The Sterilisation of Girls and Young Women inAustralia – A legal, medical and social context


Written by Susan M. Brady and Dr Sonia Grover. This report was commissioned by the Federal Disability Discrimination Commissioner for the Human Rights and Equal Opportunity Commission, December 1997. This work is copyright. Reproduction in any format is permitted on condition that the source and authors are acknowledged.


Contents

Foreword

Authors

Acknowledgments

Terms Used

Introduction

The Legal Context of Sterilisation of Children

Medical Approaches to Sterilisation of Children, and Appropriate Alternatives

The numbers of sterilisations of children which have been authorised by courts and tribunals

The numbers of sterilisations of children being performed in Australian hospitals
Summary

Appendix 1: Newspaper Articles on Sterilisation

Appendix 2: Rates of Reproductive Cancers in Young Females

Appendix 3: American Academy of Paediatrics

Selected Bibliography

Endnotes


Foreword

Over a long period the Human Rights and Equal Opportunity Commission has sought to ensure that people with an intellectual disability are not subjected inappropriately to sterilising surgical procedures.

In 1992, in a case known as Marion’s case, the High Court held that court or tribunal authority is required before any child can lawfully be sterilised, unless the sterilisation occurs as a by-product of surgery carried out to treat some malfunction or disease; and that authorisation may be given only if sterilisation is determined to be in the child’s best interests after alternative and less invasive procedures have all failed or it is certain that no other procedure or treatment will work.

I commissioned this report in response to concerns that the principles laid down by the High Court were not being complied with. It is a report not by the Human Rights and Equal Opportunity Commission itself but by two independent experts. I find the evidence presented here deeply disturbing. I believe it should be deeply disturbing to all members of the Australian community.

The report presents evidence which indicates that sterilisations of girls since Marion’s case have far exceeded those authorised by courts and tribunals. To quote from the Summary of this report:

Courts and tribunals have authorised a total of 17 sterilisations of girls since Marion’s Case. Meanwhile, data collated by the Health Insurance Commission shows that at least 1045 girls have been sterilised over this same period, and this figure counts only those sterilisations which qualify for a medicare benefit and for which a claim has been processed. It excludes sterilisations carried out by hospital doctors on public patients in public hospitals. Comparisons with other data sources suggest that the true number is much greater, perhaps by a factor of several times.

The report concludes that “without any doubt” most of these operations have been unlawful; and that therefore “the law has failed to protect significant numbers of children from significant abuse of their fundamental human right to bodily integrity. Worse, the community has aided and abetted that abuse by funding it”.

I release this report in my last weeks of office as Disability Discrimination Commissioner. I call on all government and medical authorities with relevant responsibilities, and on the Australian public, to ensure that the evidence presented in this report is acted on.

Elizabeth Hastings
Federal Disability Discrimination Commissioner
November 1997


Authors

The views expressed in this paper are based on direct case work experience since 1989 in more than 30 sterilisation matters in Victorian adult guardianship jurisdiction and the Family Court medical powers jurisdiction in my former capacity as Senior Advocate of Victoria’s Office of the Public Advocate and in special medical procedures project work for the Queensland Department of Families, Youth and Community Care. In these capacities I have had the opportunity of meeting many families seeking the sterilisation of daughters with disabilities as an option for fertility and menstrual management. Further work in this area has been undertaken as part of my PhD program at the University of Queensland. The opinions expressed are mine and do not represent the views of these agencies.

Susan M Brady

Since 1989 I have held the appointment of consultant gynaecologist to the Royal Children’s Hospital and the Centre for Adolescent Health, Parkville, Melbourne. In this position I have been involved in the gynaecological care of a significant number of young women with intellectual disabilities. I have acted as representative and spokesperson for the Royal Australian College of Obstetrician and Gynaecologists on the topic of menstrual management and sterilisation of women with an intellectual disability.

Dr Sonia Grover, MBBS, MD, FRACOG


Acknowledgements

The authors would like to thank the families, specialist service providers, medical practitioners, disability advocates and lawyers who have provided differing positions with varying viewpoints, and a wealth of knowledge about the sterilisation of children in Australia.

In particular special thanks go to John Briton for his significant contribution to the content, design and analysis of material in this paper. We would also like to thank Kate Showell for her data, graphic and administrative skills, and patience.


Terms Used

This paper addresses the sterilisation of girls and young women up to 18 years of age.

We will use the term “girls” rather than the longer and more unwieldy term “girls and young women”. We are conscious of the potential criticisms that by so doing we are using language which trivialises the capacity and right of young women who are yet to reach 18 to have expressed and considered views about their own gynaecological well being. We mean no such disrespect. We use the term “girls” simply by way of abbreviation. We specifically do not use the term “young women” for this purpose because it distracts attention from the reality that significant numbers of sterilisation procedures are carried out on children who are neither teenagers nor menstruating.

By “sterilisation” we mean a surgical intervention which results either directly or indirectly in the termination of an individual’s capacity to reproduce. Typically we refer to “sterilisation procedures”, by which we mean those medical interventions which are known to or are reasonably likely in all circumstances to cause sterilisation whether or not that is the purpose for which they are carried out.

Some sterilisation procedures (for example hysterectomy but not tubal ligation) eliminate menstruation but the most commonly used menstrual suppressants (for example depo provera) are not sterilisations because they do not permanently terminate the capacity to reproduce but only temporarily prevent it. The widespread and inappropriate use of menstrual suppressants with girls with disability is a related but separate issue to that of sterilisation, and not one that we address in this paper.[1]


Introduction

General

This report concentrates on the sterilisation of girls and young women. Sterilisation procedures are performed on girls with intellectual disabilities and all cases that have come to the attention of relevant authorities (including the Family Court of Australia, state Supreme Courts, and state Guardianship Tribunals) have involved the sterilisation of girls with intellectual disabilities. This is not to say that boys with intellectual disabilities are not subject to sterilisation procedures.

The report poses a range of unanswered and grave questions about the fundamental breach of human rights and well-being of children subject to unauthorised sterilisation procedures. It suggests that a genuine concern for protection of the child’s best interests should be about a broader advocacy of the child’s interests not simply the narrow legal questions of who should make the decisions and how they should be made.

The report suggests that fundamental to the success of protecting and ensuring best interests is the support and cooperation of a broader community of medical practitioners, human service providers, specialist consultants in disability, advocates and others. Any weak link will compromise positive outcomes for the child.

A Sorrowful History

In 1997 Time Magazine [2] ran a story on an “exceptionally disquieting, macabre Swedish scandal” which has shocked and shamed the Swedish community.

The scandal came to light in reports by the newspaper Dagens Nyheter which detailed the case of an institutionalised child who was sterilised without her consent and her subsequent writ against the state for compensation. The Swedish government rejected responsibility replying only that “sterilisations had been lawful at the time”.

What happened in special schools and institutions after the Second World War and as late as the mid-1970’s to children with disabilities was, according to the Swedish Minister for Social Affairs, “nothing short of barbaric”. At the height of the eugenics [3] campaign two thirds of the girls were sterilised. The Swedish government is now looking at a review of legislation to ensure protection of children and compensation for victims of past sterilisation abuses.

Today eugenics ideology is largely rejected but it is not extinct. Mythologies about the characteristics and nature of people with intellectual disabilities continue. The residue of this type of thinking continues to have the potential for profound and alarming consequences for girls and women with intellectual disabilities in Australia.

In Australia sterilisation procedures on children with intellectual disabilities are rationalised on the basis that the operation is in the child’s best interests. She “…would not have to be informed about menstruation. She would not have to experience the discomfort and inconvenience of monthly periods. There would be no danger of pregnancy with all its attendant pain and trauma; no need for abortions; no wasting time and energy on sex education”[4].

It is fair to say that these views are not embraced by the disability community.

Debate and Publicity

There has been a lot of publicity in Australia for many decades about the sterilisation of people with disabilities. For example the Medical Journal of Australia in 1931 “supported the sterilisation of mental defectives and patients with a mental disease as a condition of discharge from hospital. It concluded that a mental defect is often inherited, mental defectives are prolific and sterilisation is a safe and simple procedure”.[5]

Medical opinion about the hereditary nature of intellectual disability has changed. The decrease in the number of sterilisations on the basis of eugenics has not been caused by court decisions but rather changes in attitude by the medical profession. [6]

Justice La Forest in Re Eve (1986),[7] a celebrated case, emphasised that due caution was required regarding decisions in favour of sterilisation. He said “…the decision involves values in an area where our social history clouds our vision and encourages many to perceive the mentally handicapped as somewhat less than human.”

Irrespective of changes in professional and community attitudes the debate has continued at medical and parliamentary levels, in the popular media television and radio, in newspapers [8], in community organisations, and at public meetings about the sterilisation of people with intellectual disabilities. It is also well represented in academic articles from a broad range of professional view points.

The disability and human rights community however remain gravely concerned and sceptical and want to ensure adequate protection from sterilisation abuses for children and adults with disability in Australia.

Sterilisation – Social and Personal Context

Proposition to be considered: A child’s best interests can be met by seeing the issue of sterilisation in context, and not as a legal or medical problem.

To see the issue in context it is necessary to look at family realities and the demands of every day life with a child with a disability. Positive outcomes for the child and her family are essentially about accessing appropriate advice, supports, and services from a range of experts in developmental disability [9]. They can provide a briefing on developmental and social factors outside the field of medical expertise and an interpretative framework for consideration of the special needs of the child and supports required by her family. In so consulting there is an acknowledgment that these matters require a coordination of efforts between a range of medical, allied health, and developmental services.

Work and research with families indicates that most families do not want to subject their daughter to invasive surgery [10]. Experience has demonstrated that it is important to recognise and acknowledge the individual nature of each family’s experiences of adjustment to the birth of a child with a disability. It is a situation wholly beyond their control and most are completely unprepared for it. Parents have variously described the experience as one of powerlessness, helplessness, vulnerability, anger, despair and grief. It is the parental adjustment and their unique experiences of this which impacts upon accommodating daily life and in turn moulds the lives of their children, their parenting practices and attitudes [11]. These families are often in situations of economic hardship, it is likely they will be a single income household, one parent remaining at home to care for the child with the disability, or being restricted to part time employment. It is important to recognise their past experiences with medical and human service practitioners [12]. This impacts upon the way in which they frame the need for sterilisation and their attitudes towards medical and other service providers and the services they offer.

As a child reaches puberty old fears and vulnerability’s re-emerge, parents again mourn the loss of the child’s potential and seeking sterilisation of their daughter often see it as the only option.

The above comments will be put in context by Annie’s Story [13] and provide an illustration as to why it is important not to see a request for sterilisation as limited to a medical or legal problem.

Annie

Annie is eleven years old and has a severe intellectual and physical disability as a result of a near drowning when she was two years old. She was admitted to hospital where she remained until transferred to a Children’s Home six months later. She remained at the Children’s Home until late 1994 when it closed. At age eleven she was returned home to the care of her parents. This was difficult for both parents and her siblings since she required full nursing care. Over the years she had undergone numerous surgical procedures and after each one “she had regressed” taking a long time to relate to her family or carers. This was a matter of great concern particularly when the outcomes of surgery were less than her parents had hoped.

Prior to returning home she had surgery for the implantation of a “button” in her stomach wall which allows for intravenous feeding. It was a procedure required to assist her parents care for her at home. It made nursing management easier because less one to one contact time is required to maintain adequate nutrition. It also means she does not have the previous personal contact at meal times. She likes human contact and tends to become disruptive when she does not have it.

Her father described an incident when he and his wife had been asked to attend hospital to participate in a case conference with a number of physicians who were considering an orthopaedic procedure to release her legs form their contracted and stiff position. The result would make transporting and caring for her easier. He said the surgeons had asked him to show them the range of flexibility in her legs. He initially declined saying he was really not familiar with her condition as he was not her primary carer. He accidentally broke both legs. He was distraught and said his daughter was terrified of him and that it took almost a year before she would make eye contact with him. The operation proceeded and after months in plaster casts, traction and skin ulcers limb flexibility had not increased as her parents had hoped.

The next recommended surgery for Annie was a hysterectomy. Her parents viewed surgical intervention cautiously but felt that if doctors were proposing the hysterectomy then it ought be in her best interests. The procedure was to assist with her care and nursing management. She was not menstruating but it was thought that she would do so within the next couple of years.

Her parents sought a hysterectomy on the grounds that she would not be able to assist with her menstruation. They were also worried that she was vulnerable to sexual abuse and its potential consequence pregnancy would be detrimental to her wellbeing. It was accepted that she would always require full nursing care and supervision and that she would be unable to care for a child. It was suggested that contraceptive medications may interfere with control of her epilepsy.

Question to be considered: Is this case about a medical problem or a legal problem, or is it best seen and addressed as a problem about a paucity of support services for her family and their fears for her future? (See Chapter 3 for a discussion of these issues.)


The Legal Context of Sterilisation of Children

The evolution of and current legal framework surrounding the sterilisation of children is described in detail in a number of authoritative reports – in particular in its Report on Consent to Sterilisation of Minors by the Law Reform Commission of Western Australia [14], and in the Family Law Council’s Report to the Attorney General Sterilisation and Other Medical Procedures On Children [15]. For present purposes it’s sufficient to give a summary only.

The Common Law

The issue was extensively considered by the High Court in Marion’s Case in 1991 [16].

It has been well established in law for many years that, (emergencies aside), medical treatment in the absence of valid and effective consent is civil and criminal assault, and that as a general rule, parents can give valid and effective consent on behalf of their children.

What wasn’t known however was whether parental authority to consent to medical treatment on their children’s behalf extended to sterilisation procedures. The uncertainty was illustrated only too clearly by four reported decisions of single judges of the Family Court during 1988 and 1989. Two concluded that parental authority extended to consenting to sterilisation [17], and two came to exactly the opposite conclusion, deciding that court authorisation was required [18]. In Marion’s Case the High Court held by majority that:

children who have the maturity and intelligence to fully understand what is proposed can give effective and valid consent to medical treatment even though they may not have reached the age of legal adulthood [19];

as a general rule parents and guardians have lawful authority to consent to medical treatment on behalf of their children who are insufficiently mature to give (or withhold) it on their own behalf, provided that the treatment is in the child’s best interests [20];

parental authority to consent to sterilisation procedures is limited to circumstances in which sterilisation occurs “as a by product of surgery appropriately carried out to treat some malfunction or disease” [21];

only a court has authority to consent to sterilisation procedures carried out for other, non-therapeutic purposes [22];

sterilisation procedures should never be authorised unless “some compelling justification is identified and demonstrated” [23];

just as it is for parents, the issue for the court in considering whether to consent to a sterilisation procedure is whether in all the circumstances of the particular child the procedure is in the child’s best interests [24];

taking the child’s best interests as paramount necessarily means excluding the interests of others except to the extent that they have a bearing on the best interests of the child [25] (though the majority commented that “in the circumstances with which we are concerned, the best interests of the child will ordinarily coincide with the wishes of the parents [26]);

to come to the view that a sterilisation procedure is in a child’s best interests the court has to be satisfied that sterilisation is “the last resort”, or in other words that “alternative and less invasive procedures have all failed or it is certain that no other procedure or treatment will work” [27];

court authorisation is required because non-therapeutic sterilisation requires “invasive, irreversible and major surgery” where:

  • there is a significant risk of making a wrong decision about both the child’s present or future capacity to consent and best interests [28] (taking into account the complexity of the question of consent, the role played by doctors in what is not just a medical decision, and the possibly conflicting interests of the child, the parents, other family members, and carers), and the consequences of making a wrong decision are particularly grave [29] taking into account the “fundamental right to personal inviolability existing in the law” [30], the “invasion of the right to personal integrity” represented by sterilisation [31], and the resulting inability to have children [32]; in circumstances where, “the decision to sterilise … is not merely a medical issue. The requirement of a court authorisation ensures a hearing from those experienced in different ways in the care of those with intellectual disability and from those with experience of the long term social and psychological effects of sterilisation.” [33]

the Family Law Act confers a welfare jurisdiction on the Family Court of Australia in respect of the children of a marriage, and the jurisdiction extends to the authorisation of medical procedures including sterilisation. [34]

State Legislation

Two states have enacted legislation regulating the sterilisation of children, both prior to Marion’s case and both prohibiting sterilisation (emergencies aside) without court approval in accordance with set, though very different criteria.

