Thriving Madly Submission on Pae Ora Amendments

“The questions make me think of are people’s needs being met?

Wellbeing is supported when a person needs are met and with the

ability to access the right support and being part of a caring

community. I think we have to notice all the ways the current system

isn’t working to understand how to create a better one. I think we

need to dream the biggest, most beautiful, creative and dynamic

strategy of what could be possible before we try to make it

grounded and practical in the world.”

Who are we?

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.

Should Aotearoa have a new ‘mental health and wellbeing strategy’?

Thriving Madly community members have said Yes! We should have a new strategy.

However our enthusiasm comes with caution. Some in our community felt that what we need

is a direction/vision of how we want to live as people of Aotearoa. Some in our community do

not feel that a ‘mental health’ strategy is what is needed. The focus needs to be on wellbeing

holistically.

“Holistic wellbeing is important to us and we want this to be enshrined in

legislation .....so then it must be considered and addressed/provided for

by the government of the day. It cannot and must not be focussed on

mental illness and addiction and on services rather than on communities,

solely on intervention rather than population health approaches.”

“I think we miss the point when we focus so much on (mental) health.

Enabling human lives is not a mental health issue. Mental health is just

one component of wellbeing. And it does not require wellbeing, nor does

wellbeing assume mental health. A focus on mental health will inevitably

lead to a preoccupation with its absence. And we will end up back where

we started.”

Many of us have seen a long history of plans, strategies and policy that has not resulted in

change in our lives. This strategy must be different; it must lead to concrete change not only

to services, but by enabling action to address social and economic determinants of distress

and wellbeing, and resourcing communities to support wellbeing.

We also want to see the independent role of Te Hiringa Mahara (the mental health and

wellbeing commission) protected and its focus on wellbeing maintained. Because mental

wellbeing is much broader than health entities and the health sector, any strategy must direct

cross government action on producing mental wellbeing outcomes across government

agencies such as justice, education, ministry of social development and Whaikaha.

“Nothing about us without us” remains a paramount call from our members and the wider

lived experience community, and this should extend to developing the strategy and

determining what ‘wellbeing outcomes’ are meaningful from a lived experience perspective -

not doing this will inadvertently compound harm (e.g. by promoting services to focus on

clinical outcomes rather than subjective wellbeing outcomes, or by pushing people

indiscriminately into work or formal education).

The strategy must acknowledge intersectionality and work with the existing health strategies

to uphold our health and wellbeing, and it must go further than the current proposed purpose

and requirements: to have a dual focus both on mental wellbeing and on physical health

equity for people with lived experience of mental distress and addictions.

How should lived experience communities be involved?

We appreciate that the present submission is on the legislative changes to the Pae Ora Act

to enable a foundation for a new strategy, rather than the details of the proposed strategy

which will be developed later. However, it is important for there to be transparency around

whose views were heard during the submission process and whether sufficient feedback

from Tangata Whenua and lived experience individuals and communities was obtained.

Across the whole process of the creation of a mental health and wellbeing strategy, we feel it

is of the utmost importance that the voice of lived experience communities and those who

experience mental distress are at the heart of this particular strategy, that these voices are

privileged and honoured. It must not solely be service providers and the Consumer, Peer

support and lived experience (CPSLE) workforce contributing to the formation of this

strategy. Lived experience communities should be supported to take a leading role in

understanding, shaping and monitoring this strategy.

Shifting the focus to wellbeing needs, social determinants and

community resourcing

Some of us have had experiences of harm in mental health services, being denied services

when seeking support, spending years on waitlists for services, and some of us have not

found anything that has been on offer by services helpful. What’s helped for many of us in

these situations have been community connection and community development initiatives. If

this strategy is a wellbeing strategy, it needs to be acknowledged that community is what

builds our wellbeing. Sections 46A(2) and 46A(3a;b&c) - purpose and requirements - need to

change to centre wellbeing and enable a focus on community.

"When people are part of community, there is opportunity to exist as

a whole person, with all of their humanity rather than reduce a

person down to one part of their identity or experience"

Outside of health entities, communities can provide a non-pathologising, warm and

compassionate support system, that can be focussed on practical support, human

connection, belonging, and supporting flourishing. Some of us have moved away from the

crisis mental health services we’ve previously used and are intentionally supported in a more

mutual way by other people, friends and families in our community outside of services. With

de-institutionalisation and the move towards “community care” from the 1990s onwards,

there has been a shift to services provided by NGOs but these community-based services

are not necessarily community care where one can give and receive support in a mutual

way.

Wider changes to the Pae Ora legislation will be needed to shift the focus to investing in

people, whānau and communities to support mental health and wellbeing, rather than

focussing solely on service provision by NGOs or the mental health and addiction system. A

focus on ‘health entities’ only risks a focus on Te Whatu Ora and NGO services that these

entities deal with, rather than communities which receive small pockets of funding outside of

the health sector or rely on members' good will and contributions.

Additionally, changes to the purpose and requirements of the proposed amendments will be

needed to ensure that social and economic determinants of distress and mental wellbeing

are a focus.

“Insecurity has the biggest negative impact on my wellbeing. Especially housing,

food and financial insecurity”

In our community, we NEED immediate change to improve our wellbeing - many of us are

beneficiaries, subject to mental health legislation, receive individualised funding to meet our

care needs, live in emergency and/or transitional housing and face significant barriers to our

wellbeing. There are concrete things that could happen now that would make a difference

for us and we want changes to Pae Ora legislation to make this happen. This includes

ensuring the scope of the requirements and purpose allow these aspects of our lives to be

relevant and important when it comes to the strategy.

