People With Disability Australia (PWDA):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 People With Disability Australia (PWDA). Copyright 2006.


 

People With Disability Australia (PWDA)
Submission to the Standing Committee of Attorneys-General
Sterilisation of Children with an Intellectual Disability
Issues Paper
Draft Model Bill
10 November 2006

1. About People with Disability Australia Incorporated

1.1. People with Disability Australia Incorporated (PWD) is a national disability rights and advocacy organisation. Our primary membership is made up of people with disability and organisations mainly constituted by people with disability. We have a cross-disability focus – we represent the interests of people with all kinds of disability. PWD is a non-profit, non-government organisation.

1.2. Our vision is of a socially just, accessible and inclusive community, in which the human rights, citizenship, contribution, potential and diversity of all people with disability are respected and celebrated. This vision underpins everything that we do.

1.3 We believe that people with disability, irrespective of our age, gender, cultural or linguistic background, geographic location, sexuality, or the nature, origin, or degree of our disability:

  • Have a right to life, and to bodily integrity
  • Are entitled to a decent standard of living, an adequate income, and to lead active and satisfying lives
  • Are people first, with human, legal, and service user rights that must be recognised and respected
  • Are entitled to the full enjoyment of our citizenship rights and responsibilities
  • Are entitled to live free from prejudice, discrimination and vilification
  • Are entitled to social support and adjustments as a right, and not as the result of pity, charity or the exercise of social control
  • Contribute substantially to the intellectual, cultural, economic and social diversity and well-being of our community
  • Possess many skills and abilities, and have enormous potential for life-long growth and development
  • Are entitled to live in, and be a part of, the diversity of the community
  • Have the right to participate in the formulation of those policies and programs that affect our lives
  • Should be empowered to exercise our rights and responsibilities, without fear of retribution.

2. Primary Contact

Therese Sands
Senior Advocate
People with Disability Australia
PO Box 666
Strawberry Hills NSW 2012
Telephone: 02 9370 3100
Fax: 02 9318 1372
E-mail: tsands@pwd.org.au

3. Introduction

At the outset, PWD would like to state that we strongly support the development of uniform national legislation to protect children and young people [1] from non-therapeutic sterilisation.

We would also like to reiterate our position, as stated in our response [2] to the 2004 Issues Paper that non-therapeutic sterilisation of children and young people is a procedure to which neither a child or young person, or a parent, or a court or tribunal may consent. Uniform national legislation must prohibit this human rights abuse and outline the circumstances in which only therapeutic sterilisation can occur.

PWD is strongly opposed to the draft model Bill, Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006 and the principles it is based on, many of which are discussed in the Issues Paper, Sterilisation of Intellectually Disabled Minors. The circumstances and principles proposed in the draft model Bill are essentially permissive of non-therapeutic sterilisation; they are not protective of the rights of children and young people.

While we note with some relief the statement in the covering letter that the draft model Bill does “not represent a settled policy position at this time”, we believe that this draft model Bill represents a significantly regressive and harmful position for the Standing Committee of Attorneys-General (SCAG) to be considering.

While our position on sterilisation is clearly articulated in our response to the 2004 Issues Paper, we make the following additional points to counter the principles and direction outlined in the draft model Bill and associated Issues Paper.

4. Specific Issues

4.1. All children and young people

While the SCAG discussions were initially focussed on non-therapeutic sterilisation of children and young people with a decision-making disability, we note that the draft model Bill is aimed at authorisation procedures for non-therapeutic sterilisation of children and young people with intellectual disability.

On page 3 of the Issues Paper, there is a discussion about how to define intellectual disability, with a suggestion that the definition should not include “disabilities that are solely physical or sensory”, but that consideration should be given to “what types of disabilities should be included in the definition”, such as psychiatric disability.

We are alarmed by this discussion. Confusing and broadening terms used to define or describe different types of disability is not only inappropriate and inaccurate, but also presents enormous risks to the human rights of children with disability. Explicit in this discussion is the premise that ‘intellectual disability’ is the qualifying factor for allowing non-therapeutic sterilisation to occur, and that ‘intellectual disability’ can be defined in such a way as to include a whole range of children and young people with disability who can be subjected to non-therapeutic sterilisation.

This is particularly alarming when considering section 10 (4) (a)-(c) in the draft model Bill, which seemingly protects children and young people from sterilisation for “(a) eugenic reasons; (b) to remove the risk of pregnancy resulting form sexual abuse; (c) because it is a convenient contraceptive or menstruation management measure”. The qualifying statement following this section states that the “Tribunal may authorise a sterilisation procedure to be carried out if the reasons for doing so include a reason in paragraph (a), (b) or (c) as long as the procedure is also in the best interests of the child”. How can arguments about eugenics, predictions of pregnancy arising from predictions of rape, or convenience ever be part of decision-making in this area?

This qualifying statement undermines any protection children and young people with intellectual disability – potentially defined to include children and young people with a whole range of impairments and conditions – should expect from legislation that has been supposedly developed in response to the prevalence of unlawful and inappropriate sterilisation of children and young people with disability in the absence of medical need. Allowing any of the reasons included in (a), (b) or (c) to be part of the rationale for deciding what is in a child or young person’s best interests is abhorrent. It opens the door to allowing this human rights abuse to not only continue, but to be condoned by Australian law.

We argue that national uniform legislation should be developed that makes non-therapeutic sterilisation unlawful, and that elaborates the circumstances in which only therapeutic sterilisation can occur. Non-therapeutic sterilisation should be unlawful for all children and young people, and no groups of children and young people can be exempt from this prohibition. Pinpointing ‘disability’ as a qualifying factor for authorising non-therapeutic sterilisation is discriminatory and dangerous.

