Jo Abi fears what will happen to her two autistic teenage sons when she is no longer around to communicate when they need health care, she told the Disability Royal Commission on Tuesday.
Ms Abi of Castle Hill has good reasons to worry. Paula McGowan, whose teenager son Oliver died in 2016, told the commission she was seeing more children with cognitive disabilities in hospitals who were over-medicated.
Ms McGowan’s son Oliver, a teenager with high functioning autism, died after having an adverse reaction to a psychotropic drug. Doctors ignored Oliver when he told them that the drug had previously made him ill.
Jo Abi with her children Philip (16) and Giovanni (13) who have autism. Jo appeared via video at the Royal Commissioninto Violence, Abuse, Neglect and Exploitation of People with Disability to speak about her experience of having children with autism.Credit:Dominic Lorrimer
“We believe that if Oliver had not… had the labels of autism and intellectual disability attached to him he would absolutely… not have been prescribed psychotropic medications,” Ms McGowan said in video evidence.
An estimated 4.4 million Australians have a disability. Of those, 1.2 million have some level of communication disability. These range from those who can communicate effectively using an aid to those who cannot understand or be understood at all.
Ms McGowan, who now lives in Australia, is campaigning to introduce mandatory training in learning disability and autism for all health and social care staff in Australia. Named after her son, the Oliver McGowan training program was adopted in the United Kingdom in 2019.
It helped clinicians communicate better with people with intellectual disability and their families about their health and treatment, she said.
Ms Abi told the commission that her experience of medical help had been patchy at best.
She felt “the human rights of my two sons are being violated every day. My fear is what happens to them when we are no longer here. How do they get to lead an independent life if they need their parents to talk [for them]?”
When she took her oldest son, Philip, now 16, to hospital for treatment for mental illness, she didn’t feel like medical staff treated him appropriately given his cognitive issues.
The triage process was confronting, and he was made to wait for long periods – once 16 hours without any of his “comfort items”.
Ms Abi said she had to intervene because Philip was unable to explain how the medication was making him feel. “It was a big communication issue, which slowed his recovery. [Hospital staff] weren’t able to communicate with him to monitor if the drug prescribed was appropriate and effective. And he was unable to tell them that it made him feel sick, and he didn’t like feeling tired.”
Training staff and funding more speech pathologists to help people communicate would help, she said.
Amy Fitzpatrick, the senior advisor for disability with Speech Pathology Australia, has witnessed the impact of this lack of training of staff in the needs of people with cognitive disabilities.
In one case, a young woman who was unable to talk, other than to make noises, was treated as if she was invisible by hospital staff. “They (the nurses and hospital staff) didn’t think to find out her name from a file, or ask if she had a communication device. It was like she wasn’t there,” said Ms Fitzgerald who watched the incident unfold from her own hospital bed.
She told the commission that, because she has a rare medical condition that results in frequent hospitalisation, she had a cheat sheet that she took to hospital describing her syndrome.
Given her own difficulties communicating with health workers, Ms Fitzgerald told the commission she often imagined how difficult it would be for someone who is “non-speaking [and] uses a communication device”.
She also imagined what it was like if the situation was improved. “Imagine if they were able to go to hospital themselves without a support worker or without their family member or partner because they’ve been able to be prepared for that experience before going to hospital because they are able to call and say this is what I need.”
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