Sterilisation: Chapter five

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    • The Sterilisation of Girls and Young Women in Australia: issues and progress

  • Chapter five - developments since 1997

    (a) responses to the 1997 Report

    The Report triggered a number of responses, not least a debate about the 'true' numbers of girls and young women being sterilised.

    The most significant responses included the following:

    (i) The Federal Attorney-General's Department convened a meeting in June 1998 of interested agencies including representatives from the Attorney-General's Human Rights and Law Reform branch, the Family Court of Australia, Human Rights and Equal Opportunity Commission (HREOC), and the Office of Disability to canvas opinion on what options for reform might be available.

    (ii) At the same time HREOC worked directly with the Commonwealth Department of Health & Aged Care for changes to the Medicare Benefit Schedule. On 1 November 1998 the "Notes for Guidance" in the Medicare Benefit Schedule were amended to include the following guidelines:

    • "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.
    • 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".

    HREOC considered a more comprehensive approach was needed. In August 1998 Commissioner Sidoti wrote to the Federal Minister for Health welcoming the proposed changes to the Medicare Benefit Schedule, but drawing attention to the need for more rigorous requirements to be imposed. A higher level of accountability similar to that required of doctors making claims in relation to rhinoplasty procedures (ie 'nose jobs') was considered appropriate. Rhinoplasty procedures require full clinical notes justifying why the procedure is therapeutically necessary before the Medicare payment is made. No action subsequently resulted from this HREOC recommendation.

    In response Commissioner Sidoti said:

    "I intend to advocate for further changes to this item including a requirement that claims for Medicare funds by doctors in relation to sterilisation of minors should be accompanied by either an order of the appropriate court or tribunal or full clinical details of the need for such a procedure" [1]

    iii) The HREOC proceeded to make its strategy clear. It announced that its objective in relation to the sterilisation of girls and young women is "to promote legal, policy and program measures to ensure that sterilising surgery is not performed on people with disabilities where it is not consistent with human rights" and to:

    • assist in identifying what action can be taken by appropriate bodies to ensure that illegal sterilisations are not performed on people with disabilities
    • encourage appropriate bodies to identify the most effective and accessible mechanism for gaining approval - to undertake sterilisations legally
    • encourage appropriate bodies to address issues relating to the availability of family support and advice on alternatives to sterilisation". [2]

    (iv) Women With Disabilities Australia (WWDA), a federally funded advocacy organisation, [3] undertook a literature review in 1999 on the sterilisation of girls and women with disabilities and highlighted concerns about potential unlawful sterilisations and human rights breaches. [4] It lobbied the Senate with the result that a motion was passed on 15th March 2000 requesting that the Federal government:

    • 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;
    • commission research on the practice, effect and implications of the sterilisation of women with intellectual and other disabilities. [5]

    (v) In response to the motion on the 15th March 2000, the Minister for Family and Community Services and the Minister Assisting the Prime Minister for the Status of Women tabled the Senate Report. [6] The 14 page 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 relevant legal, ethical and human rights mechanisms and the commissioning of research." [7]

    The Senate Report notes that WWDA was provided a $25,000.00 grant from the Commonwealth Office of the Status of Women to ".undertake a National Project on sterilisation and reproductive 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." [8]

    The Senate response referred specifically to girls and women with intellectual disabilities whilst the WWDA response was broad based including all women with disabilities. Women and girls with intellectual disabilities are less likely to be able to make an informed decision about sterilisation compared with girls and women with physical disabilities. For women who are able to give a valid consent sterilisation at a young age raises questions about the lack of voluntariness or coercion in decision-making. The opportunity for legal redress for involuntary sterilisation is different in these two cases.

    (vi) WWDA wrote to the Federal Attorney-General in April 2000 regarding its concerns about the unauthorised sterilisation of girls and young women who have disabilities. In a reply dated 28th July 2000 the Commonwealth Attorney-General's Department advised of progress in the area, including:

    ".providing information to the medical profession and members of the public as a means of ensuring such procedures are not carried out without the appropriate authorisation".

    It noted amendments to Legal Aid Guidelines came into effect on 1 July 2000 which:

    ". 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." [9]

    The means test for legal aid is not applied to child representation but is applied to the parents of a child. Therefore parents (or anyone else) making an application for a special medical procedure for a child or young person will not receive legal aid unless they meet the means test. This raises the problem about accessibility to the courts and the burden of the financial costs associated with purchasing legal representation to present an application.

    (vii) The Attorney-General, Mr Daryl Williams issued a news release on 17 December 2000 saying he had 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" and that he had also sent an "Open Letter to the Australian Medical Profession" and to ".selected Australian medical journals for publication." [10]

    In his "Open Letter to the Australian Medical Profession" the Attorney-General said:

    "I wish to bring to your attention an issue that I consider to be of concern to readers of this journal. That issue is the need for authorisation from an appropriate court or tribunal prior to undertaking a sterilisation procedure on a minor unless as a by product of surgery carried out to treat some malfunction or disease.

    I am bringing this to your attention as a lack of awareness among some professionals may be leaving children without the protection of the law. Professionals who perform unauthorised procedures are at risk of liability.

