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About Thriving Madly
Thriving Madly is a charitable trust that aims to journey as and alongside Mad, Divergent and Neurodivergent people, families and communities to improve our status as citizens of Aotearoa New Zealand. Our focus is community transformation through connection.
We share our unique worldviews, wisdom, skills and creativity, to provide opportunities for the community to understand us and our experiences better. We also aim to increase connections and participation opportunities within the community by growing spaces that are comfortable, accessible, and welcoming of our diversity.
There are many ways that people who have a lived experience of mental distress can identify. Thriving Madly uses the identity of Mad as a way of honouring the people who have been involved in the Mad Movement, both here in Aotearoa and internationally. This movement brought about changes to how people who are identified as experiencing ‘mental illness’ have been treated within our community and also within the services contracted to ‘care’ for them, many of which we have benefited from.
We have been involved in the discussion on Mental Health Act repeal and replace since the start
Many Thriving Madly community members have personal experience of being subject to the current Mental Health Act. Many of us have also had our experiences shaped by the existence of compulsory treatment and coercion in Aotearoa even though we have never been subject to the Act. The most profound ways that these have shaped our experiences are through fear and lack of trust, in the services that exist to support us, and in relation to our own navigation of big distress.
We would like the select committee to be aware of our previous submission to the discussion document ‘Transforming Our Mental Health Law’ which is available here:
Particularly, we want to note that advice to create ‘staunchly values based’ legislation has not been implemented in the draft legislation and there remain opportunities to embed values alongside principles for all processes and proceedings in the legislation.
Staunchly values-based
Māori values and concepts underpin the law and how it is applied, and are woven meaningfully throughout. Values with particular resonance for our community include:
o mana, mauri, tikanga, and tino rangatiratanga
o kaitiakitanga, kotahitanga, wairuatanga, whanaungatanga, ōritetanga
Legislation and processes are based on values that are:
o Clear and explicit
o shared by all involved
o measurable, so we can all be accountable to them
The principles established in Te Tiriti o Waitangi give birth to both the legislation and the system in which it operates
Other advice we would like to reiterate from this submission includes that the legislation must ensure:
Congruence with New Zealand meeting its obligations under international human rights treaties such as UNCRPD
Power and responsibility are shared, not invested solely in health professional hierarchies
Capacity is acknowledged as being on an individualised spectrum, rather than a binary yes/no equation
All assessments, and any consequences as an outcome, are expected to be fluid and flexible enough to allow for decision-making capacity in part or in full to return to people experiencing distress at any stage of the process
Restoring self-determination and autonomy (in the context of relationships important to the individual) is a fundamental purpose of the legislation and how it is applied
o Self-determination is not just applied in the context of
decision-making but also throughout an individual’s experience with the legislation, e.g. how our experiences are understood and how the story about us is told and recorded
Hospital settings are no longer regarded as acceptable spaces for support and care of those experiencing mental distress, given
the new legislation’s purpose in supporting people to heal
the legislation and related services understanding that relationships are the primary force in healing
the knowledge that any space in which a distressed person is being cared for needs to be one that fully supports the healing power of relationships, in its resourcing, processes, physical and emotional environment
Staff listen to and acknowledge what the individual has to say about their experiences and what works for them – “You are the expert on you”
o People remain the authority and author of their experience:
▪ They wrote the story so far, and they will write it into the future
▪ They also have the primary definition of this present moment
There is careful consideration of language and terminology
o Reflects the population/s served
o Is reviewed regularly
o Language used to define unusual or distressing experiences, and the purpose of care, focuses on relational context and desired relational outcomes
▪ Frameworks such as The Power Threat Meaning Framework are preferred for defining and discussing these experiences, as opposed to the current language of “illness”, “disorder” and a focus on what is wrong with the individual, at the expense of their context
We would like the Select Committee to read and take note of this from the World Health Organization and the Office of the High Commissioner on Human Rights:
“The international human rights framework requires countries to revisit legislation on mental health from a rights-based perspective. Any new direction must entail a break from the past in the biomedical model of mental health and the use of compulsory powers. This process of transition is likely to be complex; however moving towards new ways to understand, promote and support mental health and well-being is essential and requires a fundamental shift in mental health policy and service transformation.”
Recommendations
Tiriti o Waitangi
Redraft the legislation to ensure processes enable equity for Māori
In part 5, Te Tiriti o Waitangi, the following clauses must be added:
Supporting tino rangatiratanga and recognising Māori self-determination
Improving equity for Māori and all people
Actively protecting Māori mātauranga
Providing options that are created by and for iwi, hapū and whānau
Working in partnership with Māori
There is no place for substitute decision making
Make it explicit that the existence of psychosocial disability (mental distress) does not justify a deprivation of liberty as stated in article 14 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)
Remove all processes within the legislation that would enable substitute decision making
Clearly outline the requirements for supported decision making during each process within the legislation
Provide clarity around the interactions between decision making supports - compulsory care plans, nominated persons, hui whaiora and independent support people
Strengthen and clarify language used throughout the legislation to specifically reference substitute decision making and supported decision making, including a human rights-based definition of these terms in the interpretations section
Amend the meaning of capacity - which MUST NOT require capacity to be on a sustained basis
Amend the meaning of seriously impaired mental health - which MUST NOT include ‘of an intermittent nature’
Amend the meaning of serious adverse effects - which MUST NOT include serious psychological harm to others
Remove Section 9 (b) which allows for the disregard of brief or intermittent capacity
Remove Section 47 - Emergency Care
Add clear, mandatory safeguards and measures to ensure that supported decision making arrangements respect the rights, will and preferences of people
Impose a duty on the responsible clinician (or other named role in the care team) to facilitate access to an independent support person and independent advocate (this is currently missing)
Impose a duty on mental health services to recognise and respect the agreements and arrangements of supported decision-making
Ensure free and informed consent for medical or scientific experimentation provided through supported decision making shall be subjected to appropriate safeguards to ensure the respect of the persons rights, will and preferences
Compulsory care principles
Rewrite the compulsory care principles as advised
New roles to ensure rights
Consider specifying that independent support person roles are peer support roles
Ensure independent support person and advocate roles sit outside of Health New Zealand. Another entity MUST be identified to be a truly independent ‘home’ for these new roles.
Amend the independent support person process to be an ‘opt-out’ process rather than an ‘opt-in’ process for anyone who has impaired decision-making capacity (subject to the act AND voluntary where impaired decision-making capacity exists)
Add processes for situations where the provided independent support person or advocate is not acceptable to the person
Add processes for situations where the independent support person is / would be the only person in a tangata whaiora’s ‘support network’ and they opt out
There needs to be a named person with clear duty and accountability to facilitate a person’s connection to their advocate
Clarity is needed to ensure people access an independent support person or advocate as soon as possible
The reporting function advocates have to the Director must be protected through the legislation development process, and be a key source of information for the five-yearly review process.
New mechanisms before becoming unwell
Implementation must ensure there is clear information about how to create a valid care directive, IT systems must support the storage and access to a person’s care directive
Task Te Whatu Ora with funding the awareness and development mechanisms for Care Directives
People must be aware of their ability to develop a care directive and resourced to do so with support from people they trust or in community-based settings such as at workshops run regularly in places like community centres, marae or through general practices
Direct Te Whatu Ora to establish a new care directive fund to enable people who are being seen in primary care equitable access to care directives
Suggested new clause - Section 13 (5) - Tāngata whaiora who are currently accessing specialist mental health services must be informed by the service of care directives
Information should be gathered and reported nationally to ascertain whether care directives are being utilised by all population groups equitably
Decisions about interventions must uphold an individual's views expressed in their care directive about what is best for them.
