Action - Explore the bodily integrity framework

The action outlined below will help achieve this outcome. This work was started under the existing Disability Action Plan.   

7. Priority: Reduce barriers to disabled people making decisions to determine their own lives

7 B: Explore the framework that protects the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures, including the issue of consent. This action will focus initially on options to protect against non-therapeutic sterilisation without the fully informed consent of the individual.

On this page

Progress update

Scope of action

1. Context: brief background, what is this action intended to achieve?
2. Proposed scope
3. Timeframes for completion
4. What resources will the lead and partners contribute?
5. Contributors/partners with lead – who is involved in this action?
6. Reporting – key milestones/deliverables
7. Risks
8. Impact – what are we trying to achieve?
9. Evidence base
10. Related work

Progress update to September 2018

Status: Minor risks to achieving milestones- Orange

• This project has experienced significant delays due to on-going resourcing issues, competing work priorities, and the change of government.

• Two new staff members are now in place to progress the work.

• Membership of the Project Reference Group is being finalised.

• The first meeting with the Project Reference Group is on 11 July 2018.

• The work is likely to focus on non-therapeutic sterilisation, with the scope of the work will be agreed with the Project Reference Group at the first meeting.  A reviewed or revised scope and revised schedule will be developed once the scope review is complete.

   

Action Milestones:

Revised scope to be approved

• The scope was originally agreed by DPOs and approved at the 10 June 2016 meeting of the Chief Executives’ Group on Disability Issues and Disabled People’s Organisations.

• Given delays to starting the project the scope and focus of the work will be reviewed and agreed with the Project Reference Group, prior to confirmation being sought from DPOs at the next available opportunity.

   

Reference group Terms of Reference drafted and agreed and reference group set up (end June 2016) [request to be delayed until the new scope and schedule is approved]

Reference group almost set up and first meeting has been scheduled

• An initial Terms of Reference has been drafted.
• The drafted Terms of Reference will be discussed and confirmed at the first meeting of the Project Reference Group which is scheduled for 11 July 2018.
• Membership for the reference group is being finalised.

Test working definitions of key concepts for the project with the reference group (end July 2016)  [To be tested with the reference group in July 2018]

• Having a shared understanding of key concepts underpinning bodily integrity, non-therapeutic medical procedures and consent is critical to the focus and success of the project.
• Testing working definitions will be on the agenda for the Project Reference Group to discuss at their first meeting in July 2018.

Develop a background paper (end October 2016)  [Draft paper is being developed which will be shared once complete]

• The scope and time frames for the paper will be tested at the first Project Reference Group meeting on 11 July 2018.

• The paper is expected to outline the components of, and analyses the effectiveness of, the existing legislative and medico ethical framework (including issues of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures.

• In preparing for the work, the Ministry of Health has drafted project information sheets, completed an initial problem definition, undertaken a data exercise to assess the availability of sterilisation data, commissioned a literature review and is undertaking a stakeholder analysis.

   

Develop and analyse options  [Time frame and scope to be confirmed following the first reference group meeting.]

• The project will consider options to protect against non-therapeutic sterilisation without the fully informed consent of the individual, with the objective of identifying a preferred option.
• The time frames will be informed by the first Project Reference Group meeting.

Report with advice on options to the Associate Minister of Health and the Minister of Justice [timeframe and scope to be confirmed following the first reference group meeting]

• The scope and time frames for the report will be discussed and tested at the first reference group meeting on 11 July 2018. It is however anticipated that advice will be provided by the end of 2018.

Lead: Ministry of Health

Others involved: Ministry of Justice

DPOs contact: People First

Scope of action

1  Context: brief background, what is this action intended to achieve?

For many years, disability organisations and advocates have been aware of non-therapeutic sterilisations of disabled children and adults and other compromises of bodily integrity being undertaken without the consent of the person undergoing the procedure. There is anecdotal evidence of disabled people being brought to New Zealand to undergo sterilisation procedures that would not be approved within their own country’s legal and ethical frameworks.

How widespread non-therapeutic sterilisation, without consent, is in New Zealand is difficult to determine. There is no reliable, routinely collated data on the numbers of non-therapeutic sterilisations of children and adults, as such information is recorded only in individuals’ personal medical files.

The legal and ethical framework for consent for people with disability undergoing medical procedures is complex, and, there are concerns that it is out of step with articles 12, 16, and 17 of the UNCRPD.

We understand that medical ethical approval is not required to undertake non-therapeutic sterilisations of children and adults.

For adults (over 18) the Protection of Personal and Property rights Act (known as the 3PR Act) is used to seek family court intervention for non-therapeutic sterilisations of children and adults without consent. There are concerns relating to the operation of the Act, including assessment of competency, lawyers acting on behalf of people without meeting them, and a lack of reporting on the Act’s use. The Courts are operating within the wider societal context of, and may share, a low level of understanding of the rights of disabled people under the UNCRPD.

In New Zealand there is no oversight by the courts of sterilisation without personal consent of learning/intellectually disabled people under the age of 18. The Care of the Child Act gives parents (or guardians) the right and duty to act in their children’s best interests. There has been little debate in New Zealand about the rights of disabled children and whose rights are paramount when there are competing rights or the best interests of the child are in dispute.

The United Nations Committee on the Rights of Persons with Disabilities concluding observations noted its concerns that parents may give consent for the sterilisation of their disabled children and that courts may make orders that adults undergo sterilisation without the individual’s consent. The Committee recommended that the New Zealand government enact legislation prohibiting the use of sterilisation of boys and girls with disabilities, and of adults with disabilities, in the absence of their prior, fully informed and free consent.