    It has come to my attention that some sterilisation procedures are being undertaken on children without the proper authorisation."

    In his letter to Australian Medical Colleges the Attorney-General also advised on jurisdictional issues. He said:

    ".the Family Court of Australia and the Federal Magistrates Service are appropriate bodies to decide such matters" and that "in New South Wales and South Australia there are some circumstances in which the Guardianship Board may be able to approve a sterilisation procedure for a 16 or 17 year old child who is unable to give consent. The Family Court and the Federal Magistrates Service, however, have the power to authorise sterilisations for all children under the age of 18 years in all Australian States and Territories, including New South Wales and South Australia".

    The NSW and South Australian Guardianship jurisdictions both have jurisdiction to authorise sterilisation procedures for children of all ages (0-17 years) as well as for adults with decision making disabilities. The NSW Guardianship Tribunal had its special medical procedure jurisdiction extended to include all children not just 16 and 17 year olds as was the case previously. [11] This 'extended' jurisdiction is part of the package of recommendations from the Department of Community Services review in 1996 of the Children (Care & Protection) Act 1987 (NSW) headed by Professor Patrick Parkinson of the Law School of the University of Sydney. [12]

    (b) ongoing medical and community education

    (i) A number of agencies undertake educational activities, including the Developmental Disability Units (DDUs) attached to medical schools at Monash Medical Centre, and the University of Queensland. The DDUs are actively involved in training medical students, general practitioners and postgraduate psychiatrists, psychologists, direct care workers, people with disability and their families and others. The training includes discussion of menstrual management, sterilisation, sexual abuse, capacity to consent to medical treatment and guardianship legislation.

    The DDUs also carry out research, develop resources for medical practitioners [13] and other disability service providers, and provide clinical services to adults with intellectual disability. Associate Professor Nick Lennox says that:

    "Menstrual management is often an issue addressed during these consultations. Operative procedures such as endometrial ablation and hysterectomy are occasionally raised in consultation, however a past history of a hysterectomy is more commonly seen clinically." [14]

    He adds that hysterectomy is not unusual in the adult population although he noted that:

    ".occasionally this issue [the sterilisation of children] is mentioned" and "gradually there is more people who question the 'need' for sterilisation."

    He draws attention to:

    ".the need for professionals to question such requests" and for "a global attitudinal change to people with an intellectual disability" [15]

    The College Obstetricians & Gynaecologists (RANZCOG) have also been active since Marion (1992) informing their members about the need for legal authorisation before a sterilisation may be performed on children and women with intellectual disabilities. It has published several Resource Units about best practice regarding menstrual and contraceptive management for women with intellectual disabilities.

    (ii) The South Australian Office of the Public Advocate (OPA) has a very active role in educating and informing the public on the legislative requirements [16] and has built service linkages and referral options. [17] It has its own resource collection and works with the Sexual Health Information Network (SHINE, formerly the Family Planning Association), and closely with the specialist government service for people with intellectual disabilities, the Intellectual Disability Services Council (IDSC) of South Australia. [18] IDSC has been active for many years in the area of the sterilisation of children and women with an intellectual disability and has commissioned a number of internal reports. [19] It plays a key role in both developing and providing skills development and education relating to menstrual management and sexuality to individuals, their families and support workers. The Developmental Services Team is a specialised team within IDSC which collates information and resources on issues such as menstrual management and can assist front line workers to develop individual and group programmes. IDSC also works very closely with SHINE in the delivery of direct services.

    "IDSC is committed to upholding the rights of people with intellectual disability and considers that sterilisation for purposes other than for treating a life threatening disease should only occur as a last resort. The Guidelines provide workers with an overview of the issues, clarify the roles and responsibilities of other agencies and the roles and responsibilities of workers". [20]

    In South Australia there is an active community education network in relation to sterilisation matters. The attitude to who should have jurisdiction in sterilisation matters is interesting in the context of South Australia where legislation has existed for nearly two decades. It appears that families and service providers:

    "would much prefer matters to be dealt with by OPA and GB [Guardianship Board] but I am not sure whether [these] sentiments would be echoed by all of the legal fraternity. The reason for this is that OPA and GB "have a broader perspective and also the knowledge and resources to respond more appropriately [to] these matters" [21]

    The Office of the Public Advocate in Victoria, has conducted:

    "an intensive and targeted community education program including some media, development of a Fact Sheet, speaking engagements and (with the Department of Justice) distribution of 20, 000 copies of a booklet to doctors, hospitals, lawyers etc ." [22]

    It too has an active community education program which explains the guardianship legislation in relation to special medical procedures, including sterilisation, and the approaches taken to these applications. Its approach to children is similar, and part of the same programme.

    (iii) Since the 1997 Report's publication there has been a continuing progress regarding the range of practical resources and literature available (both international and local) in relation to fertility and menstrual management for women with disabilities. An excellent clinical and educational resource assisting girls and young women with intellectual disabilities, their families and carers is the FPA Health formerly Family Planning (NSW). Part of its service includes the Healthrites Bookshop (NSW) [23] which provides an extensive range of resource materials and publications available through a mail order service. There are similar services available in other States. Overall there appears to have been marked progress in the area of disability service provider's education and skills development relating to menstrual management programmes and parent education. Still a lot needs to be done. An important area that does not appear to have kept pace is special education.

