The Sterilisation of Girls and Young Women in Australia: issues and progress
Chapter two - the debate about numbers
The 1997 Report found that the number of sterilisations far exceeded those authorised by courts and tribunals. It concluded that:
"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 may be much greater, perhaps by a factor of several times" .[1]
(a) the most recent 'official data' on sterilisation of young women
The Federal Minister for Health at the time of the 1997 Report disagreed with the numbers and said there were about two hundred sterilisations performed on female minors not the thousand reported. [2] More recently the Senate Report on "Sterilisation of Women and Young Girls with an Intellectual Disability" tabled in December 2000 by the Minister for Family and Community Services and the Minister assisting the Prime Minister for the Status of Women (hereafter called the Senate Report) puts the numbers even lower. It notes on the basis of the Australian Institute of Health and Welfare (AIHW) data that a total of only 22 sterilisations were performed between 1993-1999 on girls under 18 years "with a recorded diagnosis of intellectual disability" [3] who were "admitted patients in both private and public hospitals." [4] It also notes that Medicare data (HIC) [5] records a total of only 11 sterilisations of "all females aged under 18 . performed in Australian private hospitals and on private patients in public hospitals" [6] between financial years 1996/97 to 1998/99. It suggests, on the basis of the AIHW and the HIC data, that the number of sterilisations since 1994 has declined. [7]
Very considerable care should be taken in interpreting this data. Identifying rates of sterilisation procedures for girls and young women involves the collection of relevant statistical and other data and ideally such data will be consistent, comprehensible and comparable across agencies involved in collection. [8] This is unfortunately not the case at this time in Australia, and this is one of the reasons for the discrepancies.
The Senate Report acknowledged that a significant reason for these discrepancies was that "each [data base] has some limitations". [9] There appear to be differences or changes in coding across agencies and over time, and inconsistent coding and coding errors undermine the reliability of the data. For example, the Senate Report says there are ".processing errors such as incorrect recording of the service against the child rather than the mother, errors in itemisation by the doctors rooms or date of birth errors on the Medicare enrolment file." The other problem is that "the Health Insurance Commission was only able to verify the data against actual claims records for the period 1997-2000, as Medicare claims' histories are culled after two years" [10]
The efforts of the AIHW [11] and the Victorian Health Department (eg; VAED case mix data) highlight the commitment to improving the reliability of data. It may be possible to secure more reliable information as the process of finalising, refining and implementing the development of uniform codings for medical treatments comes to fruition.
In the meantime the data remains problematic. One indication of the problem is that the Family Court and State Guardianship Tribunals authorised more sterilisations than the Senate Report says have been performed. That is an anomaly indeed.
As indicated already, the Senate Report, on the basis of the AIHW data, identified 22 sterilisations of girls under 18 years "with a recorded diagnosis of intellectual disability" between 1993-1999, including 7 in 1994/95 and 2 in 1998/99. [12] Yet the Family Court and State Guardianship Tribunals authorised 9 sterilisations of girls under 18 years for calendar years 1994 & 1995, and 7 in 1998. The Senate Report also identified, using the HIC data, that 11 girls under 18 years were sterilised between 1996/97 and 1998/99 - 7 in 1996/97 and 4 in 1998/99. Yet the Family Court and State Guardianship Tribunals authorised 7 sterilisations of girls under 18 years in 1998 [13] alone. It suggests on the basis of the AIHW and HIC data that the number of sterilisations has declined. [14] Yet the Family Court and State Guardianship Tribunals authorised more sterilisations in 1998 than any previous year since Marion, and the numbers of authorisations year by year suggest that the rate remains relatively stable. [15]
There are other concerns with the way the Senate Report has used the AIHW data. Firstly, it counted only women with intellectual disabilities. Personal communication with medical professionals suggests many young women with mild intellectual disabilities will not be recorded as having an intellectual disability. The HIC data on the other hand, does not identify how many of the young women undergoing sterilisation procedures have intellectual disability, and does not include public patients undergoing procedures in public hospitals. [16] That is why the 1997 Report was not limited to girls with intellectual disabilities but referred to instead girls and young women who had a sterilisation procedure for whatever reason, including disease (eg; cancer). The writers proposed most of these procedures would be related to intellectual disability because medical practitioners would be reluctant to sterilise young women who did not have intellectual disabilities. [17]
Secondly, the Senate Report did not count hysterectomies undertaken for "therapeutic reasons" - "in the context of treatment of disease, such as endometriosis, pelvic inflammatory disease, tumours". [18] Notably the legislation in both the NSW and South Australia requires Guardianship Tribunal authorisation irrespective of the reasons for the procedure unless the situation is immediately life threatening to the child, for example carcinoma.