Developing national uniform legislation to prohibit non-therapeutic sterilisation is also in line with the recent conclusion made by the United Nations (UN) Committee on the Rights of the Child in its review of the Australian Government’s progress in meeting the Convention on the Rights of the Child (CROC). In reference to the “Governmental Working Group�addressing the issue of sterilization of children with so called ‘decision making’ disabilities” [3], the Committee concluded that the Australian Government should:

“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 [4].”

The only exception to court or tribunal authorisation of therapeutic sterilisation would be where an emergency procedure is required, which will have the direct or indirect effect of sterilisation of the child or young person, where this is reasonably necessary to save life or prevent serious damage to the person’s health.

While the reference to ‘a person’s health’ includes both the ‘physical and mental health’ of a person, we argue that ‘mental health’ needs to be clearly defined within the legislation to only refer to diagnosed clinical conditions that are in line with medically recognised diagnostic tools, such as the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV). This would enable children and young people with mental health conditions, such as gender identity dysphoria [5], who may seek surgery that results in sterilisation to be afforded the same protections as other children.

Importantly, such a definition would also clarify that decision-making about therapeutic sterilisation could not rely on predictions of ‘psychological harm’ to a person or to medical opinion about ‘psychological harm’.

We argue that such predictions of ‘psychological harm’ and the reliance on medical opinion about ‘psychological harm’ have a high susceptibility to misuse and have been applied permissively by courts rather than protectively. It has primarily been used as a justification for sterilisation of girls and young women with disability in response to predictions or opinions about ‘psychological harm’ caused by menstruation, such as assertions about ‘psychological harm’ caused by the girl or young woman’s possible or actual fear of blood [6].

4.3. Issues of consent

4.3.1. Capacity to consent

In section 9, the draft model Bill confers on State and Territory guardianship boards and tribunals responsibility for deciding whether a child or young person with intellectual disability is incapable of giving informed consent to a sterilisation procedure and whether the child or young person is unlikely to regain or attain the capacity to give informed consent.

PWD argues that while it may be possible to assess whether a child or young person is incapable of giving informed consent at a particular stage in their life, it is not possible to truly assess whether a child or young person will be likely to regain or attain the capacity to give informed consent in the future.

Medical and other professional opinions that may be taken into account by tribunals are necessarily limited to medical understandings of disability, in contrast to social and development models that recognise that with the relevant educational and social supports, children and young people with disability develop and mature, and may develop the capacity to provide informed consent.

The views of parents, carers and / or service providers can be limited by personal considerations of what is best for the child or young person, and as such are unlikely to be objective or independent opinion about a child or young person’s capacity to consent. This is borne out by the personal stories recounted by women with disability who were sterilised as girls without medical need, many considered incapable of providing informed consent. Later as adults, they have realised that sterilisation has occurred and understand fully what this means. In many cases, and as a result of the non-therapeutic sterilisation procedure, these women have developed serious physical and psychological health conditions and face lifelong negative consequences in developing and maintaining relationships and general wellbeing [7].

While we accept that some children and young people with disability may never regain or attain the capacity to give informed consent, we argue that the possibility can never be discounted. While this possibility exists, a tribunal can never authorise an irreversible procedure with lasting life-long effects such as sterilisation except in instances where it is necessary to save the person’s life or to prevent a serious damage to the person’s health [8].

4.3.2. Consent given by child or young person

In section 5 (4), the draft model Bill allows for sterilisation to occur without offence where a child or young person gives informed consent to a sterilisation procedure if a court or tribunal has found that the child or young person is capable of giving informed consent to the procedure.

This provision is in line with the principle established in Gillick v West Norfolk and Wisbech Area Health Authority that a child or young person is capable of giving consent to medical treatment where the child or young person is of sufficient intelligence and maturity to understand fully what is proposed. The Gillick principle, endorsed by the High Court of Australia in 1992 in Marion’s Case, is one key underlying principle of discussions about sterilisation in Australia.

PWD believes, in light of discussion about case law relating to consent to other serious and irreversible treatment for children and young people [9] that this principle is no longer necessarily upheld. The two cases referred to in this discussion, Re A [10] and Re Alex [11] are concerned with requests for surgical treatment that will change the gender identity of the young people concerned, with a secondary consequence of this treatment being sterilisation.

In both cases, the young people concerned have diagnosed medical conditions. In the case of Re A, the surgical treatment was for the physical condition, congenital adrenal hyperplasia of a 14-year-old. In the case of Re Alex, the treatment was for the psychological condition, gender identity dysphoria of a 13-year-old.

In both cases, the Family Court found that while each young person generally understood the nature of their conditions, the proposed treatment and the consequences of this treatment, they did not have sufficient maturity to fully assess the serious nature of the effects of the treatment. The Family Court found in both cases that the young people were not able to give consent to the required treatment on their own behalf.

In both cases, the Family Court also went on to find that the parents in the case of Re A and the guardian in the case of Re Alex could not give consent to the medical treatment either.

In other words, there are some types of medical treatment that are irreversible and so serious that a child or young person who has the capacity to consent should not be allowed to consent. The seriousness and irreversible nature of the surgery warrants court or tribunal authorisation only.

