younger people with a milder disability who are living with their parents, the effect that this has on older parent carers should not be underestimated.

Table 9: Population growth scenarios for people with disability who live with their parents, Victoria and Australia, by disability status, 2010-40

Year

Victoria

Australia

More severe disabilitya Milder disabilityb All More severe disabilitya Milder disabilityb All
High population growth scenario      
2010 61,000 54,000 114,000 250,000 220,000 470,000
2020 69,000 60,000 129,000 291,000 249,000 539,000
2030 79,000 68,000 147,000 336,000 286,000 622,000
2040 86,000 75,000 161,000 370,000 321,000 692,000
Medium population growth scenario      
2010 61,000 54,000 114,000 249,000 219,000 468,000
2020 67,000 58,000 125,000 275,000 240,000 515,000
2030 72,000 63,000 136,000 299,000 262,000 561,000
2040 76,000 68,000 144,000 318,000 281,000 598,000
Low population growth scenario      
2010 60,000 54,000 114,000 248,000 218,000 466,000
2020 64,000 57,000 122,000 261,000 231,000 491,000
2030 66,000 59,000 125,000 264,000 238,000 502,000
2040 67,000 61,000 128,000 269,000 243,000 512,000

Notes: a People with profound or severe core activity limitations. b People with moderate or mild core activity limitations, or with an education or employment restriction. See Appendix Table A4 for confidence intervals for these data. The sum of the row cells may differ from the total due to rounding.

Source: SDAC 2009 and ABS (2008) population projections

Table 10: Medium population growth scenario for people with a disability who live with their parents, Victoria and Australia, by disability status and age, 2010-40

Year

More severe disability a

Milder disability b

< 15 years 15-44 years 45+ years Total < 15 years 15-44 years 45+ years Total
Victoria        
2010 38,500 19,800 2,200 60,500 19,800 29,000 4,900 53,700
2020 43,300 21,100 2,400 66,800 22,300 30,700 5,500 58,500
2030 46,500 23,000 2,600 72,100 24,100 33,400 6,000 63,400
2040 48,700 24,500 2,900 76,100 25,200 35,700 6,700 67,600
Australia        
2010 160,200 79,800 8,800 248,800 82,900 116,400 20,000 219,300
2020 179,700 85,900 9,900 275,500 92,800 124,700 22,400 239,900
2030 194,400 93,900 10,800 299,100 100,800 136,400 24,500 261,700
2040 205,200 100,600 12,100 317,900 106,600 146,500 27,500 280,600

Notes: a People with profound or severe core activity limitations. b People with moderate or mild core activity limitations, or with an education or employment restriction. The sum of the row cells may differ from the Total due to rounding.

Source: SDAC 2009 and ABS (2008) population projections (Series B)

4 This estimation uses what is known as a cell-based model (also referred to as a group projection or actuarial model). In this type of model, the unit of analysis is a group of people defined by a set of characteristics (in this case, age). The projection model operates by applying average probabilities of an "event happening" to the groups defined by each cell (Percival & Kelly, 2004). This type of modelling has been used quite widely in Australia; for example, Percival and Kelly used a cell-based model to project the future demand for and supply of informal carers of older persons in Australia, and the AIHW (2004) used it to project future numbers of people requiring informal care. It has also been used in other countries, such as Britain (e.g., Wittenberg, Pickard, Comas-Herera, Daies, & Darton, 1998, 2001).

5 Estimates are based on the ABS (2008) B Series (medium) population projections.

6. Conclusions

This paper examined the characteristics of people with a disability who live with their parents, the nature of their disabling conditions, and the characteristics of their parent carers (especially ageing parent carers). The number of people with a disability who will be living with their parents in the coming decades was also explored.

According to the SDAC 2009, there were 60,000 parent carers living with a son or daughter with a disability who were over the age of 65 years. While the majority of sons and daughters with a disability living with their parents were under the age of 15 years, some were well into adulthood, with 12% being 35 years and older. Those with a milder disability who were living with their parents had a significantly older age profile. A consequence of this is that those with a milder disability are more likely to have an ageing parent looking after them.

Nearly one in ten father and mother carers were aged 65 years and older, and 14% of father carers and 10% of mother carers were approaching old age (55-64 years). Some parents may have had to relinquish their caring responsibility for their son or daughter with a disability due to their own old age or other reasons, such as poor health. Indeed, one-fifth to one-third of parent carers aged 65 years and older needed assistance with core activities themselves, though it is likely that a reciprocal care relationship existed between these parents and their son or daughter with a disability.

Consistent with prior research findings that caring for a person with a disability affects participation rates in paid employment (e.g., Bittman, Hill & Thomson, 2007; Gray & Edwards, 2009), this paper showed that having caring responsibilities affected mother carers' labour force participation. It is also not surprising that parent carers, especially older parent carers, were more likely than others to have a low personal income. In particular, mother carers are disadvantaged in relation to financial provision for their own retirement.

