Sterilisation of Women and Young Girls with an Intellectual Disability – Report to the Senate


This Report was prepared and written by the Commonwealth Department of Family and Community Services in response to a Senate Resolution passed in March 2000. As a public document, it has been reproduced here for the members and constituents of Women With Disabilities Australia (WWDA). The Report was tabled by the Minister for Family and Community Services and the Minister Assisting the Prime Minister on the Status of Women, December 6, 2000.


About this Report

This Report covers the background to the issue of sterilisation of women with disabilities, provides recent statistics on sterilisation procedures, and details a cross-Departmental response to the Senate’s calls for a review of legal, ethical and human rights mechanisms and the commissioning of research. It has been compiled as a result of a collaboration between staff of the Departments of Family and Community Services and Health and Aged Care, the Attorney-Generals Department and the Office of the Status of Women in the Department of the Prime Minister and Cabinet.


Background

On 15 March 2000, the Senate agreed to the following resolution:
That the Senate –
(a) notes:
(i) that in 1992 the High Court, in what has come to be known as Marion’s case, decided that the non-therapeutic sterilisation of an intellectually-disabled minor could not be authorised without a court order,
(ii) the findings of Cathy Spicer, who reports that recent statistics show an increase in the rate of sterilisation procedures performed on women and young girls with an intellectual disability, and
(iii) that there is no comprehensive research regarding the sterilisation of women with an intellectual disability; and
(b) calls on the Government to:
(i) conduct a review of the legal, ethical and human rights mechanisms in place, or needed, to protect the rights and interests of the reproductive health of women with intellectual and other disabilities, and;
(ii) commission research on the practice, effects and implications of the sterilisation of women with intellectual and other disabilities.

On 26 April 2000, the Minister for Family and Community Services provided an interim response to the Senate, saying that the Department of Family and Community Services would take the lead in co-ordinating a cross-departmental response, and that she would report back to the Senate by the end of November 2000.


Statistics on Sterilisations of Young Women with an Intellectual Disability

A comprehensive review of available national data was undertaken in an attempt to ascertain the incidence of sterilisation of women and young girls with intellectual disabilities. The following data sources were examined; however, each has some limitations as detailed below.

1. The most relevant source is the National Hospital Morbidity Database, collated by the Australian Institute of Health and Welfare (AIHW). This covers sterilisation procedures undertaken on admitted patients in both private and public hospitals, and has the advantage of allowing for extraction of specific data relating to young women with a recorded diagnosis of intellectual disability. Essentially, all public hospital admissions are included, as are almost all private hospital admissions. According to this database, between 1993-94 and 1998-99, there was a total of 22 admissions for females under 18 years with a diagnosis of intellectual disability, during which a procedure that can be used for sterilisation was performed, in Australian public and private hospitals combined. (Because the numbers reported by each State/Territory in each year are so small, analysis at that level is not useful. Release at the jurisdictional level could also potentially infringe privacy). There does not seem to be a pattern of an increase in sterilisations on women and young girls with an intellectual disability, since the numbers have declined from a high of 7 in 1994-95 to 2 in 1998-99.

The disadvantages of these data are that:

  • they have been collated only since 1993-94, so national data relating to the period prior to the establishment of the law following Marion’s case, mentioned in the Senate resolution under (a)(i), are not available;
  • from 1993-94 to 1995-96, age group and not age was reported in Queensland and South Australia. Data reported for these years in these states is for females aged under 15 years;
  • · there is no routinely available independent means of checking the database for accuracy and comprehensiveness of records. The data in the records are derived from the information in the hospital’s medical records for the patient and is extracted by coders located in individual hospitals; and – whether an additional diagnosis of intellectual disability is recorded is dependent on whether it was considered by the clinician and coder to have affected the admission for the purpose of the principal diagnosis.