This has real and serious implications for allowing a child or young person to consent to a sterilisation procedure, as is allowed for in section 5 (4) of the draft model Bill. The discussion about Re A and Re Alex highlights that there have been recent cases where adults, who received surgical interventions to treat physical and psychological gender identity conditions as children have claimed damages or testified about the negative effects to their psychological well-being and self-identity [12].

Section 5 (4) of the draft model Bill can not be supported. Sterilisation procedures should not be performed based on the consent of a child or young person, or a parent or guardian, and to do so should be made an offence.

4.4. Best interests of the child

The draft model Bill provides that a tribunal can authorise sterilisation if it is satisfied that a child or young person with intellectual disability is incapable of giving informed consent, is unlikely to gain this capacity, and it is in ‘the best interests of the child’.

We argue that sterilisation is only ever in ‘the best interests of the child’ if it is performed for therapeutic purposes. Our argument is based on the following points.

Misuse of the principle of ‘best interests of the child’:
This principle has been used permissively to enable inappropriate sterilisation procedures to be performed, largely because ‘best interest’ decisions have been based on the views of medical practitioners and other professionals, parents and guardians and others who are deemed to have an interest.

As discussed above in section 4.2.1, these opinions are limited to medical aspects and subjective views. They can neither provide the basis for understanding the potential best interests of the child or young person as the child or young person develops and matures into adulthood, nor predict the lifelong negative consequences that may affect the child or young person’s physical and psychological well-being and identity, as borne out by the personal stories of those who were sterilised as children.

In Marion’s Case, where it was agreed that the child’s best interests were viewed as paramount, the majority of High Court judges also commented that “in the circumstances with which we are concerned, the best interests of the child will ordinarily coincide with the wishes of the parents” [13].

While Marion’s Case might be the applicable common law, it is poor social policy. How can decision-making about a procedure that has irreversible and lifelong consequences with such significant risks to physical and mental health, and that infringes on a person’s human rights – rights to bodily integrity, to enjoy adulthood through associated physical and hormonal development, to sexual pleasure and expression, to experience reproductive capacity and become parents – ever be based on an assumption that the subjective views of parents are equivalent to the ‘best interests of the child’?

In addition, such a position is grounded in outdated understandings of disability and human rights [14], misconceptions and negative attitudes about disability, and lack of knowledge about services and supports that are the appropriate substitutes to non-therapeutic sterilisation. Given that the majority of non-therapeutic sterilisation procedures are carried out on girls and young women with disability, we also agree with arguments [15] that decision-makers are influenced by their own negative views of menstruation and fertility in relation to girls and young women with disability.

To counteract outdated understandings, misconceptions, lack of knowledge and negative views, we strongly argue that the process to develop national, uniform legislation about sterilisation must be inclusive of the views and knowledge of those who have been sterilised, of children and young people with disability, of human rights advocates who work with people with disability, and service providers who provide appropriate services and supports in this area.

Not treatment for children and young people without disability: Performing a sterilisation procedure on a child or young person without disability in the absence of medical need is clearly unacceptable and an abuse of human rights. Non-therapeutic sterilisation is clearly not in the best interests of the child or young person without disability. The same standard must exist for all children and young people. If sterilisation would not be the recommended option in the same clinical circumstances for a child or young person without disability than it is not in the best interests of the child or young person with disability.

Human rights: Children and young people with disability have the same rights as children and young people without disability. Determinations about what is in the best interests of the child need to be grounded in human rights. Identifying children and young people with intellectual disability as a subset of children and young people that can be sterilised, implies that sterilisation is about disability and not about rights, or that there are some groups of children and young people that have lesser rights than others.

As stated in section 4.1 above, the UN Committee on the Rights of the Child clearly state that all children and young people have the same right not to be sterilised in the absence of medical need. In January 2006, during the review of the Australian Government’s progress in implementing the UN Convention on the Elimination of All Forms of Discrimination Against Women, the UN Review Committee questioned the Government about whether the SCAG was developing protections for girls and women with disability from non-therapeutic sterilisation [16]. In August 2006, agreement was reached on the draft UN Convention on the Rights and Dignity of Persons with Disability, which in Article 7 states that:

“States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children” [17].

To counteract the potential and actual problems associated with decision-making in relation to ‘the best interests of the child’, we argue that uniform national legislation about sterilisation should explicitly state situations in which sterilisation could never be authorised:

  • Sterilisation on the grounds of disability;
  • Sterilisation for eugenic reasons;
  • Sterilisation purely for contraceptive purposes;
  • Sterilisation as a means of masking or avoiding the consequences of sexual abuse;
  • Sterilisation for menstruation management purposes; or
  • Sterilisation performed on young women prior to the onset of menstruation, based on predictions about future problems that might be encountered with menstruation.

Although each of these circumstances would already be covered by the general prohibition on sterilisation, their iteration makes this explicit, and would have an important educative effect, and assist in preventing the reimportation of these basis for sterilisation into the analysis of a person’s health and the best interests test as has occurred in a number of cases in the Family Court of Australia.

We also argue that the following principles, to be used by a court or tribunal in considering an application for authorisation of therapeutic sterilisation should be enacted into the legislation:

  • The fundamental human rights of the child or young person.
  • The best interests of the child or young person.
  • The capacity of all human beings for physical, intellectual, emotional, psychological and social development.
  • The least restrictive alternative.
  • The harm the procedure may cause to the child or young person in the immediate, short or long-term.
  • The right of a child or young person to be heard in relation to any matter affecting him or her.

