THE agonising decision families of some disabled children in western NSW make to either leave their friends and employment to move to larger regional centres or compromise on services if they stay is the focus of a study being undertaken by the University of Sydney.
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"The lack of access to therapy services such as speech and physiotherapy in rural Australia often means families are forced to compromise on services if they decide to stay," the study's project manager Dr Angela Dew said.
"It's testament to the sense of community of small rural towns that many people do stay when faced with such limited options."
As part of the study, researchers spoke with carers and service providers in communities including Dubbo, Coonamble, Gulargambone, Nyngan Bourke and Walgett.
They found friends, family and the local community were strong influences for families to remain in their home communities, but personal and economic factors made it a very difficult decision, often putting a strain on family relations and the family budget.
"When regular trips to the specialist mean four-hour drives or overnight stays and days off work they aren't sustainable, especially when caring for other children," Dr Dew said.
Challenges for families living in smaller centres, such as a lack of qualified staff, long waiting times and the cost of travel to access services were well-known, according to Dr Dew, so the focus turned to examining alternative ways of providing therapy within those communities.
The study's initial findings prompted the establishment of pilot projects in Dubbo, Lightning Ridge, Walgett, Coonamble and Brewarrina funded by NSW Department of Ageing, Disability and Home Care that aimed to tailor the provision of disability services to particular areas for those families who chose to stay in the smaller communities.
"For instance, we are looking at employing, training and supporting local people to work as therapy support workers who, via technology, link with therapists in bigger centres such as Dubbo to provide more regular therapy.
"Rather than relying on outreach, we're looking to use technology that people use at home, like iPads."
One example might see a therapy support worker visit a home with an iPad or laptop to work with a child and his or her family, and have the Dubbo-based therapist watching in real time or the session could be recorded and examined later, Dr Dew said.
Dr Drew said the study also raised some concerns about how the National Disability Insurance Scheme (NDIS) would provide users with greater choice and control when there was currently no choice in many rural areas.
"It highlights the need for the NDIS to consider different financial compensation and support arrangements for rural users, as well as the introduction of more innovative service delivery through local support roles which use online technologies to link to specialists in larger centres," she said.
"In Dubbo and centres of its size there are reasonable services although people are really struggling in smaller surrounding towns.
"(In terms of the NDIS) we need to give some thought to the fact that people in smaller towns may need more funding because the difficulties they have in accessing services. Flying in a therapist, as you can imagine, would chew up a big chunk of that money."