Support for the development of a compulsory care plan must not be limited to mental health professionals
Amend clause 14 (2) align with the process of witnesses when making a will
Redraft legislation so that processes reflect that there must be no situation in which a care directive can be overridden by a clinician
New participation duty
Redraft legislation to ensure participation processes are part of a supported decision-making regime that upholds rights, will and preferences, and does not enable substitute decision-making
Subpart 2 - participation in decision-making must be reconceived as support for decision-making
Retain named persons and strong obligations in the redrafting of this section
Family and whānau involvement
Secondary legislation, guidelines and implementation work needs to uphold the rights of people to decide who they want involved in their care and how
Redrafting of the legislation must ensure that there is no substitute decision making by whanau or family enabled
Strengthened rights
Ensure that rights include people who have a welfare guardian under the PPPR act
Rights must be aligned with the new processes and proceedings outlined in the Bill to provide clarity and to truly strengthen rights
Additional rights need to be added for people who have decision-making capacity
An additional section of rights must be added, specific to people who are experiencing impaired decision-making capacity (whether or not they are subject to the act or in an inpatient unit voluntarily)
Additional rights to restorative processes are needed for people during their time subject to the act (as tangata whaiora), or in a inpatient mental health facility, and following these experiences
Rights must enable people to access independent physical health advice
people should have the right to consult more than one mental health practitioner of their choice to get additional opinions
Rights must not allow for substitute decision making
To embed a rights-focussed framework, in court processes, judges must be directed to consider both the “condition” of the person (in relation to the compulsory care criteria) and the rights status of the person
Judges must also be required to consider if decision-making supports can be strengthened for the person and direct clinicians to implement additional decision-making supports.
Section 39 needs to be strengthened as advised
Tighter controls on practises and treatments
The Select Committee should visit seclusion rooms and sensory spaces to gain an understanding of what these experiences could be like for someone experiencing an acute level of extreme distress
Clearer statutory processes
The legislation should not allow for community care orders and instead create opportunities for home-based crisis support, more access to crisis respite, and strong obligations on services to provide holistic support for people leaving hospital or released from the Act
Care based on cultural needs
The Act should provide the impetus for all mental health professionals to be supported in their own learning journeys around te Tiriti o Waitangi
Culture must be understood broadly to capture not only a person’s ethnicity, but also the impact and significance of factors such as disability status, spiritual or religious beliefs, and identities a person may hold
all references to respect for religious beliefs must be extended to include spiritual beliefs
This Bill must accommodate that what may be perceived as mental illness through a biomedical lens may be understood and supported differently depending on the identities and beliefs held by an individual
Expertise to meet peoples needs - roopū whaiora
Cultural and lived experience experts who are part of a rōpū whaiora must be taken as seriously as registered health professionals
any guidelines developed for roopu whaiora must attend to language, and the need for person-centred non-pathologising language in these spaces
We would like to see people part of a person’s rōpū whaiora committed to returning power to the person who has been subject to the Act
Administrative roles
Clear accountability is needed for what happens when duties and obligations are not upheld
Public transparency when an appointment is suspended or removed from office for both DAMHS and District Inspectors and Official Visitor roles
Summaries of the monthly reports produced by District Inspectors and Official Visitors to the Director should also be available and easily accessible for tāngata whaiora and whānau
Section 153 (4) and (5) must also allow for a District Inspector or Official Visitor to be accompanied by interpreters or translators
Explore the possibility of requiring more than one Review Tribunal member to have lived experience of being subject to compulsory mental health care
Co-option of suitable persons should be a requirement due to the nature of compulsory intervention and not require a request from the person
Data on convenors elected should be gathered at a national level to ensure equity
Ensure processes mean that section 180 does not result in the compulsion of any person who no longer meets the compulsory care criteria
The person must be able to have their nominated person, independent support person or advocate with them during processes outlined in sections 180 and 181.
Section 184 (3) and Section 200 (3) must require a copy of the record to be given to the Director as well, to ensure national-level data collation
Ill-treatment and neglect should not have to be ‘intentional’ in order for it to be considered an offence
General policy statement
This Bill repeals and replaces the Mental Health (Compulsory Assessment and Treatment) Act 1992 (the Mental Health Act). The policy objectives of the Bill are to create a modern legislative framework for compulsory mental health care that—
shifts compulsory mental health care towards an approach based on people’s rights and recovery:
enables responsive, needs-based care, including culturally appropriate care, that addresses the need for compulsory care:
supports the safety of individuals and others:
supports people to make decisions about their mental health care and ensures that those who have decision-making capacity are not compelled to receive mental health care:
minimises the use and duration of compulsory care, including minimising the need for people to re-enter compulsory care:
includes effective safeguards and mechanisms to monitor the use and operation of legislation and ensure that human rights are respected.
Our updated mental health legislation must reflect modern approaches to human rights, supported decision-making and informed consent. We welcome the changes being made to the Mental Health Act, and after reading the general policy statement from the bill (above), we believe the Bill does not go far enough to meet the policy objectives stated. We, the contributors of Thriving Madly, believe this is not transformative. We want to be explicitly clear:
The Bill needs to go further to uphold rights.
The Bill needs to be strengthened in its capacity-based approach to recognise and respond to fluctuating decision making capacity.
The Bill needs to go further to embed supported decision making.
The Convention on the Rights of Persons with Disabilities calls for
a shift away from substituted decision-making and coercion, towards equality and non-discrimination, supported decision-making, free and informed consent, effective and meaningful participation, and community inclusion. We encourage the Select Committee to think carefully about the Bill and the important role it holds in promoting and upholding human rights.
There is no place for substitute decision making in the new legislation
We would like to see:
- Remove all processes within the legislation that would enable substitute decision making
- Clearly outline the requirements for supported decision making during each process within the legislation
- Provide clarity around the interactions between decision making supports - compulsory care plans, nominated persons, hui whaiora and independent support people
- Strengthen and clarify language used throughout the legislation to specifically reference substitute decision making and supported decision making, including a human rights-based definition of these terms in the interpretations section
Substitute decision-making is when legal capacity is removed from a person, when a
substitute decision-maker is appointed to make decisions on behalf of a person or when decisions are made by another person based on what is believed to be in the “best interests” of someone else as opposed to being based on the person’s own will and preferences (https://iris.who.int/bitstream/handle/10665/373126/9789240080737-eng.pdf?sequence=1).
Supported decision-making is the provision of various support options which allow a person to exercise legal capacity and make decisions about themselves with support. Supported decision making means legal capacity is never removed or restricted; a supporter cannot be appointed by a third party against the will of the person concerned and that support must be provided based on the will and preferences of the individual (https://iris.who.int/bitstream/handle/10665/373126/9789240080737-eng.pdf?sequence=1)
It’s 2024. We may have accepted substituted decision-making back in 1992 when the current act was enacted, but we know better now and must do better. The World Health Organisation and the Office of the High Commissioner on Human Rights state that under Article 12 of the Convention on the Rights of Persons with Disabilities, States Parties have an obligation to repeal legal provisions that authorize substitute decision-making and make supported decision-making available for persons with mental health conditions and psychosocial disabilities or, in general, for any adult who may want access to support for exercising their legal capacity. They also note that all people using mental health services, including persons with psychosocial, intellectual and developmental disabilities, must have the right to make decisions themselves about their health and medical treatment, and to have those decisions recognized as valid under the law and that recognising legal capacity and supported decision-making is a precondition to exercise the right to health and related rights
Supported decision-making regimes can take many forms, we encourage those with the power to think creatively about the ways to realise human rights in Aotearoa, to take a stand and legislate accordingly. Key to this is giving genuine effect to decision-making support processes, by ensuring that supported decision-making cannot be overruled by substitute decision-making processes. The capacity assessment and decision-making support additions to the legislation do not go far enough to protect and safeguard a person whose decision-making capacity is affected. There must be the addition of a separate section explaining the requirement for supported decision-making to clinicians, making it explicitly clear that the existence of psychosocial disability (mental distress) does not justify a deprivation of liberty as stated in article 14 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Legislation must safeguard a person’s will and preferences and also respect the capacity of children and the way this changes as they get older.