4.5. The concept of permanent infertility

The definition of ‘sterilisation’ in the draft model Bill is based on an intention or likelihood to make a child or young person permanently infertile. We believe that the use of the word ‘permanent’ in the definition could preclude procedures such as tubal occlusions and vasectomies that have some potential to be reversed. In other words, these procedures may be performed outside court authorisation on the assumption that they do not fall within the legislation. It must be clear within any definition of sterilisation that these procedures are included.

Conclusion

PWD is strongly opposed to the draft model Bill, Children with Intellectual Disabilities (Regulation of Sterilisation) Bill 2006 and the principles on which it is based.

The draft model Bill does not protect the human rights of children and young people, and we believe that this it is a significantly regressive and harmful position for the Standing Committee of Attorneys-General (SCAG) to be considering.

We argue that the SCAG should concentrate on the development of uniform, national legislation that protects the human rights of children and young people by prohibiting non-therapeutic sterilisation of all children and young people, without exception. Such legislation should also elaborate the very limited circumstances in which therapeutic sterilisation of children and young people can occur, as discussed in this submission.

Integral to the development of this legislation, and to counteract the prevailing misunderstandings, misconceptions, lack of knowledge and negative views, should be the views and personal stories of those people who have been sterilised and the views of children or young people, in particular children and young people with disability.

6. Appendix – PWDA Response to the 2004 Issues Paper

21 June 2004
Mr M Ronald
Legislation and Policy Division
NSW Attorney General’s Department
GPO Box 6
SYDNEY NSW 2000

Dear Mr Ronald:

Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability

Thank you for the invitation to contribute our views in relation to proposed uniform national legislation in relation to non-therapeutic sterilisation of minors with decision-making disability.

At the outset I would like to indicate that we strongly support the development of uniform national legislation to protect children from non-therapeutic sterilisation.

Our views in relation to the matters raised for comment are attached. However, we would also like to raise a number of general concerns about the content and tenor of the Issues Paper.

Of greatest concern to us is the insufficient weight given to need to protect minors with decision-making disability from non-therapeutic sterilisation. The primary emphasis of the discussion paper is not on the prohibition of this human rights abuse, but on the elaboration of the circumstances and principles under which it can occur. The circumstances and principles proposed are essentially permissive rather than protective. In our view, non-therapeutic sterilisation of children is a procedure to which neither a parent, or a child, or a court or Tribunal may consent.

Of equal concern is the lack of attention given to ensuring consistency in the law and procedure applying to applications for authorisation of procedures that will result in sterilisation of a child or young person between the Family Court of Australia and State and Territory Guardianship Tribunals, and between these jurisdictions and State and Territory Supreme Courts, which are capable of dealing with applications for sterilisation of children and young people both in their inherent jurisdiction, and in their statutory child welfare jurisdiction. It is essential that the law and procedure of each jurisdiction is strengthened and harmonised, and that forum shopping across these jurisdictions is prevented. Uniform national legislation cannot be achieved unless it applies to all jurisdictions.

We are very concerned about the apparent lack of knowledge of, or regard for, the work undertaken on this issue by the Family Law Council of Australia in its 1994 Report: Sterilisation and Other Medial Procedures on Children. We do not agree with the Family Law Council’s proposals for reform in all respects. However, in our view, they provide a much more considered treatment of this issue, and a much better starting point for reform, than is provided by this Issues Paper. We believe this Report ought to be closely examined before any further work is done on the development of uniform national legislation.

The Issues Paper also fails to consider the issue of extra-territoriality. We frequently hear anecdotally of children and young people with disability being taken outside Australia to be sterilised because of the restrictions on this procedure imposed by domestic law. States and Territories cannot usually legislate with extra-territorial effect, this being a power ceded to the Commonwealth on Federation. It is therefore essential that the proposed uniform national legislation provide children and young people taken outside Australia with the same protection as they would have within Australia.

Finally, we are also at a loss to understand why the proposal for uniform national legislation to deal with non-therapeutic sterilisation is limited to children and young people. Non-therapeutic sterilisation of adults with a decision-making disability is also an issue of major concern in Australia and it is urgent that it is addressed.

Please contact me if you would like to discuss any of the matters raised in this submission further.

Yours sincerely
PHILLIP FRENCH
Executive Director

The Non-Therapeutic Sterilisation of Minors with a Decision-Making Disability
Submission by People with Disability Australia

1. Should the proposed uniform decision-making principles set out the Issues Paper be based on the Australian Guardianship and Administration Committee Principles?

No, these decision-making principles are entirely inadequate. In general, we support the recommendations of the Family Law Council of Australia (FLC) in its 1994 Report Sterilisation and Other Medical Procedures on Children with respect to the decision-making principles that ought to be applied, subject to some qualifications and exceptions. These are detailed below:

First, the uniform national legislation must provide that it is unlawful to sterilise a child or young person under the age of 18 except where the procedure is necessary to save life or to prevent serious damage to the person’s physical health (FLC recommendation 1(b) and 3(b).

Note that FLC recommendation 3(b) would include serious damage to the person’s ‘psychological health’ as an exception to the general prohibition on sterilisation. We do not support such an exception, particularly in light of its susceptibility to misuse as is demonstrated in a number of decisions of the Family Court of Australia, where an exception of this nature has been applied permissively rather than protectively.

Note also that we do not support FLC recommendation 3(c), which establishes limited exceptions to the general prohibition for contraceptive or menstrual management subject to these exceptions being in the best interests of the child. In our view sterilisation of a child or young person is never justified, separate from the physical health exception, for menstrual management, or for contraceptive purposes.

