A 20-year-old Aboriginal woman would still be alive if “the people who had the power” cared enough, says a medical professional who tried in vain to convince the Northern Territory Health Department to help her.
Lala Mardigan died in a Darwin hospital from infections to her limbs six months ago.
Ms Mardigan, who was from the small south-western NT community of Wadeye, had chronic lupus, an auto immune disease.
In the year leading up to Ms Mardigan’s death, NT health workers attempted to have her placed under Adult Guardianship, which is designed to protect the interests of vulnerable and disabled people.
The Executive Office of Adult Guardianship, within the Department of Health, oversees applications for Adult Guardianship.
Psychologist Ruth Rudge warned the Department of Health nine months before the young woman’s death “that if we didn’t place her in a clean living environment where she was well nourished and had good access to showering and easy access to for example disabled facilities, that we were going to see a severe deterioration in her health that may actually result in death”.
In a report to the Department of Health, Dr Rudge described Ms Mardigan’s living conditions in Wadeye.
She said Ms Mardigan appeared to sleep “in a bed that was stinking of urine”.
“She was in clothes that also smelt the same. There was a cockroach infestation in the room… We found that her wheelchair was also infested with cockroaches,” she said.
“It appeared to me that the showering and toileting facilities in the house were also not functional.”
Dr Rudge worked with Ms Mardigan’s family for 12 months prior to delivering her report and was aware her mother had told child protection workers that she could not provide the care her daughter needed.
“I want to make it clear that this is a mother who had made a statement that she couldn’t cope with caring for her child, who had severe disabilities associated with her medical conditions, and nobody listened to that,” Dr Rudge told the ABC.
Despite pleas by medical staff for authorities to intervene, Ms Mardigan was not placed in the care of an Adult Guardian.
“If she was a white young woman in urban Australia she would be alive,” Dr Rudge said.
“She didn’t die because of this condition. She died because, I would say, nobody cared enough. Or the people who had the power didn’t care enough.”
John Elferink, the NT Minister for Health and Disability Services, said his department did not ignore calls to intervene but in the absence of a court order the Department of Health had no authority to intervene.
“All effort was made as we could lawfully make as a Health Department to bring medical services to that person,” he said.
Early this year, Ms Mardigan was admitted to Royal Darwin Hospital with severe infections in her feet and legs.
Speaking through an interpreter, her father Mario Parmbuk confirmed surgeons had to amputate his daughter’s legs to stem the infection.
“They cut off two legs, right and left,” he said.
“She woke up and saw it gone and she was crying,” Ms Mardigan’s mother said.
Two weeks later Ms Mardigan died.
Ms Mardigan was a healthy baby. She contracted lupus around the age of six.
“Her hands were going stiff and I took her to the clinic,” her mother, Terasina Mardigan, recalled.
Ms Mardigan’s grandfather described her parents as caring people.
“They washed her and clothed her and fed her … she was happy. And both parents were tired in the end,” he said.
At 17, child protection staff placed Ms Mardigan in foster care in Darwin, 400 kilometres from Wadeye.
When she turned 18, department staff met with Ms Mardigan’s mother to discuss her return to Wadeye.
“I’m aware that the mother then said she can’t cope. I love my daughter and I can’t cope. I cannot provide the care that she needs,” said Dr Rudge.
“No family, white or Indigenous or whatever, could cope on their own with the level of health needs that she had.
“If she was a white child living in urban Australia anywhere, she will have had an enormous amount of specialist care in the home. The family had none of this.”
But Mr Elferink said once Lala turned 18, the government had no authority to intervene in her medical care.
“I’m satisfied that we as a government have pulled out all stops in relation to what we could do,” he said.
“An adult who is not the subject of orders and who is not breaking the law can make choices about themselves.
“I can well understand people’s frustrations, but we cannot impose ourselves as a government upon people who have done absolutely nothing wrong.
“There are many cases across this country and across the Western world where there is a frustration between the desire of medical practitioners to see better outcomes for a particular patient and the legislative parameters that prevent them from doing so.”
Ms Mardigan’s family wanted her to be cared for in her home community.