In order to centre supported decision making in the new legislation, significant changes are needed including:
Amending the meaning of capacity - which MUST NOT require capacity to be on a sustained basis
Amending the meaning of seriously impaired mental health - which MUST NOT include ‘of an intermittent nature’ and the meaning of serious adverse effects - which MUST NOT include serious psychological harm to others
Removal of Section 47 - Emergency Care
Addition of clear, mandatory safeguards and measures to ensure that supported decision making arrangements respect the rights, will and preferences of people
Impose a duty on the responsible clinician (or other named role in the care team) to facilitate access to an independent support person and independent advocate (this is currently missing)
A duty on mental health services to recognise and respect the agreements and arrangements of supported decision-making
Free and informed consent for medical or scientific experimentation provided through supported decision making shall be subjected to appropriate safeguards to ensure the respect of the persons rights, will and preferences
Part 1, clause 3 (a) needs to say: “Promotes and upholds supported decision-making for tāngata whaiora
Principles underpinning the legislation
To align with the stated policy objectives, and the hopes of our community the compulsory care principles must be rewritten. The principles are insufficient, unclear, and do not address some of the core experiences of harm, marginalisation, othering and discrimination faced by those of us who have experienced being under the act.
The principles must centre:
upholding and honouring peoples rights and agency
ascertaining a person’s will and preferences
recognising and responding to fluctuating decision making capacity, and
providing decision making supports to anyone who has impaired decision making capacity, whether or not they are in agreement with the care team / psychiatrist
Some details in the proposed principles as they are currently written actively undermine a rights and recovery based approach.
“How can you heal alongside someone who can take your rights away from you? You need to be able to honour your truth”
“We need to be seen as a human - not a patient or a client or whatever ‘This is a human who is suffering, in front of me’”
“I have had the experience of being in a mental hospital (not voluntary) as a teen, and I was put in seclusion for a few days. I think looking back the biggest thing I want policy makers to understand is how scary it was, and traumatising. I was contained, it was not helpful in any way. I was not a risk to myself or others but was certainly very unwell and out of my mind, however I think there could have been many other options for my care.
I was very lucky to have parents who took me out of the hospital after two weeks of treatment and weaned me off multiple drugs, and cared for me at home otherwise I may have spent many years there.
I think just because mentally I was unwell I still have rights and I was not asked what I wanted to be consulted in any way. When you enter hospital you should still be treated as a fully functional human and person centred respect should still exist. I think over and over professionals underestimate our capacity to know what we need. I am my expert and I should always be referred to and consulted and given choices.”
“In western psychiatry the system has pendulumed from a therapeutic approach to a custodial approach and back over years - “care” is going to be understood this way by the system and policy makers and we need to make sure that this isn’t the case… Therapeutic care (not custodial care) is what’s needed - “Holistic, therapeutic care” needs to be the language, not just ‘care’”
“We need to reframe risk and have everything in a clinical setting to be a therapeutic tool - in a patient directed way”
A question posed in our hui: “What is therapeutic? Is there really much therapeutic care available in the system at the moment? What would be examples of this??”
An answer suggested: “Trauma informed and recovery focussed care - decentring the medical model”
“Therapeutic purpose” - the problems with this principle are as follows:
It sets out that compulsory care needs to be ‘therapeutic’ in its intention but not in its application - therapeutic application of care from a lived experience perspective, specifically the perspective of the person receiving care, is what matters - it is important that care is experienced as therapeutic not custodial or punitive - the intentions matter less than our experiences
“Therapeutic purpose” encourages a paternalistic approach that we do not support, whereas the wording of ‘therapeutic application’ may enhance our participation in determining what is therapeutic for us
If the focus remains on ‘therapeutic purpose’, power imbalances between tāngata whaiora (and our whānau) and clinicians will be entrenched. This is because clinicians will hold the power to determine that we are ‘unwell’ and what ‘improved mental health’ looks like and what is required to achieve this
Enabling compulsory care for ‘protecting, promoting and improving a person’s mental health’ is far too broad. Compulsion should never be used to promote or protect mental health; this implies that preventative forced treatment (e.g. long term applications of Community Care Orders) are justified under the new legislation when they absolutely must not be.
A ‘promotion, protection and improvement’ approach to compulsory care is necessarily at odds with the compulsory care criteria - both the decision making capacity criteria and the current / immediate harm criteria, which indicate that a person should be able make their own decisions about care and mental health any time that they are not of impaired decision making capacity and (imminently) experiencing harm
If the purpose of compulsory care is framed as ‘promotion, protection and improvement of mental health’ then the purpose is not the restoration of decision making capacity. This is deeply problematic as it may enable provision of care deemed ‘therapeutic’ by clinicians which further impairs a person's decision making capacity e.g. by restricting communication skills or consciousness. Any compulsory care should be provided with a primary aim being the restoration of decision making capacity, so that a person can participate in and lead the processes to improve their own mental health in line with their will and preferences, as soon as possible
“Least restrictive application” - the problems with this principle are as follows:
Within our community, some of us value a least restrictive approach (e.g. compulsory medication but whilst discharged from hospital and living at home), and others value a least invasive approach (e.g. detention in a hospital facility, but not being forced to take medication or have ECT)
Naming only “least restrictive application” (without acknowledging the potential preference for least invasive application) does not recognise or allow opportunity for a person’s preferences when it comes to their own care
These values can be culturally-based, so reflecting both is necessary for culturally appropriate and culturally responsive care
The preference for voluntary care and limitations to voluntary care (b) (i) are very unclear and do not make sense in the context of the new compulsory care criteria. New legislation must address our experiences of coercion and manipulation under the current MH (CAT) Act (1993) where we are told ‘you can agree to this voluntarily, or else we will put you under the act and force you’. This accepted coercion has been incredibly damaging to some of us, and there is real risk this could continue without an approach that recognises fluctuating capacity and centres supported decision-making .
Genuinely legislating for and implementing decision-making supports must recognise fluctuating capacity; maximising capacity through a range of decision making supports; and eliminating the ‘voluntary’ / ‘compulsory’ dichotomy that exists in the current provision of mental health care, where we are given a choice but must choose the care a clinician wants for us or have that choice removed from us
“Supportive and restorative application” - the problems with this principle are as follows:
A range of considerations are combined under this principle;rights and self determination, support for decision making, supportive care provision, responsive and individualised care provision are distinct issues that have been conflated. This principle is confusing and there is a risk that the nuance necessary is lost and respect for each of these issues in the implementation
All of these are listed as things that compulsory care “should” do, placing them on equal footing, however this is not right. Under a rights and recovery approach a person’s expressed will MUST be upheld and preferences MUST be upheld where possible in the provision of mental health care
There is no mention of decision-making supports, only that a person should be encouraged to develop and exercise capacity. Given the central role decision-making supports must have in the new legislation, this MUST be named in the principles
An important aspect of responsive care, from the perspective of Thriving Madly, is access to restorative processes. Although this would be legislated for in the Bill (Hui Whaiora, complaints processes, etc) it is not mentioned here and must be
This principle would be best separated into two:
Rights and agency enhancing purpose, and:
Individualised and responsive application
The compulsory care principles must be rewritten:
The compulsory care principles MUST be rewritten to address the problems above, address equity issues and address the power imbalance that exists between clinicians and people.
