Practices that support parenting by parents with intellectual disability
Susan Collings, Margaret Spencer
This is the first in a series of short articles focusing on disability in Australia, including best practice evidence for particular areas of policy and practice. This article discusses the challenges and support needs of parents with intellectual disability in Australia and looks at best practice and policy responses.
Parents with intellectual disability in Australia
Parents with intellectual disability are conservatively estimated to be 1% of the Australian parent population.1 Not all identify with or wish to be defined by the label of intellectual disability; and as a diverse group, they bring different capabilities, limitations and strategies to parenting. Through international collaborations and Australian Government funded programs, evidence is emerging on how best to ensure positive outcomes for parents with intellectual disability and their children.2 This short article outlines the evidence on the challenges of Australian parents with intellectual disability and highlights what works to support these families.
What are the challenges of parents with intellectual disability?
Research has consistently shown it is not intellectual disability itself that impacts negatively on parenting capacity, but social conditions and beliefs that devalue people with disability.3 All parents need access to material, social and emotional resources to ensure their children thrive; as these are the factors that influence child outcomes.4
Parents with intellectual disability face the challenges of a lack of accessible information, poor early engagement by services and lack of cross-agency collaboration.5 Without a mainstream child and family workforce that is disability-aware and skilled, parental behaviours and capabilities can be misinterpreted and critical support needs missed.6 Fear of judgement and dissatisfaction with available support also reduces help seeking by parents with intellectual disability. 7 As a result, these families often come to the attention of professionals when they are in crisis. 8 situation is compounded by the inability of siloed service systems to respond to complex and interacting needs.9 Parents with intellectual disability then receive differential treatment; parenting capacity is often questioned, and resources are not invested in keeping families together.10,11
What works to support these families?
To effectively engage with these families, practitioners need to feel competent, confident and adequately resourced.12 Studies show parents with intellectual disability value support that is strengths-based, prioritises what they see as important and provides opportunities to learn on their own terms.13,14 Relationship-based practice approaches that do not blame parents for structural and social problems are essential for working with these and other vulnerable families.15
Based on this research, the following key principles of good practice have been identified:
- Become disability aware: Understanding the social model of disability is key to working effectively with parents with intellectual disability. Seek out information from credible experts, challenge personal assumptions and create communities of practice.
- Establish safety: Being honest with parents and expressing confidence in them establishes a safe base for engagement.16 Gaining trust means addressing issues they perceive as relevant and achievable rather than imposing your own priorities. Signs of disengagement need a prompt and constructive response.
- Get to know the parent as a person: Be curious and actively listen to what the parent says about how they learn best and their support preferences.17 Parenting education for these parents works best when it is viewed as worthwhile, is incremental, occurs in the home environment and includes opportunities to practice and receive feedback.18
- Foster professional collaborations: The needs of parents with intellectual disability and their children cannot be effectively met by one agency or discipline alone and working with them takes long-term, proactive, multiagency approaches.
- Facilitate family wellbeing: A family-centred approach19 means working on the most practical and urgent issues for the family. This may include dealing with debt, housing, family violence or illness. Helping these families access health care and disability support can promote wellbeing.
- Help to create a community of support: Many parents with intellectual disability need practical help to create a supportive community around their family.20 Locate options for peer support or engagement in social activities that boost friendship networks. Promote child care and playgroups for younger children; and sport, homework clubs or holiday camps for older children.21
International research collaborations and communities of practice are contributing to emerging evidence on best practice for professionals working to successfully support parents with intellectual disability and their children. Professionals who are committed to promoting the human rights of parents with intellectual disability and who are skilled and resourced to implement good practice are the key to seeing positive outcomes for these parents and their children.
How will you use the evidence or information in this short article in your work? We would love to hear from you in the Comments field below.
Further reading and resources
- We are a Family
In this Intellectual Disability Rights Service video, three families where one or both parents have intellectual disability describe what family life means to them.
- We’ve Got This: Parenting with a Disability
This ABC Radio National Life Matters series provides insight into the complexities of parenting with disability.
- The Bumpy Road
This website provides accessible resources to assist parents with intellectual disability navigate the child protection system. The resources have been created by parents with experience of the system in New South Wales.
1 Man, N. W., Wade, C., & Llewellyn, G. (2017). Prevalence of parents with intellectual disability in Australia. Journal of Intellectual & Developmental Disability, 42(2), 173–179.
