Health professionals have turned their back on disability and the NDIS is exacerbating the disconnect, the disability royal commission has heard.

Professor Julian Trollor of the School of Psychiatry at UNSW gave evidence last week about problems in the health system for people with cognitive disability, who suffer from a trajectory of poor health, high rates of mental health problems and higher rates of death from potentially preventable causes than the general population.

There also high rates of suicidal ideation, with a US study suggesting a five-fold risk of suicide attempts by people with autism.

The prevalence of disorders like schizophrenia, anxiety and dementia is also up to three times higher among this group and ageing is brought forward by at least 25 years for people with intellectual and developmental disabilities, the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with a Disability was told.

Professor Julian Trollor gives evidence at the royal commission on February 20, 2020.

Yet Professor Trollor said the current healthcare landscape is unprepared for the needs of people with developmental disabilities “on every level”.

“Such systemic lack of preparedness is a major contributor to the stark mental and physical health disadvantage experienced by people with developmental disability compared to the rest of the Australian population,” he said.

Professor Trollor said Australia had shifted from a medical model of disability to a social model, with the result that  “largely … health professionals have turned their back on disability”.

“One of the downsides of that is that there’s an unskilling of the medical workforce and an unequipping of the health services sector around the health needs of people with intellectual and developmental disabilities,” he told the commission.

“So, whilst there’s been tremendous progress around the demedicalisation of disability, which I fully support, there’s also been an unintended consequence”.

Diagnostic overshadowing

The inquiry also heard about the problem of “diagnostic overshadowing” when people with intellectual disability accessed health services.

Professor Trollor said this occurs when symptoms of physical or mental illness are attributed to a disability, rather than the actual physical cause, which risked people falling through the net and developing co-morbidities or chronic conditions.

“At the coalface, this is a major problem for people accessing services,” he said.

“When frontline health services hear from a person with disability, often they may see or hear about the disability first, rather than listening carefully to the symptoms someone may present with.”

NDIS creating problems

The NDIS has exacerbated the disconnect between the health and disability systems, Professor Trollor said.

He said while the NDIS is in many ways “a wonderful model”, the individual funding system means that state-based connections to health services are now missing.

“It used to be easier, in some respects, where we had a disability service provider of last resort in the state government systems to negotiate at a level with disability service providers … around provision of supports,” Professor Trollor said.

“I think under the transition to NDIS that became very difficult, because initially there was no support for those kind of health-related aspects.”

The NDIS also presented problems in terms of gaining insights into deaths of people with intellectual disabilities.

Professor Trollor estimated that from the age of 20 about 400 Australians with intellectual disability will die annually from a potentially avoidable cause.

However deaths are only reported to the NDIS Safety and Quality Commission if the person had been receiving support from a registered NDIS provider.

“Simply put, there are providers who are not registered, but there are also people with disability who are not receiving services under the NDIS whose deaths will not be part of the reporting,” Professor Trollor said.

Lack of data about health outcomes

There was also a lack of data about the general health outcomes people with intellectual disability and autism, because various data systems across the country were not connected and did not identify people with these conditions, he said.

Professor Trollor says the establishment of a national disability database bringing together data from around the country is currently under investigation.

However not all the states have signed up and it remained to be seen whether it would be feasible and adequately funded, and then made available to the public and researchers.

“One of the most helpful things would be a recommendation to the effect that such a data system should be made available, and that outcomes should be routinely reported,” he said.

The commission heard that about 1.8 per cent of the population, or more than half a million Australians, live with intellectual disability, excluding dementia.

Of that cohort, 60 per cent experience profound or severe impairments in daily living.

Read more: ‘Recovery coach’ to be added as NDIS item.

Subscribe to Community Care Review

Join the Conversation

1 Comment

  1. How do we spend so much money on setting up these systems only to make things worse? What is it about our academics and politicians that they will just not listen to the industry? This is yet another case where industry told government during consultation that the system would not work and, like aged care where we said the same thing, we have been proven correct. When will experienced people in the industry be listened to and their experience is taken note of?

Leave a comment

Your email address will not be published. Required fields are marked *