The South Australian Mental Health Act 1977 (the relevant sections of which are now incorporated in the Guardianship and Administration Act 1993) requires that the Guardianship Board gives consent before any “prescribed medical treatments” including sterilisation are carried out on persons who by reason of mental incapacity are themselves incapable of giving effective consent. This includes children, and adults with cognitive disability. Failure to comply is an offence, the only exception being where there are imminent risks to life or health. The offence is punishable by two years imprisonment or $8,000.00 fine.

The Board can give its consent only if it is satisfied that:

  • it is “therapeutically necessary”;
  • there is no alternative method of contraception “that could in all the circumstances be expected to be successfully applied”; and
  • cessation of the menstrual cycle is in the child’s best interests and is “the only reasonably practicable way of dealing with the social, sanitary or other problems associated with menstruation”.

The New South Wales Children (Care and Protection) Act 1987 requires that the Supreme Court gives consent before any “special medical treatments” are carried out on children under 16 years of age, including any procedures “intended to or reasonably likely to cause permanent infertility”, unless the treatment is necessary as a matter of urgency to save the child’s life or prevent serious damage to her health. Failure to comply is an offence punishable by seven years imprisonment.

The Court can give its consent only if it is satisfied that the procedure is necessary to save the child’s life or prevent serious damage to her health.

The New South Wales Guardianship Act 1987 applies to children who are over 16 years of age but not yet 18. It brings to bear the same framework as applies to children who are under 16 except that it vests jurisdiction not in the Supreme Court but the Guardianship Board and allows that 16 and 17 year olds may themselves consent to their sterilisation if they are capable of giving valid consent.

All three pieces of legislation are inconsistent with the common law subsequently established by Marion’s Case. They each require court (or tribunal) authorisation before any sterilisation procedure is carried out on a child, therapeutic or otherwise, and each oblige the court (or tribunal) to test applications against criteria which are different from, and in the NSW case very much more restrictive than the best interests test set down in Marion.

The High Court considered these matters in PvP. [35] It decided that:

  • states can create additional, concurrent jurisdiction to authorise sterilisation of children, but cannot alter the grounds on which the Family Court exercises the welfare jurisdiction conferred on it by the Family Law Act; and
  • any state legislation which narrows the circumstances in which sterilisation procedures may be authorised by prescribing more restrictive criteria than those established by Marion is invalid. [36]

It follows of necessity that any legislative reform to the framework regulating the sterilisation of children must in the first instance at least come from the Commonwealth in the form of amendments to the Family Law Act. [37]

Commentary

In coming to its decision the majority of the High Court in Marion recognised it brought with it a need for law reform:

“[We] acknowledge that it is too costly for most parents to fund court proceedings, that delay is likely to cause painful inconvenience and that the strictly adversarial process of the court is very often unsuitable for arriving at this kind of decision. These are clear indications of the need for legislative reform, since a more appropriate process for decision making can only be introduced that way.”[38]

That is one issue which arises, and it is one of great practical significance. The reforms if they are to be made must be made in the first instance at least by the Commonwealth.

Marion’s Case has focussed attention not only on those issues but the broader questions of whether and in what circumstances sterilisation of children should be ever be permissible, and if so, who should decide, and against what criteria.

The Family Law Council and the Law Reform Commission have each considered these questions at length. Both reviewed the literature, and sought and received submissions from professional bodies, community groups and interested individuals. Their Reports provide an important commentary on the adequacy of the legal framework which Marion has established.

What is clear is that there is overwhelming endorsement of the view that there should be heightened accountability in decision making about the sterilisation of children, that it requires an independent decision maker in the form of a court or tribunal (though there is no agreement about which court or tribunal(s) should have the jurisdiction), and that it must be confined to exceptional circumstances as the option of last resort.

What is equally clear is that the framework established in Marion is widely regarded as inadequate to achieve that heightened accountability. While they differ in the details, the Reports of the Family Law Council and the Law Reform Commission of Western Australia both:

  • reject the therapeutic / non-therapeutic distinction as insufficiently clear and precise to mark out a sub-category of sterilisations which can safely escape the heightened accountability of authorisation by a court or tribunal. Both recommend to their respective Attorneys General that there be legislation which requires (emergencies aside) that all proposed sterilisations of children for whatever purposes have this degree of accountability;
  • accept the principle that the best interests of the child are paramount, but argue that it is open to widely divergent interpretation and that clear and precise criteria should be set out in legislation to guide courts and tribunals in its application. Both recommend that the legislation makes a presumption that sterilisation is not in a child’s best interests, makes it rebuttable only if specific criteria are satisfied, and even then gives the court or tribunal power to proceed only if it is satisfied also that the sterilisation is a last resort and that there is no realistic alternative.

Their reasoning is instructive.

(i) The best interests of the child, as a last resort
The best interests principle is fundamental. Whether it be by court or parental authority, the sterilisation of a child is unlawful unless it is in her best interests, and only as a last resort.

Brennan J in his dissenting judgement in Marion drew attention to just how broad the decision-maker’s discretion is in coming to the view that sterilisation is (or is not) in a child’s best interests:

“the best interests approach does no more than identify the person whose interests are in question: it does not assist in identifying the factors which are relevant to the interests of the child … It must be remembered that, in the absence of legal rules or a hierarchy of values, the best interests approach depends upon the value system of the decision maker. Absent any rule or guideline, that approach simply creates an un-examinable discretion in the repository of the power.” [39]

He returned to the theme in PvP:

“It would be questionable legal policy to assert a power governed by such a wide discretion to authorise the invasive and irreversible procedure of sterilisation. True it is that the exercise of many novel discretionary powers come to be guided by precepts derived from experience in their exercise, but the diversity of values and circumstances which affect decisions to make sterilisation orders precludes any realistic expectation that decisions would not be made according to the idiosyncratic opinion of individual judges.” [40]

The Human Rights and Equal Opportunity Commission made the point this way in its submission to the Family Law Council:

“Almost two years have passed since [Marion’s Case] and there are no conclusive or uniform guidelines as to the discretion … other than by single judges of the Family Court … Generally judicial failure to provide guidelines has been regretted given the serious need … Guidelines would better enable parents, guardians, carers and their advisers to accurately determine whether authorisation would be given by a court without having to go through the litigious process … Establishing guidelines and procedural safeguards would ensure that the decision to sterilise is principled and therefore effectively reviewable.” [41]

The problem is real. There will be no disagreement that an indisputably therapeutic sterilisation is in a child’s best interests, but beyond that the principle is only too capable of widely divergent interpretation. The circumstances vary very considerably from case to case, making comparison difficult, and decision making is often heavily reliant on highly subjective judgement and speculative prediction about what the future holds.

But most importantly, neither courts nor parents are well equipped with the relevant experience, information or perspective to critically test the assumptions and even mythologies which underlie commonly accepted arguments that sterilisation is in a child’s best interests.

La Forrest J in the Canadian case Re Eve made the point that:

“judges are generally ill informed about many of the factors relevant to a wise decision in this area. They generally know little of mental illness (sic), of techniques of contraception or their efficacy … However well presented a case may be, it can only partially inform.” [42]

Furthermore, as was noted in Marion, the question is ‘not merely a medical issue’ but has to a large degree ‘been medicalised’ nonetheless. The High Court wanted to ensure that courts hearing these matters have input from people with different professional backgrounds and experience. It acknowledged the central role of the medical profession but added that “as with all professions, there are those who act with impropriety as well as those who act bona fide but within a limited frame of reference”. [43]

Despite that caution, detailed analysis of the sterilisation cases which have come before the Australian courts (as well as those in other jurisdictions) shows both that judges prefer and very often uncritically accept medical evidence to the exclusion of other relevant expertise and that the medical evidence demonstrated inadequate understanding of current multi-disciplinary best practice in services to people with disability. [44]

On this analysis, the courts have failed in the application of the best interests test because special educators, psychologists, therapists and others have a central role to play in any decision that a sterilisation is in a child’s best interests, and in particular whether ‘alternative and less invasive procedures have all failed or that it is certain that no other procedure or treatment will work.’

The same research demonstrates that parents find it difficult to access comprehensive information about menstrual and fertility management and are often not aware of either the alternatives to sterilisation or its implications including the possibility of unknown long term effects. Nor are other support services readily available, whether they be skills development programs, respite care and recreational options, home help, aids and appliances, or counselling.

For these reasons, and having reviewed the range of circumstances not uncommonly held to justify sterilisation of children, the Family Law Council and the Law Reform Commission of Western Australia both conclude that heightened accountability requires that there be a legislative presumption that sterilisation is not in a child’s best interests, and further that decision makers be under an obligation to satisfy themselves of specific criteria before coming to a contrary view in any particular case.

They both conclude that there are some circumstances which should never justify sterilisation, with or without the heightened accountability of court authorisation. These include sterilisation of children:

  • for eugenic reasons,
  • purely for contraceptive purposes, or
  • as a means of avoiding or masking the consequences of sexual abuse. [45]

The Family Law Council adds a fourth circumstance:

  • sterilisation prior to the onset of menstruation based on predictions about future problems that might be encountered.

Both consider that there are circumstances in which sterilisation of children might be justified, and in the Family Law Council’s view, these circumstances are limited to those where:

  • the procedure is necessary to save the child’s life or prevent serious damage to her physical or psychological health; and
  • where relevant, less permanent means of contraception have been explored and ruled out and / or there’s been an evaluation of the her response to training in menstrual management; and
  • the procedure is in her best interests. [46]

The Western Australian Law Reform Commission’s conclusion is somewhat less restrictive. It would allow sterilisation of a child where:

  • failure to carry out a procedure involving sterilisation is likely to result in the child’s physical or mental health being seriously jeopardised, or in the suffering of pain, fear or discomfort of such severity and duration or regularity that it is not reasonable to expect the child to suffer that pain, fear or discomfort; or
  • failure to carry out the procedure is likely to result in a real risk that a girl under 18 will become pregnant; she does not, and never will, have any real understanding of sexual relationships, pregnancy or motherhood; and allowing her to become pregnant and give birth in such circumstances is likely to cause her to suffer trauma, prior to, at the time of or after the birth, which it would not be reasonable to expect her to suffer; or
  • a girl under 18 has commenced menstruation or is virtually to commence menstruation in the near future; the procedure is necessary to avoid grave and unusual problems or suffering which are or would be involved in menstruation and which are such that, according to general community standards, it would be unfair to require the child to bear the additional burden of them; and
  • sterilisation is a last resort and there is no other realistic alternative. [47]

(ii) The therapeutic/non-therapeutic distinction
The majority in Marion distinguished sterilisations which are “a by product of treatment appropriately carried out to treat some malfunction or disease.” In his dissenting judgement, Brennan J characterised it somewhat differently, stressing that “proportionality and purpose are the legal factors which determine the therapeutic nature of medical treatment.” [48] Later, the majority in PvP referred to non-therapeutic sterilisations by way of contrast as “planned sterilisations.” [49]

However characterised, the distinction is fundamental. Marion establishes it as marking the boundary in Australian law between those sterilisations which can lawfully be authorised by the parents or guardians of a child (who cannot herself consent) and those which, while they might be lawful, are only lawful if authorised by a court or tribunal. If the boundary is uncertain, so too is the promise of heightened accountability in decision making and the protection afforded to children in law from what the High Court has identified as the ‘significant risk’ of ‘particularly grave’ abuse of their fundamental human right to bodily integrity.

The majority in Marion recognised that it might be problematic:

“We hesitate to use the expressions ‘therapeutic’ and ‘non-therapeutic’ because of their uncertainty. But it is necessary to make the distinction, however unclear the dividing line may be. [50]”

Deane J spelt out the problem in his dissenting judgement. He commented that the borderline between therapeutic and non-therapeutic sterilisation is not only far from precise but where psychiatric illness is involved might be all but meaningless. He added that while sterilisation to avoid ‘the special and aggravated problems of menstruation’ for a child with intellectual disability is often described as therapeutic, it didn’t appear to him to be carried out for what he would describe as conventional medical reasons. [51]

Subsequent commentary agrees with him, and seeks to rule out the possibility of uncertain boundaries allowing non-therapeutic procedures to escape proper scrutiny through honest mistake, misconception or manipulation. Well it might.

Consider this remark from a senior medical practitioner commenting on the lack of certainty in the distinction between therapeutic and non-therapeutic procedures:

“The reality of the situation often is that intellectually handicapped girls have difficulty with personal hygiene associated with menstruation and with avoiding pregnancy. The operation of choice to cover both these conditions is hysterectomy. [We] are unsure in this case which is the major indication and thus we are unsure as to whether … court or parental consent is required” [52]

The assumption that hysterectomy to ‘treat’ difficulty with personal hygiene is a clear-cut example of a therapeutic procedure is breathtaking. Procedures are therapeutic only if they are carried out to treat some ‘malfunction or disease’, and then only if they are ‘appropriate for’ and ‘proportionate to’ that purpose. Difficulties with personal hygiene do not constitute malfunction or disease, and it is highly contentious indeed to assert so unquestioningly that hysterectomy is an appropriate and proportionate response. It would be a travesty of heightened accountability if sterilisation in these circumstances escaped scrutiny disguised as therapeutic, for it calls out for a thorough exploration of alternative and less invasive solutions.

The Family Law Council notes that “in general, respondents [to its Discussion Paper of October 1993 [53]] were of the view that there is no satisfactory way of making a distinction between therapeutic and non-therapeutic procedures.” [54] It quotes many submissions to this effect, including submissions from the Australian Medical Association and the Royal Australian College of Obstetricians and Gynaecologists, but also a contrary view from the Australian College of Paediatrics. [55]

For its part and for these reasons, the Council sees the distinction as having “no merit” as a basis for distinguishing sterilisation procedures which may be consented to by parents or guardians. [56]

The Law Reform Commission of Western Australia comes to the same conclusions for the same reasons, commenting that “in taking this view the Commission is influenced by the considerable difficulties in applying the therapeutic / non-therapeutic distinction in practice, as pointed out in particular by the medical profession.” [57]

Both conclude that heightened accountability requires that sterilisation of children should be unlawful unless authorised by a court, whatever its purpose.