Thirdly, the Senate Report specifically excluded endometrial ablation as a sterilising procedure. [19] This is somewhat misleading. The surgical treatment of endometrial ablation in the early 1990's was being described as a less invasive option to hysterectomy with similar benefits for the menstrual suppression of women with intellectual disabilities. [20] Professor David Healey et al in the Medical Journal of Australia said:
"The short and long-term complications of hysterectomy are significant. We have described the successful use of endometrial ablation as an alternative means of menstrual suppression in seven intellectually disabled women [21] ..We propose that endometrial ablation be the treatment of choice if surgical suppression of menstruation is required for women with intellectual disability. Fertility is significantly impaired after endometrial ablation." [22]
At the same time Carlson et al predicted that:
"as hysterectomies decline in numbers, there may be an increase in endometrial ablation or resection procedures" [23]
The 1997 report noted, however, that there appeared to be an "on-going trend in the use of ablations but they too are dropping in numbers post 1995/96". [24] The HIC data recorded a drop from a high of 201 endometrial ablations in 1994/95 to 98 in 1996/97. Three years later less than half that number were being performed in the age group (0-17 years) suggesting that endometrial ablation for menstrual suppression has not had the successes hoped for by medicine. On this basis it is likely that the numbers of endometrial ablations undertaken may not have necessarily resulted in permanent sterility for this group of young women.
Research conducted in Victoria has examined the coding for endometrial ablation:
".it is now possible to propose that the coding for endometrial ablation has occasionally been applied to the ablation by diathermy or laser of the endometriosis in the pelvis, rather than the ablation of endometrium within the uterus. The first one is a procedure to treat endometriosis, the latter a procedure to eliminate or substantially reduce menstrual loss that must be considered a sterilising procedure as it is unsafe to have pregnancy following" [25]
The issue of coding in endometrial ablation is problematic in terms of reliable data on sterilisation procedures however further studies will add light to its use in young women.
(b) the anecdotal information
The major problem with the 'official data' however, as the Senate Report notes itself, is that it was reliant on figures derived :
".only from official sources [emphasis]. It is possible that there are unrecorded and unauthorised non-therapeutic sterilisations of young women with intellectual disabilities being undertaken in Australia."[26]
"it is not possible to ascertain the precise number of unauthorised sterilisation procedures that may be being performed on women with intellectual disabilities" [27]
The anecdotal information provided by young women, service providers and practitioners suggests that the possibility to which the Senate Report refers is in fact a reality. There is long-standing and persistent anecdotal information provided by parent and community groups, churches, disability service providers (both government and non-government), medical and non-medical professionals, and State statutory agencies that unlawful sterilisations continue to occur.