2 Feldman, M. A., & Aunos, M. (2020). Recent trends and future directions in research regarding parents with intellectual and developmental disabilities. Current Developmental Disorders Reports, 1–9.
3 McConnell, D. (2008). Parents labelled with intellectual disability: Position of the IASSID SIRD on parents and parenting with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 21(4), 296–307.
4 Hindmarsh, G., Llewellyn, G., & Emerson, E. (2017). The social‐emotional well‐being of children of mothers with intellectual impairment: A population‐based analysis. Journal of Applied Research in Intellectual Disabilities, 30(3), 469–481.
5 MacIntyre, G., Stewart, A., & McGregor, S. (2019). The double‐edged sword of vulnerability: Explaining the persistent challenges for practitioners in supporting parents with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 32(6), 1523–1534.
6 Slayter, E. M., & Jensen, J. (2019). Parents with intellectual disabilities in the child protection system. Children and Youth Services Review, 98, 297–304.
7 Collings, S., Grace, R., & Llewellyn, G. (2017). The role of formal support in the lives of children of mothers with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 30(3), 492–500.
8 Collings, S., Spencer, M., Dew, A., & Dowse, L. (2018). ‘She was there if I needed to talk or to try and get my point across’: Specialist advocacy for parents with intellectual disability in the Australian child protection system. Australian Journal of Human Rights, 24(2), 162–181.
9 Collings, S., Dew, A., & Dowse, L. (2016). Support planning with people with intellectual disability and complex support needs in the Australian National Disability Insurance Scheme. Journal of Intellectual & Developmental Disability, 41(3), 272–276.
10 Proctor, S. N., & Azar, S. T. (2013). The effect of parental intellectual disability status on child protection service worker decision making. Journal of Intellectual Disability Research, 57(12), 1104–1116.
11 Retzer, A., Kaye, J., & Gray, R. (2020). A factorial survey investigating the effect of disclosing parental intellectual disability on risk assessments by children’s social workers in child safeguarding scenarios. The British Journal of Social Work, 50(4), 1185–1200.
12 Spencer, M., & Llewellyn, G. (2007). Working things out together: A collaborative approach to supporting parents with intellectual disabilities. In C. Bigby, C. Fyffe & E. Ozanne (Eds.). Planning and support for people with intellectual disabilities: Issues for case managers and other professionals (pp. 71–190). London: Jessica Kingsley.
13 Tarleton, B., & Turney, D. (2020). Understanding ‘successful practice/s’ with parents with learning difficulties when there are concerns about child neglect: The contribution of social practice theory. Child Indicators Research, 13(2), 387–409.
14 Wilson, S., McKenzie, K., Quayle, E., & Murray, G. C. (2013). The postnatal support needs of mothers with an intellectual disability. Midwifery, 29(6), 592–598.
15 Featherstone, B., Gupta, A., Morris, K., & White, S. (2018). Protecting children: A social model. Bristol: Policy Press.
16 Collings, S., Spencer, M., Dew, A., & Dowse, L. (2018). ‘She was there if I needed to talk or to try and get my point across’: Specialist advocacy for parents with intellectual disability in the Australian child protection system. Australian Journal of Human Rights, 24(2), 162–181.
17 Tarleton, B., Turney, D., Merchant, W., & Tilbury, N. (2018). Getting things changed: Successful professional practice when working with parents with learning difficulties. Bristol, UK: University of Bristol.
18 Tarleton, B., Turney, D., Merchant, W., & Tilbury, N. (2018). Getting things changed: Successful professional practice when working with parents with learning difficulties. Bristol, UK: University of Bristol.
19 Wade, C., Mildon, R., & Matthews, J. (2007). Service delivery to parents with an intellectual disability: Family-centred or professionally centred? Journal of Applied Research in Intellectual Disabilities, 20, 87–98.
20 McConnell, D., Dalziel, A., Llewellyn, G., Laidlaw, K., & Hindmarsh, G. (2009). Strengthening the social relationships of mothers with learning difficulties. British Journal of Learning Disabilities, 37(1), 66–75.
21 Spencer, M., & Llewellyn, G. (2007). Working things out together: A collaborative approach to supporting parents with intellectual disabilities. In C. Bigby, C. Fyffe & E. Ozanne (Eds.). Planning and support for people with intellectual disabilities: Issues for case managers and other professionals (pp. 71–190). London: Jessica Kingsley.