‘Why are you letting them do this?’ The terror these mothers have for ‘unseen’ children

Two mothers, Danijela Fitzgibbon and Rachel Browne, shared the same gut-wrenching fear since their sons were babies: if their boys needed life-saving care, their pain would be dismissed, their cries overlooked and their humanity reduced to an inconvenience.

Browne’s fears were realised when her 16-year-old son, Finlay, died in 2016 from complications of a bowel obstruction after hospital staff failed to take seriously his writhing in agony and his mother’s pleas for medical attention.

Danijela Fitzgibbon has witnessed how differently the healthcare system treats her two children, William, 12, and Alexis, 10.Credit: Rhett Wyman

Finlay’s cause of death was recorded as “Down syndrome”, like many others whose avoidable deaths are recorded as an inevitable consequence of their disability.

People with intellectual disability in Australia are dying avoidable deaths at rates magnitudes higher and decades earlier (27 years on average) than the general population.

On Wednesday, the Council for Intellectual Disability (CID) launched its Our Health Still Counts campaign, urging the federal government, opposition and all candidates to commit to the full implementation and funding of the National Roadmap for Improving the Health of People with Intellectual Disability.

The council wants education on the health needs of people with intellectual disability made mandatory across all medical, nursing and other healthcare professional university degrees, increased funding for GPs to spend extra time with these patients, and a focus on First Nations people in line with the National Agreement on Closing the Gap.

When Fitzgibbon’s son, William, 12, needs medical attention, she must convince clinicians to look beyond dismissing his symptoms as a manifestation of his disability.

“As soon as doctors realise William has an intellectual disability, they don’t talk to him. They talk directly to me, tick a few boxes, and we’re out the door,” Fitzgibbon said.

In contrast, William’s sister, Alexis, who has no intellectual disability, will routinely have her eyes, throat, chest and ears checked by doctors, who prescribe her medication for mild ailments “just in case” and ask her questions about her health and hobbies, Fitzgibbon said.

The unseen crisis for Australians with intellectual disability

• More than one in three people with intellectual disability die of a potentially avoidable cause 
• People with intellectual disability die on average 27 years earlier than the general population 
• It’s a life expectancy gap comparable to that of Australia and developing countries with the highest early death rates in the world. 
• People with intellectual disability have potentially avoidable hospitalisations 3.5 to 4.5 times the rate of the general population

She recalled taking William to the hospital with agonising pain in his groin, where a doctor declined to examine him because the pain appeared to have subsided after a seven-hour wait in the emergency department. There was no consideration William could have been masking his discomfort.

“To be dismissed like that … I worry that next time he won’t go, or he’ll be misdiagnosed, or something horrible will happen to him,” Fitzgibbon said.

Jim Simpson, CID senior advocate, said the federal government had made some progress since the road map’s 2021 launch, “but we have come from a profoundly low base”.

“Week to week, we hear stories about massive problems with the quality of health people with intellectual disability receive. Families are pressured into putting ‘do not resuscitate’ [orders] in circumstances that would never be suggested for people without intellectual disability,” Simpson said.

“The tyranny of 10-minute consultations provides inadequate time for GPs to communicate and dig deep when it can be hard for people with intellectual disability to explain their symptoms.”

Families feel their loved ones’ lives are seen as “lesser than” by healthcare professionals, he said.

“I felt his entire life that this would happen,” Rachel Browne said of Finlay’s death.

“He was too difficult because he couldn’t communicate succinctly, and he was in so much pain they just dismissed his behaviours as part of his disability,” Browne said, recalling Finlay being placed in a bed out of sight, vomiting and crying out for hours before a doctor examined him.

The coronial inquest into Finlay’s death found unconscious bias among hospital staff at Bathurst Base Hospital led to incorrect assumptions about Finlay and his pain levels.

A coronial inquest found hospital staff at Bathurst Base Hospital emergency department had an unconscious bias in their treatment of Finlay Browne before his death.

“It beggars belief that this critically unwell child was given a wide berth, limited pain relief and then held down in the resuscitation bay as he was about to go into cardiac arrest and told he was naughty,” Browne said.

“He was looking at me [as if to say] ‘why are you letting them do this to me, Mum?’ ”

“This will continue until training and education is mandated,” Browne said.

The federally funded National Centre of Excellence in Intellectual Disability Health at UNSW developed a framework and resources for university courses designed to help healthcare professionals deliver effective care.

But the framework was not a requirement for accreditation, said Julian Trollor, Scientia Professor and director at the centre.

Trollor’s comparison of medical school curricula to curricula 20 years prior found “no change, in fact, less content” on intellectual disability.

“My anxiety is that unless we have an implementation program that is robust and properly funded, we’ll be in the same situation in 20 years,” he said.

Federal Health Minister Mark Butler said the government acknowledged the serious health inequities faced by people with intellectual disability and continued to support the road map.

“People with intellectual disability deserve respectful, high-quality and timely health care,” Butler said.

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