New research: Overhaul of healthcare models crucial to ending premature deaths for Australians with intellectual disability

Overhauling the way healthcare is provided to people with intellectual disability is crucial if we’re going to address the fact that Australians with intellectual disability are dying, on average, 27 years earlier than other Australians - not because of their disability, but because of preventable conditions that go undiagnosed or untreated in a healthcare system that isn’t working for them - new research reveals.

The National Centre of Excellence in Intellectual Disability Health is calling for urgent reform around the way healthcare is provided to people with intellectual disability, following the release of new research, ‘Australian models of healthcare for people with intellectual disability: A scoping review’. The research evaluated different models of healthcare for people with intellectual disability to see which were effective and cost-effective. The report identified key components of effective healthcare models, including:

• person-centred care
• reasonable adjustments in healthcare settings
• capacity building for the workforce
• cross-sector care coordination
• multidisciplinary teamwork.

Lead author Professor Jenny Downs, from Centre consortium member The Kids Research Institute Australia, said these simple, evidence-based changes to models of care could dramatically improve quality of life and outcomes for people with intellectual disability.

“The evidence we found in our review all indicated better outcomes for people with intellectual disability, and clinicians, when these components were part of the model of care,” Professor Downs said.

“Improvements included increased use of preventive healthcare and better access to necessary testing and healthcare.

“Three of the studies we reviewed evaluated care coordination – where healthcare was better coordinated, people with intellectual disability had better health and needed less emergency healthcare. Care coordination also saved the health sector money.”

“People don’t die of intellectual disability,” said Scientia Professor Julian Trollor AM, Director of the National Centre of Excellence in Intellectual Disability Health.

“They’re dying because common health conditions aren’t being picked up or are treated properly. That’s a serious failure of the system that needs to be addressed.

“The federal and state governments need to act now to improve health services. We need to see a range of changes implemented, including improved funding for intellectual disability-specific health services, especially in rural and remote areas, more training for health professionals, and more support for health services that are tailored for people with intellectual disability.

“Despite the best intentions of many health professionals, our current models of care aren’t working for people with intellectual disability. But it doesn’t have to be this way – this research shows there are proven, achievable solutions,” he said.

The report includes a range of urgent recommendations including that standardised and specific intellectual disability health training be provided for new and existing healthcare professionals; that government funding be prioritised for of evidence-based care coordination services; and that GPs are fairly remunerated to implement validated primary healthcare assessments.

Professor Downs said changing the way healthcare is delivered would not only benefit people with intellectual disability, but lead to better outcomes for all Australians.

“This isn’t rocket science. These are common-sense, evidence-backed approaches that can be implemented across the system,” she said.

“What we need now is leadership – especially from the Federal and State Governments – to embed these models nationally.”

The research also strongly recommended that people with lived experience of intellectual disability be involved in designing and evaluating healthcare services and outcomes.

“If we want services to be effective, we need to design them with – not just for – the people who use them,” Professor Downs said.

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