Independent monitoring of the mental health and wellbeing systems

The legislation must uphold protection for the important role of Te Hiringa Mahara.

Te Hiringa Mahara (Mental Health and Wellbeing Commission) needs to maintain

independence from the government of the day - it needs to remain an independent crown

entity and not become a health entity.

What else must the strategy do? Advice on section 46A(3)

TE TIRITI O WAITANGI

While the Pae Ora legislation includes a focus on Te Tiriti o Waitangi, Thriving Madly

members also wanted to see the requirements of the mental health and wellbeing strategy

expand so that it reflects and gives effect to Te Tiriti. In developing the strategy, taking a

bicultural approach to the process will lead us to the kind of strategy that we believe will lead

to greater wellbeing, individually and collectively.

PAINTING THE PICTURE OF MENTAL WELLBEING IN AOTEAROA

Some members are also really concerned about the focus in the requirements only on

assessing the current state of and performance of the health sector in relation to mental

health and addictions. Questions raised included:

● What about other systems/sectors that have a role with wellbeing?

● What about the picture of population mental wellbeing e.g. current state of levels of

distress, addiction, current state of social and economic determinants?

● Why focus only on health when it is often not best placed to support holistic

wellbeing, due to centering a medical approach and not having the ability to directly

impact the social and economic determinants of mental distress and wellbeing?

C

Things that hinder wellbeing for those in our community - experiences of grief,

shame, aloneness, relationship challenges, poverty, earthquakes, housing

insecurity, environmental crisis, sexism, work insecurity, feeling like a burden and a

problem, and feeling that there would be no safety net to hold me if I could no longer

work.

Things that support our wellbeing - being part of community, experiencing

arohatanga, āhurutanga, whanaungatanga, manaakitanga, understanding, practical

support, fun, trust and belief.

Connection with friends supports my wellbeing (social connection), as does eating

delicious, nutritious kai, getting sufficient quality/quantity of sleep and moving my

body. So does engaging in activity meaningful to me.

COMMIT TO UNDERSTANDING COLLECTIVE AND COMMUNITY WELLBEING

Wellbeing cannot be measured solely at an individual level, recognition that wellbeing is

shaped by social, historical and cultural contexts. There is a notion too, and decisively, of a

community's wellbeing. A well or healthy or flourishing or enabling community would be one

which is in a position to support the achievement of individual wellbeing. In my experience,

this idea of community wellbeing is not often talked about. Again, a very Western focus on

the individual, at the expense of the conditions which make that individuality possible. The

strategy must be community focussed (not as in NGO community services, but as in the

geographical, cultural and relational communities we belong to).

ADDITIONAL MANDATED FOCUS ON PHYSICAL HEALTH EQUITY

The existing health strategies enabled by the Pae Ora legislation have a focus on health

equity and meeting the particular needs of underserved or marginalised population groups.

People with lived experience experience significant health inequities as shown by the equally

well project. For consistency, and to make a real difference to our health and wellbeing,

health equity should be a required area of focus that the Pae Ora amendments name for the

strategy.

What does wellbeing mean to you?

It is critical that thought is given to what wellbeing is and how it is defined and aligned with

other documents:

“But to achieve a strategy of this kind, we first need to be clear what we

want to mean by wellbeing. Most definitions are so thin (and wolly-headed)

as to be almost meaningless. They can mean anything, whatever anyone

wants them to.”

Members of our community advocate for the Pae Ora amendments to be clear about what is

meant by ‘wellbeing’. Focussing on holistic wellbeing or on ‘mental wellbeing’ would be

useful. Some models of wellbeing that were suggested as a foundation for Pae Ora and the

mental health and wellbeing strategy were:

● Te Whare Tapa Whā - as a culturally grounded approach for holistic wellbeing

● Te Pae Māhutonga

● Fonofale model

● Kia Manawanui - as clearly outlining ‘mental wellbeing’ and the mental wellbeing

sector (some members expressed feeling hopeful and encouraged by the approach

described in Kia Manawanui - spanning health promotion, people supporting each

other in communities to specific services)

● He Ara Oranga - the expression of holistic wellbeing outcomes from a te ao Māori

and a shared perspective

● Human rights frameworks - as wellbeing is not possible while we are are not treated

as full citizens and can lose our rights

“ A diagnosis of mental illness can strip away a person's moral status, and

therefore of the rights that come, that can only come, with the granting of

moral status. No discussion of what will be necessary for the attainment

of wellbeing is viable unless such concerns are first addressed.”

In framing ‘wellbeing’, again it is important that mental health alone does not equate to

wellbeing, and that the health sector alone cannot be responsible for improving wellbeing or

mental wellbeing- this must be achieved across government agencies, non-government

organisations and communities, whānau and friends.

Considerations regarding mental health, addiction and wellbeing

Wellbeing across systems (such justice, education and social development) must be

considered and not merely located within the health and mental health and addiction

systems. A mental health and wellbeing strategy needs to be an across all-of-society

strategy and not one devised solely by the health sector, for the health sector and owned by

the health sector. All social sectors, all significant communities of interest, (for example,

ethnic communities, LGBTI+ people, people with disabilities, refugee communities, all

marginalised population groups, arts and sports organisations) must contribute to the

formation and enabling of this strategy. Outcome measures from a mental health and

wellbeing strategy must be developed in partnership with tangata whaiora, community

groups and tangata whenua.

Thank you!

On behalf of Thriving Madly Community of mad, divergent and neurodivergent beings, thank

you for reading our submission to the Pae Ora (Healthy Futures) (Improving Mental Health

Outcomes) Amendment Bill