Australia’s healthcare system is failing people with intellectual disability, with advocates calling for urgent reforms to address systemic neglect, discrimination and inadequate medical care.
Parents and advocacy groups say people with intellectual disability routinely face dismissive and discriminatory treatment from healthcare professionals.
Rebecca Kelly’s son Ryan was born with Down syndrome as well as hearing and vision loss, says she has struggled for years to secure proper medical care for him.
When she first inquired about a cochlear implant for Ryan, a doctor questioned whether it was necessary. “He said, ‘What does it matter – can he even talk?’” Kelly told the ABC.
“It made me feel like he was seen as less than human. To hear it from someone who should know better … it was shocking.”
Kelly said medical staff had repeatedly dismissed and devalued Ryan, who mostly communicates through body language.
She said one paediatrician was surprised she didn’t terminate her pregnancy.
“She looked at him, and she looked at me, and she said, ‘Oh, didn’t you have the [Down syndrome] test?’,” Kelly said.
“It felt like a real kick in the face … the presumption was that I’d made a mistake and that if I’d known he wouldn’t be there.
“He wasn’t a mistake. He’s a delightful child whose life has value.”
Kelly is not alone in her experiences, other families have shared similar experiences.
“This year, one parent told me that their child stopped walking, and they took them to the doctor thinking they’ve injured their legs … and the doctor said, ‘Oh, it’s normal for Down syndrome – they’re a bit lazy’.
“Some medical professionals see the lives of people with intellectual disability as less-than. When you don’t think someone has value … then you don’t treat them the same way as you do your other patients.”
Kelly’s experiences are part of a broader pattern of “diagnostic overshadowing,” where medical professionals assume a person’s symptoms are due to their disability rather than properly assessing their condition. The disability royal commission has heard extensive testimony about systemic neglect, including reports of people with intellectual disabilities being forcibly restrained during procedures and receiving substandard care.
According to the Council for Intellectual Disability (CID), Australia has nearly 500,000 people with intellectual disability, many of whom struggle to access appropriate healthcare.
Senior CID advocate Jim Simpson said the healthcare challenges faced by this group were “comparable to third-world countries”.
In response, CID has launched a campaign urging the next federal government to mandate intellectual disability training in medical degrees and introduce financial incentives for longer consultations.
“That 10-minute consultation that GPs generally have with patients does not work for people with intellectual disabilities, who need more time for communication,” Simpson told the ABC.
In 2021, the former Coalition government released a 10-year National Roadmap for Improving the Health of People with Intellectual Disability, which provided a blueprint for change.
Melba Outcomes Specialist Janet McLeod said while the current government had implemented some of its recommendations more could be done.
“The roadmap identified 72 short-term ‘actions’ to complete within three years. But so far, only nine of them have been completed,” she said.
In addition to the impact on the person, this inadequate healthcare also results in significant ongoing costs – financial, social, psychological, and physical – to their network of support.
Health Minister Mark Butler acknowledged the “serious” health inequities faced by people with intellectual disability and said the government “continues to support the implementation” of the roadmap.
However, Kelly remains unconvinced. “Getting good care for Ryan is very time-consuming, stressful, and takes a lot of skill,” she said.
“When I’m not here, who’s going to do that?”
Want to learn more and help? Here are two things to consider:
The Council for Intellectual Disability is running a campaign calling on the Australian Government to take “real action” for intellectual disability health. You can add your voice here.
The National Centre of Excellence in Intellectual Disability Health is holding a two-day conference in Sydney (in person) and online from 3 July to discuss the work being undertaken in this space and help improve the future of health care for people with intellectual disability. Register before 28 March for a discount. Scholarships are also available for people with intellectual disability, or a family member or supporter of a person with intellectual disability.
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