The evidence is in. The Government’s policies don’t match up.
By Debbie Ward (National Disability Leadership Coordinator) and Phoebe Eden‑Mann (National Policy Advisor), CCS Disability Action
Published 11 August 2026
On 5 June 2026, two reports landed on the same day: A Window on Disability from the Health Quality & Safety Commission Te Tāhū Hauora, and Disabled People’s | Tāngata Whaikaha Experiences of Health Services: report on complaints to HDC from the Health and Disability Commissioner. Together they tell us something New Zealand can no longer claim not to know. Disabled people are dying from conditions the health system already knows how to treat.
Disabled people die from treatable conditions at five times the rate of non disabled people. For Māori disabled people, that rises to nearly 10 times the rate of non Māori, non Pacific non disabled people. Those figures come from A Window on Disability.
Both reports name the same remedy: put disabled people at the centre of the decisions, the data, and the services that shape their lives. Our argument is straightforward. Over the past year, government policy has moved in the opposite direction. That gap now needs closing.
What A Window on Disability found
A Window on Disability is the first national picture of how disabled people move through our health system. The Commission built it with researchers from the Donald Beasley Institute and the data analytics group Nicholson Consulting. It combines disabled‑led research and community engagement with analysis of the Integrated Data Infrastructure, to overcome the shortcomings of current disability data. Much of the data had never been analysed before.
Its findings follow the whole life course, and the pattern is consistent.
Disabled people who become pregnant are less likely to enrol with a lead maternity carer in the first trimester. They have higher rates of pre‑term birth, and report poorer experiences of maternity services. Health outcomes for disabled children are broadly comparable to those of non‑disabled children. The disparities become apparent as people age.
The transition out of paediatric services and into adult health care is identified as a critical point of failure. Connections fragment at exactly the age when a young person is least equipped to hold the system together.
In adulthood, the picture worsens. Disabled adults have higher rates of chronic conditions, mental distress, and major cancers. Disabled people were 22 percent more likely to be diagnosed with cancer than non‑disabled people, rising to 34 percent for those aged 45–65. Access and financial barriers to primary care push people towards emergency departments, with unmet need concentrated in primary, mental, and oral health care. Some disabled adults are placed prematurely into aged residential care. Others decline avoidably because support arrived late or not at all.
The inequities are sharpest for some groups. They compound for people with more than one impairment, and for Māori and Pacific disabled people. Tāngata whaikaha Māori report worse health and lower trust in the health system than their non‑disabled peers. People with learning disability die significantly younger, and have much higher potentially avoidable hospitalisations. They are also far more likely to be treated for psychosis, including being medicated without a diagnosis that features psychosis.
Underneath all of it sits a structural problem: disability is largely invisible in our health data. Most major national health data sets do not record whether someone is disabled. Everyone using the health system has a National Health Index number, and that record does not capture disability or support needs. So the system cannot reliably find, count, or plan for more than 850,000 disabled New Zealanders, around one in six of us. Data gaps are especially severe for older disabled people.
This is not a technical footnote. If you cannot see a group in your data, you cannot measure whether you are failing them. New Zealand ratified the United Nations Convention on the Rights of Persons with Disabilities in 2008. Article 31 requires states to collect the data they need to give effect to it. Invisibility is not a neutral state. It is a rights problem.
The report makes four recommendations:
reflect disability accurately in national health data
embed disability knowledge across health workforce education, training, and professional development
employ disabled people and tāngata whaikaha in health agencies and services
involve disabled people in decision making, including through nationwide supported decision‑making frameworks
Professor Sunny Collings, the Commission’s Chief Executive, is blunt about what it shows. The report “paints a stark picture of how health outcomes and service experiences change, and often worsen, over a disabled person’s life course”.
What the complaints tell us
The second report is Disabled People’s | Tāngata Whaikaha Experiences of Health Services: report on complaints to HDC, from the Health and Disability Commissioner. It analyses around 1,800 complaints about care provided to disabled people under 65, made between 1 January 2023 and 31 December 2025. Of those, 176 were examined closely.
Around 25 percent of all complaints the Commissioner receives concern care provided to someone who identifies as disabled. Only about 4 percent each year are about disability support providers. Most complaints about services to disabled people are about health services.
Seven themes emerged:
person‑centred care
cultural responsiveness
quality of communication
informed consent processes
quality of disability‑related cares
quality of medical treatment
continuity and coordination of care
Behind those headings sit the specifics. The report describes the use of restraint, particularly involving neurodivergent children. It describes distress in emergency departments and shared wards, and delayed personal cares with families filling the gap. It records diagnostic overshadowing, where a symptom is written off as part of someone’s disability. It records inadequate access to interpreters, and failures to treat disabled people as experts in their own lives. For Deaf people | tāngata Turi, only around 30 to 40 percent of spoken English can be understood through lip‑reading alone, and less again when a person is unwell.