In addition to clarifying the existing principles, we advocate two additional principles:
Doubly-binding purpose
Equity imperative
“Doubly-binding purpose”
Currently, there is huge stigma, shame and powerlessness in being under the act for many of us who have been subject to the legislation. There is also immense fear of coming under the act for those of us who struggle with distress which can make us feel unsafe talking about what is really happening for us.
“I didn’t come out about multiplicity until it was impossible to be put in hospital”
“I haven’t personally experienced being under the act, but its existence has shaped my experience of distress and using services… I have always been very scared of the act, it’s made me avoid seeking support and avoid sharing what was really going on for me”
“We all have experienced a lot of fear”
Additionally, under the current Mental Health (Compulsory Assessment and Treatment) Act (1993), there has been a lack of focus and action on accountability i.e. the responsibility that clinicians have to tāngata whaiora. We are pleased to see the new legislation aims to make accountability more central and practicable..
To address both these issues, we strongly advocate that a key principle for compulsory care under the new legislation be a “doubly-binding purpose”. Through this principle, the status of being ‘under the act’ or ‘subject to the act’ would no longer just apply to tāngata whaiora in a way that feels othering and diminishing. Responsible clinicians and the rōpū whaiora (care team) would also be ‘subject to the act’ whenever providing compulsory care to a person. As a result, we envisage that being ‘subject to the act’ will:
Have more neutral and less stigmatising connotations
No longer imply that the current level of power imbalance should exist between people and staff
Support collaborative work and shared goals between tāngata whaiora and clinicians
Be something that clinicians aim to minimise for themselves and the people that they are providing care to
Encourage clinicians to see themselves as also being bound by strong requirements outlined in the legislation
Support clinicians to understand the gravity of being ‘subject to the act’, thereby contributing to epistemic justice
Where differentiation is needed, people receiving compulsory care could be referred to as ‘subject to the act (as tāngata whaiora)’ and people working in a rōpū whaiora could be referred to as ‘subject to the act (as clinicians)’. To address the stigma, power imbalance, epistemic injustice and need for strong accountability noted above, this language should permeate the Bill and all subsequent legislation, including secondary legislation, guidelines, requirements, training and development.
If it seems like a ridiculous or impossible thing, to have legislation that makes both us as inpatients and the staff treating us ‘subject to the act’ consider why… is it because the idea of being under the act is horrible, and we wouldn’t want anyone to experience it? (why then should we experience it?) Is it because mad folks need to be singled out and treated differently and given a range of labels to highlight our differences and minimise our humanity? And that the normalness and humanity of staff needs to be preserved and emphasised in the context of our labelling and dehumanising?
This is a pragmatic suggestion to highlight the requirements placed on everyone subject to the act, regardless of who they are and what is required of them. It is also ideological, in that we seek to reduce the distance between tāngata whaiora and staff, recognise each others humanity, develop an understanding of the gravity of situations whereby some of us (tangata whaiora) are required to accept compulsory care and others (clinicians) are required to do everything possible to uphold rights, ascertain will and preferences and support decision making
“Equity imperative”
The compulsory care principles need to recognise te Tiriti o Waitangi, including equitable care. It is also important to understand the ways that intersecting disadvantages and marginalisation impact many of us, and encourage action around some of the areas where tāngata whaiora experience the greatest inequities - income and physical health.
“How can Equally Well fit into this? Equity is what we’re wanting - is there room for an equity champion within the mental health act?”
It is also crucial that the legislation treats everyone with impacted decision-making equitably - regardless of whether we agree or disagree with the care that the psychiatrist / rōpū whaiora want for us. If we have impaired decision-making capacity, we should have access to decision-making supports, even if it seems that we are in agreement with the care plan - because we cannot genuinely give informed consent if we do not have support for those decisions.
“My worry is, what about the people who are agreeing to the care? Will they miss out because they are ‘voluntary’? There’s an unspoken thing, that the compulsory care is there for when people don’t agree or consent, when they refuse care, but what about people who agree to care, but don’t have decision making capacity? What are the safeguards? How do we make sure they get the decision making supports needed to be making those decisions in an informed way?”
The Compulsory Care Principles must be rewritten:
6 Compulsory Care Principles
For the purpose of this act, the compulsory care principles are as follows:
Doubly-binding purpose
whenever a person is subject to compulsory care, the team providing care (rōpū whaiora) is also subject compulsion, in that -
(i) the person is compelled to accept care for the duration of the time that they meet the compulsory care criteria (section 7)
(ii) the rōpū whaiora is compelled to meet their duties and obligations, including to implement the persons advance care plan; maximise the development and exercise of capacity and choice; provide decision-making supports to this end; and engage in collaborative and restorative processes (e.g. hui whaiora)
(iii) while the requirements on each party differ - both the person and the rōpū whaiora can be accurately described as being ‘subject to the act’ for the duration of compulsory care, because they are both bound and compelled through the legislation. (Where differentiation is needed, the following terms can be used “subject to the act (as tangata whaiora)” and “subject to the act (as clinician)”)
Rights and autonomy enhancing purpose
all processes for compulsory care, and limitations on its use, must maximise the autonomy and rights of people who are experiencing “seriously impaired mental health”, and tino rangatiratanga of tāngata whaiora Māori. Substitute decision making must be minimised and eliminated. All provision of care must:
(i) give effect to the person’s expressed will
(ii) be delivered in a manner that is responsive to, and guided by, the person’s expressed preferences
(iii) be underpinned by a collectivist understanding of rights consistent with Te Ao Maori as well as a Western understanding of individual human rights
(iii) at all times, be able to acknowledge, identify and respond to fluctuating capacity
(iv) centre supported decision making, maximising decision making capacity through a range of accessible, culturally appropriate decision making supports
Therapeutic application
(c) Any use of compulsory care must ensure that:
(i) all care options and interventions provided, and the environments they are provided in, are therapeutic, and are not custodial, punitive, or utilised solely a ‘management tool’
(ii) care options, interventions, and care environments are never provided in ways that amount to torture, neglect or abuse
(iii) supported decision making processes recognise the expertise of people and their support networks, and enable them to self-define what “mental health”, “holistic wellbeing”, “hauora”, “care” and “recovery” mean to them
Least restrictive and least invasive application
(d) Compulsory care must be provided in the least restrictive and least invasive manner, so that, -
(i) compulsory care is never provided for longer than is necessary
(ii) unless it would conflict with a person’s expressed will and preferences, care options should be provided with regard to the least invasive option
(iii) resumption of decision making capacity must be a focus of compulsory care provision
(iv) care directives, hui whaiora and other mechanisms to enable decision making should give particular consideration to a person’s values and views on restrictive and / or invasive care options - to discern whether there is a preference e.g. hospitalisation without medication (less invasive), medication / ECT whilst living at home (less restrictive)
Individualised and responsive application
(e) Compulsory care must
(i) reflect the needs and aspirations of the person, including their cultural and spiritual needs, and be responsive to any trauma experienced by them
(ii) recognise the importance and significance of the person’s ties to their family, whānau, hapū, iwi, family group and community, and the contribution those ties make to wellbeing
(iii) provide for restorative approaches that can be accessed by the person, by their support network, or by an advocate on their behalf, during or after the provision of compulsory care
Equity imperative
(f) Compulsory care must be provided in a manner that upholds te Tiriti o Waitangi obligations and is cognisant of inequities, seeking at all times to minimise these, including, -
(i) physical health inequities experienced by tāngata whaiora
(ii) sanism, mentalism, ableism and epistemic injustice experienced by tāngata whaiora, and the compounded disadvantages faced by tāngata whaiora with
additional marginalised identities
(iii) material deprivation (income, housing, etc) experienced by tāngata whaiora
(iv) disproportionate use of compulsion, and forceful, invasive and restrictive
practises on tāngata whaiora Māori
(v) potential inequities in access to decision making supports for people who appear to agree to care (voluntarily), but who have impaired decision making capacity and are not able to understand and balance available options without supports
[[TO ADD: advocate for better language in the act around compulsory care plan]]
New mechanisms people can put in place before becoming unwell (pāyal)
Recommendation: Legislation must provide the most possible clarity on compulsory care directives and must be legally binding.
