Medical Treatment Consent

Adjourned debate on motion of Hon. K. L. Vincent:

That this council—

1. Notes the recent New Zealand case of Charley Hooper, the now 10-year-old girl whose parents had her undergo growth attenuation treatment, meaning that she will now never grow over 130 centimetres tall, as well as a hysterectomy and ovary removal at the age of seven due to her disability;

2. Notes that this case is not unique; in fact Hooper's parents drew inspiration from the 2004 case of a child with disability in Seattle, known only as 'Ashley X', who was subjected to the same treatment;

3. Notes that the use of growth attenuation and sterilisation as a response to disability is in fact known colloquially as The Ashley Treatment;

4. Condemns the use of medical treatment on the ground of disability without the consent of the person on whom the procedure is to be performed, or significant evidence that the procedure is necessary as all other options, including additional supports, have been exhausted;

5. Calls on the South Australian government to ensure that children and adults with disability in South Australia are legally protected from forced medical treatment (or the denial of medical treatment) without consent or consent by guardians who have a clear conflict of interest;

6. Calls on the commonwealth government to ensure nationally consistent protections around growth attenuation and sterilisation of children with disabilities; and

7. Calls for a total ban on such treatments for which there is no medical indication.

(Continued from 24 February 2016.)

The Hon. S.G. WADE (20:20): I rise on behalf of the Liberal team to support the motion moved by the Hon. Kelly Vincent on medical treatment consent. As Liberals, we have a fundamental commitment to the rights of individuals. As Australian Liberals, we recognise Australia's ratification of the Convention on the Rights of Persons with Disabilities as an enunciation of the legal, social and political rights and freedoms of people with disability and our obligations under the convention. Article 1 of the convention states:

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

I would suggest to the council that two articles of the convention are particularly relevant to the motion before us tonight. Firstly, article 17 supports the rights of people with a disability to control their own bodies. Let me quote it:

Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

Secondly, Article 25 supports the right of people with disability to consent or withhold consent from medical treatment. It reads as follows:

States Parties recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.

It goes on to say that states parties shall:

Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care;

In supporting this motion, the Liberal Party reaffirms our party's core values and our nation's shared values to respect the rights of people with disability. These rights are fundamental, but the working out of those rights in the real world is by no means simple. The cases of Ashley X and Charley Hooper highlight the conflict that can emerge between the rights of people with disabilities and what other parties, such as parents and carers, believe is in the best interests of the person they care for or provide care to.

This motion highlights the rights of people with disability in relation to an emerging treatment—the Ashley Treatment—which involves growth attenuation and sterilisation. These procedures are extremely invasive and have the potential to have a significant emotional, mental and physical impact on the girls and women to whom it is administered. But let us be clear: you do not lose your rights because you have a disability. You do not lose your rights because you have a cognitive disability. You do not lose your rights because you are a woman. Like other women, females with disabilities, including intellectual disability, have the right to control their bodies and not have its development impeded without their consent.

The issues of consent to such treatment are more complex, particularly when a person with disability lives with a cognitive impairment. One of the ways that our law protects the rights of people with disability with a cognitive impairment is through the Guardianship and Administration Act 1993. Under section 61 of the act, prescribed treatment cannot be carried out on a person with a mental impairment without the South Australian Civil and Administrative Tribunal's consent.

Prescribed medical treatment is a category of medical intervention requiring special consideration. If a person cannot give effective consent because of their mental incapacity, the South Australian Civil and Administrative Tribunal is the only South Australian body that can consent to prescribed treatment on that person's behalf. The person's relative, guardian, enduring guardian or medical agent cannot provide substantive consent.

This motion, by focusing on the Ashley Treatment, does focus on particularly the medical treatments of sterilisation and growth attenuation. Sterilisation is a well-developed area in terms of both law and practice. As a matter of law, sterilisation is a prescribed medical treatment under the Guardianship and Administration Act. If sterilisation is proposed for a person with an intellectual disability, the treatment needs to be endorsed by the South Australian Civil and Administrative Tribunal.

As a matter of medical practice, let me quote the advice of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists:

In addressing issues of fertility control for women with an intellectual disability, the least restrictive option and approaches—

Members interjecting:

The PRESIDENT: The Hon. Mr Wade is speaking on a very important issue here, so please respect that.

The Hon. S.G. WADE: Thank you, Mr President—

which are similar to those one would consider for women of the same age but without an intellectual disability, are the most appropriate. Reversible methods such as long acting reversible contraceptive implants (eg., Implanon or Mirena) should be considered in preference to irreversible surgical options.

