Intellectual Disability Rights Service (IDRS): Submission on the Draft Model Bill to regulate the sterilisation of children with an intellectual disability


In late 2006, the Standing Committee of Attorney’s General (SCAG) released for consultation, draft national, uniform legislation ‘Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006’, which sets out the procedures that jurisdictions could adopt in authorising the sterilisation of children who have an intellectual disability. The Standing Committee of Attorneys-General (SCAG), is the national ministerial council made up of the Australian Attorney-General and the State and Territory Attorneys-General. SCAG provides a forum for Attorneys-General to discuss and progress matters of mutual interest. It seeks to achieve uniform or harmonised action within the portfolio responsibilities of its members. A number of organisations provided submissions in response to the Draft Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006, and some provided Women With Disabilities Australia (WWDA) with a copy of their Submission for our records. This Submission is from the Intellectual Disability Rights Service (IDRS). Copyright 2006.


 

Mr Laurie Glanfield
Director-General
Attorney General’s Department
Level 20, Goodsell Building
8-12 Chifley Square
Sydney NSW 2000

9 November 2006

Dear Mr Glanfield,

Draft Model Bill to regulate the sterilisation of children with an intellectual disability

I am writing in response to your letter dated 29 the September 2006 requesting our comments on the draft Model Bill to regulate the sterilisation of children with an intellectual disability (‘the Model Bill’). Thank you for your invitation. Intellectual Disability Rights Service (‘IDRS’) has a long history of active involvement with the issue of sterilisation of people with an intellectual disability so it values the opportunity to provide input into the development of such significant, nationwide legislation.

About IDRS

IDRS is a community legal centre that provides legal services to people with an intellectual disability throughout New South Wales. Our services include the provision of telephone legal advice and legal representation in select matters. We also engage in policy and law reform work and community legal education with a view to advancing the rights of people with an intellectual disability. IDRS also operates the Criminal Justice Support Network (‘CJSN’), to support people with intellectual disability when they come into contact with the criminal justice system.

Intellectual Disability

An intellectual disability affects the way that a person learns. Generally, for someone to be diagnosed with an intellectual disability they must have significantly below average intellectual functioning as well as limitations in two or more of the following adaptive skill areas: communication, self care, home living, social skills, community use, self-direction, health and safety, academic functioning, leisure and work.

An intellectual disability is commonly referred to in terms of its severity. A person is said to have a ‘mild, moderate or severe intellectual disability’. This is often a clinical definition of intellectual disability based on the person’s intelligence quotient (IQ). A person with an intellectual disability will have an IQ of 70 points or below.

There are over 300 known causes of intellectual disability. These causes include brain damage at birth, an illness such as meningitis or encephalitis or a genetic disorder such as Down Syndrome.

Intellectual disability may affect a person in the following ways:

  • the person may take longer to learn things;
  • the person may have difficulty in reading and writing;
  • it can affect how the person talks;
  • the person may find it difficult to maintain eye contact;
  • the person may have difficulty understanding abstract concepts;
  • the person may need education and training adapted to their level of understanding and development; and
  • the person might find it difficult to adapt to new situations.

Clients may want to hide their intellectual disability and often give a false appearance of understanding. This is referred to as a ‘cloak of competence’.

It is estimated that between 2.3% to 3% of the general population of NSW have an intellectual disability [1].

IDRS’s Position on Sterilisation and the Model Bill

IDRS supports national legislation for the prohibition of sterilisation of children generally (regardless of whether they have an intellectual disability) and judicial authorisation of sterilisation only where the procedure is necessary and appropriate in order to save the child’s life or to prevent serious damage to the child’s health (therapeutic reasons). IDRS opposes the Model Bill in its current form principally because it does not clearly prohibit sterilisation in all non-therapeutic circumstances, it only applies to children with intellectual disabilities and it applies a broad test for the judicial authorisation of sterilisation. IDRS thus feels that these three issues must be resolved by the SCAG and that the Model Bill be substantially redrafted. Consequently, the structure of our submissions on the Bill are divided into two parts (a) a general outline of IDRS’s position on sterilisation covering the three major faults with the Model Bill in its current form, and (b) suggestions of how the Model Bill could be redrafted to reflect IDRS’s position on sterilisation.

