A national centre dedicated to the health of people with intellectual disability opened in Sydney today.
The opening today of a National Centre of Excellence in Intellectual Disability Health has been welcomed by people with lived experience and the experts who will run it.
Located at the University of NSW (UNSW) Sydney campus, the centre has been designed to ensure people with intellectual disability have improved access to quality, timely and comprehensive health care.
Donna Best, who lives with intellectual disability and is the group convenor of Queenslanders with Disability Network’s Hot Topics Peer Support Group said the launch of the centre was significant for her.
“This is an important moment in time for me as a person with intellectual disability and great that we are front and centre in leading the work,” she said.
“To have a centre that will help the health system, health professionals and staff understand us, listen to us, and involve us in our healthcare will mean we get better care and have better health. We can show the world what we can do and lead the way.”
Dr Rebecca Kelly is an environmental scientist who supports her young son Ryan with intellectual disability and complex health needs. She said Ryan has experienced the many challenges in accessing health care that meets his needs.
“The centre and its comprehensive collaborative approach to improving health outcomes for people with intellectual disabilities gives me real hope for change,” she said.
“I’m very hopeful that this serious commitment across advocacy, research and government will mean that Ryan’s health care needs will be met long after I’m not able to keep fighting for him.”
The establishment of the centre is a response to the significant health disadvantage experienced by people with intellectual disability and supports the delivery of the Australian Government’s National Roadmap for Improving the Health of People with Intellectual Disability.
Professor Julian Trollor, from the UNSW School of Clinical Medicine, will lead operations at the centre, with funding of $22 million over four years from 2022-23 provided by the Australian government.
“There are 450,000 Australians who have an intellectual disability, and they deserve access to excellent, tailored and empathetic healthcare that fits their needs,” said Ms Kearney.
“The lived experience and skills of people with a disability will be central to the success of this Centre.”
The centre is led by a consortium comprising UNSW, Council for Intellectual Disability, Down Syndrome Australia, Queenslanders with Disability Network, First Peoples Disability Network Australia, University of Melbourne, Telethon Kids Institute, Mater Intellectual Disability and Autism Service (affiliated with University of Queensland) and the Centre for Disability Studies (affiliated with the University of Sydney).
The work will be supported by a broader network of 20 partner and 36 collaborator organisations, including state health departments, universities, primary health networks, peak and regulatory bodies, First Nations community-controlled organisations and local health districts.
UNSW Vice-Chancellor and President, Professor Attila Brungs said the national centre would be instrumental in co-designing better health care for people with intellectual disability, delivering meaningful change.
“This national centre will help address the health inequities faced by people with intellectual disability by improving collaboration between intellectual disability health services, research bodies and advocacy organisations. We’re proud to partner in this co-designed initiative,” he said.
The centre is built on an innovative and comprehensive model that includes shared governance with people with intellectual disability, their families, and advocates. The focus will be on people with intellectual disability and intersectional needs including First Nations people with intellectual disability, those living in rural and remote locations, and people experiencing homelessness or facing mental health and drug and alcohol issues.
Professor Trollor said previous work by consortium members had highlighted major health inequalities for people with intellectual disability in Australia.
“It’s time to turn our attention to innovative solutions,” he said.
“This can only be done in partnership with people with intellectual disability, health and disability professionals, services and regulatory authorities, academics, and advocates.”
He said the core functions of the centre would include providing leadership in intellectual disability health, driving innovation and collaboration, and lifting the capability of health services to meet the needs of people with intellectual disability through training and development of best practice models of care.
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