Equity requires visibility: intellectual disability and Aotearoa New Zealand’s mental health roadmap

In June 2026, Te Hiringa Mahara—Mental Health and Wellbeing Commission released the Roadmap for mental health, addiction, and wellbeing, calling for faster, more focussed action as psychological distress continues to rise across Aotearoa New Zealand. Building on the 2018 He Ara Oranga inquiry and 5 subsequent years of monitoring and advocacy, it sets out connected priorities: supporting young people, improving early and equitable access, responding effectively in crisis and centring people with lived experience and their whānau. Equity sits at its heart, with explicit commitments to Te Tiriti o Waitangi, Kaupapa Māori and Pacific services.¹

We welcome the Roadmap and its equity ambitions. Yet people with intellectual disability, despite experiencing substantial and enduring health inequities, are absent from the document. This invisibility is reflected in policy, data systems, accountability arrangements and workforce planning. We argue that explicitly recognising people with intellectual disability is essential if the Roadmap’s equity ambitions are to be realised.

Intellectual disability and equity: who remains difficult to see?

People with intellectual disability experience some of the poorest health outcomes in Aotearoa New Zealand. Compared with the general population, they have substantially reduced life expectancy, higher rates of potentially avoidable hospitalisation and premature mortality and persistent barriers to timely, appropriate healthcare.² These inequities are compounded for Māori with intellectual disability—and, on more limited evidence, for Pacific peoples—whose experiences sit at the intersection of multiple forms of disadvantage.^2,3

Mental disorders are also more common in this population than in the general population. International studies estimate prevalence rates for psychiatric disorder between 30% and 50%, depending on case definition.⁴ Yet mental illness frequently goes unrecognised and untreated, or is attributed to the intellectual disability itself (so-called diagnostic overshadowing).⁵ Communication differences, atypical symptom presentation, diagnostic uncertainty and limited exposure to intellectual disability in professional training all contribute to delayed diagnosis and treatment.^5,6 Most mental health clinicians encounter people with intellectual disability in routine practice, yet many report limited confidence in assessment, formulation and treatment planning—particularly where there is severe impairment, co-occurring autism, trauma or significant behavioural distress.⁶

Access to evidence-based intervention is correspondingly uneven. People with intellectual disability are less likely to receive adapted psychological therapies, comprehensive multidisciplinary assessment or timely specialist advice as their mental health deteriorates. Behavioural distress is instead too often treated as a management problem, with psychotropic medicines prescribed for prolonged periods in the absence of a clear psychiatric diagnosis.^7,8 Families and disability providers describe struggling to obtain help before a crisis. For those with highly complex needs, these barriers culminate in repeated crises, restrictive interventions, prolonged admissions often in locations very far from home and whānau, placement instability and involvement with compulsory care and forensic services.⁸ Such outcomes are not inevitable consequences of disability; they are the visible end of an invisibility that begins much earlier—in the policies that set priorities, the data that track performance, the arrangements that assign responsibility and the workforce that holds expertise.

Visibility in policy and planning

In policy, invisibility takes the form of omission rather than explicit exclusion. This omission limits implementation of the Roadmap’s commitment to equitable access. People with intellectual disability are more visible within rights discourse and disability policy; they are not equally visible within mental health reform. Disabled people are named in the relevant strategies—the Draft Mental Health and Wellbeing Strategy lists them among groups with poorer outcomes, and the Health of Disabled People Strategy sets explicit goals for disability data and workforce capability.^9,10 Intellectual disability is seldom identified in its own right, thus risk falls between disability and mental health policy, with neither assuming clear responsibility.

This matters because policy does more than express values. It determines what is counted, what is commissioned, what expertise is built and whose responsibility care becomes. A population that is not named is, by the same logic, less likely to be measured, prioritised in workforce planning or protected when services are redesigned under fiscal pressure.

The invisibility of people with intellectual disability is particularly striking given the growing emphasis on lived experience in service design. Disabled people with intellectual disability, alongside whānau and advocacy organisations, have long articulated concerns regarding fragmented responsibility, inaccessible services and crisis-driven responses, yet these perspectives remain infrequently reflected in mainstream mental health planning.

Measurement and visibility

Aotearoa New Zealand’s specialist mental health information is held principally in the Programme for the Integration of Mental Health Data (PRIMHD), the national collection of mental health and addiction service activity and outcomes.¹¹ PRIMHD can identify some people with intellectual disability through legal status, specialist team type or recorded diagnosis. However, the standards do not appear to include a dedicated person-level indicator of intellectual disability. Consequently, routine reporting may not consistently identify people whose intellectual disability is not recorded diagnostically, who are not receiving care from a specialist intellectual disability service or who are not subject to the Intellectual Disability (Compulsory Care and Rehabilitation) Act 2003. Some information therefore reaches us only indirectly through regulatory reports, mortality studies and disability sector research. The routine information system provides only a partial view of how mental health services perform for people with intellectual disability.