The project will explore the existing framework to protect children and adults with disabilities against medical procedures that are non-therapeutic and to which they have not consented, focusing initially on options to protect against non-therapeutic sterilisation.

This is a new action.

2  Proposed scope

The project will identify the components of, and analyse the effectiveness of, the existing legislative and medico-ethical framework (including the issue of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures.

The deliverable (under the 2015 DAP) is advice to Ministers on options to protect against non-therapeutic sterilisation without the fully informed consent of the individual.

The scope includes:

• reaching a working definition for non-therapeutic medical procedures and non-therapeutic sterilisation for the purposes of this project
• reaching a working definition for bodily integrity for the purposes of this project
• identifying the components of, and analysing the effectiveness of, the existing legislative and medico ethical framework (including issues of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures, as per the working definitions arrived at (4.2.1)
• identifying and analysing options to protect against non-therapeutic sterilisation without the fully informed consent of the individual. Options in addition to changes to the legislative and medico-ethical framework are within scope.
• advising Ministers on the options.

The scope of this current DAP project excludes:

• Considering the wider issues of disabled people’s choice, control, and autonomy (including consent issues) outside of the area of non-therapeutic medical procedures.
• Implementing options identified within this project.

3  Timeframes for completion

Report with advice on options to the Associate Minister of Health and the Minister of Justice by the end of June 2017.

4  What resources will the lead and partners contribute?

The project will be structured as follows:

• Establishment phase: in this phase of the project (before the reference group is established), People First New Zealand Inc. – Ngā Tāngata Tuatahi will co-ordinate gaining input from disabled people. The process for gaining input from DPOs, in addition to those on the reference group, throughout the project will be decided in consultation with the DPOs.
• Project working group – as project lead the Ministry of Health will project manage, draft background paper, draft options and analysis, and develop advice to Ministers on the options, calling on expertise of Disabled People’s Organisations (DPOs) and subject specialists as required. Ministry of Health will provide 0.5 EFT senior policy analyst to lead the project. Ministry of Justice to provide legal expertise in analysing existing frameworks and proposed options and reviewing project documents.
• Project reference group will inform, influence, and guide the project. The reference group will advise on: clarifying the existing legal and ethical framework; identifying, developing and analysing options; and assist with disseminating draft options amongst their groups and networks for testing and feedback. Membership will include expertise from DPOs, Parent to Parent, and on New Zealand’s legislative and medico-ethical framework relating to disabled people’s choice and control in undergoing medical procedures. Ministry of Justice will attend reference group meetings.
• Project Governance - existing governance structures in Ministry of Health and Ministry of Justice will be used, and decisions directed to the Disability Action Plan governance: DPOs Group, Senior Officials Group, and the Chief Executives’ Group on Disability Issues.
• Ministry of Health will cover costs for the reference group meetings, including reasonable accommodations for accessibility, venue hire, and travel as needed.

5  Contributors/partners with lead – who is involved in this action?

Ministry of Health lead with Ministry of Justice support in analysis, drafting, and reviewing.

The terms of reference and membership for the project Reference Group is to be confirmed. Membership will include nominees from DPOs and Parent to Parent.

Ministry of Health, Ministry of Justice, and People First New Zealand Inc. – Ngā Tāngata Tuatahi have been involved in drafting this scope.

Ministry of Health, Ministry of Justice and DPOs (with initial co-ordination by People First New Zealand Inc. – Ngā Tāngata Tuatahi), will be directly involved in implementing this action. Wider involvement from Parent to Parent, and subject experts will be gained through the Project Reference Group.

6  Reporting – key milestones/deliverables

The lead agency is responsible for reporting every three months to the Office for Disability Issues, as requested, on progress against milestones listed in this section.

• reference group Terms of Reference drafted and agreed and reference group set up by end June
• test working definitions of key concepts for the project with the reference group by end July
• develop a background paper that outlines the components of and analyses the effectiveness of the existing legislative and medico ethical framework (including issues of consent) in protecting the bodily integrity of disabled children and disabled adults against non-therapeutic medical procedures, by end October 2016
• develop and analyse options to protect against non-therapeutic sterilisation without the fully informed consent of the individual, with the objective of identifying a preferred option by end March 2017
• Report with advice on options to the Associate Minister of Health and the Minister of Justice by end of June 2017.

7  Risks

What are the risks to progressing this action, and what mitigations will be put in place against those risks?

8  Impact – what are we trying to achieve?

Outcome is development of high quality advice for Ministers on an approach to protect against non-therapeutic sterilisation of disabled people without the fully informed consent of the individual.

Success will be evaluated through Minister’s feedback on the advice received.

9  Evidence base

There is anecdotal report of instances of non-therapeutic sterilisation occurring in New Zealand, and at least one confirmed instance of a New Zealand child undergoing Ashley Treatment in a foreign jurisdiction. The lack of reporting on non-therapeutic sterilisation of people with disability is a concern in itself. Initial information on the New Zealand legislative and medico ethical framework shows it to fall short of UNCRPD requirements in protecting rights of disabled people.

10  Related work

• DAP 7a) Ensure disabled people can exercise their legal capacity, including through recognition of supported decision making. Lead: Office for Disability Issues
• DAP 9c) Increase access to health services and improve health outcomes for disabled people with a specific focus on people with learning/intellectual disabilities. Lead: Ministry of Health.
• DAP 9d) Explore how the Mental health (Compulsory Assessment and Treatment) Act 1992 relates to the New Zealand bill of Rights Act 1990 and the CRPD. Lead: Ministry of Health with Ministry of Justice support.