Information on housing was also provided here because home ownership provides financial security to families. In the context of an ageing parent carer looking after their adult child with a disability, home ownership is even more important. While the majority of parent carers over 65 years of age owned their own home, a substantial minority were in other housing situations: purchasing, public housing, and private rental. Should these parents no longer be able to take care of their adult children with a disability or die, their children would not only require formal care, but also housing, and many can be expected to have limited financial means to obtain such supports.6 It is also worth noting that at least half of the mother carers aged 65 years or more were sole mothers, and other research has suggested that sole mothers are a particularly disadvantaged group (e.g., ABS, 2007; Whiteford, 2009).

This paper also explored future scenarios in terms of the number of people with a disability who will be living with a parent carer in coming decades. The projections suggest that the number will increase over time. The number of adult children with a disability who are cared for by their parents and aged 45 years and over will also rise, although the increases in this age group will be smaller. This means that there will be an accompanying increase in ageing parent carers in the future. This is consistent with the increasing number of primary parent carers reported by SDAC in 2003 and 2009.

In providing care for their adult children with a disability, older carers provide an important service to the community that saves a huge amount of public resources. Findings from this paper suggest that providing care for a son or daughter with a disability is not without cost to the carers, with some carers having lower levels of employment and financial resources, and poorer health and wellbeing. Many care for their adult son or daughter for a lifetime. It is important to recognise the contributions that these parent carers have made, and provide them with better support and services.

6 People with a disability are less likely to be in the labour force, and many rely on income support payments.

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Appendix
Table A1: Main conditions of people with a disability who live with their parents, by disability status, 2009
  More severe disability (%) Milder disability (%) All (%)
Blackouts, fits or loss of consciousness 6.8 4.7 5.8
Chronic or recurrent pain or discomfort 7.8 14.7 11.0
Difficulty gripping or holding things 12.7 3.8 8.6
Difficulty learning or understanding things 65.5 40.4 53.9
Disfigurement or deformity 6.5 4.7 5.7
Limited use of arms and/or fingers 6.9 2.6 4.9
Limited use of legs or feet 9.8 3.1 6.7
Loss of hearing 8.5 7.4 8.0
Loss of sight 4.2 2.6 3.5
Mental illness 27.6 4.3 16.7
Nervous or emotional condition 16.8 17.5 17.1
Restriction in physical activities or in doing physical work 24.2 18.7 21.6
Shortness of breath or difficulty breathing 12.7 12.6 12.7
Speech difficulties 41.0 8.0 25.7
No. of observations 707 611 1,318

Notes: Participants could provide multiple responses, so percentage totals may exceed 100%.

Source: SDAC 2009

Table A2: Housing tenure status of ageing parent carers,a Australia, by age and gender, 2006
Age Fully owned (%) Purchasing (%) Public housing (%) Private rental (%) Other housing (%) Total (%)
Fathers
60-64 years 62.4 24.5 5.0 7.3 0.8 100.0
65-69 years 74.3 13.9 5.0 6.0 0.8 100.0
70-74 years 77.9 9.3 5.4 6.2 1.2 100.0
75-79 years 82.2 5.5 5.6 5.5 1.2 100.0
80-84 years 84.7 7.1 3.1 3.5 1.6 100.0
85+ years 79.5 7.6 6.8 4.6 1.5 100.0
Total (65+ years) 78.0 10.1 5.1 5.7 1.1 100.0
Mothers
60-64 years 65.7 15.8 8.5 8.9 1.0 100.0
65-69 years 72.4 11.0 7.8 7.4 1.3 100.0
70-74 years 73.7 8.2 9.1 7.6 1.4 100.0
75-79 years 77.5 6.5 8.4 6.1 1.4 100.0
80-84 years 74.3 7.2 9.3 7.0 2.2 100.0
85+ years 70.3 7.6 9.4 10.8 1.9 100.0
Total (65+ years) 73.8 8.6 8.6 7.5 1.5 100.0

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations. Excludes those whose housing tenure was not stated (3% of fathers and mothers). Percentages may not total exactly 100.0% due to rounding.

Source: 2006 Census customised tables

Table A3: Weekly family income of ageing parent carers,a Australia, by age and gender, 2006
  < $500
(%)
$500-999
(%)
$1,000-1,699
(%)
$1,700+
(%)
Total
(%)
Fathers
60-64 years 7.6 35.4 32.4 24.6 100.0
65-69 years 8.4 46.7 28.9 16.0 100.0
70-74 years 9.3 57.1 23.3 10.4 100.0
75-79 years 11.1 61.1 21.2 6.6 100.0
80-84 years 9.8 60.0 22.8 7.3 100.0
85+ years 17.5 53.1 24.3 5.1 100.0
Total (65+ years) 9.8 53.9 25.1 11.3 100.0
Mothers
60-64 years 13.0 45.8 26.2 15.0 100.0
65-69 years 15.2 53.5 22.0 9.3 100.0
70-74 years 17.9 56.4 19.4 6.3 100.0
75-79 years 18.9 59.0 17.5 4.7 100.0
80-84 years 20.6 59.8 15.8 3.8 100.0
85+ years 23.8 57.3 14.5 4.4 100.0
Total (65+ years) 18.1 56.4 19.0 6.4 100.0

Note: a Parent carers living with a son or daughter with profound or severe core activity limitations. Excludes those whose family income was not stated (9% of fathers and mothers). Percentages may not total exactly 100.0% due to rounding.