2. The second relevant source is the statistics provided by the Family Court of Australia on the numbers of sterilisations that had been authorised by the Family Court for the calendar years 1994-1999. The Court has acknowledged the help of Susan Brady of the University of Queensland in compiling these statistics. These statistics showed that there had been a total of 14 applications to the Family Court for sterilisations during that 6 year period, with 1 application withdrawn at directions hearing, and one appeal on a first instance judgment which overturned the decision not to sterilise. There were thus 13 applications for sterilisation approved. These data also show a decline in the number of applications for sterilisations, from a high of 5 in 1994 to 0 in 1999.

3. The third source of data investigated for this review was the Health Insurance Commission’s Medicare claims data. These data have two major limitations for this purpose: 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. However, a detailed review of these data was undertaken by the Department of Health and Aged Care and the Department’s comments are provided in Attachment 1.

Conclusions

It is not possible to ascertain the precise number of unauthorised sterilisation procedures that may be being performed on women with intellectual disabilities. The data presented above are indicative only.

There are four possible explanations for the discrepancy between the totals produced by the first two data sources:

a) The difference in reporting periods (financial years and calendar years) may account for some of the mismatch;

b) At least 2 sterilisations performed on young women with intellectual disability between 1993-94 and 1998-99 were undertaken for clearly therapeutic reasons, for which court authorisation was not necessary;

c) Up to 7 sterilisations performed on young women with intellectual disability between 1993-94 and 1998-99 may have been authorised by tribunals other than the Family Court of Australia; and

d) Up to 7 sterilisations performed on young women with intellectual disability between 1993-94 and 1998-99 may have been unauthorised.

These figures are only from official sources. It is possible that there are unrecorded and unauthorised non-therapeutic sterilisations of young women with intellectual disability being undertaken in Australia.


Review of Legal, Ethical and Human Rights Mechanisms

This section of the report outlines the efforts that have been made in Australia to prevent unauthorised sterilisations of young women with intellectual disability since the 1997 publication by the Human Rights and Equal Opportunity Commission of Sterilisation of Girls and Young Women, A Legal, Medical and Social Context, by Susan Brady and Dr Sonia Grover. The following actions have been taken to date.

The Attorney General is working to ensure that medical practitioners understand their legal obligations in relation to non-therapeutic sterilisation procedures carried out on minors with an intellectual disability.

Letter from Attorney-General to Colleges of Medicine

The possible incidents of unauthorised sterilisations indicate that some doctors may not be aware of their legal obligations in this area. The Attorney-General has written to Australian medical colleges and associations to inform them of the law and procedure surrounding the non-therapeutic sterilisation of minors with an intellectual disability. An open version of this letter will be provided to selected Australian medical journals for publication.

Amendment to Legal Aid guidelines

The Commonwealth Attorney-General has also approved revised Commonwealth Priorities and Guidelines for Legal Assistance in Respect of Matters Arising Under Commonwealth Law, with these coming into effect on 1 July 2000. The Guidelines reflect the Government’s policy of encouraging parents to act lawfully by seeking a court order for special medical procedures such as sterilisation, by making legal aid more accessible and clarifying who is eligible. The Guidelines also provide that legal assistance should be granted for the separate representation of a child in any Family Court case relating to special medical procedures such as sterilisation. The means test is not applied in such cases, and a Legal Aid Commission must not try to recover any of the costs of the child’s representative from the child’s parents, whether they are legally assisted or not. In addition, legal aid must be provided to the parents of a child in any Family Court case relating to special medical procedures (including sterilisation), where the parents meet the means test. These guidelines apply to Family Law Act matters heard in any court, including the Federal Magistrates Service.

Changes to the Medicare Benefits Schedule

On 1 November 1998 an amendment was made to the Notes for Guidance in the Medicare Benefits Schedule to include guidelines provided by the Human Rights and Equal Opportunity Commission on this matter. The Medicare Benefits Schedule Book now includes the following:

“(1)It is unlawful throughout Australia to conduct a sterilisation procedure on a minor (under 18 years of age) which is not a by-product of surgery appropriately carried out to treat malfunction or disease (eg malignancies of the reproductive tract). Parents and guardians have no legal authority to consent on behalf of minors to such sterilisation procedures.

