Dr William Crisp1, Professor Christine Bigby1, Dr Mary Whiteside1
1Lids, Bundoora, Australia
Choice and control for people with disability is a fundamental principle for the National Disability Insurance Scheme (NDIS). Traditional ideas have often led to the denial of the rights of people with intellectual disability to be self-determined. In comparison, more contemporary thinking suggests environmental factors, such as human interdependence enables self-determination. However, little research has explored how these conceptual ideas translate into practice.
Seven young people with intellectual disability with a network of supporters, enabling them to have a lifestyle reflective of their preferences participated in the study. In depth interviews and observations were undertaken with the young people, parents and other supporters. Data were analysed utilising constructivist grounded theory to ascertain the strategies to support the young people to have choice and control.
The theory of guiding self-determination was developed. Central were supporters with a vision of an ordinary life for each young person. They created environments where individual preferences were understood, respected and converted into everyday life while managing inevitable tensions. Critical was the trusting, challenging and nurturing relationship between the young person and their supporters, which enabled them to grow while being supported to have a lifestyle reflective of their preferences.
These findings have significant implications for the NDIS. There is the need to acknowledge the considerable support people with intellectual disability need to have choice and control over their lives, to resource network members to provide enabling support and think about how those without strong networks can have this type of support replicated.
Dr William Crisp is an online facilitator in School of Allied Health, Human Services and Sport, La Trobe University and a Research Officer in Living with Disability Research Centre at La Trobe University. He also works for National Disability Services as a policy and project officer on the Ticket to Work Initiative.
Dr Crisp completed his PhD in 2018 on the processes facilitating the self-determination of people with intellectual disability.