National intellectual disability centre opens

The federal government is establishing a National Centre of Excellence in Intellectual Disability Health to tackle the health inequities faced by people with intellectual disability.

“There are 450,000 Australians who have an intellectual disability and they deserve access to excellent, tailored and empathetic healthcare that fits their needs,” Assistant Minister for Health and Aged Care Ged Kearney said.

“My sister has an intellectual disability and I have seen firsthand the challenges she has experienced accessing health care. This centre will lead best practice and help to make our health system more accessible for everyone.”

“The lived experience and skills of people with a disability will be central to the success of this centre.”

The centre will be led by a consortium including UNSW, the 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).

It will be supported by a 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, said the UNSW in a statement.

The Acting Director of the centre, Professor Julian Trollor, said that 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. This can only be done in partnership with people with intellectual disability, health and disability professionals, services and regulatory authorities, academics and advocates,” Trollor said.

He said the core functions of the national 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.

The centre will also support access to clinical expertise and provides online support for people with intellectual disability and their families, helping to connect them to appropriate health services.

The Director of MIDAS, a member of the consortium affiliated with the University of Queensland, Dr Cathy Franklin said its strong track record in clinical work, education and research meant the service would play a leading research role in the consortium — and drive meaningful change for people with intellectual disabilities.

MIDAS operates from Mater Research and the Mater Young Adult Health Centre in South Brisbane and works with around 530 patients each year.

“MIDAS is the only outpatient clinical service in Queensland that offers health and mental health care for people with intellectual disability that is directly accessible to the general public by GP or specialist referral,” Franklin said.

The centre aims to identify gaps in research on intellectual disability health, whilst improving health services for people with intellectual disability, assisting them and their families to find the right health services and access health information.

Funded with an initial grant of $22 million, the centre is a key priority under the National Roadmap for Improving the Health of People with Intellectual Disability.

In November 2022, the government acquired a permanent licence to publish and develop the 2023 Adult Comprehensive Health Assessment Program.

The tool helps people with intellectual disability to provide important health information to their doctor. It also guides doctors in doing an annual health assessment and alerts them to commonly missed health issues in this population.

Image: (from left) MIDAS team members Dr Cathy Franklin, Cathy Beck, Dr Katie Brooker, Ruby DeGreef and Sinead Green.