ACT Disability Advisory Council: Submission in response to the Standing Committee of Attorneys General (SCAG) Issues Paper ‘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 Australian Capital Territory (ACT) Disability Advisory Council. Copyright 2006.


 

Submission of the ACT Disability Advisory Council in response to the September 2006 Standing Committee of Attorneys General (SCAG) Issues Paper ‘Sterilisation of Children with an Intellectual Disability’. November 2006.

David Snell
Legislation and Policy Branch
Department of Justice and Community Safety
GPO Box 158
Canberra City ACT 2601

Dear Mr Snell

I acknowledge receipt of a letter from Brett Phillips, Deputy Chief Executive of the Department of Justice and Community Safety (JACS), dated 12 October 2006 which I am informed arrived with our Secretariat on 30 October 2006.

While I acknowledge the apologies for the late provision of documents, we need to express disappointment at the timeframes which require our input before 8 November in advance of the Standing Committee for Attorneys-General (SCAG). I am also displeased that we were not able to obtain an accessible format copy of the draft model bill and more background by JACS.

The sterilisation of children with a disability is a fundamental human rights issue for the disability community that deserves the proper attention of JACS and the fullest possible consideration from the Council and other bodies.

Our comments are therefore limited to the issues paper from SCAG dated September 2006.

Our understanding is that the ACT Human Rights Act covers “safety and security of the person” and that this local legislation covers forced sterilisation and effectively outlaws it.

As we understand it the draft model provisions represent a strengthening of the presumption against sterilisation of minors in most circumstances and they bar the application of sterilisation as a contraceptive method of convenience, for eugenic purposes and menstruation management.

There are some exceptions in the case of a sterilisation procedure directed at treating an organic malfunction or disease that is likely to cause serious or irreversible damage to the child’s physical health and the final phase of terminal illness.

They also seek to provide, through uniformity, protections against forum shopping for approval of procedures and provide certain other procedural barriers.

To the extent the Bill achieves the above points they may be an improvement on the current cross jurisdictional situation in some circumstance, however ACTDAC does not support the Government’s current proposal to develop a nationally consistent approach to the authorisation procedures required for the lawful sterilisation of minors with a decision-making disability.

Sterilisation can be justified only in circumstances where it is necessary to save life or preserve the health of the individual.

We would make the following observations about some issues and tests, which should be applied across the draft model provisions and raised in the ACT’s representations to SCAG:

1. Fertility is a part of human experience and is a basic human right and related to the right to home and family and the integrity of the person mentioned in the recently adopted draft UN convention [1] and locally supported in the Vision and Values for Disability in the ACT [2].

2. Permanent interference with or removal of potential bodily capacities in children who do not yet have those fully developed capacities must always be regarded as basically unsound and problematic.

3. There should always be a fundamental presumption against the sterilisation of minors, whether or not they could, in someone’s view, provide informed consent.

4. The reality is that no young child, who is not yet fertile, with or without a disability, could be really said to be able to provide fully informed consent to sterilisation i.e., to do so with a clear understanding of the whole of life consequences of that decision. An inability to provide what the Tribunal understands as informed consent should not in any way lessen the presumption against the procedure with a person with a disability as with any child.

5. The draft model provisions should encompass and prevent emergent procedures such as oestrogen induced ‘growth attenuation’, reported recently in the United States, which may involve sterilisation but which could in fact be packaged under other headings in a decision making process. It should also encompass procedures that may induce sterilisation as a secondary consequence in both boys and girls.

6. The subclause which discusses the issues which must be considered by a Tribunal in determining whether a sterilisation is in the best interests of the child must include a statement to the effect that the tribunal will generally presume against granting such a request unless overwhelming and compelling evidence is provided to the contrary.

7. By any measure of the standards applied by the community a total loss of reproductive ability represents a profound reduction in individual capacity and wellbeing. The burden of proof must be on those seeking the sterilisation order to prove beyond all reasonable doubt that the procedure is essential to provide a major net permanent increase in the wellbeing of the child.

8. Considering the stated test of ‘whether the sterilisation procedure is necessary for the child to lead a life in keeping with the child’s needs and capacities‘ is inherently circular, problematic and subjective.

a. As mentioned, according to most community norms sterilisation represents a reduction in personal capacities;

b. Capacity is about human potential and therefore changeable and unquantifiable at one point in time. Ability to exercise capacity is dependent on many externalities including the barriers people experience across life domains in the community. We have a clearly stated community objective of removing those barriers [3];

c. How can we say we know a child’s full capacities? How do a child’s capacities relate to the capacities of a fertile adult? If we don’t know the capacities of a child and we don’t know how they will change over time, then how can we apply the capacities of a child to make decisions to limit another future capacity – for fertility – for that person as an adult?; and

d. Caution must be exercised – in real life people with disabilities are accustomed to confounding pessimistic forecasts about their limited capacities by medical professionals. Often the predictions are simply wrong.

9. We do not understand the intended effect of the clause that reads ‘If the child is capable of giving informed consent to the sterilisation procedure or is unlikely to regain or attain that capacity, the Tribunal must not authorise the sterilisation procedure’:

10. We do not feel able to comment on whether the provisions have broader application at this time.

Thank you for the opportunity to comment. To discuss please contact me on 0413 135 731 or the Secretariat via email – dacsecretariat@ozemail.com.au

Regards
Craig Wallace
Chair
ACT Disability Advisory Council
8 November 2006

Endnotes

[1] On Friday 25 August 2006, member States of the United Nations, including Australia, reached agreement on a convention to protect the rights of people with disability called the draft “Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities”. This includes two highly relevant articles: Article 23: RESPECT FOR HOME AND THE FAMILY which provides that States Parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, so as to ensure that:…….(c) Persons with disabilities, including children, shall retain their fertility on an equal basis with others; and Article 17 PROTECTING THE INTEGRITY OF THE PERSON which provides that every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

[2] The ACT’s Vision and Values state that all people with disabilities achieve what they want to achieve, live how they choose to live, and are valued as full and equal members of the ACT community and provide for self determination all people with disabilities and/or their guardians are free to make or influence the decisions and choices that affect the course of their lives. This empowers them to realise their self-worth in every aspect of life.

[3] For instance, Challenge 2014 – a ten year vision for disability in the ACT.