It is IDRS’s strong view that sterilisation of children with intellectual disabilities, as with a child without an intellectual disability, should be prohibited except for circumstances where the procedure is necessary and appropriate in order to save the child’s life or to prevent serious damage to the child’s health (‘necessary and appropriate test’). IDRS believes that it is only for a Court or Tribunal to authorise a sterilisation after having determined that the procedure is necessary and appropriate in order to save the child’s life or to prevent serious damage to the child’s health. Thus, any legislation concerning sterilisation must be prohibitory, but provide for a process whereby sterilisation can be judicially authorised in extremely limited therapeutic circumstances.

People with an intellectual disability have the same human rights as people without intellectual disabilities. They have the right to bodily integrity, the right to procreate, the right to sexual pleasure and expression, the right for their bodies to develop in a normal way, and the right to be parents. IDRS believes that the sterilisation of a child in circumstances other than where there is a serious threat to the health or life of that child effectively denies the child present and future enjoyment of her or his human rights. This is so particularly by dint of the permanent effects of sterilisation.

In particular, children with an intellectual disability have the same right as children without an intellectual disability not to be sterilised [2].

The Committee on the Rights of the Child, in its concluding observations on Australia made recently during its fortieth session in 2005, encouraged Australia to prohibit sterilisation of children with disabilities in recognition of their human rights:

While the Committee notes the States’ party’s initiatives addressing the rights of children with disabilities, it is concerned about the paucity of information on disabled children, especially when it comes to data on disabled indigenous children, alternative care for children with disabilities and children with disabilities living in remote or rural areas. The Committee also notes that a governmental working group is addressing the issue of sterilization of children with so-called “decision-making” disabilities.

In light of the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities (General Assembly resolution 48/96) and of the Committee’s recommendations adopted at its day of general discussion on “Children with disabilities” (see CRC/C/69), the Committee encourages the State party to actively pursue its current efforts and:

(e) To prohibit the sterilization of children, with or without disabilities, and promote and implement other measures of prevention of unwanted pregnancies, e.g. injection of contraceptives, when appropriate [3].

To create a legislative power only to sterilise children with an intellectual disability perpetuates the myth that sterilisation is a disability issue – a procedure which is common or somehow more acceptable for children with disabilities. Brady has argued that:

Sterilisation applications are not about medical problems but about social values, notions of worth, assumptions about the nature of intellectual disability and about a lack of services. In other words where there is no disease and the procedure would not be recommended for a non-disabled child with the same physical condition, the proposing of differential treatments ought be critically investigated [4].

We suspect that those operations which are not required to prevent death or serious harm to health would only be proposed for children with an intellectual disability. We do not agree that there should be two rules – one which applies to people with an intellectual disability and one which applies to everyone else.

Given the narrow grounds of ‘necessary and appropriate’ on which IDRS feels the prohibition on sterilisation can be waived, IDRS therefore does not support a ‘best interests of the child’ test for the authorisation of sterilisation procedures. Such a test places too much focus on the short term, immediate circumstances that the child is in, which is likely to be related to the parenting needs of the child, and gives little consideration to the long term interests of the child, particularly once she reaches adulthood. The application of the ‘best interests’ test might, in reality, be more concerned with countering the economic and emotional difficulties that parents and carers experience in an environment drastically lacking in services and support for parents and carers of children with intellectual disabilities. As Dowse and Frohmader argue:

To unpack the term ‘best interests’ reveals a complex interplay of factors that have very little to do with the young woman’s rights and more to do with social factors and the ‘burden of caring’. In making judgements about best interests it is crucial that we are clear about whose best interests are really at stake. We need to be clear about whether ‘best interests’ is judged according to human rights principles or whether the judgement is about the ‘best compromise between the competing interests’ of parents, carers, service providers and policy makers. To really determine ‘best interest’ for women and girls with disabilities it is crucial to focus on the fact that a person will be subjected to an irreversible medical procedure with life long consequences without informed consent [5].

Such problems can, and should, be overcome through greater services and support. IDRS firmly believes that sterilisation should not be a substitute for adequate provision of services and support. As Brady and Grover state, ‘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’ [6].

Focusing on ‘best interests’ not only concentrates on the interests of the parents, it also fails to consider the longterm interests of the child as an adult. Sterilisation has permanent, life-long consequences which are likely to be more significant and apparent during adulthood. Sterilisation will result in the permanent inability to reproduce [7] and lowers parenting options to adoption or foster care. There are possible long term health effects associated with sterilisation [8]. Moreover, sterilisation can be detrimental to sexual pleasure on the basis that the uterus and the cervix play an important part in sexual satisfaction [9].

