Our research impact
The Intellectual Disability Exploring Answers (IDEA) database is one of the only population-based resources in the world dedicated to intellectual disability, with additional specific research projects on Down syndrome, Rett syndrome and the CDKL5 disorder.
Researchers are examining critical time periods and their relationship with intellectual disability, including pre-term birth and the transition from school to adulthood for young adults with an intellectual disability. Research on the transition period looks at their work, where they live, who provides cares, how health and therapy needs are managed and how the young adults spend their days.
One study has found that young people with Down syndrome experience fewer behaviour problems compared with those with intellectual disability of other causes. Nutrition and physical activity in children with Down syndrome is another area being explored.
Research has shown that children with an intellectual disability or autism are up to 10 times more likely to be admitted to hospital than children without intellectual disability or autism.
Another study has found that mothers of a child with autism or intellectual disability (but not Down syndrome) were more likely to have mental health problems after the child’s birth. This may relate to the amount of care needed by their child and suggests that support services could also have an important role in supporting the health of the mothers.
Rett syndrome and related disorders
Research topics
The Intellectual Disability Exploring Answers (IDEA) database
The IDEA database has information on all children born in Western Australia since 1983 who have been identified with an intellectual disability. IDEA is one of the only population-based resources in the world dedicated to intellectual disability. Information is accessed from the Department of Communities WA, the WA Department of Education, and the National Disability Insurance Agency (NDIA) to create the database. From IDEA, it has been found that one in 50 children in Australia are diagnosed with intellectual disability. IDEA can be linked by Data Services WA with other datasets, to facilitate research into the determinants, outcomes and service needs of children and adults with intellectual disability.
Evaluating the effectiveness of gastrostomy on wellbeing
We identified children with intellectual disability in Western Australia who had undergone a gastrostomy insertion – gastrostomy can be used to reduce feeding difficulties in children with a severe disability. This was followed by a program of research that (1) found that gastrostomy insertion was followed by fewer hospitalisations suggesting that the children had better health, (2) explored child and family experiences living with gastrostomy, and (3) developed an online educational resource called Nourish for parents and other carers of children with a gastrostomy.
Down syndrome
Down syndrome occurs when there is an extra copy of chromosome 21. In Western Australia, approximately 1 in 900 children have Down syndrome. Our research has investigated children’s health, admissions to hospital, dental health, puberty, and leisure activities and participation in the community. We have also investigated the physical and mental health of mothers of children with Down syndrome, siblings, and family quality of life. Parents with a child with Down syndrome contributed important information when we developed the Quality of Life Inventory – Disability (QI-Disability) to measure quality of life.