Two points should be made about this conclusion:

  • it has an obvious and regrettable consequence. It would mean that court authorisation would be required even for those sterilisations of children which are indisputably therapeutic, however slippery the slope. It will put a court between a child and medical treatment which is clearly indicated, which is not disputed, and which is in and of itself entirely uncontroversial (e.g. hysterectomy to treat cancer).
  • it relies on an implicit prediction that unless all sterilisations proceed to courts or tribunals for determination some at least will escape the heightened accountability they require to ensure that the children’s best interests are adequately protected. It is to say that a definitional ‘grey area’ will allow non-therapeutic procedures to slip through the net whether by honest mistake, misconception or manipulation.

The first point puts a premium on the need for legislative reform of exactly the sort the High Court identified in Marion’s Case because ‘it is too costly for most parents to fund court proceedings, … delay is likely to cause painful inconvenience, and … the strictly adversarial process of the court is very often unsuitable for arriving at this kind of decision.’

The second point invites the question whether this degree of pessimism is necessary. One would have thought not. It doesn’t follow from the fact that it’s sometimes hard to decide whether or not a sterilisation is therapeutic that it is hard to decide whether to seek court authorisation. Any grey area is easily settled. Good faith and ordinary prudence both suggest a common sense solution: err on the side of caution; if it’s not indisputably therapeutic, ask.

This is no more than risk management at its most simple: if all but indisputably therapeutic sterilisations proceed to court, then children whose sterilisation warrants heightened accountability will be assured it, medical practitioners who might otherwise be acting unlawfully will be protected from liability, and the issues will reduce to what must be asked of any sterilisation procedure in any event – is it in the child’s best interests now and into the future?; have all alternative and less invasive procedures failed?; is it certain that no other treatment or procedure will work? [58]

The only question that arises is whether the category of ‘indisputably therapeutic’ sterilisations is itself sufficiently certain.

Surely it is. There are some simple tests. One was implied in a number of submissions to the Family Law Council which sought not to reject but to reframe the distinction between therapeutic and non-therapeutic sterilisations. They might have been marking out a category of indisputably therapeutic sterilisations.

The Children’s Interests Bureau, for example, commented that the distinction would have validity if ‘therapeutic’ referred only to the removal of a physically diseased part of the body. [59] For its part, the Queensland Department of Family Services proposed that therapeutic sterilisations be defined to include only those which are necessary because there is a physiological condition which threatens life or permanent damage to bodily health, for example cancer of the uterus or ovaries, and non-therapeutic sterilisations as ‘elective surgery’ carried out for reasons of fertility and / or menstrual management. [60]

The ‘but for’ test identifies indisputably therapeutic sterilisations equally well in readily understood operational terms: ask whether sterilisation would be recommended in the same clinical circumstances but for the girl’s intellectual disability. If so, regard it as indisputably therapeutic. If not, it may yet be in the girl’s best interests, but regard it as non-therapeutic and seek court or tribunal authorisation. [61]

Summary

The law established in Marion’s Case and which applies in all Australian States and Territories is that:

  • court or tribunal [62] authorisation is required for any sterilisation procedure carried out on a child except those which are “appropriately carried out to treat some malfunction or disease”; and
  • a court or tribunal can give its authorisation if and only if sterilisation is “in the child’s best interests” after “alternative and less invasive procedures have all failed or it is certain that no other procedure or treatment will work”.

The reasoning underlying the decision is fundamental. The High Court came to its decision:

  • in order to achieve a heightened accountability in decision making to sterilise children when it is proposed for other than therapeutic purposes; because: in the absence of heightened accountability there is a significant risk of wrong decisions being made; and; if wrong decisions are made, there are particularly grave consequences for the fundamental human rights of the child. [63]

However commentators agree that the best interests test is too capable of widely divergent interpretation, and urge law reform. This is because:

  • the circumstances calling for decision vary considerably from case to case, making comparison difficult;
  • decision making is often heavily reliant on highly subjective judgement and speculative prediction about what the future holds; and
  • neither courts nor parents are well equipped with the experience, information or perspective to critically test the assumptions and mythologies which underlie the commonly accepted arguments that sterilisation is in the (intellectually disabled) child’s best interests.

Commentators are also critical of the distinction between therapeutic and non-therapeutic sterilisations because of its lack of certainty, and urge law reform for this reason also. This is because:

  • sterilisations for some purposes which call out for a thorough exploration of alternative and less invasive alternatives are commonly regarded as being ‘therapeutic’ in the case of girls with intellectual disability, even in the absence of any identifiable ‘malfunction or disease’ for which sterilisation would otherwise be regarded as appropriate ; and
  • if the distinction is uncertain, so too is the promise of heightened accountability and the protection afforded to children in law from the ‘significant risk’ of ‘particularly grave’ abuse of their fundamental right to bodily integrity.

Pessimism may be justified, but ethical professional practice can of itself ensure the heightened accountability the High Court sought to achieve. Court or tribunal determination of whether non-therapeutic sterilisation is in a girl’s best interests can be assured simply by medical practitioners and hospital administrators making sure that none but ‘indisputably therapeutic’ procedures are performed without court or tribunal authorisation.

Indisputably therapeutic sterilisations are readily identifiable by a simple test which asks for no more than good faith and ordinary prudence: would sterilisation be recommended but for the girl’s intellectual disability?

Legislative reform is urgent and overdue if medical professionals can’t address these issues through self regulatory frameworks specifying ethical and professional best practice. It’s urgent and overdue in any event for exactly those reasons the High Court identified in Marion, none more so than to ensure that heightened accountability in decision making about the sterilisation of children doesn’t come packaged with the powerful disincentive of an additional financial burden of legal costs on the families of children with intellectual disability.


Medical Approaches to Sterilisation of Children, and Appropriate Alternatives

This chapter is written in plain english and is not necessarily precise in its use of technical medical terminology. It is intended to give accurate but basic information only about the relevant medical procedures and their outcomes, not detailed clinical descriptions or medical opinion.

What is Sterilisation?

Sterilisation involves a surgical procedure which results in the permanent loss of reproductive capacity.

Sterilisation procedures include hysterectomy, tubal ligation, endometrial ablation and bi-lateral oophorectomy.

(a) Hysterectomy

  • will cause permanent cessation of menstruation by removing the uterus
  • will result in permanent infertility

There are a number of types of hysterectomy procedures.

(i) partial hysterectomy

  • sometimes called sub-total hysterectomy
  • is the removal of the body of the uterus
  • after surgery the cervix and the stump of the uterus remain requiring regular pap smears

(ii) total hysterectomy

  • sometimes called complete hysterectomy
  • is the removal of the uterus, including cervix
  • the ovaries and tubes are not removed
  • the female will continue to ovulate but will no longer have menstrual periods, instead the egg is absorbed by the body

(iii) total hysterectomy with removal of ovaries

  • sometimes called total hysterectomy with bilateral salpingo-oophorectomy
  • is the removal of the uterus, cervix, fallopian tubes and both ovaries
  • this surgery is usually to treat widespread reproductive tract cancer or in post menopausal women where ovarian function has ceased

(iv) radical hysterectomy

  • is the removal of the uterus, cervix, fallopian tubes, ovaries and the upper part of the vagina
  • this surgery is usually to treat widespread reproductive tract cancer

(b) Endometrial Ablation

  • is a recently developed surgical procedure using advanced diathermy or laser technology to attempt to remove the lining of the uterus (the endometrium), thus causing bleeding to cease or diminish
  • is predominantly used with women who have heavy bleeding and do not wish to have any further pregnancies

(c) Bi-lateral Oophorectomy

  • is the removal of both ovaries, usually to treat widespread reproductive tract cancer
  • is a very serious procedure where the ovaries are functioning or have the potential to function because removal of the ovaries will cause a cessation of hormone production and hence menopause [64]

(d) Tubal Ligation

  • is sometimes called a tubal sterilisation
  • will cause cessation of fertility by blocking the female egg from moving to the position where it can be fertilised by the male sperm
  • the woman will be infertile but will continue to ovulate and menstruate
  • the procedure is considered permanent but depending on the technique used may be reversible

There are several type of tubal ligation operations. In all of them the woman’s fallopian tubes are closed. This can be done by:

  • cutting out a section of the tube and tying the cords with surgical thread
  • leaving the tubes intact and placing rings or clips over them
  • sealing the tubes by an electric current which acts to block the passage (diathermy)

Girls and medical issues relating to gynaecological health

The pathologic processes in children and young women are significantly different from those of their adult counterparts. Sterilisation is rarely appropriate, and then only as ‘a by product of surgery appropriately carried out’ to treat either diseases of the reproductive tract or severe menstrual disorders.

(a) Diseases of the reproductive tract

Conventional medical approaches to diseases of the reproductive tract may include hysterectomy, endometrial ablation and bi-lateral oophorectomy. However disease of the reproductive tract is a very rare occurrence in young women [65], and it follows that it is a very rare circumstance that invasive surgery like hysterectomy, endometrial ablation or bi-lateral oophorectomy is required for ‘indisputably therapeutic’ or conventional medical reasons. (See Appendix 2 for rates of reproductive tract cancer).

These rare circumstances include:

  • malignancies of the genital track: Occasionally chemotherapy from other cancers results in the loss of ovarian function but ovaries are not removed if they fail for this reason. Studies indicate that modern treatment for cancers seems unlikely to be sterilising, although treated women may be at risk of premature menopause. [66]
  • non-malignant disease effecting both ovaries: A recently completed 10 year review of ovarian pathology at the Victorian Royal Children’s Hospital has found no case of bi-lateral oophorectomy for bilateral ovarian disease, for torsion of both ovaries or for loss of function of both ovaries. The study in Victoria’s ‘premier’ children’s hospital provides strong evidence for the proposition that these types of conditions are exceedingly rare in children and young women [67]
  • benign conditions such as congenital abnormalities [68]: The literature identifies one case for major pelvic infection following surgery aimed at correcting a congenital abnormality involving the uterus and lack of vagina [69] and the other for torsion of the uterus. The latter is also exceedingly rare with only two other similar cases reported in the literature. [70]

(b) Menstrual disorders

Menstrual problems are common at the beginning and end of the fertile period in women’s lives. Irregularities related to the menstrual cycle frequently occur in young adolescent girls age 9 to 15 years and are sometimes brought to the attention of general practitioners and paediatricians. [71] Most of these problems are minor and can be resolved with reassurance and education about the wide variation in normal development during puberty. [72]

Some conditions, however, can be properly termed as disorders and require further investigation and treatment. Common disorders include;

  • dysmenorrhoea (discomfort and pain associated with menstruation),
  • menorrhagia (excessive menstrual loss [73]), and
  • pre-menstrual syndrome (negative mood changes).

Surgical interventions are rarely indicated for these conditions in young women.

Dysmenorrhoea and menorrhagia in the absence of disease is managed by hormone therapy and/or a range of other drug regimes. It is only when medical management fails that surgery is considered and in these cases a secondary pathologic cause is often uncovered. [74]

Pre menstrual syndrome (PMS) is not an indication for surgery. Studies suggest that there are no objective criteria for the diagnosis of PMS, and that definitions of the syndrome vary widely. Clinically significant PMS is experienced infrequently by young girls and adolescents, however, it becomes more prevalent as women get older. To date aetiology and underlying patho-physiologic mechanisms leading to symptoms of PMS have not been identified. [75] Most adolescents should be managed with reassurance, dietary and exercise modifications. [76]

Girls with intellectual disability and menstruation

A diagnosis of intellectual disability does not by itself constitute a clinical reason for sterilisation. The onset of menstruation is the same in girls with [77] and without intellectual disability [78], and girls with intellectual disability present with the same types of common menstrual problems [79] as the rest of the young female population. There is a very rare occurrence in girls of disease at the sites of ovaries and/or uterus. [80]

It follows that the sterilisation of girls with intellectual disability ‘as a by product of surgery appropriately carried out to treat some malfunction or disease’ is rare and should be no more common among girls with intellectual disability than it is among their non-disabled peers.

While therapeutic sterilisation of girls with intellectual disability is rare, it does not follow that non-therapeutic sterilisation cannot be justified. In certain circumstances it may yet be justified as being in the girl’s best interests.

It is an often held view that it is. Hysterectomy and endometrial ablation are commonly taken to be appropriate tools in the management of the menstruation of girls with disability, particularly when it presents as difficult because of heavy and ongoing bleeding, persistent pain or cyclical mood swings and idiosyncratic or other ‘problem’ behaviour [81].

Surgery however is very rarely the option of genuine last resort. There is powerful evidence arising from both clinical and legal settings that less invasive medical and developmental alternatives work if only they are actively explored. For example:

  • Elkins describes a ‘model clinic’ where an approach based on counselling and education was trialed as an alternative for sixteen women with intellectual disabilities originally referred for hysterectomy. In none of these cases was hysterectomy found to be necessary and appropriate for reasons of menstrual or fertility management. [82]
  • Grover reports that over an eight year period only two out of fifty-nine girls referred for investigation of menstrual difficulties required surgical intervention – one by way of abdominal hysterectomy, and the other by endometrial ablation as the less intrusive procedure in the circumstances. [83]
  • Ford describes the (not atypical) case of Re W in the jurisdiction of the New South Wales Guardianship Board. Authorisation was sought for hysterectomy on the grounds that W suffered substantial distress as a result of continual heavy bleeding. The Board adjourned the hearing so that a contraceptive pill with higher doses of hormones could be trialed. The treatment was successful and surgery was no longer necessary. [84]
  • Brady describes from long experience in the jurisdiction how most parents seeking the Family Court’s authorisation of the proposed sterilisation of their daughter with intellectual disability have not at the time of application been provided with any information about medical or developmental alternatives of a less invasive nature. Where there are protocols and guidelines in place which ‘divert’ matters from court until parents been provided with the opportunity to explore the options, they rarely proceed with their application. Nine out of eleven matters were ‘diverted’ in this way in Victoria in 1993, and seven out of eight in Queensland in 1995. She describes these as success stories because “the families and children involved received services such as respite care, home-help, and needs-based developmental programs, and the child retained a functioning organ and her bodily integrity.” [85]

Surgical intervention is only rarely necessary in the absence of disease, and difficult to justify. Sterilisation in these circumstances is in the main a response not to clinical medical need but to disability. It reflects persistent negative attitudes towards fertility, menstruation and menstrual management in young women with intellectual disability. [86]

Intervention to eliminate menstruation prior to its onset is particularly difficult to justify. [87] The pattern of menstrual loss, and any associated symptoms and behaviours are impossible to predict and rely on speculative assertion at best.

The reasons that are frequently given in support of sterilisation being in the best interests of girls with intellectual disability, the reasons why great caution should be exercised before these reasons are accepted, and the less invasive alternatives which in any event should first be tried and excluded each warrant further discussion.