Second, the legislation must provide that any procedure that will result either directly or indirectly in sterilisation of a child must be authorised by a Court or Tribunal under legislation. The consent of the child and/or of her/his parents or other guardian is not sufficient (FLC recommendation 1(c)).

We would add that this stipulation must be subject to a very limited exception: ‘where an emergency procedure is required, which will have the direct or indirect effect of sterilisation of the child, where this is reasonably necessary to save life or prevent serious damage to the person’s physical health.’

Third, the legislation ought to indicate four situations in which sterilisation could never be authorised. These are:

 

  • Sterilisation for eugenic reasons;
  • Sterilisation purely for contraceptive purposes;
  • Sterilisation as a means of masking or avoiding the consequences of sexual abuse; or
  • Sterilisation performed on young women prior to the onset of menstruation, based on predictions about future problems that might be encountered with menstruation (FLC recommendation 3(a)).

 

Although each of these circumstances is already covered by the general prohibition on sterilisation, their iteration makes this explicit, and would have an important educative effect, and assist in preventing the reimportation of these basis for sterilisation into the analysis of physical health and the best interests test as has occurred in a number of cases in the Family Court of Australia.

2. Should decision-making principles be set out in the Bill or the Guidelines?

We believe the decision-making principles we have proposed above should be incorporated into the Bill. It is essential that these principles have the status and force of legislation if they are to provide appropriate protection of children and young people from non-therapeutic sterilisation.

3. Should guiding principles such as those set out on page 5 of the AGAC Protocol be included in the Bill?

If the Bill is appropriately protective of the human right of children and young people not to be subject to non-therapeutic sterilisation, there will be very limited discretion exercised by Courts and Tribunals, and consequently little need for principles to be enacted to guide the exercise of such discretion.

We would support the enactment of the following principles to which the Court or Tribunal must have regard in considering an application for approval of a procedure that will result in the sterilisation of child or young person:

(a) The fundamental human rights of the child or young person.

(b) The best interests of the child or young person.

(c) The capacity of all human beings for development.

(d) The least restrictive alternative.

(e) The right of a child or young person to be heard in relation to any matter affecting him or her.

Proposed principles (a) and (b) place emphasis on the fundamental human rights and best interests of the child or young person as the overriding principles to be applied in decision-making. Proposed principles (c) and (d) place emphasis on children and young people as capable of ongoing learning and personal development, and the requirement for interventions to be proportionate and least restrictive of the person’s right to autonomy and bodily integrity. Principle (e) seeks to ensure that children and young people have the opportunity to participate in decisions that affect them, both personally and through appropriate independent representation of their interests.

We do not support the inclusion of AGAC principle (g) or (h) as we do not believe the fundamental human rights, or the best interests, of children and young people should be subordinated to the needs of others or to cultural or religious beliefs in any circumstances.

4. With respect to who can make an application in relation to the non-therapeutic sterilisation of a minor:

(a) Should the Bill provide that one or both parents of the child or another person who can demonstrate that they have a ‘sufficient’ or ‘proper’ interest in the matter be able to make an application to the Board or Tribunal in respect of a minor with a decision-making disability?

For reasons given above, we do not believe any person ought to be able to make an application for non-therapeutic sterilisation of a child or young person. Non-therapeutic sterilisation ought to be outlawed entirely.

We do not believe that applications to Guardianship and Administration Boards or Tribunals should be subject to a restrictive standing test. The focus of the inquiry ought to be on the merit of the application, not on whether the applicant is entitled to bring it. Restrictive standing tests in this jurisdiction will result in the neglect or abuse of human rights, not their protection. We therefore believe ‘any person with a genuine concern for the welfare of the person’ ought to be able to bring any application before a Guardianship and Administration Tribunal. This would include a parent or guardian, but also permit other persons to do so, where this is appropriate in the specific circumstances of the case.

(b) Should there be any other criteria identifying who may make an application under the model Bill?

No, for the reasons given above.

5. With respect to the definition of “child” and “minor,” which of the options outlined in the Discussion Paper is the most appropriate? Would another proposal be more appropriate?

We believe the Bill should apply to “children and young people” and define a child or young person as “a person under the age of 18 years.” Reference to “young persons” would more appropriately reflect the dignity and status of young people over the age of 12 years, and would be consistent with progressive terminology used in other areas of children and young persons and the law.

It is unnecessary to refer to “disability” in the definition of “child and young person.” The purpose of the Bill ought to be to prevent non-therapeutic sterilisation of children and young people per se – it is not necessary to distinguish children and young people with disability; they are children and young people like any others. The risk in identifying children and young people with disability specifically is that it may suggest that a different, and lesser, standard of protection, may apply to them as compared with other children and young people.

6. With respect to the definition of “non-therapeutic sterilisation,” which of the options outlined in the Issues Paper is the most appropriate?

We do not support either options 1 or 2. Option 1 inappropriately incorporates the concept of ‘intention,’ and ‘permanent infertility,’ neither of which are intrinsic to the plain meaning of the word. Option 2 conflates an attempted definition of sterilisation (which has the same problems as option 1) with an attempt to proscribe circumstances where sterilisation is permissible. This is not appropriately done in a definition.

We support the proposal of the Family Law Council of Australia, which proposes that ‘sterilisation’ be defined to mean:

“an intervention which results (either directly or indirectly) in the termination of an individual’s capacity to reproduce.” (at paragraph 2.04, page 18).

This is a simple definition that appropriately focuses on the result of the procedure rather than on its intention, or whether it is permissible.

