Palliative care and autism research top 2013 grants

24 June 2013

Intellectual disability researchers can now strike out into new territory, thanks to $70,000 in grants awarded today by the Endeavour Foundation Endowment Challenge Fund.

A joint University of New England (UNE) and University of Sydney research project, led by Professor Rafat Hussain (UNE School of Rural Medicine), will be the first to look at palliative care options for people with an intellectual disability in rural and metropolitan Australia and develop a pilot framework for the future.

Chairman of the Endeavour Foundation Endowment Challenge Fund Board Grant Murdoch said the $40,000 grant recognised end-of-life care as a growing challenge and welcomed research which could guide disability service providers.

"As Australia prepares for the introduction of DisabilityCare there has been continuing debate over the transition from disability support to aged care," Mr Murdoch said.

"Better health care has delivered a gradual increase in life expectancy for people with an intellectual disability and introduced a new set of challenges around ageing and palliative care," he said.

"It is generally accepted that we should support terminally ill people to remain living at home until their death. However complex legal issues face organisations that want to support people with impaired decision-making capacity to remain at home until their death, along with medical issues and access to appropriate allied health care.

"This important research will improve quality of life for older people with an intellectual disability and guide in-home palliative care options into the future," Mr Murdoch said.

University of Sydney Brain and Mind Research Institute PhD Candidate Ben Johnston has also been awarded $5,000 for research using Magnetic Resonance Imaging (MRI) to examine whether drug treatments could address neural abnormalities among children with a combined diagnosis of autism and intellectual disability. The research will target oxytocin modulated plasticity, a key factor in parent-child bonding and the formation of relationships.

In order to carry out this innovative research program, Mr Johnston will first develop training programs which will enable children with autism to undergo MRI without the use of sedatives or anaesthesia.

Practice sessions on a mock MRI scanner, Social Stories, Picture Exchange Communication, video modelling and specialist communication aids will be developed to familiarise children with MRI procedure so they can comfortably participate in the research.Media Release cont.

"We believe the training program will deliver immediate and tangible benefits because children with autism often find it impossible to cope with the noise, confined space and change of environment involved in having an MRI," Mr Murdoch said.

The 2013 Organisation Award of $20,000 has been awarded to Parramatta YMCA, to enable children with an intellectual disability to be included in school holiday camps.

Mr Murdoch said the grant would fund formal carers to support children with intellectual disability attending holiday camps, and would provide training for YMCA camp staff to sustain ongoing inclusion.

"The camps create a positive environment for children to develop social skills, including learning how to make friends and develop peer relationships and will deliver ongoing benefits to all campers and staff involved, not just young people with an intellectual disability," Mr Murdoch said.

Another $5,000 Student Research Grant has been awarded to UNE School of Rural Medicine doctoral student Miranda Cannon to look at how people with an intellectual disability can be supported to age in place, avoiding premature entry to institutional aged care.

The Endeavour Foundation Endowment Challenge Fund is a public benevolent institution that seeks to benefit the wider Australian disability sector as a whole, with an emphasis on people with an intellectual disability.

The Endowment Challenge Fund is a capital-preserved fund where donations made to the fund are invested and the interest earned is used to support Endowment Challenge Fund activities.

The Fund provides grants to researchers and postgraduate students undertaking research into significant issues for the Australian disability sector.

More information about the fund is available at

Interviews available: contact Kirrily Boulton, Endeavour Foundation Media, phone 0429 077 886.