It is IDRS’s position that sterilisation should never be permitted on the following grounds:

a. Intellectual disability: Simply because a child has an intellectual disability per se does not mean that he or she should be arbitrarily deprived of their capacity to reproduce. That an intellectual disability could be grounds for sterilisation reflects outdated eugenic fears and prejudicial attitudes that people with intellectual disabilities are “eternal children” and therefore could not possibly raise children of their own.

b. Eugenics: The view that people with intellectual disabilities should be sterilised in order to prevent them from reproducing children who themselves will have a disability is problematic for two reasons. First, this is not necessarily the case as not all intellectual disabilities are genetic. Secondly, and more importantly in IDRS’s view, such a fear is based on the discriminatory assumption that people who have disabilities are of lesser worth as human beings and do not deserve to exist. Moreover, children with an intellectual disability are capable of enjoying a fulfilling life – the lower standard of living that people with intellectual disabilities might experience is due to a disabling environment rather than something inherent to their biological makeup.

c. Mitigate the effects of, or prevent, sexual abuse: Sterilisation will not overcome the vulnerability of children with intellectual disability to sexual abuse. In fact, sterilisation might lead to a cycle of neglect insofar as a child who cannot fall pregnant is arguably a less risky target because sexual abuse can go more easily undetected [10]. The vulnerability to sexual abuse of children with intellectual disabilities is a product of such factors as social isolation, inadequate screening of support workers and carers, lack of educational and protective behaviour programs, and the failure to take seriously complaints made of sexual abuse due to the perceived unreliability of people with intellectual disabilities [11].

d. Manage menstruation: Problems associated with menstruation, such as hygiene, pad changing, and inappropriate behaviour (such as smearing), can be overcome through menstrual management teaching, support and education opportunity [12]. The focus on menstruation as a burdensome bodily function that should be removed reflects discrimination against females in general. Sterilisation will not repress bodily functions common to both sexes – urination and defecation – which are arguably more ‘burdensome’ given that they occur every day of the year rather than the 5 days per month that menstruation occurs [13].

e. Contraception: There is no data to confirm that female children with an intellectual disability are significantly at risk of pregnancy, thus demonstrating the ‘socio-political nature'[14] of this ground for sterilisation which is grounded more in irrational eugenic fears and stereotypes of people with intellectual disabilities as over-sexed. The use of sterilisation as a means of contraception is also problematic because ‘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'[15].

These five factors are completely irrelevant to the decision making process, even where there are other reasons for the sterilisation.

We believe that no regulatory structure, whether it be a court or a tribunal, will ultimately be successful in completely protecting people with an intellectual disability from unwanted and unnecessary sterilisation operations unless the decision makers are forced to confront and address their own views on disability, in particular, the rights of people with disabilities to bodily integrity and their right to share in all aspects of life, including the right to express their sexuality and bear children. As Brady and Glover note, ‘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’ [16]. Whilst both males and females are sterilized, the greater number of sterilisations are performed on women. This raises many issues about the role of women in our society and misconceptions about women’s bodies. Decision makers should be forced to confront their own views on women’s bodies, in particular women’s menstrual cycles and fertility rights.

IDRS notes and strongly agrees with the position of the NSW Government’s on sterilisation as expressed by the NSW Attorney General Bob Debus to the SCAG in 2004:

The [NSW] Government supports the submission from Women With Disabilities Australia that sterilisation of minors with a decision-making disability should be prohibited except where there is a threat to life or health. Sterilisation is a matter for adulthood and should only be carried out in children for immediately needed therapeutic purposes. � NSW will not adopt any uniform legislation unless the Government is sure that sterilisation is prohibited except where there is a serious and immediate threat to health or life.

IDRS’s Position on the Model Bill

Model Bill’s application only to children with an intellectual disability

IDRS is concerned about the Model Bill’s focus only on children with intellectual disabilities. IDRS thus argues that the Model Bill apply to all children, regardless of whether they have an intellectual disability. However, in light of the reality that the children who are sterilised are usually children with intellectual disabilities, IDRS argues that the Model Bill should be particularly attentive to the needs of children with an intellectual disability in the judicial process.

IDRS recommends that:

1. The Model Bill apply to all children, regardless of whether they have an intellectual disability.

Short title (draft cl 1)

IDRS opposes the reference to ‘regulation’ in the title of the Model Bill. Whereas to prohibit an act is to forbid it, to regulate an act is to control something which is generally permitted. As sterilisation should be completely forbidden, except in those limited instances where it is necessary and appropriate to save a child’s life or to prevent serious damage to the child’s health, the Act should be focused on prohibition. The reference to ‘regulation’ in the title of the Act could result in a broader interpretation of the provisions of the Act authorising sterilisation and hence a more generous approach to judicial authorisation of sterilisations. A focus on regulation, and hence permissibility, might also marginalise the penal provisions in the Model Bill (ss 5-6) and shift attention away from their enforcement.