7. In relation to the decision-making ‘tests’ set out in the Issues Paper:

(a) Which test, if any, is the most appropriate?

It is important to reiterate that we do not believe any person, Court or Tribunal ought to be able to authorise non-therapeutic sterilisation of a child or young person. Non-therapeutic sterilisation ought to be outlawed entirely.

In considering an application for authorisation of a purported therapeutic procedure, we consider the “but for test” (Option 1) to be the most appropriate to apply, as it is most protective of the human rights of the child or young person.

(b) Should more than one of the ‘tests’ set out in the Issues Paper be used? For example, should the last resort test be used with the best interests test as the over-riding principle?

Options 2 and 3 usefully incorporate the principle of the least restrictive alternative, and the best interests principle respectively, however, we believe these are two of a number of principles that should be applied in reaching a decision. They are therefore best incorporated into the Bill as principles to be applied, rather than as independent tests.

(c) Should the decision-making test/s be set out in detail? If so, should the test/s be set out/stated in the legislation or Guidelines?

We believe the “but for test” must have the status and force of legislation, otherwise it will not necessarily be recognised and applied by Courts or Tribunals at first instance or in appellate proceedings. We propose that the test be formulated as follows:

In determining an application for authorisation of a procedure in relation to a child or young person with disability that will result (either directly or indirectly) in the sterilisation of a child or young person, the Court or Tribunal must determine if the procedure would be authorised in the same or similar circumstances in relation to a child or young person without a disability.

If the procedure would not be authorised in relation to a child or young person without disability, it ought not be authorised in relation to a child or young person with disability.

8. Should the model Bill or Guidelines deal with procedural matters, such as those outlined in the Issues Paper, or should these matters be left to individual jurisdictions?

We believe as a matter of general principle that procedural matters should not be included in the Bill. Procedures should be more readily amended than their incorporation into legislation would allow.

However, we are very concerned about the current proliferation of differing legal principles and procedures for dealing with applications for sterilisation of children and young people across jurisdictions. We are concerned that this leads to different outcomes for children and young people in the same or similar circumstances.

To address this concern we suggest that the Bill provide a regulation making power that would enable the Commonwealth Attorney to develop regulations for handling of applications and conduct of proceedings involving applications for authorisation of procedures that will result in the sterilisation of children and young people.

Regulations ought then to be developed immediately following the passage of the Bill, and regularly reviewed and revised in light of best practice innovations. The regulation making power ought also to provide that the Attorney must consult widely in the development of regulations under the Act.

9. Should the model Bill or Guidelines set out a statement of principle in relation to procedural matters? For example, a statement that the board or tribunal must be able to access any information relevant to making an informed decision?

Yes. The regulation making power should state that the Attorney has the power to make regulations with respect to the following matters:

  • Standards for information required in order to assess an application for authorisation of a procedure that will result in sterilisation;
  • Standards for the preparation of medical, psychological, and social work reports relating to applications for procedures that will result in sterilisation;
  • Standards for intake of applications for sterilisation, including for the referral of applicants to alternative sources of social support, including counselling and advisory services, psychological services, respite care etc.
  • Required qualifications and ongoing education for judicial officers and others involved in the determination of applications for sterilisation;
  • Requirements for the appointment of separate representatives for children and young people who are the subject of an application for sterilisation, including in relation to the appropriate qualifications and ongoing education of separate representatives.
  • Requirements for the conduct of proceedings more generally.

10. In relation to the powers of inquiry of the board or tribunal:

(a) Should the model Bill contain a provision empowering the board or tribunal to order an investigation into sterilisation matters?

Yes. It is essential that the Board or Tribunal has the explicit power to investigate an application for sterilisation of a child or young person. It is essential that the Bill specify a power of inquiry so that it is clear that the Board or Tribunal is not bound by the information put before it by the parties, as would be the case in adversarial proceedings. This should include the power to compel the production of documents and other evidence and to subpoena and examine witnesses on their own motion.

(b) If so, who should carry out the investigation? For example, should be the Office of the Public Advocate or Public Guardian?

In our view, the Board or Tribunal ought to have the power to appoint counsel to assist in the investigation of an application. It ought also to be able to commission independent reports from specialist assessors, for example, from a clinical psychologist or medical specialist. This approach is consistent with the inquisitorial nature of State and Territory Guardianship and Administration Tribunals, which already have a general responsibility to investigate all applications brought before them. With respect to the procedure of the Family Court of Australia and State and Territory Supreme Courts, this is an important innovation in procedure that should be legislated.

We do not believe that the Office of the Public Advocate or Public Guardian are appropriate bodies to fulfil this function – the former has an advocacy function, and both have supported decision-making functions. They are not investigative bodies.

In any event such bodies do not exist in each State and Territory, and their functions vary significantly. They are unlikely to have the expertise or capacity to undertake the work required by a sterilisation application.

(c) What would be the resourcing implications of such a provision?

In our view court or tribunal ought to be liable for the costs of the investigation function. We do not envisage that a large number of applications will be made for authorisation of procedures that will result in the sterilisation of a child or young person, particularly if non-therapeutic sterilisation is outlawed. The costs of this function are therefore unlikely to be prohibitive. However, to the extent that this function does result in extra costs, these costs must be met, in the interests of justice, through increased appropriations to the court or tribunal where necessary.

11. In relation to the medical evidence requirements discussed in the Issues Paper:

(a) Should these criteria be contained in the Bill or in the Guidelines?

As discussed above, we believe the Bill ought to contain a general provision empowering the Attorney General to make regulations with respect to these matters. Detailed guidelines should then be set out in regulations.