“I rather see our people be cared for and looked after in our community. Whether they’re young, very old or getting sick or they’re going to pass away,” said her grandfather William Parmbuk.
He said despite good intentions, plans to “close the gap” in Aboriginal health outcomes were not working.
“The Government says it’s closing the gap. It’s not closing the gap – the gap’s getting wider,” he said.
This post originally appeared on ABC News.
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Top Comments
Articles such as these, truly frustrate me. The "if she/he were white" generalisation, even more so! Such ignorant comments are intended to be racially provocative, however are often ill-informed or (as in this case) said as a reflection of an ongoing racial inequality.
I am a single (widowed) mother who resides in Alice Springs. I have 3 children, all of whom have identified special needs - the younger two significantly so. More importantly, according to the Psychologist quoted in this article, we are a "white" family. Accordingly, as a white family with children who have disabilities, the level of government assistance, funded community support, access to disability services and "specialist care in the home".....is therefore "enormous". Our reality however, sadly echoes the conclusion that this Psychologist reached in that this "family had (has) none of this".
My professional and personal experiences of the accessibility, availability and provision of all health and community based services, is largely funded and statistically utilised by the Indigenous population. I spent over 10 years employed as a Community based health professional (including Wadeye - formally Port Keats) prior to the birth of my children. Subsequently, I have resided in the NT for over 20 years and have first hand knowledge of the substantial funding allocated to Indigenous identified programs. The debate continues as to the effectiveness of these often knee jerk, ad hoc approaches. The reality however remains, huge amounts of Commonwealth and Territory Government monies are specifically targeting Indigenous programs and funding Indigenous Organisations (such as Aboriginal controlled Health Services), Co-Ops, Community Services and the like.
Personally, I am no longer interested in the efficiency of these services - rather that they are available to the Indigenous population only! In the spirit of equality and the demise of racial delineation.....the distinction between such services is completely one sided. With regards to the availability of health services only - my white" children with disabilities, do not attend "white" funded service providers. The truth is that the Indigenous population have access to services funded for their use only, in addition to every other Service and Organisation, relied solely by all "white" community members.
MY observations and comments are NOT intended to inflame ANY individual/community member. Rather, I voice MY frustration at my children's inability to access certain services and community support, that should otherwise be available. The Psychologist's quote in this article, made a blanket statement assuming that all "white" families (in need) received "an enormous amount of specialist care in the home". In response I ask, "where is the enormous amount of specialist care in the home, that my 'white' children can expect"?
I want my children to have access to allied health services for example, within a reasonable timeframe. It understandably stings when I learn that the Indigenous funded health service wait- list is less than half that, which we continue to wait. Kindergartens and School's have bus services which transport Indigenous children to and fro each day. Meal provisions are made for Indigenous children. Public housing is largely utilised by Indigenous families, with several Organisations funded to address the various needs of the Indigenous tenants. These include specific social programs targeting housing issues, childcare, transportation, after-school/holiday programs etc.
I don't have an issue with the services - my angst is with the delineation as to whom the service is provided. Hence comments which suggest that "whites" receive anything above and beyond Indigenous individuals, really bother me. For the record, I receive the identical Centrelink Carer and Family Payments, that any Indigenous parent, of a child with special needs, would receive.
The many examples of services, referenced throughout this 'rant' - those accessible to the Indigenous population only, do little to extinguish the ongoing racial undercurrents within Alice Springs. The disparity between the provision of health related services (for example) based on race alone, is regrettable in this day and age. Furthermore, in my opinion, it's the very existence and continuation of such services, that perpetuate the very argument upon which, this article is written.
Instead of making this about race, how about you make it about what it really is, an under funded, under staffed, under resourced government department that, on a daily basis, juggles the lives of children in it's hands. The simple fact is, children are dying because of government cut backs and funding shortages. While politicians are giving themselves pay rises, hiring personal chefs, paying off second and third mortgages and privately hiring helicopters to go across town for a meeting, children at risk are being overlooked, ignored and left to die.
This isn't about race.
It is about the lack of value that our government places on the lives of innocent children.
So true, you've hit the nail on the head...