IDRS recommends that:

2. The reference to ‘regulation of sterilisation’ and the reference to ‘with intellectual disability’ in the title of the Model Bill be removed and the title of the Act be changed to Children (Prohibition of Sterilisation) Bill 2006.

Long title & Objects of Model Bill (draft cl 3)

Being mindful of the use of the objects of an Act in the interpretation of its provisions [17], IDRS feels that the long title and draft cl 3 of the Model Bill should more strongly emphasise that sterilisation of children is prohibited.

Although the first paragraph of the long title does refer to prohibition, the second paragraph of the long title, in referring to the conferral of jurisdiction on the Tribunal to authorise sterilisation ‘in certain circumstances’, is not worded strongly enough and should instead refer to the authorisation of sterilisation in ‘limited’ circumstances.

IDRS recommends that:

3. The term ‘certain’ in paragraph 2 of the long title to the Model Bill be replaced with ‘limited therapeutic’ so that the paragraph reads: ‘to confer jurisdiction on the State Administrative Tribunal to authorise sterilisation procedures to be carried out on children in limited therapeutic circumstances.’

Draft cl 3 of the Model Bill, in speaking only in terms of un/authorisation, fails to acknowledge that the fundamental legal principle is the prohibition of sterilisation (with judicial authorisation being a subsidiary of this). In particular, draft sub-cl 3(b), in stating that one of the two objects of the Model Bill is to ‘facilitate a nationally consistent approach to authorising sterilisation procedures’ without any accompanying reference to prohibition again suggests the permissibility of sterilisation.

Moreover, consistent with IDRS’s rights-based approach to sterilisation, we object to the reference to ‘protect children’ in sub-cl (a). Sterilisation should not be framed merely as an issue of protection but rather as an issue of human rights. Hence, the objects should affirm the rights of children, particularly the rights of children with intellectual disabilities. IDRS recommends that a list of human rights principles, as they pertain to sterilisation, accompany the affirmation of the rights of children with disabilities in draft cl 3 of the Model Bill. This would be similar to the list of human rights principles, as they pertain to disability service provision, in Schedule 1 of the Disability Services Act 1993 (NSW). Given the permanent nature of sterilisation, such an affirmation of rights must also address those rights which may be more relevant to adulthood, such as sexual enjoyment, reproduction and parenting.

IDRS recommends that:

4. Draft cl 3 be amended to be both prohibitory and rights affirming and to read:

The objects of this Act are –

(a) to prohibit sterilisation procedures being carried out on children except where the procedure is authorised by the Family Court of Australia, Supreme Court or State Administrative Tribunal;

(b) to facilitate a nationally consistent approach to the prohibition of sterilisation procedures being carried out on children and the authorisation of sterilisation procedures to be carried out on children in limited therapeutic circumstances; and

(c) to ensure that any decisions to authorise sterilisation procedures to be carried out on children are made in accordance with their human rights.

5. A schedule be inserted into the Model Bill which lists the rights of children as they pertain to sterilisation.

Definition of ‘intellectual disability’ (draft cl 4)

In relation to a legislative definition of ‘intellectual disability’ IDRS supports the widely accepted international definition of the term consisting of three elements – a significantly below average IQ, two or more deficits in adaptive behaviour and acquired during the developmental period (that is, before 18 years) [18].

However, the technical, legislative definition of ‘intellectual disability’ is really a tangential issue to what IDRS considers as the more significant issue of the lack of knowledge of intellectual disability reflected in the Model Bill and 2006 Issues Paper. That, in relation to a Model Bill applying only to children with an intellectual disability, the question of what is an intellectual disability is one of the key unresolved issues for the SCAG (e.g. the term ‘intellectual disability’ is undefined in the Model Bill and the Issues Paper asks ‘Who do the draft provisions apply to? What is an intellectual disability’) is of significant concern to IDRS. This suggests that there is a lack of knowledge on the part of the SCAG as to what intellectual disability is and, more broadly, the issues that are affecting people with intellectual disabilities, particularly as they pertain to the permanent and irreversible procedure of sterilisation.