The consequence is that basic questions have no clear answer: how many people receive specialist mental health care, experience repeated crises or are exposed to restrictive interventions? Without disaggregated data, the inequities described above remain anecdotal—vivid in individual cases, invisible in aggregate. What is not measured is difficult to govern, fund and improve.¹⁰

Accountability

The history of intellectual disability services in Aotearoa New Zealand is complex and, at times, deeply uncomfortable, as it has been in many countries. Large institutions concentrated clinical expertise, specialist nursing knowledge and organisational oversight; they also enabled profound restrictions on liberty, separation from whānau and community and—for some—neglect, abuse and loss that are still being documented.¹² Deinstitutionalisation was a necessary corrective action, reflecting changing expectations about citizenship, rights and self-determination.

Care for people with intellectual disability and co-occurring mental illness is now distributed across multiple health, disability and social services. When people require support from multiple services, no single agency holds clear responsibility, and deterioration often occurs long before co-ordinated assistance emerges. Families end up co-ordinating between agencies, advocating repeatedly and absorbing the responsibility that once sat within formal services. For those without family advocates the consequences of invisibility can be even more profound.

The central challenge of a post-institutional system is less about where people live than about where responsibility resides. Without clear responsibility, the Roadmap’s aspirations cannot translate into practice. Community models offer inclusion, autonomy and ordinary lives. They also depend on systems that stay visible, co-ordinated and answerable when someone becomes unwell. Accountability requires mechanisms that recognise unmet need, respond early to crises, scrutinise restrictive practice, learn from adverse events and ensure people and whānau are not left to navigate the fragmenting systems alone. The task is not to rebuild institutions, but to retain enough expertise, oversight and responsiveness to support people with the most complex needs.

Contemporary debates about the organisation, location and sustainability of specialist intellectual disability demonstrate that these questions remain unresolved. Whenever small specialist capabilities become vulnerable during wider system reform, accountability is tested. Where responsibility is diffuse, invisibility becomes another form of exclusion, and the people most in need of protection are those the system loses sight of.

Expertise: a necessary but increasingly fragile resource

Invisibility in workforce planning is the quietest of all, particularly when mistaken for progress. The aspiration that people with intellectual disability should use ordinary health and mental health services wherever possible is widely supported and consistent with rights-based disability policy.⁵ Many people with intellectual disability who experience mental illness can be cared for in mainstream settings, provided reasonable adjustments are made and clinicians are appropriately supported.

For a smaller group with severe mental illness, autism, communication difficulties, trauma histories, offending behaviour or profound impairment in adaptive functioning, specialist assessment and consultation remain essential.⁵ Mainstreaming succeeds when expertise follows the person into ordinary services, not when ordinary services are left to manage complex presentations alone.

Specialist expertise is one of the least visible but most critical components of an equitable mental health system. Clinicians experienced in intellectual disability are better able to recognise atypical presentations, avoid diagnostic overshadowing, identify co-occurring conditions and support reasonable adjustments in mainstream care.^4–6

Aotearoa New Zealand has developed intellectual disability expertise through specialist clinical services, research and advocacy, but much of this capability is concentrated within a small workforce.⁵ Formal training pathways are limited; postgraduate opportunities are scarce. As experienced practitioners retire or leave the workforce, specialist diagnostic knowledge, clinical judgement and local system expertise may disappear faster than they can be replaced, much of which cannot readily be replicated within general mental health services.⁵

The question is not whether specialist services should replace mainstream provision—they should not—but whether Aotearoa New Zealand can retain sufficient specialist capability to keep mainstream services confident, responsive and equitable. Expertise is not a relic of the institutional era; it remains essential if people with intellectual disability are to share in the benefits of mental health reform.

Conclusion

The Roadmap is a welcome and necessary document, and the case for intellectual disability is not a case against it—it is a case for completing it. Each of its commitments—earlier access, effective crisis response, cultural responsiveness, a system that reaches those with the highest needs—applies with particular force to people with intellectual disability, precisely the group for whom the system most often fails to deliver them.

Making this population visible requires action across policy, data, accountability and workforce development. Intellectual disability should be explicitly identified within implementation plans, routine reporting and service accountability mechanisms, while specialist capability must be sustained to support both mainstream and specialist care. Universities, professional colleges, employers and registration bodies also have a role in ensuring future clinicians develop the competencies needed to deliver equitable mental health care.

None of this requires rebuilding the institutions that caused such harm. It requires only that a system committed to equity extends that commitment to a population that has too often experienced the opposite. Equity is ultimately tested not by how well a system serves the populations it readily recognises, but by its willingness to notice, count and respond to the people whose needs have long sat at the margins of policy and service design. For people with intellectual disability and co-occurring mental illness—the people a system finds hardest to see—becoming visible is not a special request. It is the minimum requirement of a mental health system that seeks to be equitable.