The Commissioner is careful about what the numbers mean. The themes are not a measure of how often each issue occurs, and the complaints are described as the “tip of the iceberg”. Disabled people and whānau face real barriers to complaining at all, including fear of retaliation or losing a service. People with learning disability and people in residential support are under‑represented. In other words, the report is a floor, not a ceiling.
Deputy Health and Disability Commissioner Rose Wall is direct about the cause. “Disabled people experience poorer health outcomes, and implicit and explicit biases towards disability remain.” Her conclusion matters just as much. “Disabled people must be at the centre of this work. Their voice and leadership are essential in shaping services that are safe, accessible and responsive to their needs.”
Two reports, one diagnosis
One report counted deaths and the other read complaints, and they reached the same conclusion.
They also back each other explicitly. The Commissioner’s fifth recommendation endorses all four areas for progress identified in A Window on Disability: better broken down disability data, disability training across the health workforce, more employment of disabled people across the health system, and supported decision‑making frameworks. Health New Zealand | Te Whatu Ora and Disability Support Services at the Ministry of Social Development are named as lead agencies. Health New Zealand has committed to a roadmap within three months.
Two independent bodies, working from entirely different evidence, arrive at one diagnosis: a health system designed without disabled people produces harm that is structural, not accidental.
Neither report covers everything. The Commissioner’s analysis excluded complaints about residential and community disability support, and about Needs Assessment and Service Coordination (NASC). Residential services were addressed in a separate 2024 report. That exclusion is a real gap. Community disability support and assessment services shape whether someone gets to a GP. They shape whether a person has the support to attend an appointment, and whether they are believed when they get there. The themes in the 2024 residential report were much the same as the themes here. That suggests the pattern is system‑wide rather than setting‑specific.
Where policy is heading instead
Here is where the gap opens up. The reports arrived while a series of decisions were moving the other way.
Income support
Money is a health determinant. Disabled people already live on less. Median disposable income in disabled households was $45,693, against $56,485 in households with no disabled people. Material hardship affected 26.9 percent of disabled children, compared with 8.4 percent of children in households with no disabled family member. Both reports found people skipping GP visits and prescriptions because of cost, and struggling to afford transport to appointments – in line with findings that a fifth of disabled people are unable to afford the GP. Income support is health policy.
The forecasts point down. The Disability Allowance baseline is projected to fall from $326.5 million in 2025/26 to $279 million by 2029/30, a real‑terms decline of roughly 15 percent with no real explanation.
Two pieces of legislation compound that. The Social Security (Jobseeker Support and Accommodation Supplement) Amendment Bill introduces a Parental Assistance Test from 2 November 2026. It applies to every category of Jobseeker Support, including the Health Condition, Injury, or Disability category. It contains no exemption for young disabled people who already hold a medical certificate saying they cannot work. A family earning just over $65,529 is treated as able to support an 18‑year‑old, with no adjustment for disability‑related costs. Officials estimate around 4,300 young people will no longer be eligible in 2027/28, with forecast savings of $163.7 million. The same Bill lifts the Accommodation Supplement entry threshold for some homeowners from 30 percent to 40 percent from 1 April 2027. People on Supported Living Payment keep the 30 percent threshold. People on Jobseeker Support with a health condition or disability do not.
The Social Security (Modernisation) Amendment Act 2026 goes further. It passed all its readings in a single day under Budget urgency on 28 May 2026, with no public submissions. From 1 July 2026 it allows automated decision‑making across almost any benefit decision. The associated Budget forecast expects to pay out $55 million less in benefits over four years. Disability is not straightforward to score. Conditions fluctuate, energy varies, and distress does not follow a schedule.
Set that beside the Commissioner’s finding that disabled people already face significant barriers to challenging a decision about their own care. Automating eligibility decisions while removing the select committee stage moves in the opposite direction from both reports.
Transport, housing, and the disability ministry
From 1 July 2026, the Total Mobility subsidy dropped from 75 percent to 65 percent. The Crown’s share fell from 25 percent to 15 percent, and fare caps came down by around 10 percent in each region. Blind Low Vision New Zealand ran a national day of action against the change, and against proposals for trip caps and periodic eligibility reassessments. Both reports found that transport is already a barrier to primary care. A more expensive taxi does not get anyone to an appointment earlier.