Let me reiterate the point that, as a matter of both law and practice, women with an intellectual disability are protected in South Australia. The motion highlights, however, that growth attenuation therapy is not subject to the same oversight. This treatment itself is not new. Similar treatment was administered in the 1950s to girls without a cognitive disability, or should I say not necessarily with a cognitive disability. It was particularly applied to young girls who it was believed might become very tall in an era when tall women were thought less attractive and less eligible brides. So let us not sneer at cultures which valued long necks or small feet, because we have our own peculiarities.

I have a friend who was subject to growth attenuation therapy in the 1950s as a child and she does not have a cognitive impairment. Her father was six foot seven, her son is six foot eight and she was predicted to grow to six foot two. Growth attenuation therapy was administered to her by her parents as a girl and she eventually grew to five foot 11. In other words, the therapy had an impact of three inches. Some may see the therapy as successful because she found a six-foot high man and they have been happily married for 35 years.

I think the fact that growth attenuation therapy has been used on tall girls at risk of becoming tall women is a fascinating historical insight in terms of what is called the social model of disability. The social model of disability says that disability is caused by the way that society is organised rather than by a person's impairment or difference. This model would say, for example, that tall height was being treated as a disability in the 1950s not because young girls or women were being impaired by their height but because society's response to their physical attribute was negative, so they were considered less eligible. As a person who is looked down on by a small woman, and I do not understand that, but apparently that is what was happening in the fifties.

In recent times, growth attenuation therapy is more often sought by parents and carers of children with severe disabilities, but I would suggest that the tall women or tall girls' experience of the 1950s should make us alert to respecting the rights of girls and women with a disability and alert to the fact that our views might be significantly influenced by our social response to the attribute rather than to their needs. On this point, I would share the comments provided to me on this therapy by the Australian Medical Association SA branch. I quote:

Growth attenuation therapy is controversial and inherently poses significant ethical and clinical issues. Like any medical intervention that could be applied for social reasons, it is important to hold the patient's interests as paramount—not the interests of third parties.

Later, the association states its own position in the following terms:

The AMA(SA) does not support medical interventions and treatments that don't have proven benefits for the patient. It cannot support any practice for which there is no medical indication.

The Liberal Party supports this motion. I thank the Hon. Kelly Vincent for turning a spotlight on this important issue. For me, one of the tangible questions that it has raised is whether growth attenuation therapy should become a prescribed medical treatment under the Guardianship and Administration Act. While I am yet to be enlightened by the wisdom of my party room on that particular point, I suspect that it should be. On behalf of the Liberal team, I support the motion.

The Hon. A.L. McLACHLAN (20:30): I concur with the matters raised by my honourable friend Mr Wade and I rise to add my voice in support of the motion. The motion has been moved by the Hon. Kelly Vincent in response to two cases involving forced sterilisation and growth attenuation treatment of children.

The first case, which occurred in Seattle, Washington, involved a child who has been referred to as 'Ashley X'. Ashley was born with a developmental disability and when she was six years old her parents had her undergo a full hysterectomy. She later also had her appendix removed and then underwent and completed growth attenuation treatment. It is important to note that the hospital at which they conducted the hysterectomy later admitted that the procedure was performed unlawfully because it was done without a court order. The second case, which has been brought to the attention of this chamber, is that of Charley Hooper, who was born blind and with cerebral palsy in New Zealand.

In supporting this motion, I note that under Australian law a court order is required before this type of treatment is performed. I also note that, in July 2013, the commonwealth Senate Community Affairs Reference Committee conducted a parliamentary inquiry into this issue. In its report, titled 'The involuntary or coerced sterilisation of people with disabilities in Australia', the Senate committee drew attention to a High Court decision titled Secretary, Department of Health and Community Services (NT) v JWB and SMB (1992) 66 ALJR 300. In that decision, the High Court held that decisions about non-therapeutic sterilisation of children fall outside the scope of parental authority and that court authorisation is required.

The High Court identified two reasons for finding that parents are unable to validly consent to the non-therapeutic sterilisation of their child. I will quote briefly from the judgement:

Court authorisation is required, first, because of the significant risk of making the wrong decision, either as to a child's present or future capacity to consent or about what are the best interests of a child who cannot consent, and secondly, because the consequences of a wrong decision are particularly grave.

