Health of people with intellectual disability to be improved by National Centre

Funding of $8 million has been announced for the first two years of the National Centre of Excellence in Intellectual Disability Health and $20 million from the Medical Research Future Fund will go towards intellectual disability health research.

Minister for Health, Greg Hunt, announced the funding this week and Shadow Minister for Health, Mark Butler, has committed to matching the funding, so no matter whether the Liberal or Labor party wins the Federal Election the Centre and research are guaranteed to go ahead.

Statistically, people with intellectual disability have double the number of hospital admissions as people without disability and also use emergency departments twice as much.

People with intellectual disability die up to 27 years earlier than the general population and it is believed half of these early deaths are preventable.

To work on improving these statistics, the Council for Intellectual Disability (CID) and Inclusion Australia have been leading a campaign called End Deadly Disability Discrimination.

The campaign aims to address the discrimination faced by people with intellectual disability while accessing healthcare, which is a significant contributor to the inequality in health outcomes.

As part of progressing the campaign, CID worked with the Department of Health on a National Roadmap for Improving the Health of People with Intellectual Disability, which was launched last year.

The key element of the Roadmap is the Centre of Excellence and CID Chair, Fiona McKenzie, says the funding announcement is a huge boost for advocates.

“How hard have we been fighting for this? I’ve got happy tears running down my face.

This is such good news. It is really going to help us end deadly disability discrimination,” says Ms McKenzie.

New South Wales resident Linda Hughes advocates for her 29 year old son, Jacob, who has “spent more than his fair share of time in hospital”.

Ms Hughes goes to hospital with Jacob each time he is admitted and has seen some health workers discriminate against her son.

“There’s been times where I’ve had to advocate for him to have treatment that he needs,” explains Ms Hughes.

“I feel like sometimes we’re dealing with unconscious bias and that can have deadly ramifications for people with intellectual disability.”

When COVID-19 restrictions on hospital visitors became a reality, Ms Hughes went to CID for help to work with health teams in her local area and make sure that if Jacob needed to go to hospital she could be by his side.

Ms Hughes then felt it was important for her to contribute to the End Deadly Disability Discrimination campaign.

“Some people with disability don’t have those options and certainly we know that people with disability die in hospital because they haven’t got someone there to advocate or to support them in the ways that they need support,” explains Ms Hughes.

She is “really pleased” to hear that funding for the National Centre of Excellence is guaranteed, which will ensure the National Roadmap can be implemented across Australia.

“There will be a lot of opportunity there for nationally sharing information about supporting people with intellectual disability in the health system,” says Ms Hughes.

“We certainly know locally it’s happening – our local hospitals recently had a forum, which I took part in, around improving health outcomes for people with disability.

“So we know things are happening, perhaps in various areas, and there’s greater attention to this issue but certainly having a National Centre of Excellence where there can be research and training and education [will help] because this really comes down to the unconscious bias.

“I don’t think people in the health system are deliberately or intentionally wanting to cause harm but they do come to the position sometimes with unconscious bias about disability, particularly intellectual disability, and I think that having an opportunity to raise consciousness around that [will mean] people are more able to respond to their biases.”

The Centre of Excellence will have four core functions:

• Providing national leadership, identifying research and data priorities
• Analysing and interpreting research and data
• Developing the capability of health services to meet the needs of people with intellectual disability
• Providing online support to connect people with intellectual disability to health services and information

CID Senior Advocate, Jim Simpson, explains that the Centre will lead development of healthcare so people with intellectual disability are no longer discriminated against.

“People with intellectual disability and their families will welcome this announcement. The National Centre on Intellectual Disability Health will be a key driver of action on the terrible health inequalities experienced by people with intellectual disability,” says Mr Simpson.

“The funding announced by the Minister will allow the establishment of a Centre with

solid foundations and for important research into practical strategies for improving

health care for a very disadvantaged population.”

Mr Simpson says although the funding for the Centre is initially only for two years, advocates will be working with the future Government to achieve ongoing funding.