THE “double whammy” of being an Aboriginal mother of two sons who have intellectual disabilities has led sub-standard health care, Narelle Reynolds told the disability royal commission this week.
The Wiradjuri woman, who formerly lived in Dubbo, was called as a witness to the commission’s Sydney hearing on Monday.
There she told commissioners how her sons – Justin, 38, and Luke, 33, – have Fragile X syndrome which is a genetic condition. Justin also has epilepsy and Luke has been treated for thyroid cancer.
When her two sons were young, they were misdiagnosed as having autism.
Like their mother, Justin and Luke grew up in Condobolin. However, in an effort to seek out better treatment and special education school classes for her sons she moved between Dubbo and Orange.
Years of doctor, specialist and hospital visits have left her sons with a heightened fear and anxiety about medical treatment.
That was the first time I think I recognised the fear, anxiety in him and to going to hospitals.
“Every procedure with doctors … I have to put my boys on show for people to get it,” Ms Reynolds said.
The commissioners heard that when her son Justin was seven years old he was hospitalised following an epileptic seizure. Staff then lost him and she found him crying in the middle of a nearby road.
“That was the first time I think I recognised the fear, anxiety in him and to going to hospitals,” she said.
On another occasion, medicos refused to give her six-foot tall “gentle giant” son Justin, then aged 28, medication to calm him prior to arriving at hospital for a tooth removal.
“I said to my brother, ‘Please watch him because he is going to hurt me because I’ve put him here’,” Ms Reynolds.
“I got thrown from one side of the room to the other. And it hurt.
“Then they wanted to give him something because then they were frightened that he would hurt them.”
Ms Reynolds told the commissioners that when medical staff come close to Luke to attempt treatment, he thinks that people are trying to harm him. His initial response is to at first resist, then attack.
Prior to attempting a biopsy to diagnose Luke’s thyroid cancer, Ms Reynolds urged medicos to give her son medication to “calm him down” so the procedure could be conducted.
She told commissioners they ignored her repeated requests and tried to get the biopsy eight separate times. On “the ninth attempt, with the medication, it got done”.
Two years later surgeons finally operated on Luke and after the procedure a surgeon patted Ms Reynolds on the back and said: “You did a good job convincing us to do that”.
Ms Reynolds has since moved her family to Coffs Harbour in the search of better and more culturally inclusive care, but said her Aboriginal heritage and her sons’ disabilities continue to be a “double whammy”.
“Being black and fighting through the health system is one thing, but fighting for sons with intellectual disability is another,” she said.
Being black and fighting through the health system is one thing, but fighting for sons with intellectual disability is another.
“They’re [medical professionals] dismissive because I’m black … because they’re the professional and they know better than me. And I find that really condescending.”
Ms Reynolds has called on widespread changes in the sector, including that each hospital has a trained disability worker.
Also that the NDIS should visit service providers rather than deal with them remotely, and that the NDIS should have Aboriginal liaison officers.
“I find that I’m training the workers, and I found this from day dot,” she said.
“I train the teachers how to deal with my sons, and I train the disability support workers.
“That’s a win-win for me because that helps them stay longer but it also helps them know my sons.”
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