Parents With Intellectual Disability and Their Children: Advances in Policy and Practice

Authors


  • Note: This article is drawn from one of a series of invited addresses presented at the Asia-Pacific IASIDD 3rd Regional Conference in Tokyo, Japan, July 22–24, 2013. Professor Llewellyn is a professor of Family and Disability Studies within the Faculty of Health Sciences at the University of Sydney, Sydney, Australia, the director of the Centre for Disability Research and Policy, the director of the Australian Family and Disability Studies Research Collaboration, the director of the WHO Collaborating Centre for Health Workforce Development in Rehabilitation and Long Term Care, and the codirector of the Australian Supported Parenting Consortium. The author wishes to acknowledge the Australian Government's Department of Families, Housing, Community Services and Indigenous Affairs support in funding “Healthy Start. A National Strategy for Children of Parents with Learning Difficulties” for the period 2005–14.

Correspondence: Gwynnyth Llewellyn, Faculty of Health Sciences, University of Sydney, P.O. Box 170, Lidcombe, NSW 1825, Australia. Tel: +61 2 93519985; E-mail: gwynnyth.llewellyn@sydney.edu.au

Abstract

In many countries, women and men with intellectual disability (ID) marry and have children of their own; however, in some countries, this is still taboo. Reproduction and parenting by people with ID is often a “hot” topic. Important questions related to this phenomenon include: Can people with ID provide “good enough” parenting? Can they be taught to be good parents? What about their children; should their children be taken away and cared for by someone else? Issues concerning healthcare that can support parenting, together with what supports are necessary for people to exercise the right to retain their fertility and to have their own family bear examination. In the Asia-Pacific region, an expanding focus on disability rights, deinstitutionalization, and inclusive policies means that there are more opportunities for people with ID to become parents. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the Incheon Strategy to “Make the Right Real” for Persons with Disabilities in Asia and the Pacific region both address these issues. Both promote disability-inclusive policies and practices derived from a rights-based framework; the right to reproduction is viewed as a fundamental human right and individual freedom. However, parenting rights and responsibilities are governed by cultural mores and societal traditions. Research primarily from high-income countries across the last four decades demonstrates that most parents with ID can provide sufficiently good parenting when appropriate supports are in place. Research on this topic to advance policy and practice needs to happen in specific national, geographical, cultural, and societal contexts. Furthermore, policy development is required to meet the goals and targets of the Incheon Strategy. Regional networks and national organizations of and for people with disabilities are challenged to include reproductive care and parenting programs in their policy and advocacy work.

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