The Senate report found that there was a strong, clear and consistent theme across the evidence to the inquiry that the regulation of sterilisation of persons with disabilities is a human rights issue. The view is held by individuals, academics and members of the medical professions as well as by disability advocates.

I thank the Hon. Kelly Vincent for bringing the issue to the attention of the chamber. There will sadly be occasions where certain treatments may be medically required, and I note that the Hon. Kelly Vincent recognised this when moving her motion by only calling for a total ban on treatments when there is not medical indication. I support the motion.

The Hon. T.A. FRANKS (20:33): I rise briefly on behalf of the Greens to also support the motion and to concur with the speakers before me, the Hon. Stephen Wade and the Hon. Andrew McLachlan, in their observations and to also congratulate the Hon. Kelly Vincent on yet again bringing issues to this place that would otherwise go undiscussed. I think those who are aware of the disability sector are aware particularly of Women With Disabilities Australia's fine work in the area of the much higher rates of sexual abuse of women with disabilities.

The Hon. Kelly Vincent has raised concerns about there being perceived protections, through the use of these procedures, against sexual abuse for people with disabilities. I think and I concur with the Hon. Kelly Vincent, in my interpretation of her speech to this motion, that this is ill-informed, because those who seek to sexually abuse others do not necessarily do so on the basis of the appearance or attributes of the person they sexually abuse. So, that is no protection whatsoever, and should be seen as irrelevant to this debate.

I also note that the Hon. Kelly Vincent, in drafting this motion and doing the research, did meet with the AMA (Australian Medical Association of South Australia) and also drew the words 'no medical indication' from the advice that she received from them. Certainly, this motion draws attention to something that the Greens have raised in this place before with regard to the transportation and harvesting of organs, and that is the rise of medical tourism. It means that not only should we move these protections today in the words of the motion, protecting those who are in South Australia—and this will be within the realm of the government's purview, the ministerial purview, and that of the department—but we should also look to ensure that people are not going overseas to undertake these sorts of procedures.

With those few words, I commend the honourable member for bringing this matter before our chamber, for exposing this issue, and presenting what is quite a sensible approach to it.

The Hon. K.L. VINCENT (20:35): Just to sum up, I would like to thank those who have contributed to this motion, all of whom have indicated their support, and that is very much appreciated.

The Hon. Mr Wade reminded us of some very important factors, including the fact that Australia is a signatory to the United Nations Convention on the Rights of Persons with Disabilities, and I will elaborate on that in just a moment. He also reminded us that while SACAT approval would be required explicitly for sterilisation of people with disabilities, it is not necessarily or explicitly required for growth attenuation treatment. That is something that we need to be aware of, and we will work on that.

I am pleased to hear that I seem to fit the height requirements of Mr Wade's example of women who are deemed to be too tall to be a suitable bride, such that if my ethics should ever change so drastically that I wished to become a bride, it is comforting to know that I have the option. Of course, while that is a somewhat comedic example, it is also a very important one. It shows us how our cultural values as a society and as a community can alter drastically, and I would hope very dearly that in the near future we will look upon the forced sterilisation, in particular, of people with disabilities as something to be dismissed outright in the same way that I hope we would all now dismiss outright the idea that women should be stopped from growing to a certain height in case that stops them from being desirable brides.

The Hon. Mr Wade also pointed out that the Australian Medical Association (South Australia) branch does oppose the use of this treatment where there is no medical indication, aside from the disability, and on that I would like to add a few remarks. Firstly, I would like to put on the record a couple of comments relating to Ms Charley Hooper. My office has been in contact with the mother of Charley, Ms Jenn Hooper, who has stated that she believes I have made incorrect comments regarding the hysterectomy that Charley underwent.

So, I will put on the record again that Charley did have her uterus removed but add that, based on information that I have since received from her mother, Charley showed signs of precocious puberty at the age of four and that by the time she was seven (as her mother puts it) she had a full-sized uterus in the body of a seven year old. Her mother has advised that this put her at risk, if she did menstruate, and that the removal of her uterus was for this reason. Her mother was advised that the procedure was medically necessary because of that condition.

As I have stated in my motion, as other speakers have pointed out, where there is a situation where the treatment is medically indicated, it is appropriate and should be respected. Ms Hooper has also stated that I put nothing on the record about the positive effects of oestrogen therapy for non-weight bearing children, in particular, in terms of increasing their bone strength, therefore reducing their risk of developing conditions like osteoporosis.