Housing tells the same story. Kāinga Ora quietly removed its commitment that at least 15 percent of eligible new social housing builds meet full universal design standards. It had held that target since 2019, and once described it as a minimum starting goal. Fully universally designed homes remain less than two percent of its portfolio, with just 97 planned for 2025/26. More than 800 disabled New Zealanders under 65 live in aged residential care, because there is nowhere accessible for them in the community. A Window on Disability names premature entry into aged residential care as a health failure. It is also a housing decision.
Budget 2026 delivered no new spending for disability services, and cut $1.46 million from Whaikaha - Ministry of Disabled People. The stated basis was “optimising aspects of the operating model” and “realising benefits from the investment in artificial intelligence”. Set that against the report’s third and fourth recommendations. They ask agencies to employ disabled people and tāngata whaikaha, and to involve them in decision making. A smaller advocacy ministry, with software asked to cover the difference, is the reverse of that advice.
The Disability Support Services Bill belongs in this list too. Clause 8 sets a binding principle that families and whānau “have responsibility in the first instance for the well‑being of their members”. The Bill also moved through Parliament on a timetable that gave some organisations as little as five minutes to present. Eight national organisations, CCS Disability Action among them, asked Parliament to slow it down. Whatever the final shape of that Bill, the process is the opposite of the involvement both reports call for.
The fiscal argument, taken seriously
We accept the constraint. Funding is finite, costs have risen, and every government has to choose. Total Mobility trips grew from 1.8 million in 2018 to about three million in 2024/25. Funders face a forecast shortfall of $236 million over 2025 to 2030. Those are real numbers, and pretending otherwise helps no one.
But A Window on Disability is a fiscal document as much as a clinical one. Emergency departments are the most expensive door in the health system. Disabled people are being pushed towards that door because the cheaper one, primary care, is harder to open. Avoidable hospitalisations, late cancer diagnoses, and premature entry into aged residential care are all expensive. Deaths from treatable conditions are the end point of care that came too late.
Savings lodged in one Budget Vote often become costs in another. A young disabled person who loses Jobseeker Support does not stop needing food, medication, or transport to appointments. A lower Total Mobility subsidy does not remove the appointment. The cost moves. It does not disappear.
Most of what both reports ask for is not expensive. Adding a standardised disability identification question to health data collection is a design decision. Building disability competency into workforce curricula is a curriculum decision. Publishing a support gap test in plain language, or writing a medical exemption into a Bill, costs drafting time. Consulting properly costs weeks, not millions. What it costs is the willingness to slow down and share the pen.
What we are asking for
Four things, and none of them requires a new Budget round.
Commit to and fully resource mandatory, standardised data collection that accurately captures disability, as A Window on Disability recommends, with a clear timeline for implementation.
Assess income support changes for their health impact before they take effect. At a minimum, exempt young disabled people with a current medical certificate from the Parental Assistance Test, and apply the same Accommodation Supplement threshold to Jobseeker Support recipients with a health condition or disability as applies to Supported Living Payment.
Involve disabled people and whānau in implementing both reports’ recommendations, not just in being consulted about them. Health New Zealand’s three‑month roadmap is the first test of that.
Be clear about who is holding the line across Government. Whaikaha - Ministry of Disabled People and the Health Quality & Safety Commission both have a role in advocating for policy that improves health outcomes for disabled people rather than hindering them. That role should be stated publicly, and resourced.
The recommendations in both reports are broad. They will need systemic change and cross‑sector collaboration. Neither will happen if health agencies work towards better outcomes while income support, transport, and housing decisions pull the other way.
We have the evidence now. The question is no longer what the problem is. It is whether the people most affected get to help fix it.
Nothing about us without us was never a slogan. It is the cheapest quality improvement available to this system, and it is still on the table.
About the authors
Debbie Ward is National Disability Leadership Coordinator at CCS Disability Action. She works alongside disabled leaders and whānau hauā across Aotearoa to strengthen disabled people’s voice and influence in local and national decision‑making.
Phoebe Eden‑Mann is National Policy Advisor at CCS Disability Action. She leads policy analysis and advocacy on issues affecting disabled people, with a focus on income support, health, and disability rights.
About CCS Disability Action
CCS Disability Action is the largest pan‑disability support and advocacy organisation in Aotearoa New Zealand.
We support people with all types of impairments and have been working alongside disabled people since 1935.
We are at the forefront of service provision, advocacy and information sharing in the disability sector. We partner with disabled people, their families and whānau to enable them to have choice and control in their lives. Our vision is to see every disabled person and whānau hauā interwoven into the lives of their whānau and community.