(b) Is complete uniformity required on the issue of evidence or would it be more appropriate to allow each jurisdiction to develop its own provisions in this regard?

We believe that complete uniformity is desirable. It is essential that there is a consistent approach to the assembling and analysis of evidence in sterilisation applications across all jurisdictions. There should be no difference in approach or outcome no matter where an application is dealt with.

The development of a consistent approach to evidence will also assist in reducing forum shopping between jurisdictions.

12. In relation to the discussion in the Issues Paper about the need for a child’s representative:

(a) Is it necessary for States and Territories to have uniform provisions?

Yes. We believe there should be a consistent and robust approach to the separate representation of the interests of the child or young person across jurisdictions, including in the Family Court of Australia and State and Territory Supreme Courts.

(b) If so, should the Bill require a child’s representative to be appointed in sterilisation cases?

Yes. Sterilisation applications raise questions of fundamental human rights and it is therefore essential that the child or young person’s interests are separately and robustly represented.

(c) Alternatively, or additionally, should the Bill require that an advocate or advisor from the Office of the Public Advocate, the board or tribunal or other relevant organisation assess on a case-by-case basis whether the child needs separate representation?

No. For the reason given above, we believe a separate representative is necessary in every case.

It is also appropriate for any non-legal advocate of the child or young person to have standing before a court or tribunal dealing with an application for authorisation of a procedure that will result in sterilisation. Non-legal advocates will often have detailed personal knowledge of the individual and can assist in promoting the human rights of the person.

(d) What resource implications would these requirements have?

In our view the court or tribunal ought to be liable for the costs of the separate representative. As noted above, we do not envisage that a large number of applications will be made for authorisation of procedures that will result in the sterilisation of a child or young person, particularly if non-therapeutic sterilisation is outlawed. The costs of separate representation are therefore unlikely to be prohibitive. However, to the extent that this role does result in extra costs, these costs must be met, in the interests of justice, through increased appropriations to the court or tribunal where necessary.

13. In relation to sanctions relating to the performance of an unauthorised sterilisation:

(a) should the model Bill contain a criminal offence for unauthorised sterilisation?

Yes. We support option 1 – the establishment of a specific offence. In the absence of a specific offence, it is unlikely that the general criminal law will be applied to the unauthorised sterilisation of children and young people.

(b) If so, should the nature of the offence and/or penalties be uniform?

Yes. We believe the nature of the offence and/or penalties should be uniform. The offence should be simply stated as follows: “performs, or is knowingly involved in arranging, procuring, or counselling an unauthorised procedure resulting either directly or indirectly in the sterilisation of a child or young person under the age of 18 years.”

We believe the offence is commensurate with the offence of ‘malicious wounding or infliction of grievous bodily harm’ under State and Territory criminal law, and therefore that the penalty ought also to be commensurate with this offence. In NSW, this offence carries a maximum penalty of imprisonment for 7 years. It is notable that this is the maximum penalty for a person who carries out an unauthorised ‘special treatment’ (which includes sterilisation) under the Guardianship Act, 1987 (NSW) (s 35). It is also the maximum penalty for the offence of Female Genital Mutilation under the Crimes Act, 1900 NSW, which is an offence of comparable seriousness.

We believe the performance, or involvement in arranging, procuring or counselling of an unauthorised sterilisation ought to also carry a severe professional disciplinary penalty. The Bill should therefore state that conviction of this offence is conclusive evidence of gross professional misconduct, which will usually carry with it suspension or withdrawal of professional registration.

(c) What should be the elements of the proposed offence be?

We believe the elements of the offence ought to be:

(i) Perform of an unauthorised procedure; or
(ii) Knowingly arrange, procure, or counsel an unauthorised procedure;
(iii) Resulting either directly or indirectly in sterilisation;
(iv) On a child or young person under the age of 18 years;
(v) Absence of a defence of ’emergency treatment immediately necessary to save life or prevent serious damage to the person’s physical health.’

(d) Who should be capable of being liable?

We believe the offence should apply to ‘any person performing or involved in arranging, procuring or counselling the performance on an unauthorised sterilisation or a child or young person.’ This would potentially include a parent or guardian involved in arranging an unauthorised procedure resulting in sterilisation. No person should be exempt from liability for an abuse of fundamental human rights.

14. What matters, as set out in the Issues Paper, should the Guidelines cover?

Refer to response to question 9 above.

15. Which elements of the Australian Guardianship and Administration Guidelines are adaptable for use in the model Guidelines for State and Territory guardianship boards and tribunals?

In our view, the Australian Guardianship and Administration Guidelines provide a good starting point for the development of guidelines for dealing with applications for authorisation of procedures that will result in the sterilisation of a child or young person.

However, as outlined above, it is our view that the Bill must contain a prohibition on non-therapeutic sterilisation, and require much more robust testing of proposed therapeutic procedures that will result either directly or indirectly in sterilisation of a child or young person. If this approach is adopted in the Bill, the existing guidelines will need to be significantly revised to take account of these new legal requirements.

The Guidelines must also be revised so as to apply to the Family Court of Australia and to State and Territory Supreme Courts.

16. What additional matters, if any, should be included in the Guidelines?

The Guidelines should be revised to incorporate those matters referred to in our response to question 9 above.