IDRS also considers very alarming and dangerous the suggestion in the Issues Paper that psychiatric disabilities could also be included in the definition of intellectual disabilities. Not only does this confuse two disabilities (if the SCAG wish the Model Bill to encompass psychiatric disability, it should specify ‘intellectual or psychiatric disability’)[19], but is also highlights that the SCAG see disability as the core eligibility requirement for sterilisation. All of this confirms IDRS’s argument that the Model Bill should not be limited in its application to children with an intellectual disability.

The lack of knowledge of intellectual disabilities is alarming given that sterilisation has permanent effects which include removing the capacity to reproduce – it suggests a general disinterest in the rights and interests of those whom the Model Bill will affect. This reflects the comments made by Dowse and Frohmader of Women With Disabilities (Australia) in 2001 that:

The limited debate that has occurred in the area of sterilisation and reproductive health has seldom included or involved women with disabilities. They, particularly women with intellectual disabilities, have had little opportunity to speak about their experiences, or participate in legislative, policy and/or program development [20].

IDRS therefore strongly recommends consultations not be limited to ‘stakeholders’, but also extend to people with intellectual disabilities themselves. To exclude them from the debate removes their subjectivity and distances the legislation from the very real consequences it will have on many such people’s lives [21].

IDRS recommends that:

6. ‘Intellectual disability’ be defined as: ‘a significantly below average intellectual functioning existing concurrently with two or more deficits in adaptive behaviour.’

7. That prior to any conclusions be reached as to the content of the Model Bill, the SCAG inform themselves of intellectual disability and the issues facing people with intellectual disabilities, particularly through consultations with people (particularly women) with intellectual disabilities.

8. That the Model Bill apply to all children and that intellectual disability not be an eligibility requirement for sterilisation.

Offences (draft clauses 5, 6)

IDRS supports the initiative contained in the Model Bill of offences for unauthorised sterilisation procedures. However, IDRS argues that the terms of the offence are too narrow. It should not only be an offence to actually carry out the sterilisation procedure, but also to be knowingly involved in the arranging, procuring or counselling of an unauthorised procedure. Such a broader offence would cover third parties who have sought the carrying out of the procedure on the child in the first place.

IDRS also recommends that the draft cl 5(5) be deleted on the basis that no sterilisation procedure (regardless of its therapeutic purpose) should be carried out without judicial authorisation.

IDRS recommends that:

9. The Model Bill include as an offence the act of a third party in seeking the carrying out of the procedure on the child where an unauthorised sterilisation procedure is carried out.

10. That draft cl 5(5) be deleted.

Definition of “Tribunal” (draft cl 4), Conferral and exercise of jurisdiction (draft cl 7) & Constitution of Tribunal (draft cl 8)

IDRS supports the conferral of jurisdiction to the Guardianship Tribunal [22] although, as discussed below in relation to draft clauses 9 and 10, we do not support the scope of that jurisdiction. We believe that the rights of the child would be best protected by a tribunal comprised of people from different professional and community backgrounds. Our experience of the Guardianship Tribunal in NSW is that its procedures are less adversarial and ‘legalistic’ than those of a court. These more informal procedures are in many cases more conducive to a resolution which protects the rights of the person with the disability. IDRS also supports the conferral of jurisdiction to the Guardianship Tribunal on the basis that the decision makers should have specialist training in the issues and considerations affecting sterilisation (and other medical) procedures.

We also support the Guardianship Tribunal as it has the capacity to serve a diversionary and educational function insofar as the hearing of such applications can provide preliminary counselling and advisory services to applicants and their children. Hearings should not be conducted until the court or tribunal is satisfied that all parties have had an opportunity to receive counselling/advice, access to needs-based services and have fully explored alternative options to the proposed procedure.

Capacity for child to consent to sterilisation procedure (draft cl 5(4))

IDRS believes that sterilisation, other than in those circumstances where it is necessary and appropriate in order to save the child’s life or to prevent serious damage to their health, is an issue for adulthood. We believe that even if a child wants a sterilisation operation when such an operation is not necessary to save the child’s life or prevent serious damage to the child’s health, the operation should not proceed. IDRS therefore believes that the issue of consent is completely irrelevant other than in the narrow circumstances where the sterilisation is necessary and appropriate to save a child’s life or prevent serious damage to the child’s health.

In those limited circumstances where sterilisation is necessary and appropriate in order to save the child’s life or to prevent serious damage to their health, we believe that wherever possible the views of the child should be sought as to whether or not the child wants the operation to proceed.