(2)Practitioners may be subject to criminal and civil liability action if the sterilisation procedure is not authorised by the Family Court of Australia or a Court or Tribunal with jurisdiction to give such authorisation.”

Safeguarding the integrity of the Medicare claims data

The Health Insurance Commission has introduced a number of safeguards for ensuring the integrity of the Medicare data associated with such claims. The Medicare payments system now precludes the payment of claims for these services where the patient is 17 years and under, until the claim is verified with the practitioner. This restriction cannot be by-passed by Medicare claims assessors. Once verification is obtained, the facility to process such claims is only provided by a senior Health Insurance Commission officer. This should prevent processing errors in such data in the future. Verification does not extend to whether the service was authorised by the relevant court or tribunal. Unless a medical board or court decision deems otherwise, the payment of Medicare benefits assumes that a medical service was clinically relevant and performed in accordance with professional standards and relevant Commonwealth and State law.

Information to and from Family Planning Organisations

Details of the Senate’s resolution were provided by the Department of Health and Aged Care to all Australian Family Planning Organisations. The opportunity was taken to seek information on the type of resources and opportunities currently provided for professionals and parents or guardians in connection with the sexuality of young people with disabilities. Family Planning Organisations in most States and Territories offer sex education tailored for the special needs of this group. For example, one-on-one consultations; workshops for people with an intellectual disability, their parents or guardians, doctors, nurses, other health professionals, teachers, disability workers; and Information/Fact Sheets. The issues covered are menstrual management advice; alternative contraception options; the necessity for safe sex practices (regardless of sterilisation); legal process, for example, in regard to obtaining consent to and seeking authorisation for sterilisation; and referrals. Health professionals, parents and guardians contemplating sterilisation of young people with disabilities are welcome to use the services provided by the Family Planning Organisations.

College of Obstetricians and Gynaecologists’ Statements and Resources

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists published a statement (3.9) in June 1998, which directs its members to note that the performance of sterilisation of intellectually disabled females must be in accord with the current law of the relevant jurisdiction. This statement was re-endorsed in October 2000. Several Resource Units have been published by the College for continuing medical education of their members.( These Resource Units include the disclaimer: “The content of the Resource Unit indicates the author’s opinion, and not necessarily that of the RANZCOG.”). These have included one on “Menstrual and contraceptive management for women with intellectual disabilities” by Dr Sonia Grover, first released on 30 April 1997, and another titled “Consent for Operation on Mentally Retarded Minors which may interfere with their future fertility” by Professor Alex Crandon, first released on 31 August 1998. It is the responsibility of State and Territory governments to ensure that members of the medical profession comply with current laws of the relevant jurisdiction.

Research on the Practice, Effects and Implications of the Sterilisation of Women with Intellectual and other Disabilities

The Senate’s resolution noted that very little research on the non-therapeutic sterilisation of women and girls with an intellectual disability has been done. A first step in redressing this has been the grant of $25,000 to Women with Disabilities Australia by the Commonwealth Office of the Status of Women to undertake a National Project on Sterilisation and Health of Women and Girls with Disabilities. The Project has two main components:

  • background research which will examine international and national developments in the area; and
  • a National Forum which will draw together women with disabilities, academics and researchers, and policy makers to critically analyse the issue and develop strategies to advance debate and action.

Attachment 1

Comments on Medicare Data

The Senate’s resolution noted a report that recent statistics showed an increase in the rate of sterilisation procedures performed on women and young girls with an intellectual disability. The Senate reference is to a literature review produced by Cathy Spicer while on a placement from the University of Canberra with Women with Disabilities Australia. The most recent reference that her review quotes in relation to these statistics was to the report prepared by Susan Brady and Dr Sonia Grover and published in 1997 by the Human Rights and Equal Opportunity Commission. Brady and Grover’s Sterilisation of Girls and Young Women, A Legal, Medical and Social Context suggested, based on Medicare data, that significant numbers of minors were undergoing sterilisation procedures.

