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Supporting families where one or both parents have an intellectual disability can be a major challenge for practitioners in health, education and welfare. There are no exact figures on the number of families headed by a parent with an intellectual disability, however, a ‘best guess’ estimate based on information from the Australian Bureau of Statistics is 1–2 per cent of Australian families with children aged birth to 17 years.
Intellectual disability does not automatically result in parental inadequacy and does not inevitably result in child neglect or abuse (Feldman, 1994). However, Australian research has shown that parents with an intellectual disability are disproportionately represented in child protection services and care proceedings. Researchers in other countries have also reported high rates of child removal from the family home when a parent has an intellectual disability.
The reasons for this are complex, but there are three factors which may explain this trend:
- the assumptions and beliefs people have about disability;
- the high levels of disadvantages faced by these families; and
- gaps in effective services, support and resources for these families.
Assumptions
As practitioners, how we view people with an intellectual disability influences how we work with them. Disability is a concept that is socially constructed and there are certain preconceptions about it. For example, there is a widely held assumption across the community that low intelligence means parental incompetence. Practitioners often report being concerned about the consequences when people with an intellectual disability become parents, presuming that such parents will not be able to provide the physical, social and emotional stimulation that children need to develop ‘normally’.
Failure to recognise the strengths of a family affects the way we provide support to them. Believing that a parent does not have the capacity to learn can result in practitioners giving them few opportunities to learn new things. For example, by assuming that a parent cannot learn to check the temperature of a sick child, the parent may never be given the opportunity to learn how to check temperature. If we believe parents can learn and do new things, we will then provide opportunities for them to develop skills they need in their parenting role.
Disadvantage
A productive way to think about parents with an intellectual disability is to consider the disadvantage they face, rather than focusing on their disability.
Disadvantages include:
- poverty, unemployment, substandard housing, high stress levels, a history of maltreatment, depression and poor self-esteem
- poor health. A recent Australian study conducted with a small sample of mothers with an intellectual disability reported significantly poorer health than mothers without disability
- lack of positive parenting role models
- limited learning opportunities. In our community, most parents have access to written material on parenting. Parents with an intellectual disability often have great difficulty getting hold of, understanding and applying such information
- limited informal supports. Most parents have family and friends that they can turn for reassurance, practical help and advice. Parents with intellectual disability are often isolated and experience little social support
- limited formal supports. When problems arise, most parents can obtain professional supports and services. These services are not well-equipped—in terms of training or resources—to accommodate the learning needs of parents with intellectual disability.
Importantly, such disadvantage is often associated with chaotic living circumstances that can bring families to the attention of the child protection system.
Support, services and resource gaps
Researchers have identified features of the service system that may weaken, rather than strengthen, parents’ beliefs that they are doing a good job of parenting. These include a lack of continuity of service delivery, failure to involve parents in decisions that affect them and their family, and practices that are not based on what we know works for these families.
Supportive approaches in practice—a case study
Susan Rogers, a psychologist at the Victorian Parenting Centre, has seen firsthand how effective these supportive approaches can be for parents with learning difficulties. Susan was able to adapt the parenting program so that several parenting strategies, such as praise and setting up play activities, were taught using visual prompt cards, modelling and role-play instead of the traditional workbook approach. Susan was also able to link the family up with their local cub scouts organisation to give the family the opportunity meet with other families.
Research has shown that by using teaching methods matched to their learning needs, parents with an intellectual disability do learn, retain and use parenting skills. Critical elements for developing effective parenting skills include:
- Teaching and learning in the setting in which the skills are needed—most often this is the family home.
- The focus of programs needs to be on parents demonstrating skills, rather than just talking about them.
- The most effective teaching strategies involve breaking complex tasks down into small steps, giving clear instructions, demonstrating the skill, giving concrete examples from the parent’s everyday life, providing immediate feedback, prompting, lots of practice, and plenty of positive feedback.
- A range of teaching aides (such as pictorial manuals, photographs, audio tape, videotape) assist learning when used in conjunction with face-to-face teaching.
- The program is flexible, long-term, and plans for the skills to be used. Parents are more likely to use their new skills if practitioners teach them in the home, use everyday interactions that parents have with children as teaching opportunities, and teach multiple examples of the same skill or concept.
Skills for real settings
As well as best practice parent education, attention should be paid to the context in which parents are expected to use their skills. Even programs that are well-planned, based on best practice and rigorously implemented, may have limited success if this is not done. The disadvantage that many parents with an intellectual disability experience can act as a barrier to applying the parenting skills they have recently learnt.
There is now a strong body of research that shows the benefits of providing parent skills education in conjunction with other family-focused support—known as supportive contextual interventions. This also helps parents overcome obstacles to effective parenting. An example of a supportive contextual intervention is to teach budgeting or problem-solving skills to a financially overstretched parent, in conjunction with teaching specific child care skills that will provide for their child’s immediate needs. Another example is when practitioners devise strategies that promote access to community-based support networks for parents with an intellectual disability. While providing social support is not sufficient to enable a parent to learn new skills, it may be one of the most effective ways of ensuring that parents have the opportunities to develop skills which—once acquired—will be used, maintained and generalised to new situations.
Robyn Mildon
Project Coordinator, Victorian Parenting Centre
Catherine Wade
Development Officer, Victorian Parenting Centre
Jan Matthews
Deputy Director, Victorian Parenting Centre
Reference
Feldman, M. (1994). Parenting education for parents with intellectual disabilities: A review of outcome studies. Research in Developmental Disabilities, 15(4).
The Victorian Parenting Centre and the University of Sydney are currently implementing an Australia-wide initiative, Healthy Start, to support parents with learning difficulties and promote a healthy start to life for their young children. For more information please visit www.healthystart.net.au.
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