(i)Reasons that are commonly given in support of the sterilisation of girls with intellectual disability by way of hysterectomy and endometrial ablation [88]

  • resolving pain and physical discomfort such as cramps and “heavy” bleeding which may be associated with menstruation;
  • ameliorating other medical conditions that might be effected by hormonal fluctuations, such as epilepsy;
  • ameliorating mood swings and behaviour thought to be associated with pre-menstrual tension or menstruation;
  • resolving difficult or inappropriate social behaviours associated with menstruation, or emotional reactions to menstruation;
  • permanently stopping menstruation to remove the young woman’s personal care tasks associated with menstrual management;
  • easing the burden on parents and carers by eliminating menstrual management and related personal care tasks;
  • eliminating the need for the young woman to learn personal care skills associated with menstruation;
  • reducing the need for the young woman to be informed about menstruation and fertility or to learn protective behaviours; and
  • preventing pregnancy.

(ii) Alternative and less invasive ways of addressing these issues [89]

  • pain relief strategies or medication can be effective if the young woman is experiencing menstrual discomfort;
  • behaviour management strategies can resolve difficulties caused by inappropriate behaviours associated with menstruation and to inform and reassure the young woman if she has emotional reactions to menstruation;
  • self help skills development programs can be effective in teaching the young woman to manage the personal care tasks associated with menstruation, reducing the demands on families and carers, as can behaviour support and management techniques ranging from aids and equipment to changes in types of clothing worn;
  • alternatives to sterilisation such as the contraceptive pill, depo provera injections or a range of other options will be appropriate if the young woman is sexually active;
  • human relations education and training and support programs in life skills and protective behaviours are appropriate if there are concerns a girl at risk of sexual assault, as is a review of her personal support and supervision;
  • a diverse range of family support services over and above those already listed such as in and out of home respite care, recreational and activities programs will provide powerful support to families.

(iii) Responses to the reasons commonly given in support of sterilisation of girls with intellectual disability by way of hysterectomy and endometrial ablation

the reasons about mood swings and behaviour changes:

Hysterectomy will not resolve mood swings or behaviour unless both ovaries are removed. [90] Removal of the ovaries will drastically compromise both short and long term health and well-being. [91] It will cause immediate menopause with a markedly increased risk of osteoporosis.[92] It will increase the risk of ischaemic heart disease. [93]

Research suggests that reproductive function, mood and behaviour have been too closely linked for too long. Preliminary findings indicate that there is a fundamental flaw in medicalising moods and behaviour by attributing them to uterine function and/or the menstrual cycle rather than environmental factors and stresses. Many of the associations to date between the menstrual cycle and mood swings are oversimplified and in the words of the United States Office of Technology Assessment are “based on myths, unwarranted assumptions and conclusions derived from outdated, poorly constructed studies.”[94]

Preliminary findings from the Key Centre for Women’s Health in Melbourne are that stress and depression may be major issues in premenstrual syndrome (PMS) and that measurable hormonal fluctuations between sufferers of PMS and the normal population are negligible.[95]

This research casts significant doubt on past assumptions and suggests it is too easy to attribute mood swings and behaviours to menstruation, and to ignore what may be going on in the young person’s life. The symptoms may be manifestations of stressful environments or adolescence. Experience often shows that after hysterectomy moods and behaviour have not significantly changed and that parents who have sought sterilisation on this basis are disappointed. It is common for the behaviours then to be reframed and explained as a result of increasing inability to deal with frustration or of an increasingly difficult personality.

Hysterectomy is unlikely to markedly influence difficult behaviours. Individual needs based behaviour management programs are more likely to be successful, and will assist the young woman to develop skills to cope with frustration in daily living as well as a range of other useful social skills.

the reasons about better management of epilepsy:

Hysterectomy may not necessarily improve epilepsy. Hormonal fluctuations do not cause epilepsy but may increase cyclical seizure activity. Increased cyclical seizure control is likely to be insignificant if the ovaries are not removed. [96] If ovaries are removed then future health and well-being will be drastically compromised (as described above).

Notably, sterilisation is not ‘a treatment of choice’ for girls with epilepsy who do not have intellectual disability.

the reasons about menstrual management:

Studies have illustrated that there is a poor correlation between pad changing, independence and other self care and functional hand activities, thus suggesting a lack of access to menstrual management teaching. Lack of support and educational opportunity is further illustrated by inappropriate behaviours such as smearing which can be addressed by menstrual preparation training for young women. [97]

Hysterectomy does remove the difficulties families and carers experience with management of menstruation [98] but it does not remove daily toileting management. This is also a significant nursing management issue if the child is dependent in this way. Interestingly, consideration is never given to the installation of a colostomy bag for toileting difficulties. It is considered inappropriate and medically unnecessary in these circumstances because there is no disease in the bowel and urinary tract. Arguments for elimination of menstruation in relation to nursing management and inappropriate behaviours are primarily about social taboos. [99]

the reasons about sexual abuse and the risk of pregnancy:

Sterilisation will never overcome vulnerability to sexual abuse, only pregnancy as one possible consequence. Sexual assault is a problem for all young women, including young women with intellectual disabilities [100], and it demonstrates the need for educational and protective behaviour programs. If vulnerability to sexual assault is a major issue of concern, the most fruitful response is ensure that programs like these are put in place and to review how the environment might be made more safe. Sterilisation is not an appropriate response to fears of sexual assault. [101]

Indeed research suggests sterilisation may lead to a cycle of neglect and increase the likelihood that sexual abuse will go undetected. [102] If contraception is seen not to be a concern, the young person may be less likely receive health and sexuality education, training in protective behaviours and timely medical review. Sexually transmitted diseases and a range of other conditions associated with sexual activity whether abusive or consensual may be overlooked until health has been seriously compromised. [103]

Further, there is no data to confirm that pregnancy is a significant risk in this population.[104] There are approximately 2,300,000 girls under 18 in Australia. [105] Of these 1.83% – 2% have some form of intellectual impairment. [106] On the argument under consideration, this means approximately 40,000 girls with intellectual disability are potential candidates for sterilisation because they are potentially at risk of pregnancy.

There are no figures to substantiate fear of pregnancy in this population. Figures from the Office of the Public Advocate in Victoria record that in the adult guardianship jurisdiction between 1987 and 1994, only 20 cases (approximately) involved applications for authorisation of termination of pregnancy, and only 15 cases (approximately) raised issues of child protection, adoption or foster care regarding the children of women with intellectual disability.[107]

These figures do not demonstrate a huge problem and caution against sterilisation on the basis of risk of pregnancy. This contextual backdrop illustrates the socio-political nature of issues relating to the sterilisation of young women with intellectual disabilities.[108]

Finally and interestingly, the Full Bench of the Family Court in PvP took what appears at face value to be a progressive position on the child’s right to future sexual activity saying “..that she should not be deprived of such an experience and that to do so would be to discriminate against her because of her disability”. [109]

For various reasons pregnancy was thought not to be an option. What is interesting is that the Court nowhere appeared to have considered the detriment, if any, to sexual pleasure which may have resulted from the removal of her uterus. A growing body of research suggests that the uterus and cervix play an important part in sexual satisfaction. [110] In terms of an increased quality of life for the young woman by way of avoiding pregnancy the penalty may be a reduced enjoyment of sexual experience.

Finally, the reasons commonly given in support of the sterilisation of girls with intellectual disability fail to take into account possibly adverse long term health effects

They imply that hysterectomy has minimal adverse consequences. They assume both medically and socially that the uterus has no function other than reproduction, that the removal of the uterus of someone who is physically immature has none, little or only transitory impact on her quality of life moving into adulthood, that it will not have a significantly negative impact on her long term health and well-being, and that the risks associated with the surgery itself are minimal. [111]

There are differences of opinion regarding whether or not hysterectomy carries with it significant long term health risks. Carlson notes that: “Within the international medical literature, several research articles suggest possible long term effects of hysterectomy on pre-menopausal women. These include early menopause with hormone deficiency effects; and increased risk of cardio-vascular disease possibly related to prostaglandin deficiencies. Prostaglandin is produced in the endometrium (lining of the uterus)…..Although the retention of ovaries in the hysterectomy-only cases is said to ensure normal hormonal production, this appears to be an assumption, rather than established fact. No research has been identified which investigates the long term effects of hysterectomy (or ovariectomy, endometrial ablation, tubal ligation), on young women over a long period of time.” [112]

Summary

Disease of the reproductive tract is a very rare occurrence in girls, and no less rare in girls with intellectual disability. Surgical intervention in the absence of disease is difficult to justify on clinical and medical grounds. (See Appendix 3 for an enlightened statement of principle and practice regarding the sterilisation of women with an intellectual disability).

It follows that sterilisation of girls with intellectual disability ‘as a [genuine] by product of surgery appropriately carried out to treat some malfunction or disease’ is rare, and should be no more common among girls with intellectual disability than it is among their non-disabled peers.

Sterilisation for other non-therapeutic reasons is a response to disability, not clinical medical need. It reflects persistent negative attitudes towards fertility, menstruation and menstrual management in girls with intellectual disability.

Very considerable caution should be exercised before coming to the conclusions that sterilisation in these circumstances is the option of ‘last resort’ and ‘in the child’s best interests.’

Heightened accountability in decision making about the child’s best interests requires a coordinated, experienced and multi-disciplinary approach. Serious attention should be given to the array of services and supports which may significantly enhance both the child’s quality of life and that of her parents, siblings and carers. Sterilisation is not a solution for the scarcity of family supports and resources.


The numbers of sterilisations of children which have been authorised by courts and tribunals

The law which applies in all Australian states and territories was established by the High Court in Marion’s Case in 1992. In summary, [113] it is that:

  • court or tribunal authorisation is required for any sterilisation procedure carried out on a child except for those which are “appropriately carried out to treat some malfunction or disease”; and
  • the court or tribunal can give its authorisation if and only if sterilisation “is in the child’s best interests” after “alternative and less invasive procedures have all failed or it is certain that no other procedure or treatment will work.”
  • the Family Court of Australia has jurisdiction in all states and territories, but concurrent jurisdiction is exercised: in South Australia by the Guardianship Board; and in New South Wales by the Guardianship Board in the case of 16 and 17 year olds, and the Supreme Court in the case of children under 16;
  • in those states, sterilisation of children, therapeutic or otherwise, was made unlawful by legislation in 1977 and 1987 respectively unless authorised by the relevant state court or tribunal; however the High Court found in PvP that the legislation is invalid in so far as it is inconsistent with the law established in Marion.

The court and tribunal data

Specific data has not been recorded certainly until recently, and each jurisdiction is reluctant to be ‘quoted’ as to the exact numbers either of applications which have been made for authorisation of sterilisation or of the authorisations which have been given. The data which is available and which goes back to 1988 is regarded however as a ‘reliable approximation’. It is set out in Table 4.1.

It shows that since 1987 Australian courts and tribunals have authorised a total of 25 sterilisation procedures to be performed on children, including 17 since Marion’s Case in 1992.

A table showing the number of authorisations of girls by Australian Courts and Tribunals between 1987-1997. The total number of sterilisations of girls authorised by Courts and Tribunals in Australia between 1987 and 1997 is 25. The youngest was 12 years old. Several of these involved children who had not begun to menstruate

(i) in South Australia:

  • there have been 10 applications to the Guardianship Board, 7 of which were authorised (the Board’s authorisation in an 8th case was overturned by the Administrative Appeals Court on appeal); [114]
  • it appears that no more than 5 applications were received by the Guardianship Board in the period between 1979 (when proclamation of the Mental Health Act 1977 made sterilisation of a child unlawful in South Australia unless authorised by the Board) and Marion’s Case in 1992; [115]
  • the Board finds ‘menstrual management’ matters the most difficult, in particular matters relating to ‘social, sanitary and other problems associated with menstruation’; and its experience is “that such ‘problems’ are more often problems for the carer or associates of the person with the disability.” [116]

(ii) in New South Wales:

  • according to a search [117] by state, including unreported cases, there has been just one matter heard in a state Supreme Court, in NSW in 1996 [118]
  • there have been 9 applications to the Guardianship Board in respect of 16 and 17 year olds, of which 3 were authorised [119](in one case authorisation was refused by the Board but subsequently given when the matter was taken to the Family Court) [120];
  • it appears that no more than 6 applications were received by the Guardianship Board in the period between 1989 (when proclamation of the Children [Care and Protection] and Guardianship Acts 1987 made sterilisation of children unlawful in New South Wales unless authorised by the Supreme court or the Board) and Marion’s Case in 1992;
  • of the procedures authorised by the Board, 2 were for two hysterectomies with retention of ovaries, and 1 for tubal clip sterilisation. That case (in 1992) was the first authorisation given under the Guardianship Act 1988. The young woman was sexually active and had cardio-vascular disease which precluded the use of alternative contraceptive methods. The sterilisation was for permanent fertility management and the board authorised the least restrictive option being tubal clip sterilisation. [121]
  • there have been no authorisations given for bi-lateral oophorectomy or endometrial ablation;
  • an analysis of the reasons why authorisations were sought found that “overall, contraception featured as the motivation or one of the motivations in 7 of the 8 cases [ up to February 1994]. Menstrual management featured as the motivation or a motivation in 4 of these applications and ‘medical reasons’ featured as the motivation or a motivation in 3 ….” [122]
  • interestingly, and in support of research in the area [123], the information on these files showed that only 4 of these 8 young women received some form of specific sexuality, human relations, or menstrual management training or counselling prior to the lodging of the application for sterilisation. The 4 young women who did access support received their training from developmental disability services, with 2 of them also receiving support and education from their families and school teachers. None of the young women had contact with the Family Planning Association. [124]

(iii) in the Family Court of Australia:

  • there have been 15 applications to the Family Court, 14 of which have been authorised (the exception was Re L and M [125]). There have been several further applications in respect of other ‘special medical procedures’, including gender reassignment [126], disputed heart surgery [127], and harvest of bone marrow [128].
  • in the majority of cases the procedure the Family Court has authorised is hysterectomy, however one included hysterectomy with bilateral oophorectomy [129], and another endometrial ablation with hysterectomy as a last resort [130].

Summary

Since 1987, Australian courts and tribunals have authorised a total of 25 sterilisation procedures to be performed on children, including 17 since Marion’s Case in 1992.


The numbers of sterilisations of children being performed in Australian hospitals

The data is collected from a variety of sources, including the Health Insurance Commission, the Australian Institute of Health and Welfare [131], and two major research projects relating to the sterilisation of children – Menstrual Management and Fertility Management for Women who have Intellectual Disability and High Support Needs : An Analysis of Australian Policy [132] and the previously referred to report of the Family Law Council. [133]

Irrespective of the source of the data, the following comments apply:

  • caution should be exercised in its analysis and interpretation. There may have been changes since data collection began in 1987 to the ways in which procedures are identified and coded for data collection purposes;
  • other deficiencies, including inconsistencies between categorical data and totals are evident, indicating problems with its quality; [134]
  • it does not identify the conditions which led to the procedures being performed, or the purpose for the procedure. There is no listed indication whether the procedure was carried out to treat disease (eg cancer), to manage fertility and contraception, or to eliminate menstruation for ‘menstrual management’ reasons;
  • it does not identify whether the child or young woman on whom the procedure was performed has an intellectual, physical or sensory disability;
  • it is counted by numbers of recorded procedures per financial year.