IDRS recommends that:

11. Draft cl 5(4) be amended to read:

A person does not commit an offence against subsection (2) if the sterilisation procedure is carried out only after –

(a) the sterilisation procedure is necessary and appropriate to save the child’s life or to prevent serious harm to the child’s health;

(b) a court or tribunal has found that the child is capable of giving informed consent to the sterilisation procedure; and

(c) the child has given that consent.

 

Matters Tribunal must be satisfied of (draft cl 9) & Best interests of child (draft cl 10)

IDRS opposes draft cl 9. IDRS argues that to exercise jurisdiction in authorising a sterilisation, the Tribunal should be satisfied of two factors: that the procedure is necessary and appropriate in order to save their life or to prevent serious damage to their health and that the child has consented or is unable to consent.

In relation to the first factor, the question of whether the child has an intellectual disability is completely superfluous – the focus should only be on whether the child is capable of consenting to the procedure.

In relation to the second factor, IDRS strongly opposes the authorisation of sterilisation procedures in any circumstances other than where the procedure is necessary and appropriate in order to save their life or to prevent serious harm to their health, which the broader ‘best interests’ factor would allow. IDRS recommends that a test similar to that which already governs the Guardianship Tribunal’s exercise of jurisdiction to authorise sterilisation procedures in relation to people over 16 years old be adopted such that sterilisation cannot be authorised except where the Tribunal is satisfied that:

a. it is necessary to save the patient’s life, or to prevent serious damage to the child’s health, and

b. the treatment is the only or most appropriate way of treating the child and is manifestly in the best interests of the child [23].

Whilst the best interests question is still present in this test, it is subsumed within the broader questions of necessity and appropriateness.

We acknowledge that even the ‘necessary to save life or to prevent serious damage to health’ can, like all therapeutic/non-therapeutic distinctions be manipulated. It also runs the risk of bringing the decision to sterilise a child back into the exclusive province of medical practitioners, something the majority in Marion’s case quite rightly cautioned against. For example, in those cases where it is asserted that the child’s deep fear of the sight of blood would cause her irrevocable psychological damage, evidence other than that from medical practitioners should be required. For this reason, in addition to supporting this test, we would also support decision makers being provided with a list of factors they must consider prior to making a sterilisation decision.

We generally support the list of factors going to best interests but we think that it should be made clear that some factors should be given more weight than others and that some factors are irrelevant.

The primary factors, which are essential factors to consider, include:

 

  • the treatment is necessary and appropriate to save the child’s life or prevent serious damage to his/her health;
  • there is no reversible, less invasive, and/or non-medical alternative; and
  • the child’s right to bodily integrity and his or her human rights must be respected.

 

The secondary factors which the court may consider, but which are clearly of less importance, are the views of the child’s family and carers. We certainly support the view that parents have an important role in the life of their children. On the other hand, it has to be acknowledged that in the case of sterilisation of young children with an intellectual disability there is often a conflict of interest between the demands on parents and carers and the child’s right to bodily integrity. We believe this to be true even in those cases where parents have the best of intentions.

In considering the question of the child’s health in relation to a sterilisation procedure purportedly for therapeutic reasons, the Tribunal/Court must have regard to whether non-permanent, reversible and less intrusive alternatives are available. As Brady points out, a lack of education about and consideration of alternatives is often a key reason for parents seeking the sterilisation of their child:

IDRS recommends that:

In my view the Court and key stakeholders must give parents every opportunity to participate in an investigation of alternative options and information. If this does not happen then they are unlikely to make an informed decision. This situation has serious ramifications for the legal process particularly given the significant weight the court gives to the wishes of the parents. In these circumstances it seems to me to be incumbent on the court to determine whether or not the wishes of the parents are in fact “informed” wishes rather than misguided expressions premised on fears or lack of options. Most parents are distressed about the prospects of surgical intervention and if given practical options will opt for less drastic alternatives [24].

Completely irrelevant factors are those that are those that are listed succinctly in draft cl 10(4) of the Model Bill.

IDRS recommends that:

12. The reference to intellectual disability in cl 9(a) be removed and the reference in draft cl 9(c) to ‘best interests’ be removed and substituted with the appropriate and necessary test. Draft cl 9 be amended to read:

The Tribunal must not authorise the sterilisation procedure unless satisfied that –

(a) the child is incapable of giving informed consent to the sterilisation procedure; and
(b) the child is unlikely to regain or attain the capacity to give informed consent; and
(c) the sterilisation procedure is necessary and appropriate.