It is positive to see the introduction of compulsory care directives, and legislation must provide the mandate for enabling care directives. These however, must be renamed for several reasons:
The term does not make sense - if a person is outlining the care they consent to and do not consent to, that care is provided on the basis of their will and preferences
The language is inconsistent with similar advance planning approaches around the world
It may be off-putting for people to make a “compulsory care directive”
Throughout our submission, we use “care directive” which has been the preferred language of some Thriving Madly contributors. If the introduction of care directives are to be meaningfully implemented, there must be clear information about how to create a valid care directive, IT systems must support the storage and access to a person’s care directive. To enable equitable access to care directives, the legislation must task Te Whatu Ora with funding the awareness and development mechanisms for Care Directives. People must be aware of their ability to develop a care directive and resourced to do so with support from people they trust or in community-based settings such as at workshops run regularly in places like community centres, marae or through general practices by people like community nurses or health improvement practitioners. These workshops should encourage explicit statements made in a care directive on a person’s wishes regarding seclusion, restraint and sedation/use of prn medications. These workshops must be free and accessible, open and encouraged for all and we would like to see hot drinks and kai provided.
People may need more individually tailored information about the care options available to them as well. Financial barriers should never prevent access to information needed to make fully informed decisions and uphold our human rights. Te Whatu Ora should be directed to establish a new care directive fund to enable people who are being seen in primary care (rather than in secondary mental health care) to freely access an appointment of the required length with their GP or nurse practitioner to discuss care options and consents for their care directive.
“Financial resources should never be a barrier to people being able to make or revoke their compulsory care directive”
Suggested new clause - Section 13 (5) - Tāngata whaiora who are currently accessing specialist mental health services must be informed by the service what care directives are, how they differ from any advance care plan or advance directive the person may have already, how to make a care directive, and the independent support available to assist with this. Information should be gathered and reported nationally to ascertain whether care directives are being utilised by all population groups. If there are inequities, targeted information and support should be coproduced to address access to care directives.
Decisions about interventions must uphold an individual's views expressed in their care directive about what is best for them. If a person is placed under the Act and does not have a care directive, an independent support person or advocate must be utilised as soon as possible to ensure the wishes of the person placed under the Act are upheld to the maximum possible extent, and there must be a plan and follow up arranged to ensure a person is supported to create a care directive with support from trusted people of their choosing with consideration given to their unique individual and cultural needs once an individual is considered to have regained decision-making capacity.
Support for the development of a compulsory care plan must not be limited to mental health professionals as they may not have a level of cultural safety or humility required to support their creation of an individual’s care directive, nor the understanding of an individual and their unique circumstances and context.
Regarding clause 14 (2), we believe it should be amended to align with the process of witnesses when making a will, so it must be in writing, signed at the end by the individual it is about and their two witnesses, with all three being present together and with all three seeing each other sign, intended by an individual to take effect as a care directive, and completed when a person has legal capacity.
In order to uphold a person’s legal capacity (which is not the same thing as their decision-making capacity), there must be no situation in which an intentional and deliberately written care directive can be overridden by a clinician:
Content of a care directive | Obligations on person performing function or duty or exercising power | |
Directives pertaining to consents ‘will’ | The methods of care to improve mental health that the maker of the directive consents to receive The methods of care to improve mental health that the maker does not consent to receive | Consent must be taken as informed consent and the specified care may be provided Care that the person refuses / has withdrawn consent for receiving must not be provided |
Directives pertaining to preferences | The maker’s preference for how, where and by who any method of care is provided The maker’s preferences regarding matters set out in subpart 3 of Part 2 Information relating to the maker’s affairs | Preferences must be given effect to, to the extent that is reasonable Preferences must be given effect to, to the extent that is practicable Reasonable efforts must be made to provide the information to the appropriate people |
New roles to ensure rights of patients are upheld
We welcome the creation of new roles to support decision making and participation. These will make a difference to people if they are easily accessible and truly independent of the mental health system. As a Thriving Madly community, we have reflected on experiences with the current Act where independent support and advocacy could have made a difference:
The right thing for my sister would have been when she was in the hospital to have someone who was peer come and speak to her, advocate for her, be a voice for her… She didn’t have a voice, and then when she did have a voice it wasn’t listened to because it came out with a lot of fucks and anger”
“Be with us, when the doctors come in, stay afterwards, explain what has been said - not medical jargon, talk we can understand - help address the power imbalance”
“[There needs to be] peer support in the hospital situation around mental health and addiction”
“Peer support needs to not only be there, it needs to be valued, acknowledged, woven in “
Section 23 - Independent support person
Given the value placed on peer workers, consideration must be given to specifying that these independent support person roles are peer support roles.
“District inspectors are lawyers with a specific scope, having independent support from people with lived experience [is crucial]”
Section 23 (2) tasks Health New Zealand with ensuring the availability of independent support persons to “all patients” on the basis of the person’s request (Section 23 (1). However we strongly believe that to be independent, these roles must sit outside of Health New Zealand. Another entity MUST be identified to be a truly independent ‘home’ for these new roles.
We also believe that people who are under the act (as tangata whaiora) AND people who are voluntarily engaged with care, but who do not have decision making capacity MUST be provided with an independent support person. As such, the process needs to be an ‘opt-out’ process rather than an ‘opt-in’ process for anyone who has impaired decision-making capacity. The only exception to this should be where a person has explicitly stated in an advance care document that they do not consent to be provided with an independent support person.
The process as it stands (opt-in) is insufficient and will entrench inequities as it requires people (who might not have compulsory care plans, nominated persons, or decision making capacity at that moment) to instigate the process for themselves, and this is an unfair burden to place on people. There will be unintentional consequences in that this support will not be available to those who most need it.
While all people accessing inpatient services should be able to access support and advice pertaining to their rights, it is crucial that more intensive decision making support is available to people who are deemed to not have decision making capacity without this support. An independent support person MUST be provided to any person who requires support to make decisions for themselves, whether they are subject to the act (as tangata whaiora) or are in an inpatient service voluntarily but do not have decision making capacity without support. This is because people in this situation may seem to agree on the surface with care decisions, but are not resourced to give fully informed consent that involves understanding and weighing the options available to them.
There is no detail currently in the Bill around who is responsible for ensuring a person connects with an independent support person. Should the responsible clinician have the responsibility of ensuring the provision of an independent support person? Whoever holds this responsibility should be named in the legislation with clear duty and accountability.
Processes are needed for situations where the provided independent support person is not acceptable to the person. Processes are also needed for situations where the independent support person is / would be the only person in a tangata whaiora’s ‘support network’ and they opt out.