Her mother advises me that it was clear that Charley experienced a reduction in her pain after three days on oestrogen therapy and that she has had no seizures since; further stating that subsequent to therapy complete cessation of Charley's epilepsy occurred, which was previously manifesting in some hundreds of seizures a day. I reiterate that where the procedure is proven to have medical benefit and be medically necessary I would support that, and again I would like to make that clear.

When I introduced this motion I spoke somewhat about the cases both of Charley Hooper and Ashley X, in New Zealand and the United States of America respectively, which prompted me to have this philosophical discussion and put this motion up for debate here in South Australia so that we can prevent this from happening unnecessarily in this state. Let me make it very clear why I took this action. I was elected as a member of parliament representing Dignity for Disability, a political party established with human rights at its very foundation.

People with disabilities in this country often—too often—have had our rights, our autonomy, our agency, our ability to be seen as a person first and not just our disability, taken away from us far too often. Yes, we have had many positive strides, among them the Disability Justice Plan, the rollout of the National Disability Insurance Scheme and a decrease in the institutionalisation of people with disabilities, at least no longer occurring in the same fashion that it did quite commonly only a few decades ago.

I put this motion forward to this parliament as an example of just how far we have yet to go because still every day my office works with constituents who do not have access to basic equipment, accommodation, education, employment services or other needs met. We do not have a single accessible changing place toilet here in South Australia which may make it easier for people with conditions, such as the people we are talking about, to live their lives. Students with disability still face exclusion and bullying all too regularly but, of course, one incident of bullying is too many.

It is seen as a revolution when universal design is incorporated in any way in our planning laws, despite the fact that this very term is used in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). As I said earlier (and other speakers have as well) Australia is, of course, a signatory to this convention and further signed on to the ratified protocol. Providing access to the community, to life and to everything else people with disabilities should have access to is not about making us feel good as a society, it is our international legal obligation under the UNCRPD.

I take incredibly seriously my role in advocating on behalf of all South Australians, particularly those with disabilities, conditions, illnesses and other circumstances which may increase their susceptibility of being subjected to irreversible medical conditions or treatment before it is medically indicated, especially where they are not able to consent and their future ability to consent may not have been established. Please note very plainly that while this is not about individual cases, I do want a South Australia where it is ensured that this procedure is banned, again, where there is no clear existing medical indication.

There are many articles from the UNCRPD that support this, including respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. That is, and I reiterate the same point I made in my original speech, that it is the right of children, whether or not they are disabled, to grow up to their potential physically, emotionally and mentally. Of course, the UNCRPD also reminds us of our obligation to ensure that children with disability have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and their maturity on an equal basis with all other children and to be provided with disability and age-appropriate assistance to realise that right.

The UNCRPD also tells us that every person with a disability has a right to respect for his or her physical and mental integrity on an equal basis with all others, as, of course, the Hon. Mr Wade, in particular, in his contribution has reminded us.

Finally, touching briefly on Article 25, which pertains to health, we, of course, are reminded that we are obliged as a society and as a signatory to the UNCRPD to ensure that persons with a disability have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability, and take all appropriate measures to ensure access for persons with disabilities to health services that are gender sensitive, including health-related rehabilitation. This includes requiring health professionals to provide care of the same quality to persons with disabilities as others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities through training and the promulgation of ethical standards for public and private health care.

As you can see, all of those articles and sections that I have touched on and potentially some more within the UNCRPD make crystal clear points about the rights of people with disabilities, but it is important to remember also that these are not simply statements. The UNCRPD and any other United Nations' convention for that matter does not achieve rights in and of itself. Members will recall that when I introduced this motion I raised my concerns about a response I had received from the Minister for Health stating his belief that existing measures like SACAT and the UNCRPD provided adequate protection for people with disabilities against this treatment without medical indication. That is me paraphrasing and I hope I have not misquoted the minister.

My point is that the document, the UNCRPD, is just that and it is incumbent on all of us and we are all obliged to make sure that we use that document as guiding principles—guiding principles for actions that must be taken because these rights are not met and these obligations are not met simply by our becoming a signatory. The work is only beginning. There is action that must be taken, so if we do not keep the UNCRPD and all other relevant human rights documents at the front of our minds at all times and actively discuss them through public discourse on a regular basis, we may well see our rights eroded. It is not without constant surveillance and discussion that we maintain our rights.

With those words, I commend the motion to the chamber, and again make it clear that what I am seeking here is not a personal attack on any one person or family, but a discussion about how we as a parliament and a society maintain our international obligations.

Motion carried.