24.  Part 1 of the the Inquiry’s final report, Whanaketia – Through pain and trauma, from darkness to light, explains that the Terms of Reference directed the Inquiry to focus on the experiences of “those with … mental illness” who suffered abuse and neglect in State and faith-based care.[8] The Inquiry uses the term mental distress instead of mental illness.

25.  The Inquiry’s approach to understanding the experiences of survivors who experienced mental distress was informed by the knowledge, expertise and work of its Mental Health Reference Group and what it heard from survivors, their families and communities.

26.  The Inquiry acknowledges that people who experience mental distress and their communities have their own histories, worldviews and values. The Inquiry acknowledges that Māori, Pacific Peoples and those who identify as Takatāpui, Rainbow or MVPFAFF+ who also experience mental distress have their own unique experiences and perspectives.

Rights and identities

27.  How people who experience mental distress, their families and communities understand their identities depend on each person’s perspective. This can vary widely and can change over time.

28.  Mental distress means a mental or emotional state that disrupts daily life and that can vary in how long it lasts and how intense it is. People who experience mental distress include those who are seriously upset, people who are reacting naturally to a stressful situation, and people with mental illness (whether medically diagnosed or not).

29.  The Inquiry acknowledges that many people who experience mental distress do not self-identify as disabled. They would, however, still be included within the definition of disability in the 2006 United Nations Convention on the Rights of Persons with Disabilities (CRPD). Discrimination against disabled people was not illegal in Aotearoa New Zealand until the introduction of the Human Rights Act in 1993. Disabled people’s specific rights are described in the CRPD, but not all these rights have been incorporated into Aotearoa New Zealand's domestic law.

30.  People with diverse impairments, including experiencing mental distress, continue to face barriers that non-disabled people take for granted. These include barriers to autonomy, participation, full citizenship and recognition as productive members of society. Disability communities continue to work towards addressing the gap between disabled people’s rights and the realities of their daily experiences.

31.  Ableism and disablism contribute to the barriers experienced by disabled people by creating discrimination. They are belief systems that see value in people only according to their ability to have bodies or minds that fit social and medical definitions of ‘normal’ and are considered productive and desirable.

32.  Ableism is the value system that results in attitudes and behaviours through which society privileges non-disabled people. Ableism is widespread and systemic, and often arises from ignorance rather than conscious intentional discrimination and harm. Invisibility of disabled people and disability issues in the public discourse contributes to ableism. Disablism is conscious, direct discrimination against people who are disabled, based on their disability.

33.  The Inquiry heard from survivors who had experienced ableism and disablism related to their history of experiencing mental distress that affected their ability to access healthcare, employment and housing, and being believed when they reported abuse and neglect in care.

How the Inquiry framed its analysis and understanding of abuse and neglect

34.  Based on what survivors, their families and communities shared about their experiences, the Inquiry found these principles from the CRPD appropriate to help frame its understanding and analysis of the abuse and neglect suffered by survivors who experienced mental distress.

35.  The CRPD principles are:

•  Respect for inherent dignity, individual autonomy – including the freedom to make one’s own choices – and independence of persons:
• Non-discrimination
• Full and effective participation and inclusion in society
• Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
• Equality of opportunity
• Accessibility
• Equality between men and women, and children

Survivors who experienced mental distress

36.  The Inquiry heard from approximately 321 survivors whose first entries into care were to mental healthcare settings. Of those:

• 27 percent entered for troubled behaviour
• 15 percent entered due to mental distress
• 8 percent entered by State requirement due to unsafe environments, including abuse at home
• 4 percent entered due to neglect by parents
• 8 percent of survivors did not know why they entered.
• 8 percent were placed by their parents because they were unable to manage or care for them or for unknown reasons
• 4 percent of survivors entered following recommendation by authorities.

37.  A small number of survivors said they had entered because they had disabilities and had no other options. Some survivors were placed into mental healthcare settings because of societal attitudes and discrimination based on their sexual orientation.

38.  Most of the evidence the Inquiry has received from survivors relates more to experiences of entering mental health care during the 1950s to the 1980s, in the era of large-scale institutions. This pattern aligns with findings from a report the Inquiry commissioned into the size of care groups.>[9]

39.  The Inquiry has heard less about survivors’ experiences of community-based mental healthcare and support services in the latter part of the Inquiry period, particularly the 1990s.

40.  Many survivors told the Inquiry that they engaged with mental health services as adults to address the impact of abuse and neglect they experienced in care when they were younger, such as experiencing mental distress. However, these survivors did not always go into detail about their subsequent pathways or experiences in these mental healthcare settings.

41.  Just under half (45 percent) of survivors who experienced mental distress identified as Māori. These survivors experienced increased suffering through cultural abuse and neglect compared to others.

42.  The Inquiry uses the term ‘mental healthcare settings’ to cover the different types of mental health services survivors spoke about. All these settings fall into the category of what would now be termed specialist services.

43.  Specialist services cater to people with long term or complex needs. In the early part of the Inquiry period this meant large psychiatric hospitals and psychiatric wards attached to general hospitals.  As services evolved in the 1980s and 1990s, specialist services came to include kaupapa Māori services, therapeutic groups, psychoeducational groups, and community support groups. District Health Boards (DHBs) and their predecessors were responsible for funding and delivering these services, which could be provided directly or through non-governmental organisations (NGOs).