For ten months, a Senate committee has been investigating reports some people with disabilities are being sterilised without their informed consent.
The committee has now handed down a report with 28 recommendations, including a ban on forced sterilisation in cases where a person has the capacity to give consent.
It's a decision many families agonise over.
Some ultimately decide sterilising their disabled child will give that person the best quality of life.
Often the trigger for families is the trauma of dealing with menstruation when other solutions have failed.
Louise Robbins is the mother of 16 year-old Eliza who was born with a high dependency intellectual disability.
She's told the ABC sterilisation is in Eliza's best interests.
"Because she's incontinent at night. You can put two nappies on, but that's not usually enough when you're urine incontinent. And then you're menstruating as well so that usually means in the morning that it's a huge mess. Then she's upset, then she won't get in the shower and she can't stay like that. So yeah it's quite distressing."
Liberal Senator Sue Boyce - who has an adult daughter with Downs Syndrome - has been on the committee.
Senator Boyce agrees there are times when sterilisation may be the best option.
"For example the suggestion that a huge amount of stress at the sight of blood and clearly if this is true then it best protects the rights of that person, that woman, that she not have a week a month when she is traumatised."
But the inquiry has received a large amount of evidence from women with disabilities who have been sterilised without giving consent or have been coerced into giving that consent.
Many say they wanted to give evidence to ensure other young women with disabilities facing sterilisation have the support they never had.
Liberal Senator Sue Boyce says many of the womens' testimonies have been harrowing.
"One woman in here (the report) talks about at the age of 37 getting a disability that puts her in a wheelchair and effects her speech and the first thing that's said to her by a specialist is 'Oh well I'll give you a hysterectomy now'. Because obviously once you're in a wheelchair you wouldn't be a mother."
Senator Siewert was also on the committee and says some stories continue to haunt her.
"There's an account in the report around a young woman that was sterilised. She then formed a relationship and couldn't continue that relationship because her partner wanted to have a child. That still gives me goosebumps just even speaking about it, about what impact that has had on that young woman."
The committee has recommended changes to legislation in states and territories around the country.
Currently carers can receive Family Court permission to have a person with a disability sterilised.
But legislation differs between states and people with disabilities don't necessarily get legal representation independent of their parents.
The committee recommends people with disabilities should be given access to a Legal Aid lawyer trained in representing their specific needs.
The committee also says laws should be altered to specifically state that courts should assume people with disabilities do have the ability to make their own decisions, unless proven otherwise.
"We are very clear that sterilisation of people with disability who have legal capacity, capacity to consent, should be banned."
At the other end of the spectrum, the committee has stopped short of completely banning the sterilisation of people with disabilities because it says the choice whether to have children is a human right.
The committee found evidence that Family Courts have ruled in the best interests of the family, rather than in the best interests of the person with a disability.
That's why Senator Boyce says the committee has recommended a "human rights" test should be applied to legal bids for people to be sterilised, rather than the "best interests" test.
"There is even Family Court material that suggesting that 'best interest' might include the interests of the carers. Now that should not be the case. If the care is such that sterilisation is an issue there's something wrong with the support for that family, not something wrong with that person with a disability.
For that reason, many of the committee's recommendations revolve around educating parents and carers, lawyers and doctors about the specific needs of people with disabilities and the options available to them.
Senator Siewert says if those supports are provided, there is no reason to take children overseas to be sterilised.
"And if we're providing the appropriate supports around education, around legal support, around supported decision making nobody should be put in the position where they want to take their child overseas to do this. If they are, it should be illegal"
The committee says criminal penalties for sterilising children overseas should be modelled on those contained in legislation banning female genital mutilation.
The committee has heard anecdotal evidence of families travelling to Thailand, New Zealand and India to avoid the uncertainty and cost of applying through Australian courts to have children sterilised.
Share