17. Are there any additional matters which should be raised in this paper or addressed in the model Bill or Guidelines?

Apart from the issues outlined above, we are concerned that the Issues Paper currently fails to deal with the following matters:

    • Ensuring consistency between State and Territory Supreme Courts, both in their inherent and statutory child welfare jurisdictions, the Family Court of Australia, and State and Territory Guardianship and Administration Tribunals in the law and procedures applying to applications for authorisation of procedures that will result either directly or indirectly in the sterilisation of a child or young person. In our view the Bill must achieve consistency in law and procedure across all jurisdictions.

 

    • Preventing forum shopping by applicants seeking authorisation of procedures that will result in the sterilisation of a child or young person. In our view the Bill must deal with this issue on the basis of some cross-vesting or mutual recognition arrangements, which will prevent an application being dealt with in more than one jurisdiction at a time, or consecutively, without a substantial change in the circumstances of the application.

 

    • The extraterritorial dimensions of this problem. We frequently receive anecdotal information that children and young people are taken outside Australia to undergo a sterilisation procedure due to domestic restrictions. State and Territory Governments do not have the power to legislate with extraterritorial effect, this power having been ceded to the Commonwealth on Federation. It is therefore essential that the Commonwealth legislate to provide children and young people who are Australian citizens with protection from being sterilised outside Australia.

 

  • We are also at a loss to understand why the proposal for uniform national legislation to prevent non-therapeutic sterilisation is limited to children and young people. Non-therapeutic sterilisation of adults with a decision-making disability is also an issue of major concern in Australia and it is urgent that it is addressed.

18. Details of contact person at your organisation.

For further information, or to discuss any aspect of this submission, contact:
Phillip French
Executive Director
People with Disability Australia Incorporated
PO Box 666
STRAWBERRY HILLS NSW 2012
Telephone: (02) 9319 6622
Email: phillipf@pwd.org.au

7. Bibliography

Ad Hoc Committee on a Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities (2006), Draft Convention on the Rights Of Persons With Disabilities and Draft Optional Protocol. United Nations

Brady, Susan M. and Grover, Dr Sonia (1997), The Sterilisation of Girls and Young Women in Australia: A legal, medical and social context. Human Rights and Equal Opportunity Commission

Brady, Susan., Briton, John., and Grover., Sonia (2001), The Sterilisation of Girls and Young Women in Australia – issues and progress. Human Rights Equal Opportunity Commission

Committee on the Rights of the Child (2005), Concluding Observations, 40th Session, Australia. United Nations

Dowse, Leanne and Frohmader, Carolyn (2001), Moving Forward: Sterilisation and Reproductive Health of Women and Girls with Disabilities, Women with Disabilities Australia

Parlett, Kate and Weston-Scheuber, Kylie-Maree, Consent to Treatment for Transgender and Intersex Children, in Deakin Law Review (2004), Volume 9, No.2.

8. Endnotes

[1] In this submission, the use of the term ‘children and young people’ refers to people under the age of eighteen.

[2] Our response to the 2004 Issues Paper is attached in the Appendix to this submission.

[3] Committee on the Rights of the Child (2005), Concluding Observations, 40th Session, Australia, p. 9, available on the UN Website at http://www.unhchr.ch/tbs/doc.nsf/898586b1dc7b4043c1256a450044f331/6f6879be758d0e8ec12570d9003340ba/$FILE/G0544374.pdf

[4] Ibid., p.10. Note that while the Committee refers to sterilisation in general, the reference to contraception and pregnancy implies that they are referring to non-therapeutic sterilisation as opposed to therapeutic sterilisation that is performed where the procedure is necessary to save life or to prevent serious damage to person’s health.

[5] See the discussion about this condition in the context of therapeutic sterilisation in section 4.3.2 below.

[6] For a comprehensive discussion about sterilisation as an inappropriate response to menstruation for girls with intellectual disability, see Susan M Brady and Dr Sonia Grover, The Sterilisation of Girls and Young Women in Australia: A legal, medical and social context, HREOC, 1997, available online at http://www.humanrights.gov.au/disability_rights/hr_disab/Sterilization/sterilis.doc

[7] PWD is aware of many women were these situations apply. Documentation of women’s personal stories can be found in the report by Leanne Dowse and Carolyn Frohmader, Moving Forward: Sterilisation and Reproductive Health of Women and Girls with Disabilities, Women with Disabilities Australia, July 2001, pp. 42-48.

[8] This point is also argued in the report by Leanne Dowse and Carolyn Frohmader, ibid., p. 16.

[9} Kate Parlett and Kylie-Maree Weston-Scheuber, Consent to Treatment for Transgender and Intersex Children, in Deakin Law Review, (2004), Volume 9, No.2.

[10} Re A (1996) 16 Fam LR 715.

[11] Re Alex (2004) 180 FLR 89; [2004] FamCA 297.

[12] Kate Parlett and Kylie-Maree Weston-Scheuber, op.cit., p. 6,

[13] Quoted in Susan Brady, John Briton and Sonia Grover, The Sterilisation of Girls and Young Women in Australia – issues and progress, HREOC, 2001, p. 7, available online at http://www.humanrights.gov.au/disability_rights/sterilisation/index.html

[14] See the discussion in the section, Human rights on page 10 of this submission.

[15] See in particular, Leanne Dowse and Carolyn Frohmader, op.cit; and the discussion in Section 3 of Susan M Brady and Dr Sonia Grover, op.cit.

[16] Report from the PWD member of the non-government delegation participating in the Review process.

[17] The draft text is available on the website of Disabled Peoples International at http://v1.dpi.org/files/uploads/convention/advance/AdvanceUneditedConventionText-30-08-06.doc