Scabies can often be mistaken for parental neglect and used as justification to remove children, despite rates of Aboriginal child removal rivalling the days of the Stolen Generations, highlighting the urgent need for a better approach to the underreported health issue, according to a health expert.
Dr Buddhi Lokuge spent two years in eastern Arnhem Land working on a new model to lower and control scabies in remote communities. His experiences in running the East Arnhem Scabies Control Program are chronicled in his new book A Doctor’s Dream: A Story of Hope from the Top End, co-authored with his wife Tanya Burke.
The program was run in conjunction with One Disease, Miwatj Health Aboriginal Corporation and the NT Department of Health, and focused on community relationship and trust building rather than the shame that came from quick fixes.
Crusted scabies is the more serious form of scabies. It results when the mite proliferation isn’t controlled by a patient’s immune system. Crusted scabies is almost non-existent in urban settings, but remote Aboriginal communities suffer the highest rates of the condition in the world.
Dr Lokuge told New Matilda it’s critical to tackle the condition because it can lead to further health problems.
“It’s like a lot of infectious conditions where it wasn’t a part of remote communities or Indigenous Australia until commercial travel and things like that brought the disease to the area,” Dr Lokuge told New Matilda.
“It found a niche or an environment where it’s been very hard to control.
“The reason a lot of people got involved in starting up this project was that studies showed seven out of 10 children had got (scabies) before their first year of life within remote communities, and it caused health issues down the track.
“I got involved because it’s something you can’t ignore as a doctor working in Australia. It’s still a condition anyone can get, but it’s just so common in certain places and it causes a lot of suffering for children and families in the long term.”
Scabies afflicts the young and the elderly even more severely – and the itch it causes can mean “children especially” were “unable to help breaking their skin from all the scratching”.
“Over time, these skin infections put children at risk of chronic kidney and heart disease, so scabies was one of the reasons Australian remote communities have the highest rate of kidney and rheumatic heart disease in the world,” Dr Lokuge writes in his book.
But the other health problems weren’t the only consequence of scabies in remote communities.
Dr Lokuge raises troubling cases of children being referred to child protection authorities because health services mistook their condition as signs of parental neglect, rather than a failure by health services to identify and treat crusted scabies.
The book outlines cases where there was one untreated sufferer of crusted scabies in a family or community, which acted as a transmitter to other family members, including children. Many times the sufferer didn’t go to the health services because of the stigma and shame attached to the condition.
Dr Lokuge writes that as he got to know the families better he “also discovered that a few children in these homes had been investigated by child protection services for suspected parental neglect”.
“When I dug deeper, recurrent severe scabies and sores and ‘poor hygiene’ were listed as significant factors in the referrals. I could see how a young child repeatedly presenting with scabies and sores over their whole body might be mistaken for parental neglect,” he wrote.
Since the launch of the NT intervention, the rates of Aboriginal children in out-of-home care has doubled, but largely due to notifications of child neglect, not issues around child sexual abuse.
The majority of Aboriginal children are placed away from their communities, with non-Indigenous people and not their families or communities.
In a 2012 report, Coordinator General for Remote Indigenous services Olga Havnen revealed the NT Department of Families and Community Services spent $47.8 million in out-of-home care and $31 million on child protection workers, but only $500,000 on intensive family-support services.
Researcher at the University of Technology, Sydney’s Jumbunna House of Indigenous Learning, Paddy Gibson told New Matilda health issues like scabies were used by NT child protection authorities as part of a case to justify a child’s removal.
“It’s really consistent that health issues that don’t have anything to do with a standard of care end up counting against parents with child protection cases,” Mr Gibson said.
“The referral from the clinic can be very judgemental about the parents, who often have health issues themselves. Another thing that triggers child protection intervention is when babies are underweight. Often it doesn’t have anything to do with child protection, but it’s held against the parent, and that’s very consistent.”
Mr Gibson says the weight loss as a result of scabies can help justify child removal.
“It’s very rare that there is only one reason used for a child being removed, but it can lead to the picture that’s being built up in the child protection department, where the health issue will count against them.
“… The health issue will turn up in an affidavit as evidence of parental neglect when it actually has nothing to do with it whatsoever.
“It can lead to Aboriginal people talking about a hesitancy to use the health services because of a worry about referrals that will result.”
Dr Lokuge said the problem highlighted the need for a better model to help eradicate scabies, based on building trust and relationships with community.
“The only way to make a child better is to manage the condition in a better way. That’s what the program ended up focusing on in the first few years.
“We were able to see a new model of care which needed different long term chronic care management… very sensitive case management rather than a medical outbreak model which scared and led a lot of people into hiding,” Dr Lokuge told New Matilda.
“One of the things the program is now doing is that instead of a child with recurrent scabies being a cause for referral and possible child neglect, the first step is for the health service to be involved and see if there has been a missed case of crusted scabies… that was a big thing for the families we were involved with.
“One elder said we had to make sure to tell other doctors so other families didn’t suffer like they did.”
He says that scabies still has a great deal of stigma within communities. There is one case in his book where a woman becomes suicidal after she was picked up by Night Patrol and forced to go to hospital to treat her scabies; the incident was broadcast on a news program by journalists who happened to be trailing the patrol that night.
The social cost of living in a house infected with crusted scabies is high, and children who turn up to school with the condition reported bullying, affecting their education through no fault of their own.
“The costs of crusted scabies specifically, were horrific,” Dr Lokuge writes.
“Amputations, quadriplegia, children being taken away from their families… yet it was still a disease few doctors had heard of, the protocols for the condition were inappropriate to these settings and little was spent on research into new medicines.”
Dr Lokuge says while in some occasions, you do need to try and fix things quickly, health workers had to begin building better relationships.
“The first thing is clear. You have to build bridges and relationships – sometimes the slow, long ways are quicker in the long run. The book was about that. There’s a lot of people on the ground in Aboriginal -ontrolled organisations and health services who realise that and want to do that.
“Often what you get is different interventions come and go and it makes it hard on top of that to build trust and relationships. But when I saw the severe form of the disease, as a doctor working in Australia, that’s a real shame for us.
“We spent a lot of money on research, and on different projects, but there are people that are missed, families who have severe scabies and sores for years and decades that have been missed because the families have avoided health services for fear of being blamed.”
*A Doctor’s Dream: A Story of Hope from the Top End by Dr Buddhi Lokuge and Tanya Burke is published by Allen & Unwin.
* The headline on this story has changed. It was originally titled: Child Removal: How governments use disease to prove parental neglect.