4102.0 - Australian Social Trends, 2000
ARCHIVED ISSUE Released at 11:30 AM (CANBERRA TIME) 04/07/2000
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Family Formation: Children With Parents With a Disability
Although for many people the onset of disability, particularly physical disability, is associated with the later stages of life, many young and middle aged adults also have restrictive disabilities. These people may be parents at the time of the onset of their disability, or may wish to become parents. Over the last twenty years or so, disability legislation has promoted the rights of people with disabilities. At the same time, the application of normalisation principles, de-institutionalisation, and corresponding shifts in social attitudes have decreased the barriers faced by people with a disability who want to have children.1
There are a wide range of issues faced by families in which one or both parents have a disability. These issues differ according to the life stage of the family.
When children are very young, the capacity of parents who have a disability to fully care for their children, and the adequacy and availability of specialised support services, are important issues. While a range of support services is available to people with disability in the arenas of employment and accommodation, there is a more limited range of services supporting the needs of parents with a disability.1 Disability services are typically set up to support families in which the family member with the disability is the child, not the parent.1 Parent support groups can lack the specialised equipment or training needed to cater for people with a disability and, conversely, disability support services may not be set up to provide parenting guidance.1
As children grow older, the extent to which they take on a caring role for their parents and their access to educational and other opportunities become issues. Finally, when children reach adulthood, their freedom to leave home and to begin independent lives may be affected by their parent’s disability. These issues may be compounded by the socioeconomic disadvantage sometimes faced by families in which one or more parents have a disability (for example, see Australian Social Trends 1997, Employment of people with a handicap).
This review presents data from the 1998 Survey of Disability, Ageing and Carers. It describes the extent to which there are families with children in which parents have a disability, and the numbers of children affected. It also looks briefly at the caring role played by children in such families and examines the possible effects on educational participation of young people living with a parent with a disability.
In 1998 there were 442,500 families with children aged 0-17 years (18% of all families with children aged 0-17 years) in which at least one parent had a disability that involved a specific restriction (see box). Of these, 355,900 were couple families and 86,600 were lone-parent families.
Families in which younger children were present were less likely to be families in which a parent had a disability, than those with older children. Among families with children aged 0-4 years the proportion in which a parent had a disability was 14%, compared to 22% in families with children aged 15-17 years. This age-related difference is partly because the onset of disability is more likely to occur later in life, when children in a family are likely to be older. (The disability rate among adults in 1998 increased from 9% among those aged 25-34 years to 29% of people aged 55-59 years and 33% of those aged 60-64 years).2
In total there were 843,700 children living with a parent with a disability in 1998. The proportion of children living with parents with a disability was much the same among those living with both parents (18%), as among those living with one parent (17%). Similarly, the likelihood of children aged 0-17 years living with a lone parent with a disability was much the same among children in lone-mother families, where 17% had a mother with a disability, as among children in lone-father families, where 18% had a father with a disability. However, reflecting the distribution of lone-father and lone-mother families in the general population, fewer children lived with a lone father with a disability than with a lone mother with a disability (16,300 and 130,600 respectively).
Among the 3.8 million children aged less than 18 years who were living with both parents, 7% (250,800) lived in a family where only their mother had a disability, 9% (356,400) in one where only their father had a disability and 2% (involving 89,500 children) lived in a family where both their parents had a disability.
Type and severity of disability
The issues relating to parents whose disability is the result of a physical condition can be quite different from those faced by parents whose disability results from a mental or behavioural disorder. Parents with a physical condition may have mobility and/or sensory restrictions. Their support needs may primarily revolve around equipment, communication and access issues. Parents with mental or behavioural disorders may, in contrast, be physically capable of caring for their children, but face motivational or intellectual barriers to effective parenting.1
Of those children living with a parent with a disability, 91% lived with a parent whose main condition was a physical condition, and 11% with a parent whose main condition was a mental or behavioural disorder. There were 18,800 children (2%) who lived in families where one parent had a physical disability and the other had a mental or behavioural disorder.