Section 24 - Advocate
The addition of an independent advocate role is welcome, and could enable people to have representation and additional support, particularly with legal and clinical processes. As submitted above, these roles MUST NOT be governed by or situated within Te Whatu Ora. Another entity MUST be identified as a truly independent ‘home’ for these roles. They will not have the necessary independence or trust of tangata whaiora if they have the same employing organisation as the clinicians and care team.
"having someone advocating for me who had mana in the eyes of the psychiatrist or the courts [would be needed], so that it's different - because we get lawyers, but still the judges only ever listen to the psychiatrist"
Consideration must be given to the positioning of independent advocates so that they have the mana and respect in clinical and court settings noted above.
Further detail is needed in legislation and secondary legislation around how the independent advocate role will interact with:
The lawyer, if a person has one
Requirements on judges to ‘examine the patient’ where the person opts to be represented by their advocate in place of attending court themselves
“How can the district inspectors, peer support and advocacy work in together?”
“In an ideal world there would be checks, using external independent people to ensure the system is functioning effectively.. it'd be easy for staff to just claim people in facilities know..but it concerns me there need to be better systems to make sure people are leaving when they want to”
There is no detail currently in the Bill around who a request for an independent advocate needs to be made to. There needs to be a clear duty and accountability to facilitate a person’s connection to their advocate and whoever holds this responsibility should be named in the legislation. There are also no process steps for when a person will be offered an advocate - although it is mentioned that they may be provided with the record of the first assessment (Section 59 (2)).
Processes are needed for situations where the provided advocate is not acceptable to the person.
There are various processes within the Bill where ‘advocate’ needs to be added alongside other parties. Some examples include: Section 81 (3), Section 176,
However, a close reading and editing of the proposed legislation is needed to ensure that people are not disadvantaged where they have an advocate in place of a nominated person or independent support person.
Finally, it is excellent to see that a function of the advocate role is to report to the Director on matters relating to the operation and effectiveness of processes and systems for care under the act. This function must be protected through the legislation development process, and be a key source of information for the five-yearly review process.
New participation duty
We welcome the expectation that we will participate in processes about us while subject to the Act, however wording throughout this section, such as “expressing views”, implies a weak approach to participation and could be interpreted as substituted decision-making. This section MUST be reviewed and rewritten.
“I'm pleased, but it needs to go further”
“She had no autonomy over her health, so she felt like she was often fighting the powers that be - the power imbalance was there”
“Change in culture is needed”
“Choices is one of the biggest problems under this act”
It is unclear how participation relates to supported decision-making, where people are enabled to exercise their legal capacity through a variety of means such as being given time and support to understand, support to weigh options, and communication supports. It is also unclear how the participation duties relate to the known will and preferences of the person.
We see participation, supported decision-making, and our will and preferences as being intrinsically connected, and cannot be separated out from each other
We see participation as the right to be fully informed, present, included and involved in the processes that impact us (or represented in these for a by an advocate)
We see decision making supports as crucial resources to enable our capacity to make our own decisions about our mental health care
We see the decisions that we make for ourselves (when we have decision making capacity prior to becoming unwell, or regained through decision making supports) as our will and preferences which must be respected and implemented
The right to be represented by an advocate in these processes, rather than personally participating ourselves, also needs to be included here, and “advocate” needs to be added to section 16 (6).
Underlying the weak participation approach is section 9 (b) which currently allows for the disregard of brief or intermittent indications of capacity, infrequent status reviews, and power solely situated with the responsible clinician to determine whether we have regained decision making capacity in the intervening periods.
Subpart 2 - participation in decision-making must be reconceived as support for decision-making. “Participation in decision-making” implies shared decision-making at best. We MUST have a rights-consistent, supported decision-making-based legislative framework for mental health care provision to meet our needs and address the harm that has occurred in the mental health system previously.
It is positive to see named persons with strong obligations to ensure participation across all processes. In the redrafting of this section, we would like to see named persons and strong obligations retained.
Family and Whānau involvement
We welcome the introduction of hui whaiora and are pleased to see that this is a mechanism to resolve issues, disputes or complaints without the need for escalation to more formal processes. It is wonderful to see this as a possible mechanism for supporting restorative practice to uphold the mana of all parties following the use of coercive practices, and we hope that the use of coercive practices are rare. We would like to see that hui whaiora must include people suitable to the person who has been subject to the Act
“We need people who know us - know what we need”
Thriving Madly contributors felt it was positive to see whānau and family featuring a lot throughout the Bill, and would like to see that whānau are notified of the Act being used on a person if it safe to do so
“It needs to be really important that whanau are notified (if it is not harmful) this needs to happen”
We also heard that parents were not seeing their children when under the Act because the parent didn’t know they could have their children visit - the focus was on the patient as an individual only under the current Act. We want to see that the rights of the patient and their whanau are at the centre of care provided and that the aim is not to keep a person on the Act any longer than needed.
There are tensions inherent in family and whānau involvement to respect peoples’ different relationships with their whānau and family, and different levels of comfort or safety in their involvement. It is positive to see the legislation reflecting the range of ways that people might be comfortable with involving their whānau or family. Any secondary legislation, guidelines and implementation work needs to remain cognisant of this and uphold the rights of people to decide who they want involved in their care and how.
It is crucial that whanau and family are not put into a position of substitute decision making - as currently in Section 32 (2). Careful attention should be given in the process of making this legislation to ensure that there is no substitute decision making by whanau or family enabled.
“Lucky for those that have family that listen and support and take them out of care when it's not working.. but for those that don't I worry”
“My mother took away my keys, car and my money etc so I had no way to get myself home. They shouldn't have let her take them.”
Strengthened Rights
We support the expansion of rights to people who are not subject to an order. It is important that rights are explicitly expanded to include people who have a welfare guardian under the PPPR act.
While we comment below on the way that rights need to be extended to reflect new processes of supported decision making, and must not enable substitute decision-making, it is important to start with our right to experience our lives and retain authorship in the sense-making of our experiences. This relates to the focus on shifting from a biomedical paradigm to a human rights framework for understanding and responding to distress as recommended by the World Health Organization and the Office of the High Commissioner on Human Rights.
“Being allowed to be mad and have different non-pathologizing explanations for our experiences”
"I can't imagine a system where I would actually be listened to"
Also important to members of our community is the right to dignity alongside full information when entering mental health services, and dignity, full information and a process to restore mana and authority on exiting from the act or leaving hospital.
While it is positive to see current discrepancies in rights addressed, and we would not want to see any restrictions on rights, the content of the Rights section (sections 25-38) remains largely unchanged from the 1992 MHA and does not reflect new processes and protections. The rights must be aligned with the new processes and proceedings outlined in the Bill to provide clarity and to truly strengthen rights. Given the centrality of decision-making capacity in the new legislation, the rights of people to make decisions about their mental health care, and to receive decision making supports should be clearly outlined.