The Health Insurance Commission (HIC) data

The HIC is a Commonwealth statutory authority under the Health Insurance Commission Act 1973. Its function is to:

  • administer the Australian national health insurance program;
  • operate the private health insurance fund Medibank private; and
  • administer the payment of benefits under the government’s medicare program, PBS schemes and Childcare Cash Rebate Scheme [135]

The HIC data:

  • identifies only those procedures which qualify for a medicare benefit and for which a medicare claim has been processed; and
  • includes services provided to private patients in public hospitals and uninsured patients in private hospitals; and
  • excludes services provided by hospital doctors to public patients in public hospitals.

For these reasons the HIC data may well represent a significant underestimate of the total numbers of sterilisation procedures carried out in all hospitals. Furthermore, there is persistent anecdotal evidence including off the record comments by medical practitioners, other service providers and family members that sterilisation procedures are sometimes listed, for example, as appendectomies, and are therefore not included. [136]

Additionally, the HIC data:

  • is sourced for the 1987-94 years from the two research reports mentioned above;
  • covers different age ranges in the different sources of information. The age range varies from 0-19 years in An Analysis of Australian Policy , 0-20 years in the report of the Family Law Council, and 0-17 years in the 1995-97 figures;
  • in respect of the years 1995-97 is not necessarily representative of all sterilisation procedures but is limited to specified item numbers for hysterectomy, tubal ligation, and endometrial ablation;
  • does not (in any year) include laparoscopic sterilisations;
  • has only included numbers on endometrial ablation since 1992. Endometrial ablation is a relatively new procedure;
  • does not distinguish between the removal of one ovary, which is not a sterilisation procedure, and the removal of both ovaries (bi-lateral oophorectomy), which is. For this reason ovarian procedures are not counted as sterilisation procedures, though they include an unknown number (of bi-lateral oophorectomies) which are. [137] This is another reason why the given numbers of sterilisations may be underestimates.

The total number of sterilisation procedures performed on private patients aged 0-20 years is given in Table 5.1, and the number of ovarian procedures (including bi-lateral oophorectomies) in Table 5.2.

The Tables show the following:

  • the figures for the 1995-96 and 1996-97 financial years show a marked variation from previous years. It is likely that this reflects the way the procedures have been identified and counted, and therefore does not necessarily represent the true number of procedures undertaken (see Table 5.1);
  • the number of endometrial ablations is significant. In 1994 Carlson predicted that “as hysterectomies decline in numbers, there may be an increase in endometrial ablation or resection procedures” [138] (see table 5.1);
  • there is an on-going trend in the use of ablations but they too are dropping in numbers post 1995. It is interesting to note that there has been a marked and consistent decrease in the number of ovarian procedures since 1987. Improved technology may account for the decrease, or changes to the surgical preference for these procedures (see Table 5.2).
  • the Northern Territory and Tasmania appear to have significantly higher rates for ovarian type procedures per capita than other states except for Victoria (see Table 5.3). They do however have significantly lower rates for hysterectomy and tubal ligation (see Table 5.4).

A table showing the total of sterilisation procedures as private patients for females aged 0-20 years in Australia

A table showing the total of ovarian procedures as private patients for females aged 0-20 years in Australia

A table showing Rates of ovarian procedures for females aged 0 to 19 years as private patients by State/Territory, 1993-94

A table showing Rates of sterilisation procedures for females aged 0 to 18 years, as private patients by State/Territory, 1993/94

In summary, the HIC data records that since 1987 there have been:

  • a total of 1358 sterilisations of children (by hysterectomy, tubal ligation and endometrial ablation), including 1045 since Marion’s Case in 1992; and
  • a total of 2658 ovarian procedures (including bi-lateral oophorectomy), including 856 since Marion’s Case in 1992.

For the reasons given above these figures are very likely to be a significant under estimate of the true numbers.

The Australian Institute of Health and Welfare (AIHW) data

The Australian Institute of Health and Welfare (AIHW) published a report in June 1997 on Australian hospital statistics which includes both public and private hospitals. [139] The report is it’s first publication presenting national data according to the reported principal diagnosis and procedure for hospital admission and treatment.

It lists hysterectomy, tubal ligation, and ablations of the uterus as principal procedures. The national Health Data Dictionary defines principal procedures as the most significant procedure that was performed for the treatment of the principal diagnosis. A principal procedure is defined as one that is surgical in nature, carries a procedural risk, carries an anaesthetic risk, requires specialist training, and requires special facilities or equipment only available in an acute hospital setting.

The AIHW data does not provide state by state breakdowns. It records [140] that across Australia during financial year 1995-96:

  • 61 total abdominal hysterectomy and 37 vaginal hysterectomy procedures were performed, a total of 98 hysterectomy procedures on patients in the 15-24 age group;
  • 565 tubal ligation procedures were performed on patients in the 15-24 age group;
  • 1276 ‘procedures on ovaries’ were performed on patients in the 15-24 age group. There is however no indication how many of these were bi-lateral oophorectomies (and therefore sterilisation procedures).

It should be noted with the AIHW as with the HIC data that there is persistent anecdotal evidence that some sterilisation procedures performed on girls may be being disguised as other procedures (with appendectomy being recorded as the principal procedure, for example). The prevalence of the practice is not known but if it is true that it is occurring then the AIHW data, like the HIC data, will underestimate the true numbers of sterilisations of girls.

A comparison between the HIC and AIHW data

The difference between the AIHW and the HIC data is that the HIC data excludes services provided by hospital doctors to public patients in public hospitals.

Comparing the two sets of data with this in mind suggests some tentative but interesting conclusions. For example:

  • the AIHW data records 98 hysterectomies being performed on 15-24 year olds during 1995/96. Assuming that the clinical indications do not vary significantly between 15 and 24 year olds [141], these figures suggest that approximately 37 hysterectomies were performed on 15 to 18 year olds. This compares with the figure of 9 recorded in the HIC data for 1995/96 (see Table 5.1);
  • the AIHW data records 565 tubal ligations being performed on 15 to 24 year olds during 1995/96, suggesting (on the same assumption, less safe in this instance [142]) that approximately 226 were performed on 15 to 18 year olds, comparing with the figure of 7 recorded in the HIC data for 1995/96 (see Table 5.1);
  • the AIHW data records 1276 ovarian procedures being performed on 15 to 24 year olds during 1995/96, suggesting (on the same assumption) that approximately 524 were performed on 15 to 18 year olds, comparing with the 117 recorded in the HIC data for 1995/96 (See Table 5.2).

While these comparisons are at best indicative, they warrant close examination and suggest that:

  • the HIC data is as previously suggested a significant under-estimate of the true numbers, perhaps by a factor of several times; and
  • sterilisation procedures are being performed in significant numbers on public patients in public hospitals.

Commentary

The HIC data shows a significant variation in the rates of sterilisation of girls as private patients across the states and territories (See Table 5.4). This invites the interesting question of how the variation might be explained.

West has made the point that:
“geographical differences in the rate of hysterectomy strengthen the argument that doctors, not disease, determine who end up on the operating table … the American College of Obstetrics and Gynaecology concluded in 1979 (the last time the matter was studied) that the disparities were due to ‘differences in the training of physicians, the style of medical practice and the availability of gynaecologists and hospital beds per capita’.” [143]

Caution must be exercised however in making any assumption that the state by state disparities shown in the HIC data reflect disparities in the true numbers of sterilisations of children state by state. The HIC data excludes sterilisations performed by hospital doctors on public patients in public hospitals, and so could be misleading. It is known, for example, that:

  • private hospitals provide approximately 25% of hospital beds in Australia, with the percentages varying from state to state [144];
  • approximately 20% of private hospital beds are occupied by uninsured patients, with the percentages varying from state to state [145];
  • approximately 10% of public hospital beds are occupied by private patients, with the percentages varying from state to state [146]; and
  • private patients in public hospitals often receive preferential access to elective surgery. [147]

A table showing Rates of type of surgeon by State/Territory, 3rd November 1997

The health services picture is therefore very complex and due caution is required in assigning trends, particularly state by state based upon the HIC data.

It may however be useful to compare state by state the variations in the rate of sterilisation of children shown in the HIC data with the per capita numbers of specialists most likely to be involved in sterilisation of girls (general surgery, paediatric surgery, and obstetrics and gynaecology) – see Table 5.5; the rates of private health insurance cover – see Table 5.6; the comparative numbers of private and public hospital beds – see Table 5.6; and the total number of hospital beds per capita – see table 5.6.

Given the earlier observation (in Chapter 3) about applications to courts and tribunals for authorisation of sterilisation which have been successfully diverted after the parents of the intellectually disabled girls concerned were introduced to support services, it may be useful also to make a comparison with state by state spending on services to people with disability and their families – see Table 5.7.

A table showing Private health insurance, numbers of private and public hospital beds and total bed numbers per capita by State

A table showing Disability expenditure by State, 1993-94, (including aged and disability services)

The comparisons show that:

  • there is an interesting but incomplete correlation between the rates of sterilisation of girls as private patients and the per capita numbers of obstetricians and gynaecologists. Of all the states, Victoria and SA have the highest rates of sterilisation and the highest per capita numbers of obstetricians and gynaecologists; Tasmania and NSW the lowest rates of sterilisation and the second and third lowest per capita numbers of obstetricians and gynaecologists; and WA a slightly lower than average rate of sterilisation and a slightly lower than average per capita number of obstetricians and gynaecologists. The odd state out is Queensland which has a comparatively high rate of sterilisation but the lowest per capita number of obstetricians and gynaecologists.
  • there is no apparent correlation between the rates of sterilisation of girls as private patients and rates of private health insurance cover. NSW and Tasmania both have comparatively high rates of private insurance cover but comparatively low rates of sterilisation, while Queensland and SA both have comparatively low rates of private insurance cover but comparatively high rates of sterilisation.
  • there is some correlation between the rates of sterilisation of girls as private patients and the relative numbers of private as opposed to public hospital beds. NSW, Tasmania and the ACT each have comparatively low rates of sterilisation and a comparatively low percentage of private hospital beds, while Victoria and Queensland both have comparatively high rates of sterilisation and comparatively high percentages of private hospital beds (though only slightly in Queensland’s case). However WA has a slightly lower rate of sterilisation and a comparatively high percentage of private hospital beds, and SA has a comparatively high rate of sterilisation and a comparatively low percentage of private hospital beds.
  • there is no apparent correlation between rates of sterilisation of girls as private patients and the total hospital bed numbers per capita. Victoria and SA both have comparatively high rates of sterilisation and comparatively high bed numbers, and NSW has comparatively low rates of sterilisation and comparatively low bed numbers. However, Tasmania has a comparatively low rates of sterilisation and comparatively high bed numbers, and Queensland has comparatively high rates of sterilisation and comparatively low bed numbers.
  • there is no apparent correlation between rates of sterilisation of girls as private patients and spending on services to people with disability. Queensland has a comparatively high rate of sterilisation and comparatively low spending on disability services. However Victoria and SA both have comparatively high rates of sterilisation and comparatively high spending, Tasmania has a comparatively low rate of sterilisation and comparatively high spending, and NSW has comparatively low rates of sterilisation and comparatively low spending.

Summary

Since 1987 at least 1358 girls have been sterilised, 1045 of them since Marion’s Case in 1992. This figure is a significant underestimate, perhaps by a factor of several times. It represents only those sterilisations for which a medicare claim has been processed.

It excludes sterilisations carried out other than by hysterectomy, tubal ligation and endometrial ablation.

It excludes what are in all likelihood significant numbers of sterilisations carried out by hospital doctors on girls who were public patients in public hospitals.

It appears on the HIC data that there is significant variation across states in the rates at which children are sterilised, and that none of the usual health services indicators which can illustrate variations apply. The state by state profiles are very complex and require further examination.


Summary

The legal framework regulating sterilisation of children in Australia was set out by the High Court in Marion’s Case in 1992. It sought to ensure heightened accountability in decision making in an area where children are at significant risk of grave abuse of their fundamental human right to bodily integrity. It held that:

  • court or tribunal authority is required before any child can lawfully be sterilised unless the sterilisation occurs as a by-product of surgery appropriately carried out to treat some malfunction or disease; and
  • authorisation may be given only if sterilisation is in the child’s best interests after alternative and less invasive procedures have all failed or it is certain that no other procedure or treatment will work.

Courts and tribunals have authorised a total of 17 sterilisations of girls since Marion’s Case. Meanwhile, data collated by the Health Insurance Commission shows that at least 1045 girls have been sterilised over this same period, and this figure counts only those sterilisations which qualify for a medicare benefit and for which a claim has been processed. It excludes sterilisations carried out by hospital doctors on public patients in public hospitals. Comparisons with other data sources suggest that the true number is much greater, perhaps by a factor of several times.

The law has failed to ensure these children the heightened accountability they are owed, and without any doubt most were sterilised unlawfully. The facts are clear:

  • disease of the reproductive tract is a very rare occurrence in girls, and no less rare in girls with intellectual disability. It follows that very few of these girls were sterilised genuinely ‘as a by product of surgery appropriately carried out to treat some malfunction or disease.’ The sterilisations of the vast majority were unlawful because they were not authorised by a court or tribunal;
  • sterilisation in the absence of malfunction or disease may sometimes be the option of genuine last resort, but this too is a rare occurrence. There are almost always less invasive alternatives of both medical and non-medical kinds, and they work with few exceptions. The sterilisations of the vast majority were unlawful because without any doubt alternative and less invasive options had not been exhausted.

The law has failed to protect significant numbers of children from significant abuse of their fundamental human right to bodily integrity. Worse, the community has aided and abetted that abuse by funding it – all the 1045 sterilisations which are identified can be identified only because they were ‘services which qualify for medicare benefit,’ and the many more, perhaps several times more, are in the main ‘services provided by hospital doctors to public patients in public hospitals.’

How can this be?

  • It is possible that there is widespread ignorance of the law within the medical community, but not likely. Key professional bodies such as the Australian Medical Association, the Royal Australian College of Obstetricians and Gynaecologists, the Australian College of Paediatrics, and others all made submissions to major law reform inquiries including that of the Family Law Council and the Law Reform Commission of Western Australia. The issue has been debated extensively in medico-legal forums.
  • Furthermore, the issue of sterilisation of children has received extensive coverage in the mass media including documentaries and discussions on television and radio. The print media has carried regular feature articles and news items in every State (a representative sample is listed in Appendix 1) for well over a decade.
  • It is possible that the law is insufficiently clear. Both the Family Law Council and the Law Reform Commission of Western Australia have argued that the distinction between therapeutic and non-therapeutic sterilisations is too uncertain a test of which matters require court authorisation. They have both argued also that the best interests test needs to be spelt out to give decision makers guidance in its application. However, ethical professional practice and simple prudence can of themselves ensure the heightened accountability the High Court sought to achieve through these tests.
  • Court or tribunal determination of whether any proposed sterilisation is lawful and in a girl’s best interests can be assured simply by medical practitioners and hospital administrators making sure that none but indisputably therapeutic procedures are performed without court or tribunal authorisation. Legislative reform is urgent and over due if medical professionals can’t or won’t address these issues themselves through self regulatory frameworks specifying ethical and professional best practice (for an example see Appendix 3).
  • It is possible also that the law is being deliberately flouted, motivated in particular by the financial burdens on families of the requirement to seek court authorisation. There is anecdotal evidence to this effect. The High Court itself drew attention to this issue in Marion’s Case when it urged legislative reform for this reason. It is without doubt a significant disincentive to achieving heightened accountability in decision making about the sterilisation of children.