The likelihood of a child having a parent with a physical condition as opposed to a mental or behavioural disorder was much the same across age groups. However, a slightly higher proportion of children aged 0-4 years (14%) had a parent with a mental or behavioural disorder compared to children in older age groups (between 10% and 12%).
Another difference, in terms of the type of disability parents have, can be seen between those children living in lone-parent families, and those living in couple families. The proportion of children living in lone-parent families with a parent with a mental or behavioural disorder was substantially higher than the proportion living in couple families (17% and 10% respectively).
The severity of a parent’s disability is also likely to affect their ability to fulfil their parenting roles. Those parents with more severe conditions are also more likely to need help from others (including their children) in meeting household needs, and their own day-to-day needs.
The 1998 Survey of Disability, Ageing and Carers showed there were 247,900 children (29% of all children with a parent with a disability) who had at least one parent with a profound or severe disability. Once again there was an age-related difference: older children were more likely than younger children to have a parent with a profound or severe disability.
There were 213,200 children (31%) living in couple families in which at least one parent had a profound or severe disability. Of the 89,500 children living in couple families where both parents had a disability, there were 7,600 whose parents both had a profound or severe disability, 39,800 who had one parent with a profound or severe disability and the other with a less restrictive disability, and 42,200 whose parents both had a less than severe disability. Of children living in lone parent families, 34,700 lived with a parent with a profound or severe disability.
The 1998 Survey of Disability, Ageing and Carers obtained information about the extent to which parents with a disability received care or assistance from their children because of their disability. Although very few children under the age of 18 (fewer than 5,500) took primary responsibility for caring for their parent(s), in 1998 there were 106,400 children (13% of all children living with a parent with a disability) who provided some type of informal care for a parent, because their parent had a disability. Most of these (78%) were of high school age, that is, aged 12-17 years. This high proportion partly reflects the fact that older children were more likely to have a parent with a disability, and to have a parent with a profound or severe disability. However it would also be expected that older children would be more likely to be called on to assist parents because of their greater capacity to assist.
The care provided by children aged 12-17 ranged from help with simple tasks to more substantial care. It included direct care of the parent, for example, where the child helped their parent to move around the house, to communicate, or to shower or eat. It also included general household help, for example where the child helped their parent prepare or cook meals, write letters, check bills, vacuum, garden or make minor home repairs.
Overall, a greater proportion of children provided care in the form of general household help (25%). However, 34,000 children (10% of all children aged 12-17 years who had a parent with a disability) provided some form of direct care for their parent. The most common form of direct care given was related to assisting parents with mobility (involving activities such as getting in or out of bed or a chair or moving around the house). There were 20,200 children who provided mobility assistance to parents. The next most common form of direct care was personal care (including assisting with such activities as eating, dressing or toileting) which was provided by 17,400 children.
It might be expected that some of the life opportunities of children with parents with a disability would be affected by their parent’s disability. Adults with a disability typically have lower incomes than those without disabilities,2 and this in itself is likely to have an impact on the well-being of their children.
To the extent that at least some children are involved in caring for their parents, opportunities for participation in schooling and further education might also be affected. However, broad data from the 1998 Survey of Disability, Ageing and Carers suggests this impact might be relatively low. For example, the survey showed there was little difference in the proportions of children in the non-compulsory schooling age bracket (taken as those in the 15-17 year age range) attending school or full-time study, between those who had parents with a disability and those who did not (86% compared to 88%). However, a slightly greater difference was evident among people aged 18-24 years who were living with a parent. Only 26% of those who lived with a parent with a disability were attending full-time study, compared to 35% of those whose parents did not have a disability.
PARTICIPATION OF CHILDREN IN SCHOOL OR OTHER FULL-TIME EDUCATION, 1998
1 Lewellyn, G. 1995, 'Community services for parents with intellectual disability: specialist or generic?', in Social Policy and the Challenges of Social Change: Reports and proceedings of the National Social Policy Conference, vol. 2, Saunders, P. and Shaver, S., Social Policy Research Centre, University of New South Wales, Sydney.
2 Australian Bureau of Statistics 1