“If you don’t know what you can ask for, then you can’t make the choices - Knowledge is power”
Additional rights need to be added for people who have decision-making capacity including:
Right to make and revoke care directives
The right to make a care directive
The right to support from a mental health professional in making the care directive
The right to change or revoke a care directive
The right to receive care that does not override advance preferences
Right to appoint a nominated person
The right to appoint one or more nominated persons
The right to revoke nominated persons
Right to refuse care
The right to not be held in a hospital
The right to decline treatment or care offered
The right to outline in an advance preference statement what care is not consented to on future occasions when there is a lack of decision-making capacity
An additional section of rights must be added, specific to people who are experiencing impaired decision-making capacity (whether or not they are subject to the act or in an inpatient unit voluntarily):
Right to nominated person’s support
The right to meet with and talk to nominated person/s about care options to support decision making
The right to have nominated persons present in Hui Whaiora
“We could not get through the system, without my sister advocating really strongly”
Right to be provided with independent support
The right to be provided with an independent support person
The right to utilise an independent support person to understand assessment processes, participation processes, rights, proceedings, restorative processes and complaints mechanisms
The right to spend time with an independent support person to understand and weigh options, and communicate decisions around mental health care
Right to request and be represented by an advocate
The right to be provided with an independent advocate on request
The right to utilise an independent advocate to understand assessment processes, participation processes, rights, proceedings, restorative processes and complaints mechanisms
The right to spend time with an independent advocate to understand and weigh options, and communicate decisions around mental health care
The right to be represented by an advocate in processes and proceedings within the Act
The right to be represented by an advocate in complaints processes
Additional rights to restorative processes are needed for people during their time subject to the act (as tangata whaiora), or in a inpatient mental health facility, and following these experiences:
Right to access restorative processes
The right to call for a Hui Whaiora to resolve issues, disputes or complaints
The right to call for a Hui Whaiora to uphold mana following coercive practices
This right extends to people who are no longer under the act and to people who have been discharged from hospital who wish to access a restorative process to address issues with their recent care
“They are all in positions of power - so once you’re abused by someone in a position of power - you live in fear”
“Shame comes with it as well, a lot of whakamā comes with it as well”
“All you want to do is talk about the injustice, and be validated in that”
“[During the process, the staff member] validated me as a consumer for what had gone on, told me the process of what he was going to do with the person who I dealt with - It restored that faith back”
Other rights to be strengthened
Section 30 should enable people to access independent physical health advice as well as the opinion of another mental health practitioner. Given the recognition of the need for diverse mental health expertise within the rōpū whaiora, people should have the right to consult more than one mental health practitioner of their choice to get additional opinions, these must include to right to seek the perspectives of:
Mental health practitioners from an Ao Māori perspective
Trauma informed practitioners views on the person’s distress and care needs
Mental health practitioners who specialise in a drug-centred model of understanding mental health care and treatment not just a disease-centred model
People (not necessarily mental health practitioners) who have expertise in assessing and/or enhancing decision-making capacity
Rights must not allow for substitute decision making. To uphold this, the following MUST be amended:
Section 33 (2) currently allows substitute decision making by nominated persons or whanau with regards to the creation or use of audio or video recordings. Nominated persons and whanau MUST NOT be able to consent to the making and use of audio or visual recordings on behalf of a person who cannot consent. Only the person themselves should be able to consent to this. Safeguards against coercion must be in place whenever audio or video recordings are proposed to a person. The right to revoke consent for the use of video or audio recordings MUST be in place at all times following their creation, as well as the right to order the destruction of any such recordings.
Section 34 (2) and section 35 currently allow a ‘best interests’ approach whereby the responsible clinician can limit a person's access to visitors and ability to communicate with others. Consideration must be given to how this can better reflect ‘will and preferences’ and a human rights approach, rather than a substitute decision-making ‘best interests’ approach. People's capacity to make decisions about seeing and communicating with others MUST be respected, and, (as outlined in Section 9 (4) - meaning of capacity), a person cannot be considered to lack capacity on the basis “that their decision making results in, or may result in, poor outcomes for the person”.
Section 39 needs to be strengthened. Section 39 (2) - Where there is a complaint about a breach of rights, a District Inspector or Official Visitor MUST investigate (not “may” investigate). Section 39 (7) - Where report recommendations have not been satisfactorily addressed, the District Inspector or Official Visitor MUST report the matter to the Director (not “may” report). This is essential for the collation of national-level data. We believe that section 39 (8) should require the Director to order the service to notify the public of the recommendations, how they will be addressed and when.
To embed a rights-focussed framework, in court processes, judges must be directed to consider both the “condition” of the person (in relation to the compulsory care criteria) and the rights status of the person. They must also be required to consider if decision-making supports can be strengthened for the person and direct clinicians to implement additional decision-making supports.
New comprehensive care planning requirements
We welcome holistic assessment that include mental, physical and social needs, socio-economic circumstances, strengths and protective factors to inform a person’s care.
We wholeheartedly support the inclusion of non-pharmaceutical options that will be provided to meet a person's assessed needs.
It is excellent to see that the care plan must give effect to the will of the patient, take into account their care preferences and that the care plan must include the content of any care directive a person has made.
We also support that the care plan includes:
planning for a transition from—
(i) inpatient care (if the person is an inpatient) to community care; and
(ii) compulsory care to voluntary engagement with mental health services.
“Someone can see themselves getting into distress - they might need some help with the dishes or getting on top of things. Is there some way under the legislation that this can be the kind of care available? This would avoid crisis, admissions, seclusion, etc.”
Clearer statutory processes
We are in support of a person being released if at any time a person’s responsible practitioner considers they no longer meet the criteria for compulsory care, and the ability for whānau to raise their views on this.
The Bill continues to enable community treatment orders, and the review periods indicate that people might continue to be on community orders for a long time. This is not ok. We are aware that there is no evidence for community compulsory orders, and Thriving Madly community members' experiences of community treatment orders under the current legislation highlight the despair and hopelessness we can face. Community care orders should not be a feature of new legislation. Instead, we support:
strong obligations on services to continue to offer us holistic care when we are released from the Act, or leave hospital, and;
home-based crisis care options, where intensive support is provided to us at home, or the home of a whānau member or loved one in place of a hospital admission (and some alternative to an inpatient order may be necessary to enable this)
increasing access to alternatives to hospital admission such as being cared for in crisis respites
More expertise to meet the person’s needs (rōpū whaiora)
We welcome the introduction of rōpū whairoa and for each person’s responsible practitioner to ensure the rōpū whaiora includes the expertise necessary to meet the needs of the patient, including cultural expertise. Tending to equity requires both access needs AND support needs to be met; these are not the same thing and consideration must be given to both to ensure a person understands what is happening
“Is it expertise by professional or expertise by experience?”
In the context of who is part of a person’s rōpū whaiora, we are strongly in support of appropriately qualified and experienced meaning not only clinical but also cultural expertise, and expertise in lived experience of mental distress. We feel that people who may have an understanding of us and our experience aside from our mental distress are essential for providing care for us as a whole person. We want those with cultural and lived experience who are part of a rōpū whaiora to be taken as seriously as registered health professionals
"having someone advocating for me who had mana in the eyes of the psychiatrist or the courts, so that it's different - because we get lawyers, but still the judges only ever listen to the psychiatrist"
Contributors in our community raised concerns about use of the word “care” and that care is not currently specified to have a therapeutic requirement:
“it could be a swing back towards custodial approaches if there isn’t an emphasis on holistic therapeutic support”
A contributor raised a point about language and peer workers not using the language that is normalised in clinical settings when working with people who might find this hinders the working relationship. As such, any guidelines developed for roopu whaiora must attend to language, and the need for person-centred non-pathologising language in these spaces:
“...when peer support workers use language that is not peer support, and the person gets activated, it links to their trauma in hospital or prison or wherever else”
“At that time I didn’t know what I needed, because of the distress at the time, I was lucky someone was there who helped work through that with me”
“Having an understanding of worldview”
We would like to see people part of a person’s rōpū whaiora committed to returning power to the person who has been subject to the Act
“It’s about power - we need to be given back the power”
Tighter controls on certain practice and treatments
We don’t like that seclusion remains an option, including for children, in this Bill. We encourage the Select Committee to visit seclusion rooms and sensory spaces to gain an understanding of what this experience could be like for someone experiencing an acute level of extreme distress. We are in support of ending the use of seclusion. We are pleased to hear the tighter controls on certain practices and treatments, and due to the time frame given for this submission, we have not been able to think and respond as comprehensively as we would like. Instead, we will share some of the feedback we heard from contributors:
“Remove seclusion all together - there is no place for seclusion - the legislation must eliminate seclusion”
[On seclusion] “It’s damaging to everyone, to the person, to their whānau, to the staff as well”
“It spans beyond seclusion - sometimes people have been given short term diagnoses, or given medications as a management tool as well - that’s really harmful as well”
“Huge doses of sedatives because the system can’t manage them”
“Create space for developing safe nests and relational ways of supporting people”
“Even in respite - I was locked in a small room - it was like being in a cell - a tiny cell with a nice bed”
A question posed: “What is a kaupapa maori understanding of seclusion?”