These matters require urgent attention in the best interests of significant numbers of children whose human rights have been and continue to be abused in fundamental ways. The issue of law reform has been on the agenda of the Standing Committee of Attorneys General since Marion. It requires only the political will to bring it to conclusion.


Appendix 1: Various newspaper articles on sterilisation

AAP. (1997, Sunday 9th February). Doc’s rules to protect kids. Sunday Mail, p. 2.

Campbell, R. (1994, 4th May). Judge rejects a plan to sterilise disabled girl. Canberra Times, p. 3.

Carter, H. (1997, 15th April). Disabled girls illegally sterilised. The Advertiser, p. 3.

Carter, H. (1997, 15 April). Secret Sterile fate for girls. Herald Sun. pp. 1 and 2.

Cassidy, A. (1996, 10th July). Girls being sterilised – researcher. Perth Daily.

Clack, PA. (1997, 17th April). disabled girls are sterilised report. Canberra Times, p. 4.

Cooper, C. (1996, 7th July). A mother’s moral dilemma. South Australian, front page.

Editor, (1997, 17th February). Parents tire waiting for help. Courier Mail, p. 12.

Farouque, F. (1997, 16th April). State to investigate sterilisation claim. The Age, p. 3.

Hammond, P. (1993, 8th May). Handicapped girls under nine illegally sterilised. Courier Mail.

Hastings, E. (1996, 24th April). Pushing the door open on disability. The Age, p 15.

Horin, A. (1994, 20th December). Disabled girl can be sterilised, says the court. The Sydney Morning Herald, p. 5.

Innes, P. (1990, 7th December). Judges split on parent’s right to decide on sterilisation. The Age.

Innes, P. (1992, 29th May). Courts in future will have the final say on sterilisation of minors. The Age, p. 13.

Koch, T. (1997, Saturday 8th February). Doctors flout sterilisation law. The Courier Mail. p.4

Koch, T. (1997, 12th February). Inquiry into woman’s sterilisation. The Courier Mail, pp. 1.

Koch, T. (1997, 13th February). Police seek details of sterilisation of girl 12. The Courier Mail, p. 5.

Lovell, D. (1994, 8th July). Call for tighter controls. The Weekend Independent, p. 12.

Lovell, D. (1994, 8th July). A decision for the parents, mother insists. The Weekend Independent, p. 13.

Lovell, D. (1994, 8th July). Sterilisation..in her best interest? The Weekend Independent.

Laws, J. (1996, 13th August). Sterilisation is the kind option. The Sunday Telegraph.

Meryment, E. (1996, 9th July). Disabled Tots ‘made sterile’. The Courier Mail, p.3.

Papadopoulos, N. (1996, 22nd June). Judge agrees to hysterectomy for retarded girl. The Sydney Morning Herald, p. 2.

Parker, P. S. (1997, 18th February). Child comes before carers. The Courier Mail.

Pirrie, M. (1993, 7th July). Family law 1st world congress – Court fails disabled on sterilisation. The Herald Sun, p. 9.

Pitt, H. (1988, 23rd December). Court at odds over who has right to decide for the disabled. The Sydney Morning Herald.

Ruddy, B. (1989, 19th July). Court set to rule on girl’s sex op. The Courier Mail, p. 13.

Skene, L. (1992, 14th May). When a child needs to be sterilised. The Age, p.12.

Smith, D. (1996, 8th July). Hundreds of Disabled Girls are Illegally Sterilised: Researcher. The Sydney Morning Herald, front page.

Smith, D. (1996, 8th July). Sterilisation; a case for and against. The Sydney Morning Herald.

Smith, D. (1996, 8th July). What Price A Womb? The Sydney Morning Herald.

Solomon, D. (1992, 7th May). Judges limit sterilisation of children. The Australian, p. 3.

Stone, D. (1992, 10th May). Sterilisation decision now up to a judge. The Sunday Age, p. 9.

Sweet, M. (1997, 16th April). Court warns doctors on illegal sterilisation. The Sydney Morning Herald, p. 1.

syndicated. (1992, 7th May). No sterilisation without court approval. The Canberra Times, p. 5.

syndicated. (1992, 16th May). WEL wants sterilisation law updated. The Cairns Post, p. 15.

syndicated. (1994, 21st April). Bid to sterilise girl approved. The West Australian, p. 7.

syndicated. (1997, 16th April). Hundreds sterilised unlawfully. The Age, p. 9.

syndicated. (1997, 16 April). Probe urged on sterilising girls. The Courier Mail, p.8.

syndicated, (1997, 16th April). Sterilisation of intellectually disabled girls ‘flout the law’. The Queensland Times, p. 17.


Appendix 2: Rates of reproductive cancers in young females

The AIHW data examines hospital admissions for principal and diagnosed conditions for reproductive tract cancers in the total female population. It does not provide age breakdowns. It records that the national rate:

  • for cancer of the cervix uteri is 0.1 per 1000 population;
  • for cancer of the uterus is 0.1 per 1000 population; and
  • for other cancers of the genital organs (not specified) is 0.2 per 1000 population.[148]

The rates for children and young women would be expected to be lower given that cancer and disease of the reproductive tract is exceedingly rare in this population.

The incidence of procedures on ovaries which relate to disease like cancer are exceedingly rare, however cysts on or torsion of the ovaries is not as rare in this population. In this context it is interesting to note also the marked drop in the number of procedures on the ovaries recorded in the HIC data (See Table 5.2).

The numbers of procedures on ovaries recorded in the HIC and AIHW data is of concern even though there has been over recent years a marked decrease in this age group.

The incidence of ovarian cancer in Victoria in 1994 in less than 20 year olds was a total of 3. Ovarian cancer in this age group is of the type that usually does not require bi-lateral oophorectomy as it tends to respond well to chemotherapy. As noted in chapter 3 one or both ovaries are not removed if they fail as a result of chemotherapy.

The rate of cervical cancer in the age group 20-24 years in Victoria in 1994 was 6 cases. These cases would be likely to have the procedure of radical hysterectomy.

The cumulative rate for cancer of the endometrium (lining of the uterus) is 1.5 per 100,000 of the population. the rate would be expected to be exceedingly low in the 0-20 years age group.

Rates of cancer across States is not expected to be different in ways other than related to demographic differences such as age distribution (ie; the older the population the higher the incidence of cancer rates).

Source; Canstat (1997) Cancer in Victoria 1994, Anti- Cancer Council, Victoria, Canstat No. 25.


Appendix 3: Source: Paediatrics Vol. 85 No. 5 May 1990 Page 868

American Academy of Paediatrics: Sterilisation of Women Who Are Mentally Handicapped

The Committee of Bioethics endorsed the American College of Obstetricians and Gynaecologists statement of principle and practice on the sterilisation of mentally handicapped women. The American Academy of Paediatrics reinforced and reiterated the following principles:

With rare exception, there is no indication for sterilisation of a child before menarche. An example is when sterilisation is not intended, but is an unavoidable consequence of other surgery, such as surgery for a malignancy.

The primary or contributing indications for sterilisation (particularly surgical sterilisation) based on presumed or anticipated hardships to others must be viewed with great reservation and in light of acceptable alternate care arrangements which might be made for the mentally retarded individual. The judgement of “hardship” is extremely subjective and must not be simply a matter of inconvenience or a preference for the easier of two alternatives.

When sterilisation or pharmacological control of menses is chosen after the appropriate informed deliberations and attempts at obtaining consent, the paediatrician should always advocate the least permanent and intrusive methodology consistent with lowest risk for the patient. Present and future research and clinical trials may very well make newer forms of chemical contraception or pharmacological amenorrhoea preferable to surgical sterilisation.

Even if satisfactory informed consent cannot be provided by the patient, all efforts must be made to communicate the procedure and intent of the planned intervention of the patient; estimations of the patient’s ability to comprehend and participate in the decision-making process should be done by personnel who are familiar with the individual patient and whoa re experienced in communication with persons with diminished mental capacity. The individual’s capacity to participate in decision-making concerning sterilisation is determined both by the degree of overall mental impairment and by the individual’s profile of specific capabilities. Persons with serious impairment in some areas of mental function may still be able to participate in decisions affecting their reproduction.


Selected Bibliography

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Baladerian, N. (1994). Abuse of Children and Adults with Disabilities- A Prevention and Intervention Guidebook for Parents and Other Advocates . Culver City, CA: Disability Abuse and personal Rights project.

Baldwin, D., D, & Landa, H. (1995a). Common Problems in Pediatric Gynecology. Urologic Clinics of North America, 22(1), pp. 161-176.

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Beange, H. (1996). Caring for a Vulnerable Population. Medical Journal Of Australia (164), pp. 159-160.

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Family Education Unit Inc. (1989). Management of Menstruation and Related Issues. (Vol. Kit No.8). North Ryde, NSW

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Ferster, E Z. (1996). Eliminating the Unfit – Is Sterilisation the Answer?, Ohio State Law Journal (10), pp. 591-631

Fliegner, J. R., & Pepperell, R. (1994). Management of vaginal agenesis with functioning uterus. Is hysterectomy advisable? Australian New Zealand Journal of Obstetrics and Gynaecology, 34(4), pp. 467-70.

Ford, J (1996). The Sterilisation of Young Women with Intellectual Disability, Australian Journal of Family Law (10), p. 236

Fryers, J. (1993). Epidemiological thinking in mental retardation : Issues in taxonomy and population frequency. International Review of Research in Mental Retardation (19), pp. 97-133.

Goldhar, J. (1991). The Sterilisation of Women with an Intellectual Disability, University of Tasmania Law Review (10), pp. 157-195

Goldstein, H., M. (1988). Menarche, Menstruation, Sexual relations, and Contraception of Adolescent Females with Down Syndrome,. European Journal of Obstetrics Gynecology and Reproductive Biology (27), pp. 343-349.

Grant, C & Lapsley H M. (1993). The Australian Health Care System, School of Health Services Management, University of NSW, Kensington.

Grover, S. (1997). Menstrual and contraceptive management for women with intellectual disabilities. Royal Australian College of Obstetricians and Gynaecologists Bulletin, 11(2), pp. 12-14.

Grover, S., (1997). A Ten year Clinical Review of Ovarian Pathology at the Royal Children’s Hospital Melbourne : unpublished.

Grover, S., (1997).. Menstrual and contraceptive management for women with an intellectual disability. Paper presented at the Royal Australian and Royal New Zealand Colleges of Obstetricians and Gynaecologists combined Scientific Meeting, Brisbane.

Hamish, W., Wallace, B., & Kelnar, J. (1996). Late effects of antineoplastic therapy in childhood on growth and endocrine function. Drug safety, 15(5), pp. 325-332.

Hamre-Neitupski, S., & Williams, W. (1977). Implementation of selected Sex Education and Social Skills to Severely Handicapped Students. Education and Training of the Mentally Retarded, 12(4), pp. 364-372.

Hancock, L. (1993). Defensive Medicine and Informed consent., Canberra: Australian Government Publishing Service.

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Hufnagel, V. (1988). No More Hysterectomies. Wellingborough, England: Thorston Publishers.

Imai, A., Furui, T., & Tamaya, T. (1994). Gynecologoic tumours and symptoms in childhood and adolescence:10 years experience. Int J Gynecol Obstet (45), pp. 227-234.

Inter-Jurisdictional Committee on Guardianship and Financial Management for Adults with Disabilities (1994) Response to Family Law Council Discussion Paper – Sterilisation and Other Medical Procedures on Children.

Kaur, H., Butler, J., & Trumble, S., (1995). Menstrual Management and Women with an Intellectual Disability – A Guide for GP’s . Melbourne: Developmental Disability Unit, Department of Community Medicine & General Practice, Monash University.

Kaur, H., Butler, J., & Trumble, S.,(1995). Options for menstrual management – Resources and Information for Staff and Carers of Women with an Intellectual Disability. Melbourne: Developmental Disability Unit Department of Community Medicine and General Practice, Monash University.

Larking, L. (1992). A Study of the Law of Consent in Relation to Medical Practitioners, Their Patients and Partners, in the Area of Contraceptive Sterilisation Procedures. Unpublished Arts Honours, University of Melbourne, Melbourne.

Laws, S. (1990). Issues of Blood : The Politics of Menstruation: Houndmills : Macmillan.

Lennox, NG (1996) Medical Education and Intellectual Disability : A Survey of Australian Medical Schools, unpublished

Logue, C., & Moos, R. (1988). Positive Peri-Menstrual Changes: towards a new perspective on the menstrual cycle. Journal of Psychosomatic Research, 12(1), pp. 31-40.

Melita, B., Bartak, L., Nyberg, E., & Armstrong, J. (1992). Report to the Minister for Community Services Victoria on Menstrual Suppressants (Report to minister and Recommendations ). Melbourne: Intellectual Disability Review Panel.

Moen, M., Cliby, W., & Wilson, T. (1993). Case report – Stage III papillary Serous Cystadenocarcinoma of the ovary in a 15 year old female. Gynecologic Oncology (53), pp.274-276.

Monaghan, J. M.(1996). Less invasive surgery for gynecologic tumors. Current Opinion in Oncology, 8(5), pp. 402-406.

O.Neill, N. (1996). Sterilisation of Children with Intellectual Disabilities. Australian Journal of Human Rights, 2(2).

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Office of Technology Assessment. (1992). The Menopause, Hormone Therapy and Women’s Health. Washington: United States Congress.

Oliver, M., & Boyds, G. (1987). Effect of bilateral ovariectomy on coronary artery disease and serum lipid levels. Lancet, ii, pp. 16-24.

Punnonen, R., Ikalainan, M., & Seppala, E. (1987). Premenstrual Hysterectomy and the Risk of Cardio-Vascular Disease. The Lancet, May (16), p. 1139.

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Taylor, M., Carlson, G., Griffen, J., & Wilson, J. (1995). Managing Menstruation. (3rd ed) Brisbane: Queensland Department of Families Youth and Community Care.

Tasmanian Department of Education and the Arts. (1994). Draft Statement on Menstrual Management and Fertility Management for Girls and Women with Intellectual Disabilities. : Special Education Committee.

Trumble, S., Dr. (1992). Menstrual Suppression in Women with Intellectual Disabilities (unpublished). Melbourne: Department of Community Medicine Monash University.

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Watson, N., Studd, J., Garnett, T., Savvas, M., & Milligan, P. (1995). Bone loss after hysterectomy with ovarian conservation. Obstetrics and Gynecology (86), pp. 72-77.

