This is the final project report for the Tjitji Atunymankupai Walytja Tjutangku collaborative project initiated by the Ngaanyatjarra Pitjantjatjara Yankunytjatjara Women’s Council Aboriginal Corporation (NPYWC). The title of the project in the Pitjantjatjara language means ‘Families Looking After Children’. This report discusses what makes a good life for Aboriginal children with disabilities and their families from the Ngaanyatjarra, Pitjantjatjara Yankunytjatjara (NPY) Lands in Central Australia.
Anangu are the traditional owners, the Aboriginal people, of the NPY Lands. Families looking after children, 0 to 18 years of age, with disabilities were asked to share their experiences as carers and to suggest improvements for their lives and those of their children with disabilities. Researchers also spoke with workers from organisations that support children from the NPY Lands about the assistance they perceived was needed for those families and children to live the life they choose.
- People living on the Lands and caring for children with disabilities asked for practical help - food, bedding, clothing and household goods. The report therefore recommends assistance with their basic needs. People who are worrying about where their next meal will come from or where they will sleep each night are unable to consider more complex issues related to the needs of a family member with a disability.
- The report recommends a two-pronged approach to making day-to-day care support available on the Lands. Disability support workers need to be funded immediately to live and work in remote Aboriginal communities. Over the longer term, an Anangu workforce needs to be developed to take up this role. Anangu taking up disability support positions will need assistance and training to move into the workforce as well as ongoing support and supervision.
- Both families and workers pointed out the lack of day-to-day support for the care of children with disabilities who live on the Lands. The lack of support services was reported as a major reason for sending children with disabilities, particularly those with high-care needs, away from their families, the Lands and their culture. It is crucial that culturally appropriate in-home care support be available on the Lands to assist families of children with disabilities.
- Some Anangu asked for additional specialist and therapeutic services, and many workers noted the lack of these services and the need to make them available regularly and in a culturally appropriate way. Specialist and therapeutic supports are necessary to maximise the development of children with disabilities and to allow them to participate as fully as possible in community life.
- Most people considered that schools were providing good help for their children, but many families were concerned about children being teased by their peers. Sometimes this meant that children were reluctant to or did not attend school. Several Anangu requested additional help for children with disabilities in school, and a number of workers pointed out the need for in-school resources to enable one-to-one or in-class assistance for children with special needs.
There is limited research from very remote communities on the views of Aboriginal families whose children live with a disability. This project, instigated by the NPYWC, aimed to identify the supports and mechanisms required for families (the main care providers) of children with disabilities from the very remote NPY communities in order for them to live the lives they desire.