13. Draft cl 10 be substantially amended such that the clause contains an elaboration on the factors to take into consideration when determining whether the sterilisation procedure is appropriate and necessary.

Representation of child (draft cl 15)

IDRS believes that hearings should take the form of an investigation or inquiry rather than an adversarial contest and be conducted without formality or strict adherence to the rules of evidence. The child who is the subject of the application must have a separate legal representative provided through legal aid. The cost of legal representation for the applicants/parents/ guardians should be met through legal aid. This is particularly in light of the fact that parents’ interests can conflict with the child’s interests.

For similar reasons, it is also important that children have a support person who is not involved in the proceedings. This person need not necessarily be a professional, but someone with demonstrated knowledge and experience in the rights (rather than ‘interests’) of children.

14. Amend draft cl 15(2)(b) so that a support person must be appointed, amend to read:

(2) The Tribunal –

…….

(b) must appoint a person who has with demonstrated knowledge and experience in the rights of children.

Intervention by Equal Opportunity Commissioner (draft cl 16)

IDRS supports the intervention of the NSW Anti-Discrimination Commissioner and the Commissioners of the Commonwealth HREOC, particularly in light of the human rights framework that IDRS argues the Model Bill should adopt.

Referral of matter for investigation and report (draft cl 18)

It is important that the Tribunal inform itself of all the relevant issues surrounding a particular sterilisation application and hence, that it have the power to refer a matter relating to the proceeding for investigation and report. However, IDRS is concerned that draft cl 18 of the Model Bill, in providing the Tribunal with this power, also provides in draft sub-cl (4) that if the Tribunal does not receive this report by a specified ‘due-date’ it can ultimately determine the matter without that report. This is of concern because, not only have we found that government departments can be slow in responding to requests for information but more significantly, if the Tribunal feels it needs to seek further information on a particular issue in order to be able to make a properly informed decision, to then make the decision without this information suggests a decision would be ill-informed.

Moreover, it is also important that the applicant for the sterilisation inform themselves of the issues, particularly the long term effects of the sterilisation procedure and the alternatives to sterilisation, prior to bringing an application for the Tribunal to begin with.

IDRS recommends that:

15. Draft cl 18 be amended so that the Tribunal cannot make a decision if they have sought information pursuant to cl 18 until they received that information. If a particular third party is not forthcoming with the information, the Tribunal must approach other parties in order to ultimately obtain the information which will enable them to make an informed decision.

16. A provision be inserted into the Model Bill providing that an application to the Tribunal for sterilisation must clearly specify, inter alia, that all possible alternatives to sterilisation have been considered and details of why the alternatives to sterilisation are inappropriate and that the applicant is aware of the long term effects of sterilisation and specify what those effects are.

Should you wish to discuss any of these matters further, please contact Linda Steele, Solicitor (Policy & Law Reform) on 9318 0144.

Yours truly,
Meredith MacDonald
Executive Officer


Endnotes

[1] NSW Council for Intellectual Disability, Facts Sheet “Numbers of People in NSW with and Intellectual Disability”, http://www.nswcid.org.au/publications/fs/statistics.html.

[2] For example, Article 2(1) of the United Nations Convention on the Rights of the Child provides that ‘States Parties shall respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind, irrespective of the child’s � disability …’. Article 23(1) of the United Nations Convention on the Rights of the Child provides that ‘States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.’ Moreover, Article 23(2) provides that: ‘States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child’s condition and to the circumstances of the parents or others caring for the child.’

[3] United Nations Committee on the Rights of the Child, Fortieth Session, Consideration of Reports Submitted by States Parties under Article 44 of the Convention, Concluding Observations: Australia, CRC/C/15/Add.268, 20 October 2005, paras 45, 46(e).

[4] Susan Brady, ‘The Sterilisation of Children with Intellectual Disabilities’ (1998) 33 Australian Journal of Social Issues 155, 164. To aid in this ‘critical investigation’, Brady suggests a series of questions, one involving a ‘but for’ test, ie, would the girl not be sterilised, but for her intellectual disability: Susan Brady, ‘The Sterilisation of Children with Intellectual Disabilities’ (1998) 33 Australian Journal of Social Issues 155, 164-165.

[5] Leanne Dowse & Carolyn Frohmader, Moving Forward: Sterilisation and Reproductive Health of Women and Girls With Intellectual Disabilities (2001) 14-15. See also Susan Brady, John Briton & Sonia Grover, The Sterilisation of Girls and Young Women: Issues and Progress (2001) 8.