The NSW Guardianship Tribunal notes that:
"the tribunal is not aware of the figures, but we agree that there is a large discrepancy between the numbers of applications to the tribunal and the numbers of sterilisations that take place in NSW" [28]
The Public Advocate in Victoria:
"is concerned and questions whether the number of applications accurately reflects the number of sterilisations being conducted. Obviously no data exists where the doctor/hospital has proceeded on the (illegal) consent of the family or the (dubious) consent of the person with a disability" [29]
The South Australian Intellectual Disability Services Council said:
"IDSC has no information about sterilisations that have been performed without the proper consent but are aware that it is highly likely that a number have been performed in this state" [30]
An experienced health educator notes:
".it seems that women and pre-menarchal girls with high support needs are having hysterectomies .the practices continue"
"workers from both camps [government and non-government service providers] seem very well aware of the illegality of hysterectomy, as do GP's .however, the practices continue" [31]
There is no way to quantify the anecdotal information. In any event, advocacy groups representing women with disabilities have made it clear that the 'debate' about the sterilisation of girls and young women with disabilities should not be reduced to arguments or claims making about numbers.[32] They insist that the primary issue is that of the human rights of the girls and young women concerned, and more generally of service providers, family, and community attitudes to reproduction, menstruation and sexuality. [33]
It is a pity that the debate about the sterilisation of girls and young women has reduced to a debate about the numbers of procedures being performed. It's a human rights issue whether the numbers are one thousand, or two hundred as the Minister for Health said in response to the 1997 Report, or something less again as the Senate Report suggests. It has remained an on-going issue over time.
In March 1998 as key note speaker for the launch of the Family Court protocols for special medical procedures in Victoria the late Elizabeth Hastings highlighted the real issue when she commented on the Minister's assessment, following the 1997 Report, that he did not propose to initiate an investigation into the discrepancy, whatever it is, between lawful and unlawful sterilisations. She said:
"A world in which government cannot be bothered to investigate potential illegal medical assault on nearly 200 of its citizens, in which those with no authority feel free to make decisions which are blatantly against the law and to carry out serious and irreversible procedures on those with little or no capacity to give or withhold consent, is a world in which people with disabilities can have no certainty or confidence about their human being or their future." [34]
A year later in October 1999, the Chief Justice of the Family Court, the Honourable Justice Alastair Nicholson AO RFD, concerned about unlawful sterilisation of children raised the issue in his keynote address to the 7th Australasian Conference on Child Abuse and Neglect. He said:
"I still adhere to what I said in the 1989 case of In re Jane, a view that would seem to have been shared by the majority in Marion's case. In In re Jane I said:
"like all professionals, the medical profession has members who are not prepared to live up to its professional standards of ethics and experience teaches that the identity of such medical practitioners becomes known to those who require their assistance and their services are availed of. Further, it is also possible that members of that profession may form sincere but misguided views about the appropriate steps to be taken" [35]
In December 2000, the Attorney-General Honourable Daryl Williams AM QC MP sent an "Open Letter to the Australian Medical Profession" saying:
"It has come to my attention that some sterilisation procedures are being undertaken on children without the proper authorisation. Though I believe the number of these unauthorised procedures to be small, I also believe that the legal obligation to obtain court authorisation may not be widely known among medical professionals"
Progress in terms of medical and community education about the need for the lawful authorisation of sterilisation is occurring. [36]
1. Brady, S &Grover, S.(1997) The sterilisation of girls and young women in Australia - a legal, medical and social context, Human Rights and Equal Opportunity Commission, Disability Discrimination Commissioner Sydney. Other research projects examining the numbers of sterilisation procedures for girls and young women in Australia and used by Brady & Grover (1997) include the Family Law Council (1993) Sterilisation and Other Medical Procedures on Children: A Discussion Paper Canberra; Intellectual Disability Review Panel (1992) Report to the Minister for Community Services Victoria on Menstrual Suppressants, Melbourne; Carlson, G et al (1994) Menstrual Management and Fertility Management for Women who have Intellectual Disability and High Support Needs : An Analysis of Australian Policy, Department of Social Work and Social Policy, University of Queensland. Each of these research projects has suggested there is non-compliance with the law regarding court authorisation. The Federal Parliament's Multi-Party Joint Standing Committee on Treaties reported on the United Nations Convention on the Rights of the Child (UNCROC) and raised the issue of unlawful sterilisation of children as a matter of great concern. See Joint Standing Committee on Treaties.(1998). United Nations Convention on the Rights of the Child : Executive Summary: United Nations Convention on the Rights of the Child (17th report) (1998) Parliament of the Commonwealth of Australia Canberra. p 46.
