Project to aid families of children with developmental disabilities

Published 02 July 2009

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Researchers at the University of New England have received funding for a project that aims at improving access to services for families in rural and regional NSW that have a child with a developmental disability.

The project will involve mapping the geographical locations of service providers, surveying families’ experience of – and perceptions about – the accessibility of services, and identifying areas of need.

The services involved include those related to respite and accommodation, schooling, and post-school options for further education, training and employment.

“With regard to respite, for example, it’s crisis management only in many rural areas,” said the project’s Research Officer, Dr Annie Carn. Dr Carn, herself the mother of a child with a disability, said that while more services were needed, there was also a need to ensure that families were aware of all the existing services. “At the moment there seems to be a scattering of small agencies that only some people know about,” she said.

The principal researchers in the project, funded by the Apex Foundation, are UNE’s Associate Professor Rafat Hussain (Schools of Rural Medicine and Health) and Dr Kathleen Tait (School of Education), and Dr Louise Young from the Australian College of Rural and Remote Medicine. Their success in securing the competitive grant reflects their experience in – and enthusiasm for – research aimed at helping families with disabilities. “We want to enable children with a disability to have every opportunity to participate fully in their communities,” Dr Tait said.

Titled “Parental Perceptions of Quality of Life for Families of Children with Developmental Disabilities”, the project’s central research tool is a survey of such families. “We’re targeting families that include someone under 18 years of age who has a developmental disability,” Dr Hussain explained. “The survey will help us to understand the impact on their quality of life if there’s a mismatch between their needs and the available services.”

The researchers are contacting support service agencies and asking them to distribute the survey to relevant clients. “The survey should take about half an hour to complete,” Dr Hussain said. “Families completing the survey will also be given the option of being involved in a face-to-face interview with the researchers. The anonymity of all participants will be strictly maintained, and families will be free to withdraw their participation at any time.”

In addition to those who receive the survey through their agencies, the researchers are keen to hear from any families who would like to complete the survey and/or take part in an interview. For more information, contact: Quality of Life project, School of Rural Medicine, UNE (02) 6773 3678.

Clicking on the image displayed here reveals a photograph of (from left) Associate Professor Rafat Hussain, Dr Annie Carn and Dr Kathleen Tait working on the survey.