    Empirical research and recent respondent's comments highlights an unmet need for skills development and practical supports for special school-teachers and aides. [24]

    1. From HREOC Home Page dated November, 1998, see "Disability Rights Update"

    2. ibid

    3. See WWDA website for information on the organisation's aims and objectives

    4. see above website for a literature review by Cathy Spicer

    5. See Australian Democrats Media Release "Democrats win action on sterilisations" from Senator Lyn Allison dated 22nd December 2000.

    6. Report to the Senate on "Sterilisation of Women and Young Girls with an Intellectual Disability" was 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.

    7. ibid p 1

    8. ibid pp 6-7 The National Forum was conducted as an adjunct to the Conference "Disability with Attitude" held in Sydney in 15-16 Feb 2001. The forum was split into two components. The specific aim of the first component was to provide a secure and confidential environment so that women with disabilities can tell their own stories and as such it was open to women with disabilities only. The second component included a special interest meeting for service providers, academics, policy workers etc who have an interest in the issue but were not eligible to attend the closed forum. Sex Discrimination Commissioner Susan Halliday chaired and addressed the special interest meeting.

    9. ibid p 5

    10. ibid p 4

    11. See section 175 of the Children and Young Persons (Care and Protection) Act 1998 (NSW). There are three treatments that require the consent of the Tribunal under this provision. They are: sterilisation, the use of depo provera or similar, vasectomy or tubal occlusion. The provision includes children who may or may not have a disability. A letter to the Editor was issued by the NSW Tribunal and published 23-25 December 2000 edition of the Sydney Morning Herald.

    12. See NSW Department of Community Services, October 1996 "Review of the Children (Care & Protection) Act 1987: Summary of Key Issues (several volumes)

    13. See resource book for information on issues relating to sterilisation and medical best practice raised by the report in Therapeutic Guidelines (March, 1999). "Management Guidelines for People with Developmental and Intellectual Disabilities" Melbourne.

    14. Written communication from Associate Professor N Lennox, DDU, University of Queensland, dated 26th January 2001.

    15. ibid. These views were reflective of the majority views from respondents.

    16. OPA (SA) gives about 80 presentations a year to the general public on sterilisation issues, and regular education sessions to disability workers. It also runs public and professional forums the most recent in November 2000 which drew over 100 participants from the community sector and service providers.

    17. For example, a highly successful referral system has been developed with the Women and Children's Hospital, in particular the Obstetrics and Gynaecology Department regarding options for fertility and menstrual management

    18. IDSC is the state government organisation within the Department of Human Services IDSC has responsibility for assisting people with intellectual disability and their families; the overall coordination, planning and development of services for people with intellectual disability within South Australia; purchasing services from non-government organisations and private providers on behalf of people with intellectual disability; advising the State Government on issues concerning people with intellectual disability; assisting people with intellectual disability access quality services, and promoting community awareness and acceptance of intellectual disability.

    19. See "Sterilisation of People with Intellectual Disability" 1996 and 'Sterilisation of People with Intellectual Disability: A Discussion Paper" 1997 and "Practice Guidelines on Sterilisation Issues for Women with Intellectual Disability" 2000. IDSC (SA).

    20. Written communication from IDSC dated 20th February 2001. The following is a summary of the roles and responsibilities of IDSC workers: To provide information, advice and referral options about all alternatives for fertility and/or menstrual management for the child/adult; To develop a range of strategies to assist the child/adult (where appropriate) to: develop partial or independent skills in menstrual management; accept menstruation; develop protective behaviours and personal relationship skills. To ensure access to behaviour management for the child/adult. To work in collaboration with other key agencies, such as SHINE SA and the Department of Education, Training and Employment, to ensure that information and appropriate programs are made available to both the child/adult and their family. To provide information and assistance to obtain relevant reports and, where appropriate, psychological assessments. To facilitate discussion of the issue with the individual/family and other professionals as requested/required. To liaise, where appropriate, with the Office of the Public Advocate, Legal Services Commission, Children's Interest Bureaux and other advocacy services. To provide information and access to a broad range of services to assist in the day to day care of the child/adult eg respite, day options, based on the identified needs of the individual and their family. To provide referral to IDSC specialist support services such as the Intensive Family Intervention Team and the Adolescent/Adult Intervention Team. To have available up to date information/research on the issue of sterilisation and intellectual disability.

    21. Written communication from OPA (SA) dated 31 January 2001.

    22. Written communication from the OPA (Vic) dated 2nd March 2001.

    23. Contact by email

    24. 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", Project funded through a Research and Development Grant from the Commonwealth Department of Health, Housing and Community Services and see and SM Brady.(2001). The sterilisation of girls and young women with intellectual disabilities in Australia: an audit of family court and guardianship tribunal cases between 1992-1998 in Conference Proceedings Disability with attitude : critical issues 20 years after International Year of the Disabled, International conference 16-17 February 2001, University of Western Sydney. Pp 108-122.