Risk status and resilience in families with parents with intellectual disability: Parents and children’s experiences, policy and public discourse (2008-2012)

Project team

Prof Gwynnyth Llewellyn
Dr Rachel Mayes
Gabrielle Hindmarsh
Dr Vikki Fraser
Susan Collings


Children of parents with intellectual disability are at greater risk of growing up with someone other than their parents than any other group in the community. International studies report up to one in three of these children will be removed from their parents’ care. Little is known about the effects this implied or real threat of removal has on the children or their parents and how this risk status is constructed in policy and public discourse.

The overall aim of this project is to identify:

  • Factors that contribute to child resilience from the children’s perspective;
  • Parental experiences in relation to the real or implied threat of child removal or risk of child removal;
  • The construction in public discourse and policy of the at risk status and vulnerability of these children and their parents.


This project comprised of three related studies utilises a qualitative design to explore children’s perspective, parental experiences in the social and cultural context of policy and public discourse.

Study 1 will address: What contributes to child vulnerability and resilience, from the children’s perspective?

Study 2 will address: What are the parents’ perceptions of daily family life in the context of three conditions; the implied threat of child removal; the real threat of child removal; and child removal?

Study 3 will address: How and to what extent are children of parents with intellectual disability and their parents portrayed in the public domain?

Anticipated outcomes

Findings will guide the design of a larger follow up study.

Related publications

Booth, T., & Booth, W. (1999). Parents Together: action research and advocacy support for parents with learning difficulties. Health & Social Care in the Community, 7(6), 464-474.

Booth, T., & Booth, W. (2005). Parents with learning difficulties in the child protection system: Experiences and perspectives. Journal of Intellectual Disabilities, 9(2), 109-129.

Llewellyn, G. (1997). Support and Services for Parents with Intellectual Disability: What? When? How? By Whom? Sydney: Family Support & Services Project, School of Occupational Therapy, Faculty of Health Sciences, University of Sydney.

Llewellyn, G., McConnell, D., Honey, A., Mayes, R., & Russo, D. (2003). Promoting health and home safety for children of parents with intellectual disability: A randomised controlled trial. Research in Developmental Disabilities, 24(6), 405-431.

Llewellyn, G., McConnell, D., & Mayes, R. (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27(1), 17-19;

Llewellyn, G., & McConnell, D. (2005). "You have to prove yourself all the time" People with learning disabilities as parents. In G. Grant, P. Goward, P. Ramcharan & M. Richardson (Eds.), Learning Disability: A life cycle approach to valuing people (pp. 441-467). Berkshire: Open University Press.