2. See for discussion Sandor, D. (1999). Sterilisation and Special Medical Procedures on Children and Young People: Blunt Instrument? Bad Medicine? In I. Freckleton, and K, Peterson. (Eds.). Controversies in Health Law, Sydney: The Federation Press
3.The Report to the Senate on "Sterilisation of Women and Young Girls with an Intellectual Disability" tabled by the Minister for Family and Community Services and the Minister assisting the Prime Minister for the Status of Women on 6th December, 2000 p4 . Hereafter referred to as the Senate Report.
5. These data have two major limitations, there is no way of knowing how many of the young females undergoing sterilisation procedures may have an intellectual disability, and the data do not include public patients undergoing procedures in public hospitals. See Senate Report at page 3
6. See Senate Report, Attachment 1 at p 8
8. See for example, national data collection agencies include the Health Insurance Commission (HIC), the Australian Bureau of Statistics (ABS) and the Australian Institute of Health and Welfare (AIHW). There is also State based data collection. For example in Victoria the Department of Human Services has introduced Diagnosis Related Groups and the Victorian Admitted Episodes Dataset (VAED).
9. See discussion in the Senate Report at pp 2-4
11. See National Health Morbidity Database collated by AIHW
12. The Family Court and the tribunals cannot guarantee that all authorisations or applications for sterilisation of children have been located. Data bases have been inadequate to the task. The methodology employed to collect data however has been rigorous including searches for reported and unreported cases, contacts with all statutory bodies who may have been involved in cases and written requests forwarded by the Chief Justice of the Family Court to all judges asking for details of cases. The writers are not aware of any sterilisation procedures authorised by the Family Court or Guardianship Tribunals between Jan 1999-June 1999.
13. See Chapter 3 and Table 3.2
17. There is anecdotal evidence however to suggest girls and young women with physical disabilities are also at risk of sterilisation. The WWDA is funded by the federal government to provide a report on this issue relating to sterilisation of women with disabilities. It is due to be released in 2001.
18. See Senate Report Attachment 1 at p 9
19. The Senate Report did this on the basis that these procedures were "specifically for the treatment of certain pathological conditions". See at p 9
20. At the same time Guardianship Tribunals viewed endometrial ablation as a special medical treatment requiring the authorisation of the tribunal. The procedure of endometrial ablation is considered by the Family Court as a sterilisation procedure. Refer footnote 22.
21. See Wingfield, M.,McClure, N., Mamers, PM et al (1994) "Endometrial ablation: an option for the management of menstrual problems in the intellectually disabled" Med J Aust 160: pp 533-536
22. See Wingfield, M., Healey, D., Nicholson, A (1994) "Gynaecological care for women with intellectual disability": Med J Aust 160, p 537
23. Carlson, G., Taylor, M., Wilson, J., & Griffen, J. (1994)Menstrual Management and Fertility Management for women who have intellectual disability and high support needs: an analysis of Australian policy (2nd ed). Department of Social Work & Social Policy, University of Queensland . The original work was funded by the Commonwealth Department of Health and Housing.
24. See Brady, S & Grover, S. (1997) Sterilisation of girls and young women in Australia: a medical, legal & social context, HREOC commissioned by the Disability Discrimination Commissioner. P 43
25. Research conducted by S Grover, forthcoming 2001.
28. Written communication from the NSW Guardianship Tribunal dated 9th February 2001.
29. Written communication from the Office of the Public Advocate in Victoria dated 2nd March 2001.
30. Written communication from South Australia IDSC dated 20th February 2001
31. Written communication from health educator dated 4th January 2001
32. The writers express sincere regret to all those who have been hurt by the focus on 'data' and acknowledge the legitimacy of persistent anecdotal and personal histories regarding sterilisation. We thank all respondents who have been candid.
33. This is a consistent theme in respondents comments.
34.Elizabeth Hastings (1998) The right to right treatment the key note speech for the launch of "A Question of Right Treatment" University of Melbourne March 28th, 1998 at page 4.
35.Nicholson, A. (1999). Court management of cases involving child abuse allegations Keynote address at the 7th Australasian Conference on Child Abuse and Neglect. See also case In re Jane (1989) FLC 92-007 at 77,257.