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Last resort: concerns over the sterilisation of the disabled

A Senate inquiry has heard concerns that disabled people may be being sterilised unnecessarily. Disability advocates have called for law reform, as Crikey intern Alex Burgess reports.

A Senate inquiry has heard Australia should have a system of national tribunals to handle cases of parents seeking the sterilisation of their disabled children.

Disability advocates told the inquiry this week that people (mostly women and girls) with disabilities who cannot give their consent are being unnecessarily sterilised in a hodge-podge, state-by-state system. People were making these life-changing decisions who were not qualified to do so, they warned.

Currently, sterilisation can only be approved if there’s a serious health risk, and is usually approved and sought by a parent or guardian. In all states but Victoria, this process must go through a federal court. Victoria’s Public Advocate Colleen Pearce told the inquiry’s hearing in Melbourne on Tuesday that she thought courts were the wrong place for such cases to be heard.

In Victoria, cases can go through a guardianship tribunal rather than the courts. Pearce said the system was “very robust”, and a national model could follow Victoria’s lead.

In its position statement on sterilisation, the Office of the Public Advocate says VCAT tribunals are a better place for these cases because courts are expensive and “inherently adversarial in nature”.

The OPA handles around one “special medical procedure” case each month at VCAT tribunals. These include cases such as pregnancy terminations. Unlike courts, a guardianship tribunal can consider and recommend other, less permanent options. Tribunals are used to dealing with cases like these and would be better at making informed decisions, according to Pearce.

Applications for sterilisation are usually made by parents of people with disabilities concerned about contraception and menstruation management. One submission to the inquiry by the mother of a 27-year-old woman with a disability outlines why she thinks her daughter should be able to be sterilised. This is at odds with disability advocates who prefer reversible options.

Judges aren’t equipped to make informed decisions about sterilisation, NSW Council for Intellectual Disability senior advocate and lawyer Jim Simpson said at the Melbourne hearing. He said the difference between therapeutic and non-therapeutic procedures was difficult to define, and without the right advice judges could make bad choices.

There’s rarely a need for sterilisation, according to gynaecologist and paediatric specialist Dr Sonia Grover. She said education and better resources were the way forward. Grover told the hearing she was “horrified” when parents came to her seeking sterilisation for their daughters with disabilities and said parents who sought such procedures did so because they weren’t informed about the alternatives. Dr Grover said periods shouldn’t ”mess up your life”, but the solution was not a hysterectomy.

She said most parents who contacted her wanting sterilisation for their daughter changed their minds once they understood the alternatives.

Grover said people making decisions about the sterilisation of children with disabilities should ask themselves: “Is this a procedure you would do in a non-disabled person?”

Women With Disabilities Australia wants national legislation to protect the reproductive rights of women living with a disability in. The 2010 case of 11-year-old Angela — who had her uterus removed following the approval of the Family Court in Queensland  — is an example of courts making bad decisions, according to WWDA executive director Carolyn Frohmader.

Angela’s procedure was approved on the basis of health benefits. But Frohmader questions whether, since her periods started at age nine, Angela’s doctors could have “tried and failed at every alternative (to sterilisation) within an 18-month period”.

Grover also said more should have been done in Angela’s case to explore other options and she questioned the expertise of the three doctors who gave recommendations at the court hearing, as paediatric gynaecology is a very small field.

According to speakers at the Senate hearing, decisions about the sterilisation of children with a disability or adults who can’t give their consent should be considered no differently to those of non-disabled people. They called for a national approach to handling these cases in order to prevent the wrong decisions from being made.

The inquiry will continue accepting submissions until the Febuary 22, 2013 and it will report its findings in April next year.

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    Warren Joffe
    Posted Thursday, 13 December 2012 at 6:51 pm | Permalink

    Women With Disabilities Australia wants national legislation to protect the reproductive rights of women living with a disability”

    Forgive me for needing explanation but what could be and what could be the foundation of principle for “reproductive rights”. If a woman is not intellectually capable of bringing up a child (physical limitations could be compensated for by a saintly father of the child) what duty have we as taxpayers and and as guardians of the interests of children born to the inadequate or abused to allow her to produce a child? And that’s without going into the genetic testing which would be rational in such a case but the results of which would almost certainly be beyond the intellectual capacity of the woman in question to understand and assess.

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