Medicare benefits are only payable for clinically relevant services, that is, services generally accepted by the medical profession as being necessary for the appropriate treatment of the patient concerned. The Department of Health and Aged Care has reviewed the data, and the Spicer and Brady and Grover assessments do not accord with the Department’s findings. These show the following Medicare claims for sterilisations of all females aged under18 that were performed in Australian private hospitals and on private patients in public hospitals:
1996-97: 7
1997-98: 0
1998-99: 4

The number and proportion of these claims that may relate to females with intellectual or other disabilities is unknown, and claims for periods prior to 1996-97 could not be verified because Medicare claims histories are culled after 2 years. There appear to be several reasons for the differences in these assessments. The first is that care needs to be exercised in the selection of the associated Medicare item numbers. The second is that care should also be taken when looking at Medicare data in very small numbers as issues such as data entry errors can significantly distort reports.

Selection of Medicare Data

The Department’s analysis was based on services included in the Medicare Benefits Schedule (MBS) that would result in sterilisation, with the exception of those services that are specified as being for the treatment of particular medical conditions. Also excluded were those services that constitute “global” items which incorporate a number of different procedures, some of which would not result in sterilisation. The services included in the analysis are listed at Attachment 2.

Excluded Services

The following services, details of which are outlined at Attachment 3, were not included in the Department’s review:

Certain Hysterectomy Services

The Department did not include hysterectomy services that specify the procedure in the context of treatment of disease, such as endometriosis, pelvic inflammatory disease, tumors and carcinoma, on the basis that such services would have been provided for therapeutic reasons.

Endometrial Ablation

Endometrial ablation services were excluded because they are listed in the Medicare Benefits Schedule specifically for the treatment of certain pathological conditions, ie: Item 35622 covers endometrial ablation for the treatment of chronic refractorymenorrhagia; Item 35638 also covers endometrial ablation but specifically for the treatment of moderate to severe endometriosis; Item 35638 is also a “global” item which provides for a range of services some of which, such as division of adhesions, would not result in sterilisation. Information is not available from the Medicare data base as to which of the multiple services covered under a “global” item was provided to the patient.

Ovarian Procedures

A number of ovarian procedures were excluded also. These are “global” items which include services, such as removal of ovarian cyst, which would not result in sterilisation. Again, Medicare data does not provide information about which procedure, under a “global” item, has been provided to the patient. The 1995-1997 data in Brady and Grover appear to have been derived from Medicare statistics. Brady and Grover do not seem to have made the same distinctions as the Department when selecting Medicare items and some of the above services appear to have been included in the data used in their report. It is not clear how the data they reported for the period 1987-1994 were derived.

Distortions in the Medicare Data

The second reason that would explain the discrepancy between this Department’s findings and those published in Brady and Grover is that, when looking at MBS data in very small numbers, issues such as processing errors can significantly distort reports. The Health Insurance Commission has checked actual claims records for the data listed above and has verified that these figures are correct. These data exclude those records that the Health Insurance Commission found were the subject of processing errors such as the incorrect recording of the service against the child rather than the mother, errors in itemisation by the doctor’s rooms or date of birth errors on the Medicare enrolment file. The Health Insurance Commission has now corrected the patients’ Medicare records in these cases.

Data periods

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 2 years. The Health Insurance Commission has no means of verifying the remaining data. It was considered inappropriate for the Commission to seek that doctors verify their records because firstly, these claims were up to 13 years old and secondly, this would raise privacy issues about obtaining the patient’s consent. Further, the Health Insurance Commission felt that it would not be appropriate for HIC staff to question patients about their medical history (particularly medical history of this nature).