Engaging children with disability in supported decision making
Joanne Watson, Patsie Frawley
Children with disability, like all children, have the right to express themselves and to have their views heard. The human right to make decisions is enshrined in the UN Convention on the Rights of the Child (UN General Assembly, 1989) and the UN Convention on the Rights of People with Disabilities (UNPRCD) (Articles 7 and 12) (UN General Assembly, 2007). National Disability Insurance Scheme (NDIS) funded providers have an enforceable obligation under the NDIS Code of Conduct (and NDIS Practice Standards) to uphold the rights of NDIS participants to participate in decision making.
However, the Australian Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2020) has revealed the way systems have commonly failed people, including children, with disability. Central to these failures, especially in education and care, is a lack of respect for the capacity of people with disability to express their preferences or for these preferences to be heard and realised. Exercising self-determination is important not only for a child’s wellbeing and a sense of identity but also for their social and emotional development (Brown & Brown, 2009; Nota, Ferrari, Soresi, & Wehmeyer, 2007).
In this short article we outline what supported decision making is, why children with disability can and should be engaged as decision makers, and the evidence about using supported decision making to support them towards exercising this right.
What is supported decision making?
Supported decision making is an evolving practice and legislative framework. The expectation reflected in the UNCRPD is that interdependence in decision making is a valid approach to decision making for people with disability. What the support looks like will be different for different people. The key to interdependence is to understand a person’s will and preference and use this to support decision making by and with them. In the same way that a ramp can enable someone to access a physical space, supported decision making can enable someone to realise their human right to make decisions for themselves.
Why incorporate the voices of children with disability in decision making?
Self-determination in children is known to lead to greater hope and optimism for the future (Gillham, & Reivich, 2004; Petcu, Van Horn, & Shogren, 2017). Where a child is deprived of opportunities to make and shape decisions about their lives, there is a greater risk of social isolation and low self-esteem and self-confidence.
For children with disability who do not communicate using formal systems such as speech, sign language or the written word, opportunities to develop self-determination skills may be lacking. A lack of opportunity is related to low expectations in terms of the child’s ability to participate in decision making. Negative assumptions about their ability directly impacts the decision-making opportunities given to a person with disability (Watson, 2017).
What works to engage children with disability in supported decision making?
Little is known about the application of supported decision-making principles and circles of support for children; however, there is a growing interest in the area. For example, Microboards are networks of trusted people who freely give their time to support people with disability to make decisions. They are based on the principles of supported decision making and have been shown to help to maintain or improve quality of life and safety for people with disability (Bickers, 2014). Microboards have recently been used to support children. Deakin University is evaluating a project led by Microboards Australia that is building Microboards around children with disability (Watson & Dew, 2021).
Watson, Wilson, & Hagiliassis (2017) have developed a supported decision-making practice framework to guide supporters to help people with disability with their decision making. This framework incorporates five steps, each of which is carried out collaboratively:
- identifying a decision and options
- exploring options and building evidence
- making the decision and acting on it
The documentation step is embedded across all stages, and includes written documentation, photography, audio recordings and video. The framework has clear application for children within an educational context, including within the Individual Educational Planning process.
Children with disability can express their choices, will and preferences in a variety of ways. With support, these preferences can be built into choices and decisions. The role of a supporter in a child’s circle of support is to collaboratively respond to this expression of preference by acknowledging it, interpreting it and acting on it. According to Watson’s framework of supported decision making, a supporter’s role of responsiveness is best carried out when they have:
- a positive attitude about the child’s capacity to participate in decisions and communicate
- a close relationship with the child
- a deep knowledge of the child’s history and life story
- a circle of support that is collaborative and free of conflict
- an understanding of the importance of the child taking some supported risks within decision making
- a strong commitment to documentation including the use of video to ascertain the child’s preferences.
Children with disability have a human right to participate in decisions about their lives. Parents, carers, educators, families and practitioners have a clear role to play in providing the support children need to live lives that reflect their will and preference. In this article, we have reflected on the role supported decision-making mechanisms can play in the lives of children with disability. It is hoped that this brief snapshot will provide some guidance for families, allied health workers and educators in their quest to support children with disability to live self-determined lives.
Further reading and related resources
- Listening to people rarely heard
Developed by Jo Watson and Rhonda Joseph from Scope Victoria, this video is part of a training package to guide supporters of a person with severe to profound intellectual disability through a process of supported decision making.
- Map your future
Created by Youth Disability Advocacy Service, this free online program supports disabled young people to set goals and get the right support to achieve these goals.
- Microboards Australia
Microboards Australia provides a range of support and services to build the capacity of support networks to develop and maintain the life a person with disability wants.
- Shared decision making with disabled children and young people
This resource by CCS Disability Action aims to guide and strengthen practices to support those working with children and young people with disability in effective shared decision making.
- Bickers, C. (2014, December 14). Centre of His Youniverse. Sunday Times (Perth, Australia), 33. Retrieved from pressreader.com/article/282265253769788
- Brown, I., & Brown, R. (2009). Choice as an aspect of quality of life for people with intellectual disabilities. Journal of Policy & Practice in Intellectual Disabilities, 6(1), 11–18.
- Gillham, J., & Reivich, K. (2004). Cultivating optimism in childhood and adolescence. The Annals of the American Academy of Political and Social Science, 591(1), 146–163. doi:10.1177/0002716203260095
- Nota, L., Ferrari, L., Soresi, S., & Wehmeyer, M. (2007). Self-determination, social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51(11), 850–865.
- Petcu, S. D., Van Horn, M. L., & Shogren, K. A. (2017). Self-determination and the enrollment in and completion of postsecondary education for students with disabilities. Career Development and Transition for Exceptional Individuals, 40(4), 225–234. doi:10.1177/2165143416670135
- Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. (2020). Interim report. Barton, ACT: Royal Commission. Retrieved from apo.org.au/node/309205
- UN General Assembly. (1989). Convention on the Rights of the Child. Resolution / adopted by the General Assembly, 20 November 1989. Geneva: UN General Assembly.
- UN General Assembly. (2007). Convention on the Rights of Persons with Disabilities. Resolution / adopted by the General Assembly, 24 January 2007, A/RES/61/106. Geneva: UN General Assembly.
- Watson, J. (2017). Assumptions of decision-making capacity: The role supporter attitudes play in the realisation of Article 12 for people with severe or profound intellectual disability. Laws, 5(1), 6. doi:10.3390/laws5010006
- Watson, J., & Dew, A. (2021). Microboards Australia program evaluation. Unpublished manuscript, School of Health and Social Development, Deakin University, Burwood, Victoria.
- Watson, J., Wilson, E., & Hagiliassis, N. (2017). Supporting end of life decision making: Case studies of relational closeness in supported decision making for people with severe or profound intellectual disability. Journal of Applied Research in Intellectual Disabilities, 30(6), 1022–1034. doi:10.1111/jar.12393
Joanne Watson is Senior Lecturer, Disability and Inclusion, School of Health and Social Development, Deakin University.
Patsie Frawley is Associate Professor Disability and Inclusion Studies, Te Kuri Toi Tangata, School of Education, University of Waikato, New Zealand.