Source: 2006 Census customised tables

Table A4 (part 1): Confidence intervals of population growth scenarios for people with a disability living with their parents, Victoria, by disability status, 2010-40

 

More severe disability a, c

Milder disability b, c

Lower limit Upper limit Lower limit Upper limit
High population growth scenario      
2010 47,496 79,564 39,930 74,976
2020 54,438 91,104 44,298 83,869
2030 62,087 103,363 50,291 94,891
2040 67,385 112,499 55,626 104,844
Medium population growth scenario      
2010 47,376 79,371 39,860 74,854
2020 52,336 87,885 43,271 82,067
2030 56,476 94,935 46,949 89,249
2040 59,490 10,0351 49,943 95,190
Low population growth scenario      
2010 47,276 79,213 39,811 74,770
2020 50,350 84,884 42,345 80,480
2030 51,247 87,174 43,855 84,156
2040 52,322 89,445 44,755 86,581

Notes: a People with profound or severe core activity limitations. b People with moderate or mild core activity limitations, or with an education or employment restriction. c The confidence interval is derived by applying to population projections the 95% confidence interval of the age-specific rate of children with a disability who live with their parents.

Source: SDAC 2009 and ABS (2008) population projections (Series B)

Table A4 (part 2): Confidence intervals of population growth scenarios for people with a disability living with their parents, Australia, by disability status, 2010-40

 

More severe disability a, c

Milder disability b, c

Lower limit Upper limit Lower limit Upper limit
High population growth scenario      
2010 196,183 327,293 163,680 306,536
2020 228,170 380,645 184,567 348,639
2030 264,563 438,968 212,824 400,620
2040 291,393 484,686 238,826 448,957
Medium population growth scenario      
2010 195,206 325,691 162,988 305,293
2020 216,013 361,652 177,786 336,443
2030 234,567 393,095 193,853 367,777
2040 248,980 418,494 207,625 394,782
Low population growth scenario      
2010 194,215 324,068 162,296 304,049
2020 203,985 342,929 171,024 324,390
2030 206,090 349,656 175,559 336,406
2040 209,822 357,514 178,412 344,492

Notes: a People with profound or severe core activity limitations. b People with moderate or mild core activity limitations, or with an education or employment restriction. c The confidence interval is derived by applying to population projections the 95% confidence interval of the age-specific rate of children with a disability who live with their parents.

Source: SDAC 2009 and ABS (2008) population projections (Series B)

Lists of tables and figures

List of tables

Table 1: Age distribution of people with a disability who were living with their parents, by disability status, 2009

Table 2: Age distribution of parent carers, 2009

Table 3: Ageing parent carers in Victoria and Australia, by age and gender, 2006

Table 4: Ageing parent carers without a partner, Victoria and Australia, by age and gender, 2006

Table 5: Housing tenure status of ageing parent carers, Victoria, by age and gender, 2006

Table 6: Weekly family income of ageing parent carers, Victoria, by age and gender, 2006

Table 7: Ageing parent carers who were employed, Victoria and Australia, by age and gender, 2006

Table 8: Ageing parent carers who need assistance with core activities, Victoria and Australia, by age and gender, 2006

Table 9: Population growth scenarios for people with disability who live with their parents, Victoria and Australia, by disability status, 2010-40

Table 10: Medium population growth scenario for people with a disability who live with their parents, Victoria and Australia, by disability status and age, 2010-40

Table A1: People with a disability who live with their parents: Problems caused by main conditions, 2009

Table A2: Housing tenure status of ageing parent carers, Australia, by age and gender, 2006

Table A3: Weekly family income of ageing parent carers, Australia, by age and gender, 2006

Table A4 (Part 1): Confidence intervals of population growth scenarios for people with a disability living with their parents, Victoria, by disability status, 2010-40

Table A4 (Part 2): Confidence intervals of population growth scenarios for people with a disability living with their parents, Australia, by disability status, 2010-40

List of figures

Figure 1: Female employment rates, by age and mother carer status, 2009

Acknowledgements

Dr Lixia Qu is a Senior Research Fellow and Dr Ben Edwards was the Executive Manager of the Longitudinal Study of Australian Children at the Australian Institute of Family Studies at the time of writing. Professor Matthew Gray is Professor of Public Policy at the Australian National University.


The research reported in this paper was commissioned by Carers Victoria. We are grateful for comments and advice from Carers Victoria staff, especially Gill Pierce and Emma Collin. We wish to thank David de Vaus for commenting on earlier draft and Lan Wang, the Institute’s Publishing Manager, for both editing and polishing this work. The views expressed in this paper are those of the authors and may not reflect those of the Australian Institute of Family Studies, the Australian Government or Carers Victoria.

Publication details

Report
Published by the Australian Institute of Family Studies, October 2012
17 pp.
ISBN:
978-1-921414-92-3
Suggested citation:

Qu, L., Edwards, B., & Gray, M. (2012). Ageing parent carers of people with a disability. Melbourne: Australian Institute of Family Studies.

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