Fragile X Association of Australia (FXAA) is very disturbed by the results of the recent study by Professor Julian Trollor of the Department of Developmental Disability Neuropsychiatry (3DN) UNSW on inequity in the health system for people with intellectual disability.
Media coverage included an item on the ABC’s 7:30 Report http://www.abc.net.au/7.30/ and an article on the ABC news website: http://www.abc.net.au/news/2017-02-08/study-finds-intellectually-disabled-two-times-preventable-death/8248772
FXAA has participated in the change.org petition initiated by NSW Council for Intellectual Disability. The FXAA response is as follows:
“The Fragile X Association of Australia is very disturbed by the findings in this study. Fragile X syndrome is the leading cause of inherited intellectual disability, and single gene cause of autism. Specialised intellectual disability health services across Australia are essential for children and adults with Fragile X syndrome to ensure that all of their physical and mental health needs are identified and appropriately managed by health professionals trained to understand and respond to their specific requirements. We believe that both the lack of specialised services and lengthy waiting times fail to provide essential and timely healthcare for individuals living with intellectual disabilities, thereby negatively impacting health outcomes and quality of life. “
FXAA invites members to consider signing the online petition.