An answer suggested: “Take the time and space you need, we’re here”
“In a collective model, how do you seclude one person?”
Some contributors shared the traumatic nature of being forced to take medication on a compulsory treatment order, the sadness at the effects of forced treatment and the significant negative impact our ability to live a life worth living
"it contravenes the bill of rights, that we have a right to be free from medical experimentation; psychiatry is not evidence based, so every provision of medication to a person is trial and error, see if it works - it's medical experimentation”
“I don’t know how to separate accountability out from compulsion if that makes sense. I feel like I have lost control of my narrative of self because what I mean for psychiatry has taken over my perception of myself: I am compelled to see myself through psychiatry’s lens.”
Strengthened and new requirements to support care based on a person’s needs, in particular cultural needs
Te Tiriti o Waitangi has a unique and particular significance for Māori and non-Māori living in Aotearoa New Zealand; we, Thriving Madly are on a learning journey when it comes to understanding Te Tiriti o Waitangi and we would like to see this Act provide the impetus for all mental health professionals to be supported in their own learning journeys. Understanding the implications of breaches of Te Tiriti o Waitangi is crucial for understanding inequity for Māori and for understanding how we have come to such inequitable outcomes for Māori.
We would like to see the adoption of the approach taken in Kia Manawanui, in Section 5, the following clauses must be added:
Supporting tino rangatiratanga and recognising Māori self-determination
Improving equity for Māori and all people
Actively protecting Māori mātauranga
Providing options that are created by and for iwi, hapū and whānau
Working in partnership with Māori
The United Nations Declaration on the Rights of Indigenous Peoples affirms the rights of Indigenous Peoples to be actively involved in developing and determining their health programmes, to maintain their use of traditional medicines and health practices, to access (without discrimination) all social and health services and to enjoy equal rights to the highest attainable standard of physical and mental health (articles 23 and 24)
We are in support of Section 3 (b); we are pleased to see the intention to improve equity in mental health outcomes among New Zealand’s population groups by striving to eliminate mental health care disparities, in particular for Māori, and we are curious about the plan to enable this. While some actions to address inequities will be in subsequent requirements, guidelines and implementation planning, we do not believe that the changes in processes and proceedings outlined in the legislation will currently enable equity. We believe by including the principles above from Kia Manawanui, this bill will provide a stronger foundation for the development of plans and resourcing that upholds Te Tiriti o Waitangi. We also wish to stress that eliminating mental health and mental health care disparities are not enough - equity in the upholding of rights, will and preferences for tāngata whaiora Māori is also essential.
Culture is unique to an individual, and it must be understood broadly to capture not only a person’s ethnicity, but also the impact and significance of factors such as disability status, spiritual or religious beliefs, and identities a person may hold. The systems must allow for understanding of the unique worldview and culture of an individual in its care, and all references to respect for religious beliefs must be extended to include spiritual beliefs.
The way we make sense of our experiences are influenced by cultural factors such as our upbringing, beliefs, values and traditions; this Bill must accommodate that what may be perceived as mental illness through a the lens of biomedical understanding may be understood and supported differently depending on the identities and beliefs held by an individual. Practically, this would include clarity that when we have a different worldview around the causes or labels for distress (e.g. diagnosis, spiritual emergency, etc.) this can not be taken as an indication of a lack of decision making capacity. It would also mean that services shift the balance of their workforce over time to include more cultural and spiritual experts and support roles.
“more Pukenga Atawhai, and strengthening the Pukenga’s role so they are always available to support people, not only Iwi Māori, but anyone who wants their support”
“Having an understanding of worldview”
When determining what is “reasonable” it is crucial that dominant cultural worldviews do not subjugate or pathologise people from different cultural backgrounds. For example Section 34 - Right to receive visitors and communicate with others at ‘reasonable times’ and at ‘reasonable intervals’ - what is a reasonable level of connection is likely to be very influenced by culture
Legislation is an important mechanism for ensuring culturally safe and appropriate responses within the dominant worldview held by the mental health system. Cultural considerations must be paramount not only for tangata whenua, but also for ethnic and religious minorities, migrants, refugees and asylum seekers whose support needs must account for their specific and unique cultural values and experiences.
Updates to administrative roles
In addition to the specific feedback below, we see a lack of accountability in the legislation. It is unclear what mechanisms exist for tāngata whaiora when their rights are not upheld, nor when we believe that clinicians or others with duties to us under the act, have not enacted their duties. Clear accountability is needed. There must also be clarity around ascertaining if a person with duties under the act (“where reasonable” or “where practicable”) have enacted these acceptably.
We appreciate that appointments to the Director of Area Mental Health Service roles will be published in the Gazette. We would also like to see public transparency when an appointment is suspended or removed from office for both DAMHS and District Inspectors and Official Visitor roles. Summaries of the monthly reports produced by District Inspectors and Official Visitors to the Director should also be available and easily accessible for tāngata whaiora and whānau.
Section 153 (4) and (5) must also allow for a District Inspector or Official Visitor to be accompanied by interpreters or translators where tāngata whaiora in a service have a language other than English as their first or preferred language, or when tāngata whaiora in a service are Deaf.
We support the inclusion of Section 161 - Crimes of Torture Act 1989 not limited.
We appreciate the requirement that any Mental Health Review Tribunal or Forensic Patient Review Tribunal includes members who have
lived experience of being subject to compulsory mental health care:
knowledge of tikanga and mātauranga Māori
We are aware of the challenges in being the sole lived experience perspective in different spaces and strongly encourage exploring the possibility of requiring more than one Review Tribunal member to have lived experience of being subject to compulsory mental health care.
We also are very supportive of Section 166 co-opting suitable persons. However, we do not feel that the burden to request this should fall on the patient or applicant. Co-option of suitable persons should be a requirement due to the nature of compulsory intervention.
In electing a convenor of a Mental Health Review Tribunal (Section 170) it is important that professional and legal knowledge is not valued more highly than lived experience and cultural knowledge. Data on convenors elected should be gathered at a national level to ensure equity, particularly as the convenor holds the deciding vote when necessary.
It is crucially important that section 180 does not result in the compulsion of any person who no longer meets the compulsory care criteria. The person must be able to have their nominated person, independent support person or advocate with them during processes outlined in sections 180 and 181.
Section 184 (3) and Section 200 (3) must require a copy of the record to be given to the Director as well, to ensure national-level data on the use of sedation and force can be compiled and monitored, as this can be a very invasive and traumatic process for people to experience and conflicts with rights to bodily integrity and freedom of movement.
Section 190 - We question why ill-treatment and neglect have to be ‘intentional’ in order for it to be considered an offence. This does not seem right.
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