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West, S (1994) The Hysterectomy Hoax, DoubleDay, New York

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Endnotes

[1] For a comprehensive discussion of that issue, see Melita et al (1992) Report to the Minister for Community Services, Victoria on Menstrual Suppressants. That report describes the widespread, indeed in some instances blanket administration of drugs causing menstrual suppression to girls and women with intellectual disability in Victorian institutions, whether or not it was required for contraceptive purposes and without routine gynaecological screening. It was administered for the convenience of staff. Reforms have occurred.

[2] Walsh , James., (1997) Unnatural selection, Time Magazine, 22 September. Pp90-92

[3] The term eugenics is derived from a Greek word meaning “well born”.

[4] Goldhar,J.,(1991) The Sterilisation of Women with an Intellectual Disability”, University of Tasmania Law Review, 10, p174.

[5] ibid,p 170

[6] Ferster, EZ.,(1966) Eliminating the Unfit – Is Sterilisation the Answer? Ohio State Law Journal 10, p.599

[7] Re: Eve (1986) 31 DLR (4th) 1. 32.

[8] See appendix 1 for the most recent national press reportage of the sterilisation debate.

[9] Taylor,M., Carlson, G., & Wilson,J., (1995) Managing Menstruation. (3rd ed) Brisbane. Queensland Department of Families Youth and Community Care.

[10] Brady,SM, (1995) The Rights of the Child to Be Heard -Potential Hearing Impairments in the Legal Process , Proceedings 29th Australian Legal Convention, Australian Law Council, Brisbane pp. 101-117

[11] Berry,L & Zimmerman,W (1983) The Stage Model Revisited, Rehabilitation Literature (44),pp 275-277; Scieffert,A (1978) Parent Initial Reactions to having a mentally retarded Child:A Concept & Model for Social Workers, Clinical Social Work Journal(6), pp33-43.

[12] Beange,H.,(1996) Caring for a Vulnerable Population, Medical Journal of Australia, 164, pp 159-160 ; Beange,H.,(1986) The Medical Model revisited, Australian and New Zealand Journal of Developmental Disabilities, 12, pp3-7; Beange,H.,(1993) Report on a Survey of Medical Disorders in Intellectually Disabled Adults, Sydney:Commonwealth Department of Community Services and Health.

[13] See Brady 1995 for a full extract of the case and a discussion.

[14] The Law Reform Commission of Western Australia (1994) Report on Consent to the Sterilisation Of Minors.

[15] Family Law Council (1994) Sterilisation and Other Medical Procedures on Children, Report to the Attorney-General, Canberra.

[16]Secretary, Dept of Community Services and Health v JWB and SMB, 1992 CLR 218

[17] Re a Teenager, 1988 13 FamLR 85; and In Re S, 1989 13 FamLR 660.

[18] Re Jane, 1988 12 FamLR 662; and Re Elisabeth, 1989 13 FamLR 47.

[19] Gillick v West Norfolk and Wisbech Area Health Authority, [1986] AC 112, adopted in Marion at Pp 236-237.

[20] Marion, at PP 239-240.

[21] Marion, at P 250.

[22] Marion, at P 250.

[23] Marion, at P 268.

[24] Marion, at P 259.

[25] Marion, at P 270-272.

[26] Marion, at P 260.

[27] Marion, at P 259-260.

[28] Marion, at P 250.

[29] Marion, at P 250.

[30] Marion, at P 253.

[31] Marion, at P 266.

[32] Marion, at P 250-252.

[33] Marion, at P 259.

[34] Marion, at P 261.

[35] PvP, 1994 120 ALR 545.

[36] This description does not take account of the complexities relating to ex-nuptial children. For more detailed description, refer to the discussion in Family Law Council, 1994 at pp 29-32 and The Law Reform Commission of Western Australia, 1994 at pp. 53-55.

[37] Ibid, but especially The Law Reform Commission of Western Australia at pp 117-8.

[38] Marion, at P 253.

[39] Marion, at Pp 270-271

[40] PvP, at P 569

[41] Quoted by the Family Law Council at P 14

[42] Re Eve, 1986 31 DLR (4th) 1

[43] Marion, at P 262

[44] Carlson,G, Taylor,M., Wilson,J., and Griffen,J.,(1994) Menstrual Management and Fertility Management for Women who have Intellectual Disability and High Support Needs : Analysis of Australian Policy (2nd ed) Department of Social Work and Social Policy , University of Queensland.

[45] Family Law Council 1994, at P 52; Western Australian Law Reform Commission at Pp 78-84

[46] Family Law Council at P 53

[47] Western Australian Law Reform Commission at Pp 84-85

[48] Marion, at P 274. In his view, the distinction marks the boundary between those sterilisations which can lawfully be authorised (by parents) and those which can’t lawfully be authorised whether by courts or parents. Earlier, at P 269, he defined medical treatment as therapeutic “when it is administered for the chief purpose of preventing, removing or ameliorating a cosmetic deformity, a pathological condition or a psychiatric disorder, provided the treatment is appropriate for and proportionate to the purpose for which it is administered.”

[49] PvP, at P 553.

[50] Marion, at P 250.

[51] Marion, at Pp 296-297.

[52] Quoted in Western Australian Law Reform Commission at P 61

[53] Family Law Council, 1993

[54] Family Law Council, 1994 at p. 11

[55] Ibid., at pp 11, 12, and 13 respectively.

[56] Ibid., at pp 44-45.

[57] Ibid., at pp 93-94.

[58] The Chief Justice of the Family Court made the point when Marion’s Case returned to that jurisdiction after the High Court had settled the points of law: “Ironically enough, this case probably falls into the category of cases where the court’s consent is unnecessary since, on the facts as I have found them, the procedure was required for medical and therapeutic reasons. It was nevertheless both prudent and correct for the applicants to have sought the consent of the court, as this issue … could well have been the subject of controversy.” 1992 Fam LR 336 at P 355.

[59] Quoted in Family Law Council at P 11-12.

[60] Ibid., at P 12-13.

[61] Nicolson CJ rejected the ‘but for’ test in PvP No.2 (1994 19 FamLR 1), but that was as a test of whether sterilisation is in a child’s best interests. Here it is proposed not as a test of the child’s best interests, but of whether the sterilisation is or isn’t therapeutic (and hence of whether the question of the child’s best interests ought have the heightened accountability of going before a court or tribunal for determination).

[62] The Family Court of Australia in all states and territories, but with concurrent jurisdiction being exercised in SA by the Guardianship Board in NSW by the Guardianship Board and the Supreme Court in respect of children who are 16 or 17 years of age and under 16 years of age respectively.

[63] The reasoning applies not only to non-therapeutic sterilisations but to other ethically sensitive and / or disputed medical treatments also, giving rise to the Family Court’s “extended” or special medical procedures jurisdiction – see Brady, SM and Cooper, DM.,(1996) A Question of Right Treatment – Special Medical Procedures and the Family Court – An Introductory Guide, Family Court Publication, Melbourne.

[64] There are other risks which include osteoporosis, heart disease, bone and joint pain, fatigue, and dry skin and tissue. It can also impact upon mood and cause depression. Long term hormone replacement therapy (HRT) does not fully compensate for the functions of the ovaries.

[65] Disease at the sites of ovaries and uterus is very rare, genital tumours in girls and young adolescents are very rare, malignant lesions of the vulva are rare, include sarcoma’s, adenocarcnomas, and squamous cell carcinoma and tumours which result in bleeding are very uncommon congenital periurethral cysts are rare, both endometrial sinus tumour of the vagina and the cervix and cervical carcinoma are rare in the paediatric population, benign endometrial polyps and submucous myomas are uncommon causes of vaginal bleeding in children, and adenocarcimona is exceedingly rare , however, benign ovarian cysts are common in teenagers. if they are less than 6 cms in diameter there is no need for exploration. most genital tumours in girls are ovarian with one third of ovarian neoplasms in pre-menarche girls. See for further discussion; Baldwin & Landa, 1995.

[66] Hamish, W., Wallace, B., & Kelnar, J. (1996), Late effects of antineoplastic therapy in childhood on growth and endocrine function. Drug safety, 15(5), 325-332.

[67] Grover, S., Dr. (1997b), A Ten year Clinical Review of Ovarian Pathology at the Royal Children’s Hospital Melbourne : unpublished.

[68] There is a group of females with XY chromosome who have gonadectomies (the removal of residual non-functional gonadal tissue and in early utero the testes development fails so that the foetus develops as a female with uterus and vagina but no ovaries. This condition is known as gonadal dysgenesis and is rare. It could not account for the HIC numbers.

[69] Fliegner, J. R., & Pepperell, R. (1994), Management of vaginal agenesis with functioning uterus, Is hysterectomy advisable? Australian New Zealand Journal of Obstetrics and Gynaecology, 34(4), 467-70.

[70] Stein, J., Grover, S., Pickworth, F., & Stokes, K. (1995). Uterine Torsion masquerading as Hydrometrosalpynx. International Paediatric and Adolescent Gynaecology.

[71] Coupey, S. M., & Ahlstrom, P. (1989), Common Menstrual Disorders. Paediatric Clinics of North America, 36(3), 551-573.

[72] Abraham, S., Fraser, I., Gebski, V., Knoght, C., Lwelleyn-Jones, D., Mira, M., & McNeil, D. (1985). Menstruation, Menstrual Protection and Menstrual Cycle Problems : The Knowledge, Attitudes and Practices of Young Australian Women. Medical Journal of Australia, 142, 247-251; Baldwin, D., D, & Landa, H. (1995a). Common Problems in Paediatric Gynaecology. Urologic Clinics of North America, 22(1), 161-176; Carlson, G., Taylor, M., Wilson, J., & Griffin, J. (1994). Menstrual Management and Fertility Management for Women who have Intellectual Disability and High Support Needs : An Analysis of Australian Policy, Queensland: Department of Social Work and Social Policy, University of Queensland; Carlson, G., & Wilson, J. (1996). Menstrual management and Women who have Intellectual Disabilities : Service Providers and Decision-Making. Journal Intellectual Developmental Disability, 21, 39-57; Grover, S. (1997a), Menstrual and contraceptive management for women with intellectual disabilities, Royal Australian College of Obstetricians and Gynaecologists Bulletin, 11(2), 12-14; Grover, S. D. (1997c, April 1997), Menstrual and contraceptive management for women with an intellectual disability, Paper presented at the Royal Australian and Royal New Zealand Colleges of Obstetricians and Gynaecologists combined Scientific meeting, Brisbane.

[73] Excessive menstrual loss means soaking blood loss with pain, lasting 8-10 days every 16-18 days, and continuing over a significant time.

[74] Coupey 1989

[75] Dennerstein, L., Brown, J., Gotts, G., Morse, C., & Pinoi, A. (1993). Menstrual Cycle Hormonal Profiles of Women with and without Premenstrual Syndrome. Journal of Obstetrics and Gynaecology, 14, 259; Dennerstein, L., Wood, C., & Westmore, A. (1995). Hysterectomy : New Options and Advances. Melbourne: Oxford University Press; Dennestein, L. (1978). Gynaecology, Sex and Psyche. Melbourne: Melbourne University Press.

[76] Carlson et al., 1994; Carlson & Wilson, 1996; Office of Intellectual Disability Services. (1990). Menstrual Management Policy for Women with Intellectual Disabilities, Melbourne: Department of Community Services; Queensland Department of Families Youth and Community Care, (1995). The Menstrual Preparation and Management Kit, Brisbane: Department of Social Work and Social Policy, University of Queensland.

[77] Elkins, T., Gafford, L., Wilks, C., & al, e. (1985). A model clinic approach to the reproductive health concerns of the mentally handicapped. Obstet Gynecol, 68, 185-188; Goldstein, H., M. (1988). Menarche, Menstruation, Sexual Relations, and Contraception of Adolescent Females with Down Syndrome,. European Journal of Obstetrics Gynaecology and Reproductive Biology, 27, 343-349.

[78] Abraham et al., 1985. In some instances, however, puberty appears to be delayed due to low body weight – peronal observation Dr Sonia Grover, 1997.

[79] Coupey 1989

[80] Baldwin & Landa, 1995b; Fliegner & Pepperell, 1994; Goldstein, 1988; Grover, 1997b; Imai, A., Furui, T., & Tamaya, T. (1994), Gynaecologoic tumours and symptoms in childhood and adolescence:10 years experience, Int J Gynecol Obstet, 45, 227-234; Moen, M., Cliby, W., & Wilson, T. (1993). Case report – Stage III Papillary Serous Cystadenocarcinoma of the ovary in a 15 year old female. Gynecologic Oncology, 53, 274-276; Monaghan, J. M. M., (1996). Less invasive surgery for gynecologic tumours. Current Opinion in Oncology, 8(5), 402-406.

[81] Phobic responses to blood or smearing are considered to be problem behaviours. Phobic responses to blood loss are extremely rare and in most cases regarding young women with intellectual disabilities can be addressed through appropriate needs based behaviour management programs. Carlson 1994, 1996 comments that most young women will not have had pre menstruation education or received any menstrual support.

[82] Elkins et al., 1985

[83] Grover, S Menstrual and Contraceptive Management for Women with Intellectual Disability, Paper presented to the Combined Scientific Meeting of the Royal Australian and New Zealand Colleges of Obstetricians and Gynaecologists, 1997

[84] Ford, J 1996 The Sterilisation of Young Women with Intellectual Disability, Australian Journal of Family Law, 10, P.236 at P.245.

[85] Brady, S., 1996, Invasive and Irreversible, Alternative Law Journal, Volume 21, Number 4

[86] Carlson et al., 1994; Carlson & Wilson, 1996; Chamberlain, A., Rauh, J., Passer, A., McGrath, M., & Burket, R. (1984). Issues in fertility control for mentally retarded female adolescents:1. Sexual activity, sexual abuse and contraception. Paediatrics, 73(4), 445-450; Committee on Bioethics, A. A. O. P. (1990). Sterilisation of Women who are Mentally Handicapped. Paediatrics, 85(5), 868-871; Family Education Unit Inc. (1989). Management of Menstruation and Related Issues. (Vol. Kit No.8). North Ryde, NSW; Kaur, H., Butler, J., & Trumble, S., (1995a). Menstrual Management and Women with an Intellectual Disability – A Guide for GP’s . Melbourne: Developmental Disability Unit, Department of Community Medicine & General Practice, Monash University; Kaur, H., Butler, J., & Trumble, S., (1995b). Options for Menstrual Management – Resources and Information for Staff and Carers of Women with an Intellectual Disability. Melbourne: Developmental Disability Unit; Department of Community Medicine and General Practice, Monash University; O.Neill, N. (1996). Sterilisation of Children with Intellectual Disabilities. Australian Journal of Human Rights, 2(2); Office of Intellectual Disability Services, 1990; Queensland Department of Families Youth and Community Care, 1995; Richman, G., Reiss, M., & Bailey, J. (1984), Teaching Menstrual Care to Mentally Retarded Women: acquisition, generalisation, and maintenance. J Appl Behav Anal, 17(4), 441-451; Tasmanian Department of Education and the Arts. (1994). Draft Statement on Menstrual Management and Fertility Management for Girls and Women with Intellectual Disabilities. : Special Education Committee; Taylor, D. (1988). Red flower : Re-thinking Menstruation. California: The Crossing Press; Taylor, M., Carlson, G., Griffen, J., & Wilson, J. (1995). Managing Menstruation. (3rd edition ed.). Brisbane: Queensland Department of Families Youth and Community Care; Trumble, S., (1992). Menstrual Suppression in Women with Intellectual Disabilities unpublished.Melbourne: Department of Community Medicine Monash University; Villamanta Legal Service Inc. (1991). Submission to the Intellectual Disability Review Panel Review of Menstrual Suppressants Geelong.

