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Debunking the disability myths

Harmful stereotypes about parents with learning difficulties can profoundly impact how support is provided and received, writes Rachel Mayes.

For the majority of women without disabilities, discovering they are pregnant and embarking on the journey to motherhood is an exciting time. In contrast, a large proportion of women with learning difficulties face opposition from family, friends and professionals when they become mothers.

It is estimated that 1 to 2 per cent of families with children under 17 are headed by a parent with a learning difficulty. A great number of the concerns raised about these parents are based on myth, rather than fact.

Some of these include: that they will have significantly more children than other parents; that all children of parents with learning difficulties will have disabilities themselves; or that they will inevitably provide inadequate care for their children.

In fact, decades of research evidence suggests that with adequate support, many parents with learning difficulties can and do provide their children with the care and nurture they require. Further, people with learning difficulties can learn and apply parenting skills to appropriately care for their children.

Myths and stigma often influence how support is provided and received. Parents with learning difficulties are a diverse group, with different abilities, and support needs. The myths surrounding this group of parents can profoundly impact how they are supported by the services they seek, or whether they seek assistance at all.

For instance, the difficulties parents face caring for their children may be immediately attributed to their learning difficulty, without regard for the social or environmental factors that might contribute. If parents feel threatened or judged by professionals they may avoid seeking support, which could lead to increased risk for them and their children.

Parents’ social context also affects their ability to learn parenting skills. As for all families, factors such as number of children in the family, income level, health of family members, and availability of appropriate family and community supports that take into account parents’ particular learning needs can contribute to successful parenting or parenting difficulty.

Just like other families, the effectiveness of support provided to parents with learning difficulties will be enhanced when practitioners carefully inquire about and consider parents’ social and environmental situation.

A parent’s learning difficulties also impacts on how they learn parenting skills, and this will vary from parent to parent. Some of the ways in which learning difficulties might impact a parent’s learning include limited flexibility in applying skills or principles: for example, parents may have difficulty adapting the amount of formula to feed a growing baby; difficulties following complex instructions; problems with short- and long-term memory; low literacy, or difficulties recognising and responding appropriately to a child’s cues.

When providing support for parents with learning difficulties practitioners need to consider how a parent learns and modify their practice accordingly. Some examples include being aware of parents’ literacy levels; simplifying explanations; breaking new skills down into manageable components, and demonstrating, rather than explaining, how they are done; allowing plenty of opportunity for repetition and reinforcement, ideally by giving parents opportunities to practise skills in the environments they will be needed.

Sometimes parents may agree with professionals or say “yes” to questions, regardless of what is asked. Known as acquiescence, this may occur if a parent doesn’t understand the question, if the question is too complex, if they do not understand what kind of answer is required, or cannot recall the information that would help them answer the question. Checking for parents’ understanding will help ensure that professionals understand their needs and the supports they require and that parents have correctly understood the information given.

To check for understanding: use either/or, rather than yes/no questions; give parents the option of saying, “I don’t know” and tell them it is OK to say this; keep questions short and simple; avoid questions that are too detailed or complex; ask the parent to explain the information just given in their own words; and ask for examples to illustrate a comment.

Working with parents with learning difficulties can require professionals to adapt their usual methods of practice to ensure that the support they provide is both well received and effective to assist parents’ care for their children. Research in the field now spans more than six decades, and much has been learnt about effective methods of supporting these parents and their children.

Healthy Start is a national capacity building strategy and the first of its kind internationally, which aims to improve the health and wellbeing outcomes of the children of parents with learning difficulties.

Nurses, educators and managers can access best-practice information, summaries of latest research, and evidence-based programs through the website. The online Practice Network also provides a place to exchange knowledge, ideas and resources with other professionals from a variety of disciplines.

Of particular interest to midwifery nursing, is an antenatal resource, Me and My Baby, that promotes the health and wellbeing of women with learning difficulties through pregnancy and childbirth.

Rachel Mayes is a Faculty of Health Sciences research fellow at the University of Sydney. She sits on the advisory council of a non-government service for people with intellectual disability and is the author of the book Becoming Mother: The experiences of women with intellectual disabilities. For more information visit www.healthystart.net.au

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