[6] Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 35.

[7] We strongly support the views of Brennan J in Marion’s Case who said ‘In any event, though pregnancy be a possibility, sterilisation, once performed is a certainty. If a non-therapeutic sterilisation could be justified at all, it could be a failure of care, and sterilisation is not the remedy for this failure. Nor should it be forgotten that pregnancy and motherhood may have a significance for some intellectually disabled girls quite different from the significance attributed by other people. Though others may see her pregnancy and motherhood as a tragedy, she, in her world, may find those events an enrichment of her life.: Secretary, Department of Health and Community Services v JMB and SMB (Marion’s Case) 1992) 175 CLR 218 at 322.

[8] Brady and Grover have argued that there has been insufficient research into the long-term medical effects of sterilisation, however, some studies have indicated significant health effects associated with hysterectomy. For example, it may involve early menopause with hormone deficiency effects, increased risk of cardio-vascular disease, increased morbidity rates. Brady and Glover attribute this lack of concern of the long term medical effects to a stereotypical view that ‘both medically and socially � the uterus has no function other than reproduction’: Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 34.

[9] Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 34.

[10] Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 32; Leanne Dowse & Carolyn Frohmader, Moving Forward: Sterilisation and Reproductive Health of Women and Girls With Intellectual Disabilities (2001) 17.

[11] On this last point, see Intellectual Disability Rights Service, Making a Statement: An Exploratory Study of the Barriers Facing Women with an Intellectual Disability when they Make a Statement to the Police About Sexual Assault http://www.idrs.org.au/pubs/statement.html.

[12] Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 31.

[13] Brady has stated that: ‘It is true that hysterectomy will solve the problem of menstrual management for care givers. The child will no longer bleed for five days a month. However, she will continue to urinate and defecate for the rest of her life. This is a greater nursing management problem. Why is there an inconsistency of approach to menstruation as opposed to other bodily functions?’: Susan Brady, ‘Invasive & Irreversible: The Sterilisation of Intellectually Disabled Children’ (1996) 21 Alternative Law Journal 160, 162. ‘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.’: Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 31-32. ‘Arguments for the elimination of menstruation are primarily about social taboos � Interestingly, � the disposal of approximately half a cup of menstrual blood over the menstrual cycle on behalf of women with disabilities seems to present a greater problem than the regular disposal of daily toileting products. This attitude prevails despite the fact that menstrual fluids are essentially of less risk to hygiene than toilet products. Arguments for the removal of cyclic menstruation on the basis of hygiene need to be closely examined.’: Susan Brady, ‘The Sterilisation of Children with Intellectual Disabilities’ (1998) 33 Australian Journal of Social Issues 155, 158-159.

[14] Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 33.

[15] Susan Brady, ‘The Sterilisation of Children with Intellectual Disabilities’ (1998) 33 Australian Journal of Social Issues 155, 160.

[16] Susan M Brady & Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A Legal, Medical and Social Context (1997) 35.

[17] Interpretation Act 1987, s 33.

[18] For a discussion of definitions of intellectual disability, see New South Wales Law Reform Commission, Report 80: People With an Intellectual Disability and the Criminal Justice System (1996) 52-74.

[19] IDRS does not support the extension of the Model Bill to psychiatric disability to the same extent that it does not support the exclusive application of the Model Bill only to people with intellectual disabilities.

[20] Leanne Dowse & Carolyn Frohmader, Moving Forward: Sterilisation and Reproductive Health of Women and Girls With Intellectual Disabilities (2001) 2.

[21] The SCAG might also wish to refer to a report of the National Forum on Sterilisation and Reproductive Health for Women and Girls with Disabilities held in Sydney in February 2001 which contains personal stories of women who have experienced sterilisation: Leanne Dowse & Carolyn Frohmader, Moving Forward: Sterilisation and Reproductive Health of Women and Girls With Intellectual Disabilities (2001).

[22] The NSW Attorney-General’s Department has confirmed that the ‘Tribunal’ will be the Guardianship Tribunal.

[23] This test is contained in s 45 of the Guardianship Act 1987. See also s 175 of the Children and Young Persons (Care and Protection Act) 1998 which provides that the Guardianship Tribunal must be satisfied the sterilisation is necessary to ‘prevent serious damage to the child’s psychological or physical health’.

[24] Susan Brady, ‘Invasive & Irreversible: The Sterilisation of Intellectually Disabled Children’ (1996) 21 Alternative Law Journal 160, 163.