[87] Grover, 1997a; Grover, 1997c

[88] Brady SM and Cooper DM, (1996). A Question of Right Treatment: The Family Court And Special Medical Procedures for Children – An Introductory Guide, Family Court Publication, Melbourne.

[89] Ibid.

[90] Dennerstein, L., Brown, J., Gotts, G., Morse, C., & Pinoi, A. (1993). Menstrual Cycle Hormonal Profiles of Women with and without Premenstrual Syndrome. Journal of Obstetrics and Gynaecology, 14, 259; Dennerstein, L., Wood, C., & Westmore, A. (1995). Hysterectomy : New Options and Advances. Melbourne: Oxford University Press; Grover (1991) Review of Menstrual Suppressants – a submission to the Intellectual Disability Review Panel, Victoria.

[91] Dennerstein et al., 1995

[92] Oliver, M., & Boyds, G. (1987). Effect of bilateral ovariectomy on coronary artery disease and serum lipid levels. Lancet, ii, 16-24; Syanberg, L., & B, A. (1975). On some late effects of bilateral oophorectomy in the age range of 15-30 years. Obstet Gynecol Scand, 54, 449-461; Siddle, N., Sarrel, P., & Whitehead, M. (1987). The effect of hysterectomy on the age at ovarian failure : identification of a subgroup of women with premature loss of ovarian function and literature review. Fert Steril, 47, 94-100; Watson, N., Studd, J., Garnett, T., Savvas, M., & Milligan, P. (1995). Bone loss after hysterectomy with ovarian conservation. Obstet Gynecol, 86, 72-77; Nishiyama, 1986 169; MG, 1991 175; Grover, 1997 115; Grover, 1997 112]

[93] Oliver & Boyds, 1987; Punnonen, R., Ikalainan, M., & Seppala, E. (1987). Premenstrual Hysterectomy and the Risk of Cardio-Vascular Disease. The Lancet, May(16), 1139.

[94] Office of Technology Assessment. (1992). The Menopause, Hormone Therapy and Women’s Health . Washington: United States Congress.

[95] Vaneslow, W., 1995, Paper presented to the Australian Society of Psychomatic Obstetrics and Gynaecology, Melbourne.

[96] Crawford, P. (1991). Catamenial Seizures : Women and Epilepsy, Women and Epilepsy . Chichester: Wiley and Sons Ltd.; Logue, C., & Moos, R. (1988). Positive Peri-Menstrual Changes: towards a new perspective on the menstrual cycle. Journal of Psychosomatic Research, 12(1), 31-40; Rosenfield, W., Doose, D., Walker, S., & Nayak, R. (1997). Effect of topiramate on the pharmacokinetics of an oral contraceptive containing norethindrone and ethinyl in patients with epilepsy. Epilepsia, 38(3), 317-323; Tauboll, E., Lundervold, A., & Gjerstad, L. (1991). Temporal distributions of seizures in epilepsy. Epilepsy-Res, 8(2), 153-65; Usiskin, S. (1991). The Woman with Epilepsy, Women and Epilepsy . Chichester, England: Wiley and Sons Ltd.

[97] Carlson 1994

[98] Kaur, H., Butler, J., & Trumble, S., (1995b). Options for menstrual management – Resources and Information for Staff and Carers of Women with an Intellectual Disability, Melbourne: Developmental Disability Unit, Department of Community Medicine and General Practice, Monash University; Melita, B., Bartak, L., Nyberg, E., & Armstrong, J. (1992). Report to the Minister for Community Services Victoria on Menstrual Suppressants, Melbourne: Intellectual Disability Review Panel; Office of Intellectual Disability Services, (1990), Menstrual Management Policy for Women with Intellectual Disabilities, Melbourne: Department of Community Services.

[99] Family Education Unit Inc. (1989). Management of Menstruation and Related Issues. (Vol. Kit No.8). North Ryde, NSW; Kaur et al., 1995a; Laws, S. (1990). Issues of Blood : The Politics of Menstruation: Houndmills:Macmillan; Logue & Moos, 1988; Office of Intellectual Disability Services, 1990; Queensland Department of Families Youth and Community Care, 1995; Snowden, R., & Christain, B. (1993). Patterns and Perceptions of Menstruation, Manuka, Australia: World Health Organisation.; Villamanta Legal Service Inc. (1991). Submission to the Intellectual Disability Review Panel Review of Menstrual Suppressants (submission ). Geelong.

[100] Melita, 1992; Sobsey, D., Gray, S., Wells, D., Pyper, D., & Reimer-Heck, b. (1991). Disability, sexuality and abuse : An annotated bibliography. Baltimore: Paul Brookes; Sobsey, D., & Mansell, S. (1990). The prevention of sexual abuse of people with developmental disabilities. Developmental Disabilities Bulletin, 18(2), 51-66; Villamanta Legal Service Inc, 1991; Chamberlain, A., Rauh, J., Passer, A., McGrath, M., & Burket, R. (1984a). Issues in fertility control for mentally retarded female adolescents:1. Sexual activity, sexual abuse and contraception. Paediatrics, 73(4), 445-450; Chamberlain, A., Rauh, K., McGrath, M., & Burket, R. (1984b). Issues in fertility control for mentally retarded female adolescents : Sexual Activity, Sexual Abuse and Contraception. Paediatrics, 73(4), 445-450.

[101] Hamre-Neitupski, S., & Williams, W. (1977). Implementation of Selected Sex Education and Social Skills to Severely Handicapped Students. Education and Training of the Mentally Retarded, 12(4), 364-372. There has been broad criticism of the mental age determinant regarding access to learning opportunities. Reasons for the criticism include the failure of service providers to consider whether or not attempts have been made to teach skills. This is in relation to a range of daily living skills but has profound consequences in human relations and protective behaviours education leaving young women with intellectual disabilities particularly vulnerable to sexual abuse.

[102] Baladerian, N. (1992). Treatment approaches for abuse victims who have developmental disabilities . Culver City,CA: Disability, Abuse and Rights Protection Project; Baladerian, N. (1994). Abuse of Children and Adults with Disabilities- A Prevention and Intervention Guidebook for Parents and Other Advocates. Culver City, CA: Disability Abuse and Personal Rights Project; Chamberlain, Rauh, Passer, McGrath, & Burket, 1984a; Chamberlain, Rauh, McGrath, & Burket, 1984b; Sobsey, Gray, Wells, Pyper, & Reimer-heck, 1991; Sobsey & Mansell, 1990

[103] Melita et al., 1992

[104] Dr N. Lennox, Developmental Disability Unit, Medical School, University of Queensland, in a personal communication reported that an international literature search identified only 16 cases of pregnancy in women with Down’s Syndrome.

[105] ABS population data No.3201.0 released January 1995, and ABS Welfare Section unpublished data sourced 30 June 1995. It is essential that the figures are recognised as only those people within households and does not represent those people living in institutional or hospital settings. The population as of 30 June 1994 was 17,843,300. The proportion of males at 49.8%. The proportion of females under 18 years is assessed at approximately 25% of the total being 2,238,200. A survey by ABS was conducted listing 17 criteria to distinguish disability, and a single criteria slow learning which can constitute developmental delay was screened. It was conceded that this criteria would only identify about 50% of the intellectually disabled population in this group. The national total of people categorised as slow learners was 139,900 of which approximately half or 61,500 are female. Crudely this constitutes approximately 19,800 females under 18 years.

[106] Xingyan Wen (1997) The Definition and Prevalence of Intellectual Disability in Australia, AIHW Cat. No.DIS2, Canberra; Fryers, J. (1993). Epidemiological thinking in mental retardation : Issues in taxonomy and population frequency. International Review of Research in Mental Retardation, 19, 97-133.

[107] Figures from the Office of the Public Advocate from 1987 to 1994 note 132 sterilisation applications, 20 termination applications and 40 cases involving protective services and foster care/adoption issues. Note that application rates do not indicate rates of consent to these matters. The cases include women with a range of statutory disabilities like mental illness, head injury and acquired brain damage, they are not cases exclusively related to women with intellectual disabilities. Many of the applications for sterilisation will also represent women who are beyond child-bearing age and the primary issue is needed gynaecological medical treatment for disease or malfunction.

[108] Committee on Bioethics, 1990; Hart, D S. (1978). A National Sterilisation Policy: No Consensus, Especially for the Mentally Incompetent. Family Planning/Population Reporter, 7(3), 45-49

[109] P V P (1994) 19 Fam LR 1 at 23

[110] Dennerstein, L., Gotts, G., Brown, J., Morse, C., Farley, T., & Pinol, A. (1994). The relationship between the menstrual cycle and female sexual interest. Psychoneuroendocrinlogy, 19(3), 293-304; Dennestein, 1978; Zussman,L (1991). Sexual response after hysterectomy-oophorectomy : recent studies and reconsideration of psychogenesis. American Journal of Obstetrics and Gynaecology, 40(7), 725-729; Dennerstein (1995) at p.6 says that contractions of the uterus may contribute to female experiences of orgasm, the cervix produces lubricative mucus especially apparent prior to ovulation and associated with increased interest in sex and less friction (painful sex) during intercourse.

[111] A broad range of readings which examine the issues of sterilisation from varying perspectives; Zussman, L. 1991; Carlson, 1994; Committee on Bioethics, 1990; Family Law Council, 1993; Dennestein, L, 1978; Elkins, 1985; Family Education Unit Inc, 1989; Grover, 1997c; Guthrie, 1986; Hamre-Neitupski, 1977; Hart, 1978; Hufnagel, V., (1988). No more hysterectomies. Wellingborough, England: Thorston Publishers; Kaur, 1995; Logue, 1988; Melita, 1992; Queensland Department of Families Youth and Community Care, 1995; Office of Intellectual Disability Services, 1990; Quinn, A., Barrett, T., Kingdom, J., & Murray, G. (1994). Relationship between hysterectomy and subsequent ovarian function in a district hospital population. J Obstet Gynaecol, 14, 103-107; Siddle, 1987.

[112] Carlson 1994 at page 12. Research has indicated the potential for increased morbidity rates in women who have had hysterectomies . Wood and Dennestein (1995) suggest that there may well be significant and long term health damage associated with removal of the uterus.

[113] For a more complete discussion, refer to chapter 2 above.

[114] Personal communication with Community Education Officer of the (SA) Office of the Public Advocate November 1997 and Annual Report 1995/96 of the (SA) Office of the Public Advocate at page 25

[115] Ibid.

[116] Inter-Jurisdictional Committee on Guardianship and Financial Management for Adults with Disabilities, Response to Family Law Council Discussion Paper – Sterilisation and other medical procedures on Children, March 1994 at page 14.

[117] CaseBase search, pink Ribbon Publishing Reed International Books t/a Butterworths, October 1997.

[118] JLS v JES – SCNSW., (1996) 20 Fam LR 485 before Bryson J.

[119] Personal communication from the Board’s Legal Officer, and the Board’s Registrar.

[120] Re: BW -FamCT (NSW) unreported 10 April 1995.

[121] Ford, J., 1996, The Sterilisation of Young Women with Intellectual Disability, Australian Journal of Family Law, 10, P. 236.

[122] Inter-Jurisdictional Committee on Guardianship and Financial Management for Adults with Disabilities, Response to Family Law Council Discussion Paper-Sterilisation and Other Medical Procedures on Children, 1994, Attachment A – “Profile of the Guardianship Board cases regarding Special medical Treatment – Sterilisation”.

[123] Carlson, 1994 ; Family Education Unit Inc, 1989; Queensland Department of Families Youth and Community Care, 1995.

[124] Inter-Jurisdictional Committee, at page 226

[125] Re L and M, (1993) 17 Fam LR 357 (known as Sarah’s case)

[126] Re A (a child) 1993 FLC 402, (known as Alanna’s Case).

[127] Public Advocate v GP and KP, 1994, ML 8841/93. (known as Michaels’ Case)

[128] GWW and CMW, FLC, HB 1447/96.

[129] Marion’s Case (no. 2).

[130] Re JW, heard by Brown J., Melbourne, 1995, unreported.

[131] Australian Institute of Health and Welfare. (1997). Australian Hospital Statistics 1995-96 (Health Services Series cat.no.HSE 3 no.10). Canberra: AIHW.

[132] Carlson, G., Taylor, M., Wilson, J., & Griffin, J. (1994). Menstrual Management and Fertility Management for Women who have Intellectual Disability and High Support Needs : An Analysis of Australian Policy (2nd edition). Queensland: Department of Social Work and Social Policy, University of Queensland.

[133] Family Law Council, (1993) Discussion Paper on Sterilisation and Other Medical Procedures on Children, Canberra.

[134] AIHW, ibid., at P.3.

[135] Hospital and Health Services Year 1997, Kompass Australia, Victoria. P.57

[136] Personal communication with disability advocacy groups.

[137] The removal of both ovaries (a sterilisation procedure) for the purposes of regulating cyclical epilepsy and/or behaviour control has been a surgical response for young women with intellectual disabilities. Marion’s case is an example. This approach to the management of behaviour and control of cyclical epilepsy have come under increasing scrutiny and criticism. They are considered to have a significantly negative impact upon female health and well-being in both the short and long term.(refer to Chapter 3). The procedure has been called female castration.

[138] Carlson et al., 1994 at p. 29.

[139] Australian Institute of Health and Welfare, 1997, Australian Hospital Statistics 1995-96, AIHW Catalogue no. HSE, Canberra.

[140] Ibid., Table 6.18, P.104.

[141] The assumption is that reproductive tract disease is not significantly more common in 18- 24 year olds than it is in 15-17 year olds. They will be more likely to be having children and therefore to be at risk of massive post partum bleeding requiring ‘obstetric hysterectomy,’ but this is rare – there are only several cases a year across all age groups at Melbourne’s Royal Women’s Hospital out of approximately 7,000 births.

[142] The assumption is less safe here for the obvious reason that 18-24 year olds are more likely to be sexually active, and to undergo tubal ligation for contraceptive purposes.

[143] West, S, The Hysterectomy Hoax, Doubleday, New York, 1994, at Pp 25-27.

[144] See Table 5.6, below.

[145] AIHW, ibid., Figure 9.2 at p139.

[146] AIHW, ibid., Figure 9.1, at p138.

[147] Grant, C and Lapsley, HM, The Australian Health Care System, School of Health Services Management, University of NSW, 1993, at p182.

[148] Australian Institute of Health and Welfare, (1997) Australian Hospital Statistics 1995-96, AIHW Catalogue No. HSE, Canberra, see Table 5.9 at p.56